Dysautonomic Zebra

POTS, hEDS, CFS/ME, MCAS, autism, Raynaud’s, depression

[dysautonomia]

Is there a term for non-disabled people who try to explain disability-related topics to actually disabled people?

Ablesplaining? I feel like that should be a thing.

[daveagainstthemachine]

disabled clown: oh boy I made it home! As a treat I’ll put on my compression socks and my compression belt and my compression shirt and my compression handkerchief and my compression handkerchief and my compression handkerchief and my compression handkerchief and my

[myalgicencephalomyelitiscfstom]

Skye Polk (@skyepolk) on Threads

I don’t know who needs to hear this but the majority of disabled/ chronically ill people would much rather be working than being in debili

[myalgicencephalomyelitiscfstom]

Just clearing out some old files and came across this for around 25 years ago in case of interest to anyone: "How to Evaluate a CFIDS/FM Treatment".

[body-of-ouches]

Two weeks ago I dislocated my ankle and snapped a few ligaments and hadn't been able to move three of my toes since... Tonight I realised they looked wonky as hell and popped them and guess what? They'd just been dislocated the whole time. I can move them again now. Small mercies 🙏

[dysautonomia]

People with EDS: Classic experience *nods along*

Others: 😱💀

[chronicillnesshumor-deactivated]

[smadeleine42]

One thing my disability has given me is the inability to envision my future. And I imagine this applies to us all in a sense: the future is unknowable and misshapen and messy. But I cannot for the life of me understand what a future might look like for myself when I can barely function some days, rarely leave the house, and have such finite mental and physical energy. I want to plan and prepare and understand what a future might look like, but my body is so changeable and unreliable that I just can’t.

I hope it’s good, but that’s all I can really do.

[dissociacrip]

descriptive transcript:

Haben, a Black woman in her thirties with long dark hair, speaks to the camera, a vibrant blue wall behind her.

Haben: If you're a creator, add transcripts to your videos. I can't see videos, I can't hear videos, but I can read transcripts.

Pins on a Braillenote Touch pop up and down in their Braille cells. Each cell has eight pins that are either positioned up or down depending on the specific Braille letter.

Haben: Braille displays connect to phones and laptops, allowing Braille readers to access the internet this way. Descriptive transcripts should have both the visuals of what's happening on screen and speech and key sounds for the video. Really good descriptive transcripts captivate readers just like the best novels.

The Braille display disappears and the video shows Haben in the same room.

Haben: Once we have widespread accessibility, it'll be easier for deafblind people to share our stories and also participate in conversations. I love learning from lives different from mine and in order for me to do that, I need transcripts. I look forward to reading all your transcripts!

end transcript.

sharing for people who aren't aware this is a thing & can put it into practice, video transcript copied from haben's instagram (please let me know if the format needs to be adjusted in some way 👍🏻)

[i-am-lui]

[myalgicencephalomyelitiscfstom]

[neurotichunter]

I find it wild that people have this weird concept of pain, like...

It's either: Well, a minor inconvenience, I'll take a hot shower and rest for an hour, then it'll be over.

Or: Fuck, this person was in a major car accident and has several broken bones, of course they need urgent care and all the pain meds in the world. (Of course you're then supposed to be back to "minor inconvenience" in like 2.7 days and stop taking pain meds bc they're evil, but okay.)

But... There are stages in-between?? How have you not experienced a headache that knocks you off your feet? How are your period cramps not so severe that you can't stand upright? How can you honestly say to someone who is in really excruciating pain to "take a hot shower and maybe take a walk"? How can you not understand that pain levels are different???

I mean, I'm really happy for you because you obviously haven't experienced pain, but like... Fuck you???

[myalgicencephalomyelitiscfstom]

"Cards2Warriors has a special program called Happy Mail, where they send snail mail cards to those [who are ill] who need encouragement & cheer"  Links:

Cards2Warriors

People who are suffering from chronic pain, illness, and rare disease can sign up to receive cards of encouragement and hope.

Illness Patients | Sign up to receive cards of encouragement

Patients struggling with chronic illness and pain are invited to sign up to receive cards of cheer and encouragement.

Image from Institute for Neuro-Immune Medicine e-bulletin

[dysautonomia]

This is such a beautiful concept!

[myalgicencephalomyelitiscfstom]

[bebsi-cola]

abled bodied people also need to understand that, for physically disabled people resting isn't "free time" that you can use up with assigning us tasks or duties because you're busy. it's an essential part of managing disability and some of us have a hard limit that we're avoiding by having days where we do nothing.

[fishing-lesbian-princess]

Well obviously I can’t have chronic fatigue, that’s a real problem for real disabled people that’s diagnosed by doctors probably. Clearly I just have some sort of perpetual exhaustion issue, that is also almost certainly my fault somehow

[fishing-lesbian-princess]

Should I be concerned with how this got so many notes in such a short period of time? Are we okay?

[yournewfriendshouse]

idk if this helps, but ‘chronic fatigue’ is a fairly broad symptom that comes with a great many illnesses, including burn out. it’s an immune respose that is your body’s way to get you to stop doing things and stay in bed.

‘chronic fatigue syndrome/me’ is the diagnosable condition that specifically involves a symptom called post exertional malaise that sets it apart from ‘just’ being tired.*

if every time you exert yourself you take four or six times as long as you should to recover, you probably have cfs/me.

if you have an overwhelming fatigue and flu like symptoms, but recovery time from your exertion isn’t as extreme, then you probably have something else going on, but the fatigue symptoms are still a significant thing that should not be ignored. it isn’t normal to feel tired all of the time.

either way, rest is very important and trying to dismiss it as insignificant isn’t going to help anybody but the man, so tell your brain to fuck off. everyone needs rest, including the most healthy people you know. and if you’re tired all the time, you definitely need to rest.

*not that it’s easy to get diagnosed; it’s famously difficult, so dismissing a condition like this based on not being diagnosed isn’t helpful

[thedandelionresistance]

This! Chronic fatigue syndrome is kind of a misnomer, and "myalgic encephalomyelitis" is a huge mouthful. I've seen some community renaming suggestions focusing on post-exertional malaise as a primary symptom, but none of them have caught on.

Also, if a doctor tells you that "exercise" can help either, RUN (if you can. I'm being a bit hypocritical bc my doc says safe levels of exertion can help but has never once forced it on me and she's the only person in the area who has ever actually listened to me and provided the care I need).

"Graded exercise therapy" is an outdated treatment modality for chronic fatigue syndrome that has been proven to make people significantly, sometimes permanently worse. I don't mean to fearmonger, but severe chronic fatigue syndrome has been likened to late stage AIDS and terminal cancer in terms of how it impacts quality of life and health prognosis. If you have a mild case, you MAY be able to find a small area below the unsafe exertion threshold which doesn't make you worse, but outside of extenuating circumstances, it's rarely worth the risk.

It's best to take breaks whenever needed, rest, use mobility aids, and generally prioritize avoiding flare-ups and triggering post-exertional malaise.

[disabled-bug]

disabled people when their disability disables them

[rainydayscribbling]

[Image ID: The shocked pikachu meme. End image ID.]

[dysautonomia]

It‘s funny because it‘s true!

[sunnysatyr]

Hey, if you have half a minute and care about the LGTBQIA+ community in the EU, I'd suggest you take a look at this initiative to ban conversion therapies in the EU.

1 million people are required to sign, but there's barely 100k. The form takes less than a minute, it only requires your ID, name and surname.

Please, help spread the initiative so that it can reach the goal ASAP!

[carby]

Initiative detail | European Citizens' Initiative

Get to work, my children 🇪🇺🏳️‍🌈 if you're not an EU citizen and can't sign, at least reblog