tag:blogger.com,1999:blog-11300352389833897022024-03-12T20:28:51.413-07:00THE WHOLE DAMN CHRONIC SITUATIONA life with Chronic Fatigue Syndrome.TheChronicSituationhttp://www.blogger.com/profile/06521128598189880435noreply@blogger.comBlogger50125tag:blogger.com,1999:blog-1130035238983389702.post-84537263353796343212018-11-04T02:23:00.006-08:002018-11-06T09:08:21.042-08:00FINALLY WRITING ABOUT M.E. - A NEW BOOK<div class="separator" style="clear: both; text-align: center;">
<a href="https://2.bp.blogspot.com/-eXeaXSkJXvw/W9wlLwuUDGI/AAAAAAAAAOQ/Fi-DiSXO5IsFEXe5tdkJbXPL6aOojMqAgCPcBGAYYCw/s1600/typing.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="183" data-original-width="275" src="https://2.bp.blogspot.com/-eXeaXSkJXvw/W9wlLwuUDGI/AAAAAAAAAOQ/Fi-DiSXO5IsFEXe5tdkJbXPL6aOojMqAgCPcBGAYYCw/s1600/typing.jpg" /></a></div>
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">I have been writing for years. </span><br />
<span style="font-size: large;"><br /></span><span style="font-size: large;">I probably started back when I was an earnest teenager wanting to impress literary girls, and I continued into university, producing a poetry collection as part of my final year project. </span><br />
<span style="font-size: large;"><br /></span><span style="font-size: large;">Once I started working, I wrote a lot less as I had less time on my hands. Then, when ME hit, I found that I suddenly had lots of time again. When I was able, I began to write again, slowly, tentatively, in fits and starts. </span><br />
<span style="font-size: large;"><br /></span><span style="font-size: large;">Writing is one thing that most people with ME can do. It may be slow and painstaking, but if you feel OK for twenty minutes a day then you can manage to put together a few paragraphs. </span><br />
<span style="font-size: large;"><br /></span><span style="font-size: large;">Taking it seriously</span><br />
<span style="font-size: large;"><br /></span><span style="font-size: large;">After a few years, I was lucky enough to get back to a semi-functioning state of health, where I worked part-time but still had a lot of time free, so writing was something that I began to take seriously. I made it part of my daily routine, and tried to get thirty or sixty minutes a day done. </span><br />
<span style="font-size: large;"><br /></span><span style="font-size: large;">I began to write novels. I generally failed to finish these novels, getting to about two-thirds of the way through a story and then abandoning them. </span><br />
<span style="font-size: large;"><br /></span><span style="font-size: large;">I eventually joined a writing group, which focused my mind and helped me to actually reach the end of a novel. I finally managed to finish one, and then another, and when my health was strong enough, I looked into the self-publishing process. In 2016 I published <a href="http://ayearinlisbon.com/">my first novel</a>. </span><br />
<span style="font-size: large;"><br /></span><span style="font-size: large;">It has been an adventure. The novel was set in Lisbon, Portugal, so I went there a couple of times to promote it. It was picked up by a university professor there, who put it on one of his courses as an optional text. Students wrote assignments on the book. </span><br />
<span style="font-size: large;"><br /></span><span style="font-size: large;">Never wrote about ME</span><br />
<span style="font-size: large;"><br /></span><span style="font-size: large;">In all of this, one thing I never did was write about M.E. Or rather, I have had this blog for years, and this was where I did my writing about my ME experience, so perhaps that was enough. </span><br />
<span style="font-size: large;"><br /></span><span style="font-size: large;">But there was also the fact that writing for me has been in part a response to having ME, and an attempt to escape a little from this. I didn't write about ME because writing was part of my 'normal' life, a space where I could pretend that I was just a person doing something that everyone else can do. </span><br />
<span style="font-size: large;"><br /></span><span style="font-size: large;">My novels explored themes of identity and new chances, relationships and escape, language and culture. I have no doubt that my ME experience informed what I was writing, but I never touched directly on what it was like to live with this condition. </span><br />
<span style="font-size: large;"><br /></span><span style="font-size: large;">New book and change</span><br />
<span style="font-size: large;"><br /></span><span style="font-size: large;">That changed with my new book, which has just been published in e-book form, with the printed version to follow. It has been two years in the making and began with a quote from a linguistics book by Stephen Pinker that I was reading - </span><br />
<span style="font-size: large;"><br /></span><span style="font-size: large;"><i>"The verbs be, go, do and have are the most commonly used verbs in most languages - many language scientists believe that the meanings of these verbs - existence, possession, action, motion - are at the core of the meanings of all verbs."</i></span><br />
<span style="font-size: large;"><br /></span>
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<span style="font-size: large;">Immediately, I saw the potential for stories. I started writing that very day, and things came together quickly. I wrote about a meditation group and three characters who were trying to live in the moment and just "be". </span><br />
<span style="font-size: large;"><br /></span><span style="font-size: large;">I wrote about a travel writer who had itchy feet but had decided to try and settle down. That was the "go" section. </span><br />
<span style="font-size: large;"><br /></span><span style="font-size: large;">Then there was the property tycoon who had come from a poor background and who had built up his wealth with some questionable practices. That, obviously, would work for a story connected to the verb "have". </span><br />
<span style="font-size: large;"><br /></span><span style="font-size: large;">So a novel exploring these four central verbs; Be Do Go and Have, began to take shape. I had only one verb left though, one that I had been putting off till last - Do. </span><br />
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<span style="font-size: large;">The solution was obvious, though I resisted it for a while. Eventually, I began to write about a young woman in her twenties, Kay Noone, who is housebound with ME. In then end, that soon became the easiest section to write. It just came out, and I found that I could write from her perspective without even really trying. </span><br />
<span style="font-size: large;"><br /></span><span style="font-size: large;">Kay describes her condition as a "doing allergy". As she says, looking back at her former life, "I did, and now I do not do". What I was exploring through Kay was one of the key frustrations in the life of a person with ME - everyone around you seems to be engaged in a non-stop flurry of action, while you are stalled, limited and generally unable to "do" much. </span><br />
<span style="font-size: large;"><br /></span><span style="font-size: large;">The stories develop in a parallel fashion, with characters from one appearing in another, and themes repeated and explored across different narratives. Slowly, the stories draw together towards the end. </span><br />
<span style="font-size: large;"><br /></span><span style="font-size: large;">The choice of a person with ME to represent the "do" section of the book soon began to seem natural, but I was only able to write this because I have made a kind of recovery, and am now living a close to normal life. I am not recovered completely, but I am busy and active and working full-time, and engaged in all of this action that I used to wish for and which Kay, in the book, is not able to do. </span><br />
<span style="font-size: large;"><br /></span><span style="font-size: large;">I am still a little insecure about my recovery, but it is holding, for now. If I was still in the midst of the frustrating life of limits that I had for so long, I would not have been able to write the ME part of the book. </span><br />
<span style="font-size: large;"><br /></span><span style="font-size: large;">ME Novel?</span><br />
<span style="font-size: large;"><br /></span><span style="font-size: large;">I am reluctant to market this as an ME novel, as this theme is only really one quarter of the whole book. Yet, Kay's story is a central part of the narrative, and I think a lot of people may identify with her experiences. </span><br />
<span style="font-size: large;"><br /></span><span style="font-size: large;">That said, the ME community is diverse and not at all homogeneous, and there are people who suffer from ME who would read Kay's version and not identify at all. There may even be some people who are offended by my portrayal of an ME sufferer. I was aware of that as I was writing and was trying to be sensitive to it. However, you cannot represent everyone with a condition where people's experiences are so varied. Kay's story is one story, and is not intended to be the definition of an ME experience. </span><br />
<span style="font-size: large;"><br /></span><span style="font-size: large;">I deliberately made the character a young woman, as it seems that about three-quarters of all sufferers are female. Kay's experiences are not really mine, though they are informed by what I went through. As much as my own experience, her characters is influenced by what other people I have read about and talked to have communicated; including Jennifer Brea and <a href="https://nopostergirl.com/">No Poster Girl</a>. </span><br />
<span style="font-size: large;"><br /></span><span style="font-size: large;">All told, I am pleased with and proud of the book. I am also happy with the Do section; the M.E. section of the book where Kay tells her story. I tried to get inside the mind of someone in that position, and believe that I have succeeded, at least partly. </span><br />
<span style="font-size: large;"><br /></span><span style="font-size: large;">If anyone wanted to read a sample, part one of Kay's story is <a href="https://drive.google.com/file/d/1uf_NuChQmBFzpgbsSMRCyzXokmBkzl2O/view?usp=sharing">here</a> (there are four parts). The book went up on the Amazon Kindle store this week, and will be available as a printed version in the next couple of weeks. More info on my website <a href="http://www.lorcanmcnamee.com/2018/10/new-novel-be-do-go-have-coming-soon.html">here</a>, if you are interested. </span><br />
<br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;"><br /></span>TheChronicSituationhttp://www.blogger.com/profile/06521128598189880435noreply@blogger.com0tag:blogger.com,1999:blog-1130035238983389702.post-68623333767585701012018-11-02T03:57:00.001-07:002018-11-03T01:15:03.075-07:00FINALLY WRITING ABOUT M.E. - NEW BOOK.<div class="separator" style="clear: both; text-align: center;">
<a href="https://3.bp.blogspot.com/-eXeaXSkJXvw/W9wlLwuUDGI/AAAAAAAAAOM/ajzusksedkYA-t-87xrBQ4W6J7sA3v95QCLcBGAs/s1600/typing.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="183" data-original-width="275" src="https://3.bp.blogspot.com/-eXeaXSkJXvw/W9wlLwuUDGI/AAAAAAAAAOM/ajzusksedkYA-t-87xrBQ4W6J7sA3v95QCLcBGAs/s1600/typing.jpg" /></a></div>
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">I have been writing for years. </span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">I probably started back when I was an earnest teenager wanting to impress literary girls, and I continued into university, producing a poetry collection as part of my final year project. </span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">Once I started working, I wrote a lot less as I had less time on my hands. Then, when ME hit, I found that I suddenly had lots of time again. When I was able, I began to write again, slowly, tentatively, in fits and starts. </span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">Writing is one thing that most people with ME can do. It may be slow and painstaking, but if you feel OK for twenty minutes a day then you can manage to put together a few paragraphs. </span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">Taking it seriously</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">After a few years, I was lucky enough to get back to a semi-functioning state of health, where I worked part-time but still had a lot of time free, so writing was something that I began to take seriously. I made it part of my daily routine, and tried to get thirty or sixty minutes a day done. </span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">I began to write novels. I generally failed to finish these novels, getting to about two-thirds of the way through a story and then abandoning them. </span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">I eventually joined a writing group, which focused my mind and helped me to actually reach the end of a novel. I finally managed to finish one, and then another, and when my health was strong enough, I looked into the self-publishing process. In 2016 I published <a href="http://ayearinlisbon.com/">my first novel</a>. </span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">It has been an adventure. The novel was set in Lisbon, Portugal, so I went there a couple of times to promote it. It was picked up by a university professor there, who put it on one of his courses as an optional text. Students wrote assignments on the book. </span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">Never wrote about ME</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">In all of this, one thing I never did was write about M.E. Or rather, I have had this blog for years, and this was where I did my writing about my ME experience, so perhaps that was enough. </span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">But there was also the fact that writing for me has been in part a response to having ME, and an attempt to escape a little from this. I didn't write about ME because writing was part of my 'normal' life, a space where I could pretend that I was just a person doing something that everyone else can do. </span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">My novels explored themes of identity and new chances, relationships and escape, language and culture. I have no doubt that my ME experience informed what I was writing, but I never touched directly on what it was like to live with this condition. </span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">New book and change</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">That changed with my new book, which has just been published in <a href="https://www.amazon.co.uk/Be-Do-Go-Have-Novel-ebook/dp/B07K1RYCXD/ref=sr_1_1?ie=UTF8&qid=1541156483&sr=8-1&keywords=be+do+go+have">e-book form</a>, with the printed version to follow. It has been two years in the making and began with a quote from a linguistics book by Stephen Pinker that I was reading - </span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;"><i>"The verbs be, go, do and have are the most commonly used verbs in most languages - many language scientists believe that the meanings of these verbs - existence, possession, action, motion - are at the core of the meanings of all verbs."</i></span><br />
<span style="font-size: large;"><br /></span>
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<span style="font-size: large;">Immediately, I saw the potential for stories. I started writing that very day, and things came together quickly. I wrote about a meditation group and three characters who were trying to live in the moment and just "be". </span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">I wrote about a travel writer who had itchy feet but had decided to try and settle down. That was the "go" section. </span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">Then there was the property tycoon who had come from a poor background and who had built up his wealth with some questionable practices. That, obviously, would work for a story connected to the verb "have". </span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">So a novel exploring these four central verbs; Be Do Go and Have, began to take shape. I had only one verb left though, one that I had been putting off till last - Do. </span><br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-X-H3p2RUu8I/W9wkm8tCChI/AAAAAAAAAOI/pEQPOSzMEP8Krkd5v78hpzI7D3Gv-2bxwCPcBGAYYCw/s1600/Kindle%2Bcover3.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1000" height="320" src="https://1.bp.blogspot.com/-X-H3p2RUu8I/W9wkm8tCChI/AAAAAAAAAOI/pEQPOSzMEP8Krkd5v78hpzI7D3Gv-2bxwCPcBGAYYCw/s320/Kindle%2Bcover3.jpg" width="200" /></a></div>
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">The solution was obvious, though I resisted it for a while. Eventually, I began to write about a young woman in her twenties, Kay Noone, who is housebound with ME. In then end, that soon became the easiest section to write. It just came out, and I found that I could write from her perspective without even really trying. </span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">Kay describes her condition as a "doing allergy". As she says, looking back at her former life, "I did, and now I do not do". What I was exploring through Kay was one of the key frustrations in the life of a person with ME - everyone around you seems to be engaged in a non-stop flurry of action, while you are stalled, limited and generally unable to "do" much. </span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">The stories develop in a parallel fashion, with characters from one appearing in another, and themes repeated and explored across different narratives. Slowly, the stories draw together towards the end. </span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">The choice of a person with ME to represent the "do" section of the book soon began to seem natural, but I was only able to write this because I have made a kind of recovery, and am now living a close to normal life. I am not recovered completely, but I am busy and active and working full-time, and engaged in all of this action that I used to wish for and which Kay, in the book, is not able to do. </span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">I am still a little insecure about my recovery, but it is holding, for now. If I was still in the midst of the frustrating life of limits that I had for so long, I would not have been able to write the ME part of the book. </span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">ME Novel?</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">I am reluctant to market this as an ME novel, as this theme is only really one quarter of the whole book. Yet, Kay's story is a central part of the narrative, and I think a lot of people may identify with her experiences. </span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">That said, the ME community is diverse and not at all homogeneous, and there are people who suffer from ME who would read Kay's version and not identify at all. There may even be some people who are offended by my portrayal of an ME sufferer. I was aware of that as I was writing and was trying to be sensitive to it. However, you cannot represent everyone with a condition where people's experiences are so varied. Kay's story is one story, and is not intended to be the definition of an ME experience. </span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">I deliberately made the character a young woman, as it seems that about three-quarters of all sufferers are female. Kay's experiences are not really mine, though they are informed by what I went through. As much as my own experience, her characters is influenced by what other people I have read about and talked to have communicated; including Jennifer Brea and <a href="https://nopostergirl.com/">No Poster Girl</a>. </span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">All told, I am pleased with and proud of the book. I am also happy with the Do section; the M.E. section of the book where Kay tells her story. I tried to get inside the mind of someone in that position, and believe that I have succeeded, at least partly. </span><br />
<span style="font-size: large;"><br /></span><span style="font-size: large;">If anyone wanted to read a sample, part one of Kay's story is <a href="https://drive.google.com/file/d/1uf_NuChQmBFzpgbsSMRCyzXokmBkzl2O/view?usp=sharing">here</a> (there are four parts). The book went up on the <a href="https://www.amazon.co.uk/Be-Do-Go-Have-Novel-ebook/dp/B07K1RYCXD/ref=sr_1_2?ie=UTF8&qid=1541156134&sr=8-2&keywords=lorcan+mcnamee">Amazon Kindle store</a> this week, and will be available as a printed version in the next couple of weeks. More info on my website <a href="http://www.lorcanmcnamee.com/2018/10/new-novel-be-do-go-have-coming-soon.html">here</a>, if you are interested. </span><br />
<br />
<span style="font-size: large;"><br /></span>
<br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;"><br /></span>TheChronicSituationhttp://www.blogger.com/profile/06521128598189880435noreply@blogger.com0tag:blogger.com,1999:blog-1130035238983389702.post-47395623287123833342018-05-13T08:09:00.000-07:002018-05-13T13:50:05.420-07:00UNREST<br />
<div class="MsoNormal">
<span style="font-size: large;">There was a screening of Jennifer Brea’s harrowing film
Unrest yesterday in a local hotel and, after twelve months or so of largely</span></div>
<div class="MsoNormal">
<span style="font-size: large;"></span></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="font-size: large;"><a href="https://1.bp.blogspot.com/-ebzzyTAX-Ro/WvhTqo4VXmI/AAAAAAAAAMk/JQFWJb3p_rssGGol0Hu67sIwGWzaO6pwgCLcBGAs/s1600/Poster-Unrest-Film-Forum-Night-Library-663x1024.png" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1024" data-original-width="663" height="320" src="https://1.bp.blogspot.com/-ebzzyTAX-Ro/WvhTqo4VXmI/AAAAAAAAAMk/JQFWJb3p_rssGGol0Hu67sIwGWzaO6pwgCLcBGAs/s320/Poster-Unrest-Film-Forum-Night-Library-663x1024.png" width="207" /></a></span></div>
<span style="font-size: large;">staying away from thinking and talking about M.E., I decided to go along. <o:p></o:p></span><br />
<div class="MsoNormal">
<span style="font-size: large;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: large;">The film was organized by the <a href="http://www.irishmecfs.org/">Irish ME/CFS Association </a>and introduced by a young woman who herself has
M.E. and who, I later found out, had done interviews on local radio and newspapers.
The radio interview is <a href="https://www.oceanfm.ie/2018/04/30/coping-with-me-chronic-fatigue-syndrome/">here</a>; she is poised and impressive and an excellent
spokesperson for M.E. sufferers. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: large;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: large;">Jennifer Brea</span></div>
<div class="MsoNormal">
<span style="font-size: large;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: large;">People may not have heard of Jennifer Brea, but her story is
a familiar one for anyone with CFS/ME; she was a healthy, active individual
when she contracted a virus that left her quite ill. Essentially she never
recovered after this virus; a story that many millions of people can identify
with. She is married but quite badly disabled and, in frustration at the limits
on her life and the inaction of the medical community, she decided to make a
film about her experience. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: large;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: large;">That film is called <a href="https://www.unrest.film/">Unrest</a>. The most impactful element of
this film is that Jennifer insisted on being filmed at her worst, when she was
exhausted, unable to move, depressed, semi-suicidal, intolerant of light and
noise, unreasonable and frantic. It is this human element that brings home the
massive impact that the condition has on her life, and on all sufferers lives.</span></div>
<div class="MsoNormal">
<span style="font-size: large;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: large;">Marriage</span></div>
<div class="MsoNormal">
<span style="font-size: large;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: large;">Another key element in the movie is her relationship with
her husband. At my worst, I was cared for by my parents and siblings, but
luckily I was rarely bad enough that I couldn’t do the simple everyday things
of preparing food, showering and dressing that are a struggle for so many. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: large;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: large;">Even still, I felt guilty about the impact that my illness
was having on their lives, in terms of worry and also in the practical things
that they had to do just to keep me going. That is also something that is
obvious in Jennifer’s worldview; she feels like she is holding her husband, Omar,
back in his life, unable to give him children, dragging him down with her. </span></div>
<div class="MsoNormal">
<span style="font-size: large;"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="font-size: large;"><a href="https://4.bp.blogspot.com/-GFpFQFw8uqA/WvhUsKRC9DI/AAAAAAAAAMw/xg_xyQDarKwnHfOcrclMyfIgMNZ4FN26ACLcBGAs/s1600/Still-from-Unrest-Gloucester-Live-Dec-2017.png" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="338" data-original-width="605" height="178" src="https://4.bp.blogspot.com/-GFpFQFw8uqA/WvhUsKRC9DI/AAAAAAAAAMw/xg_xyQDarKwnHfOcrclMyfIgMNZ4FN26ACLcBGAs/s320/Still-from-Unrest-Gloucester-Live-Dec-2017.png" width="320" /></a></span></div>
<span style="font-size: large;"><o:p></o:p></span><br />
<div class="MsoNormal">
<span style="font-size: large;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: large;">There is an affecting scene near the end of the film, where
Jennifer expresses a lot of this to her husband. We have seen the effects that
her illness has had on him, that he too is in stasis with his life on hold,
acting as his wife’s carer and support system. He told her, apparently honestly
– though I imagine he must have thought that it was all too much for him too at
times – that it was still all worth it, just to have her in her life. Yet you
could see the pain that this caused them both, the devastation ME/CFS has
wreaked on their relationship and on their day to day lives</span><span style="font-size: large;">.</span></div>
<div class="MsoNormal">
<span style="font-size: large;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: large;">Personal Impact</span></div>
<div class="MsoNormal">
<span style="font-size: large;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: large;">I called the film “harrowing” above because for me it was a little traumatic watching it. I have made quite a decent recovery in the last five
years and in the last year my life has opened up in ways that I never thought
possible; I am now working full-time, I exercise regularly, cycle in to work
most days, have published <a href="http://ayearinlisbon.com/">a book</a> and have recently begun a relationship for the first time in years. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: large;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: large;">I am coming close to the end of the academic year and, as of
this date, I have not missed a day – or even a class – to illness since March
2017. This small fact I consider, in my limited, stumbling existence, as one of
my greatest achievements of the last ten years, seeing as I have a history of
missing weeks at a time due to illness. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: large;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: large;">I am happy, active, interested in the future. This does not
mean that I am 100% “recovered”; stress still affects me in disproportionate
ways, I take a long time to recover from illness of any kind and I have to
carefully manage my energy levels and activity. I still have periods of exhaustion,
headaches, some nausea, food intolerances, sluggishness, a huge dependence on
good sleep. In truth though, a lot of this is true for many “healthy” people,
especially those in their mid-forties. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: large;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: large;">So I have made progress that, in my worst days, I didn’t
imagine was possible. Yet those years, decades of ill-health are still with me;
they profoundly effect the way I live my life now and they have made it so that I am
ten or fifteen years behind my contemporaries in terms of family, children,
relationships, career. And they have left a psychological legacy that I am
still coming to terms with. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: large;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: large;">Memories</span></div>
<div class="MsoNormal">
<span style="font-size: large;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: large;">Watching Unrest just brought back memories of my past struggles
and difficulties; things that I have been trying to block out for the last busy
year. This is the reason that I haven’t posted a blog post in almost a year; I have
been busy trying to put a life together, trying to move forward, loath to go
back to that time in my life when I saw myself as someone without possibilities,
someone left behind, one of the forgotten. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: large;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: large;">It was a terrifying, lonely, desolate place – and I wasn’t even
someone who was severely affected, like Jennifer Brea – and, like any traumatic
experience, I have been pushing it back to the dark recesses of my memory, not
wanting to go back there. Unrest brought up stuff I have been trying not to
think about. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: large;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: large;">An Important Film</span></div>
<div class="MsoNormal">
<span style="font-size: large;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: large;">It is an important film; important, not just for ME sufferers,
who will see a lot of familiar themes in the story of Jennifer Brea and of the other
PWMEs that she interviews, but for those who, until they watched it, did not know
anything about the devastation that M.E. can have on a person’s life. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: large;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: large;">It has also reminded me about how lucky I am, even more than
twenty years in, to have a life back, and how such a precious thing should not
be taken for granted. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<br />TheChronicSituationhttp://www.blogger.com/profile/06521128598189880435noreply@blogger.com2tag:blogger.com,1999:blog-1130035238983389702.post-3742370486235763672018-05-12T07:02:00.000-07:002018-05-13T08:59:47.944-07:00NOW ONE OF THE TOP 50 CFS BLOGS<div style="text-align: center;">
<a href="https://blog.feedspot.com/cfs_blogs/" title="CFS blogs"><img src="https://blog-cdn.feedspot.com/wp-content/uploads/2017/10/cfs_216px.png" /></a></div>
<br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">Delighted to say that my blog has been named among the Top 50 CFS blogs by <a href="https://blog.feedspot.com/cfs_blogs/">feedspot.com</a>. </span>TheChronicSituationhttp://www.blogger.com/profile/06521128598189880435noreply@blogger.com0tag:blogger.com,1999:blog-1130035238983389702.post-86087807383087210632017-07-20T13:54:00.000-07:002017-07-20T13:54:04.855-07:00TWENTY YEARS<div class="MsoNormal">
<span style="font-size: large;">I usually put the anniversary of the beginning of my experience with
ME/CFS at the beginning of December. I got a cold in late November, 1997, and
that was the last time that I was fully healthy. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">Yet all during that year, 1997, I was ill. I had constant sore throats,
chest infections, colds, flus. I would finally get over one illness and two
weeks later I would be sick again. I was missing a lot of work, and even when I
managed to get in to work I would be struggling through the day, just about
managing. The illnesses were not very serious in themselves, but they tended to
last a long time and cause me profound exhaustion and post-viral fatigue. I was
being dragged down and down and down, my immune system was not working successfully,
and I was depressed and under a lot of stress.</span></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="font-size: large;"><a href="https://2.bp.blogspot.com/-ooTuHDmGJns/WXEYQKzT-NI/AAAAAAAAAMA/OYU0J-bpTbcDiWmH1RjLbDxAyklwgvitACLcBGAs/s1600/20years.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="320" data-original-width="320" src="https://2.bp.blogspot.com/-ooTuHDmGJns/WXEYQKzT-NI/AAAAAAAAAMA/OYU0J-bpTbcDiWmH1RjLbDxAyklwgvitACLcBGAs/s1600/20years.jpg" /></a></span></div>
<span style="font-size: large;"> <o:p></o:p></span><br />
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">It is obvious now that that was all laying the groundwork for the real
collapse that came later. So it is now twenty years ago, and more, that that
all happened. I look back on the person in his mid-twenties that I was then,
and feel sorry for him; he was so clueless, so ignorant of how to deal with
this slow destruction of his health, so lost. I never really had a chance. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">I can now see that part of the problem was that I needed time to get
over the various infections that I caught, and I didn’t always give that time
to myself. I didn’t always take the time I needed to recover, and was too hard
on myself; <i>I have to get back to work</i>,
I thought, <i>they are going to fire me if I
miss more time, what are my students going to do without me?</i> The truth was,
by forcing myself to work when I was sick, I made everything worse and so
missed more time. My students would have been fine with a sub for a few more
days. The world did not need me to be superhuman and invulnerable. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">My mind goes back twenty years because what happened then is still
happening. Whatever flaw or weakness in my immune system or central nervous
system that exists, it is a fact that I need a lot of rest and a good length of
time to get over something simple like a sore throat. I have made a lot of
progress since my worst days – and in general I am probably in better shape now
than back in 1997, before the official beginning of ME/CFS for me – but a minor
infection like a cold or stomach bug still floors me, just as it did then. Nothing
else has such a profound effect on my whole being, nothing else leaves me so
utterly incapable of functioning. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">And I am still making the same mistakes. Ten days ago I got a sore
throat – annoyingly during the spate of hot weather that we had – and now I am
hardly any better, and in fact it has moved to my chest now and it is difficult
to breathe. I had organized a launch in Dublin for a book that I published last
year, and so had to travel down on the train last week – two days into my
illness – and speak for two hours in front of a crowd. This was stressful and
tiring and so obviously I paid for this, and just got more ill. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">I tried to keep going a little when I came home, doing a little
shopping, visiting people, short walks, but of course by this morning I
realized that I felt like shit and was probably even worse than before. I was
reminded of the fact that I all too easily forget; to get over any kind of
infection, I have to stop everything. Everything has to be shut down. I stay
in, eat, sleep, maybe shower (though not always) and do almost nothing else. This
is my only way to recover: intense, deep rest. Just as it was twenty years ago.
<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">Every time I get sick, my mind goes back to all of those other episodes
of illness that I have experienced in the past. It is traumatic for me, I
think, because I am not good with inactivity, I don’t like just sitting still
and I always thing that I am missing something. And by now, I have lost so much
time over the length of my illness, that having to take even more time out to
get over a cold seems like such a waste. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">I don’t look back very often, and don’t tend to have a very good memory
for events in the past, but there is one two-week period from March 1997 that I
cannot forget, much as I would like to.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">I was teaching English in Lisbon, Portugal. I got sick on the Monday (it
nearly always happened on Mondays and Tuesdays, after a late night out on
Saturday), and it soon developed into a chest infection. I took a couple of
days off, but by Friday I reckoned that I really should be better, (I wasn’t) and
needed to go back. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">At that time I had Saturday morning classes, so for some reason I rang
the school on Friday and told them that I would be in. I still felt like shit
though, and that night I didn’t sleep, realizing that I had made a mistake. I went
in on Saturday anyway, crawled through my classes and came home and crashed. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">I had arranged to go to a Portuguese friend’s house in the country that
weekend and so, even though I was in no fit state to go on a weekend away, I left
on the Sunday morning with two of my friends (it was a long weekend; we all had
three days off the following week). I had been looking forward to going away and
so, rather than miss out, I said I was recovered and headed off. I remember
thinking that I desperately did not want to be on my own that long weekend. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">That night, in the house in the country, again I didn’t sleep; I had
difficulty breathing and was anxious. When my friends went out to the local
shop, I walked to the nearest village and took a bus back to Lisbon. I had now
really lost the plot. I was stressed, ill and didn’t know what I was doing. I
clearly remember that journey on the rickety bus back to the city, constantly
using my Ventolin inhaler and still having difficulty breathing. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">I made it back to my empty flat. Instead of resting, as I knew I should
do, I went out into the city, did some walking and shopping. I still don’t
really know why. By the time Wednesday came around again and I had to go back
to work, I was still ill. I went back anyway, and had to take another week off
(just after a five day weekend) to finally clear my chest infection. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">I drove myself into the ground with my restlessness, my inability to
just take the time I needed, my refusal to listen to my body. That two-week
spell is crystal clear in my mind, like very few other times are, because of
the level of frustration, anxiety and illness I went through. And I have never
really adapted to this frustration with my sluggish immune system: it makes me
so annoyed to have to undergo this trauma of weeks and weeks of being affected
if I get so much as a sore throat. It is exhausting, and has shaped my life
profoundly in the last twenty years. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<br />
<div class="MsoNormal">
<span style="font-size: large;">In twenty years time, I will be near retirement age: a thought that is
more terrifying than anything else in my life. But twenty years ago was when it
all started. </span><o:p></o:p></div>
TheChronicSituationhttp://www.blogger.com/profile/06521128598189880435noreply@blogger.com0tag:blogger.com,1999:blog-1130035238983389702.post-85599458924456795202017-05-10T07:45:00.001-07:002017-05-10T07:56:48.713-07:00SNAKES AND LADDERS<div align="center" class="MsoNormal" style="text-align: center;">
<br /></div>
<div class="MsoNormalCxSpMiddle">
<span style="font-size: large;">I roll the dice<o:p></o:p></span></div>
<div class="MsoNormalCxSpMiddle">
<span style="font-size: large;">And move like <o:p></o:p></span></div>
<div class="MsoNormalCxSpMiddle">
<span style="font-size: large;">An arthritic old man<o:p></o:p></span></div>
<div class="MsoNormalCxSpMiddle">
<span style="font-size: large;">Space by tortuous space. </span><br />
<div class="separator" style="clear: both; text-align: center;">
<span style="font-size: large;"><a href="https://2.bp.blogspot.com/-RX_uz46fDKM/WRMpV-6WgdI/AAAAAAAAALw/HwLXZh3xv5wkN_r_6hp3ZuvM4s1ayjkUwCLcB/s1600/stock-vector-snakes-and-ladders-board-game-snakes-ladders-start-finish-163384724.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://2.bp.blogspot.com/-RX_uz46fDKM/WRMpV-6WgdI/AAAAAAAAALw/HwLXZh3xv5wkN_r_6hp3ZuvM4s1ayjkUwCLcB/s320/stock-vector-snakes-and-ladders-board-game-snakes-ladders-start-finish-163384724.jpg" width="300" /></a></span></div>
<span style="font-size: large;"><o:p></o:p></span></div>
<div class="MsoNormalCxSpMiddle">
<span style="font-size: large;">I roll one<o:p></o:p></span></div>
<div class="MsoNormalCxSpMiddle">
<span style="font-size: large;">And then one<o:p></o:p></span></div>
<div class="MsoNormalCxSpMiddle">
<span style="font-size: large;">And then one.<o:p></o:p></span></div>
<div class="MsoNormalCxSpMiddle">
<span style="font-size: large;">There are no other numbers.<o:p></o:p></span></div>
<div class="MsoNormalCxSpMiddle">
<br /></div>
<div class="MsoNormalCxSpMiddle">
<span style="font-size: large;">With time,<o:p></o:p></span></div>
<div class="MsoNormalCxSpMiddle">
<span style="font-size: large;">I make progress.<o:p></o:p></span></div>
<div class="MsoNormalCxSpMiddle">
<span style="font-size: large;">But then, there is the serpent, <o:p></o:p></span></div>
<div class="MsoNormalCxSpMiddle">
<span style="font-size: large;">His tongue out, <o:p></o:p></span></div>
<div class="MsoNormalCxSpMiddle">
<span style="font-size: large;">Lascivious and filled with venom.<o:p></o:p></span></div>
<div class="MsoNormalCxSpMiddle">
<span style="font-size: large;">He wants to make top, bottom,<o:p></o:p></span></div>
<div class="MsoNormalCxSpMiddle">
<span style="font-size: large;">Up, down, <o:p></o:p></span></div>
<div class="MsoNormalCxSpMiddle">
<span style="font-size: large;">High, low.<o:p></o:p></span></div>
<div class="MsoNormalCxSpMiddle">
<span style="font-size: large;">He is a machine for defeat.<o:p></o:p></span></div>
<div class="MsoNormalCxSpMiddle">
<span style="font-size: large;">Inevitably<o:p></o:p></span></div>
<div class="MsoNormalCxSpMiddle">
<span style="font-size: large;">I step on his head<o:p></o:p></span></div>
<div class="MsoNormalCxSpMiddle">
<span style="font-size: large;">And down I go. <o:p></o:p></span></div>
<div class="MsoNormalCxSpMiddle">
<br /></div>
<div class="MsoNormalCxSpMiddle">
<span style="font-size: large;">And so, I roll the dice, <o:p></o:p></span></div>
<div class="MsoNormalCxSpMiddle">
<span style="font-size: large;">And move like an arthritic old man,<o:p></o:p></span></div>
<div class="MsoNormalCxSpMiddle">
<span style="font-size: large;">Space by tortuous space.<o:p></o:p></span></div>
<div class="MsoNormalCxSpMiddle">
<br /></div>
<div class="MsoNormalCxSpMiddle">
<span style="font-size: large;">In this game<o:p></o:p></span></div>
<div class="MsoNormalCxSpMiddle">
<span style="font-size: large;">There are snakes,<o:p></o:p></span></div>
<div class="MsoNormalCxSpMiddle">
<span style="font-size: large;">There are no ladders. <o:p></o:p></span></div>
<div class="MsoNormalCxSpMiddle">
<br /></div>
<div class="MsoNormalCxSpMiddle">
<br /></div>
<div class="MsoNormalCxSpMiddle">
<br /></div>
<div class="MsoNormalCxSpMiddle">
<br /></div>
<div class="MsoNormalCxSpMiddle">
<br /></div>
<div class="MsoNormalCxSpMiddle">
<br /></div>
<div class="MsoNormalCxSpMiddle">
<br /></div>
<div class="MsoNormalCxSpMiddle">
<br /></div>
<div class="MsoNormalCxSpMiddle">
<br /></div>
<div class="MsoNormalCxSpMiddle">
<br /></div>
<div class="MsoNormalCxSpMiddle">
<br /></div>
<div class="MsoNormalCxSpMiddle">
<br /></div>
<div class="MsoNormalCxSpMiddle">
<br /></div>
<div class="MsoNormalCxSpMiddle">
<br /></div>
<br />
<div class="MsoNormalCxSpMiddle">
<br /></div>
TheChronicSituationhttp://www.blogger.com/profile/06521128598189880435noreply@blogger.com0tag:blogger.com,1999:blog-1130035238983389702.post-12322865683327165842016-11-03T01:26:00.000-07:002016-11-03T05:36:29.987-07:00IT HASN'T GONE AWAY, YOU KNOW<div class="MsoNormal">
<span style="font-size: large;">Between the 1970s and the 1990s there was a campaign of violence and conflict
in Northern Ireland, begun by the IRA and carried on by Loyalist paramilitaries.
It was called The Troubles. Thousands of people were killed and many more were
injured and maimed in a low-level war fueled by historical divisions and
hatred. By 1994 everyone, including the combatants, was exhausted, and the IRA
declared a ceasefire. <o:p></o:p></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://3.bp.blogspot.com/-18gr7VSytjU/WBr0iTgBzvI/AAAAAAAAALI/xGS3oL8Jh_A3KtS2HSutiUqLz8oNtQVyQCLcB/s1600/Arndale-bomb-in-Manchester-unseen-pictures.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="210" src="https://3.bp.blogspot.com/-18gr7VSytjU/WBr0iTgBzvI/AAAAAAAAALI/xGS3oL8Jh_A3KtS2HSutiUqLz8oNtQVyQCLcB/s320/Arndale-bomb-in-Manchester-unseen-pictures.jpg" width="320" /></a></div>
<div class="MsoNormal">
<span style="font-size: large;"><br /></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">Then the negotiations began to attempt to reach a political settlement
for Northern Ireland. The negotiations were long and fractious and protracted,
and on many occasions people lost their temper and their patience. One of the
main players in these negotiations was Gerry Adams, leader of Sinn Féin, the
political wing of the Irish Republican movement that included the IRA. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">In 1995 Adams was speaking at a rally in Belfast. Someone – one of his
supporters in the crowd – shouted out a question about the IRA. He kind of
smiled, looked out at the crowd and said, in his broad Beyl-fahst accent,<a href="https://www.youtube.com/watch?v=AY3ddrc6WjE"> “They haven’t gone away, you know”</a>. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: large;">https://www.youtube.com/watch?v=AY3ddrc6WjE<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">These six words became famous, at least in Ireland. They have been used since
then to talk about anything and everything that people thought had disappeared (“Recruitment
firms: they haven’t gone away, you know”, from a headline in a newspaper in
2015). <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">Yet Adams’s original words had a deeper meaning. There was an obvious
threat behind them, and an implication that, although the IRA were on
ceasefire, and were not killing people at that very moment in 1995, it would
take almost nothing for them to return to war. They were still there, still a
threat, and although they had gone temporarily quiet, they could begin causing
chaos again in no time. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">I thought of these words – “they haven’t gone away, you know,” –
recently. They seemed apt for my own current situation. I wrote recently about
having published a novel, and about how proud and excited I was by this. I had
done a lot of work to promote it, and had planned to launch the novel in
Lisbon, where the book is set. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;"><a href="http://thedamnchronicsituation.blogspot.ie/2016/10/it-figures.html">In my last blog post</a> I wrote about how I had had to cancel a series of
launches that I had planned in Portugal, as I had had been ill and exhausted
with ME/CFS. I had organized and promoted three separate events in the space of
a week, and had to cancel them all. It was tough to take, but the truth was
that there was no way that I could have gone; I was just too drained and shaky.
<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">I slowly recovered from the difficult period and rearranged some of the
events for this week, as it is a mid-term break for me in work. I was due to
fly over to Portugal on the Tuesday of this week. I wrote in my last blog post, three weeks ago –
<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<i><span style="font-size: large;">“It is going to be a scary three
weeks until my flight; three weeks of avoiding anyone who is sniffling or
coughing, three weeks of looking after myself, and trying not to overdo things,
and to avoid getting sick. My job is to stay on the tightrope for just a little
while longer, to stay well and finally make it over to Portugal, at the second
time of asking.”<o:p></o:p></span></i></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">Of course, I didn’t manage it. I had a busy week, a few weeks ago, with
work and other things, and by the time Friday came I realized that I was
wrecked again, and that I had overdone it. This has happened before; if I don’t
fully recover from a relapse and try to get back to normal activity too
quickly, I can be back at work, even for a few weeks, and then crash again when
I just push things a little too far. If there is any little bit of
vulnerability left, unless I am careful, everything can fall apart very easily
and I am back to square one.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">So I was off work for a week, and then last week I went back on a
limited basis. But my flight was on October 31st and again, there was no way I
was recovered enough to be able to fly to Portugal and run a couple of book
launches. For the second time in six weeks, I had left an empty seat on a
Ryanair flight to Lisbon. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">At least this time I didn’t have to cancel as many events, or with as
many people. I hadn’t really started to promote the new dates yet – maybe I had
sensed that something like this was going to happen – and so I only really had
to contact the bookshops and the university where I had organized talks. It was
almost three weeks in advance, so I wasn’t letting anyone down. Still, it was
hard to take, especially a second time. And more so seeing as I can’t really
see a time in the near future, even if I get back to normal, when I am going to
have time off to go and launch this book. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">It was something I desperately wanted to do, and – surprise, surprise –
ME/CFS made it impossible. This is obviously not the first time that I have
missed something important because of illness, but two in a row was hard to
take. I may be used to it, but it doesn’t get any easier.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">I had been acting for a while there as if my condition was not really an
issue anymore for me. I have been working a lot, travelling, doing as much as I
can to fill up my life, after having such an empty one for so many years. I
have either forgotten, or chosen to ignore, the fact that I still have ME/CFS,
that it is still an issue, that I am not a “healthy”, though I act as if I am. To
paraphrase Gerry Adams, “it hasn’t gone away, you know.”<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">Far from it. It still dictates how I live my life, despite my increased
activity levels. It means that I have organized my whole existence to allow me
to live as fully as I can, without being overburdened with extra stress. I don’t
have a relationship, and haven’t really tried to begin one, as I really don’t
know how I would be able to fit one in, without having to work less or change
my life around completely. ME/CFS means that I live in a cheap (though
adequate) shared house rather than a place of my own, so my rent is affordable
and I am not forced to try and work even more to pay for it. I live a
necessarily limited life, within strict boundaries, just so I can have a little
normality in other areas, like work, travel and social life. I have had to make
choices; eliminate some things I may want so I can have other things. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">The thing is, part of what I do when I am out in the healthy world,
interacting with people who don’t have to carefully manage their limited energy
levels, is pretend that I am like them. I will talk about the condition if
someone asks, but it rarely comes up, and most people I know don’t really know
about the struggles I go through daily. They just see the professional me, or
the me who shops, or the one who turns up to social occasions. And I don’t
advertise the huge effort all of this takes to appear normal. In fact, I just
want to blend in. And so I spend so long pretending, or at least so long trying
to be just another unremarkable person living in a small city in the west of
Ireland, that I almost convince myself that that is just what I am. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">But, it hasn’t gone away, you know. And it will never go away, I can see
that. I have probably always known that, no matter how much I forget about it,
or how much I can do, or how full my life is. It is always there, like the IRA
in 1995, ready to cause chaos and mayhem and destruction, if anything goes
wrong. </span></div>
<div class="MsoNormal">
<span style="font-size: large;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: large;">Inevitably, t<a href="https://www.theguardian.com/uk/1996/feb/10/northernireland.davidpallister">he IRA did go back to violence in 1996</a>. They finally announced a permanent ceasefire a few years later, but the divisions and suspicion still exists in Northern Ireland, and that hasn't gone away, though most of the violence has. </span></div>
<div class="MsoNormal">
<span style="font-size: large;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: large;">I get my own ceasefires; periods of relative normality where I can operate as if I were healthy. But this condition is like a
terrorist organization, one that goes dormant for a time, one that can appear
like it is gone, but which is always still there, living in the cracks and
weaknesses of the system. Ready to strike. Finding a way to live with this
knowledge – and to achieve that massively difficult balance – is the hard
thing. I don’t know if I am any closer to working out how to do it. </span><o:p></o:p></div>
<br />
<div class="MsoNormal">
<br /></div>
TheChronicSituationhttp://www.blogger.com/profile/06521128598189880435noreply@blogger.com5tag:blogger.com,1999:blog-1130035238983389702.post-7782661419636948842016-10-08T02:05:00.001-07:002016-10-08T02:12:41.557-07:00IT FIGURES <div class="MsoNormal">
<span style="font-size: large;">One of the biggest things that I have done in my forty-five years is
publish a novel. It is something I have been wanting to do for years – probably
since I started reading – and I managed to do this in the last six months. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">It was a big project; I talked about it a little in my <a href="http://thedamnchronicsituation.blogspot.ie/2016/08/book.html">last blog post</a>. As
I have self-published the book, I have had to do everything myself, especially
in the area of launching and promotion, and this has been the hardest part of
the whole enterprise. Still, I launched it here in Ireland in July, and then
set about looking at launching it in Portugal – the novel is called A Year in
Lisbon and is largely set in the Portuguese capital. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">I went to Lisbon twice in August, and had set up a week of talks and
readings for mid-September, mainly in bookshops in Lisbon. I came back to
Ireland, booked flights and accommodation for that </span></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="font-size: large;"><a href="https://3.bp.blogspot.com/-FfIPiy5kLw4/V_i2w_kQ9ZI/AAAAAAAAAK0/uXsAMJyXNUUDYiaW-qKz6GKxIWWtMnNgACLcB/s1600/portugal-lisbon-old-quarter-graca-view.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="211" src="https://3.bp.blogspot.com/-FfIPiy5kLw4/V_i2w_kQ9ZI/AAAAAAAAAK0/uXsAMJyXNUUDYiaW-qKz6GKxIWWtMnNgACLcB/s320/portugal-lisbon-old-quarter-graca-view.jpg" width="320" /></a></span></div>
<span style="font-size: large;">week, and began to promote
the events. I emailed both Portuguese and English language newspapers, radio
stations, journalists, libraries, language schools (the book is set in the
world of English-language teaching), book bloggers and anyone I could think of,
trying to stir up a bit of interest in the book and in the launches. <o:p></o:p></span><br />
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">And then I began to feel bad. I am still not exactly sure what
precipitated the whole episode, but there were doubtless a number of factors
that contributed. I had been pushing things a little, doing a lot of
travelling, a lot of walking around Lisbon in thirty degree heat. And I had
become a little obsessed about promoting the book and the launches, and had
entered a kind of dangerous head-space where rest and pacing wasn’t high on my
agenda. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">There were a couple of other things at the time that may have added to
the whole mess. Whatever the ultimate cause was, I found myself semi-exhausted,
a bit dizzy and also sleepless for a couple of weeks. It was a strange episode,
one that I hadn’t exactly experienced before, and I wasn’t sure exactly how to
get out of it. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">Meanwhile I was still trying to prepare for my Lisbon launches, figuring
that I would be over my little blip and recovered in time to go back to
Portugal for the week of events I had planned. I had three weeks between
starting to feel unwell and the day of my flight, and thought that that would
be enough time. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">The week before I was due to fly over, I tried to get back to doing some
normal stuff, teaching a few classes, going for short walks. By the Thursday,
three days before my flight, I knew that it wasn’t going to happen. There was
no way I would have been able to catch an early-morning flight, make it over to
Portugal, do some readings and survive for a week in Lisbon, before coming back
and starting back into full-time work. I was too weak, shaky, breathless,
dizzy. I cancelled everything. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">Like anyone with ME/CFS, I have cancelled many, many things during the
course of my illness. I have missed countless flights, parties, family events,
funerals, classes, holidays, celebrations and reunions of all kinds. Cancelling
things and missing things has been a way of life for me for as long as I can
remember. But this was the biggest blow yet. Publishing this book is the single
biggest thing I have done, and the week of launches there promised to be one of
the most important of my life. To have to email all of those people to cancel
the whole thing was a bitter pill. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">For a few days I was devastated, and then the realities of my life here
in Ireland kicked in, and I became more concerned with being able to just
function here, never mind going back to Portugal. I had a busy term of teaching
ahead, and somehow had to ensure I could actually get back to my normal life in
Ireland. That became the priority. And the venues and bookshops that had
planned my launches were understanding about the cancellation; it even turned
out that a few people I was in contact with had friends or family members with
ME/CFS, and so understood a little of my situation. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">In fact, they all suggested that we rearrange things for another, future
date. I realized that I could probably take a week off at the beginning of
November; there is a Bank Holiday that week anyway so I would miss less work,
and so that became the new plan. The flights and accommodation I had booked for
September had been paid for and were non-refundable, but this was now something
I was determined to do, and so I have booked another return flight for November
1<sup>st</sup>. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">Slowly, in the last few weeks, I have come back to myself a little. I have
gradually increased activity, have gone back to work, with difficulty, and am
now close to where I was, pre-mini-relapse. My new flight is in just over three
weeks’ time, and the events begin in three and a half weeks. I will have to
start publicising everything again very soon, and then think about booking
accommodation.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">The truth is that I am naturally apprehensive. I am more or less ok at
the moment, but one cold or flu or sore throat between now and November, and
all my plans collapse again in a heap. I am reluctant to start publicising
something that I have already cancelled once, and which there is a chance that
I could have to cancel again, if anything small goes wrong. I have made
progress in my health in the last few years, but I am still vulnerable, and any
small issue that crops up could make it impossible for me to travel. Cancelling
once was bad, having to cancel a second time would be devastating. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">At the time of the first cancellation, I was upset, disappointed and saddened,
but of course not really surprised. Cancelling things has become a way of life
for me in the last two decades. Yet, once I had time to get used to the idea, it
also felt kind of fitting: the story of the writing and publication of this
novel is totally tied up in my history of ME/CFS. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">I began writing precisely because it was the only useful thing that I
could do for years – I could do it in short bursts, and when I felt up to it. And
Lisbon was where this whole sorry saga began: I was living there in 1996 and 1997
when I began to get a lot of illnesses, constant infections and strange
symptoms that eventually developed into post-viral fatigue, and from there to
ME/CFS. I wrote a lot in the following years, and set a lot of stories back in
Portugal – I had been forced to leave Lisbon because of illness, and it felt like
my story there was unfinished. I think that writing about the place was a way
of visiting there when I couldn’t physically do it, a way of conjuring up a
location that had been important to me for a short period. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">So to write a book set in Lisbon, and to publish it and plan to launch
it there – and then to have all of those plans destroyed by a period of
ill-health; well, I kind of appreciated the irony. It was almost fitting, in a
horrible kind of way. If figured. My hubris was punished. I had begun to act
like ME/CFS was no longer an issue for me – publishing a book, travelling and
working close to full time – so it was almost logical that it would intrude
again, to fuck up my Lisbon plans. My condition stopped me from returning to
Lisbon nineteen years ago (eventually leading to me writing a book about the
place), and it came back to prevent me from launching that very book, in that
very same city. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<br />
<div class="MsoNormal">
<span style="font-size: large;">Still, I am lucky enough that my relapse was temporary, and that I am
well enough now to consider rearranging everything, and to give it a second go.
It is going to be a scary three weeks until my flight; three weeks of avoiding
anyone who is sniffling or coughing, three weeks of looking after myself, and
trying not to overdo things, and to avoid getting sick. My job is to stay on
the tightrope for just a little while longer, to stay well and finally make it
over to Portugal, at the second time of asking. Fingers crossed. </span><o:p></o:p></div>
TheChronicSituationhttp://www.blogger.com/profile/06521128598189880435noreply@blogger.com2tag:blogger.com,1999:blog-1130035238983389702.post-36347267886763695932016-08-11T09:13:00.001-07:002016-08-11T09:20:49.887-07:00BOOK<div class="MsoNormal">
<span style="font-size: large;">I have just published <a href="http://ayearinlisbon.com/">a novel</a>. At the moment I am on holidays from
teaching, and am promoting the book, organizing launches, contacting bloggers
and journalists, Facebooking and twittering. It is exhausting, but a different
kind of exhausting from the usual.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: large;"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://2.bp.blogspot.com/-v1VNRHHaSjo/V6yjmDSAGwI/AAAAAAAAAKg/ZUphFlQS4sgAlxBcEaOy45S3WFVPnYyzwCLcB/s1600/Cover%2B3D%2B1.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="https://2.bp.blogspot.com/-v1VNRHHaSjo/V6yjmDSAGwI/AAAAAAAAAKg/ZUphFlQS4sgAlxBcEaOy45S3WFVPnYyzwCLcB/s200/Cover%2B3D%2B1.jpg" width="146" /></a></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">I have been writing on and off for years. I used to write a lot of poetry
in my teens and early twenties, and I really started up seriously again with
the writing about 10 years ago when I was in the midst of dealing with ME/CFS,
and I wasn’t managing to make any progress with my health. At the back of my
mind was the idea that, if I cannot work, at least I can write. It was something
I could do when I was able: it was totally flexible; if I couldn’t sleep, I
could at least write for 15 minutes. It was undemanding, physically, something
I could do from my bedroom. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">More than that, I think, it was an escape from a life that had obviously
been grinding me down. I was having sleep problems at this time; my energy
levels were very poor; I wasn’t working; I had all kinds of food intolerances; I
was still living with my parents, in my thirties. I had not really managed to
begin dealing with ME/CFS, or to make any progress. Writing allowed me a way
out of a dark, empty time.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">Also, it allowed me a measure of control. I had almost no control over
my life at that time, in the mid 2000s. I couldn’t really travel, I couldn’t
work, I had no money. And when you have a long-term illness, control is one of
the first things to go, and one of the main things that you miss. So creating a
fictional world, where I controlled exactly what happened, and where I could
live out – through the characters that I created – some semblance of a life
that was denied to me at the time, was a way of coping. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">I wrote away in silence for years, half-writing novels, always having
difficulty finishing things though learning slowly how to do it. Then I did a
writing workshop, met some people, and got involved in a writing group that put
some discipline on my writing habits, gave me confidence and pushed me into
actually following through and finishing a book. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">I did finish the book, and went on to write more. I made some
half-hearted attempts to get a literary agent, and when nothing came of that, I
left the book in the proverbial drawer (on my hard drive), and thought no more
about it. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">After a few months, a Spanish friend of mine, a writer, mentioned that
he had self-published a book, and suggested I do the same. I wasn’t enthusiastic
originally, but as time went on I got more and more interested in the idea. Eventually
I sat down, edited the book, and looked into how to do it. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">It turned out that it was doable. There is a chronicle of how it came
about on the<a href="http://ayearinlisbon.com/blog/"> blog</a> on the book’s website, if anyone is interested. It took me
about six or eight months to get it all together, but I published A Year in
Lisbon in printed book and on e-book about a month ago. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">I had a launch two weeks ago, which went better than I could have
expected. It was something I had been dreading for weeks before. I am a
language teacher, and am used to standing up in front of people and talking,
but this was different. It helped that most of my friends and family were in
the audience, and that calmed me down. I had even borrowed a barstool from a
local pub, as I wasn’t sure I was going to be able to stand up for the whole
hour of the speech and the reading of extracts, and the answering of questions
after, but I managed it in the end without using the stool. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">Afterwards I was as drained as I have been for a long time. It was
simple nervous exhaustion, a long build-up followed by a very intense two
hours, talking, reading, selling books, chatting again. My nervous system had
had enough, I went home straight after and did nothing for twelve or fourteen hours.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">I have been able to do all of this, though, it has not been too much for
me. I have not left ME/CFS behind, but I have made significant progress, and am
now mostly able to work close to full-time (with effort) and live a kind of
life that I could not have imagined, when I started writing, back in the depths
of illness and disability. For that fact, I feel incredibly lucky.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">There is nothing about ME/CFS in the book. I deliberately did not write
about it, none of the characters mention it, it is a world where long-term
illness does not play a role. This is not really surprising; I wrote to escape,
to enter a universe where the defining aspect of my life was not my condition. At
the time I physically could not have written about it anyway, it was too much,
I was too in the middle of it all. Writing for me was a way of forgetting. Strangely
though, I am still writing fiction, and have found that I now <i>have</i> to write about a character with
severe ME, this story is demanding to be written. That will come out,
eventually. I think it is obvious that I take about a decade to process stuff!<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">The other link to my whole ME/CFS story is the city of Lisbon. The novel
is set there, is partly named for the city, and this is no accident. I lived in
Portugal from 1995 to 1997, and this was the last place where I was fully
healthy. My last year in Lisbon was when I began to show signs of the beginning
of post-viral fatigue-like symptoms, that eventually developed into ME/CFS. I was
forced to leave Lisbon, in fact I went home at Christmas, 1997, unwell but
intending to return, and was not able to go back for a full twelve years. I had
left a lot of my stuff there, which friends had to send over to me in Ireland. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">So returning to Lisbon, in the first years of my illness, became a
symbol of wellness. And as the years passed, and the idea of travelling
anywhere, let alone back to Portugal, became more and more distant and
impossible, I found myself writing more and more about Lisbon, setting stories
there, giving my characters these complicated relationships with the city, putting
a lot of my feelings about my experiences of being in Portugal into the
writing. Eventually, what came out was the novel I have just published, <a href="http://ayearinlisbon.com/">A Yearin Lisbon</a>. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">I was back in Lisbon last week, and am going there again next week, to
sell some books and to organize a book launch. It is fascinating being there again,
I still know one or two people there, and the city itself is very, very
familiar to me, even after nearly twenty years: the smells, the hills, the
soft, sibilant sound of spoken Portuguese, the heat, the crazy tiny alleyways
and steps of the Alfama district, like some kind of bizarre Escher painting. It
is a city with a very strong personality, something that I think I have
captured some of in what I wrote. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">And it is such a joy to be able to do all of this. To walk around the
streets of a southern European city in the height of summer, in 30º heat; to be
able to manage air travel, with all of the queues and waiting and frustrations;
to be able to organize launches and media and all of the tedious promotional
side of the business. None of it is easy, all of it is an effort, but it is
doable, and that is something. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<br />
<div class="MsoNormal">
<span style="font-size: large;">And my lost decade and a half is driving me on, I believe. I have lost
so much, so much time and potential and money, so many opportunities and
possibilities, that I am aware that there is no more time to waste. Without all
of those tough years I probably would never have taken the plunge to go ahead
and publish. It is an adventure, if nothing else and something, in the end, I
had to do. </span><o:p></o:p></div>
TheChronicSituationhttp://www.blogger.com/profile/06521128598189880435noreply@blogger.com0tag:blogger.com,1999:blog-1130035238983389702.post-47356393627409310122016-04-13T15:33:00.001-07:002016-04-13T15:45:30.875-07:00INTOLERANT<div class="MsoNormal">
<span style="font-size: large;">One of the weirdest and most frustrating aspects of this whole nasty
adventure for me is the area of food intolerance.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">I have been dealing with ME/CFS for more than eighteen years now, though
it was not until the third year that my food intolerances really kicked in. And
it began in kind of a strange way.</span></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="font-size: large;"><a href="https://2.bp.blogspot.com/-qY4GWNhmsjk/Vw7JBIqanCI/AAAAAAAAAKA/hwUjg8tiXHQKYqgvqQC3z4UAyxGcXDg5gCLcB/s1600/mzhwuyngjt7mzmrjmliw.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="180" src="https://2.bp.blogspot.com/-qY4GWNhmsjk/Vw7JBIqanCI/AAAAAAAAAKA/hwUjg8tiXHQKYqgvqQC3z4UAyxGcXDg5gCLcB/s320/mzhwuyngjt7mzmrjmliw.jpg" width="320" /></a></span></div>
<span style="font-size: large;"><o:p></o:p></span><br />
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">I was dealing with a relapse, it was probably the year 2001, I was
struggling. I got a cold which I could not shift. Someone suggested that dairy
products can contribute to the formation of mucus, at that time I had wheezing
and a heavy cough that I could not seem to recover from. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">I was eating normally at that stage, dairy, wheat, gluten, the usual
stuff of a European diet. I gave up dairy for a month, went on to soya milk and
margarine. It didn’t really help my chest, so I started eating cheese and milk
again. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">Within a day or two I noticed some bad stomach symptoms, diarrhoea or
constipation, cramps, bloating. I eased off on the dairy, and the stomach
symptoms improved. I tried on a number of occasions to reintroduce milk and
cheese and butter into my diet, but each time I had the same experience. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">My mistake, in retrospect, was to try and return to my previous diet
straight away, without building it up slowly. If I had just taken a little
butter, milk and cheese the first week that I returned to it, I could probably
have gotten away with it and gradually returned to eating dairy as normal. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">Instead, what happened was a kind of avalanche. I soon found that my
digestive symptoms returned, and after a process of elimination I realized that
it was bread that was causing them. Soon it wasn’t just wheat, but all gluten
that was implicated. Then this was linked to yeast and corn, and in fact
anything that I had previously consumed with dairy products. It was as if some
trigger had been turned on, and now I was hypersensitive to certain foods, and
also liable to react to certain others. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">And that has been the case for the last fifteen years. I still cannot
eat any real quantity of dairy or gluten, though I can get away with a slice of
apple tart occasionally, or some dairy mixed in with a soup. Yet they continue
to cause me digestive problems (though in general food doesn’t seem to effect
my energy levels and general health). <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<div class="separator" style="clear: both; text-align: center;">
<a href="https://2.bp.blogspot.com/-I2PHnCupKQo/Vw7L6k-xXgI/AAAAAAAAAKM/JjbMsL14hWQXPke1CVepfOpGbe0STmCrwCLcB/s1600/stomach%2Bache.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://2.bp.blogspot.com/-I2PHnCupKQo/Vw7L6k-xXgI/AAAAAAAAAKM/JjbMsL14hWQXPke1CVepfOpGbe0STmCrwCLcB/s1600/stomach%2Bache.jpg" /></a></div>
<span style="font-size: large;">I also then began reacting to certain medications and supplements. To
this day I cannot take D-ribose or any of the detox supplements like Spirulina.
Any time I start a new supplement, it has to be on a tenth or a twentieth of
the normal dose or I get extreme digestive reactions. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">The next major food area that I began to lose was an unusual one. I began
to have real trouble digesting oils. I had been living in Portugal for the
three years previous to my falling ill, and had taken to using olive oil on
salads, potatoes, and even bread at times. I used it a lot. Within a few years
I found that olive oil was now out too, it caused me a lot of discomfort with
only a small amount. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">So I branched out. I ate a lot of salads as I was trying to eat
healthily, and so tried a succession of cold pressed oils in salad dressings.
Hazelnut oil, pumpkin seed oil, sesame oil, rapeseed oil, avocado oil, I was
able to use some of them for a while, but I always ended up becoming intolerant
to each one. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">The processes by which these intolerances developed were so bizarre that
I still have to question whether they were real. For some oils, like avocado,
as soon as I tried it I reacted to it, and was never able to eat it. In the
case of avocado oil, after I tried it and reacted to it, I also found that I
was reacting to avocados themselves, something I had never had a problem eating
before. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">Others seem to become “infected” by other problem foods. Once or twice
someone else cooked something in olive oil without me realizing, and I used
whatever oil at that time I was not intolerant to, let’s say sesame. It I used
enough of it, and if it mixed with an already problematic oil like olive, then
I could develop a sesame intolerance too, and this would never go away. One
instance of eating an oil in conjunction with another problematic substance
could leave me intolerant to that oil for life. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">The last way of forming an intolerance is connected to taking a break
from the particular food for a while, and then trying to eat it again. This
first happened with dairy, as I explained above, I didn’t eat it for a month, then
when I started again, bam! intolerant. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">This has happened in the last two years with my last two cold-pressed
oils. A couple of years ago I went to Spain for six days. At that time I was
eating Hazelnut and Walnut oils on salads. I took some walnut oil with me on
holiday, though not hazelnut. When I came back, I tried some hazelnut oil on a
salad, only a very small amount. Immediately I reacted to it, bloated stomach,
cramps, diarrhoea. At that stage I hadn’t eaten the hazelnut for about ten
days, including a couple of days before the holidays. And that was that, having
eaten it regularly for years, once I laid off it for a week and a half, as soon
as I tried it again it was like swallowing acid. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">And so two weeks ago I lost my last oil. Again, holidays in Spain, eight
days. I took some walnut oil with me but was eating out a lot and so didn’t use
it at all. I came home, tried a couple of drops on some food, then tried to
increase it that week and….Bam! again. Bloating, cramps, diarrhoea. Ten years
of eating walnut oil and now I can only stomach tiny amounts.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">So now I am having dry salads. Vinegar is a problem for me too, so there
is really nothing left I can put on lettuce, tomatoes, cucumber. I suppose I
can try lemon juice. At least I have found goat’s butter, so I can cook with
that at times. But this business of losing foods is absolutely infuriating. It
is one of the things that has most depressed me about this fucking plague,
among a long list. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">The thing is, I thought that I had improved, in terms of intolerances.
In recent years I have been able to stomach small amounts of previously very
problematic foods. I can cook with small amounts of olive oil (I think it is
the cold, raw oil that gives me more problems), and can also eat small amounts
of dairy and wheat, though not without a little discomfort and not in anywhere
near the same quantities as before. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">And I have not developed a new intolerance to anything for a while.
Until now, of course, until losing my last cold-pressed oil a couple of weeks
back. I have been doing well in general, working close to 70% or 80% of a full
week, still struggling but less than in the past. But the shadow of food intolerance
is always there, just as the condition as a whole is constantly lurking behind
a seemingly normal life. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">Losing the walnut oil depressed me for a few days. It is the finality of
the experience that is so hard to take, all of these foods that I have become
intolerant to in the past have never been able to reappear in my diet. As far
as I can see, once a food gives me symptoms then that’s it. I may be able to
sample small amounts in the future, but as for eating it regularly, that’s no
longer an option. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<br />
<div class="MsoNormal">
<span style="font-size: large;">It is all so fragile. My painstakingly constructed semi-recovery is
real, but it is not secure, and it does not exempt me from this bizarre, dispiriting
experience of finding – for no good reason – that something I have eaten and
enjoyed for years is now doing me harm. </span><o:p></o:p></div>
TheChronicSituationhttp://www.blogger.com/profile/06521128598189880435noreply@blogger.com0tag:blogger.com,1999:blog-1130035238983389702.post-88047797749402691282015-12-26T08:48:00.001-08:002015-12-26T12:44:40.833-08:00THIS MUCH I HAVE LEARNED.<div class="MsoNormal">
<span style="font-size: large;">I have recently passed my eighteenth sickiversary (copyright
<a href="http://nopostergirl.com/">nopostergirl.com</a>), the anniversary of the date that I mark as the beginning of
this long, arduous adventure with ME/CFS. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: large;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: large;">With luck, if you have to experience anything for eighteen years, you
are going to learn something. And here, in no particular order, is some of what
I have learned in those almost two decades. I have to stress that
everything I am talking about is related to my own particular experience, and I
am not expressing any kind of general statements on the condition. Though of course much of this may make sense to others in the same situation. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: large;"><br /></span></div>
<div class="MsoNormal">
<b><span style="font-size: x-small; mso-ansi-language: EN-IE;"><span style="font-size: large;">A. Doing too
little is almost as bad as doing too much</span><o:p></o:p></span></b></div>
<div class="MsoNormal">
<span style="font-size: large;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: large;">Again, to stress, this is my experience. </span></div>
<div class="MsoNormal">
<span style="font-size: large;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: large;">Like with a lot in life, the trick is to
find the golden mean, the happy medium, the balance between overdoing things
and resting too much.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: large;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: large;">I have experienced this necessity for balance again and again. One area is sleep. At the
beginning of my ME/CFS saga I was sleeping fourteen hours a day, as I was so
exhausted I thought that I needed this much sleep. Of course all of this sleep
was contributing to the exhaustion. This was pointed out by the first ME/CFS
doctor that I saw. Once I regulated my sleep pattern, started going to bed at a
regular time, and forcing myself to get up at 8a.m. every morning and not sleep
during the day, I began to feel human again. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: large;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: large;">On many occasions during a relapse I have been so paranoid about making
things worse that I have ended up sleeping during the day, and taking every
opportunity to lie flat and rest. And over and over again I have found that as
the relapse has gone on I have become worse, not better, often taking even more
time to rest, even more time to lie down, and have done less and less until it
seemed impossible that I could do anything at all. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: large;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: large;">It was only when I returned my sleep to a normal rhythm and stopped
lying down at every opportunity that I was able to get out of the hole I was in
and get back to some slight activity. It is clear to me that something about
shutting down all activity has a very negative effect on my central nervous
system, and somehow causes it to slow down even more.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: large;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: large;">Of course a return to activity has to be careful, gradual, bit by bit by bit, but it is necessary if I want to make any kind of progress. Doing too much, being too active, pushing myself at the wrong time, these are all dangerous to my wellbeing. But doing nothing, being over-careful, over-resting, is almost as bad, and has led to a kind of spiral of increased disability in the past. </span></div>
<div class="MsoNormal">
<span style="font-size: large;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: large;">Getting the balance right is very difficult, but it is important. </span><br />
<span style="font-size: large;"><br /></span>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://2.bp.blogspot.com/-3yhhCKfuCuk/Vn7JcB-rlDI/AAAAAAAAAJs/PnI7pEKHkR8/s1600/sleep.gif" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="222" src="http://2.bp.blogspot.com/-3yhhCKfuCuk/Vn7JcB-rlDI/AAAAAAAAAJs/PnI7pEKHkR8/s320/sleep.gif" width="320" /></a></div>
<span style="font-size: large;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: large;"><br /></span></div>
<div class="MsoNormal">
<b><span style="font-size: x-small; mso-ansi-language: EN-IE;"><span style="font-size: large;">B. Sleep is
vital (to feel well, and as a marker)</span><o:p></o:p></span></b></div>
<div class="MsoNormal">
<span style="font-size: large;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: large;">Naturally, if someone has any medical problem, sleep is important. What
I have found though, is that it is important to have a<i> rhythm </i>to my sleep, and to maintain this. In other words, to go to
bed at a similar time each night, and get up at a similar time each morning. If
this is broken for any reason, then things are going to be that much more
difficult. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: large;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: large;">If sleep is disturbed for any reason (and this has happened on a number
of occasions over the 18 years), then I know that something is wrong. Recently,
I stopped using the <a href="http://thedamnchronicsituation.blogspot.ie/2015/03/breathing-2.html">rebreathing mask</a> that had been increasing my levels of
carbon dioxide, and which had been helping me for a while. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: large;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: large;">I stopped it after a particularly heavy relapse that I fell into about
six months ago. The mask was only making me feel worse at the time and I
thought I could do without it. I did manage to recover, and get back to some
work, but I was a long way off where I had been before. My chest was constantly
wheezing, and I woke most nights for an hour or more. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: large;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: large;">Then I went back to the mask, and the sleep improved immediately. The
state of my sleep is a pretty reliable marker of how I am, and if I need to
change anything. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: large;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: large;">The other point, as I have already mentioned, is that it is possible to
sleep too much. Anything over seven and a half hours is probably excessive, and
stops being something positive and becomes more of a drag on my whole system. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: large;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: large;">I had sleep problems for a long time, and one of the ways I solved them
was that I stopped trying to sleep eight or nine hours and instead settled for
between seven and seven and a half solid hours. Quality <i>and </i>quantity is important, where sleep is concerned. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: large;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: large;"><b><span style="font-size: 14.0pt; mso-ansi-language: EN-IE;">C. The
importance of Carbon Dioxide (CO2) and Oxygen (O2)</span></b><o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: large;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: large;">My last two years have been a rollercoaster of relapses and recovery. A
lot of it has circled around my use of a rebreathing mask and <a href="http://thedamnchronicsituation.blogspot.ie/2014/02/breathing.html">breathing exercises</a>, both of which increase the levels of available CO2 in my system. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: large;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: large;">I have written a lot about this<a href="http://thedamnchronicsituation.blogspot.ie/2014/02/breathing.html"> before</a>. The CO2 is essential in the
process of energy production which also involves oxygen, but the oxygen is
useless without the carbon dioxide. From experience I am discovering how vital
having enough CO2 is, for me at least. Since restarting wearing the mask I have
improved steadily, and am now relatively active, working two thirds of a week
and able to go on holiday. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: large;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: large;">For now at least I have a kind of handle on the CO2 situation, am
increasing my use of the mask and still improving slowly. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: large;"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://1.bp.blogspot.com/-RKLrNdwAr3o/Vn7Em5cNA_I/AAAAAAAAAJc/hvDTWMYOSdU/s1600/2-sympathetic-nervous-system-1-638.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-size: large;"><img border="0" height="300" src="http://1.bp.blogspot.com/-RKLrNdwAr3o/Vn7Em5cNA_I/AAAAAAAAAJc/hvDTWMYOSdU/s400/2-sympathetic-nervous-system-1-638.jpg" width="400" /></span></a></div>
<div class="MsoNormal">
<o:p><span style="font-size: large;"><br /></span></o:p></div>
<div class="MsoNormal">
<span style="font-size: large;"><br /></span></div>
<div class="MsoNormal">
<b><span style="font-size: x-small; mso-ansi-language: EN-IE;"><span style="font-size: large;">D. The Autonomic
Nervous System (ANS) is key</span><o:p></o:p></span></b></div>
<div class="MsoNormal">
<span style="font-size: large;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: large;">There seems to be two main systems of the body involved in ME/CFS in
general, the immune system and the central nervous system. I don’t really know
what role the immune system is playing in my condition, but the <a href="http://thedamnchronicsituation.blogspot.ie/2013/11/dsyautonomia-autonomic-nervous-system.html">autonomic nervous system</a>, the part of the central nervous system that controls the
automatic, unconscious elements of the body’s function, is absolutely central
in my particular case. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: large;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: large;">The ANS controls breathing, pulse, heart rate, blood pressure, sweating, body temperature, all of the things that you have little or no conscious control over. If any of
these elements are out of balance, it is the ANS that is effected. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: large;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: large;">Nearly everyone with ME/CFS has some of the following: difficulty
standing, palpitations, nausea, sweating, poor temperature control, fast or
slow pulse, shallow breathing, light-headedness. These mark a problem with the
ANS. It is easy to say this, but harder to figure out why, or to fix what is
wrong. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: large;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: large;">The rebreathing mask, and the increase in CO2 that it produces, is one
way that I have been able to tackle the ANS disfunction. In the Breakspear
clinic, where I have been treated, my doctor called it “<a href="http://thedamnchronicsituation.blogspot.ie/2013/11/dsyautonomia-autonomic-nervous-system.html">dysautonomia</a>”. Other
people have tackled this by meditation, mindfulness, or even HOT. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: large;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: large;">This last approach is <a href="http://www.dizziness-and-balance.com/treatment/rehab/tilt%20training.html">Home Orthostatic Training</a>, and involves retraining
yourself to be able to tolerate being upright or standing. It is something I
hope to start in the new year, and something I will write further about.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: large;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: large;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: large;"><b><span style="font-size: 14.0pt; mso-ansi-language: EN-IE;">E. Do not
despair</span></b><b>.<o:p></o:p></b></span></div>
<div class="MsoNormal">
<span style="font-size: large;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: large;">This is the last one, but not the least. And is one of the hardest
things to do. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: large;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: large;">I know how hard it is not to lose hope, as I have despaired on more than
one occasion. About four and a half years ago I had a pretty severe relapse and
entered into a deep depression. I had had pretty much all I could take, and had
lost the ability to keep on coping with what seemed like a totally intractable,
insoluble condition. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: large;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: large;">I just wanted it all to stop, to be honest. The strain of, what was then
13 years of illness had taken its toll, I had lost everything, and couldn’t see
a future for myself. I was irrational in my despair, but that was
understandable, as I had made so little solid progress in such a long time. In
fact it felt like I had just got worse. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: large;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: large;">The thing was, there didn’t seem to be any way to fix or improve things.
And yet, with time and some luck, and the support of family, with patience and perseverance
and determination and more luck, I have made progress. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: large;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: large;">I have just come back from Spain, where I went to do some travelling,
spending some days in Malaga and then on to Cadiz. One morning in Cadiz I
rented a bicycle and cycled around the edge of the city there, went to the
castle and walked around, cycled back to where I was staying. This was all
limited by my condition, but with careful management it was possible. I am home
now, and feel ok, managed to enjoy Christmas with my family, and have survived
the busy last few weeks pretty well.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: large;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: large;">During the academic year I am working at about 60% or 70% of a full week and have a life of sorts. None of this is easy, none of it is without
sacrifices or compromises, and none of it is guaranteed to last, but for now I
am more active than I could ever have imagined in the pit of my despair, four
and a half years ago. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: large;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: large;">It is easy for me to say, of course, from my fortunate position as
someone who has managed to put some kind of life together. But I do think that
it is important to hold on to the hope of improvement, even in the darkest
times. Four and a half years ago I was sure that I was done, finished. But we
really have no idea what the future will bring, and how things can change. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">It is not always easy, but it is necessary to hold on through the dark
times, and keep the despair at bay. This much, at least, I have learned. </span><o:p></o:p></div>
TheChronicSituationhttp://www.blogger.com/profile/06521128598189880435noreply@blogger.com3tag:blogger.com,1999:blog-1130035238983389702.post-45592104016357438132015-08-28T15:47:00.000-07:002015-08-28T15:50:20.746-07:00INTROVERSION AND ME/CFS<div class="MsoNormal">
<span style="font-size: large;">I read a lot, but it is not often that I come across a book that changes
my whole way of looking at my life. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">I was listening to a TED talk on the TED radio hour. Most people may
know what this is, a series of talks by people who are innovators or experts in
their field, in all areas of human endeavour and investigation.</span></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="font-size: large;"><a href="http://1.bp.blogspot.com/-rZbDe9Nc8cY/VeDk0aEW6XI/AAAAAAAAAJM/tIneVRCU6UA/s1600/ted.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="177" src="http://1.bp.blogspot.com/-rZbDe9Nc8cY/VeDk0aEW6XI/AAAAAAAAAJM/tIneVRCU6UA/s320/ted.jpg" width="320" /></a></span></div>
<span style="font-size: large;"> <o:p></o:p></span><br />
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">This talk was by a woman called Susan Cain. She was talking about her
own experience with being an introvert in a world built for extroverts, and the
power and value of introverts. I found the talk fascinating and identifiable,
and looked for her book immediately after the programme finished.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">Her book is called, <i>Quiet: the
power of introverts in a world that can’t stop talking</i>. She goes into her
own experiences, and how it took her decades to learn about herself and how her
need for solitude, her quiet, undemonstrative manner, her discomfort with noise
and fuss, were not negatives, as she felt society portrayed them as, but
actually strengths, if used correctly. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">To actually define this introvert/extrovert dichotomy, an introvert is
generally someone who looks inwards, who is “predominantly concerned with their
own thoughts and feelings” to quote the OED. An extrovert, on the other hand,
is “an outgoing, socially confident person….predominantly concerned with
external things.”<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: large;">(If you want to discover if you are an introvert or extrovert, you can
take her test <a href="https://www.psychologytoday.com/blog/quiet-the-power-introverts/201103/quiz-are-you-introvert-or-extrovert-and-why-it-matters">here</a>)<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">A main point in her book is that the introversion/extroversion dichotomy
is actually physiological, to a certain extent. It is about what kind of
central nervous system you have. There have been more and more studies in this
area recently, and they have thrown up some interesting findings. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">One is that introverts are what is called <i>high-reactives</i>. That means that, when tested as babies, they react
strongly to even mild sensory stimulation, like noise or play or someone
talking to them. They tend to wave their limbs around and adopt very expressive
faces in reaction to outside stimuli.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">Extroverts, on the other hand, even as babies, tend to stay placid and
unresponsive to stimulation. Of course the studies had to follow these babies
into adulthood and retest them then to discover if they were introverts or
extroverts. But the correlation was quite close, babies who grew into
introverts were highly-responsive, extrovert babies needed a lot of stimulation
to give a response.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">The indication is that introverts’ central nervous systems are wound
that little more tightly. They are very sensitive to even small amounts of
outside stimulation. This is why they can feel overwhelmed easily, and need to
retreat to a quiet, calm place where they can be on their own.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">Extroverts, on the other hand, are energised by activity, people, noise,
sensory experience. Their nervous systems are set so that they need a lot of
stimulation, they are “low-reactive”. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">The following I found interesting: <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: large;">“Once you understand introversion and extroversion as preferences for
different levels of stimulation, you can begin consciously situating yourself
in environments favourable to your own personality – neither overstimulating
nor understimulating….. you can organize your life….. in what I call ‘sweet
spots’… Your sweet spot is the place where you are optimally stimulated.”<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">Introversion brings with it certain other characteristics. Introverts
tend to have “an aversion to novelty”. It takes them a while to deal with
newness and change. They tend to be sensitive to nuance, and will pick up on
subtleties that extroverts will miss. They also tend to have a complex
emotionality, which makes sense for someone who is prone to self-examination.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">Anyone who has any experience with ME/CFS will possibly – as I did –
notice a certain correlation here. Introversion sounds a lot like many people’s
experience of this condition, heightened sensitivity to external stimulation, a
tendency to feel overwhelmed easily, a frequent need for rest, quiet and
solitude. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">In the book the author talks to a university professor, Professor
Little. He got a reputation as a fascinating and entertaining lecturer, but in
fact this putting on a show in his lectures was a strain on him as he was
fundamentally an introvert. He developed pneumonia, and became quite ill. One
of his observations on this is quoted – “Professor Little believes that
prolonged acting out of character may also increase autonomic nervous system
activity, which can, in turn, compromise immune function.”<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">It was here that the penny dropped for me. Again, if anyone knows
anything about ME/CFS this would resonate. This was the first time that I had
thought about introversion or extraversion, and about what that would mean for
me and my experience with this condition.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">It became clear to me that I have strong introvert tendencies, and did
have even before contracting ME/CFS. I have never really had any problem being
alone, in fact I have always needed it. I am reflective, don’t really care
about fame, wealth or attention. I am risk-averse, dislike conflict and am
sensitive to stimulation. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">This does not mean that I am antisocial, or dislike people. I am in fact
quite a social person, and enjoy being with people I like and feel comfortable
with. Being an introvert does not necessarily mean that you are a loner with no
friends. It just means that you relate to people in a different way than
extroverts do. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">And yet, recognizing these introvert tendencies that I have, I realize
that I have spent a good portion of my life fighting against them. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">Pushing yourself to a certain extent I think is a good thing, the “comfort
zone” is a fairly recent concept, and it is always mentioned in the concept of “getting
<i>out </i>of your comfort zone”. It is good
to stretch yourself, to try new things, to put yourself in unfamiliar
territory. Yet I don’t think that I really recognized what my comfort zone was
in the first place, and somehow felt bad about myself for even <i>having</i> a comfort zone. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">Teaching is a case in point. I have been a language teacher for about 20
years now. At first I found it a struggle, as being up in front of a class felt
unnatural and a strain. But it is something that I am actually good at, and do
enjoy, and it got a lot easier. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">When I started teaching full time, I was in my twenties and working with
a lot of people my age. A lot of the other teachers would go out socially after
work – we often taught till ten o’clock in the evening, teaching night classes
in English – and I went out a few times, but always ended up feeling drained
and unable to converse on even a basic level. This was when I was perfectly
healthy. The day in front of people had sapped me, left me unfit for anything
but going home and being on my own. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">And it was only when I started teaching full time, back in 1994, that I started
getting constant infections, colds, flus, I was always ill. This constant
illness led to increased stress, more illness, and finally to post viral fatigue
that didn’t go away, and from there to ME/CFS. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">I am not saying that being an introvert caused my ME/CFS, but it was one
element in a complex interaction of causes that contributed. Or rather, my not
facing up to the reality that I am someone who needs solitude at times, someone
who can only deal with a limited amount of stimulation was one of the factors. I
remember many occasions feeling so bad about myself for not living up to the
outgoing, charismatic person that I felt I wanted to be, that I thought I <i>should</i> be. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">I am still teaching now, and still having relapses, some of them severe.
Even though my teaching load is much reduced compared to what I used to do, it
is still a strain, and still drains me more than most other things. It has only
just dawned on me that I am in the wrong profession for dealing well with this
condition. I have begun to look into other avenues of making ends meet, like
translation and editing, and have even got a little work in this area. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">In fact I find that I can do five hours work on an editing or
translation project a day, when an equal amount of teaching would flatten me. I
am alone, not dealing with people, have my environment under control and so it
takes much less out of me. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<br />
<div class="MsoNormal">
<span style="font-size: large;">This book by Susan Cain has changed the way I look at myself, my life,
my condition and my past. At forty-four, I am still learning vital things about
myself. I suppose it is never too late. </span><o:p></o:p></div>
TheChronicSituationhttp://www.blogger.com/profile/06521128598189880435noreply@blogger.com5tag:blogger.com,1999:blog-1130035238983389702.post-4129430160492209492015-03-01T14:12:00.000-08:002015-03-01T14:12:44.895-08:00BREATHING 2.<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">I've written a lot about the topic of <a href="http://thedamnchronicsituation.blogspot.ie/2014/02/breathing.html">breathing</a> in the last year or so.
It began for me when I was tested in the Breakspear Clinic in <st1:country-region w:st="on"><st1:place w:st="on">England</st1:place></st1:country-region>, and
shown to have a lack of carbon dioxide (CO2) in my system, and a lack of oxygen
(O2) getting to my tissues.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">I have done some more investigation myself about this. It seems that you
need oxygen for energy production, and for all the basic processes in the body,
especially the central nervous system. And yet the way that O2 gets to the
various parts of the body requires a certain level of CO2 also, the chemical
process involves an </span></span></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="font-size: large;"><a href="http://2.bp.blogspot.com/-d8QSmZCHSwY/VPOOmEwbSwI/AAAAAAAAAIo/9VqRhX_x5is/s1600/breathe.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="http://2.bp.blogspot.com/-d8QSmZCHSwY/VPOOmEwbSwI/AAAAAAAAAIo/9VqRhX_x5is/s1600/breathe.jpg" height="320" width="244" /></a></span></div>
<span style="font-size: large;">exchange between the CO2 and the O2 before the oxygen can
be picked up by blood cells and transported. Without sufficient CO2 your
tissues can't get enough O2.<o:p></o:p></span><br />
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">This is how I understand it, how it has been explained to me, though it is
no doubt a little simplified, and may not be 100% scientifically accurate in
all the terminology. But the central point remains, we need carbon dioxide to
function properly, and to get proper levels of oxygen to the parts of the body
that need it.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">I have also written about a <a href="http://thedamnchronicsituation.blogspot.ie/2013/12/progress.html">rebreathing mask</a> that Breakspear gave me, a
mask that I wear for about five hours at night in bed. The mask traps the CO2
that I breathe out, and so increasing the levels that I breathe in, thus upping
the levels of CO2 in my system. I have had a few hiccups with it, but in
general the mask has made a definite difference in my life. I have a little
more energy and stamina, have been able to lead a slightly fuller life than
pre-mask days.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">A while after starting the mask, I began doing some breathing exercises.
They were recommended to me by someone who called himself a "breathing
expert". I was initially skeptical, - as anyone self-describing as an
"expert" of any kind I think should be taken with a pinch of salt.
Yet I gave it a go. He gave me an apparatus to breath into, and connect to my
laptop, and software that would measure my CO2 levels as I breathed.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">The exercise was very simple, it was all about slowing and deepening my
breathing. What you do is slow your breathing so you are breathing six times a
minute, in other words ten seconds per full in-and-out breath. In for four
seconds, Out for six. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">The idea is to build up a rhythm, and to keep it going. It wasn't easy
at first, but it got easier. I started at five minutes a day, and built up to
twenty, and could gradually see on the screen my CO2 levels rising. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">This was early last year. I was doing ok, with mask and breathing
exercises, increasing activity, living a life. Then in March I had a <a href="http://thedamnchronicsituation.blogspot.ie/2014/03/crash.html">car crash</a>,
and in May had a relapse of sorts after a stomach bug. So for a period of four
or five months I really struggled.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">And somehow I gave up the breathing exercises. I had a month or so of
feeling really unwell during the summer, and if felt like a lot of work for
something I wasn't even sure was having any positive effect. Eventually I
pulled out of the relapse, but found, in the autumn, that I was still
struggling, that my energy was mediocre, and I was having intermittent chest
problems, wheezing and coughing. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">It took me until December to figure out that I needed to start the
breathing exercises again. I had given the apparatus back to my "breathing
expert", so I had no way of measuring what my CO2 levels were, but this
didn't matter. It was just about timing. I went to the stopwatch on my phone
and timed my breaths. In four seconds, Out for six. The lungs are supposed to
be emptied fully on the out-breath, and then the In should be smooth and
un-forced. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">I immediately felt better. Even on just a couple of minutes a day, to
start off with. Eventually I built it up to fifteen minutes of breathing
exercises a day, and slowly began to regain the activity level I had reached
before my accident last March. My chest problems cleared up pretty much within
two weeks, and my energy became much more solid and resilient. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">It is another lesson to me, if one were needed, of the vital role that
simple chemicals play, at least for me, in the central nervous system. In
slowing and deepening your breathing you increase the amount of carbon dioxide
you inhale and retain in your system. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">The exercises also train you not to "over-breathe", which is
the key term in techniques like the Buteyko method. Buteyko is a therapy for
asthma, but it is also put forward for CFS, though I did a course on it about ten
years ago and didn't feel any benefit. Over-breathing means breathing too fast
and too shallowly, which in turn increases anxiety and makes you over-breathe
even more. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">And so the trials that people with ME/CFS often go through because of
their illness can throw the autonomic nervous system off even more than it
already is, worsen breathing and so set up a vicious cycle, reducing CO2 and O2
and reducing energy, increasing anxiety, worsening breathing...etc.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">Certainly for me the autonomic nervous system (ANS) seems to be key, I
have mentioned that before. And breathing is a key area of the ANS, and effects
how the body works in many ways. CO2 and O2 levels are vital for me in trying
to stay at least semi-healthy and semi-active. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">In fact they are so vital I am considering getting an oxygen
concentrator. This is a machine that increases the concentration of oxygen in
the air, allows you to breath it in through a cannula in your nose, thus
increasing your O2 levels. I want to spend a month or so with the breathing,
and the mask working together, see how far I can get and then reassess. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">It is so rare to find any kind of answer in the battle against ME/CFS.
And at least for me, the oxygen and carbon dioxide question is a key one in my
attempts to inch back to normality. I know <a href="http://www.prohealth.com/library/showarticle.cfm?libid=8812">Dr Paul Cheney</a>, an ME/CFS doctor in
the States, prescribes a rebreather mask and O2 at the same time to his
patients, and this seems to have a good effect. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">The breathing exercises would be something I would try, if I were in a
situation where I was frustrated and had come to an impasse with my health. It
would take a month or two to notice a difference, I would say, but it may be
worth a try, all you need is an accurate stopwatch, something that is on most
phones now. It is free, and can be done at any time. It can be surprisingly
difficult initially to hold a breath for four seconds in, and six out, but it
does get easier quite quickly. If four in and six out feels too hard at first,
it would be possible to begin with three seconds in and five out, and build up.
<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<br />
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">I can't believe that if it has helped me, that there aren't others out
there that it could help too.</span> <o:p></o:p></span></div>
TheChronicSituationhttp://www.blogger.com/profile/06521128598189880435noreply@blogger.com3tag:blogger.com,1999:blog-1130035238983389702.post-79348775843378584472014-11-28T13:10:00.000-08:002014-11-28T13:10:04.387-08:00PERSONALITY FACTORS IN ME/CFS<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">I have often wondered what role a person's personality plays in the
development and management of ME/CFS. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">I heard an "expert" on Irish radio speaking, about eight or
nine years ago, about Fibromyalgia (FM), a condition that is related in many
ways to ME/CFS. He mentioned that it primarily effects the personality type
IMP, which stands for Intense, Meticulous Perfectionist.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">This, of course, is a gross generalization, and seeks to reduce the
explanation of a complex problem to a simple key. But it did get me thinking. I
am not that intense, I am fairly meticulous, but not obsessively so, and have
some perfectionist tendencies, but am a long way from an IMP. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">That said, I can see the rationale behind linking certain aspects of
personality to conditions like ME/CFS and FM. In my own case, there are two
definite elements that have contributed to the ups and downs of my condition. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">The first one is Fear of Missing Out (FOMO). If I look back I can see
that this stems from way back, from my childhood at least. I always hated it
when my friends - as a group - got to go to see a film I really wanted to see
but had to miss for whatever reason, or if my family went on a trip while I was
sick at home.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">I had a lot of bronchitis as a kid, and was sick quite often, so I think
that this contributes to my horror of being on the sidelines. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">In 1978 the Pope came to <st1:country-region w:st="on"><st1:place w:st="on">Ireland</st1:place></st1:country-region>,
and there was great excitement throughout the whole country, which at that time
was quite obsessively religious. My mother and aunts had planned to go and see
him at an open air mass he was giving for hundreds of thousands of people, and
I, at seven years old, insisted on being taken along.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">I knew little or nothing about the Pope, but I saw all of the preparations,
and the excitement, and absolutely refused to be left behind. Of course it was
a miserable experience for me, we ended up having to walk for miles because
there were so many cars parked there, it was raining and I was exhausted and bored
to tears when we finally got there. My mother had told me what it would be
like, but I was insistent on going, just in case I would miss something.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">I would spend days or weeks stewing over some fun event that I missed
for whatever reason. The reasons for my hatred of feeling left out are probably
complex and would need therapy to dig out, but it is something that has always
been with me. It is anxiety that the world is having a great time without me,
coupled with an intense regret that I didn't take a different course. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">Of course this is lethal with ME/CFS. On many occasions I have pushed
myself too far at the wrong time, just because I couldn't bear to miss
anything. This is usually after a cold or infection, when I should be resting,
yet once I start to feel a little better I can't wait to get back to normal
life, and often end up crashing. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">It is a pattern that has repeated itself over and over again, despite my
knowing what will happen if I don't take care. It happened just last week, in
fact. I got this cold, streaming nose and heavy chest, and took a few days off.
I soon started to feel up to more activity, and although I thought I was taking
it easy, I always forget how much rest I need after an illness. By last
Wednesday, after I had gone back to work on Monday and Tuesday, I got out of
bed that morning and was dizzy and nauseous, and spent the next two days in
bed, utterly drained. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">I am still recovering now, two and a half weeks after the initial cold.
The irony is that in pushing myself to get back to activity, afraid that my
life was passing me by, afraid that I was going to miss things, I ended up
missing much much more than if I had just taken my medicine and gotten over it
earlier. Plus I would have missed less work and lost less money. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">Linked to this, I believe, is an Exaggerated Sense of Responsibility
(ESR). It could be connected to being the first born in my family, a lot of my
friends are also the eldest in their family and share this sense of
responsibility and duty. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">I am involved in a local voluntary cultural organization, and also
organize a series of night classes, both of which I have built up largely on my
own in recent years. So when I get sick, it is very difficult to let other
people teach my classes, or run events that I have planned. I hate cancelling
classes with my private students, and having to let people down. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">Somewhere, of course, this is tied to self-esteem and self-worth. I
don't want people to think less of me if I have to cancel things, and I am not
good at delegating decisions or work to others. I don't want to be the guy that
lets people down, misses things, is unreliable. And of course that is exactly
what ME/CFS makes me, someone who may have to let people down, may have to miss
things, may have to be unreliable. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">So these twin factors, FOMO and ESR, are central to my personality, they
lead me to push myself when I shouldn't, and make it difficult for me to just
rest when I need to rest. I don't want to be this vulnerable, fragile creature,
always taking time out, always crying off, constantly telling people that <i>I can't</i>. I want to be the guy that <i>can</i>. And I am not, and that conflict is
difficult to get around, and has caused untold problems for me in trying to
deal with this condition. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">I have to stress that I am not suggesting that ME/CFS is caused by my
personality, or by anyone else's. It is clearly a physiological illness, with
underlying physical causes, not a personality disorder. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">What I am saying is that ME/CFS - perhaps more than most conditions -
has to be managed very carefully. Management is vital to being able to live
with this thing, and how you adapt your life to your illness is central in
managing to survive. And what your personality is like is key to this, to
accepting the compromises that you have to make, to dealing with difficult
times in your life, to being sensible when you need to. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">And my personality, and the drive to succeed, and to appear to be
strong, in control, responsible and competent, has often not been a help to
staying well, in fact it has caused some major collapses along the way that
could have been avoided. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<br />
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">I have gotten better over the years, I have had to. But just last week
has shown me that I have a long way to go to get over my fear of missing out,
my exaggerated sense of responsibility, my troublesome, restless, unquiet personality.</span><o:p></o:p></span></div>
TheChronicSituationhttp://www.blogger.com/profile/06521128598189880435noreply@blogger.com0tag:blogger.com,1999:blog-1130035238983389702.post-77476823778162765142014-11-06T03:46:00.000-08:002014-11-06T07:07:14.425-08:00INFLAMMATION<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">A curious element of my particular experience with ME/CFS is all of the
different kinds of inflammation and aching that I feel in my body from time to time. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">I talk about "inflammation" in the broadest sense, this is not
a medical diagnosis of what I go through, simply a way of describing feelings
of discomfort in different parts of my body. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">There is inflammation in the gut and stomach, of course. Many people
with ME/CFS have irritable bowel syndrome (IBS), and while I don't think that
is quite true in my case, I do have a lot of food intolerances that cause
bloating, discomfort, tenderness in the stomach. If I eat a lot of a food that
I can't usually take, like wheat or cow's milk products, it can feel like my
gut is swollen and inflamed. Even small amounts of certain supplements or
medications (D-ribose for example) can do this too.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">I have also had prostate inflammation for years now, it started a couple
of years into my ME experience, so it has now become an everyday part of my
existence. I have discovered, through various ME forums, that this is quite
common in men with ME/CFS. It can manifest itself as a dull ache in the
prostate, and a strong desire to urinate, often frequently. It is, at times,
literally a pain in the balls. At its worst it can be uncomfortable, even to
sit down, and can wake me up at night, though this is rare.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;"><br /></span></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://4.bp.blogspot.com/-ZUFCQneDjTg/VFtevNrZ7qI/AAAAAAAAAII/s3g6gYE4CSs/s1600/backache.jpg" imageanchor="1" style="font-size: x-large; margin-left: 1em; margin-right: 1em; text-align: center;"><img border="0" src="http://4.bp.blogspot.com/-ZUFCQneDjTg/VFtevNrZ7qI/AAAAAAAAAII/s3g6gYE4CSs/s1600/backache.jpg" height="200" width="126" /></a></div>
<div class="MsoNormal">
<span lang="EN-IE"></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">Six months ago I had what could have been a very serious </span></span></div>
<div class="separator" style="clear: both; text-align: center;">
</div>
<span style="font-size: large;"><a href="http://thedamnchronicsituation.blogspot.ie/2014/03/crash.html">car </a></span><span style="font-size: large;"><a href="http://thedamnchronicsituation.blogspot.ie/2014/03/crash.html">accident</a>. I
was told by multiple people that I was lucky to be alive, the car skidded and
turned on its side in a ditch while I was going 100 kilometres per hour. I
emerged with only some aches in the back and tingling in the feet. I have had
some physiotherapy</span><br />
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;"></span></span></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="font-size: large;"><a href="http://4.bp.blogspot.com/-ZUFCQneDjTg/VFtevNrZ7qI/AAAAAAAAAII/s3g6gYE4CSs/s1600/backache.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><br /></a></span></div>
<span style="font-size: large;">recently, and this has improved, but it is still an issue,
intermittently. The feeling is often that my lower back is stiff and sore and
aching. It sometimes also feels like my neck and upper back too are jammed and
locked up.</span><br />
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">And the last main area is the chest. After a cold - something I had last
month - I often get a cough or wheezy chest for a few weeks after, and I have
been experiencing this recently. There are times when I have had difficulty
breathing at night, or when I haven't </span></span></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="font-size: large;"><a href="http://4.bp.blogspot.com/-1Jt9NTtLtIQ/VFtfQSZ2i7I/AAAAAAAAAIc/PECNokhAJAw/s1600/wheezing-2.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="http://4.bp.blogspot.com/-1Jt9NTtLtIQ/VFtfQSZ2i7I/AAAAAAAAAIc/PECNokhAJAw/s1600/wheezing-2.jpg" height="200" width="151" /></a></span></div>
<span style="font-size: large;">been able to speak because of the
coughing. I am not sick anymore, but the heavy, irritated chest has stuck
around. I also react to animal dander, especially cats, which just chokes me
up. <o:p></o:p></span><br />
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">There are a number of things related to all of these symptoms that I
have discovered over the years that are quite curious. Firstly, the various
forms of inflammation seem at times to be random, and are all intermittent. One
day I may have an aching back, the next my prostate may be sore, this may last
a few days, and then I may get a temporarily inflamed stomach. There isn't an
easy way to predict what I will be experiencing from day to day. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">Secondly, I rarely have more than one symptom at once. So for example,
if my back is aching then my prostate is generally calm. If my chest is tight
then it is unusual to have a disturbed, disrupted digestion. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">This has had interesting implications. I have found that my chest and
sinus are effected by something in my bedroom, it has been like this since I
moved into this house, two years ago. I solved it initially by getting an air
purifier, and so have been relatively fine recently. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">Then, a couple of weeks ago the cartridge in the purifier ran out, and I
haven't been able to get a new one as the company I usually buy them from is
out of stock. So my chest has been heavier than normal, I've been wheezing,
having trouble breathing at night. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">What I have also found in this time, is that I am much less reactive to
problematic foods than normal. I have eaten pasta, apple tart, cow's cheese,
cream, bread, pastries, all with minimal reaction. I haven't eaten great
quantities of these, but the fact that I have been able to eat them at all is
remarkable. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">Somehow it seems that my body can only react one way at a time to the
environment. If my chest is reacting to whatever irritant is in my room, then
my stomach is much less likely to have a bad reaction to problem foods. The
same happened a few months back when my back was giving me trouble. I was
aching and stiff for weeks, then I had a period of prostatitis which was
particularly uncomfortable, and my back stopped hurting so much, pretty much
immediately. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">The final curious element in all this is that, during relapses, the
various kinds of inflammation that I normally experience often disappear. In
May of this year I had a relapse after a stomach bug, and again, my back, which
had been giving me a lot of trouble for the previous two months, eased off
pretty much immediately. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">The same was true of the prostate, which was fairly calm, almost normal.
I had few digestive problems also, and didn't tend to react too badly to
problem foods. In fact, I knew I was getting better when I started to have more
aching in the back, an achier prostate, and when the stomach started to react
to things again. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">I don't pretend to understand this, but the times when I have most
energy, when I am most clearheaded and "normal", are when I have a
stinging prostate, or an aching back, or an inflamed gut. It is perhaps that
the inflammation, the stinging or irritation is a sign that the central nervous
system has woken up, is kicked into action, is no longer dormant. The various
forms of inflammation that I experience are possibly by-products of a
dysfunctional nervous system overreacting while trying to return to a more
normal state. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">Though this is all speculation. As I said, I don't really get it. I
would love to know a little more about human biology and physiology, to know
how these various reactions come about, and what causes them. What is true
though, is that I now welcome a certain amount of aching somewhere. It means
that I am probably going to have some energy, that I am not going to be as
lethargic or sleepy or drained as I am at my worst, that the occasional
headaches or nausea that I get will be kept at bay. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<span lang="EN-IE"><span style="font-size: large;">This is what happens in a condition as messed up
as ME/CFS. You can learn to welcome things that healthy people would see as annoyances.
I live with my various inflammations, and, as long as they are only slight
inconveniences, they are a bizarre sign of some rare, much needed energy that
is not always available. I would love one day to feel good without feeling bad
somewhere else, but for now the trade-off is the only thing available, and that
is what I have to accept.</span></span>TheChronicSituationhttp://www.blogger.com/profile/06521128598189880435noreply@blogger.com2tag:blogger.com,1999:blog-1130035238983389702.post-38921929018107832642014-07-22T09:27:00.001-07:002014-07-22T15:02:35.754-07:00MINDFULNESS<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">To me, the philosophy behind Mindfulness, is one of the only ones I have
ever heard that makes real sense to me. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">Mindfulness, as more and more people are discovering, is a way of
looking at the world that focuses on the present moment. The idea is that the
present is the only thing that really exists.</span></span></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="font-size: large;"><a href="http://2.bp.blogspot.com/-w9KNHxftuvA/U86Pxd_EXHI/AAAAAAAAAHQ/-w7WxP-4nWM/s1600/meditation.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="http://2.bp.blogspot.com/-w9KNHxftuvA/U86Pxd_EXHI/AAAAAAAAAHQ/-w7WxP-4nWM/s1600/meditation.jpg" /></a></span></div>
<span style="font-size: large;"> <o:p></o:p></span><br />
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">Both past and future take up a lot of our thoughts and attention, but
the truth is that we only have the "now". The past is gone, it has
happened, it is fixed and unchanging. No matter how much we wish it was
different, no matter how hard we try to will it to change - and believe me, I
have had periods where all I could think of was how I wished I could do things
over again - this can never happen. We are left with no choice but to accept
the past. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">The future, of course, is something that takes up much of our lives. We
plan, we worry, we anticipate, we frequently get anxious about things that
never come about. It hasn't happened yet, and - despite what some psychics will
tell you - no-one can tell what will occur. The future is always uncertain, for
good and ill, and this too must be accepted.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">So in a real sense, neither the past nor the future actually exists,
though we all spend so much time in both. I know this has been a large issue
for me throughout my life, the twin toxic emotions of regret and worry.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">Regret is simply wishing that the past were different. And with ME/CFS,
which has to be managed very carefully, it is all too easy to look back on
things we could have done differently at particular times that would have save
us a lot of misery and illness and loss. "If I had only known
then....", "If I had only rested at that time,.....", "I
wish I could do it all again." <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">I am very familiar with these thought patterns, extremely toxic and
harmful as they are. They are torture when they get on a loop in your mind. Regret
nearly always results in self-blame, with depression not too far behind.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">Worry about the future too is something I have a lot of experience with.
It is the other side of the coin from regret. I have improved in the last few
years, mainly because I began to notice that ninety-five percent of things that
I spent hours or days worrying about never happened. It began to be clear how
wasteful worry is, especially if you only have a limited amount of emotional
energy.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">So mindfulness, with its emphasis on living in the present moment, is
something that makes absolutely perfect sense to me. Yet, it is about
retraining bad habits that have built up over a lifetime, and so needs a
certain degree of commitment and persistence. The main way of practicing
mindfulness is through various forms of meditation.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">The meditation is built around breathing. You simply focus your
attention on your in-breath, and then your out-breath, becoming aware of what
happens in your body when you breathe in and then breathe out. And you keep
doing this. Thoughts will come and go in your mind, but the idea is to just
accept them and let them go again. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">I use an app called Stop, Breathe and Think, which is pretty good for guiding
you through a meditation. I have been trying to keep up regular meditation for
years now, but have only recently taken it up again in the last few months. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">I have said that the theory makes perfect sense to me, and has improved
my general outlook on, and approach to life, but actually being mindful in
everyday life is a struggle. Moving beyond these bad, life-long habits is not
easy, and at times is beyond my abilities. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">So I have recently started going to a meditation group, or
"Sangha" in the local area. They meet once a week, and I find that
being in a group, with the kind of support and joint practice that this
entails, is a help.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">Yet there are elements of the Sangha that I struggle with too. The group
is based on the teachings of Buddhist monk Thich Nhat Hahn, and although you
don't have to be of any particular religious belief to take part, there are
vestiges of religiosity that I am uncomfortable with. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">For example, there are "sharing" sessions where people can
talk briefly about anything that they like, but before talking each person is
supposed to put their hands together over their chest as if </span></span></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="font-size: large;"></span></div>
<span style="font-size: large;">praying, and bow
slightly from the neck. Then, the rest of the group make the same gesture. This
has to be done every time before someone speaks, and also when they finish
speaking. <o:p></o:p></span><br />
<div class="MsoNormal">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://2.bp.blogspot.com/-T6Miq8aHwd8/U86QZsMTdxI/AAAAAAAAAHY/_lILQOKPm5I/s1600/meditation2.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><br /></a></div>
<div class="MsoNormal">
<div class="separator" style="clear: both; text-align: center;">
<a href="http://2.bp.blogspot.com/-ajB4oDcdu-k/U87fQDB6h3I/AAAAAAAAAHw/qe8cvM7Us-4/s1600/bow.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-ajB4oDcdu-k/U87fQDB6h3I/AAAAAAAAAHw/qe8cvM7Us-4/s1600/bow.jpg" height="175" width="320" /></a></div>
<span lang="EN-IE"><span style="font-size: large;">I find a lot of this ritual behaviour a little silly and tedious, if I
was being honest. I grew up with Catholicism, and all of the kneeling and
blessing myself of my childhood in the cause of a belief system I no longer
believe in has made it difficult to take any of these rituals or gestures
seriously. There are people in the group that really do sit cross legged on the
floor, with the fingers together and pointing upwards, as in the classic guru
pose, and I generally find it funny that people are so serious and intense
about these kind of things.</span></span><br />
<span lang="EN-IE"><span style="font-size: large;"><br /></span></span>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://1.bp.blogspot.com/-IfpjUY8Qt58/U87fZMPKnII/AAAAAAAAAH4/WpHtmljzzmo/s1600/meditation2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://1.bp.blogspot.com/-IfpjUY8Qt58/U87fZMPKnII/AAAAAAAAAH4/WpHtmljzzmo/s1600/meditation2.jpg" /></a></div>
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">The philosophy too, is something I have mixed opinions on. It is
somewhere between a hippie view of the world that desires "happiness for
all living things" (as the group leader wished for during our last
meeting) and a kind of new-age, alternative health approach, that talks a lot
about "healing" and "forgiveness." <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">Not that there is anything wrong with healing, happiness or forgiveness,
it just that after nearly seventeen years with ME/CFS I have come across a lot
of nonsense in the alternative health field, and am automatically suspicious of
this type of rhetoric. I also am pretty sceptical in general, and do tend to
find a lot of things like this funny.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">Still, these are my issues. In general, there is no scam going on with
meditation, like there is with religions or some alternative health
practitioners. No-one is trying to make money out of you or control you or tell
you how to live your life. The group is simply a collection of people who are
trying to work out how to live a good life, and using meditation to try and
find some balance. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">And in the end, it is the only way for me to live. Mindfulness is really
a requirement for me, I believe, just to be able to get up every day and face
the challenges that life with a chronic condition presents. Damping down
regrets, and repressing worries, attempting to live more in the present moment,
is an essential approach for me. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">It appeals to me on an emotional level, in the sense that I know how
powerful just training your attention on the present can be, and what a relief
it feels to be given a break from regret and worry. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">And it appeals to me on an intellectual level too. It is a very profound
truth that the past and future don't really exist. The effects of the past on
the present are a fact, and no matter how much money you have or how powerful
you are, you can never change that. And the future is yet to occur, it is truly
uncertain. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">The only thing we can be sure of is the present. That is all we have.
Mindfulness, despite the difficulties I have with various aspects of it, is an
essential tool for simple survival. </span><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<br />
<div class="MsoNormal">
<br /></div>
TheChronicSituationhttp://www.blogger.com/profile/06521128598189880435noreply@blogger.com0tag:blogger.com,1999:blog-1130035238983389702.post-86316120835047492982014-06-16T07:22:00.001-07:002014-06-16T07:22:43.484-07:00BALANCE - THE IMPOSSIBLE TASK OF LIVING A LIFE WITH ME<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">For many of us with this condition, one of the great questions we have
to answer is, how do we have some kind of life while dealing with this
debilitating, corrosive disease?<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">In other words, how do we combine organizing our lives around our
disability, while still being able to do some of the things that
"healthy" people do. How do we have family, relationships, work,
pastimes, a social life, - in any reduced version of these words - while living
with something that makes normal life impossible?<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">I have been thinking about this question more in the last while, in light
of my recent relapse. Relapses, for me, are usually products of a combination
of an illness or infection of some kind, with not resting at the critical time.
In other words, they are caused by my everyday life continuing more or less as
normal at a time when I should be taking a time out.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">This recent crash followed a familiar pattern. I didn't slow down when I
should have, after a stomach bug. I tried to keep going, through a period of
illness, when I should have stopped. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">It isn't always easy to know exactly what to do in these situations. It
was a busy time for me, five weeks ago when I crashed, and I didn't feel that
bad with my stomach bug, a few cramps, nothing major. I didn't feel bad enough
to believe that I had to take time off.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">And the truth is, after having lost so much time already, and having
missed so much in my life, the thought of retreating, of shutting things down
again, even if it is only for a few days, is difficult to contemplate. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">This is the central conflict in a life lived with ME, the conflict
between trying to stay well and living a life. It is not easy to strike a
balance. In many ways I have organised my whole existence around accommodating
my condition, I work in bits and pieces so as I have enough time to rest during
the day, I have changed my diet so I eat only healthy, fresh food, I try and
insure that I sleep well and avoid stress, and try and not push myself too
hard, with work or travel. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">And yet I have the same ambitions and drives as anyone else. To me, a
life lived within strict limits can be frustrating, sad, it can give a sense of
loss. I have the same desire to investigate new possibilities as most people, a
desire for newness and progress. I want to move forward, to try and live a
life. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">Of course, this desire, this drive, this ambition, can be lethal for
living with ME/CFS. It is what stops me giving in to the condition when things
get bad. And the point is, it is vital to give in when I am not feeling well. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">To put it simply, if you have ME/CFS and are not prepared to give up
everything you have, or everything you have planned at a given moment, at least
temporarily, then you are in trouble. There is nothing that can be
"unmissable", there can be no event, wedding, funeral, class,
meeting, date, party or day at work that you simply "have to" attend.
Everything has to be contingent on health, energy, on being up to it. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">In my case, infections are the critical time. This is when I really have
to watch myself, to take huge care, even if I am not feeling that bad. One
wrong move at the wrong time can cost me months of my life. I know all this,
have missed a huge amount, and yet still continue to have relapses.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">The thing is, I love life. I really love it, I do find the world
fascinating. I am never bored, and in general simple, everyday things give me
pleasure. And being able to work again after so long on the sidelines, is a
great relief. And that is why having to check out for any length of time fills
me with a strange kind of anxiety, as if I am missing something. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">Yet this love of life can be, as I have said, dangerous. It is the
unwillingness to rest, to step back - after I have missed so much time already
- that can cause serious problems. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">One solution to these relapses, would be to be paranoid about keeping myself
safe, and not over doing it. To avoid any situation where I could pick up an
infection of any kind. To work the bare minimum to survive financially and to
avoid unnecessary travel or any kind of exercise. To develop a frame of mind
where being well was the only priority, and the everything else - a social
life, work, travel, relationships - was secondary. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">But that is not in me. That is a life lived in fear and paranoia. I know
people who don't challenge themselves in any way, don't push themselves to do
anything new, or to take chances, and that is just not me. I have had a lot of
the risk-taking beaten out of me by sixteen years of ME/CFS, but I am still a
person who is driven towards life, newness, ambition, opportunity, progress. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">Put it simply, I like doing things. And "doing" the wrong
thing at the wrong time is what can cause the kind of collapse that I have
recently experienced. It is activity, simply doing things, that makes us human,
and yet this is what is potentially toxic to staying well with this condition. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">The key, of course, is balance. Achieving a balance is the goal of a
life lived with ME, and I know this, a balance between activity and rest,
between drive and caution, between desire and safety. Living, and living well
when I can, and resting when I need to. Being mature about it, accepting my
limitations while trying to make the most of my limited life. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">This is the goal, clearly. This is the goal for all of us, I am sure.
But I keep failing at it. It doesn't happen that regularly, but every year or
two I have a crash that was entirely avoidable if I had just rested at the
right time. And a crash can last from six weeks to six months. They are
corrosive and devastating to my efforts to build a life. And yet they arise
from trying to live something close to a normal life. It is life itself that
poses the great danger to those of us with ME/CFS. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<br />
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">A lot of the time I cope well with this illness, but in the long term I
do not know how to stay well and achieve that all-important balance. I cannot
avoid these crashes, and cannot work out how, apart from sealing myself away, a
la Howard Hughes, to keep myself safe while still living a life. I suppose that
is just something I am going to have to work out, a problem to solve as I go
along. </span><o:p></o:p></span></div>
TheChronicSituationhttp://www.blogger.com/profile/06521128598189880435noreply@blogger.com10tag:blogger.com,1999:blog-1130035238983389702.post-17040505579500464012014-05-22T14:56:00.000-07:002014-05-23T01:12:43.929-07:00HANGING ON BY A THREAD<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">I knew that it was too good to last. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">I have made some progress in my health situation in the last six months,
a five or ten per cent increase in my energy and activity levels. It is not
enormous, but is substantial enough to have made a difference in my everyday
life. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">Some weeks recently I have taught close to a full week, which is
revolutionary for me. It hasn't been easy, but it hasn't been too difficult
either, I am very organised and do organise my life around my work to a certain
extent, and so know how to manage the increased work load. It is the most I
have worked for about twelve years. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">Yet two weeks ago I got a stomach bug. It wasn't much, to be honest, I think
I probably picked it up from my three year old niece, some cramps, a little
diarrhea, nothing too serious. I felt more tired than normal, though was able
to keep going, and didn't take any time off. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">By Sunday evening, though, I realised that I should have slowed down a
bit. I had gone for a walk that morning, and then shopped that afternoon and by
the night time my stomach was worse, I was exhausted and anxious. Monday
morning I got up and taught a two hour class, and went home. By the afternoon I
realised that I could hardly make it down the stairs, cancelled my classes for
the rest of the day and went back to bed. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">Since then, ten days ago, things have been tough. I tried to get back to
some tiny amount of normal activity, and realised that I couldn't do it. I have
been exhausted, shaky, anxious, depressed, dumbfounded that it could all go so
wrong so quickly. I made it out to the local supermarket the other day, and
spent ten shaky minutes gathering some supplies. Nothing is easy, everything is
an effort, my previous activity level is a distant memory.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">This is far from the first time that I have experienced this kind of
crash. I wrote about my last one<a href="http://thedamnchronicsituation.blogspot.ie/2013/09/relapse.html"> here</a>. These relapses always happen after an infection of some kind, and
usually occur at just the wrong moment, when I am busy and relatively well,
health wise. If my energy levels are not too bad for a while, I develop a false
confidence, an erroneous belief that I have become bullet proof, impervious to
a further worsening of my condition. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">So, in these moments of relative health, if I get sick with a cold or
stomach bug, I keep going, or try to get back to activity too soon, and often
crash. These crashes have been the worst times of my life, no question. They
can last anything from a month to six months, and involve all of the worst
elements of ME/CFS, magnified by the depression and anxiety that always
accompany such an event.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">And it has happened again. I will probably be alright, eventually, I
have been through this many times before in my sixteen years, so am trying not
to panic. Yet from the way I am feeling now, it could be a couple of months
before I get back to where I was pre relapse. This is hard to take when I was
doing so well, and beginning to be confident in my new levels of health.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">I have been quite depressed by the whole experience. I feel like a
failure. There is the natural depression that comes with not feeling well, and
with facing weeks or longer of inactivity and struggle. I am also quite
isolated, as I have not been working, and so spend practically all day on my
own. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">More than that, though, is the depression that comes from the
realisation that I can never, ever, ever, ever, ever, ever, ever, ever drop my
guard in the future. Never. Unless someone comes along with a cure, there will
always exist the danger of crashing, the spectre of relapse is constantly just
around the corner, only an innocuous cold or stomach infection away. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">The threat of disaster is a constant, and that is hard to live with. It
makes my whole existence insecure, uncertain, frightened. I have recently got
some work teaching English to foreigners in the local adult education
organisation, my first real actual "job" I have had in ten years. I
haven't been in work for two weeks now, and it is unlikely I will get back
before the course they have given me finishes, at the end of June. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">This was something that was important to me, and is now likely
destroyed.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">It is of course true for anyone, in any walk of life, our lives can be
sabotaged in an instant by bad luck, illness, accident. Yet for someone with
ME/CFS this is especially true. It is a tenuous existence we live, no matter
how ill or well we are at any given period there is always the possibility of
something happening out of the blue that can cause our carefully organised
lives to - at least temporarily - fall apart. This is the reality we live with
every day. We are tightrope walkers, trying to stay balanced, desperately
hoping not to fall. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">And the truth is, if I had remembered this two weeks ago, I would have
taken time off work immediately, rested for a few days, slowly built my
activity levels up until I was fully sure that I was over my bug. Instead I
kept going and crashed. This is not an attempt at recrimination or self-blame,
simply a statement of fact, and possibly a reminder for the future. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">In truth it is completely understandable that I kept going. I was busy,
occupied, involved in my life, not wanting to stop. It is a hard decision to
make to drop out for a few days or a week, after I have lost so much time in
the past. Unfortunately, not doing so has caused me to lose much much more time.
<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">It may be understandable that I didn't stop and rest, but it cannot be
acceptable in the future, if I want to have any kind of life. A couple of wrong
decisions have put in jeopardy my financial security, the little work that I
have and a potential of work in the future, as well as causing me the trauma of
having to recover from this excruciating relapse. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">One busy day at the wrong time has caused the bottom to fall out of my
world.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">This is another of the elements that is a weight on someone like me that
is dealing with this complex, chronic illness. They are <i>my</i> actions that cause these horrendous experiences, the crashes I
suffer are usually down to the combination of an infection and my not resting
enough, not recovering well enough, of pushing myself too far at just the wrong
time. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">This is a hard piece of knowledge to bear. It puts a lot of pressure on
the way I live my life, having to be safe, having to take care, having to avoid
risks and manage myself and my life carefully. And generally I do, I am
careful, I eat well, avoid stress, don't overdo it. And yet, one slip and
disaster can occur. It is a lot to live with.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">This knowledge - of how much danger there is in trying to live a normal
existence with ME - does add a layer of insecurity to everyday life, and a
sense of impermanence and shakiness. I have seen, over and over again, how
easily it can all collapse. It happened just last week, and will likely take
months to repair.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">The truth is, I have begun to believe that it is simply beyond my power
to manage this condition. One way to keep myself safe would be to only work a
small amount, minimise any kind of stress or conflict, to not go out and to
live a very quiet, unadventurous life. To say "no" to everything. And
yet I am incapable of sitting still and denying my life. To me it is a form of
death to turn down opportunities and shut myself off to possibilities in order
to keep myself safe. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">They say that the price of freedom is eternal vigilance. The same is
true of health.<o:p></o:p></span></span></div>
<br />
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">I have managed to scrape together some kind of life from the wreckage of
the last sixteen years of illness, but without constant vigilance, with one
slip, it can be gone in an instant. I am beginning to think that such vigilance
is beyond me. It feels like I am simply not going to be able to keep myself
well for any length of time while trying to live a life.</span><o:p></o:p></span></div>
TheChronicSituationhttp://www.blogger.com/profile/06521128598189880435noreply@blogger.com7tag:blogger.com,1999:blog-1130035238983389702.post-39491288149349002852014-04-18T11:53:00.000-07:002014-04-18T12:05:32.726-07:00SOLITUDE<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">Once I was sure that my recent improvement in health and energy was
real, I made two major changes in my life. The first was that I joined a gym
and began exercising. After my recent <a href="http://thedamnchronicsituation.blogspot.ie/2014/03/crash.html">car crash</a>, I have had to put that on
hold, I still have aches and pains in various places. I miss it a lot, and hope
to get back to it again in the future. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">The second thing was that I signed up for Match.com. Match.com is a
dating site, you put your profile up on the site and say what kind of person
you are looking for, and what kind of person you are. The site then sends you
suggestions of people you might be interested in. You can message them, or wait
for them to message you.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">I have had ME/CFS for over sixteen years now. In that time I have had
two short relationships, neither of which went very far, and most of the time I
haven't been in any kind of state to be able to meet someone and try to build
something. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">Before Christmas, though, I felt ready. I felt like seeing what it was
like again to meet a woman I was interested in, to get back that excitement and
passion and security that a relationship can bring. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">I connected with someone on the site quite quickly, and went on a couple
of dates. She lived an hour and a quarter's drive away though, so it wasn't
very practical, but I was anxious to see where it led, and happy to be back in
this world that most people take for granted. So I drove there and back twice.
I enjoyed her company, we got on well, I think, though I wasn't sure how much
potential there was for starting something between us. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">Anyhow, after a couple of weeks it basically fizzled out. I wasn't too
upset, to be honest, I was happy just to be back in the world of romance and
dating, to be open to a normal human experience that I have been denied for so
long. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">That was a few months ago, and I haven't met anyone else in that time. I
have messaged a few women, who have not replied, and have received a few
messages from women that I in turn am not interested in. One problem is that
most people on the site are a good drive away, there are not that many single
women in my area. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">Another issue, I have begun to realise, is that I don't know if I am
really ready for a relationship, or if I really want one. The thing is that I
have been on my own for so long, I have been managing my health, doing what I
can, when I can, that I am not good at compromise. I have a need, like most
PWMEs, to have control over my life as much as possible and not have to fit
someone else into my world.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">Solitude has been a fact of life for me for so long now, I can't
remember another way of living. At the moment I am teaching quite a lot, for
me, about sixty percent of a full week, and so don't spend a lot of time on my
own. I have two, three or four classes a day, and am mixing with people all the
time. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">Outside of work I have some family that I see from time to time, and one
or two friends, but I have developed a rhythm where I do what I want, when I
want, when I feel able. I go to the cinema on my own, go to the gym on my own,
go shopping on my own, just as I have been doing for years.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">The thing about being with people is that they are tiring. Other people
are exhausting. Just conversing at times is too much for me, and having to fit
in with their demands and desires and habits is a lot to take. And so solitude
is a prerequisite for someone with a condition that drains your energy and robs
you of control over the basic things of your life. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">I am, and have been, on my own so much because I cannot live any other
way. Up until two years ago I lived with my parents, but even then I spent a
lot of time in my bedroom and not a lot with them. I moved into shared
accommodation then, but the other people in the house keep themselves to
themselves a lot and so I rarely see them. Moving out of my folks' house was
the best thing I have done in a decade, and has improved my quality of life
hugely. It has made me a little more solitary, but has given me back more
control and independence. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">So I actually like my life now. I am about seventy or seventy-five percent
recovered, enough to do a lot of things I thought I wouldn't be able to do
again, though still in a limited fashion. I don't mind all of the time I spent
on my own, I am usually busy, never bored, have been doing this so long now
that it is second nature. I may be solitary but I am usually not lonely. Or
else it is the case that I have been lonely for so long that I don't notice it
anymore. Whatever I am, it is not a state that I find unbearable.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">I am going to cancel my membership to Match.com this month. I suppose
that I don't really believe that I will, at forty-two, meet someone I like
enough, and who likes me enough, to make me want to change my life to absorb
them into it. A relationship would be a huge upheaval in my life and would
involve some major changes, and I don't really know if I am ready for that. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<br />
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">I don't rule out the prospect, but right now it doesn't seem very
likely. And, for the moment, I'm fine with that. </span><o:p></o:p></span></div>
TheChronicSituationhttp://www.blogger.com/profile/06521128598189880435noreply@blogger.com6tag:blogger.com,1999:blog-1130035238983389702.post-5188147708130448832014-03-30T01:58:00.000-07:002014-03-30T01:58:55.113-07:00CRASH<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">I have used the word "crash" in the past, both here on my blog
and in real life, to mean an experience that any of us with ME will be familiar with. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">A crash, in ME-World, is a period of time when we have done too much, or
have had an overload of stress, or when we have been hit by allergy or
infection. It is a shutting down of our normally functioning systems, and
results in exhaustion, pain, sleeplessness, anxiety, illness. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">A crash is a period of time when things come to a halt, when normal life
is stopped. Many of us experience ME/CFS, at the outset, as a crash or series
of crashes, where we move from functioning to malfunctioning. It can often be a
quick process for many people, a real 'crash'. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">Last week I had a 'crash' in two senses of the word. I was driving down
a country road, somewhere that was not too narrow or rough, at about the speed
limit, or a little above, when I turned a corner and realised that the road
surface was covered in hail. There hadn't been any hailstones where I had just
come from, but obviously in this section of the road there had been a localised
hail shower.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">It took me by surprise, I braked to slow down, skidded, lost control and
flew into the ditch at one hundred kilometres (sixty miles) an hour. My car
ploughed through a wire fence and turned on its side. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">Inside it, I was dazed and shocked. I remember thinking, "is this
really happening?" Kind of a stupid question, but it was a very surreal
experience, to have lost control and turned on my side in my car, to have ended
up in a field in the Irish countryside.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">I cursed, and groaned, and cursed some more. I didn't realise at the
time how lucky I had been, I was just angry at the bizarre turn of events. I
had been driving for sixteen years, and had never had a real accident. I didn't
know how to react. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">I am very short-sighted and need glasses to see any thing well, and
these flew off in the crash. I scrabbled around for them in the tilted car,
without success, and finally decided to try and get out. I managed to open the
driver's door vertically and get out that way, as if it were a hatch on a
submarine. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">By this time other cars had stopped. People helped me, I was dazed and
didn't really know what was happening. I sat in someone's car, still trying to
understand what had happened. An ambulance was called, and the fire brigade,
and the police. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">The police arrived, I described the accident, I was taken to the
ambulance, and a fireman found my glasses for me, which was an enormous relief,
and in fact was the thing that caused me most discomfort in those minutes after
the accident. The glasses were mud caked, but in fact almost intact, amazingly.
I was just glad I could see again. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">In the ambulance, the paramedic gave me the choice of going to hospital
or not. He said that the procedure was, if the car turned over, to take
occupants to the hospital and to strap them into a spinal board that
immobilises the back and neck. Though he said that the fact that I had gotten
out of the car by myself suggested that I was probably alright, and may not
need to.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">I chose to play it safe, so they strapped me into a board and put a
collar on my neck. I was taken to hospital, and in fact was seen within thirty
or so minutes. They tested my spine, which seemed to be fine, took an x-ray,
and discharged me before midnight. The accident happened at about nine pm. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">In fact, the whole procedure was immensely impressive, looking back on
it. This was all new territory for me, and so I didn't know what was normal.
But the emergency services were incredibly efficient, helpful, professional and
caring. I had a life-threatening car crash at 9.15, thirty minutes from my
house, and was back home about 12.30, with the all clear. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">Here in <st1:country-region w:st="on"><st1:place w:st="on">Ireland</st1:place></st1:country-region>
there is a lot of talk in the media, in the wake of the economic difficulties,
of the poor state of our public services, about things not working properly, but
my experience from last Saturday night could not have been better. I also still
haven't received a bill for anything.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">The next day I was fragile, a bit anxious, and aching around my neck and
back. I quickly realised that I wasn't able for anything, and really haven't
been up to much all week. My activity levels have increased in the last few
months, in the wake of improvements in my condition, but this was all wiped out
this week as everything was a struggle. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">So the accident has caused a second type of crash, though it is a mini
one in ME terms. I had to cancel most of my classes this week, though at the
beginning of the week I tried to teach some of them and quickly realised that I
wasn't able to. Today, Sunday, I feel very slightly better, but still a little shaky
and fragile. My back is still sore, though it is, according to my GP, probably
muscular and will clear up.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">The fact is, I could have died. Multiple people afterwards told me how
lucky I had been. It was pointed out to me that I flew off the road exactly
half way between two telephone poles. The ambulance man - I suppose to make
conversation as we travelled to the hospital - told me that he had seen quite a
few accidents where a car had hit a tree or pole and the driver died instantly.
<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">This has been on my mind this week, naturally. I got out and walked
away, relatively unscathed, when others would not have been so fortunate. It
has shaken me. The car is a write off, so badly damaged that it is not worth
repairing, and yet I have a few aches in my back that will probably fade with
time.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">More than one person has said to me, "someone up there must be
looking out for you," which is a natural thing to say in the situation.
Though I don't see it that way, all I can think of - in a connection to my <a href="http://thedamnchronicsituation.blogspot.ie/2014/03/everything-happens-for-reasonreally.html">previous post</a> actually - is that many others have not been so fortunate, many others
have died in the same circumstances. Where was the "someone" for
them? Why was no-one looking out for them?<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">The truth is that my fate in getting out alive from the crash has no greater significance, is not part of some plan, is not down to
"someone" looking out for me. I am not special. It is simple, dumb luck, a random event
that happened to work out for me. Many have not been so fortunate, not because
"someone" wasn't looking out for them, but simply because they had
rotten luck and crashed in the wrong place.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">Still, it is important to recognise my good fortune, to be grateful for
it, and to learn from the experience, I believe. To recognise the value of
simply being able to walk around and continuing to be mobile and independent,
something that would not have been true if I had been paralysed, as many other
people in my situation have been. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">It is also true that I need to learn to be more vigilant on the road. I
have been driving for sixteen years, and that was my first accident, but it is
true that there are times when I am not as careful as I should be, possibly
with a false sense of security after so many years of accident free driving. I
am not reckless, but I could do with being more patient. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">It is also indicative, seeing how bad I felt this week, that the
autonomic nervous system is key to my CFS/ME. During a trauma like the one that
I experienced, the body goes into flight or fight mode, engages the sympathetic
nervous system, floods the system with adrenaline. This happened on an
extreme, intense scale in the space of a couple of seconds last Saturday,
and so had a lasting effect for seven days now, as my body has attempted to get
over the shock. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">This is purely the ANS trying to regulate itself, and this takes time.
It is a lesson in itself. Luckily, I know my body at this stage, and knew when
to take time off work, and knew to reduce my activity. I have heard of people
developing CFS after car crashes, and this is no surprise, a trauma can
unbalance anyone in a situation like this and, if they don't give themselves
time to get over it, the ANS can become chronically imbalanced, the sympathetic
nervous system permanently engaged. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<br />
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">My anxiety, which was heavy and intense at the beginning of the week,
has slowly dissipated as I have rested and tried to relax. I am unable to say
yet if this near-death experience will change anything in my life or not. I do
know, though, that it is not something I will forget in a hurry.</span><o:p></o:p></span></div>
TheChronicSituationhttp://www.blogger.com/profile/06521128598189880435noreply@blogger.com5tag:blogger.com,1999:blog-1130035238983389702.post-21914808033704094192014-03-03T04:04:00.000-08:002014-03-03T04:04:23.589-08:00EVERYTHING HAPPENS FOR A REASON......REALLY?<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">Illness is something that makes people search for answers. This is
especially true of something chronic like ME/CFS, which is both long-lasting
and largely unexplained. This condition can have a profound effect on how one
looks at life.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">Since I started blogging I have begun reading other blogs, of sufferers
of CFS/ME and of other conditions. And one phrase crops up reasonably
frequently in people's accounts of their illness, "Everything happens for
a reason." <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">It is an attempt to find some meaning in a seemingly meaningless
experience. Being ill seems to have no point to it, it is just empty suffering,
and when your life is passing you by it is perfectly natural to wonder why this
horrible thing is happening to you. As human beings we need to see meaning in
our lives, and so we assume that even though the experience is purely awful, it
must have some significance somehow. And so, "everything happens for a
reason."<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">Those of us brought up in a religious environment are especially prone
to this belief. We are taught from a young age that God is in charge of the
universe, that he is all-powerful and controls everything, He is omniscient and
omnipotent. And He has a Plan. We as puny humans cannot expect to understand the
Plan, but there is one and we just have to accept this. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">Thus, "Everything Happens For a Reason" (EHFAR). There are
variations on this expression, "What is destined for you will not pass you
by", is an equivalent, used by many. It is a way of coping
with setbacks and disasters and difficult times and tragedies, and I am sure
can be of some comfort to people who have lost control of their lives, in
whatever way that happens. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">It is reassuring to believe that, even if things appear senseless, that
there is a controlling force behind everything that is bigger than us, that
knows better than us. I'm sure that it can be a relief to let go and just trust
in the Plan, let destiny have its way.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">Of course it is not just the conventionally religious that believe this,
it is a common enough statement in the general culture. The controlling force
may not be God, but is often "The Universe" or "Fate" or
"Destiny." It doesn't matter what terminology is used, the basic belief
is the same. EHFAR.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">For me, though, EHRAR is nonsense. It doesn't bear up to the most basic
examination or scrutiny. This mystical idea of The Plan simply makes no sense.
To accept it would be to believe that we live in the best of all possible
worlds, and that there is some kind of perfect happy ending that is going to
inevitably appear, as if by magic.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">A brief look at the world and what happens in it gives the lie to EHFAR.
What can the 'reason' be for the multitude of small tragedies and disasters
that happen on a daily basis? What is the 'reason' for the recent typhoon in
the <st1:place w:st="on"><st1:country-region w:st="on">Philippines</st1:country-region></st1:place>,
that killed thousands and thousands of people, including small children? <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">What kind of Plan involves the Holocaust, the Rwandan genocide, the
Tsunami in <st1:country-region w:st="on">Japan</st1:country-region>, Fascism,
Stalin's purges, the never-ending mess of the <st1:place w:st="on">Middle East</st1:place>?
The list of disasters and cataclysms throughout human history is literally
endless. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">And then there are all of the minor, everyday catastrophes that happen
to people every day of the week. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">People die in workplace accidents that should never happen, helicopters
crash out of the blue, killing soldiers on training missions that had escaped
unscathed from six months of combat. Children get degenerative diseases and
fall seriously ill, people catch rare infections and never recover, a three
year old in the west of <st1:place w:st="on"><st1:country-region w:st="on">Ireland</st1:country-region></st1:place>
recently crawled into a lift shaft and fell to his death. What can be the
"reason" for that? <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">Again, what kind of Great Plan involves all of this suffering? And to
bring the question back closer to home, what kind of Great Plan involves
millions of people world wide developing ME? What is the 'reason' for sufferers
of this condition losing years and years of their lives to disability and
illness?<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">Of course, there is no 'reason'. Everything does not happen for a
reason. There is no great explanation, no overarching Plan, no destiny, no
fate, no outside force controlling what happens on Earth. To quote a great
modern philosopher, Homer (Simpson, that is), "It's just a bunch of stuff
that happens."<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">Stuff happens, that's it. There is no useful purpose served by my losing
most of my youth to ME. Those people with severe ME are not part of some great
Plan, locked up as they are in their houses, unable to get out, unable to live
even semi-normal lives. None of this has
any greater significance, besides the normal meaning that any human experience
has. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">So what is the significance of the fact that EHFAR is bogus and empty? <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">Firstly, our lives - and our illnesses - are not part of some wider
narrative. We are not characters in a story, moving inexorably towards some
kind of redemption and healing. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">We may achieve some improvement or cure, but this will be down to
perseverance, luck, probably money, and the hard work and innovation of the
medical community.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">And that leads on to the second point, the kind of magical thinking that
EHFAR involves is not helpful in dealing with, and recovering from, a condition
as complex as ME. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">Psychologically, it is important to be realistic and rational, precisely
because this condition is, on the face of things, completely counter-rational.
It is poorly understood, badly explained, and involves so many and so varied a
list of symptoms that it is easy to lose perspective and sometimes sanity in
the face of so much uncertainty. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">Magical thinking does no-one any favours in the long run. For years, at
my worst, I indulged in many of these habits of thinking. At times I was
incredibly negative, believing that I was cursed, that I was destined always to
be sick, that there was a power greater than me dooming me to constant illness. This often left me paralysed and depressed. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">At other times, when I was doing relatively well, I developed a false
sense of security, believing that it wouldn't be "fair" if I got
worse, in some way believing myself immune to further setbacks. Of course I
pushed myself too hard these times, and had relapses, some very severe. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">The truth is that "fair" doesn't come into it. There is no
great Balance in the sky, we don't get what we deserve, no matter how much we
would like to believe the contrary. Life is hard, bad things happen to good
people for no good reason. We do not get our just deserts. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">The truth is that there is no great Plan moving us inexorably towards
health. It is not "going to be alright in the end." It is down to us
to keep going, keep trying to get better, to keep trying new treatments and
encouraging the medical and scientific professions to move research forward. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">There are no guardian angels, no seventh son of a seventh son will cure
us, there is no silver bullet, no magic cure. Connected to this, of course, is
that those "alternative" therapies that most of us spend hundreds or
thousands of euros, dollars and pounds on in the desperate hope that we will
somehow be one of the few lucky ones that benefit, are nothing more than
placebos. As has been said many times, if they worked on a consistent basis
they wouldn't be "alternative medicine," they would be just
"medicine".<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">This may all seem like a bleak and brutal view of the world. That may be
so, although I don't see it that way. For me it is about facing reality, and
doing everything, absolutely everything in your power to change what you don't
like. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">It is about being realistic about your state of health, and not living
within some kind of delusion that everything will automatically be alright. It
is about not giving up, and somehow accepting your condition because
"Everything happens for a reason."<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">There is no Great Plan, no fate, no destiny. We need to keep our minds
clear, and not be distracted by woolly magical thinking that only leads us down
blind alleys.</span><o:p></o:p></span></div>
<br />
<div class="MsoNormal">
<br /></div>
TheChronicSituationhttp://www.blogger.com/profile/06521128598189880435noreply@blogger.com12tag:blogger.com,1999:blog-1130035238983389702.post-39605418615887484662014-02-01T01:51:00.000-08:002014-02-01T02:10:34.476-08:00BREATHING<div class="MsoNormal">
<span style="font-size: large;">My recent improvement in health and energy levels has come directly from
a rebreathing mask that I got in the Breakspear clinic in <st1:city w:st="on"><st1:place w:st="on">London</st1:place></st1:city>. It has boosted the levels of carbon
dioxide in my system, which were unusually low, and this in turn has had a
positive effect on my wellbeing.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">I have written multiple posts about this. Despite this, I wasn't clear
on the exact mechanism of how increasing CO2 improved health and energy. A few
months ago I met a guy in a setting totally unconnected to ME or health. I was
to get in touch with him about another matter and he gave me his card, which
had the term "Breathing expert" on it. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">Naturally I asked him what this was. He explained that he has asthma,
and has done some research into ways of managing the condition and helping him
breathe better. He has now helped other people, teaching them how to breathe
and explaining about how you breathe effects every function of the body. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">There is a link here to the <a href="http://en.wikipedia.org/wiki/Buteyko_method">Buteyko Method</a>, which was developed
as a coping mechanism for asthma sufferers. It is all centred on carbon dioxide
levels. The problem many people have is that we "over-breathe", in
other words we are breathing too shallowly and too often. This doesn't allow us
to absorb the correct amount of CO2 for proper functioning of the body.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">I went to see this guy, K, a few weeks ago. He hooked up a cannula </span></span></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="font-size: large;"><a href="http://2.bp.blogspot.com/-Jo8R1aLQcE0/UuzDbDLBOOI/AAAAAAAAAG0/A2kedv8KfIg/s1600/IMG_0340.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-Jo8R1aLQcE0/UuzDbDLBOOI/AAAAAAAAAG0/A2kedv8KfIg/s1600/IMG_0340.JPG" height="239" width="320" /></a></span></div>
<span style="font-size: large;">to my
nose, in turn connecting this to a small box-shaped device, which he plugged
into the side of his laptop. Here he was able to measure, using software he
had, my CO2 levels as I breathed. It appeared on the screen as I watched.<o:p></o:p></span><br />
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">The optimum level of CO2 is 35mmHg (I don't know what this stands for),
and I was consistently reaching around 30, though when I came in first I was
down at 25, a function, K said, of me being a bit stressed. This was true, I
had gotten lost looking for his house and was a bit on edge. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">K said that he could let me have one of the CO2 measurement devices, and
a copy of the software, so that I could monitor my breathing over a number of
months. There is also a training function on the software, which aims to
basically teach you how to breathe correctly. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">I tried this training aspect when I got home, and have done it every day
for twenty minutes, as advised. It is quite simple, you watch a little ball on
the screen going up then down then up again at a slow, steady pace, and you
match your breathing to the movement of the little ball. You breathe in when
the ball is going up, out when the ball is falling.</span></span></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="font-size: large;"><a href="http://2.bp.blogspot.com/-A5by-0sakUg/UuzDKkcL7WI/AAAAAAAAAGs/oHe_DFjub-c/s1600/IMG_0334.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="http://2.bp.blogspot.com/-A5by-0sakUg/UuzDKkcL7WI/AAAAAAAAAGs/oHe_DFjub-c/s1600/IMG_0334.JPG" height="239" width="320" /></a></span></div>
<span style="font-size: large;"> <o:p></o:p></span><br />
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">All the time your CO2 is being monitored. The ideal level is to get over
35. During the training part, when I am following the advised rate of
breathing, I find I am somewhere between 29 and 32. Interestingly, you can also
monitor your CO2 at normal breathing rates. Without following the rhythm on the
training programme, I am generally at somewhere between 26 and 28. So it is
obvious that the breathing exercise does increase carbon dioxide.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">It is interesting that the breathing training programme is set so that I
actually breathe six times a minute. This sounds like an incredibly small
number of breaths, but it is apparently the optimum for someone at rest. A lot
of us overbreathe, breathe too often, the key, apparently, is to finish each
breath completely, allow all of the air out of the lungs after each slow
exhale, pause on the bottom before inhaling again. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">It is tough at first, though does get easier. The idea is that the
muscles that we use for breathing, which according to K are "smooth
muscles", have to be trained and worked out like any muscle. The breath
training allows the process to become automatic, done for long enough you
should see your breathing becoming slower and more relaxed, with the attendant
rise in carbon dioxide.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">He also explained the exact function of CO2 in the body. As we breathe
in, the oxygen is absorbed through the lungs and into the bloodstream. As the
haemoglobin travels around the body with its oxygen, it meets cells that need
oxygen for energy. A biochemical process takes place where carbon dioxide in
the cell is exchanged for oxygen in the haemoglobin. The oxygen is then used,
along with other things, to make glucose, which is the basic fuel for energy in
cells. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">Without sufficient carbon dioxide, this process cannot take place, and
so energy is not produced as efficiently. Thus, CO2 is vital in the energy
producing process. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">I found all of this fascinating, as it clarified the bits and pieces of
information that I got from Breakspear, and it put my own experience in some
context. Since I began using the rebreathing mask, my breathing has definitely
changed. I no longer get out of breath as easily, something I never really
thought about before, I just thought it was an inevitable part of my ME. My
breathing is also more relaxed now, and noticeably slower. I'm not sure if the
breath training has had any effect on it yet, but the mask certainly has.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">I have been doing the breathing training for two weeks now. K advised me
to do it for three months, it is a slow process, apparently. The goal is to get
my CO2 level up to consistently around 35, or even higher, and this is supposed
to happen through regular practice. We will see, I will keep at it anyway. It
is not going to be the answer to all my problems, but may be another piece
along the road to improvement. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<br />
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">If nothing else with ME, you do learn quite a lot about human biology!</span><o:p></o:p></span></div>
TheChronicSituationhttp://www.blogger.com/profile/06521128598189880435noreply@blogger.com5tag:blogger.com,1999:blog-1130035238983389702.post-56713315863634952602014-01-09T15:57:00.001-08:002014-01-10T15:34:29.187-08:00BREAKSPEAR 5: CHECKUP, AND THE DANGERS OF SELF OBSESSION<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">I went back to the Breakspear clinic this week, five months after I had
last been there. I last wrote about it <a href="http://thedamnchronicsituation.blogspot.ie/2013/08/breakspear-4-o2-and-co2.html">here</a>.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">It has been a rollercoaster five months, with a severe relapse,
recovery, and then a certain improvement in my overall health situation. All of
the ups and downs of the last few months have been connected to the rebreathing
mask that I got from the clinic, and so I was curious to see what the numbers
said was happening with my system. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">The mask, which I now wear for at least six hours every night in bed, is
designed to increase my levels of carbon dioxide (CO2). Oxygen levels are key
in energy production and the proper functioning of the autonomic nervous
system, but O2 is in turn dependent on a certain amount of CO2 in the system as
a buffer or support. In my initial examination I was shown to have low levels
of CO2, which meant that when I exerted myself, my oxygen levels dropped
instead of rose. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">I flew over on Monday to Luton airport, just outside <st1:city w:st="on"><st1:place w:st="on">London</st1:place></st1:city>. I had a follow up appointment with Dr
Shah, who is a neurophysiologist there in Breakspear. He attached sensors to me
which measured different aspects of my central nervous system functioning,
including O2 and CO2. Then he gave me a "challenge", telling me to
inhale and exhale rapidly, six times in a row. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">The last time this is when my oxygen plummeted, when it should have
risen. My CO2 levels also fell during my first exam. This time, the same thing
happened, though less so. The oxygen fell but less, and the same happened with
the CO2, it fell, but recovered more quickly. So the basic story is that my
autonomic nervous system is still dysfunctional, just less so. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">And in the world of ME/CFS, this is what is counted as a win, progress.
Still dysfunctional, just less so. The doctor gave me some advice when I showed
him how I was wearing the mask. He told me that I needed to pull the straps
that fasten it to my head tighter when wearing it, to maximise the amount of
CO2 that is trapped in the mask, and so increase the amount I
"rebreathe". <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">He also said that he had to confer with his colleague, Dr Munro, about
what other actions needed to be taken to get my O2 levels up. He suggested that
I may need an oxygen concentrator, and also what he called an "endothelial
cell repair programme." I'm not sure what this last thing is, but I have
to talk to Dr Munro herself in a few weeks to find out.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">And that was that. There wasn't really much to the appointment, a
confirmation that I was slightly improving, some advice and a promise of future
treatment. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">One of the more interesting parts of my brief stay in <st1:country-region w:st="on"><st1:place w:st="on">England</st1:place></st1:country-region> was
that I spent that evening in the Breakspear guesthouse. They own a medium sized
house a few miles from the clinic, which they allow visiting patients to stay
in for a reasonable fee. The house has a kitchen and common area. Some of the
people I met there were there for a whole week, others for a month or more. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">Again, like last time that I stayed, I was the only man in the house.
This time there was a French lady, three Italian women and a German girl in her
twenties. They were all being treated for some form of Multiple Chemical
Sensitivity, and one or two for electro sensitivity. Breakspear do a lot with
this, allergies, environmental medicine, treating people with unusual reactions
to things.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">The experience of being with all of these sick people, even for just one
evening, was a mixed one for me. It got kind of oppressive, hearing people's
stories, being around people who are so intensely conscious of their
environment, who are so consumed by their condition. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">One lady there had a sensitivity to wifi, and to mobile phone signals,
as well as to other things. She had a helper that came in to cook her dinner
when I was there as she wasn't able to. However, she did seem able to go around
the house with a little device that detected phone and wifi signals, and to go
up to anyone she suspected of having a device, and ask them to turn it off. I
had a laptop with me, and had connected to a wifi hotspot in my room. She
obviously detected this with her little gadget, and threatened to go into my
room and switch it off herself if I didn't. She was very insistent, almost
threatening.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">Another lady had a sensitivity to traffic fumes. Before going to bed she
asked all of us to close our windows in our rooms, so as to keep out any trace
of fumes from the house. My room was at one extreme of the house, and hers at
the other. All doors to all rooms would be closed at night, the rooms only
connected by a narrow corridor.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">The two reactions to me seemed extreme. It seemed to be symptomatic of
the atmosphere of the place, where people were really invested in their
illnesses, and delighted in talking about them. The first lady who was
sensitive to wifi didn't actually feel any worse when I had my computer
connected, she wouldn't have known there was a signal if she didn't have her
little gadget. What's more, her room was downstairs, and mine was way up at the
end of the corridor upstairs.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">And the request of the second lady seemed to me to be unreasonable. As
it happened I closed my window anyway, but one of the girls there had other
sensitivities and felt better with air circulating, and sometimes liked to have
her window open. Besides, the rooms were obviously considerably separated, and
the doors were going to be closed all night. The amount of traffic fumes that
could reach her there in her room, behind her closed door, was miniscule.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">To me this kind of obsessiveness is easily bred in a situation where you
have this dysfunction assailing you that you don't really understand, and which
you have no control over. The requests for no mobile phones or wifi, and for
people to close their windows, were clearly (possibly exaggerated) attempts to
get some feeling of control over their surroundings for these women. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">I should be more understanding of these motivations, having been through
what I have been through for sixteen years. I once thought that mobile phone
signals and wifi made me feel worse, though I now suspect that this may have
been a mistaken belief bred by the terrible insecurity inherent in an illness
that I couldn't control. I have recently got wifi into my own home here, after
having used mobile internet before that, and feel no change at all in my state
of health. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">I have no doubt that those people I briefly shared living quarters with
in Breakspear were genuinely ill, and did have sensitivities that were not
easily explainable. Most of them reported having been told that they were
"pazzo", Italian for "crazy", at one stage or another,
another thing that many with ME/CFS can relate to. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">One lady, the one who asked us to close our windows, told me that she
basically lives in her car, as she cannot generally stand the environment of
her home, full as it is with chemicals and electrical currents. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">These are all people who are suffering. And this suffering can cause a
certain obsession with your state of health, something I have experienced too.
This obsession itself can become unhealthy, though, and cause you to act in
ways that alienate people and leave you even more isolated. One thing I did
notice was that most of the patients there talked at length about their own
condition, but showed little interest in my own particular situation, and asked
me few questions about my experience.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">I was glad to get out of the Breakspear guesthouse, the atmosphere had
become a little oppressive. It confirmed, if nothing else, my own personal
approach to the condition, - which I am fortunate enough to be well enough to
carry out - which is to only talk about it to people I know well, and who already
know a little of what I have been through. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">The fact is that sick people who are consumed by their illness and can
talk about nothing else, are tiring and alienating to talk to. Illness, if we
are not careful, can make us self-obsessed and tedious. I have been one of
those people in my time, and am thankful that I have, for now at least, reached
a stage where my life is not so overwhelmingly effected that I can't think or
talk about anything else. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">Others are not so fortunate, and it is difficult for them to know how to
approach the whole question of what to say to whom and when. Being that ill is heart-breaking, having your
life ruined by illness is hard to take, especially when no-one can tell you why
it is happening. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">It is difficult to achieve that perfect balance between not talking at
all about your ailments, and becoming obsessive about them. The problem is that, if you're not crazy before becoming ill with conditions like MCS or ME, having to live with them can easily take a toll on your sanity.</span><o:p></o:p></span></div>
TheChronicSituationhttp://www.blogger.com/profile/06521128598189880435noreply@blogger.com16tag:blogger.com,1999:blog-1130035238983389702.post-54191929529648935252013-12-26T01:58:00.000-08:002014-01-08T14:08:09.526-08:00SEVEN DAYS IN IBERIA<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">I flew to <st1:country-region w:st="on"><st1:place w:st="on">Portugal</st1:place></st1:country-region>
on the Monday of last week. I flew in to Faro and stayed in the city for a
couple of days. From there I went to <st1:city w:st="on">Cordoba</st1:city> in <st1:country-region w:st="on">Spain</st1:country-region>, and then back to <st1:city w:st="on"><st1:place w:st="on">Seville</st1:place></st1:city>, where I spent last weekend. I came
back on the 23rd, stayed in <st1:place w:st="on"><st1:city w:st="on">Dublin</st1:city></st1:place>
for a night, and finally made it back to my home on Christmas Eve. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">I was away for eight days in total. This is the longest trip away I have
had since I first encountered CFS, more than sixteen years ago. It was, in many
ways, an eye-opening experience.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">I have written recently about the recent <a href="http://thedamnchronicsituation.blogspot.ie/2013/12/progress.html">progress</a> that I have made in my
health and energy levels, and I was interested to see if it held up over the
space of a week long holiday. And I think I can fairly firmly say that it did. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">My first full day in <st1:country-region w:st="on"><st1:place w:st="on">Portugal</st1:place></st1:country-region>,
I went for a wander around Faro's old town. Faro is a fairly underrated part of
the <st1:place w:st="on"><st1:country-region w:st="on">Algarve</st1:country-region></st1:place>,
and the old town is actually really pretty, with cobbles, narrow lanes and
alleyways and a lot of the ancient walls of the city still preserved. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<a href="http://1.bp.blogspot.com/-eDTI8zLsH4E/Urv690ZYXiI/AAAAAAAAAFA/BUYGfFNY-Ms/s1600/IMG_0071.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em; text-align: center;"><img border="0" src="http://1.bp.blogspot.com/-eDTI8zLsH4E/Urv690ZYXiI/AAAAAAAAAFA/BUYGfFNY-Ms/s320/IMG_0071.JPG" height="239" width="320" /></a><span lang="EN-IE"><span style="font-size: large;">I spent about two hours out and about, walking, stopping, wandering
around museums, stopping, having a brief look at the Cathedral, visiting the Capela dos Ossos (the Chapel of Bones) (right), </span></span><span style="font-size: large;">then walking back to
the hotel. I have done this much on previous trips away, walking slowly,
stopping and starting, guarding my energy carefully.</span></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">I had a nap, and then an incredibly inexpensive <i>Prato do dia</i> that the Portuguese offer in restaurants at lunchtime
(€6 for soup, a main course of duck with rice, a bottle of water and a desert),
and decided to keep going. I took a bus to Estoi, a village about 10 kilometres
outside of Faro, and looked for the Roman ruins that were supposed to be there.
It turned out that they were at the far end of the village from the bus stop,
and so I had to walk close to a<br />kilometre to get there. The ruins were open,
but deserted, so I had the place to myself for about an hour until I could
catch the bus back. They were interesting enough, though a little limited, but
I was happy to be there, wandering around and then sitting in the sun, in
seventeen degrees (63 degrees Fahrenheit) on December 17th, in a t-shirt, surrounded by the vestiges of
Roman Portugal. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">Later that day I came back to Faro, went for a walk to find a
supermarket, came back to rest, and then went for a last walk around the city,
which was dead on a Tuesday night in mid December. I came back to the hotel,
and slept soundly.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">This was probably the most active day I have had for years, and the
pattern continued. I took a bus to <st1:city w:st="on">Seville</st1:city> on
the Wednesday, and then a train to <st1:city w:st="on"><st1:place w:st="on">Cordoba</st1:place></st1:city>.
On the Thursday I did a lot more walking around this city, the centre of which
is fascinating, the highlight being the Mosque/Cathedral near the river. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">I had miscalculated with the location of where I was staying in <st1:city w:st="on"><st1:place w:st="on">Cordoba</st1:place></st1:city>, and found that
it was a good fifteen minute walk to the interesting areas of the city. I did
this walk twice on the Thursday, there and back, as well as wandering around
the inevitable lanes and alleys, getting lost while looking for the art
galleries, then walking back to the Filmoteca cinema near the mosque, as well as walking around the mosque itself, and then doing a little present shopping. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">So I must have walked close to eight kilometres (five miles) in total on
Thursday, an enormous amount for me. I was tired after this, naturally, though
not exhausted, not sick, and not damaged for a day or more. In fact, the main
problem was that my leg muscles were stiff, they are simply not used to doing
the amount of work that I put them through during the first three days of the
holiday. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;"><st1:city w:st="on"><st1:place w:st="on"><span lang="EN-IE">Cordoba</span></st1:place></st1:city><span lang="EN-IE"> itself is charming and exotic, and
the Mosque/Cathedral is truly extraordinary. It is called<i> La Mezquita/Catedral </i>in Spanish for a reason, it is in fact a
functioning Catholic cathedral, though the majority of the enormous building
looks just like an Islamic mosque. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">This is because that is exactly what it was for hundreds of years. North
African Muslims ruled most of Spain for centuries, from the seven hundreds
until into the fifteenth century, until just before Columbus left Seville to
discover the new world. This Moorish </span></span></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="font-size: large;"><a href="http://4.bp.blogspot.com/-MTvD7cu7duE/Urv7tL1o6pI/AAAAAAAAAFQ/bWiH5Sl5e0c/s1600/IMG_0108.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="http://4.bp.blogspot.com/-MTvD7cu7duE/Urv7tL1o6pI/AAAAAAAAAFQ/bWiH5Sl5e0c/s320/IMG_0108.JPG" height="239" width="320" /></a></span></div>
<span style="font-size: large;">influence can be seen in the architecture
right through southern <st1:country-region w:st="on"><st1:place w:st="on">Spain</st1:place></st1:country-region>,
as well as in the people, many of whom are North-African in appearance, and
also exists still in the language, which has a number of words of Arabic
origin. <o:p></o:p></span><br />
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">The Cordoba mosque was built over hundreds of years, slowly expanded by
each successive Muslim ruler in the eight and nine hundreds. <st1:city w:st="on">Cordoba</st1:city>,
at this time, was the largest city in <st1:place w:st="on">Europe</st1:place>,
and the centre of Muslim Spain. The building itself is enormous, with hundreds
of columns and arches, and very few windows and subdued lighting. Walking
around the mosque, and keeping away from the centre, it is difficult to
understand that this is a Christian cathedral, but it is. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">In the fourteen hundreds, the Christian forces began to take back
control of <st1:country-region w:st="on">Spain</st1:country-region> from the
Muslims, and <st1:city w:st="on"><st1:place w:st="on">Cordoba</st1:place></st1:city>
fell to them around then. The city was then under Christian control, though
they left the mosque standing. Then in the fifteen hundreds, they decided to
</span></span></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="font-size: large;"><a href="http://1.bp.blogspot.com/-8v1qJNqIRvM/Urv77-RsiEI/AAAAAAAAAFY/OWBe72Jrkj8/s1600/IMG_0088.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="http://1.bp.blogspot.com/-8v1qJNqIRvM/Urv77-RsiEI/AAAAAAAAAFY/OWBe72Jrkj8/s320/IMG_0088.JPG" height="239" width="320" /></a></span></div>
<span style="font-size: large;">gouge a space out of the centre of the building, and build a Cathedral there,
while leaving the rest of the place intact. <o:p></o:p></span><br />
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">So the Cathedral itself is a fair size, with a <st1:city w:st="on"><st1:place w:st="on"><i>coro</i></st1:place></st1:city>
and a large altar. They also raised the roof of the mosque, which has fairly
low roofs generally, and now the Cathedral part is towering, immensely tall and
impressive, with Sistine Chapel-like paintings there. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">The effect is disorientating and fascinating. You have this combination
of Muslim and Christian, East and West, in the same gigantic, stunning edifice.
It is really jaw-dropping, the most extraordinary building I have ever seen.<o:p></o:p></span></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://2.bp.blogspot.com/-i-dkDR3ph98/Urv8ECjo6vI/AAAAAAAAAFg/r-3-TOU5RSw/s1600/IMG_0105.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-i-dkDR3ph98/Urv8ECjo6vI/AAAAAAAAAFg/r-3-TOU5RSw/s320/IMG_0105.JPG" height="239" width="320" /></a></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;"><br /></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">From <st1:city w:st="on">Cordoba</st1:city> I went to <st1:city w:st="on"><st1:place w:st="on">Seville</st1:place></st1:city>, and this turned out to be the
highlight of the trip. I spoke to my sister yesterday, she has also been to the
city, and she said that, even though she was only there for a day, it was
probably the best city she has been to. And I think I agree with her. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">It is a combination of things. The first thing for me is the
juxtaposition of the massive and the tiny. The Cathedral in <st1:city w:st="on">Seville</st1:city>
(which also used to be a mosque, and which still retains the tower and the
square from the original Muslim building) is apparently the largest in the
world, and is where <st1:city w:st="on"><st1:place w:st="on">Columbus</st1:place></st1:city>
is buried. It is </span></span></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="font-size: large;"><a href="http://4.bp.blogspot.com/-bafsi0xlnC8/Urv83H2IPxI/AAAAAAAAAF8/oQO36O3CP7o/s1600/IMG_0156.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="http://4.bp.blogspot.com/-bafsi0xlnC8/Urv83H2IPxI/AAAAAAAAAF8/oQO36O3CP7o/s320/IMG_0156.JPG" height="239" width="320" /></a></span></div>
<span style="font-size: large;">impressive, though when travelling in <st1:country-region w:st="on"><st1:place w:st="on">Iberia</st1:place></st1:country-region> you see
so many churches and religious artefacts that - not having any religious belief
myself - it all begins to get a little samey. Still <st1:place w:st="on"><st1:city w:st="on">Seville</st1:city></st1:place>'s Cathedral is overwhelming in its
size and grandeur. <o:p></o:p></span><br />
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">Then there is the Plaza de España, a wide open space built in a semi
circle, surrounded on one side by this half moon shaped ornate building, with
towers and arches and columns. There is even a moat around it, with gondolas,
reminiscent of <st1:city w:st="on"><st1:place w:st="on">Venice</st1:place></st1:city>.
Beside this is a large park, filled with exotic plants and birds. I hired a
bicycle in </span></span></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="font-size: large;"><a href="http://3.bp.blogspot.com/-txEg8njVYQk/Urv9Emf0jYI/AAAAAAAAAGE/4d1wqxUV8-k/s1600/IMG_0201.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="http://3.bp.blogspot.com/-txEg8njVYQk/Urv9Emf0jYI/AAAAAAAAAGE/4d1wqxUV8-k/s320/IMG_0201.JPG" height="239" width="320" /></a></span></div>
<span style="font-size: large;">the hostel I was staying in and, for the first time in fifteen
years, got up on a saddle and cycled around the city and the park, slowly but
steadily. It was sheer pleasure, in the Andalusian sun, weaving in and out of
the paths in the Parque de Maria Luisa.<o:p></o:p></span><br />
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">And then there are the labyrinth of little streets, alleys and cobbled
paths in the old part of the city, that inevitably I got lost in more than
once. They were built like this in all of these southern cities as protection
from the intense summer sun, so you have mazes of these tight, small spaces
that are the complete opposite of the gargantuan monuments in other parts of
the city.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">More than anything else, though, for me <st1:city w:st="on"><st1:place w:st="on">Seville</st1:place></st1:city> was a kind of sensual assault. There
was the food, which was patchy, but really good when it was good, rich lamb
stew and roquefort tortilla and fried fish. There was the weather, and the
pleasure of brightness and cloudless skies and sun in December. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">There were the people, dark and Arab-looking as many of them are, and
their natural friendliness and warmth. I was particularly struck by the women
in Andalucía, some of whom were jaw-droppingly beautiful. More than once I was
served by someone on a supermarket checkout who should have been on a catwalk
somewhere in <st1:city w:st="on">Milan</st1:city> or <st1:city w:st="on"><st1:place w:st="on">Paris</st1:place></st1:city>.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">There was the art in the Museo de Bellas Artes, and the beauty of the
architecture of every part of the city. And the Andalusian accent in Spanish,
which takes a lot of getting used to, all dropped consonants and hisses, very
idiosyncratic. And then there is flamenco, which is truly one of the great art
forms invented by human beings.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://4.bp.blogspot.com/-ivIlxhwcj9Y/Urv9YWE3RLI/AAAAAAAAAGU/jO8NmKz-ttQ/s1600/IMG_0177.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="http://4.bp.blogspot.com/-ivIlxhwcj9Y/Urv9YWE3RLI/AAAAAAAAAGU/jO8NmKz-ttQ/s320/IMG_0177.JPG" height="239" width="320" /></a></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">I went to a Flamenco bar on Saturday night, La Carbonería it was called.
There was a performance by a group of artists, the classic Flamenco trio of
guitarist, singer and dancer. These are the three branches of flamenco culture,
<i>el toque</i>, <i>el cante</i>, and <i>el baile</i>.
It<br />was spine-tingling to sit there in <st1:city w:st="on"><st1:place w:st="on">Seville</st1:place></st1:city>,
one of the homes of flamenco, and hear that intense singing, and to witness the
sexy, proud, passionate dance. I cycled back to my hotel that night about half
past one, happy, buzzing, thrilled. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">I left <st1:city w:st="on"><st1:place w:st="on">Seville</st1:place></st1:city>
on Monday morning, and finally arrived home the afternoon of Christmas Eve,
having had to go back to Faro to catch my flight. I was sad to leave, and happy
to be going home. I felt like a new person, going home, as if something
fundamental had changed.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">And I suppose it has. The progress that I talked about in my last post,
and which I was a little unsure of, is certainly holding, and is real.
Comparing my last time in <st1:country-region w:st="on">Spain</st1:country-region>
- in March, when I went to <st1:city w:st="on">Granada</st1:city> and <st1:place w:st="on"><st1:city w:st="on">Malaga</st1:city></st1:place> - with this
holiday, I was certainly able to do more this time, and was less exhausted
doing it. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">This obviously added to the intensity of my experience in the last week,
the feeling of being able to do something approaching "normal"
holiday activities, and to not have to restrict myself too much because of my
condition, - for almost the first time in sixteen years - is profound and
significant. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">Again, it is important to emphasize that I have not recovered, not
fully, but I have made a noticeable step forward, and I am still adapting. But
it is wonderful, I think I can say that now, it feels like being let out from
prison in a way, and gives me a feeling of freedom that I haven't had for
years. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">I haven't talked about it much with anyone really, I have mentioned it
in passing to some of my family, but it still seems too soon, and I retain that
superstitious feeling that if I talk too much about my improvement, it will go
away. This makes no sense, of course, but it is a habit of mind bred from
sixteen years of disappointments and let downs and wrong turnings. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<br />
<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">I am not used to definite improvements in my health, so this is all new
territory for me. Whatever about that, my seven days in <st1:country-region w:st="on"><st1:place w:st="on">Iberia</st1:place></st1:country-region> are not
something I am going to forget easily. </span><o:p></o:p></span></div>
TheChronicSituationhttp://www.blogger.com/profile/06521128598189880435noreply@blogger.com2tag:blogger.com,1999:blog-1130035238983389702.post-83213386687498774702013-12-14T13:40:00.000-08:002013-12-14T13:40:04.636-08:00PROGRESS<div class="MsoNormal">
<span lang="EN-IE"><span style="font-size: large;">So it seems that I have made some progress. This is not something that I
really know how to work with, to be honest, as it is such a rare occurrence, in
my sixteen years of illness, but it does seem to be happening. <o:p></o:p></span></span></div>
<div class="MsoNormal">
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<span lang="EN-IE"><span style="font-size: large;">I have written ad nauseum in this blog about my rebreathing mask, and
the extra carbon dioxide that it provides. Posts can be found <a href="http://thedamnchronicsituation.blogspot.ie/2013/08/breakspear-4-o2-and-co2.html">here</a> and <a href="http://thedamnchronicsituation.blogspot.ie/2013/11/dsyautonomia-autonomic-nervous-system.html">here</a>
on this subject. Briefly, a doctor in Breakspear Clinic in the <st1:place w:st="on"><st1:country-region w:st="on">UK</st1:country-region></st1:place>
measured the state of my autonomic nervous system, and discovered that I have
reduced levels of carbon dioxide (CO2) in my system. <o:p></o:p></span></span></div>
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<span lang="EN-IE"><span style="font-size: large;">CO2 and oxygen are both necessary for certain processes in the body, and
they must exist in a correct balance, or else things go awry. I am simplifying
here, but that's the gist. To correct this imbalance, I wear a mask every night
in bed that traps the CO2 that I breathe out, thus allowing me to
"rebreathe" this carbon dioxide and so boosting its level in my
system. <o:p></o:p></span></span></div>
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<span lang="EN-IE"><span style="font-size: large;">To be honest, when I started, I didn't believe for a second that it was
going to help. This was not because I had any particular medical knowledge that
helped me form that opinion, it was simply because I am used to treatments and
medications and approaches not working. I have tried a good range of treatments
over my sixteen years with ME/CFS, and almost nothing has worked. I have kept
going, but without much belief.<o:p></o:p></span></span></div>
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<span lang="EN-IE"><span style="font-size: large;">And so at first, back in August, I used it for a week, and stopped when
I got a stomach bug, intending to start up again. Then I had a bad crash, which
in retrospect was almost totally down to abruptly stopping using the mask. Once
I started with it again, I picked up, and eventually got back to my usual self.
<o:p></o:p></span></span></div>
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<span lang="EN-IE"><span style="font-size: large;">And just in the last two or three weeks there are even signs that I may
be making some overall progress. I have experienced a surprising increase in
stamina, I don't get as exhausted by doing simple tasks as I used to, I have
been able to work more, feel more resilient. <o:p></o:p></span></span></div>
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<span lang="EN-IE"><span style="font-size: large;">In truth, though, I am uncomfortable talking about this. Partly this is
superstitious, a fear of jinxing something that I have waited so long for. Talk
about it too much and it will go away. I have had false dawns before, and it is
unimaginably painful when it turns out that the improvement you thought you
were making turns out to be an illusion. <o:p></o:p></span></span></div>
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<span lang="EN-IE"><span style="font-size: large;">Also, I am not sure how to react to the slight increase in energy and
functionality that I am experiencing. The issue is that I have built my whole
life around having to manage and save energy, every part of my existence has
been controlled by my condition, practically every decision I have made in the
last decade and a half, major and minor, has been influenced by the knowledge
that I am operating at a reduced level compared to most people. <o:p></o:p></span></span></div>
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<span lang="EN-IE"><span style="font-size: large;">I have the mindset of someone who constantly has to take care. And
though this has not changed overnight, it is less true. So it is an ongoing
process for me to adapt to the increased possibilities that feeling better
allows. Things that I have trained myself to not even think about, like having
a relationship, getting a real job, living on my own, now come into view. <o:p></o:p></span></span></div>
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<span lang="EN-IE"><span style="font-size: large;">So what kind of improvement am I talking about? It is somewhere between
5% and 10%. This may not sound much, but it is more significant than it
appears. One area that is certainly helped is my orthostatic intolerance, which
is the problem many people with ME have of remaining standing, or even upright,
for any length of time. This is still an issue for me, but it is measurably
improved on what it was. <o:p></o:p></span></span></div>
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<span lang="EN-IE"><span style="font-size: large;">I can now be somewhat active for a morning and an afternoon - teaching
or shopping or visiting friends or family - and still be able to consider doing
something in the evening. <o:p></o:p></span></span></div>
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<span lang="EN-IE"><span style="font-size: large;">Just today I was out this morning running errands, had a nap, and then
was going pretty much from 12.30 to 6.30, driving an hour down the country to
meet friends for lunch, driving back, visiting someone in hospital. All without
a rest or break. And now I am writing my blog, and preparing clothes for a trip
that I am planning next week. I may have been able to do all of this before,
but with much more difficulty and grief and exhaustion. <o:p></o:p></span></span></div>
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<span lang="EN-IE"><span style="font-size: large;">In sum I suppose I now feel, at least part of the time, the way most
people feel all of the time. It seems like I am approaching that most mundane -
but most elusive - of goals, "normality". I am not there yet, but I
can at least see the outskirts of <st1:place w:st="on"><st1:placename w:st="on">Normal</st1:placename>
<st1:placetype w:st="on">City</st1:placetype></st1:place>. The whole
experience is so surprising, and different from what I am used to, that I don't
know quite how to react.<o:p></o:p></span></span></div>
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<span lang="EN-IE"><span style="font-size: large;">The other point is that it is so long since I felt healthy and normal -
a decade and a half, in fact - that I am not sure I would even recognise health
and normality if I reached it. I am also in my early forties now, compared to
the person in his mid-twenties who first entered this horrible labyrinth, so I
assume entering early middle age will naturally reduce energy levels anyway. <o:p></o:p></span></span></div>
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<span lang="EN-IE"><span style="font-size: large;">There may be more improvement to come. I was told to use the mask for at
least four hours a day, though six if possible, and I am now up to five hours
nightly. I find if I increase the duration too quickly it makes me more tired,
so it has to be a gradual increase. Still, perhaps when I get up to six hours,
or more, I will feel even more benefit. My head is spinning at the thought. <o:p></o:p></span></span></div>
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<span lang="EN-IE"><span style="font-size: large;">The last four months have been a rollercoaster. From the pits of a
relapse to the hope of a new me, I don't really know yet how to react. I am
going to <st1:country-region w:st="on">Spain</st1:country-region> and <st1:country-region w:st="on"><st1:place w:st="on">Portugal</st1:place></st1:country-region> on
Monday, for a week, on my own, travelling around. If nothing else, that will
illustrate exactly how I am, and what I can now manage. <o:p></o:p></span></span></div>
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<span lang="EN-IE"><span style="font-size: large;">Though old habits of thought die hard. For now, one of my main
priorities is simply to ensure that I don't get any worse. It has happened
before that I have had my worst relapses just at the times when I was feeling
the best. First protect the gains, and don't slip back. Then figure out what it
all means, and what new possibilities are opened up to me, if any.<o:p></o:p></span></span></div>
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<span lang="EN-IE"><span style="font-size: large;">I just hope that I don't wake up one morning and realise that all that
improvement that I thought I had made has just disappeared. After sixteen years
of grief and disappointment and loss, it is hard to really believe in a genuine
upturn, a real positive change. It is going to take time to know what this all
really means.</span><o:p></o:p></span></div>
TheChronicSituationhttp://www.blogger.com/profile/06521128598189880435noreply@blogger.com8