Living in a twilight world between the well and the ill I feel not entirely comfortable in either sphere.
Words like recovery, improvement and cure don't sit easily with me. There is no such thing as recovery as we can never recover what we were before illness struck. Illness changes us and it is to be welcomed for doing so. We grow and gain insights that we never had before. Improvement suggests that what went before was in need of enhancement in some way. I don't know. It's certainly an improvement to be using my wheelchair less and driving more in one respect. But was my status as a wheelchair user and public transport regular something that needed 'improving'? I suppose I'll settle for the fact that my health is improved, in some respects. Cure? No such thing. Not with what I've got. I prefer to talk in terms of windows, space, phases, cycles. It makes more sense. Ups and downs. Plateaus, peaks and troughs.
So why am I moaning about improvement, progress, whatever you want to call it? I don't feel so connected with my blogging buddies, because I have been too busy being 'better' to blog regularly. I got a first in a recent OU course and am very proud of the fact that I acheived 92 per cent in the exam. I have pretty much launched a small preserving sideline for friends, family and neighbours and am thinking of doing it on a larger scale. And I've been more involved with my son, making sure we have adventurous excursions and fun together. And in doing all this I've let a world that was supportive, engaging and fun slip through my fingers. Facebook, with all those past acquaintances (only a handful of them actual friends) is dull in comparison. Plus I feel very much in crip corner on there.
Put me in a group setting for people with my condition though (at our specialist NHS clinic) and things are very different. I was told I have superceded the point at which people normally join the group. So I'm now too well. And boy do I know it. No one seems pleased that I can do more than them. People actually seem wary, suspicious, unfriendly and irritated each time I pipe up with some pearl of wisdom or other. The therapist seems to love the fact that she has someone there who is living proof of the pacing therapy they teach actually working (even though it was only a part of me 'improving'). I suspect some people in the group have become so attached to their toxic 'friend' (as I sometimes call long-term ill health) that they are not quite willing to contemplate life outside its clutches. How else do you explain the reticence, the sideways glances?
Of course, if anyone had suggested that I was too attached to my illness a couple of years back I'd have flipped. But was I? I stopped calling it my illness for a start. And these days I try and disassociate myself from any niggling symptoms like pain, noise sensitivity etc. with mixed success. I kind of feel I am doing to get better, rather than waiting to do.
All in all, it's been a very reformative year. And I am hugely different. Even tea with old friends yesterday felt different. Everyone sensed it. No one quite knows where to place me. All I know is I'm in a place that suits for now, and I'm happy to build on it. Tentatively.