xxtowardsthesunxx

[xxtowardsthesunxx]

Migraines are literally the stupidest thing in human evolution. "Oh no, we're experiencing too much Thing! Better send a rail spike through the skull and blind ourselves about it" like c'mon, man

[xxtowardsthesunxx]

Some people don’t want to hear this but sometimes accessibility is not sustainable or eco-friendly. Disabled people sometimes need straws, or pre-made meals in plastic containers, or single-use items. Just because you can work with your foods in their least processed and packaged form doesn’t mean everyone else can.

[xxtowardsthesunxx]

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:

[xxtowardsthesunxx]

Wait what's a buildings fire evacuation plan if you aren't supposed to use the elevator to get down

[xxtowardsthesunxx]

[xxtowardsthesunxx]

I'm glad to help fellow spoonies. this community is a valuable thing. I wish you luck. 🤍

Did Not know my arm was out of place until my shoulder popped back in. Anyways, EDS people, y’all got tips on low impact exercises to keep this bitch in place???? Like I know you’re supposed to build muscle but how do I do that without fucking it up worse?

[xxtowardsthesunxx]

This is a friendly reminder that none disabled people often do benefit from the same accommodations disabled people benefit from.

[xxtowardsthesunxx]

braces do damage to your body

canes do damage to your body

crutches do damage to your body

rollators do damage to your body

wheelchairs do damage to your body

before you choose to use a mobility aid you need to weigh the pros and cons of using one. there are drawbacks to every single mobility aid. there is no such thing as a harmless mobility aid. mobility aids are not the right choice for everyone and it's important that people emphasize that when suggesting that people try them. mobility aids can permanently damage your joints and it's important that people emphasize that when suggesting them.

mobility aids need to be an informed decision.

so many people have permanent damage to their bodies that they regret because people online told them to try a mobility aid and that there were no downsides. there are downsides.

a mobility aid is only the right choice when the benefits outweigh the drawbacks. it takes information for someone to know whether they would benefit enough from a mobility aid to make it worth it. when you tell someone that there are no problems with mobility aids, that doctors are all lying about the damage they do, you deny people information. doctors can be wrong and can deny people mobility aids incorrectly but there's truth in the fact that they damage joints, change gaits, and cause muscle atrophy among other problems.

and on that note doctor/PT/OT guidance is important when it's available. using mobility aids that have been sized incorrectly, even for a short time, can cause enough damage that mobility aids are no longer an option for that person. using mobility aids incorrectly, even for a short time, can cause enough damage that mobility aids are no longer an option for that person. failing to tell people that they need to learn how to use and size their mobility aid correctly (preferably with a doctor/PT/OT's help) causes real harm to people.

give people information when you suggest mobility aids to them. people listen to your suggestions without researching and it causes harm.

[xxtowardsthesunxx]

painting made easier

[xxtowardsthesunxx]

the US Department of Transportation is now accepting comments on new rules for US airlines regarding disabled passengers!

"The proposed rule would require that airlines meet rigorous standards for accommodating passengers with disabilities safely and with dignity. The proposal will set new standards for prompt, safe, and dignified assistance, mandate enhanced training for airline employees and contractors who physically assist passengers with disabilities and handle passengers’ wheelchairs and specify actions that airlines must take to protect passengers when a wheelchair is damaged during transport. Notably, the proposed rule also would make it easier for DOT to hold airlines accountable when they damage or delay the return of a wheelchair by making it an automatic violation of the Air Carrier Access Act (ACAA) to mishandle wheelchairs."

you can read the complete proposal here, and leave a comment here! the comments will be open for 25 days as of today, May 18th. if you're American, even if you aren't disabled, please leave a comment, and if not please share this around!

[xxtowardsthesunxx]

I think the reason a lot of leftists struggle with disability justice is that they haven't moved past the concept that discrimination isn't bad because it's objectively "wrong." yes, sexists are objectively wrong when they try to claim women are dumber than men. yes, antisemites are objectively wrong that jewish people are inherently greedy and run the state. yes, racists are wrong when they try to claim that white people are the superior race. and so on.

but then with disabled people, there are a lot of objective truths to the discrimination we face. people with IDs/LDs do fall behind and struggle with certain concepts. physically disabled people are often weaker and less capable of performing demanding tasks than able bodied people. many of us with mental illnesses are more reckless and less responsible. a lot of us are dependent on others and do not contribute much "worth".

and guess what? disabled people still deserve a place in the world. disabled people still deserve the supports they need. because they are people, and that should be enough to support them and believe they deserve a place at the table.

if your only rebuttal against discrimination is its objective inaccuracies, you are meeting bigots where they are at. you are validating the very concept that if and when people are truly incapable of being equal to the majority, that means they are worth less. this causes some leftists to then try to deny the objective realities of disabled people and/or become ableist themselves.

your rallying behind marginalized groups should start and end with the fact that people are completely worthy of life and equity, because they are fellow human beings and that should, frankly, be enough.

[xxtowardsthesunxx]

My chronic illness only adds to my mystique and allure-

[xxtowardsthesunxx]

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

[xxtowardsthesunxx]

if you're seeing this on my blog: welcome.

if you're seeing this in a tag: this post is just a way for me to track what tags I use. I apologize for the spam.

[xxtowardsthesunxx]

Shout out to the ten year old who just got diagnosed. Shout out to the housebound fourteen year old. Shout out to the eighteen year old who can’t go to the university they wanted. Shout out to the twenty two year old who can’t get a job. Shout out to the twenty six year old with a caretaker. Shout out to the thirty year old who can’t buy their own house.

Shout out to young disabled people. We exist.

[xxtowardsthesunxx]

I haven't posted much here in a while; wanted to post an update.

recently, my dr told me he now suspects I do have eds, rather than mctd. so now we're trying to get me into a rheum and have genetic testing done. the gp suspects ceds, while the np has some suspicion it could be veds. it feels really weird to have this curveball suddenly thrown at me, five years into my journey.

I'm trying to engage more in the online community, so this is my official introduction post for edsblr. so. hi 👋

[xxtowardsthesunxx]

I'm happy to help! working with an eds-informed physical therapist or something along those lines can be helpful re: knowing what exercises will help vs do more harm, making sure you have correct form, etc. you could also ask another kind of medical professional that would have some knowledge on the subject. I wish you the best in figuring it out.

Did Not know my arm was out of place until my shoulder popped back in. Anyways, EDS people, y’all got tips on low impact exercises to keep this bitch in place???? Like I know you’re supposed to build muscle but how do I do that without fucking it up worse?