BALANCE - THE IMPOSSIBLE TASK OF LIVING A LIFE WITH ME

For many of us with this condition, one of the great questions we have to answer is, how do we have some kind of life while dealing with this debilitating, corrosive disease?

In other words, how do we combine organizing our lives around our disability, while still being able to do some of the things that "healthy" people do. How do we have family, relationships, work, pastimes, a social life, - in any reduced version of these words - while living with something that makes normal life impossible?

I have been thinking about this question more in the last while, in light of my recent relapse. Relapses, for me, are usually products of a combination of an illness or infection of some kind, with not resting at the critical time. In other words, they are caused by my everyday life continuing more or less as normal at a time when I should be taking a time out.

This recent crash followed a familiar pattern. I didn't slow down when I should have, after a stomach bug. I tried to keep going, through a period of illness, when I should have stopped.

It isn't always easy to know exactly what to do in these situations. It was a busy time for me, five weeks ago when I crashed, and I didn't feel that bad with my stomach bug, a few cramps, nothing major. I didn't feel bad enough to believe that I had to take time off.

And the truth is, after having lost so much time already, and having missed so much in my life, the thought of retreating, of shutting things down again, even if it is only for a few days, is difficult to contemplate.

This is the central conflict in a life lived with ME, the conflict between trying to stay well and living a life. It is not easy to strike a balance. In many ways I have organised my whole existence around accommodating my condition, I work in bits and pieces so as I have enough time to rest during the day, I have changed my diet so I eat only healthy, fresh food, I try and insure that I sleep well and avoid stress, and try and not push myself too hard, with work or travel.

And yet I have the same ambitions and drives as anyone else. To me, a life lived within strict limits can be frustrating, sad, it can give a sense of loss. I have the same desire to investigate new possibilities as most people, a desire for newness and progress. I want to move forward, to try and live a life.

Of course, this desire, this drive, this ambition, can be lethal for living with ME/CFS. It is what stops me giving in to the condition when things get bad. And the point is, it is vital to give in when I am not feeling well.

To put it simply, if you have ME/CFS and are not prepared to give up everything you have, or everything you have planned at a given moment, at least temporarily, then you are in trouble. There is nothing that can be "unmissable", there can be no event, wedding, funeral, class, meeting, date, party or day at work that you simply "have to" attend. Everything has to be contingent on health, energy, on being up to it.  

In my case, infections are the critical time. This is when I really have to watch myself, to take huge care, even if I am not feeling that bad. One wrong move at the wrong time can cost me months of my life. I know all this, have missed a huge amount, and yet still continue to have relapses.

The thing is, I love life. I really love it, I do find the world fascinating. I am never bored, and in general simple, everyday things give me pleasure. And being able to work again after so long on the sidelines, is a great relief. And that is why having to check out for any length of time fills me with a strange kind of anxiety, as if I am missing something.

Yet this love of life can be, as I have said, dangerous. It is the unwillingness to rest, to step back - after I have missed so much time already - that can cause serious problems.

One solution to these relapses, would be to be paranoid about keeping myself safe, and not over doing it. To avoid any situation where I could pick up an infection of any kind. To work the bare minimum to survive financially and to avoid unnecessary travel or any kind of exercise. To develop a frame of mind where being well was the only priority, and the everything else - a social life, work, travel, relationships - was secondary.

But that is not in me. That is a life lived in fear and paranoia. I know people who don't challenge themselves in any way, don't push themselves to do anything new, or to take chances, and that is just not me. I have had a lot of the risk-taking beaten out of me by sixteen years of ME/CFS, but I am still a person who is driven towards life, newness, ambition, opportunity, progress.

Put it simply, I like doing things. And "doing" the wrong thing at the wrong time is what can cause the kind of collapse that I have recently experienced. It is activity, simply doing things, that makes us human, and yet this is what is potentially toxic to staying well with this condition.

The key, of course, is balance. Achieving a balance is the goal of a life lived with ME, and I know this, a balance between activity and rest, between drive and caution, between desire and safety. Living, and living well when I can, and resting when I need to. Being mature about it, accepting my limitations while trying to make the most of my limited life.

This is the goal, clearly. This is the goal for all of us, I am sure. But I keep failing at it. It doesn't happen that regularly, but every year or two I have a crash that was entirely avoidable if I had just rested at the right time. And a crash can last from six weeks to six months. They are corrosive and devastating to my efforts to build a life. And yet they arise from trying to live something close to a normal life. It is life itself that poses the great danger to those of us with ME/CFS.  

A lot of the time I cope well with this illness, but in the long term I do not know how to stay well and achieve that all-important balance. I cannot avoid these crashes, and cannot work out how, apart from sealing myself away, a la Howard Hughes, to keep myself safe while still living a life. I suppose that is just something I am going to have to work out, a problem to solve as I go along. 

HANGING ON BY A THREAD

I knew that it was too good to last.

I have made some progress in my health situation in the last six months, a five or ten per cent increase in my energy and activity levels. It is not enormous, but is substantial enough to have made a difference in my everyday life.

Some weeks recently I have taught close to a full week, which is revolutionary for me. It hasn't been easy, but it hasn't been too difficult either, I am very organised and do organise my life around my work to a certain extent, and so know how to manage the increased work load. It is the most I have worked for about twelve years.

Yet two weeks ago I got a stomach bug. It wasn't much, to be honest, I think I probably picked it up from my three year old niece, some cramps, a little diarrhea, nothing too serious. I felt more tired than normal, though was able to keep going, and didn't take any time off.

By Sunday evening, though, I realised that I should have slowed down a bit. I had gone for a walk that morning, and then shopped that afternoon and by the night time my stomach was worse, I was exhausted and anxious. Monday morning I got up and taught a two hour class, and went home. By the afternoon I realised that I could hardly make it down the stairs, cancelled my classes for the rest of the day and went back to bed.

Since then, ten days ago, things have been tough. I tried to get back to some tiny amount of normal activity, and realised that I couldn't do it. I have been exhausted, shaky, anxious, depressed, dumbfounded that it could all go so wrong so quickly. I made it out to the local supermarket the other day, and spent ten shaky minutes gathering some supplies. Nothing is easy, everything is an effort, my previous activity level is a distant memory.

This is far from the first time that I have experienced this kind of crash. I wrote about my last one here. These relapses always happen after an infection of some kind, and usually occur at just the wrong moment, when I am busy and relatively well, health wise. If my energy levels are not too bad for a while, I develop a false confidence, an erroneous belief that I have become bullet proof, impervious to a further worsening of my condition.

So, in these moments of relative health, if I get sick with a cold or stomach bug, I keep going, or try to get back to activity too soon, and often crash. These crashes have been the worst times of my life, no question. They can last anything from a month to six months, and involve all of the worst elements of ME/CFS, magnified by the depression and anxiety that always accompany such an event.

And it has happened again. I will probably be alright, eventually, I have been through this many times before in my sixteen years, so am trying not to panic. Yet from the way I am feeling now, it could be a couple of months before I get back to where I was pre relapse. This is hard to take when I was doing so well, and beginning to be confident in my new levels of health.

I have been quite depressed by the whole experience. I feel like a failure. There is the natural depression that comes with not feeling well, and with facing weeks or longer of inactivity and struggle. I am also quite isolated, as I have not been working, and so spend practically all day on my own.

More than that, though, is the depression that comes from the realisation that I can never, ever, ever, ever, ever, ever, ever, ever drop my guard in the future. Never. Unless someone comes along with a cure, there will always exist the danger of crashing, the spectre of relapse is constantly just around the corner, only an innocuous cold or stomach infection away.

The threat of disaster is a constant, and that is hard to live with. It makes my whole existence insecure, uncertain, frightened. I have recently got some work teaching English to foreigners in the local adult education organisation, my first real actual "job" I have had in ten years. I haven't been in work for two weeks now, and it is unlikely I will get back before the course they have given me finishes, at the end of June.

This was something that was important to me, and is now likely destroyed.

It is of course true for anyone, in any walk of life, our lives can be sabotaged in an instant by bad luck, illness, accident. Yet for someone with ME/CFS this is especially true. It is a tenuous existence we live, no matter how ill or well we are at any given period there is always the possibility of something happening out of the blue that can cause our carefully organised lives to - at least temporarily - fall apart. This is the reality we live with every day. We are tightrope walkers, trying to stay balanced, desperately hoping not to fall.

And the truth is, if I had remembered this two weeks ago, I would have taken time off work immediately, rested for a few days, slowly built my activity levels up until I was fully sure that I was over my bug. Instead I kept going and crashed. This is not an attempt at recrimination or self-blame, simply a statement of fact, and possibly a reminder for the future.  

In truth it is completely understandable that I kept going. I was busy, occupied, involved in my life, not wanting to stop. It is a hard decision to make to drop out for a few days or a week, after I have lost so much time in the past. Unfortunately, not doing so has caused me to lose much much more time.

It may be understandable that I didn't stop and rest, but it cannot be acceptable in the future, if I want to have any kind of life. A couple of wrong decisions have put in jeopardy my financial security, the little work that I have and a potential of work in the future, as well as causing me the trauma of having to recover from this excruciating relapse.

One busy day at the wrong time has caused the bottom to fall out of my world.

This is another of the elements that is a weight on someone like me that is dealing with this complex, chronic illness. They are my actions that cause these horrendous experiences, the crashes I suffer are usually down to the combination of an infection and my not resting enough, not recovering well enough, of pushing myself too far at just the wrong time.

This is a hard piece of knowledge to bear. It puts a lot of pressure on the way I live my life, having to be safe, having to take care, having to avoid risks and manage myself and my life carefully. And generally I do, I am careful, I eat well, avoid stress, don't overdo it. And yet, one slip and disaster can occur. It is a lot to live with.

This knowledge - of how much danger there is in trying to live a normal existence with ME - does add a layer of insecurity to everyday life, and a sense of impermanence and shakiness. I have seen, over and over again, how easily it can all collapse. It happened just last week, and will likely take months to repair.

The truth is, I have begun to believe that it is simply beyond my power to manage this condition. One way to keep myself safe would be to only work a small amount, minimise any kind of stress or conflict, to not go out and to live a very quiet, unadventurous life. To say "no" to everything. And yet I am incapable of sitting still and denying my life. To me it is a form of death to turn down opportunities and shut myself off to possibilities in order to keep myself safe.

They say that the price of freedom is eternal vigilance. The same is true of health.

I have managed to scrape together some kind of life from the wreckage of the last sixteen years of illness, but without constant vigilance, with one slip, it can be gone in an instant. I am beginning to think that such vigilance is beyond me. It feels like I am simply not going to be able to keep myself well for any length of time while trying to live a life.

A MASK, A SAUNA, AND OTHER CFS PARAPHERNALIA

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. 

RELAPSE 3: SURVIVING

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. 

RELAPSE 2: SHRINKING

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.

RELAPSE

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?