#ehler danlos life

[crimeronan]

i had a dream that there was a genuinely benevolent man who wanted to give away $400,000 no strings attached to someone who truly needed it, and for some reason he considered me in the running, and i was like, "oh, i would have been last year, but i'm not anymore. like i need to be honest with you, i'd LIKE the money but i can't in good conscience take it from someone else. i'm able-bodied now and nearly back to full independence"

and he was like "okay, show me. climb these stairs."

and then he brought me to a staircase made up of about 60 incredibly steep steps. that were so sheer it was like a vertical rock climb.

my right hip was already hurting but i was like "yeah lmao, no problem :)" and started to climb. it became Immediately Apparent that i couldn't put my full weight on my right side, so i carefully hobbled up each step using my left leg and the railings.

halfway up my hip fully gave out.

the guy was like, "okay, okay, stop, i've seen enough. oh my god no. hey. STOP" and i was like "NO, I CAN FUCKING DO IT. I TOLD YOU I CAN DO IT AND I'M GOING TO DO IT." and then i pushed myself up the remaining steps by using my arms and hopping on my good leg.

which was difficult but achievable! i was incredibly proud of myself. i am the hulk. i am buff. i have the arm strength of a god.

sadly no one else was nearly as impressed. at the top there were a couple women who i guess worked with the mysterious benefactor, and they grabbed me and hauled me onto the upper landing like "WHY WOULD YOU FUCKING DO THAT?? WHY DID YOU DO THAT" as i Finally got to sit down.

anyway.

i then woke up with my right leg twisted well over 90 degrees. and pinned beneath me.

because my hip had subluxed worse in my sleep than it has in probably, like.... Over A Year.

so.

this is what two weeks without PT does to a motherfucker.

[chronically-evie]

my mom keeps trying to get me to go to the ER when im having a flare up and i have no idea what to tell her.

because ive BEEN to the ER before. you wanna know what they did? while i was sweating, shaking, and sobbing, curled in a ball of pain?

they asked me if i was on my period. when i told them no, they asked me if i was pregnant.

when i told them no, because i wasn't sexually active, they forcibly tested me anyways, and then when it came back negative said, "well maybe you should just take a few deep breaths", gave me liquid ibuprofen, and sent me home.

disabled people, in this particular situation disabled afabs, are never fucking listened to.

the ER staff literally LAUGHED at me multiple times. they pointed at me when i was having one of the worst episodes of my life and snickered.

so no, i do not want to go to the fucking ER. my heating pad, ice packs, and nausea meds are going to help me more than anything a hospital could do.

[thelupuslady]

[800-dick-pics]

Help Me Get a Service Dog to Live a Better Life!!!

I have been waiting for years for and an opportunity like what I have just been given. I have been researching service dogs extensively for years, and now I have an opportunity to get a prospect for one…… but in 2 WEEKS! I need help funding the cost of the puppy as well as the flight ($2500 approx) to get across the country. While this has been on short notice please know that this has not been a rash impulse choice, this all has been in the making for sometime now, and there is already a dog picked out that is perfect for my needs. My community is ready and willing to support me through this process of training a service dog and think it could be one of the best things for my health.

Having a service dog would allow me to work a traditional job again, would allow me to have more freedom and autonomy, this is going to change my life in a very impactful way. I want to be able to leave my home without fear of passing out and falling, I want to be able to work again, I want to be able to get out and be a human being again, to finally have the ability to do things by and for myself!\ For the first time in a while I have hope for my future, hope that my quality of life can improve, hope to feel like me again.

Please if you can share and donate! This is vital to my health, my quality of life and future.

$2,600 GOAL!!!!!!!

CA: $sleepyhen

VN: wildwotko

Dm for Paypl

[gracethyomen]

Happy First of May!!

Hello! May is EDS (Ehlers Danlos Syndrome) awareness month! As a person with suspected EDS and with chronic symptoms, this is a very important topic to me. EDS is hard to diagnose, and many patients fly under the radar of healthcare professionals which can cause them to suffer lack of treatment and forces them to live with their painful symptoms.

More Information about EDS and associated variations has been attached below and the infographs were originally found on an instagram account that I follow at the username the_chronic_chronicles

[murruspins]

[thisdreamisover]

"I don't know if I am disabled enough to use a mobility aid, but it has helped me a lot..." Sweetie, if it's helping you it's because you need it, completely able-bodied people don't need mobility aids to live to the fullest. If you can, use these aids, you deserve it.

[tucknroll]

only i am allowed to be upset about being disabled. not the people who refused to believe i was. not the people who refused to accommodate me. not the people who chose to forget to make it easier for themselves. not the people who got rid of accommodations because they were getting in their way. not them, me.

[melodymorningdew]

If I hear someone tell an autistic person to read the room one more time... 🙃

Not everyone has an iOS brain some of us gotta deal with a Motorola for a prefrontal cortex.

CANT DOWNLOAD YOUR STUPID BODY LANGUAGE SOFTWARE. PLAYSTORE DONT HAVE ITalright I've taken the metaphor too far.

[thesecretlifeofmecfs]

ChronicVerse

[potsiepumpkin]

I love to seeing my friends prosper but I wish with all my heart I could join them.

[violet-phoenix-nebula]

Reblog if the word psychosomatic or synonyms of it trigger instant, burning rage.

psy·cho·so·mat·ic adjective (of a physical illness or other condition) caused or aggravated by a mental factor such as internal conflict or stress.

[Basically, the fancy word for "it's all in your head"]

[tumble-tv]

Yet another camp story:

I met 5 other campers with EDS, which is awesome, but the way we started talking was hilarious. They took one look at the way I walk with my crutches, my knees, my hands, and how I pushed my wheelchair and crossed the room, came up to me and said "You have EDS, don't you."

LIKE THANK YOU YES THERES A VERY HIGH PROBABILITY BUT DOCTORS FUCKING SUCK

[thelupuslady]

[800-dick-pics]

Help Me Get New Mobility Aids!!!

Happy Disability Pride Month! I initially wasnt going to make a post to try to get new mobility aids/tools, but I really need them, so what the hell.

I am a multiply disabled Black lesbian and I have been without proper supportive mobility since the start of the pandemic. I had many of my things broken or thrown away during this time period, and I thought I could go without but its been so long and I really cant anymore.

I need smart/ergonomic forearm crutches because regular forearm crutches wreck my fragile hypermobile wrists, I need braces for both legs and ankles, a shower bench and detachable showerhead. All of this combined is a bit over $550.

I REALLY need this, esp the crutches! My mobility and bodily autonomy would be GREATLY increased If I was able to get these items. I

CA: $sleepyhen

VN: wildwotko

Dm for P@ypal

TLDR?: Disabled Black Lesbian needs new mobility aids for increased mobility and autonomy.

[etherealspacejelly]

ok really hoping someone can help me out with this because its a bit weird. first of all, important data:

ok heres the deal. for most of my life, every time i have walked or stood up for more than 20-30 minutes, my feet hurt. not uncomfortable, PAINFUL. like pressing on a bruise painful. if i walk/stand for more than 3-4 hours its a SHARP pain like blisters, except there are no blisters and none form later (unless my shoes were rubbing or something, which if im wearing my usual trainers they dont)

I always thought this was normal and that everyone just grits their teeth through pain to do fun stuff like go to a zoo or a museum or a theme park. but i told my dad about it recently after a day out and he was like "what the fuck go to a doctor thats not normal my feet only feel uncomfortable right now they dont Hurt"

so i want to know how common this is. does anyone else get this? and what might be causing it?

information that may or may not be significant, just including it in case any of it is relevant to a condition i havent heard of:

i am diagnosed with adhd and working on an autism diagnosis

i am hypermobile (not diagnosed yet but. my neck and arms definitely hyper extend, and ive been able to touch the floor without bending my knees my whole life without stretching regularly, so i know i am)

my hands swell up in extreme temperatures. expecially if im exercising at the same time. i used to have to get other people to do up my shirt buttons after PE in school because i couldnt bend my fingers enough to do them myself

i bruise very easily. my brother likes to poke and prod me to get on my nerves and if he pokes just a little too hard, i bruise. also scratching my leg through my trousers causes me to bruise

i get friction pains on my hands if im doing something like carrying a heavy bag with a cloth handle or opening a tight jar

i have very dry skin and suffered from excema as a child/teenager

i have been looking into EDS and i think i might have hEDS, so idk if any of this is related to that. my dad also thought the foot pain might be an autism sensory issues thing?

if anyone can relate to any of this please tell me about your experiences and what causes it because that would be super helpful

thank you