#danlos

[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:

[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

[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!!!

[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!

[fatal-blow]

growing up, my mum always told me, whenever i went to the doctors or any sort of health professional, that it was important that i told them that i was hypermobile. she'd done the tests with me (herself being hypermobile and disabled in large part because of it) and though she didn't know the details, she knew that hypermobility was important to have in my health record.

so it was to my great surprise and displeasure that, whenever i told doctors i was hypermobile, it was skipped over. never addressed, never touched on, not even a comment to belie what that meant for me. i myself didn't know the impact hypermobility could have on a person, but my mother had been insistent about that fact. it was important, so why did no one else seem to think so?

i grew up with kids in school who were on the extreme ends of hypermobility. i knew a boy in middle school who could put both feet behind his head. i knew a girl in high school with long, spindly fingers who showed me how far backwards her arm could bend.

both of them had health problems, which became more profound as they aged. i never knew the details, but it stuck out that they were hypermobile, and so was i, and with my own health declining there HAD to be a connection.

common knowledge gives the vague definition of hypermobility as extra stretchy muscles, of being double-jointed. it comes with warnings not to push your hypermobile body into the extremes. don't overextend, you will hurt yourself.

the warnings are warranted. the importance isn't overplayed. these things i knew, but i didn't know why. and without knowing why, they were warnings that i could never truly obey, despite how conservative i became with my movements in a vain attempt to protect what little ability i had left.

hypermobility is NOT stretchy muscles. muscles are supposed to stretch. in fact, it's important to their health (those conservative movements prolly hurt more than helped!). hypermobility affects connectives tissues, and lands under the umbrella of Ehlers-Danlos Sydromes (there are a few) which can range in severity from affecting skin and tendons to affecting blood vessels and organs.

severity is rare, and much easier to catch. this post is for the people who are "a little hypermobile" so that they can understand what makes their body different.

a muscle and its associated tendons are like a hammock. the muscle is the fabric you lie in, stretching to accomodate the load. tendons are the rope that attaches the fabric to the trees, providing a secure anchor for the muscle to operate.

so, what happens when the ropes on the hammock are also stretchy? well, you sit in the hammock and your ass hits the ground.

now imagine that the fabric of the hammock has the ability to clench like a muscle. a normal hammock doesn't need to work that hard to stop ass from meeting ground, because it has sturdy anchors. a hammock with stretchy rope, however, must exert several times more effort, because the more the muscle pulls, the more the tendons stretch.

in short, hypermobility forces your muscles to work harder, because they must first pass the threshold of stretch the tendons are capable of before it can actually do the task it's meant to do. the stretchier the tendons, the harder the muscle needs to clench, the easier it is to overwork.

this info reframed everything i was doing with my body. small tasks of strength required the effort of much larger tasks, and larger tasks ranged from extremely difficult to impossible. holding my arms up so i could work above my head required monumental effort. with an anatomical peculiarity of the feet, i needed to use several muscles in my calves and hips just to stand without losing balance.

so no fucking wonder i crashed and burned in my 20s, when everything i did took all of my strength to accomplish. no wonder i would contort myself out of shape, so flexible that i could anchor myself into extreme poses just to give my muscles a moment of relief, overstretching myself without ever realizing why, and what damage i could be doing.

so, some things to remember:

overextending isn't good for you, but it shouldn't be your biggest concern. instead, be aware of overexertion, both how LONG you are using a muscle without breaks and how HARD you are using it.

small, frequent breaks are your best friend if you need to do something for awhile.

when you take breaks, stretch the muscles you'd been using.

if you need to exert effort to maintain a pose (whether it's sitting, standing, etc) examine whether you need to be clenching those muscles, and why.

actually whenever you are using muscles, try to train yourself to use as few as possible. you can practice by sitting or standing, and relaxing as many muscles as you can before you tip over. finding a sense of balance can make your life so much easier.

become acquainted with what relaxed muscles feel like. chronic tension can distort your perception of this, and result in habitual tension.

so yeah. if you're hypermobile, that's important. don't let a doctor's dismissal make you think otherwise. take care of yourself and know what you are and aren't capable of.

[spookietrex]

[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

[a-sassy-bench]

do able-bodied people not understand that if disabled people call out of work every time they don't feel good that we would call out of work every fucking day?

like honestly. what do you think being disabled means?

[chadepitanga]

there's something so raw and soul crushing about spending your late childhood+teen years suicidal then growing up and actually wanting to live, after an ungodly effort, only to see your health deteriorate because of chronic illness.

[chronically-mars]

I never truly knew the meaning of friendship until I became chronically ill and disabled. When my health declined I had people leaving left and right because I couldn’t keep up with other teenagers. I stopped having people check on me, I stopped getting invited to stuff, stopped being included, until I just got left behind. Now as an adult I found friends who check up on me, make sure whatever we do is accessible to me, always making me feel included, they are my support system.

Check up on your chronically ill and disabled friends, keep including them in stuff even if they have to end up canceling it. Being excluded for something you have no control over is horrible and no one should go through that.

[talkethtothehandeth]

This is a reminder that you can still serve cunt while using a mobility aid, hope that helps

[stellaltumi]

stop villanizing disabled people. stop assuming we're just being lazy. stop assuming we could be trying harder. stop assuming that we'll "feel better" in a few weeks. stop assuming that we have the same energy levels as everyone else. thanks for coming to my ted talk.

[affectionatepanda]

Something I wish abled bodied people would understand is that just because I’m using a mobility aid doesn’t mean I’m “hurt” in that moment necessarily. They’re also preventative measures. Since I’ve began using my aids at work I’ve gotten so many versions of “what happened to you” that I genuinely cannot keep track. Nothing *happened*, sometimes people are just disabled.

[drpedi07]

Ehlers Danlos Syndrome

Ehler Danlos Syndrome (EDS) is a genetic problem where the protein “collagen” (pronounced as coal-aa-gen) is abnormal.

[chronicsymptomsyndrome]

I know its kind of silly to say “don’t feel bad for canceling because of pain, fatigue, etc” because I know guilt is a reflex you can’t easily refrain from. But you can reason with yourself so instead I’ll say this:

Nobody can feel what you’re feeling but you. Nobody knows the severity of what you would be putting yourself through if you were to “tough it out.”

If you do “tough it out,” the purpose for you doing the thing will most likely not be fulfilled anyway. You probably will not be mentally present or engaged. You probably will not have a good time or get much out of it. Etc.

If people really have such a problem with it, thats a huge red flag. Being transparent about your needs and boundaries is a great way to weed people like that out of your life.

If you have any kind of chronic illness or disability, remember that you probably have a very warped judgement of what is “reasonable” to endure in terms of pain, fatigue, burnout, etc.

You didn’t ask for this, you don’t deserve this, there is no reason you should have to bear the weight of it alone. I bet if someone else was in your position, you wouldn’t mind helping accommodate for them?

Low energy days are truly sacred, take them seriously. Please respect your body’s signals. “If you do not choose times to rest, your body will choose for you” or however the saying goes

It is so much pressure to have to deliberate what sacrifices are necessary for proper self care. Give yourself extra credit for having to deal with that stress on top of whatever is putting you in that position in the first place. Thats a lot at once

You are leading by example and showing others that you would never expect them to hurt or overextend themselves for your benefit. Putting yourself first always inspires other to do the same.

Please be proud of yourself for even considering canceling and putting your needs first. That is so strong of you <3