Thursday, July 20, 2017

TWENTY YEARS

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.

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.


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.

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 have to get back to work, I thought, they are going to fire me if I miss more time, what are my students going to do without me? 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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.


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. 

Wednesday, May 10, 2017

SNAKES AND LADDERS


I roll the dice
And move like
An arthritic old man
Space by tortuous space.                                         
I roll one
And then one
And then one.
There are no other numbers.

With time,
I make progress.
But then, there is the serpent,
His tongue out,
Lascivious and filled with venom.
He wants to make top, bottom,
Up, down,
High, low.
He is a machine for defeat.
Inevitably
I step on his head
And down I go.

And so, I roll the dice,
And move like an arthritic old man,
Space by tortuous space.

In this game
There are snakes,
There are no ladders.
















Thursday, November 3, 2016

IT HASN'T GONE AWAY, YOU KNOW

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.


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.

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, “They haven’t gone away, you know”.
https://www.youtube.com/watch?v=AY3ddrc6WjE

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).

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.

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.

In my last blog post 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.

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 –

“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.”

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.

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.

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.

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.

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.”

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.

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.

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. 

Inevitably, the IRA did go back to violence in 1996. 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. 

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.


Saturday, October 8, 2016

IT FIGURES

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.

It was a big project; I talked about it a little in my last blog post. 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.

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
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.

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.

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.

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.

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.

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.

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.

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 1st.

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.

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.

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.

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.

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.


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. 

Thursday, August 11, 2016

BOOK

I have just published a novel. 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.


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.

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.

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.

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.

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.

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.

It turned out that it was doable. There is a chronicle of how it came about on the blog 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.

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.

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.

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.

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 have 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!

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.

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 Yearin Lisbon.

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.

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.


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. 

Wednesday, April 13, 2016

INTOLERANT

One of the weirdest and most frustrating aspects of this whole nasty adventure for me is the area of food intolerance.

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.


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.

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.

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.

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.

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.

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).

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.


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. 

Saturday, December 26, 2015

THIS MUCH I HAVE LEARNED.

I have recently passed my eighteenth sickiversary (copyright nopostergirl.com), the anniversary of the date that I mark as the beginning of this long, arduous adventure with ME/CFS.

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.

A. Doing too little is almost as bad as doing too much

Again, to stress, this is my experience. 

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.

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.

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.

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.

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. 

Getting the balance right is very difficult, but it is important. 




B. Sleep is vital (to feel well, and as a marker)

Naturally, if someone has any medical problem, sleep is important. What I have found though, is that it is important to have a rhythm 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.

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 rebreathing mask that had been increasing my levels of carbon dioxide, and which had been helping me for a while.

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.

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.

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.

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 and quantity is important, where sleep is concerned.

C. The importance of Carbon Dioxide (CO2) and Oxygen (O2)

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 breathing exercises, both of which increase the levels of available CO2 in my system.

I have written a lot about this before. 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.

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.



D. The Autonomic Nervous System (ANS) is key

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 autonomic nervous system, 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.

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.

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.

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 “dysautonomia”. Other people have tackled this by meditation, mindfulness, or even HOT.

This last approach is Home Orthostatic Training, 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.


E. Do not despair.

This is the last one, but not the least. And is one of the hardest things to do.

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.

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.

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.

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.

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.

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.

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.