It could be the name of a horror film featuring Zombies, but instead I'm writing about Chronic Fatigue Syndrome. It's just about six years ago I was signed off for four months having attempted a come-back after a month off.
Even now, I am not sure what is wrong with me. Medical professionals and expert websites are contradictory in saying fibromyalgia and CFS are:
- separate conditions with often overlapping symptoms;
- synonymous; or
- different, but always likely to occur together, one triggering or contributing to the other
Often, I can't describe what is wrong with me. I get incredible bursts of energy, do something, and then I feel tired, but, then, surely, doesn't everyone? Or I have pains and aches and think - I have to live with this every day. I then question, but doesn't everybody, at least by the time they get to my age (which isn't old but is certainly more than fresh-faced youth).
Then there are the knock-on effects. In the early years, doctors used to say things like 'best cure is an hour's daily exercise'. It was impossible then to do that, even a walk locally on chores would tire me out. Now, they say things like 'being overweight doesn't help'. As if I didn't know.
It peeves me that doctors only use the scale weight rather than proportion of fat - I was weighed just before I restarted swimming and bought a bike in 2008 summer, and I was weighed again early September last year, and all the doctor could say 'You've put on weight'. I pointed out how much extra exercise I'd done since the last weighing and how I'd gone down a dress size; in fairness, she acknowledged that this is normal, but it seems to me to be a poor way to measure relative health (for an unfit person I have surprisingly strong muscles especially in my back and my calves; I did have good thigh and upper arm muscles six months ago, they've gone a bit flabby since).
All that aside, it is not really that helpful to say 'being overweight makes your condition worse'. As with many other conditions - eg joints, heart/lungs, depression - the condition contributes to being overweight as much as vice versa in a vicious circle.
It annoys me that there are still people who do not take the condition seriously. 'It's all in the mind,' they say. Yeah sure. Your mind is telling you you desperately want to do something but you know the body lets you down.
Years ago, I fully endorsed the idea that if you were lucky enough to do your hobby as a living, and as long as it didn't interfere with your responsibilities to your children, for example, then do it. (Which is not the same as saying that you prove your capability at a routine job by accepting a macho culture of presenteeism).
In theory, I still believe this, but in practice, I can't see how it's possible - I no longer understand intuitively how people can push themselves for 12, 16 hours a day, 6 or 7 days a week, week upon end. (I could be cynical and say it causes burn-out, and it does for some, but not for all, or most).
I never used to be able simply to relax, to sit and vegetate, to watch TV purely as a pastime. I always had to be multi-tasking; even sitting in a pub was best when conversation was active and stimulating (still can't do small talk, idle chit chat; bores me rigid). Watching TV was justified by a paper sort or ironing, or a fact-finding/educational experience.
Sometimes I think I am so well recovered that the future is a trajectory. It's possible to look at people who have had CFS and recovered to lead lives uncompromised by it. There are many many other people who live with it and give the impression of living normally, because they are able to manage it, hide the 'bad days' (and so many conditions have bad days), and ration how they apply themselves to tasks.
So I am slowly coming to an acceptance that there will never be a magical time when I return to normal (when 'normal' was working 9-6, followed by a Council meeting, followed by drinking in a late night bar to silly o'clock in order to get up to be in work again the next day, or work could often mean 9-9, or staying up overnight to finish a report). I wouldn't want to return to that, but I wish I could, say, work a full day, and then use the evening to go swimming or to a concert AND get some chores done AND do something constructive on the PC, without feeling there's a price to pay).
And then there's the agoraphobia. But that's a whole different story, for another day!
