Lord, my body has been a good friend

Well she hasn’t actually, but we are entering a process of reconciliation. We still have some major differences of opinion, mostly around issues of rudimentary neurology. We also disagree about the process of digestion, but not the way we used to, when she decided that the whole thing was impossible without chemical assistance. And immunology remains an area of significant conflict. In theory, I had and recovered from a cold three weeks ago, but she is still spinning it out for all it is worth.

“It’s over,” I say, “We had our cold. We got over our cold. It is most unlikely that we are still infected.”

“Achew!” is her reply.

But there are some ways in which we have both started giving ground.

When you’re really unwell, nothing ever feels any better. In reality, you do have periods of being more tired and less tired, but the tired you feel before you drop into twelve hours sleep at night is little different from the tired you felt during waking hours. This is why you end up going to sleep in an usual place or half way through a conversation; you don’t see it coming because you feel that way all the time. And of course, there’s no relief; however many hours you sleep, you won’t ever feel refreshed.

What a deal we have struck, my body and I! These days, if I go to bed when she tells me in the evening – whatever time that is - then she will give me runs of days where I wake up at the same time and don’t sleep at all during the day. This results in three exciting and unfamiliar experiences:

• A kind of phew feeling when I get into bed at the end of the day. The bed has actually become a comfortable place. I can’t remember the last time I lay down and it felt good as opposed to lying down and feeling slightly less awful.

• A sense that I have remarkably more energy in the morning (once I've come round and that can take a while) than I did last thing at night. You may note by the time at which this was published, there will be inevitable exceptions to this rule.

• Getting out of the bath when the water temperature is still above freezing. What joy!

We’ve also come to an agreement about exercise. For all her faults, she is really being very kind about that just now.

It still hurts a bit to do what I do, but the effect of this doesn’t last long at all. So it strikes me that some of what I am up against is atrophy as opposed to illness pain, which is a different mechanism and quite a different feeling. Even a strong muscle can become overcome by acidosis and it gets to hurt very much indeed before the muscle becomes weak and fails – and it really does fail. Our problem - mine and hers - is that the muscles can reach acidosis crossing the room and they never recover properly. Whereas atrophy is just weakness, which is vaguely uncomfortable; like pushing against an object we’re not nearly strong enough to move.

In chronic illness, these things can become indistinguishable. Only when I’m building myself up, do I try to differentiate. Atrophy can only be improved through activity and the discomfort can’t do me too much harm (not with what I’m doing), whereas increasing my illness pain today will mean being able to do less tomorrow and possibly the next day and the next. I can push myself on one count, but not the other.

Of course the more exercise I get, the bigger and stronger my muscles become, the better my circulation and the better condition my entire body is in for dealing with this shit. So in order to do this and to avoid being held back by atrophy, I have to do the same amount every day, be careful not to do to much but gradually increase this over time.

The only thing that can set me back – and indeed, has persistently set me back at every attempt over the last ten years – is relapse, usually in the form of some immune disaster. I get more sick, the pain dramatically increases and with it every other symptom which makes any kind exercise impossible; bad co-ordination, dizziness, fatigue and so on.

My GP generously compares me to an Olympic Athlete. “You keep getting bronze all the time, but you do keep trying and that’s what is important.”

Bronze. Hmm.

Anyway, in return for these favours, I have been nice to my body. I tell her that she's losing weight when I look in the mirror. I have been more consistant with giving her adequate rests. And I have reduced the painkillers which make me feel better but which I acknowlegde do make some of her jobs more difficult.

Now, having written this nice friendly post all about her, I am hoping that if I ask very nicely she will let me back to sleep, having been sufficiently appeased to reduce the particular cramp that the bitch woke me up with at four o'clock in the morning.