My body is deeply unserious.

I can’t believe this. I’m booked in to have a minor surgery on my feet to clear up infected skin that has failed to respond to other treatments. It’s on the NHS so the surgery is free, but they just told me I have to pay for a pack of dressings to take home (as the wound needs the dressing changed every day and the pack apparently contains something to keep the dressings dry in the shower.) This pack is bloody £37, and I have to buy two as both my feet are having the surgery. I can’t be the only one who thinks these packs should be free along with the surgery? And where am I supposed to get £74 while going through a benefit appeal? Just when I think life can’t get worse, it finds a way. Being ill/disabled is so bloody expensive!

the doctor agreed that EDS testing was worthwhile and referred me to a geneticist 🎉

and I only cried a little bit during the appointment so 🎉🎉🎉 😂

she was mostly very nice, but there were a couple of moments where I could feel her getting skeptical and I started getting overwhelmed, and I’m very glad I had the pleasantly stoic @shadowinlight@hexbear.net along to jump in to help explain things

I am currently in “dead fish flopping about gasping for air” mode. I’m lying flat almost all hours of the day unless I manage to somehow force myself into a sitting position (usually just to eat food). I’ve been skipping most of my classes because I’m too tired to crawl out of bed, let alone get myself across campus and into a chair where I have to sit upright for over an hour. I’m brain fogged to the point where trying to do anything besides watching mindless videos is too much exertion for me. I hate this so much. I feel utterly useless because in my current state, I essentially am useless. Every day is a drag yet also too quick at the same time. I just wish I had my old energy back.

🌰

Re: fine motor function. I’ve been really busy lately, extremely exhausted, and I can barely do anything involving fine motor. I’m struggling to type this right now, I type fast and am used to having to backspace, but this is taking me so much longer to type right now. Literally every couple of words. Was really bad today when I kept messing up and bumping the trackpad of my computer while taking notes. It would move the cursor to a different spot and then mess up other sections of the notes, which I had to take time to fix.

Sorry for venting yet again, it’s just frustrating, because I don’t feel like there’s much I can really do to help with the problem. I won’t do this again this week, I promise

Anyway, should really post something positive at least. I’m somehow managing my really large load of coursework right now, although it’s probably why my spoons are as depleted as they are.

Can anyone tell me about air filters? No energy to go look for information

Heard they can provide some protection from the COVID in an indoors space? How effective is that? I will probably move back to my family soon, they go outside a lot more often and I worry about catching COVID from them.

How big is the air filter? Do you just put it in a corner of the room or what? Are they noisy?

A lot of my hobbies are more popular with older people and it does hurt my heart a little when I see that they can do them more often and for longer periods of time than I can :/

For some reason after I wrote the “:/” the first suggested word in my phone was “gangstalking” lmao

Both sides of my family have history of disabilities. Some have neurodivergence, some psychiatric and many physical.

So it is almost insane to me when I encounter people with no disability or anything. Not even a single allergy.

I do wonder how much is generational trauma, colonization and the fast transition to industrial capitalism (we come from a place that rapidly transitioned within a few decades). I wonder how all that factors in all this.

i did thing. i feel just enough strength to do more thing. things are important. i am proud of myself.

it really sucks when ur disabled but if u don’t get on with the things then eventually it will be catastrophic so u just gotta do the things, but also be careful not to push urself in such a way that it makes u worse. i even went to a series of classes on pacing that were offered by the health service a few years ago and i put it into practice best i can. but there’s just something about like the material conditions of life, and how sometimes there is no chance to rest.

Really feeling the call of the abyss lately. How can I have hope for anything when we can’t clear the very simple bar of pandemic mitigation? I’m so tired.

i would really like to get an autism diagnosis, because it feels like it’s the root cause of a lot of my social issues, and i would really like support for dealing with that. and it might help towards getting disability aid ig but my doc said i should qualify without it

but the wait time for adult diagnosis is a year

Unfortunately I don’t have the energy to put together some info for the mega this week

If you want I’ve just uploaded the audiobook version of Exile and Pride Disability, Queerness, and Liberation by Eli Clare to TankieTube and there’s a PDF copy of the book available here. I haven’t read it yet but it looks interesting.

Here’s the publisher’s synopsis:

First published in 1999, the groundbreaking Exile and Pride is essential to the history and future of disability politics. Eli Clare’s revelatory writing about his experiences as a white disabled genderqueer activist/writer established him as one of the leading writers on the intersections of queerness and disability and permanently changed the landscape of disability politics and queer liberation. With a poet’s devotion to truth and an activist’s demand for justice, Clare deftly unspools the multiple histories from which our ever-evolving sense of self unfolds. His essays weave together memoir, history, and political thinking to explore meanings and experiences of home: home as place, community, bodies, identity, and activism. Here readers will find an intersectional framework for understanding how we actually live with the daily hydraulics of oppression, power, and resistance. At the root of Clare’s exploration of environmental destruction and capitalism, sexuality and institutional violence, gender and the body politic, is a call for social justice movements that are truly accessible to everyone. With heart and hammer, Exile and Pride pries open a window onto a world where our whole selves, in all their complexity, can be realized, loved, and embraced.

If you like the sound of it, you’re welcome to copy this along with the links into the body of your post as a substitute for other content. If you do I’ll delete this comment so it’s not clogging up the mega unnecessarily.

I hate being reminded of the fact that I can’t perform fine motor functions. I’ve gotten used to it when journaling, even though I can’t really read my handwriting, but I was trying to do a lab today and just kept fumbling and messing up the setup. I couldn’t help but constantly apologize to my lab partners almost constantly, and once they finished with their portions they had to help with mine, and I essentially had to step back and do other parts of the lab work. Ugh

Too autistic for the autistics strikes again

Things are louder than usual today