Notices by Valerie Roney (vlrny@disabled.social)

Not to brag, total brag, but I have survived the week.

Booya! 💪✨

If you also have survived the week, feel welcome to brag as well.

At this point I think I have to just shift and plan for this kind of brain for a while. I'm struggling with how to stay connected on here, this community really matters to me, but the frustrations in finding windows of language to respond to replies, to not be able to engage in discussions and banter are making it feel like a burden not a joy (to clarify, the obstacles in my brain are a burden, not the lovely thoughts and comments from you lot).

So Feb was pretty awful as my cognition and language unravelled. I lost most of my reading comprehension and visual processing, and was just straight up mute for good stretches of time. Also BOO, very boo.

But it did illuminate I still have active inflamation in my brain the steroids were helping. YAY?

I have been a couple of weeks on a more appropriate dose and starting to feeling better, but the language stuff is still a struggle. Frustratingly so. Definitely BOO.

Ok rambly (because pfft executive function) update on my life, my health, and my brain, for anybody following that, and maybe a query for feedback, suggestions, commiseration.

The end of Jan I switched from prednisone to hydrocortisone, which was a huge YAY as it turns out I was quite sick from the side effects of the prednisone (lots of brain/autonomic nervous system stuff).

But we undershot the conversion by about 1/3 and I crashed horribly. BOO.

So the question becomes, how do I stay connected, mostly sans language, on a mostly text based platform.

I don't know which parts of my brain are the obstacles at this point, I have more access to language (w limited stamina), but I think there are executive function things like initiative and decision making that just kill conversation and engagement capacity for me. Weird. And frustrating. And isolating.

*invitation to infodump*

Am interested in anybody's thoughts on what appears to be acquired ADD from long covid on top of the autism. My brain OT observed: losing a capacity in general PLUS losing the capacity in whatever part of my brain compensated for the autism wiring is a double whammy. I have to learn a whole new human interaction protocol, with a different brain.

Some of that will be hacks, but some of it will just be adjusting expectations, and maybe leaning into being more quirky.

aaaaand #irony wins the week.

#mood

@LevelUp
☝️
@bmoore123
@JustGrist
@FrostPoem
@Fragglemuppet
Screen reader coaching?

Fekkin daylight savings time. 🤬
I spent all winter waiting for dawn to catch up to morning, and was really enjoying it finally starting to align, waking up to gentle skies.

Now I'm back to turning on all the lights to try and tell my brain it's morning while it looks out at a black sky and says pfffft!

Jumping the clocks forward an hour has completely demoralized me.

And trashed my circadian rhythm.

But yeah, we gotta do it every year, because ....reasons. 🙄

#dst #DSTcanBiteMyBum

@peertube oh! The irony of not having any alt text on the image re how to do subtitles. 😘👌
#accessibility

Ok there's this account I follow on @joybooster that toots a poll every 20mins about what move to make next on a lil #pokemon game. But voting is sparse (which makes me weirdly sad).
[insert some joke re the joys of being opinionated I am too tired to make]
👇
https://tomkahe.com/@pokemon

General update:

My brain appears to be shut down for repairs.
Will be afk for a while.
Am ok-ish, just feel "elsewhere" while I sort through some stuff and recover.

Be as kind to yourself as you can mah dear trunkies. These are hard times, it's ok to lean into the soft things for a while.

Sometimes the only thing getting me off the couch is the fact I have to pee.
HYDRATION MATTERS, PEOPLE!

Ug. I am once again reminded how fucking annoying unsolicited advice is when you're chronically ill.

So if you don't want to get a sharp dose of stink eye from somebody working unfathomably hard to deal with issues you don't even comprehend, maybe don't do that, yeah?

This is probably a good time to remind folks I have a @joybooster account that I hide out in and just boost shit that makes me happy. Content may include:

Slime mold
Bee butts
Good trouble
Bad puns
Cool community stuff
Mending, hacking, and repairing
Folks nerding out their special interests
Good art
Bad art
All the moss and trees and birds n sky n happy outside stuff
Utter bloody silliness

#timelineCleanse #hopePunk #solarPunk

Under the theme of: I took the road less travelled, it was unpleasant so I backtracked and took a new path....

I put on some kinda ill fitting knickers this morning, making me uncomfortable, crabby, and unsettled. I switched them out for a second shot at inner peace this afternoon.

Don't let anybody tell you small changes don't make a difference.

@GreenSkyOverMe @WeirdWriter
"I made a writing garden. It's full of weeds. It's messy. Nothing is polished. It's not perfect.
We have cookies.
I miss your voice."
😭

Oh, I am settling in to meditation. Join me whenever you read this toot, whether a full meditation, taking a restful moment, or just stopping to take a single mindful breath.
#sitTogether
#readThisTootThenBreathe

Hey @LonelinessCorps
Your mission, should you choose to accept it, is to trawl your favourite tags n interests seeking out any new folk trying to find their way or build their circles.
Nerd out!
Let yer freak flag fly so they can find ya!
👇
https://disabled.social/@vlrny/115323995492042594
#lonelinessCorps