Time for the latest dispatch about anxious cat Chance and my mobility aids, this time featuring my new drive wheelchair and delightful wheelchair cushion

(Side note, I got the gift notes, they're so sweet tysm.)
Anyway I have been easing in to using my wheelchair because I don't want to overdo it and make my shoulders super angry

Plus I still have lingering not-COVID and so I'm trying to be responsible and not wheel around my neighborhood
Anyway I wheeled myself to my mom's room to chat with her about something, and Chance followed me and went directly to the other cat's food bowl

So I wheel towards him thinking he will stop because new object, but he just ate faster
So once I removed the food, Chance seemed to finally notice that I was in a chair that moves

And instead of being strange object danger, I think he was delighted
Chance has always preferred humans who are sitting down rather than looming over him

And now his human had discovered a way not to loom! Brilliant!
Plus since I was sitting down, clearly the entire purpose of this device was to ensure the human's lap was always available for Chance

So, wheelchairs mean laps for Chance
The only thing he doesn't like is when there's a narrow spot and I bump into things, but since I also bump into things when walking thanks to my ridiculous proprioception... I think Chance is a fan of the wheelchair
Today I used it while I was in the kitchen, either for getting stuff on the other side of the kitchen or taking breaks from standing
And omg all my hypermobile friends who use wheelchairs were correct, it is so effing helpful

Like typically I would have to nap after what I did and possibly be too tired to actually get downstairs to my bed

But not today!
Using my wheelchair also meant that for the periods of time when I did need to stand, I could actually do so with halfway decent posture

Because my muscles weren't so fatigued from standing that I started subluxing important joints
I am hoping to maybe put a small folding table in the kitchen so I can sit in my wheelchair and do prep etc. (My counters are the right height, but there's nowhere for my legs to go.)

However I live with family so I have to see what other people think
I also got the supplement and the cane holder and the orthotics and possibly some other gifts that are still in post-mail quarantine, and I just really appreciate the help and support
[dietary restrictions]

Plus the supplement has caffeine which I find really helpful in small doses for brain fog, especially because for MCAS reasons I can't have tea or coffee. And my new intracranial hypertension med makes carbonated drinks taste very gross.

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More from @UntoNuggan

22 Nov
Definitely. I have a thing where...I don't know how to describe it except "words are hard"

And like, technically I can usually force myself to speak in those situations?

But I often don't say what I actually want to say, and also then I can't really talk for a day
Or like often even when words are hard, I can talk to my cats because they care more about tone of voice than what I'm actually saying

(Tho I have called a cat by the other cat's nickname in this state before, and the cat noticed but forgave me.)
I end up feeling really rude, because sometimes family members see me talking to the cats and assume I have hit the point where I can have a conversation with other humans

And I can fake it while we're relying on social scripts (how are you? etc)
Read 8 tweets
21 Nov
Hey #LongCovid folks,

If you're feeling really isolated and like no one understands what it's like to get an infection and have your body change forever

I just want to humbly suggest that disabled people (especially chronically ill ones) are here for you
I have an assortment of disabilities, but one you might find relatable I'd that when I was about 25 I spent a week or so feeling awful

And then I could barely stand up, and I kept falling over
It took me three years to get diagnosed with dysautonomia, in my case most likely POTS

And a lot of what I do on Twitter is about helping support people who have some mystery illness, especially people medicine has basically abandoned
Read 22 tweets
21 Nov
[Dietary intolerances]

Before I knew I had #MCAS, I did not think I would ever be celebrating a day in which I got to eat something with vinegar but here we are

(It's rice vinegar, and my body is ok as long as I don't have it every day.)

Vinegar is so delicious 😭
[Dietary restrictions]

Also PSA if you really want to make a salad dressing but are avoiding/minimizing vinegar and citrus

I have had luck with either tahini dressing (YMMV, sesame is a no for some obviously) or making a bastardized citronette with 100% cranberry juice
[Dietary restrictions]

I think 100% pomegranate juice would also work

I've tried apple juice, which is obviously much less acidic, and it didn't really emulsify but it was still pretty delicious
Read 8 tweets
20 Nov
I think it's funny (in a lolsob way) how Sia wants Autistic people to watch that movie before judging it

If Sia had been paying attention to Autistic people, she would have realized that the publishers of Finding S.A.M. just tried that exact approach
So when the publisher told Autistic people we couldn't judge unless we read the book, some very wonderful Autistic people did and posted a bunch of excerpts with criticisms

Eventually, the book got pulled (it was really really bad, so this is a good thing)
Plus, it's not like people are especially creative when they make really terrible depictions of Autistic people in film, books, etc

The idea that Autistic people can't recognize those patterns and harmful tropes is honestly kind of insulting
Read 5 tweets
20 Nov
[Inpatient psych]

I think a lot about how this one psych hospital I went to had just really disgusting showers.

I was there several times over a period of several years. People always complained about the showers. Staff always blamed patients for not cleaning up.
[Inpatient psych]

And like, idk maybe if a hospital has consistently had a problem with disgusting showers for years, whereas patients are only there for a short time...

Maybe the hospital is the reason the showers are so gross 🤔
[Medical BS]

And the gross bathrooms are just one small example

But I think it's really representative of just all the times there's actually a structural issue or whatever, and medical professionals blame individual patients for making bad decisions or whatever
Read 4 tweets
20 Nov
Watching The Crown because I have no energy and need some distracting trash, and thinking about how apparently Charles called Camilla every day to talk and like

Honestly based on his dialogue in the show (and cough excerpts from the newspapers cough), it just sounds exhausting
Listen to the rich privileged man complain about his marriage, how much it sucks to be so rich and privileged, and maybe a side of like... tampax related phone sex?

I do not see the appeal
For awhile I was trying to figure out how Camilla even had the time to talk to Charles so much, since she has like. A life and children etc

But then I remembered she was also rich and privileged, and had servants for that sort of thing
Read 10 tweets

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