The fatigue is attacking me again. It’s crept up on me over the last month, its approach hidden by the same things that were causing it — the work stress; the fact that my wife has spent much of the last month away because a family obligation was inconveniently timed with a political obligation, the vomiting bug I picked up last week that stopped me from going to Thought Bubble….
But now all of these stressors have gone, and I’m left with The Fatigue.
Those of you who don’t have a chronic illness don’t know what fatigue means. You think you do, but you don’t. Even those of us who do suffer often suffer alone, because it’s an aspect of being chronically ill that most people (by which I mean medical “authorities”) don’t talk about. It’s not regarded as a big deal — after all, everyone gets tired, right?
Not like this. Not at all like this.
Because it’s an aspect of inflammatory illness that most of you will never think about. You’re very lucky. But people with ME, or arthritis, or some kinds of depression, or a dozen other chronic conditions know it all too well.
It’s the fault of my immune system. You see, when the body becomes inflamed, that’s usually because your immune system is fighting off an infection. And one of the things it does, when it’s doing this, is to make you very tired, so you go to sleep and your body doesn’t use up energy that could be used on fighting. And so, when you have the flu or something, you sleep a lot. But then you get better, and you feel OK.
When you have an autoimmune illness — or any other kind of chronic condition that causes inflammation — that doesn’t happen. You go to sleep tired, you wake up tired. Day after day after day. If you’re one of the luckier ones, like me, and your condition has peaks and troughs, eventually after a few weeks or months you *stop* being tired — until the next bit of stress comes along and triggers another bout of the illness, and you start to get tired again.
Sleep doesn’t help. Your body constantly craves sleep, but no matter how much you get, you never wake up any less tired than you went to sleep. Caffeine and sugar don’t help — you’ll pump them into yourself (if you’re lucky enough not to have a condition that makes you unable to) and you’ll get jittery and wired, but you’ll never feel awake.
You can’t concentrate. You can’t *think* — when the fatigue hits me, I have a huge amount of difficulty even finding basic words. I become aphasic, but more than that I lose concepts, I lose my ability to make connections. For someone whose life is entirely of the mind, like mine, that’s torture.
You get to understand, intimately, the meaning of the words “burned out”, which feel like they have a very literal meaning. You feel empty, hollow inside. You look like you’re just the same as you were, but there’s nothing inside and you feel that at any moment the shell will fold in on itself and crumble, revealing the nothing within.
But there’s still a heat there, inside. A burning in your eyes and in your brain, like you’ve rubbed chili juice into your eyes.
But the worst thing, the thing that tortures you the most, the thing that just keeps coming back to me over and over, is the fact that you can’t fix it, but that your body insists you must try. There is a constant biological pressure to sleep, even though you know that you’ll wake up as tired as you were when you went to sleep — and even though every other aspect of your circadian system is conspiring to keep you awake. If you’ve ever had your body’s drives telling you to do something you can’t — if you’ve ever had to fast, or gone without water before an operation, or things of that nature — you know how awful it is when your body is urging you to do something you can’t do, how difficult it is to master, even for a time, your biological urges.
Now imagine that those urges are telling you to do something, not only that you can’t do, but which you intellectually know to be futile. Imagine you were starving hungry, there was an infinite supply of cream cakes, but you knew that every time you ate one you’d vomit it straight back up, or imagine that you were dying of thirst on a raft on the ocean, surrounded by salt water. And now imagine that, because you’re not actually doing without the basic biological necessities, you manage to live in that state for weeks or months or years at a time. Imagine that you get the occasional reprieve, but know you’ve got a progressive condition, and one day the fatigue will come and will just never go away again, and that this might be that time.
And imagine that there was not only no cure for this, but that the medical authorities didn’t even care about it — that they heard you saying you were fatigued and simply said “well, we all get tired” and then spent all their time caring about your joints or your weight or something else that doesn’t bother you at all in comparison.
Imagine being trapped in a situation where your body, where every biological instinct, is urging you to relieve yourself by a method which you’ve known, since you were a baby, solves that problem, but which now doesn’t.
Of course, I know far too many of you don’t have to imagine. Far too many of my friends have ME, or arthritis, or fibromyalgia, or any of the dozen chronic conditions that make you feel like this. But for those of you who don’t, that’s what it’s like for many of us.
(And this is also gendered — I am a cis man, but these conditions seem to affect women far more, and to be dismissed far more when they do. The patriarchy is a big part of society’s ableism towards this kind of condition).
And it’s back again for me, after a few months of not feeling too awful. And, like every time, I’m hoping that this time isn’t the last one, the one that just never ends. But it feels like it is — like every time — and it’ll probably last for months. The bad patches have been getting longer, and the good patches shorter, and yet I still never remember what this is like when I’m in the good patch. I can’t. My body won’t let me. Perhaps that’s a good thing.
But anyway, the basic point here is — if you see someone talking about how they’re fatigued, and they’re chronically ill, this is what they mean. They mean something that destroys your quality of life more than any other symptom, they mean something that destroys your personality and your thought processes. They mean their life is being slowly drained away and that they’re being destroyed bit by bit, by a craving that can never be sated, by a drive that can never be fulfilled, by something that seems the simplest, easiest, problem in the world to fix — you’re tired? Have a nap! — but which can never, ever, even be ameliorated.
I’m so tired of being tired.
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Oh wow, I don’t think I’ve ever seen anyone else describe that horrid sensation behind the eyes before. Uh, solidarity?
Yeah, I thought you’d probably be able to sympathise with this. Sorry I was right :-/