Thursday, December 26, 2013


I flew to Portugal 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 Cordoba in Spain, and then back to Seville, where I spent last weekend. I came back on the 23rd, stayed in Dublin for a night, and finally made it back to my home on Christmas Eve.

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.

I have written recently about the recent progress 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.

My first full day in Portugal, I went for a wander around Faro's old town. Faro is a fairly underrated part of the Algarve, 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.

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), then walking back to the hotel. I have done this much on previous trips away, walking slowly, stopping and starting, guarding my energy carefully.

I had a nap, and then an incredibly inexpensive Prato do dia 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
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.

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.

This was probably the most active day I have had for years, and the pattern continued. I took a bus to Seville on the Wednesday, and then a train to Cordoba. 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.

I had miscalculated with the location of where I was staying in Cordoba, 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.

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.

Cordoba itself is charming and exotic, and the Mosque/Cathedral is truly extraordinary. It is called La Mezquita/Catedral 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.

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
influence can be seen in the architecture right through southern Spain, 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.

The Cordoba mosque was built over hundreds of years, slowly expanded by each successive Muslim ruler in the eight and nine hundreds. Cordoba, at this time, was the largest city in Europe, 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.

In the fourteen hundreds, the Christian forces began to take back control of Spain from the Muslims, and Cordoba 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
gouge a space out of the centre of the building, and build a Cathedral there, while leaving the rest of the place intact.

So the Cathedral itself is a fair size, with a coro 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.
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.

From Cordoba I went to Seville, 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.

It is a combination of things. The first thing for me is the juxtaposition of the massive and the tiny. The Cathedral in Seville (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 Columbus is buried. It is
impressive, though when travelling in Iberia you see so many churches and religious artefacts that - not having any religious belief myself - it all begins to get a little samey. Still Seville's Cathedral is overwhelming in its size and grandeur.

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 Venice. Beside this is a large park, filled with exotic plants and birds. I hired a bicycle in
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.

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.

More than anything else, though, for me Seville 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.

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 Milan or Paris.

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.

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, el toque, el cante, and el baile. It
was spine-tingling to sit there in Seville, 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.

I left Seville 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.

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 Spain - in March, when I went to Granada and Malaga - with this holiday, I was certainly able to do more this time, and was less exhausted doing it.

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.

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.

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.

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 Iberia are not something I am going to forget easily. 

Saturday, December 14, 2013


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.

I have written ad nauseum in this blog about my rebreathing mask, and the extra carbon dioxide that it provides. Posts can be found here and here on this subject. Briefly, a doctor in Breakspear Clinic in the UK measured the state of my autonomic nervous system, and discovered that I have reduced levels of carbon dioxide (CO2) in my system.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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 Normal City. The whole experience is so surprising, and different from what I am used to, that I don't know quite how to react.

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.

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.

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 Spain and Portugal 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.

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.

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.

Friday, November 29, 2013


Today is my sickiversary. As the name suggests, it is the anniversary of the day that I count as the beginning of my experience with ME/CFS. It was sixteen years ago today. Sixteen long years.

First of all I need to give credit to Jocelyn over at the excellent blog No Poster Girl, for coining the phrase "sickiversary". I think I read it first on her Facebook page though it may have been mentioned in a blog post. It struck me at the time as something worth stealing, and here I am, stealing it!

Usually, an anniversary is something to celebrate. A sickiversary is not. Many of us with ME may actually have trouble pinpointing the exact date of the beginning of our condition, and I know for me I could have chosen three or four dates. But November 30th seems appropriate because the day before November 30th, sixteen years ago, was the last day that I can say that I was more or less well. That seems as good a point as any to begin with.

So what happened on November 30th, 1997? I got a cold. Nothing more, just a head cold. The important point was, though, that I had had a year of constant infections prior to that, a lot of sore throats, chest infections, colds. The cold that began on November 30th was the culmination of twelve months of illness.

At the time I was living in Lisbon, Portugal, teaching English. I was twenty-six, just starting to think about what I was going to do with the rest of my life. Pretty much all of 1997 was taken up with being sick or recovering from illness, nothing serious but just these constant nagging infections.

Because of all of the sick days I had to take, I started to get pressure from work, and then began to go in to work when I really wasn't up to it. This exacerbated my health situation, and meant it took me weeks to get over a simple throat infection.

Of course I was living in a foreign country, and so was a bit isolated there, and also really didn't know what was going on. I was young and had high expectations from myself and from life, and when neither matched up to these expectations, I didn't know how to handle things.

Still, I did have periods of relative health during 1997. In fact, from the beginning of the school year in September until late November when I came down with my cold, I had been relatively illness free. Yet something happened with this winter cold I caught, the runny nose and cough went away within three days, yet this crushing, debilitating fatigue did not.

I went back to work, though I knew that I wasn't able, and actually managed to struggle through three weeks of teaching until I could go home for Christmas. I remember those weeks really well now, even sixteen years later. I suppose I felt then similar to how I feel now. I took a taxi into work each afternoon as I couldn't make it to the bus stop, crawled through my classes, and came home and collapsed at night.

Those few weeks are quite clear to me now. I remember one night in particular. I had recently bought the Radiohead album OK Computer, and this evening I again took a taxi home, shuffled up the stairs to my flat that I shared with two other teachers, and collapsed on to the bed. I put on the Radiohead album on low volume and simply lay there, unable to do anything else. The feeling of being utterly drained is still with me, I can still feel what it was like to be totally incapable of moving in any way, along with the questions I had regarding what was happening to me. I had no idea what was going on.

There have been, as you can imagine in sixteen years, a lot of twists and turns along the way since then. I've been asking myself recently, how much of that twenty six year old is still left? I'm not sure I can answer that.

What I am now is in large part what ME has made me. I have now been dealing with chronic illness for almost exactly two thirds of my adult years, and so I can barely remember what it is like to be able to face into a full day of activity, or spend a day without napping in the middle, or to go twenty four hours without a wave of exhaustion assaulting me. I was still in formation back then, still in the process of becoming, and this process never reached a completion.

So in a sense I feel a little stunted. Suffering from arrested development. While my friends and contemporaries were getting married, having kids, buying houses, building careers, being adults, I was living with my parents, working a couple of hours a week if I was lucky, stumbling through life from one crisis to another. ME/CFS has taken a huge bite out of the best years of my life, and I can never get them back.

How was it possible that I used to be a person that got up, and then started doing stuff for a whole day, until going to bed again? How does someone do that, work a full day, and then maybe go out, or to a night class, or go home and talk to their family, and not have to constantly rest just to make it through each twenty four hour period? I have been so conditioned by sixteen years of how I have to live, of the compromises I have to make, the things I have to turn down, the life events that I have missed, that picturing what it would be like to be healthy is almost beyond the scope of my imagination.

For a long time I suffered a lot of regret and sadness about how it has all turned out, though in the last few years - despite some crashes along the way - I have managed to move out of my folks' place, and to work a little more, to get back something of what I have lost.

I am relatively philosophical today, this day of my sickiversary. Part of that, I think, is from the experience of blogging about this condition. For one thing it is a form of therapy, a way to communicate some of the experience of living every day with this thing. A forum for letting off steam.

For another, I have had the opportunity to read about other people's experiences - many of them much worse than mine - through other ME blogs that I have begun to follow. This has put my own sixteen years into perspective, and has shown me some of the things that I should appreciate about what I have, rather than bemoaning what I have lost.

It also helps that I have just come through a recent relapse, one that knocked me back badly, and now seem to be at least back to my old self, or even actually making some progress. I have been using a rebreathing mask, which I feel is now having something of a positive effect, though it is subtle. Some days I have short periods when I feel the clouds clear a little, and feel the crushing fatigue lift, though I am a long way from being cured. However, the increased CO2 I am getting from the rebreathing mask does now feel like it is doing something.

I may write about this more in the future, when things have settled down a little and I am more sure about how I am. I also still have these debilitating periods pretty much every day when it's difficult to keep my eyes open, or when it feels like I am carrying a concrete block though life, though they are fewer, and don't last as long. For now I am trying to adapt to the slight increase in my energy and well-being, and not count my chickens.

Despite this recent subtle improvement, it still seems remarkable to me that I used to be well once. Sixteen years ago I had never even heard of CFS, or ME, and couldn't have imagined what my late twenties and thirties would bring me. I had what the Spanish call ilusión, a kind of mixture of ambition and desire and wonder about the world, a faith in the future.

This faith, this ilusión, has taken quite a battering in the last decade and a half. Sixteen years later I am still here, still fighting against this chronic situation, still trying to understand what has happened, and why. Sixteen fucking years. Happy sickiversary to me. 

Friday, November 15, 2013


The question of the fundamental cause of  ME/CFS is an intriguing one. It's one that I find fascinating, mostly because it effects me personally, but also as it is something that medicine largely seems to have no answer for. It's like a puzzle, an intellectual challenge. I am only surprised that more scientists haven't shown more of an interest in working out the enigma.

From what we know, and from our experience, the immune system certainly seems to be implicated, but in my own case my symptoms appear to be more closely tied to dysautonomia. Dysautonomia is simply a malfunction of the autonomic nervous system, and something that most people with ME/CFS have, in one form or another.

The next question, of course, is What is the autonomic nervous system? The autonomic nervous system (ANS) is the system in our bodies that controls anything that is not conscious on our part. This includes heart rate, blood pressure, digestion, saliva production, breathing, sweating and temperature control. It's what happens automatically when we're doing something else. It's supposed to run like clockwork.

Most people with ME will recognise the above list, as they are all areas people suffer with. Personally I have problems - like most PWME - with regulation of blood pressure, I can't stand for long periods and feel drained if I have to, and being upright at all can be tiring.

I don't really sweat, even in my sauna at 50 degrees Celsius, I have had problems regulating temperature, I have low saliva production, some digestion problems, sometimes a tight chest, and a heart that occasionally pounds or beats too fast. This is all related to the autonomic nervous system.

I recently discovered the website of a group called Dysautonomia International, which represents people from a wide range of conditions that all suffer from elements of this problem with the nervous system. It makes reference to POTS (Postural Orthostatic Tachycardia Syndrome), which a lot of people with CFS/ME experience, as  a difficulty staying upright or standing, and a tendency to faint.

There is a certain amount of research being done on this area among scientists, and I know that in Breakspear, the clinic just outside London that I am attending, they put quite a lot of emphasis on treating the autonomic nervous system.

They do what they call an Baseline Autonomic Index. To do this they attach sensors to the chest, stomach and heart, and clips on the fingers to measure the blood gases, and also put a band around the chest. And they measure heart rate and pulse, as well as the levels of oxygen (O2) and carbon dioxide (CO2) in the blood, blood pressure and breaths per minute.

Also part of the test is a challenge to the central nervous system. In my case the doctor asked me to take six very deep breaths, one after another. Even though I was lying down I felt quite light headed quite quickly. This, he said, was due to a lack of CO2, which he could measure from the sensors. To counter this he gave me a rebreathing mask, which I have written about before.

The mask is worn basically to correct the lack of CO2 in the body. This in turn is supposed to help the levels of O2, which are necessary for producing energy in each cell in the body.

Another one of the therapies that I have been looking at recently is called Somatic Experience therapyA friend of mine - also with ME - has had good results from it, she says. It aims to engage the parasympathetic nervous system (PNS) - the so-called "Rest and digest" part of the nervous system - and to turn down the sympathetic nervous system (SNS) which manages the "fight or flight" impulse. The difference can be seen here. The SNS is for emergency situations, though what happens in CFS sometimes, is that people get stuck in the "fight or flight" mode long term, thus causing many of the symptoms common to dysautonomia and also to ME.
It is something I may try in the future. Another thing on my list is H.O.T. This stands for Home Orthostatic Training. It was developed, as far as I know, by Professor Julia Newton, in Newcastle University, who has done a lot of work in this area.
The training is quite simple. The patient stands against a wall, with their feet 15cm from the bottom of the wall, and their head leaning against the wall. This creates a kind of tilt. The idea is to do this for thirty minutes, though the vast majority of people with ME will have to build up to this period of time slowly. I can imagine starting at 30 seconds, and increasing from there.
It is important to say that for people with ME/CFS - and especially for those who are more effected - this may not be possible, and may induce a faint, so should only be done with caution and probably with someone else there. They also advise that you discuss this with your doctor, and also have cushions around you in case you do pass out.
The general idea of HOT is to retrain the body to tolerate being upright, standing, maintaining blood pressure. I have actually been in touch with Professor Newton, I emailed her and she kindly responded within a few days. She says that for those who can tolerate the therapy, they have got good results with improvement in energy and greater tolerance of being upright. There is info on a preliminary study here
Again we can see that it is about retraining or resetting the autonomic nervous system. It is about correcting what has gone out of balance, getting the ANS to behave as it should.
This is the key, I think, resetting the autonomic nervous system. This is what these  therapies do, and what I feel I really need. It makes me think of my laptop, which at times begins to malfunction. Processes like opening a file or playing a video, that are normally almost instantaneous, become slow and sluggish. The connection to the internet drops, or it refuses to sleep when I close the top, or it doesn't recognise my printer when I connect it.

Whenever this happens, my first instinct is, naturally, to reboot it. Turn it off and turn it on again. Invariably, this simple action improves or resolves the problem. More often than not my laptop is working perfectly again after a chance to reset itself and start again, its central nervous system now in synch.

And that's what I wish someone could do for me, I feel that I need to be rebooted. I need to be switched off, and then switched back on again, to be able to reset. I feel profoundly out of synch, out of rhythm, unbalanced. I am sleepy during the day and sometimes can't sleep at night, my energy runs out way way before it should do, I can stand for a few minutes but then feel the blood draining from my head and brain, and lose basic functionality. I am stuck in this malfunctioning rhythm where things just don't quite work as they should, and where everything is slow and sluggish and out of phase.

And all of these approaches, the rebreathing mask, SE therapy and HOT - as well, no doubt, as many others - seek to help this rebooting process. They may or may not work for me, though I intend to try them all, but somewhere here I am convinced is a key to what has gone so wrong with my autonomic nervous system.

There is a running joke from the British Channel 4 sit-com, The IT
Crowd, about the slightly dysfunctional IT department in a London company. Any time anyone rings them up reporting problems with their computer they get the same reply from the techs there - "Have you tried turning it off and turning it back on again?" This is the full extent of their expertise. I just wish I could turn myself off, and then back on again, and see what happens. 

Thursday, November 7, 2013


I often wonder what someone looking in the window of my bedroom would think if they watched for any length of time. And no, that's not some kind of kinky invitation to voyeurs, I'm talking more about the various treatments for my CFS that I have tried, and that may look a little unusual if seen from outside.

When I am at home, I spend most of my time in my room. The house I live in is in a housing estate with different streets backing on to one another and so, even though my room is at the back of the house, it is still facing the backs of other houses. The other houses are all in a row so there are probably four or five houses where their occupants could potentially see through my window and into the room, if the curtains are open.

In truth, even the windows nearest to me are about forty metres away, so for a good view a person would need binoculars or really good eyesight. Still, with the light on, at night, with the curtains open, a good view could be had of the goings on in my room.

I really like the orientation of my room, facing, as it does, to the south. If there is any sun at all it will come directly in through my window, and because the house is well insulated, the room will stay warm most of the day, even in November. I also really need brightness and sunlight, and really hate these short dark days of winter, so I tend to keep the curtains open as late as possible.

Anyway, I'm sure that there isn't anyone looking in, but if they did, they would see some unusual things. Last year I had treatment with the Perrin technique, and that involved a lot of self-massage. I had to put olive oil on my chest, neck and back, and massage the skin upwards towards the collar bone.

The trickiest part of course, was doing the back. On the Perrin website they actually sell implements for massaging the back, but I decided to improvise, and rigged up a large flat duster that had a handle, elastic-banded a smooth plastic bag to it and turned it into a back massager. I could reach right down to the base of my back with it, and sweep upwards towards the neck.

Usually when doing it I closed the curtains, but I had to do it three times a day, and so couldn't always be bothered. I can imagine that from outside it must have looked like some kind of bizarre ritual of self-punishment, flagellation with a red duster, maybe something kinky!

Then, three months ago I bought a Far Infra Red sauna. There were a number available, but I got the cocoon model, which is basically something that looks like a flat, sliver sleeping bag that you attach to an electrical control box. I am in here every second day now, all wrapped up in my alien-looking cocoon, with wires coming out of it, looking - to anyone who happened to have a handy telescope at their back window - for all the world like some kind of Frankenstein contraption, or an extra-terrestrial examination chamber!

And then there is The Mask. I have written about The Mask (the name itself suggesting some kind of horror movie) before, here. I was given it by the Breakspear clinic, and told to wear it for four hours a day, as a way of getting the levels of carbon dioxide in my blood up.


So now I mainly wear it in bed, but occasionally I have worn it during the day. It looks like something that the guys in Breaking Bad wear when cooking crystal meth, or like a gas mask they might have worn in London during the Blitz.

Once or twice I have had to go to the bathroom while wearing it, and couldn't be bothered to take it off, and so have ventured out to the landing and the bathroom, hoping not to bump into one of my housemates, and then have to explain everything. Once I even had to get up at night to go to the toilet, with the mask on and, though I didn't see anyone, I could only imagine the reaction of one of the people I live with if they had bumped into me coming out of my bedroom, looking like Walter White coming from his meth lab.

On many occasions I would have been visible for anyone across the gardens and in one of the upstairs rooms in the houses that back on to ours. It does make me smile to think of someone looking in and seeing me sitting in my armchair, breathing like Darth Vader through this big hunk of plastic, and wondering what the hell I was doing.

In general things have settled down a little, after my severe relapse, and then slow recovery. The mask, though it helped me to pick up in the worst days of my crash, doesn't seem to be helping much now. I am persevering, and hoping for the best.

I have stabilised though, and am a little closer to my old self, though still about ten percent down on my pre-crash levels. I have found that using the mask a lot during the day makes me sleepy, and so I am concentrating on using it more at night in bed. All of the measures that I mentioned above: the Perrin technique last year; the far infra-red sauna; the rebreathing mask; all of the money and effort and time that I have poured into these attempts at recovery, have resulted, so far, in precisely nothing. Zero, zilch, no progress at all. In fact, if anything, I am a little worse than I was twelve or eighteen months ago. It is necessary to keep going, but sometimes it really does feel like bashing your head against a brick wall. 

Thursday, October 24, 2013


In his book The Selfish Gene, Richard Dawkins described living organisms as "survival machines". We are, his point was, basically machines whose function it is to procreate and get our genes into the next generation, thus insuring their survival. We are hosts for our genes, and they make us act in a way that makes sure they go on living.

That's pretty much how I feel, like a 'survival machine'. My goal, at the moment, is to survive, and little else. After a long time striving to get better, my objective now is to insure that I don't get any worse. My life is about getting through the days, and getting out the other side unscathed.

It is now eight weeks since I crashed, and it's been a bit of a rollercoaster. The first few weeks were hell, I stabilised a bit, and then started using my rebreathing mask, and began a recovery of sorts. I improved quite quickly over the space of a week, but now I have stalled, and am not, for the moment, getting any better.

The rebreathing mask, as I wrote about in the last post, was prescribed to me by the Breakspear clinic. I have low levels of carbon dioxide in the blood, and the mask is supposed to raise those levels. This happens because when I breathe out while wearing the mask, the mask traps the CO2, and then I 'rebreathe' this CO2 in again, thus bringing my carbon dioxide up to normal levels.

I was using it for a week before my crash. I stopped using it when I got a stomach bug, intending to start again when better, then crashed, and didn't go back to it for a month. When I did, I immediately felt better.

Yet this improvement has now stopped. I have stalled at about ten or fifteen percent less energy than pre-crash days. I was already pretty limited, now my limitations have been exacerbated.

Everything is just that little bit more of an effort, that little bit more difficult. I'm dragging myself around with extra struggle, as if someone had added a couple of kilos to this phantom backpack that I feel like I am carrying around. Standing and cooking dinner takes more out of me, I have now to sit down in the shower, I haven't been out of my home town since it happened, I have seen two of my friends, on two separate occasions, for half an hour each, in seven weeks, and hardly any of my family. Every day is just that ten or twenty percent more of a battle than it was just two months ago.

I have gone back to work, but at a reduced level. I taught two hours last week, and will do four this week. I anticipate maybe getting up to seven or eight a week, compared to twelve to fourteen hours a week pre-crash. I am still lucky enough to be able to work - I know many PWME do not have that ability - but everything will have to be reduced, for now.

Because of this, financial survival is now another necessary objective. I was never comfortable financially, but did manage to save a little to pay for treatment, but now it will be about being able to make rent and pay the bills every month, and little else. I am going to have to cut back on simple things, like going to the cinema, or buying that extra piece of expensive sheep's cheese.

So basically I work, buy food, rest, sleep, cook, eat.  This will be it for the time being. I spend a lot of time on my own, out of necessity, and do feel quite isolated, though in truth I have no desire at the moment to see anyone. A bit of solitude right now is probably all I can cope with, being with people involves either having to pretend that I am better than I really am, or else explaining why I am not well, and how I am feeling, and neither prospect is appealing.

I am continuing with the rebreathing mask, am sleeping in it for a few hours a night, which is awkward but doable, and am using it for a total of about four hours. Breakspear advised me to try it for at least eight weeks, so I'll keep going and see what happens. I have also started using my FIR sauna again, and am up to 40 degrees, and will continue to increase the temperature. No progress from anything yet, though hope springs eternal.

I continue taking the anti-depressants, which help keep me on an even keel and smooth out the bad times. Without them I would surely be a mess, so I am grateful for the balance that they provide. I find that they allow me to take things as they come a little more, to just accept what has happened and to try to deal with it, without melting down into self-recrimination, despair and regret.

It is a period of adjustment, and will take me a few months to work out exactly what I can and cannot do. Right now I am being cautious, and trying to take care. Right now I am thinking of little else but survival. 

Thursday, October 10, 2013


It is now six weeks since I crashed. I have made a partial recovery, but am still well below where I was pre-crash. Two steps back, one step forward. It has been a difficult time.

I have come more or less to understand what happened around the time of the relapse. To explain it fully I would have to go back a bit, to my last Breakspear appointment.

There, I had an autonomic nervous system test, which showed that I had low levels of carbon dioxide (CO2) in my blood. To rectify this the doctor, Dr Shah, gave me a rebreathing mask. I wrote about this here.

The mask is one that fits over my whole face, and has a tube attached. What happens is that when you breathe out while wearing the mask, the carbon dioxide that is breathed out is trapped in the mask and so when you breathe in again, you breathe in extra CO2. This is supposed to raise the levels of CO2 in your body.

The "blood gases" are carbon dioxide and oxygen, and for proper functioning of the body there has to be an adequate balance between the two. The autonomic nervous system (ANS) relies on this correct balance.

Anyway, I came back from Breakspear and started using the mask. I used it for a week, starting at an hour a day and building up to three or four a day. The instructions from Breakspear were to use it for at least four hours a day, and more if I could.

Then I visited a friend of mine, who has kids, and stayed over in their house. Everyone in the house progressively, over the weekend, came down with a nasty stomach bug. I escaped on Sunday evening, thinking I had gotten away with it, but by Monday morning felt horrible, went to bed for the afternoon. I didn't eat for about 30 hours.

When I was recovering from the stomach bug, which knocked me out, I stopped using the mask. It was unwieldy and uncomfortable, and I hadn't noticed any improvement, so I didn't think stopping would do any harm. I had intended to start up again soon.

A week later, while trying to slowly get back to some kind of activity, I crashed. The relapse bore a lot of the hallmarks of previous crashes, insomnia, anxiety, complete exhaustion, shakiness, weakness.

It was a bad crash. I was incapacitated for a few days, and slowly, over days and weeks, began being able to shower, make food, make it up and down the stairs. My limbs were incredibly weak, my voice, I noticed, was really weak, talking of any kind was an huge effort. I was frightened and sleepless and depressed.

I began taking some anti-depressants, which helped a little, and slowly managed to make it out of the house every day, briefly. Still, I was a million miles from where I had been pre-crash. The weakness, in the limbs and in the voice, hung on, and was quite scary. I had no power at all. I couldn't see how I was ever going to get out of it, to get back to work, what I was going to do.

And then I started using the mask again. I felt immediately a little better. I felt sleepy during the day for the first time in weeks, a pleasant, relaxed sleepiness. I started with an hour a day, broken up into fifteen minute sections, and slowly increased my usage of the mask. The weakness faded a little, and my sleep improved, I stopped waking up during the night for 40 or 50 or 60 minutes.

That was last week. I haven't had any more improvements since then. What I think happened now was that after using the mask for a week initially,  my body somehow got used to the extra carbon dioxide, even though I didn't feel any better during the time. And when I stopped, I got stuck somehow in even more of a deficit of CO2. This deficit, coupled with the aftermath of the stomach bug, weakened me, and when I tried to get back to normal life, I crashed.

Of course there is another element to the relapse, and it is a deadline. Deadlines have always been lethal for me in terms of worsening of my ME. By 'deadlines', I mean having to be well - or telling myself that I have to be well - by a certain date. This leads to pushing myself, doing too much at the wrong time, getting frustrated. A lethal mixture.

The deadline this time was a flight to Spain that I had booked for the following week. It occurred to me, while trying to get over my stomach bug, that I needed to start doing things now, a week before my flight, if I was going to be able to manage to make it to Spain, let alone last four days there. So I forced things, pushed when I shouldn't have, and the rest is history.

It almost doesn't matter how it happened now, though. The key thing is that it has happened, and I have to deal with it. As anyone who read my last post will discover, I haven't been dealing with it very well. I have been very depressed at times, despite all of the anti-depressants I have been taking.

Now, though, I am continuing to use the rebreathing mask, and hoping for a little more improvement, though as yet I've had nothing. The story with the mask is a little more unclear. I used it for a week, felt no benefit, and assume that my body reacted badly to being denied this extra CO2 when I stopped it. I don't do well with abrupt changes of any kind, and I assume that that's what happened. Then, after the crash, I suppose I got stuck in this extra cycle of CO2 lack, and spiralled even further down.

Whatever the truth, I am operating now on about 15/20% less energy than I had pre-crash, and it's not coming back. Things that were doable and not needing enormous effort just two months ago are now tough, like going to the supermarket, or meeting a friend. Everything is an effort, a struggle.

I have an intermittent tight chest, continued weakness in the limbs and in the voice, a shakiness and shortness of breath that wasn't there before, and a worsening of my digestion, with more gurgling and gas. I am shrunken, less than I was.

The implications of this are many. Having less energy means I will have to shrink my working time and increase my time resting. And of course my income has shrunk too, and so I will have to budget even more carefully. My social life has shrunk to almost nothing, and time spent with friends and family will have to be cut back.

What has increased is this dread and fear for the future. The truth is that another relapse like this, and I will be close to house-bound. My greatest fear is not being able to look after myself, and that is really one serious crash away.

I now see the world as a threatening place. Especially now, at the beginning of winter, the world is full of infections, and viruses, of stress and opportunities for over-exertion, a myriad of potential threats. This experience - sparked by a seemingly innocuous stomach infection - has shown me that there is no escape from ME, there is never an end to the danger, you can never, ever drop your guard.

ME is always there, waiting for a chance to pounce, a moment of weakness, waiting for an opportunity to increase disability, to add insult to injury. There are a few things that I intend to try, to attempt to make some progress, get back some of what has been lost. However, my life, my shrunken life, for the moment, is about survival, and little else.

Tuesday, September 24, 2013


The worst experiences of my life have been relapses of my CFS. There is no comparison between anything else I have ever gone through, relapses are like being in hell for me.

There are a number of reasons why this is so. The first is that it is often when I am doing quite well, relatively, that I have these crashes. I am relatively active, have things under control, and probably get complacent, start thinking that I have this whole condition sussed out, more or less. So it is the collapse in the middle of a period of relative health that makes it so painful.

The second, and more impactful reason, is that when I have a crash, I do recover to a certain extent, but often I don't get back to my pre-relapse state of health. I lose something. I have this incredible crash, am incapacitated, rest, recover, slowly, slowly come back to limited activity, and find that I hit the ceiling earlier than months before, pre-crash. My relapses are not just passing periods of ill-health, they actually do lasting damage that doesn't just fade with time.

Thirdly, what makes them so horrendous is that I play a part in causing them. They usually follow some kind of infection or cold or flu. I know that I need weeks to recover from these, but on occasions in the past I have pushed it, tried to get back to activity too soon, and one day found that I simply couldn't move any more, that I am exhausted, drained, sleepless, massively anxious, regretful, short of breath. And I know that if I had just taken a little more time, rested more, I would have got through it and out the other side. The knowledge of my responsibility in the relapse is one of the most poisonous aspects of having to live with it.

I suppose I should examine what exactly I mean by a relapse. As I said, they always follow a cold, a sore throat, an infection of some kind. Any kind of challenge to my immune system leaves me prostrate, exhausted, it effects me profoundly. I have had five or six colds in the last two years, and have taken my time with each one, shut myself away for seven, ten days, rested, slowly increased activity, been very very careful. This is difficult when I am working, as I am in general, but I have done it.

At times in the past though, on occasions I have started trying to get back to activity after say four or five days. I often don't feel great, but I generally don't feel great anyway, so I don't really think much of it and try to keep going. This is where I get into serious trouble, and it usually creeps up on me until the collapse has happened before I have even noticed, and it is too late. And it is irreversible. Once I have had one or two days of even slight over-exertion - and I'm not talking running a marathon here, it can be as little as going to the supermarket, or teaching a class for an hour - I am a goner.

The relapse is marked by anxiety, a sleepless night, twitching muscles, utter exhaustion, difficulty standing, and then often depression. It generally lasts anything from six weeks to three months. Sometimes, I can come out the other end more or less unscathed, other times when I finally emerge, I am less than when I went in.

To me what happens during these relapses are the key to my ME/CFS. They are the reason I am no longer able to work full time, as I was able to do about three years in to my illness. Then I had a succession of relapses that robbed me of a lot of functionality, and left me with little energy for years, until I learned to manage things better and started taking some supplements that helped.

If I could just find out what happens to my central nervous system during these irreversible relapses, I could find a key to what is going wrong in general. What changes, what is damaged. My system seems to get stuck into an even more unbalanced state, and there is no shifting it, no way of going back, no way of healing what has been damaged. I don't understand what happens, and I really need to.

I mention this as I have recently had another relapse. In fact, I think I had two, in quick succession. I don't think I can go into the details at the moment, just thinking about them is almost more than I can bear. I may write about it again.

Suffice it to say that I have gone from a semi-functional person, who had a limited social life, a reduced working life and who operated at about 70% on a good day, to a bit of a wreck. I don't ever remember being so weak, my legs when I walk feel like lead, everything is an effort, I feel about eighty years old.

I may regain some kind of functionality, but it does look like there has been damage done, and actually quite significant damage. I wake up every morning and it takes me a few seconds to realise that it is not all a bad dream. I actually can't really believe that I now have to live like this. I went to a few shops today, something I would have done a month ago without thinking, and thought I was going to pass out.

I am frightened, inconsolable, regretful, bereft, grief-stricken. I am not handling the whole thing very well. I am taking some SSRI anti-depressants, Lexapro, that helped me before during a previous relapse, and these have at least stabilised me, emotionally, and helped me sleep a little, but they cannot hold back the waves of depression and regret that hit me four or five or six times a day. And of course I am having to rest so much that I also have a lot of time to think. Too much time.

Luckily my parents live close, and my mother helped me during the worst of the crisis, when I wasn't even able to make food for myself. But I am now in general very isolated. I do manage to get out of the house now once a day, for a drive or to the local shop, but most of the time I am here in my house, and usually in my room, on my own. I live in this shared house situation, which is difficult, and even more difficult now that a new guy has just moved into the house. I hardly have the energy to introduce myself, and haven't actually met him yet.

As it is the start of the academic year there were three or four night classes I usually organize that were due to start about now, that I have had to ask other people to teach. Students from last year have been wanting classes, and I have had to fob them off, tell them that I hope to be back in a few weeks. But it could be a good while before I can teach again, and even then I will be lucky to be able to do more than an hour a day.

It all amounts to a kind of personal catastrophe for me. With no work I have no way of paying for the ongoing treatment I was hoping to have in Breakspear, and anyway no energy to actually get there. I am shell-shocked by the swiftness and magnitude of my collapse and really have not yet come to terms with it.

A lot of things have been swirling around my head in the last month, sadness, fear, regret, anger at myself, though one question above all others keeps coming back to my mind. - What the fuck do I do now?

Tuesday, August 20, 2013


I've been attending this clinic just outside London for a few months now. I have written about it three times here, here and here. This is the latest update in my testing and treatment programme.

The first time that I attended the clinic, back in July, I had what they call an Autonomic Baseline test, that measures all the different aspects of the functioning of the autonomic nervous system, blood pressure, breathing, heart rate, blood gases etc. I got the results back a week or so later.

There were a number of findings. My supine (lying down) heart rate was normal, as was my level of oxygen (O2). My blood pressure was low but I knew that anyway.

The most significant results involved when the doctor doing the test - Dr Shah - gave me a challenge, i.e. he asked me to breathe deeply in and out six times. I felt quite light headed while I did this, and this was explained by the fact that my oxygen levels actually fell sharply during this period of deep breathing. What is supposed to happen in healthy individuals is that during exertion oxygen levels are supposed to rise. My response was the exact opposite of what would be ideal.

The carbon dioxide (CO2) result was also interesting. My baseline supine level of CO2 is below normal, at 37 mmHg (not sure what this stands for). Normal level is between 39 and 44. However, during exertion, the levels again fell sharply, and took a long long time to come back up again, in fact during the test they didn't even reach the already inadequate level of 37 but limped up to about 33.

I think the link between lack of oxygen and CFS had long been known about, but the CO2 connection is not as well established. I went back to Breakspear last week to have a breathing mask fitted and, as I thought, to get an oxygen concentrator to help with my blood gases.

Instead, I went through the autonomic test again, just to confirm my results, and Dr Shah gave me the breathing mask with no oxygen concentrator. This mask is simply a mask, like in the picture above, that covers most of my face, with a tube attached but which is not connected to anything the other end. He put it on me and then pointed to the dials on the computer measuring my CO2. My carbon dioxide levels had risen to 40, then 41, then 42 since I had been wearing the mask.

The idea is that when I breathe out I, like everyone, expel carbon dioxide, which gets trapped in the mask. In turn when breathing in I take in some of this expelled CO2, so increasing the levels in my blood. It is called a "rebreathing mask" for this reason. According to Dr Shah, the idea is that we work on normalising my CO2 levels, and then possibly move on to working with O2.

I am supposed to wear the mask for at least four hours a day. I have been using it for a few days now, though have found that to get to the four hours I have to wear it in bed. If I wear it during the day I am fairly incapacitated, it covers my eyes and I can't wear the glasses that I need to actually see anything, so all I can do is listen to the radio or sleep. Wearing it in bed is not ideal either, it is bulky and slightly uncomfortable to wear while lying down, but it is my only real option.

I will be re-evaluated in six to eight weeks. I haven't noticed any difference yet, but it is early days. Dr Shah mentioned that in wearing the mask and getting my body used to higher levels of CO2, my body supposedly learns that it needs more carbon dioxide and regulates itself to achieve the levels necessary.

I have no idea if this is a realistic goal or not, or if it is likely to work. I get the impression that they in Breakspear are in the early days of investigating treatments for this, and a lot of the treatments are trial and error. I have no choice but to trust that they know what they are talking about and to give it a go.

On a slightly different note, I spent one night in Hemel Hempstead, where Breakspear is, and I stayed in Breakspear's own guest house, which they run for their patients. It is quite reasonable price-wise, in fact cheaper than the poky, run down guest house that I stayed in the previous time I was in Hemel. The place has a kitchen of its own and a large garden out the back.

While I was there there were five Italian ladies staying at the same time, all of whom were having treatment in Breakspear. They didn't have much English, but there was an interpreter there with them and also, as I speak Spanish, we were able to communicate to a certain extent.

The majority of the women seemed to be there for MCS, Multiple Chemical Sensitivity, which I know some people with ME suffer from too. They were having allergy testing, and were being given vaccines for their sensitivities, using low dose immunotherapy. Some of them, who were getting re-tested, reported having being helped a bit by the vaccines.

Low dose immunotherapy has been recommended for me too, not just for my food sensitivities, but also for my overall health. One thing that came up on the autonomic test was that I have a small level of brain stem activation, or inflammation, which Dr Munro seems to be sure is linked to allergies and sensitivities. I may look into this line of investigation at some stage, but the connection seems to me to be tenuous at best, and kind of hard to take seriously.

What may influence me to investigate the immunotherapy is that I have not been able to tolerate either anti-viral medication that Dr Munro prescribed for me, and so the vaccines may help me to lose my sensitivity to medication. Anyway, first things first. The O2/CO2 conundrum is enough to be going on with for now. I am just about ready to go to bed, with my Darth Vader mask on, and hopefully my CO2 levels coming back slowly to normal.  

Thursday, August 15, 2013


I've been addicted recently to the Netflix TV series Orange is the new Black. It's about a middle-class young woman in the North-east US, Piper Chapman who, because of a past indiscretion involving smuggling drugs, ends up in prison in New York State.

She is from a comfortable background, is engaged to be married, but has to serve a 15 month sentence in a woman's prison. The show is mainly about her struggles to adapt, to fit in to this alien environment, and to come to terms with her lack of freedom and her changed circumstances.

The show is brutal, realistic (I imagine), funny, compelling, and I can't stop watching it. It also got me thinking about something that has occurred to me on more than one occasion before. Having CFS is like being in prison.

In episode 8 of the series, one inmate says to Piper, the main character, "I feel like I'm missing so much." Me too, I felt like saying, me too.

And I think that this is what inmates and PWMEs have most in common, we are both simply trying to survive, while watching the rest of the world moving on.

Like prison, of course, there are different levels of sentence. Some people, like me, are on a day release, they can work in a limited fashion, have some kind of contact with friends, travel to a limited extent, have a limited form of freedom. We have a taste of the world outside without being able to experience it fully.

Others, of course, don't even have that. They are in maximum security, locked down for 23 hours a day, some in a form of solitary confinement, given the exhaustion and difficulty even communicating with friends and family causes. Their days are regimented and strictly limited by their disease, and the outside world begins to seem very far away.

It is about freedom and control. Inmates in prison have lost their freedom, and have little control over their lives. Our jailor is our chronic condition that has deprived us of some of the basic liberties that most people take for granted.

ME is a prison sentence. Our lives are constrained and constricted like prisoners, squeezed until all some of us have left is a form of house arrest, and no known release date. We are tunnelling, most of us, desperately looking for a way out. There is no parole board, no time off for good behaviour. We try to appeal our case, and it goes nowhere.

At least we can watch Netflix. Check out Orange is the new Black if you get a chance. (I should really be getting this blog post sponsored!)