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?