I've just launched a GoFundMe for my friend who desperately needs a scooter/powerchair. Her current one is far too heavy, damages her back, and is now also dying, meaning she is basically stuck.
She has a whole bunch of illnesses including COPD, long covid, and is neurodivergent.
If you have some spare cash, it would be so appreciated.
Boosts encouraged.
Is there a person you can hire (NOT an interior designer) who comes into your room and helps you set it up to be accessible for your physical and brain needs?
I know I could change things in my room. Move things. Get different storage. Do stuff to make it more accessible for the life I live now but I don't have the brain nor energy to actually do it.
Is there a person you can hire (NOT an interior designer) who comes into your room and helps you set it up to be accessible for your physical and brain needs?
I know I could change things in my room. Move things. Get different storage. Do stuff to make it more accessible for the life I live now but I don't have the brain nor energy to actually do it.
Afternoon Twters.
Fatigue has hit like a truck today so despite a good sleep last night, I'm back in bed because i can no longer keep myself upright. My mind is not in need of rest, it's firing on all cylinders, but my body is broken today... I'm weak as a kitten. 😴
Gaming people, especially chronically ill gaming people, how light is the SteamDeck?
Cos my thinking was that I could game lying down in bed easily with my controller if the fucking window would stay open (cont later).
Whereas if I'm reading or knitting or other stuff like that I'm sat up and lean forward and don't rest my neck.
I'm the same with my phone - can't lie down with it. So I'm thinking a SteamDeck might be the same issue.
1/2
This is fine. If I say it enough it becomes true.
This is fine.
This is fine.
This is fine.
Note before replying: I know but rest is triggering my trauma. I have a bunch of stuff that makes rest and stopping doing things hard (on top of capitalism). I am doing my best. Please do not tell me I just need to rest.
I have been being led astray (read: sucking at self discipline) with too many late nights chatting after DnD this week.
It worsens the fatigue but moreso it worsens my chest pain and ability to breathe.
So today I am running an event at incredibly low capacity and I regret my life choices.
Past Lexi did not do good.
Good thing happened to me today:
I got a diagnosis.
Its been 13+ years.
Ive been looking for these answers for 13+ years.
Today, i stop looking and start treatment.
Im not sad about the diagnosis
Im sad that it took 13+ years and being disbelieved, dismissed, belittled and gaslit by so many doctors across all of that time to get to this moment.
Its weird to be this relieved at receiving news that i have an incurable condition
If youre in the hell that is undiagnosed limbo, just know that your suffering is real and its not diagnosis that gives you validity. You deserve answers, and you shouldnt have to fight as hard as i did to get them. Love you 🩷
Good thing happened to me today:
I got a diagnosis.
Its been 13+ years.
Ive been looking for these answers for 13+ years.
Today, i stop looking and start treatment.
Im not sad about the diagnosis
Im sad that it took 13+ years and being disbelieved, dismissed, belittled and gaslit by so many doctors across all of that time to get to this moment.
Its weird to be this relieved at receiving news that i have an incurable condition
If youre in the hell that is undiagnosed limbo, just know that your suffering is real and its not diagnosis that gives you validity. You deserve answers, and you shouldnt have to fight as hard as i did to get them. Love you 🩷
Mistakes were made.
I was only at 7/10 pace points an hour ago so I figured oooh I can make strudel too.
No Lex, you are chronically ill, you can't just whip up a strudel.
3 pace points, one heart rate alarm and one strudel later....
Heading to GP at 11 to try to start ball rolling with new GP about long COVID dx or tests or other dx or anything at all that might enable me to access health, know what I'm dealing with, and possibly deal with the symptom.
A new, short piece today.
It’s about winter in Scotland, the limits my body is setting right now, returning to photography after months away, and the common ground between my creative practices, where I can see the same voice carrying across both. Lots of photographs in this one too.
https://kristiedegaris.substack.com/p/from-the-road
#Scotland #Photography #LandscapePhotography #Landscape #Writing #ChronicIllness #Health #UK #Women
I am grieving hard for my inability to go get lost in forests since I became disabled.
What, if any, indoor trees are available for me to grow at home?
I already have a room filled with spider plants, 2 avocado plants (one trying to die), a Monstera, a snake plant, and a dracaena marginta.
I would like a tree tree, something native to the UK, something that feels foresty, but can live happily indoors and ideally with minimal care needs.
I am no longer interested in participating in the human condition.
In other news, I thought I might start a book club.
Yeah, I'm pretty sure 123 is a normal heart rate when putting shopping away... /Sarcasm
Folks: I'm putting together a raffle to raise funds for a wheelchair for a friend. The chair itself will cost £5140.
If you're a business who would be happy to donate something towards this, please let me know.
If you have other ideas for fundraising, please let me know.
I have no link yet, I'm just getting raffle prizes together at the moment.
Aldercone's havin' a really rough couple of months! Sickness abounds.
Buttttt we're working as hard as we can on all of our many projects! We'll likely have 3 projects coming out this month! See replies for more info!
Back our weird work on https://comradery.co/aldercone and check out our stuff on https://aldercone.itch.io
#mutualAid #chronicIllness #IndigenousMutualAid #indieGameCollective #indeGameDev #itchio #CreativeNatives #artCollective #queer #autistic
Freelance person that wants me to tell them their accessibility overlay did a good job.
Hey, can you look at random Website dot com and tell me if Y accessibility overlay is good?
Me. Without looking at the website because I *know* it will be shit. Sure I can bill for writing up a 20 page report on why this overlay fucked up your website. This will be fun.
Them. Great! Let's hop on Zoom with our marketing team. Nobody in the actual web development, only marketing and manager dipshits and then you can painstakingly go through the website, even the text heavy pages, and tell us our accessibility overlay is shit while we act profoundly baffled by this news for almost 2 hours. Won't that be a fun workday?
Me. Oh fuck, I'm so sorry my dudes, but I am very busy until 2027.
Them. Why?
me. Cancellations like the one I'm gonna do to you in 2 seconds. Take care now, bye bye then.
Aldercone's havin' a really rough couple of months! Sickness abounds.
Buttttt we're working as hard as we can on all of our many projects! We'll likely have 3 projects coming out this month! See replies for more info!
Back our weird work on https://comradery.co/aldercone and check out our stuff on https://aldercone.itch.io
#mutualAid #chronicIllness #IndigenousMutualAid #indieGameCollective #indeGameDev #itchio #CreativeNatives #artCollective #queer #autistic
![fun fact: your internal body temperature rises when you are infected because viruses are using your body for bitcoin mining [pic of a guy's internal temperature and there are some blues, yellows, orange and some red. and an arrow toward a guy that is mostly red with a bit of orange and yellow]](https://files.mastodon.social/media_attachments/files/115/837/422/825/863/147/original/7eed4a1b0ec6f0c1.jpg)