#just ehlers danlos things

[thebibliosphere]

We're two days into the new year, and I need expensive dental work done.

wELP.

[daethelflaed]

my poor posture is actually- yeah it’s part of the outfit

[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.

[stellaltumi]

shoutout to all the fellow disabled people who spread awareness and advocacy even when they have no energy to do so, I see you, I love you, and you are so deeply appreciated. your story has the potential to be someone else's survival guide.

[weaponizedhorse]

If you have autism, ADHD AuDHD, depression, anxiety, OCD anything that causes you executive dysfunction where you feel overwhelmed by tasks and don't know where to start I need you to stop and read this because this website is about to change your life.

It is called goblin.tools and it is completely free and I believe it is life changing.

So this magic todo taskmaker is amazing. You can give it any kind of task you need to do and it will break it up into easy to understand, manageable, and accomplishable steps, (that you can then check off the list which probably my favorite part) like cleaning your room, making coffee, etc

In this example below I put the Magic ToDo Task as "take a shower" (but it can be any task)

Here is the lowest spicy take (aka not broken down into many steps)

And here is the highest spicy level (where the tasks are broken into many easily managable step that will tell you exactly what to do)

Any parts of this you feel like didn't give you enough steps? Need more clarity? No problem! Any step you can edit or break it into even smaller steps!

Let's say you are have a foggy brain day and need more instructions for washing your hair, here you go!

Legitimately it can break down any task, making them so much more approachable and manageable.

And if this incredibly cool task helper thing wasn't enough for you, the website has five other functions

A feature that adjusts the tone of your text, allowing for a more professional or sarcastic expression, ideal for business emails.

An emotion detection tool, which helps interpret the emotional content of a text, identifying anger, frustration, or other sentiments to clarify communication misunderstandings. (I think this feature could help a lot of autistic people SO much)

A function that estimates the time required for various activities, such as making the bed, providing practical scheduling help

There is an entire *insanely* cool cooking function (I am gonna have to make a post about that)

Something called the "Compiler"? I honestly don't get it. It says "Compile my braindump into a list of tasks" (so if someone figures that out please let me know)

And since it is tax season under the cut are the steps it gives you for filing your taxes on the lowest and highest task breakdown levels! :)

[that-disabled-princess]

I think I just tasted what it feels like to be a straight white man.

My younger sibling forgot her lunch this morning, so I went to her school to drop it off. I was using my cane. When I got to the person behind the desk, she said, "It's nice of you to drop that off, despite slowing down a little."

And, okay. I've gotten this kind of thing enough times, and it gets both old and uncomfortable real fast. But instead of wallowing in the discomfort, I spit out the line I've practiced in the mirror a hundred times, the line I delivered in a light, conversational tone:

"That's not a very appropriate thing to comment on, now is it?"

And y'all would not believe how quickly her smile dropped. She was apologizing profusely, and I didn't say a word--just held my smile.

But. All the cards were in my hand now. It was her turn to feel uncomfortable. And oh, what a heady rush of power it was. I walked out of that school grinning like a maniac.

[chronicsymptomsyndrome]

As a kid my family used to make fun of me for stuff that is apparently exclusively reserved for “old people” like rolling across the room in a rolly chair to grab something (instead of getting up and taking three steps) or sitting down at a table to do quick food prep like cut fruit or scramble an egg (instead of just standing at the counter for 90 seconds) TURNS OUT what they called laziness was just disability all along haha TURNS OUT I just needed a mobility aid yet here I am today still without one because they gaslit me into believing I was “just lazy” and it took me decades to finally understand that’s not true. haha who knew

[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.

[spookietrex]

Going on a date today. Gotta explain "Oh I'm not making faces at you. You were just cute enough to get me out of my cave despite the chronic pain I'm in. Today is a high pain day. Please do continue making small talk as if my body isn't trying to twist itself into a painful pretzel."

[l00ney-m00ny]

Let's play a fun game!!

Symptoms are: headache, light sensitivity, shakiness in limbs, overall weakness of limbs, and I definetly overdid it today while walking, im due, and I feel like im gonna vomit.

[lokidanger]

I never quite care how people draw poses and whether or not they make a mistake bc I just love art that much

but I've seen some people fix people's poses with the "it's impossible to move/put (x) in that position" explanation and I just look at my bf who has HEDS and like... yeah it is possible?

so whenever I see a character "accidentally" being too flexible I just think "ah yes, this character has heds" (accidentally in quotations because my bf unknowningly draws characters being too flexible. I think is great, a piece of you is literally in your own art). That's why certain art fixes just feel a bit dumb to me

[ebonyheartnet]

Me: Okay, I really want to get things done, but I’m sitting down as soon as I get up. Brain, what’s happening?

Brain: Alright, so you know how there’s the ADHD thing?

Me: Yeah, but this doesn’t feel like it’s just that.

Brain: You’re not wrong, but I don’t think you wanna know.

Me: It’s not gonna get better if I don’t figure it out.

Brain: :/

Brain: I’m gonna add them, but don’t say I didn’t warn you.

-Hips has entered the chat room-

Hips: AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAA

Me: Oh my god, kick them! Kick them now!

Brain: Sorry, they have admin access.

Me: WHY WOULD YOU MAKE THEM AN ADMIN?!

Brain: *shrugs*

Brain: You ignored them for so long that this was the only deal they’d take.

Hips: YOU’RE GONNA HEAR ME, MOTHERFUCKER! YOU’RE GONNA HEAR ALL OF US!

-Shoulders, Spine, and Ankles have entered the chat—

Me: Bullying!

-Abdomen, Calves, Thighs, Knees, and Scalp have entered the chat—

Me: Brain, do something! This is bullying!!!

Brain: Sorry dude, but I can’t go against the union. That’s scab behavior. :/

Me: UNIONS DON’T JUMP INNOCENT PEOPLE!

Hips: K

Shoulders: U

Knees: N

—Several body parts are typing—

[cannibology]

temperature sensitivity is such an annoying part of my disability. what do you mean i can’t go out in colder weather or warmer weather because the cold gives me allergy-like symptoms that last for days and makes my hands stop working but the heat makes me lightheaded and headachey and too exhausted to think? what do you mean i can’t be in direct sunlight or direct contact with cold without breaking out in hives? why must i have the physical constitution of a sickly victorian boy?

[iamroyalgayness]

Ok, the weirdest thing just happened, I was just sitting on the couch watching random yt vids, and I suddenly got a knock on the door. I answered it, and they said they were looking to rack up some leaves for gas money.

Now that's not necessarily weird in itself, but the weird part was they said that our neighbors across the street first and the neighbor said that a disabled woman lived here, so that's why they wanted to help here if they could. I just politely turned them away and said we had been just busy lately.

Here's the thing, the neighbors aren't entirely wrong, I am not a woman (I'm afab tho) yet I am disabled, but I only have invisible disabilities (hEDS, chronic joint pain, asthma, etc) and I don't use mobility aids (yet) and we don't really talk so I have no idea what led them to not only say there was a disabled person here but to just tell random people who showed up at their door where a disabled person lives.

I know they were probably trying to be nice and help both us and the people in need of gas, but damn that was weird as hell and kinda unsafe. Idk, maybe I'm just reading too much into it...

[melodymorningdew]

Found more mouse poop in my bed and I still haven't healed from the ER and might have to go back 🙃

I adore stress. More please. /s

[that-disabled-princess]

Made another zine while stuck at home, but I like it so much that I think I'm going to make copies to give out to people! I'm thinking of taking a bunch of copies to pride next month :D

[ID: Two photos of a zine spread out. The zine is written in purple pen. In order, the pages read:

Cover page: Ehlers Danlos syndrome.

Page 1: What is EDS? EDS is a group of 13 genetic connective tissue disorders. Most, if not all, subtypes are rare diseases. Hypermobile, classical, vascular, myopathic, periodontal EDS + more.

Page 2: EDS can cause many problems, including chronic migraines and heart problems. It can affect everything from friendships, to hobbies, to your diet.

Page 3: Symptoms. Hypermobile joints. Fragile, stretchy, translucent skin. Digestive issues. Dislocations. Chronic pain.

Page 4: Fast facts. 80% of people with EDS also have POTS. EDS is commonly misdiagnosed. EDS is a dynamic disability.

Page 5: Why the zebra? "When you hear hoofbeats, think horses, not zebras." Doctors are taught this phrase, meaning many rare diseases are missed.

Page 6: Sometimes, when you hear hoofbeats, it really is a zebra!

Back cover: Share to raise awareness!

On the cover page is a zebra patterned awareness ribbon. On page four are drawings of a cane, a forearm crutch, and a wheelchair. /end ID]