#the ehlers danlos life

[s0fter-sin]

something people just don’t think about is how often chronically ill and disabled people just don’t have access to good food. not healthy food, good food; well made, tasty meals that don’t come from a jar or a freezer. how many of us are housebound or can’t drive? delivery services only offer within certain distances, if you live outside a city they aren’t an option. many people don’t have the energy or ability to cook for themselves if they have the skill to begin with. many certainly don’t have the ability to learn how. it’s something that goes completely unnoticed, just the opportunity to have a good meal and how much that wears you down

[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.

[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]

[gigas-critters]

Hey I just want to shout out to my fellow disabled and neurodivergent people with pets.

Every disability makes it hard in a different way. You're doing your best and your best is better than you think.

People with disabilities deserve companionship, and pets deserve good homes.

Your pet care might look different than other people's. Sometimes it will be a struggle. You don't need to carry shame about that.

(P.S.- Fellow disabled/neurodivergent people I'd love to see your pets and service animals if you'd like to share!)

[thelupuslady]

[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.

[chronicillnessfromateensmind]

saw this and thought i’d share

*picture not mine*

[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.

[salt-baby]

at some point in disability you stop wanting to "get better" and this is just really hard for able bodied people to understand for some reason

[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.

[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]

Brain fog 🧠

[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