#generalized hypermobility

[consider-your-potatoes-mashed]

I just want to know what’s wrong with my body. Why is it so hard to get that? I just want to have answers. I just Want to live life with appropriate treatment.

[vampiresconce]

for @bsd-disability-week-2024

prompts: hypermobility

dazai with hEDS is something so important to me actually because before i got actual braces for my hands i literally looked like him

[mischa-leper]

🌀 Intro post 🌀

🪲Hello! You can call me antlers, Mischa, jonah, Toshek, or Moth.🪲

My pronouns are He/They 🌀 I’m a transmasc demiboy 🌀

I have adhd, gad, dysthymia, and have recently been diagnosed with hyper mobile spectrum disorder (:

👁️Interests👁️

The Magnus archives, Creepypastas, NBC Hannibal, activism, Zelda, Supernatural, alternative stuff, poetry, Marble Hornets,and much more :3 I’m a big research nerd 0-0

🪲interact if you:

Are a therian,would be considered a “weird queer”,love crafts,love internet horror and spooky stuff,use “creepy” xenogenders,love talking about NBC Hannibal,love yaelokre,like analog horror and ARGs,love storytelling/folklore,are a cryptid,are pagan,are dealing with trauma or mental illness,and in general if you are a neurodivergent queer <3

🪰DNI:

Maps/pedos,pro Israel,TERFs,sex blogs,racists,ableist,queerphobic,or generally ppl who are assholes for the wrong reasons :3

[snakegentleman]

Hypermobile/hEDS people are being failed so hard by the medical system. I am doing an online program* right now for EDS treatment, and in one of the lessons, the doctor said that it takes people an average of 14 years to be diagnosed, and for a good chuck it can be upwards of 20-30 years, especially if you start seeking it out as an adult woman specifically.

It becomes this collective traumatizing experience that makes seeking treatment after getting diagnosed even harder. Most people average 8 PTs before they find someone who will actually be able to work with them effectively. Personally, I can't even watch these lessons w/o crying because they are actually understanding the nuances of my condition and why regular PT and life is difficult w/o judgement.

*check out the eds clinic- you don't have to be diagnosed, and they take HSA (it is expensive though)

[asofspades]

So I have an exam on Saturday, and my mother usually goes to the supermarket to buy stuff for the week on Fridays, I have to study and I genuinely can't focus if I interrupt my routine aka I go out and then come back home, and my siblings bday (yes, all 3 of them share a bday, even though only 2 of them are twins, my brother is 15 years older than them) is close so I wanted to go look up some stuff for my brother (I'm making some keychains for my sisters already), so I was thinking of picking up my sisters at 5pm which is when they finish school, dropping them at home and leaving for the shopping centre and while I was there I might as well get SxS generations, however my mother has decided I might as well accompany her to which I pointed out since my elbow is fucked I can't really help her with the bags, apparently she just wants me to come as company for the car ride since it makes her a bit anxious and I can stay in the car until the game store opens studying.

You might be wondering where the issue here is, well my mother has some sort of issue with me spending my own money, which sucks because when my brother was my age the still payed for all his stuff hobbies included, meanwhile I'm over here having to buy even my own bday presents, and I don't need her on my ass over me buying a 49€ videogame that I'm buying with my grandparents Xmas money, hopefully she'll still be buying at the supermarket while I'm at the store and I can hide the game in my big jacket pocket, and I just want to get my brother a cool Pokémon figurine or maybe a cool case for his switch since he's always borrowing mine when he has to travel, I'm also making him a keychain but since he's got me really cool Xmas presents and a giant Kirby plush for my bday (granted he gave it to me almost a whole month later but a gift is a gift) I wanted to reciprocate.

I just wanted to complain.

On the other hand there's some cool news, I found some tutorials on how to tape my elbow to avoid strain from hyperextension which is helping with the pain I had, and thanks to that I also found a tutorial on how to wrap hypermobile wrists and thumbs so that you reduce the strain when you draw/write/do anything that requires fine motor skills, and it's been a huge relief for me since my hand usually starts cramping half an hour into drawing or when I've been holding a book or a handheld console/VG controller for a while.

[duality-disability]

Developments in hereditary factors for our medical shit:

Our bio mother, adoptive mother (bio grandmother), and older sister (bio aunt). All have hypermobility. And appearently dislocate the ball joints of their hips regularly

Like. They dislocate shit enough to bond over the pain of the experience and how often it happens. And the struggles of putting the joint back into place.

Yall

[batmanego]

i officially have a diagnosis!!!! :DDDD

[marmotsomsierost]

Taking bets on whether the podiatrist looks at my feet and goes 'what the fuck, bro, get out of my office' when i complain about the range of motion loss because so far every md or pt has gone 'what, it's fine, that's normal' like okay. Sure. It doesn't bother me walking or on stairs but i can't stay on tiptoes for any length of time because my right foot is nice and stable and stacked in line and my left foot can't get there. I used to be able to force it into position and now i can't even do that. It's not normal *for me* and i don't like it.

And if the answer is hey you're 40 sucks to suck then i'll be sad about it and do what i can to at least maintain what i still have, but if the answer is something that might have been able to be addressed years ago when i started having problems i'm gonna be mad about it.

[ofcowardiceandkings]

sent email about helf updates to work HR, hopefully shit goes alright

[mewos-laptop]

Hypermobile arms mood rn: one of my shoulders is dropping out of its socket more than the other and I do not like how unequal my body feels rn !!!!

It's probably from the sublocation that happened last summer now that I think abt it

Here's to me sublocating my left arm this pride to that way my body is equally droopy /silly

[consider-your-potatoes-mashed]

Pretty sure I subluxed my hip in my sleep last night so we’re having a “fun” (not really) time out here

[dabeth-is-dead]

Question mainly for autistics but open to all:

[ratcandy]

only a few hours into that pencil holding poll and I have learned some fascinating things such as

Apparently everyone was taught something different as to what the correct method is, which is crazy

Index grip seems show up with us “double-jointed”/hypermobile folk a bit and I’m wondering why that is

Holding a pencil totally wrong was not nearly as much of a shared experience as I thought it’d be fnrNFKDNFJG. At least so far. Wym the majority can hold a pencil just fine. Unbelievably unfair

[autisticlee]

having some sort of chronic pain and tiredness issue and joint problems and whatnot but not knowing exactly what the problem is is really good at leading you feeling like you're faking it or making a big deal out of nothing or making it up. especially if there's a good day where it's not as bad and you can walk straight without limping for the first time in a year. but then you can wake up the next day and can barely walk and wonder why you can't just walk normal. it's hard to not guilt trip yourself into dealing with pain by trying to ignore it and force yourself to walk "normal" all the time

[cosmicdisastr]

don't you just love seeing 1 tiktok about something that can be wrong with your body that you resonate with which leads you down a rabbit hole of research and diagnosing yourself with a new thing that explains everything you've been dealing with but didn't have the words for but you don't want to bring up official diagnoses with your doctor bc you either can't afford the testing or you're afraid you wouldn't be believed and/or told you're wrong even though you KNOW something is wrong w you but dont have the mental energy to pursue it and so you just walk around with a bunch of shit in your head about things you may or may not have but cant/wont do anything about and scream

[queercremation]

"I swear, only people with fibro or hEDS understand how hard it is to get into bed and get your 600 pillows just right" - my mom

Honestly, yeah