Recently, I've been feeling rather positive about my health. I'm not used to thinking about my health at all, except in terms of how much can I do today and when something changes. But recently, a little hope has crept in. My health is not improving dramatically, but I am now in a better position to really take care of myself than I have been for as long as I have been ill. As a result, I feel a very great deal healthier. Functional impairment has barely shifted, but my skin is clearer, my muscle-tone is wonderful by my standards and I haven't had so much as a cold in eighteen months. I am more robust than I can ever remember being.
It's an alarming thought that I have been sick for approaching fifteen years, and up until the last six months or so, I have always lived in a very physically and psychologically difficult environment. I have never really had a chance to look after myself properly.
One downright dangerous thought to follow this would be how well might I have been now if things had been different? But therein lies madness, or at least profound silliness – some of the the journey was no fun at all, but I wouldn't have wanted to change the destination. Much.
I hadn't noticed how much the way I experience illness has changed until the random but substantial dip that I'm climbing out of now. For many years, there was tremendous pressure, both internal and external, for me to be as functional as possible. To be able to do things. To be able to study or write or keep house or look after other people. This meant I was in the habit of pushing through things until I collapsed, sometimes literally. I took the existence of this pressure for granted - I thought it was an inevitable part of the reality of living with chronic illness. I took the constant questioning of what my limitations were to be an inevitable consequence of living with another person whilst having chronic illness. And then suddenly, the pressure lifted.
If I am under any pressure at all at the moment, it is to look after myself. Not so that I can get well enough to be able to do more, but simply so that I am okay. Because I keep moving about the country, there are up to five people at any one time, who are highly invested in my being as comfortable, calm and contented as possible and nothing more than that.
Even so, it is difficult to shake off the idea that to be more ill is to be in people's way, holding them up, making work for them and inviting the suspicion that I'm milking it and that my perception is not to be trusted. And this makes me a difficult patient. Pushing myself, expecting to be ignored and apologising for everything makes people worry and fuss. It is a revelation to me that, if I'm hurting a great deal and struggling to stay awake, the best thing I can do for other people is stay still and ask for the things I need.
A part of me thinks that I am being spoilt in my current situation, because I am being looked after, unconditionally. And I know it is a lucky position to be in. But the idea that there is anything wrong here only works if you believe that every individual must fend for themselves, practically and financially. And most people don't. Most people live and work in teams of some sort or other, disabled or not. I have my dips, but so do everybody.
Yes, a bit of a ramble. But so much is changing in my life at the moment, I feel inclined to put some of that down. But of course I am living mid-story and I'm still not terribly awake.