Friendly Neighborhood Autistic

Hypermobile Ehlers-Danlos Syndrome (hEDS) 🦓🦓🦓

Having hEDS is moving your shoulder and inch and feeling it pop so violently that you have to check for subluxations (or to see if it glows in the dark (⊙ˍ⊙)).

Having hEDS is waking up and deciding that you need more sleep, but it ain’t happening (fatigue and sleep problems).

Having hEDS is making 40 year old man noises when you move, yet being able to reach your entire back with one hand (stiff, yet hyper mobile).

Having hEDS is not knowing where to place the heating pad (widespread chronic pain).

Having hEDS is feeling like you spawn a new condition twice a month (generalized health problems).

Having hEDS is being asked by strangers about your cane (invisible disability).

Having hEDS is feeling like you’re collecting braces for every joint in your body (joint instability).

Having hEDS is having a pulse of 130 and people saying you need to see a counselor for stress management or other unsolicited advice (orthostatic intolerance and tachycardia).

Having hEDS is dying of heat exhaustion in 85 degree weather (temperature dysregulation).

Having hEDS is wondering in what way your stomach is malfunctioning, because it could be one of ten things (bowel and digestive issues/ allergies and food sensitivities).

Having hEDS is being told there’s nothing wrong with you, when that couldn’t be farther from the truth (symptoms are scattered/ seem separate or unrelated to each other, tests come back normal, findings don’t make sense, may appear psychological).

Repost if you too are a Zebra, or to spread Dazzle awareness and support ✨✨✨

Ehlers-danlos is valid. It may not be a commonly known condition, but we can change that!!!

hey, if you have a friend with a disability/chronic pain, here’s a helpful tip! /gen

there’s a phenomenon in chronic pain patients where they don’t express pain the same way people who don’t experience chronic pain do. if we reacted to all level 5/10 pain like everyone else, we’d be exhausted constantly because it takes a lot of energy to scream and cry.

sometimes, a pain response looks like shutting down. for me, i tighten up, my breathing gets more labored and intentional, and i tend to move very little. if you have a friend with chronic pain and you notice these cues, ask them if they’re okay and what they need. if they need to be left alone, leave em alone. if they need support, support them. if they need meds or to be taken somewhere else, do that. trust me, they would appreciate it very much.

Hey all! Recently gotten into a debate with someone about why it’s not a particularly lovely idea to make jokes about “those attention seekers” that use crutches or joint supports...

Can you do me a favour and like or reblog this if you have ever had rude comments made to you (as a disabled person) about your supports/mobility aids that has made you feel uncomfortable or self conscious?

Trying to prove a point that “well we only say it about the actual attention seekers!” absolutely does not work as you have no way of knowing why someone needs an aid.

I still don’t have many joint supports because people believe that they will cause muscle atrophy that will make my condition worse. The only ones I own are soft wrist compression braces that I bought myself. The ones I should have are hundreds of dollars.

Hey everyone! I was just wondering if any of you had any advice for dealing with heat intolerance. I have a roadtrip to Yellowstone coming up and get really really sick in the hot and I get motion sickness and we'll be in the car for hours at a time for days at a time I an environment that is much hotter than where I live. I'm kind of scared that I'm going to spend the entire time feeling nauseated

If you can, pick up as many disposable cold packs from a pharmacy as you can. There's ones you can shake and they get cold for a while.

Hand fans are your friend. So is breezy clothing, don't wear synthetic fibers if you can avoid it, they don't breathe a bit.

Drink drink drink. As much gatorade as you can manage- The better your PoTS is managed, the easier the heat will be.

Try and get a water bottle made to stay one temperature. And fill it to the brim with ice whenever you can.

Wear compression socks. It may make you warmer for a bit, but it will lessen the effects of your PoTS.

And the MOST IMPORTANT THING: If you're feeling ill, IMMEDIATELY TRY TO COOL OFF. Don't try and stick it out. Us Potsies are far more susceptible to things like heat stroke. If you start to feel light headed, get to a safe place and lie down.

The reason we feel so bad in the heat is that heat relaxes us. It opens up our blood vessels more, making our blood move even worse than it already does. Treat the PoTS, and the heat will get easier.

TL;DR: Cold packs from a pharmacy, hand fans, light natural-fiber clothing, hydrate, compression socks. And remember: SAFETY. COMES. FIRST. If you feel too sick, if you feel light headed/dizzy, go lay down and try to cool off.

Thank you for this! I struggle a lot with heat intolerance despite technically having a different diagnosis.