I keep thinking that I’ve beaten my CFS (chronic fatigue syndrome, post-viral chronic fatigue – call it what you will), or at least that I’ve gotten it under control, but every so often, up it pops and bites me on the bum.
Let’s be clear: I am so, so, so much better than I was. But bad days, and weeks still happen, and I’m not 100% of my former capacity. And I don’t know if I ever will be again.
I’m deep in another fatigue-dip, the first since, oohh, October last year. I’ve been here for a week. Last Monday, I felt, well, a bit crappy. On Tuesday, I woke up and felt as if I’d run into a brick wall. Actually, I’m sure there are better descriptions. Let’s see. Imagine you wake up, and a switch has been flipped. All of a sudden:
- You are moving through thick treacle, so it takes twice as long as usual to get ready for the day;
- Simple mental tasks, such as adding two numbers, are impossible;
- Your arms feel weak and heavy; even winding yarn feels like far too much work;
- You feel, inexplicably, as if your centre of awareness has been moved to the back of your own skull, so you are looking out down a long, poorly lit tunnel;
- You are so clumsy! You are liable to smack your arm on the doorframe as you walk through, or stab your hand on the contents of the dishwasher as you put something else in it;
- Walking up the stairs makes you breathless – yet normally, you can run a mile or so;
I could go on, but I can’t think straight. I can’t remember the other things I could list. I have brain fog.
There’s an irony in the fact that it’s only as I get generally better that I realise how ill I have been, and how genuinely crappy this makes me feel. I used to feel like this every single day, and yet I vaguely felt that I should be able to put on my big-girl panties, and just deal with it.
Part of the problem, I think, is that chronic fatigue is insidious in onset, and because most symptoms are are mind-issues rather than body-issues. It’s hard to recognise that the symptoms really are present and to give them their due. And there is the ‘psychological fatigue trap’; I have no pain, just fatigue (and there we go. Just fatigue.) Everyone’s tired, right? Why can’t I just have an extra cup of coffee and deal with it? How tired could I possibly be, anyway? Feeling tired isn’t feeling ill, surely?
So your symptoms are difficult even to discuss. On top of the actual symptoms, you have secondary, additional symptoms, like shame. Would I rather have a chronic pain condition? Hell no! I am so glad that I am no more in pain than the average man on the street – but sometimes, I think it would make things easier to explain, even to myself. I wouldn’t have to apologise for only feeling tired, or rate my illness as less bad than someone else’s, just because everyone gets tired.
My recovery from the worst of the chronic fatigue has been like climbing out from the centre of an onion. Each time I escape a layer, I look back and see the difference, and am amazed that that’s how it was. And think, “But I’m better now”. Except I haven’t been, really, not yet – and a few months, or a year, later, I shed another layer. At no point have I realised how not-right I’ve been; I only see it when I’m past it.
For years, I have been frustrated with the very typical CFS ‘survivor’ quote, which boils down to, “The key to getting better was to accept that I would never be able to do as much again”. In my mind, that translates as, “I am not better, but I am as good as I’m going to get”. That takes a lot of accepting, and I’m definitely not there yet.
But there are parallels between living within your health means, and living within your financial means, in that accepting today’s limitation usually means that tomorrow will be sweeter. There is no point in borrowing against your future energy (or money), because if you do, you will lose a lot of it to the interest repayments.
I’ll continue to get better, and I’ll continue to have bad times. But, whilst respecting my limits (Ha! Or trying to), I need to stop letting the fatigue stand between me and the best bits of my life. When I’m tired, I get withdrawn. I stop posting here, stop socialising online or in person. And it doesn’t help.
Also, if I can document the course of this illness, maybe – just maybe – someone else can find some hope, or comfort, or guidance in my ramblings. And maybe I can encourage a tiny bit more openness about these weird conditions, that no-one can really understand, or cure, and which even the sufferers find it difficult to take seriously.