Mostly, I manage not to think about the future. The present is enough to be dealing with so, although I do look forward with a kind of dread, most of the time I am so caught up with dealing with what is happening now that I succeed in pushing thoughts of the future to the margins.
That is, until I start a new medication or course of treatment. At these times I find it hard to stop myself imagining what it would be like to be better. I am aware that this is not a useful activity, but it is difficult to avoid.
I did it last year before I began the Perrin treatment. I tried not to, but the therapist told me that he thought I would make a complete recovery in twelve to eighteen months. I didn't take this claim at face value, but did begin to expect something, some improvement, some more energy.
Naturally, when it didn't happen, I was disillusioned, brought low. I felt stupid for letting myself hope, for believing - even for a short time - the therapist's confidence in a recovery.
And now it is happening again. I am in the process of having tests and then hopefully getting treatment from the Breakspear clinic in the
. I am particularly interested in
trying anti-viral treatments, which some people have had success with in the
past, and which I know Breakspear do offer. UK
Having to rest so regularly, I have too much free time to think, and so my mind wanders. And naturally it wanders from time to time to thoughts of a fuller life, what I would do if I could, the dangerous territory of imagining being better, or close to.
I begin to think about full time work, about saving for a house of my own, about travelling, getting a girlfriend. I start imagining a scenario where I am a more or less fully functioning member of society, with realistic ambitions and not such a compromised existence. I do try to squash these thoughts, but I can't keep them out forever.
And I think what I most dream about is less about a fuller life - which actually seems almost impossible to believe in after fifteen years with this - and more about losing this aforementioned dread of the future.
Because without some kind of significant improvement I really don't like the picture of my future that I see. In my early forties now, I am experiencing the first symptoms of aging, without really having experienced my youth. My late twenties and thirties were devoured by CFS/ME, and although I have regained a limited amount of functioning, and do have at least half a life now, I can never get those years back. I could probably handle my mid-life crisis better if I had actually had a full first half of my life.
And so the idea of getting into my late forties and fifties and still having to deal with this, is terrifying. Still struggling with finances, with no pension, pushing myself so I can work enough to pay rent, all the while getting older and with the normal reduction in health and energy that aging brings. And I don't have any energy to lose. At forty-one I am just about coping, I can't imagine how I could when the years start taking their toll.
The thought is so terrifying that normally I don't actually address it head on, though it still hovers there at the back of my mind. So an improvement would mean a fuller life, it would open up possibilities that are closed to me now. But it would also give me back some kind of positivity about what is to come, and might give me some hope that I still have a life left to live that is worth something, rather than what I am doing now, which is mainly just surviving.
Yet hope can be dangerous too. I have been through this quite a few times now. Starting a new course of treatment, I begin to believe in the possibility of recovery. And when it doesn't happen, as it invariably doesn't, picking myself up again after hope has been smashed, is tough.
Without hope it is impossible to go on. Yet with a chronic illness for which there are no real reliable treatments, you have to manage this hope. Maintain scepticism, never let yourself get carried away imagining a better future, while also trying to avoid getting too overwhelmed by thoughts of never getting better.
It is a delicate balancing act, balancing hope and dread, and not one that is always easy.