“Just do yoga! Your health care team don’t know what they’re talking about!”

Me after trying yoga:

My whole childhood I was like, “Wow! I’m so flexible, that’s so cool! Too bad I have this completely unrelated chronic pain that’s completely normal or otherwise I would totally join the circus!”

Anyway I think I might have heds

geeses:

Excuse me while I put on my exosuit

Mood- except I can’t find a good quality corset

Anyone know where I can get one?

I thought getting an Ehlers Danlos Syndrome diagnosis would be straightforward because of the Beighton Scale, but boy was I wrong. 

My rheumatologist said that my skin matched the criteria for EDS, but she didn’t think I was hypermobile and didn’t think I had EDS after examining some of my joints. 

A few months later my pulmonologist, who sees a lot of POTS and EDS patients, examined my skin and my joints and said I was hypermobile. He said I probably had EDS and referred me to a geneticist. 

I mentioned my hypermobility to my cardiologist, who also sees a lot of POTS and EDS patients, and he examined me and agreed that I’m hyper mobile. He went on to say, though, that I “don’t want an EDS diagnosis” because the symptoms of EDS are hard to deal with. I wanted to tell him “yeah, I know, because I’m dealing with them” but I kept my mouth shut.

Three doctors shouldn’t have three different opinions about what my diagnosis should be.

We’ll see what the geneticist says in August. 

Me when I get another diagnosis to add to my list

[ID: Gif of a woman, Margaery Tyrell from Game of Thrones, smiling and saying “I must be cursed.”]

“Don’t you think the doctors are probably fed up of seeing you so often?”

[ID: gif of a middle aged man holding a mug saying “They may resent me. I don’t care.”]

When you first start your physiotherapy program

[ID: Gif of Samwell Tarly saying “I’m not cut out for this start of work”]

Most doctors when you ask them what could be causing your symptoms when the blood tests come back as normal

[ID: A gif of a woman, Lucille from Arrested Development saying “I don’t understand the question and I won’t respond to it”]

What it’s like when a flare hits you out of nowhere

[ID: a gif of a man opening his door to find another man there with a bin says “surprise, bitch!” then chucks it in his face so hard he falls down]

“You’re too young to be thisill”

[ID: Gif of a man saying “we can’t all be as blessed as you”]

“Who could have that many conditions”

[ID: Gif of a man smiling slightly shaking his hands]

Doctor: I’ll refer you but he’ll probably not do anything to help ease your symptoms

Me:

[ID: gif of Sandwell Tarly saying ‘he can bloody well try.”]

When someone watches me attempt to get my hip back in place

[ID: gif of a man sat down saying “that was hard to watch.”]

People around me when the presyncope hits me

[ID: a gif of a man in front of a microphone next to two people saying “Just keep drinking. It’ll be over soon”]

“So what do you do all day at home if you don’t work?”

[ID: a gif of a man in a tuxedo in front of a microphone saying “Netflix. Netflix. Netflix.”]

i am currently looking for recommendations for compression socks from people who are AUTISTIC and have H-EDS or HYPERMOBILITY IN GENERAL with CIRCULATION ISSUES

(please only reply and/or reblog with suggestions and/or recommendations. DO NOT just signal boost without offering any info. thank you!)

here are some potentially relevant factors that my influence your suggestions, under the cut so i can freely edit the list if need be:

i need multiple options for different temperatures because my temperature regulation is extremely bad, which contributes to the circulation problems i experience.

i live in canada (this makes warm options especially important).

for autism reasons, i need to limit pilling as much as possible, avoid even slightly itchy textures, and minimize the dreaded red-indents problem.

i wear size 36-37ish (european) shoes and i am thin and bony (my bones are also thin).

i do not sweat much at all, but i do live in an area where it gets very humid in the summer.

i do not have the “extra stretchy skin” symptom, but my skin is fragile and very sensitive to things like chemicals and the aforementioned itchy textures.

i am okay with any length of sock if it works, but my preferredlengths are full tights, knee-high, and ankle socks.

i have no idea what level of compression will be most helpful and do not know how to test that, but i generally prefer to wear fairly snug clothing.

and most importantly (/hj) they need to come in plain solid black, because i simply cannot tolerate anything else. thank you for your understanding on this critically important requirement

(please only reply and/or reblog with suggestions and/or recommendations. DO NOT just signal boost without offering any info. thank you)

“After everything I do for you, taking care of you and trying to help you be better, is it too much to ask for you to be just a LITTLE bit supportive of me?”

- Me, to my joints

i just got a pair of smartcrutches to try and i was wondering if anyone had any advice for using them? my physical therapist showed me how to walk with them, but idk the best way to carry things with them, or what to do with them when i’m sitting. they fall over when i try to lean them on things! i was also wondering if anyone has found a way to attach them to a manual wheelchair. feel free to message, send an ask, or reblog this! thank you in advance!

thesaltyspoonie:

winter is just.

ow ow ow ouch owie oof owww. ow. ouch ouch ouch. oooooooo ow. argh. ouch. oowwwwwwwwww

for the whole time.

remember to register for the dysautonomia international conference if you’re interested! it’s free and they send you all the recordings with captions afterwards. it’s looking like there’s a lot of new exciting info!