Sometimes I want to write about my experiences with Chronic Fatigue Syndrome, as a way of sharing what I've learned in case it might help someone else. But, I also live in the UK, which has a vocal subset of the population that enjoys basically stalking disabled people to convince themselves that someone is "properly" disabled. Scotland has less of this (I think?), but still.
So I wrote a not quite a poem about it. Because my experience goes from hope to rage and back again, so does this.
(There's no alt text option here, so the above image is a sketch I did of a pothos plant. Only the stems of the pothos are visible, twisting down around the brown plant pot, but there is a mysterious plant growing in the same pot with narrow, long leaves. I drew this while listening to a discussion panel, then coloured it with pencil and outlined with some Bic fineliners.)
Get up.
Get up again. I know the blankets are warm and comfy, but this is only for a moment.
Enjoy your height, all five foot nothing of it.
Read a sentence.
Read the sentence again, because it slipped out of your mind while you were reading it.
Look at the books you used to read, try not to cry because your brain just won’t.
Eat a fruit.
Yes, food is expensive but also terrible here, but don’t eat your rage.
Cry your rage. You are filled with high quality snot and letting it out is not a shame.
Get dressed.
Wearing the same clothes all the time eats away at your self.
Put on your nice clothes to walk to the kitchen, because you can’t leave the house anymore.
Quit your job.
Because your boss has no understanding of legal requirements and your union is disgusting.
Sit in the sun.
Next to a house plant. You can’t go the park, but you can pretend the park is here.
You aren’t about to photosynthesise anything, though it feels nice.
Write a thing.
Because your brain is all fanckled up, and it won’t unfanckle itself.
And if you do it enough, it will help.
CFS, man. It'll fuck you up.
I hope you enjoyed reading this, or just felt something.
Take care of yourself!