Grim

Tourette Syndrome and other chronic illnesses

[skele-tics]

I figured I should make an introductory post.

Hi I’m Grim! I use any pronouns

This is my space to talk about all my health issues. I have Tourette syndrome, POTS and suspected hEDS and I post a lot about how that affects me and the funky medical issues I experience

[phleb0tomist]

it’s such a basic part of the reality of disabled people as a whole but it’s STILL so hard to get ppl to understand that some people will simply die without 24/7 care. their care is not for comfort, it’s not for fun, it’s literally a matter of life and death. “if their care was taken away i’m sure they’d learn to suck it up like the rest of us!” – something ive heard time and time again. no they wouldn’t, they would die. they HAVE died. they continue to die as cuts are made to welfare and health. why is this so impossible for people to grasp.

[skele-tics]

I went into a store today for the first time since January!! And I barely sat down on my rollator!! I mostly walked around the whole time

[skele-tics]

I’m trying out compression shorts to help with blood circulation and oh boy is it hitting the sensory issues

[ratbuffoon]

Does everyone justify people having health complications because of a weather change or is it just the Balkans bc I'm going to go crazy over people justifying the craziest health cases with "It rained after a few warm days"

[amons-hat-enthusiast]

It's a legit reason for health complications happening btw.

My symptoms actually get worse when the weather changes. My chronic headaches get much more severe when weather changes, especially when it's about to rain. I'm more likely to experience rheumatoid arthritis flareups when the weather changes (again, especially if it's about to rain). Some people are just more sensitive to even the slightest of changes of barometric pressure. The cause of this is not yet explained, but it is well documented.

Just because you don't understand something, doesn't mean it's not real.

[teal-deer]

Hi US American here. My friends and I sometimes track weather changes across the country by who is getting migraines and achey bones at what time. It's deffo not just a balkans thing.

[jabberwockypie]

Also in the US. Weather and barometic pressure changes can definitely cause migraines, aggravate chronic pain, asthma, flares for a lot of chronic illnesses generally, and probably some other shit that I'm less familiar with because I don't have those problems.

[skele-tics]

Having conflicting conditions is so annoying because I’m being told to use dark mode to help with my issues with screens but I can’t use dark mode because it fucks with my visual snow syndrome and makes it hard for me to use screens

[skele-tics]

I am once again asking to not be a human barometer

[rox-and-prose]

Stop Making Psychosis A Villainous Trait Challenge

[rox-and-prose]

Stop Making Scars A Sign Of Evil Challenge

[rox-and-prose]

Actually, you know what? Stop Using Disability As A Shorthand For Evil Challenge

[zylahbee]

sexism in medicine kills people. racism in medicine kills people. fatphobia in medicine kills people. queerphobia in medicine kills people. classism in medicine kills people. ableism in medicine kills people.

do not downplay people’s fears about being mistreated because they are a part of a marginalised group. it is a matter of life and death and you should be angry about it.

[skele-tics]

I gotta say I appreciate that tumblr lets you report ads for flashing lights but it sucks so much that other platforms don’t have that. I should be able to report something that negatively affects me and not see it again. And advertisers need to stop making ads with flashing lights. They’re gonna seriously harm someone

[skele-tics]

I want a wheelchair so bad because a rollator doesn’t do much for me and I know my insurance would never cover it which is so evil

A rollator gives me a few extra minutes of standing time. That’s still not enough to go most places

[visorforavisor]

I think disability justice would be easier if abled people understood that being disabled is a mixture of all three of

I can’t do that without negative consequences

I can’t do that unless I have support for it

I can’t do that

and that trying to treat one of these as if it’s another one will get you nowhere.

[skele-tics]

Being on anti-depressants is so weird because I know logically that I felt like shit about my situation and I should still feel like shit about my situation but now my brain is like “the sun is shining :). Birds are chirping :).” Like what are we doing???? Where is this coming from???

[rimonoroni2]

there should be a such thing as a medical detective. you should be able to hire a doctor to figure out what the fuck is going on with you come hell or high water by consulting whatever specialists they can get their hands on, connecting your constellation of symptoms, etc, instead of 10000 different doctors for every distinct bone in ur body that all just kinda go "dang that sucks idk" when you present with more than one fucking symptom

[mindflamer]

honest to god we've got to start naming the elderly as a vulnerable group & calling their disabilities, disabilities. we sugarcoat and distance these things by only calling them "elderly," "old & frail," etc. most of them are disabled.

too many people completely separate disability from themselves in their mind. it's something that happens to other people. other sad people i don't want to think about. are they really even people, it's too much to bear thinking about that happening to a person... those background characters over there. it would never be me, i can't cope with thinking about that possibility.

this mass denialism of the fragility of the human body (YOUR human body) has created a whole category separate from the disabled - the "elderly." since anyone can join it if they live long enough.. no they can't be disabled. that's scary, and worse it's political. so they are just "old." so what they lost their hearing, their mobility, their heart function? that's just how it goes for old people. as if that's not a person as real as you. as if you wouldn't be devastated if that happened to you today (and it can btw). as if you won't be when it's your turn to be old, and disabled.

simultaneously the disabled are dehumanized as not people, and the elderly are dehumanized as not disabled. so the illusion of disability as separate can be upheld.

[artsekey]

Listen to me. I. Will die. On this hill.

My grandparents lived to 98 and 103. Read that again— 98 and 103. My grandmother died 5 months ago and was born in 1923.

She was extremely wealthy. My grandfather left her millions. She paid about 13,000 a month for her care.

And her nurses abused her. She could do nothing. She could not speak for herself, feed herself, clothe herself, and the humiliation they made her endure was disgusting. When she tried to express discomfort, they gave her drugs to “keep her calm” (keep their shift easy). We fought like HELL to hold that fucking place accountable. The only reason we were aware is because we hired a private nurse on her behalf, too.

The elderly are a massive, extremely vulnerable, and disabled group. You cannot leave them out of your advocacy, you cannot leave them out of the conversation. “They’re loud, they smell, they’re opinionated, they’re rude, they make me uncomfortable”. I don’t care. I don’t care! They need your advocacy too! I want you to think, if my grandmother— who was in the best retirement home she could afford, with a personally hired third-party nurse to step in where the other carers failed, had such abhorrent care… what about everyone else? What about all the elderly who don’t have a support system?

Don’t leave them out.

[skele-tics]

I forgot to take my time specific meds for the first time so it’s gonna be interesting to see how I feel (the answer is going to be like shit)

[skele-tics]

I wish I could stop having to do hard things