#Ehlers Danlos Syndrome

[tehsacredeggo]

Me when I look at my symptom tracker trends and my average total symptom amount/severity has gone up 200% in the last week (send morphine)

[currentlyfreebleeding]

having chronic pain is like sometimes i’m dissociating from every feeling in my body because i have to ignore my limbs to cope and sometimes im so hyperaware that i can tell the exact amount of degrees my shoulder is hyperextended

[truly-a-snitch]

forgot 2 update yall but i finally got a cane !!! still in the process of decorating it w/ my partner but look at her !!

heres to hoping i get more mobility aids in the future :)

[marauderscorrner]

Able bodied people seem to be under the assumption that if they do everything right that they’re immune to developing a chronic condition

That’s not how it works.

I can’t count the amount of times I’ve tried to explain to people that their health isn’t a sure thing, one day you can wake up sick and just never get better….

[underworld-cows]

It's always "he'll get through this, he always does."

But jumping over hurdles and sticking the landing isn't the same as having feet safely rooted to the ground the whole time.

When I jump hurdles, the moments in the air are very real to me. There will come a day when my feet fail to catch me and I can't get up. That threat is real to me at every hurdle, even when it's not for you, since all you've ever seen of me is sticking the landing or picking myself up when I do fall.

You feel assured I'll make it, because I always have, but don't mistake that for safety or security. For me, the fall is real.

[mothlagoon]

How many hot water bottles until I’m better? The answer is 0 because I have bendy bones disease ( #ehlersdanlossyndrome ) and it’s never going to go away

I don’t think I’ve ever officially said it because I’ve been waiting for the day that it goes away and I don’t have to think about it anymore but there it is again, another flare up because I didn’t use my aids, I caught a cold, a slight stress, stood for slightly too long or I tried doing something ridiculous like trying to wash the dishes.

Just leave me to steam

Bye!

[thebibliosphere]

In the never-ending quest to alleviate my migraines, I bought a special angled pillow that lets you sleep on your side while your arm just kind of hangs through a whole in the middle. I did this because I’m a left-sided sleeper, always have been.

Until my neck subluxated and now I can’t sleep on that side without compressing some vital nerves and blood arteries. I also can’t sleep on my back right now because the pressure compresses my occipital nerve. Basically sleeping has been a nightmare recently, but that’s not the point of this post.

The point was I brought this up in physical therapy to talk about how great this pillow is because I can now sleep on my right side without the stupid thing going numb or waking me up because it hurts. And my PT was like wow, great! How did you sleep on your left side for so long without it being an issue?

And I said, oh that’s easy. I just tuck that shoulder out of the way.

And she said, ...what?

And I said, yeah, I just tuck it out the way. Not like my right shoulder. That one doesn’t move as well. It just hurts, I think there’s something wrong with it.

And my physical therapist asked me to demonstrate what I mean when I say I ‘tuck my shoulder out of the way,’ and haha, you’re never going to believe this, turns out I’ve just been casually pulling my left shoulder out of the socket for, oh, let’s see, 30 years? And then napping on it like hmmnm yess comfy.

Anyway. I looked up from my demonstration and my physical therapist was making this face:

[talkethtothehandeth]

Wild concept that shouldn’t be wild and the coldest take ever: disabled adults are *adults* and not just children trapped in adult bodies

Disabled adults have sex

Disabled adults do drugs

Disabled adults curse

Disabled adults get piercings and tattoos

Disabled adults can make adult decisions and act and behave like adults because we are adults

It’s just so weird for people to constantly infantilize me all because of my mobility aids when I’m not a child!!!

[haunted-em0]

Lol real

[chronicallydragons]

anyone else ever wish they could lie down harder? Like, I'm already horizontal, but I need more horizontal. I need to be absorbed by the floor. I think that would fix me

[teacupbug]

My controversial opinion is that I think chronically ill people should be able to fight one doctor a year

[hellyeahsickaf]

I found an extremely dope disability survival guide for those who are homebound, bedbound, in need of disability accommodations, or would otherwise like resources for how to manage your life as a disabled person. (Link is safe)

It has some great articles and resources and while written by people with ME/CFS, it keeps all disabilities in mind. A lot of it is specific to the USA but even if you're from somewhere else, there are many guides that can still help you. Some really good ones are:

How to live a great disabled life- A guide full of resources to make your life easier and probably the best place to start (including links to some of the below resources). Everything from applying for good quality affordable housing to getting free transportation, affordable medication, how to get enough food stamps, how to get a free phone that doesn't suck, how to find housemates and caregivers, how to be homebound, support groups and Facebook pages (including for specific illnesses), how to help with social change from home, and so many more.

Turning a "no" into a "yes"- A guide on what to say when denied for disability aid/accommodations of many types, particularly over the phone. "Never take no for an answer over the phone. If you have not been turned down in writing, you have not been turned down. Period."

How to be poor in America- A very expansive and helpful guide including things from a directory to find your nearest food bank to resources for getting free home modifications, how to get cheap or free eye and dental care, extremely cheap internet, and financial assistance with vet bills

How to be homebound- This is pretty helpful even if you're not homebound. It includes guides on how to save spoons, getting free and low cost transportation, disability resources in your area, home meals, how to have fun/keep busy while in bed, and a severe bedbound activity master list which includes a link to an audio version of the list on Soundcloud

Master List of Disability Accommodation Letters For Housing- Guides on how to request accommodations and housing as well as your rights, laws, and prewritten sample letters to help you get whatever you need. Includes information on how to request additional bedrooms, stop evictions, request meetings via phone, mail, and email if you can't in person, what you can do if a request is denied, and many other helpful guides

Special Laws to Help Domestic Violence Survivors (Vouchers & Low Income Housing)- Protections, laws, and housing rights for survivors of DV (any gender), and how to get support and protection under the VAWA laws to help you and/or loved ones receive housing and assistance

Dealing With Debt & Disability- Information to assist with debt including student loans, medical debt, how to deal with debt collectors as well as an article with a step by step guide that helped the author cut her overwhelming medical bills by 80%!

There are so many more articles, guides, and tools here that have helped a lot of people. And there are a lot of rights, resources, and protections that people don't know they have and guides that can help you manage your life as a disabled person regardless of income, energy levels, and other factors.

Please boost!

[sukisauced]

If Violet doesn’t have EDS…

Xaden: Did it hurt?

Violet: -without hesitation- Yes

Xaden: I mean when you fell from heaven-

Violet: No Xaden, it all hurts.

Violet: My bones break on a weekly basis

Violet: My shoulders and ankles dislocate

Xaden: …

[zombiezinmydreams]

[janeacular]

can they invent a mobility aid that helps with the joint pain & also does NOT cause different joint pain in a different area from use