Hypermobile Eds - Blog Posts

No way I was ever a competitive gymnast

Anyone else sometimes forget the level of disabled they are because it's so normal to yourself?

Sometimes i'll remember something i used to do, something i was able to do and that i definitely wasn't thinking about and i'll have trouble believing it. I know i was walking up and down stairs multiple times a day everyday and oftentimes running them but. It just doesn't true. Like, what do you mean i used to walk a kilometre to school and back every day when i was only half my size?? That can't possibly be right? But somehow it is! I used to jump on those garden trampolines for hours on end. How???

How'd I dislocate my hip by sleeping 😭

Anybody else with ehlers danlos syndrome have sway back?

Idk how to fix it, but I was wondering if anyone else does this

sometimes being chronically ill is laying on the floor in pain while the cat tries his very best to help

Yeah... text to speech has kinda saved my life in that area

My hands hurt a lot too. So like. Limited ability to be on my phone and type or to even play games. Thanks ehlers danlos and fucked up joints.

The sarcasm here is fucking hilarious 💀 whenever I inevitably end up using mobility aids, imma just tell them my doctor told me to, bcs she did. Even if your doctor denies you a mobility aid, people get uncomfortable if you just say a doctor made you, so you could always just make stuff up.

You shouldn't get a wheelchair, walker, cane, shower chair, or any kind of assistive technology mobility aid because then you might become dependent on them. Just like how you also shouldn't get glasses if you have bad eyesight because then you might become dependent on those.

For instance, if you end up stuck using corrective eyewear, you could actually lose your ability to tell what things are even when they are extremely blurry! You need to get used to having migraines from seeing unclearly because if you wear glasses all the time, you are basically giving up!! You don't need to see things coming at you from far away! You just need to get good at dodging, and if you can't, then you have no one to blame but yourself!!

For example, I read a really heart-worming article recently about a girl who was stuck using glasses - just absolutely, tragically trapped in her eyewear from dawn to dusk, even though she was good and never ever complained; and I heard she trained herself to discern the blurry faces of her loved ones with 60% accuracy! - she was even able to walk down the aisle at her wedding WITHOUT forcing the discomfort of seeing a woman in glasses on all her guests!!

Sure, she had to give her vows with a splitting headache, and she couldn't see her husband's expression when he said "I do," but overall, SO inspi-ration-al!!! So up-lifting!!

(She didn't even have to use a seeing eye cane, which would have been the worst-case scenario, obviously, because she worked hard to make sure she looked LESS disabled, not MORE disabled!!! Everyone knows blind people exist solely to be a cautionary tale to sighted people!!)

Also, did you know some people get glasses when they only need them a little bit?? How selfish of them! Sure, there's not a shortage, and an increase in demand would result in overall increased accessibility to glasses--but emotionally it's like taking glasses away from someone who needs them more! After all, if everyone who needed glasses got them, then...... um...... more people would have glasses! Which is probably bad!!!!

I also had a friend who was trapped in glasses who saved up all her money for laser eye surgery, and I don't know why everyone doesn't just do that! Sure, some doctors say some people don't "qualify" and it "won't help" those people, but that's why you can't give up!! You don't want to be one of those people!

After all, what's the worse thing that could happen with an unnecessary laser surgery to the face that comes with crippling debt??? It's worth the risk to gain your FREEDOM back, and I'm so proud of my friend!!

Tragically, she did die later that year while driving Uber and squinting at street signs, but at least now I know my friend is finally free from the shackles of her terrible eyesight. #ripAshley #rippedAshley #justripit 😌😌😌❤😇😇😇

And that's why you shouldn't get used to using a mobility aid!! Because, like glasses, they are inherently embarrassing to be seen with; and - like glasses - it is more noble to silently suffer than to depend on unnatural technologies that force you to rely on them!!! (Besides, everyone else will be SO much more comfortable if you look normal!)

I hope you learned something today. 💖

Random vent:

I legitimately do not know what is going to happen to me in the future. All I want is to be a firefighter, but two days into emt school and I'm already having a flare up. We went to visit the fire station today, and I nearly passed out just from standing still. I was always such an athletic child, and everyone expected that I would kick ass in this field, yet here I am, struggling to stand. I already knew that I would have a very short, painful career, but now I don't know if I can do it at all.

Its Ehlers Danlos Syndrome awarness month and I would like to be LESS aware, please and thank you.

Not my dad having called me a slur used for physically disabled people anytime I was injured or in pain during my childhood, long before I was diagnosed with my disability. I didn’t know it was a slur at the time.

Not me assuming that after I actually was diagnosed with a physical disability that he would stop calling me that out off respect or at least ask me if I mind. No one really cares about a child understanding words that are meant to be used as an insult because if they don’t teach them they’re an insult they think they can get away with it. That’s not good.

But I was having a bad pain day and my dad once again called me the G word, which not everyone knows.

He didn’t say it in front of anyone other than me and my mom, and he didn’t say it in an insulting way, however he has a tendency to say rude and cruel things with no intention of them being either (or with the intent but not caring)

I don’t actually have issues with the word itself on reference to me. Gimp(y) and Cripple aren’t words that I am afraid to use to describe me but I don’t need my father to assume I’m okay with using it as an adjective.

I wonder how he’d react to me referring to him as it? Another chronic pain haver who happens to use a cane on occasion.

Hmm

Hey y’all!

I’m about to make a website for an organization I’m creating to help those with hidden/invisible disabilities and illnesses.

I want to be able to make this website accessible for people with all types of conditions and wanted to reach out on here to get any suggestions from people with those types of conditions.

I also created an Instagram for the organization but it’s still in the very early stages so I won’t be sharing yet…

Let me know if you have any suggestions or questions!

So recently I’ve bee considering applying for a balance and mobility support/service dog, but I want a bit more information from people who actually have them and aren’t paid to give a good review

(It’s also alarmingly difficult to find organizations that train balance and mobility service dogs)

I understand the financial drain and the time you need to put in to make the team function properly. I understand that a service dog is considered a medical device and not a pet, but they still need love and support and breaks like all loving things should. I understand that given my allergies a poodle would be the best option but I could also push for a less common breed.

Does anyone have an info, tips or blogs to recommend?

I really want to be independent once I move out and I really think a balance and mobility support dog would be helpful.

So I have a question for others with diagnosed hypermobile ehlers danlos syndrome

When I was diagnosed, the doctor said to me that there are no pain meds that can help with my pain that he is willing to give me because the only ones strong enough to work are highly addictive or can make you “high as a kite” in his words.

Has anyone else been told this? I mean it’s true low level pain meds don’t work on my joint pain but still, is there anything?

Just remembering the times I’ve actively been falling asleep in front of a doctor due to my chronic fatigue but then they still don’t do anything but tell me I need more sleep

Which isn’t unreasonable but I am a student. An AP GT student who falls asleep during class as well so I don’t get the notes or miss the lesson so I have to come in after school to get notes (or dig around the online classroom for the teachers that actually post their notes) and then have to teach myself the lesson.

Then I have to do the homework which is difficult for me to focus on (we think it’s undiagnosed adhd given other symptoms) and trying to complete the assignment takes a minimum of an hour. Give or take given exhaustion and falling asleep reading the questions, pain in my wrist, fingers, hands, etc, or having to do other things.

Then multiple by the four educational classes I’m in (thank god French doesn’t have homework)

I get as much sleep as I can

All this to say, I’m glad it’s summer and I’m glad I was finally diagnosed (maybe collegeboard will finally consider accommodating me)

This is kinda weird but I’m trying to figure out how weird my ankles actually are. I have over-pronated ankles but high arches, which apparently is strange because flat feet cause over-probated ankles and high arches cause under-pronated.

Over-pronated ankles look like ) (

Under-pronated ankles look like ( )

And normal ankles are straight | |

Please reblog if you care to so I can get a larger sample! It would be much appreciated!

Casually remembering when a classmate mentioned something about burning easily in the sun and I said “pale skin gang” and they paused and said “no I’m definitely paler than you” and pulled up their sleeve.

Now I didn’t mean it as a competition, I feel that’s obvious from the statement, but I plopped down my milky, semi translucent arm and stared them down.

“Holy shit, you could be a vampire”

“Pale skin gang, we all burn together”

Mind you, I can see my veins from my shoulder all the way into my hands

But the nurses can never find a vein that works

Damn you rollie veins

My foot has been hurting for the last five days and is making it agonizing to try and do my PT.

Nothing looks wrong, it’s not a joint (I think?)

It doesn’t hurt all the time but if I bend my foot up towards my ankle it hurts or point it.

This is weird

So excited to have a flare up during my EOC exam tomorrow and not being allowed to have any of my diy treatments because the school refuses to accommodate me, so fun!!! /src

But seriously I had a flare up in the middle of my SAT and it caused me to not be able to finish a section due to incoherency and pain. Literally just let me have my salty beverage…..

For those out their with heds that use mobility devices, what device do you use and what was the point that made it a need ? I’m so tired and I’m pain on the daily in either my hips, knees or ankles (and that’s only below the waist)

I’m dependent on my parents for getting care and they are relatively supportive as disability is common in our family but my mom seems reluctant to even discuss the possibility that I may need an aid.

Any advice?

(Also going to the doctor this week to ask about symptoms of pots I’ve been having for years and stomach problems)

So I only got diagnosed last week right? I’ve been in pain for years but I never had a name for it that explained the extreme it would go to.

Well today I was walking around with some of my friends getting ready for the show we are putting on and I open the door for them and right after they walk in my hip shoots pain and I hit the deck, unable to get up because of pain.

I don’t know wtf happened, but my hip has hurt ever since regardless of position, sitting, standing, laying

So the prop department is lending me a cane, but can anyone tell me what could possibly have happened?

Hey can anyone who has heds tell me if binders or corsets help with back pain? I’ve been having horrible back pain more frequently recently and I don’t have a way to ask my doctor for recommendations because I don’t have access to chat with him.

Please I’m in so much pain

[ID: a mock caution sign. The illustration, done in bold black, shows a set of hyper mobile hands stretching the thumb to reach their forearm, and lightning bolts float above the writ. The text on the sign reads “Warning Just because you can bend that way doesn’t mean you should.” /end ID]

Happy EDS awareness month.

A cool thing about connective tissue disorders/arthritis is you hear from your skeleton a lot more

POTS pro tip - if you need to stand up or stay standing and your blood is going to pool in your feet, squeeze all of the muscles in your legs, HARD. It will help keep blood from pooling by forcing your blood vessels to constrict. The Air Force trains their pilots to do it so they don't pass out under high g forces, so it works. If it's not working, try doing it sitting until you feel like you've got the hang of it. If it still doesn't work, at least you tried.