I’ve been getting a painful up close reminder of how much being sick takes away from you. I still haven’t got through this pain flair up, I went off to the doctor yesterday who increased various meds, all of which have terrible side effects. I can’t get any decent sleep because the pain wakes me up all through the night and nothing much reduces it. It’s all a bit of a mystery, there’s nothing I’ve done to set it off, it’s not lack of self care or anything like that. There’s no reason I should be having regular flair ups. The usual story.

I find I can be pretty philosophical through a few bad days or weeks, but once it runs on too long or the pain level gets too high I start to run out. I’m spending half my time crying at the moment I’m so depressed and frustrated. Wednesday night was my sculpture class which I had to miss again. I have to cancel the rest of this week to keep medical appointments and have tests done. I remember this world, and even a small brush with it like this is terrifying. There’s so much grief in being ill, such a profound sense of loss.

Watching my peers go off to university while I was too sick to cook my own meals or bath unaided was an excruciating time in my life. Fear, misery, humiliation, and painful empty hope tortured me. Chronic pain is an evil thing that warps you, you notice yourself changing, becoming irritable, angry, losing your joy, and you watch it all happening and fight it with everything you have but you don’t always win. Then comes the shame, the fury with yourself for how weak you are, that if you only tried harder, you would be better.

You watch the toll it takes on relationships. You want to know the divorce rates when one partner has a chronic illness? Want to know the suicide rates? For the first episodes friends don’t take it personally when you cancel on them. After a while they decide it’s simply kinder to stop inviting you. It’s like watching your blood running down a drain from a wound you can’t staunch.

I remember this world. Going through a supermarket in a wheelchair and cringing under real and imagined glances of disbelief when you haul yourself upright to reach an item out of reach. Being taken aside to have whispered conversations “The rest of the students don’t understand why you’re using a scooter when you can walk”. Caught constantly between the pain of walking and the humiliation of assistance. Limping back to the car bent over the supermarket trolley handle to try and take the weight off the hip that is screaming. Biting holes in my lip to distract me. Staying home for so long the outside world became a memory, a dream. Tolerating whatever I had to do to be able to get back out there. But then, the feeling that my chair dominated me, that I didn’t have enough personality to fill it and radiate out beyond it, not enough confidence, that instead it defined me, caged me, engulfed me. I so badly needed another friend in a chair.

The assumption of personal failing, constantly having to deny that you have in some way done something wrong to bring this down on yourself, it’s type A personality, it’s about not enough sun, it’s because you don’t exercise enough, it’s because you exercise too much, it’s about blood sugar, about vitamins, about rare viruses, it’s all in your head.

“I hate myself” has been on loop for days now. I don’t hate myself. I just really, really, don’t want to be sick, I’m very tired and there’s a lot of bad memories in my head.