#sometimes i frrl like 15 illnesses in a trench coat pretending to be a person

[softness-and-shattering]

Thanks :)

Bodymind isnt my term but idk who to credit it to. I like it a lot because it says everything it needs to say. Its a bit like, growing up I saw bodies as a collection of parts to like or dislike, yknow like the mean girls scene in Reginas room? And at some point I was like wait, im not a collection of parts, Im one whole connected body actually. Bodymind is a similar kind of thing. Theres no separation. Its all one system.

Fog of illness + unreliable sense of time is really a thing for sure. I "waste" a lot of days resting so Ill be better on other days. Sometimes particular days if I have an appointment or something, sometimes I just feel bad so I dont push myself and then its been another day week month. It bothers me that I dont get the time back. Pushing myself would lead to more fatigue more crashing better more lukewarm days than struggle->worse pain->less time conscious->more frustration. And resting can be nice and chill and cozy. But theres so much I want to do and Im constantly whittling down my ambitions into the tiniest possible form that I might achieve a step toward on a good day and that has to be my victories. I dont want to always be whittling down my ambitions.

For me fatigue is primarily a heaviness and a sleepiness but not usually an enjoyable sleepiness. You ever been asleep so long you end up semi-lucid wishing to be awake already, and then you wake up and your body is exhausted and heavy and slow. And sometimes you drop off again and your sleeping mind is like !!!!wake up already!!!!!! and when youre eventually sort of conscious its like 10pm youve slept all day and now what. And a few hours later you could go to sleep try get normal sleep so the next day might be okay but youve already slept so much and you just wanna be conscious and alive for a while?

This is weirdly nice to talk about? Its not quite complaining, and not always turning to the bright side like when youre talking to loved ones who worry about you. I think this might be good for me?

And dizziness too i really dissociate a lot from my body. I wish i didnt have to. I wish I could better manage my symptoms I mean my unpleasant experiences of existing alive in a body. Its like when a dr or a form asks what your symptoms are and how they effect or kimit your life, and its like, I havent had to cancel social plans in the last fortnight bc I know not to make any. How does it impact my regular life? This IS my regular life, what am I even supposed to compare to anymore?? When did I last have a "normal" life, did I ever? Will I ever?

what does your chronic illness feel like? here’s a place describe your fatigue, describe your pain (if you are in a space to).

i was reading the essay “on being ill” by virginia woolf, and she discusses the poverty of language we have for describing illness, because no healthy person wants to write about it. and certainly no healthy person wants to hear of it. but because of that, we are missing such a huge chunk of human experience, certainly of the disabled experience.

she says if we take “our pain in one hand and a pure lump of sound in another” we will at last be able to describe it.

i feel like a lot of the time we don’t go into detail about what exactly we’re feeling, because it’s never accurate enough, or people don’t want to hear it. but because we don’t, we have so few ways of expressing our pain, and because of that it is harder for those of us in illness to connect. so let’s start now, be imaginative, make up words; let’s create the language for it at last. what does your illness feel like?