#HSD

[aestheticofalifetime]

Me when my disability disables me

#heds #hsd #ehlers danlos #ehlers danlos syndrome #hypermobile eds #hypermobile ehlers danlos

[chaos-and-ink]

Nothing About Me Is Straight

I'm making stickers based on my chronic illnesses for my final project in my art class. This is the first one! If people like them I'm thinking about adding them to my shop in the summer when I have more time.

Funny enough I killed my wrist and fingers trying to draw this. ouchie i need to buy some splints soon

#lgbtq #lgbt pride #ehlers danlos syndrome #hypermobile ehlers danlos #hypermobile spectrum disorder #heds #hsd #joint hypermobility #hypermobile joints #sticker shop #sticker design #actually chronically ill #chronically ill #chronic illness #disabled #actually disabled #disability pride #cripple punk #cpunk #my work #queer

[thebibliosphere]

Been quietly rereading your posts about subluxation of joints and I'm pretty sure that's what my hip keeps doing and why I have several weeks of not being able to walk. I know I'm hypermobile but I never thought about EDS until now (my partner has it bad, and I feel like I'm appropriating for even considering that I might have it) but usually subluxation and hypermobility are signs aren't they?

They can be yes— and just because someone else has it bad, doesn’t mean you need to suffer more to have your problems acknowledged.

Hypermobility Spectrum Disorder and EDS are just that, spectrum disorders.

Some of us might be constantly dislocating joints while someone else might be so stiff from protective muscle splinting (common in hEDS and HSD) that they rarely dislocate anything but their pain is still significant because of the toll it takes on the body.

Others might have stretchy skin (I don’t) while someone else might have problems with their internal organs instead (I do.) Some develop mast cell instability, while others remain totally fine in that regard.

The fact that you cannot walk for several weeks at a time is not mild. That is actually a severe problem. No able bodied person would put up with that and think “oh but X has it worse so I don’t want to appropriate their disability from them.”

They’d be in the ER screaming about suddenly not being able to walk.

The good news is that targeted physical therapy that focuses on joint stability really can help. I know far too many doctors who don’t see the point in diagnosis because there’s no cure, but you can improve your quality of life with PT and pain management.

Good luck. I wish you well.

#chronic health tag #HSD #hEDS #ehlers danlos syndrome

[10-dutchies-12-bicycles]

the drawbacks of being hypermobile may vastly outweigh the benefits but at least i can reach my entire back if i want to scratch it 😌

#heds #hsd #ehlers danlos syndrome #hypermobility #alright i needed to get these two posts out of my system GOODNIGHT YALLLL <3 #mine

[crippleprophet]

to the discerning cripple kt tape too is a type of lingerie

#hypermobility #heds #hsd #kt tape #mac.txt #cripsex

[wormonastringtheory]

I was so active today and now I may pay the price (joint ouchie)

#hypermobility #hsd #hypermobility spectrum disorder #joint pain #joint issues #chronic illness #chronically ill #spoonie #disabled

[existentialscreaming]

Having a period while being disabled and trans has got to be a form of torture.

#ill be like omg im fairly low in pain today!! then the next day my period comes and im bedridden #this post is about transmascs and trans men. dont derail #if you have any chronic pain / pots tips twoards periods please let me know becuase im in so much pain that i can barely sleep and wake up #super frequently #pots #chronic pain #cpunk #chronically ill #hsd #axel cposts

[human-timelord]

Wishing my chronic pain could manifest as a person so I can yell, with all my pent up anger, sadness, frustration and grief 'IM TAKING BACK THE LIFE YOU STOLE'

#for what you did to me and what ill do to you #the damage youve inflicted #deathwish is so important to me #ive lost so much to chronic pain and i wont let it take anymore #i cant #it's not a fashion statement it's a deathwish #my chemical romance #mcr #gerard way #mikey way #ray toro #frank iero #jarod alexander #chronic pain #hsd #crps

[compost-intraining]

Things I didn’t realize were from hEDS until recently! 🦓

Disclaimer- a lot of these symptoms can be normal by themselves, if you suspect you have EDS I’d suggest looking into the 2017 diagnostic criteria. Some of these I was told my doctors, others I found online. Just trying to spread awareness for EDS and some of the lesser known symptoms :)

Stretch marks without history of significant weight gain/loss (especially around joints)

Poor vision

Heel papules (lil white bumps on your heel when you stand)

Heart palpitations

Finding odd sitting positions more comfortable

Weak nails (ridges, breaking easily, etc.)

Being unable to walk in heels lmao

Tinnitus

Raynauds

Bad teeth (frequent cavities, dental crowding, etc.)

Holding a pencil oddly, with tight grip

Brain fog

Scoliosis (I don’t have this but my cousin does and so do a lot of other ppl with EDS)

Poor coordination and balance issues

issues with anaesthesia

Flat feet

Long fingers (arachnodactyly is the fancy name)

Getting blisters very easily

GI issues

Anxiety lol

Headaches

Fatigue

Super easy bruising and scarring

Temperature dysregulation

I can go on- there are so many and hEDS is SO much more than weak joints. Honestly the more I learn about it the more frustrated I get that I didn’t get diagnosed earlier. Sending love to any chronically ill ppl seeing this. You are so valid even if you’re undiagnosed <3. And if you have any questions ab hEDS or chronic illnesses in general, feel free to put it in my ask box. I’m not a doctor or anything but I have done a lot of research :)

Edit: would like the clarify that these apply to JHS and HSD as well. Imo they’re essentially the same thing, hEDS just has a stricter diagnostic criteria

#heds #pots #edsawareness #chronic illness awareness #chronic illness #hypermobile ehlers danlos #ehlers danlos #hsd #hypermobility #disability #disabled #cripple punk

[squarebracket-trickster]

Speaking of... anyone know of any resources for writing hypermobile (incl. HSD, EDS) characters?

I'm looking to create a guide of my own but I want to see what others have already said, provide external resources etc. Tragically, I haven't had a lot of luck coming across things.

#hsd #hypermobility #hypermobile spectrum disorder #ehlers danlos syndrome #heds #square rambles about hypermobility once again

[gayandloveableperidot]

My school is shifting back to have a higher focus on physical (as in non digital) methods of participating… I don’t mean generally being in person, that happened a while ago. I mean last year I only really needed a notebook for math, science, and art. This year I need one for all of my classes.

This is reasonable for classes like pre-calculus, trying to take notes digitally would be really difficult. But why do Spanish, Sports Medicine, Chemistry, History, and English each need their own separate notebook to use for as much as the entire class depending on the day?

Now, I’m disabled. I officially have gHSD, possibly hEDS (have yet to be tested). I have a doctor’s note that says I can type because writing that much is horribly painful. But not everyone in my situation does.

Computers seriously increase accessibility. That being said, I think the option to hand write is also important. We just need to allow accessibility for everyone, not slight convenience for able bodied people who never need to think about this kind of thing.

#actually disabled #heds #hsd #g-hsd #cpunk #cripplepunk

[chaos-and-ink]

EDS/POTS/Scoliosis Stickers

All of these will become available on my shop in June. You can follow my page on Ko-Fi to get an email update when they're for sale so you don't miss it :)

Tomorrow is the last day of my class and this is my final project. Chronically ill stickers. I definitely plan to make more but this is what I have so far. I can't wait to sell these in the Summer and if anyone has suggestions for what kind of stickers I should make next, absolutely let me know! I love getting sticker ideas from others.

Reblog to share them around :) I'd really appreciate it.

Here is the link to my shop : Chaos And Ink

Image Descriptions are from left to right

[ID: A skeletal leg with the knee hyperextended and a rainbow behind it. The text reads 'Nothing about me is straight' / A crooked vertebrae column with a rainbow behind it. The text reads 'Nothing about me is straight' / A zebra pattern awareness ribbon with the initials 'EDS' on the right side / A skeletal arm with a hyperextended elbow and a rainbow behind it. The text reads 'Nothing about me is straight' / A blue awareness ribbon with the initials 'POTS' on the right side / A black leg with a hyperextended knee and a decorative vine tattoo on the thigh. The text reads 'Clinically too bendy' / A white wrist and hand with the thumb pressing against the forearm. The hand wears a ring and bracelet and has a tattoo that reads 'Enough'. The text reads 'clinically too bendy' / A latino arm with a hyperextended elbow and a bracelet and watch. The text reads 'clinically too bendy' End ID]

#my work #scoliosis #ehlers danlos syndrome #postural orthostatic tachycardia syndrome #pots #pots syndrome #spoonie #disabled #physically disabled #cripple punk #c punk #hypermobile eds #hypermobile joints #joint pain #chronic pain #ehlers danlos zebra #potsie #dysautonomia #actually disabled #disability pride #lgbtq #lgbtq pride #lgbt #lgbtqia #stickers #sticker shop #described #image described #hypermobile spectrum disorder #hsd

[insane-cripplepunk]

Chronic Pain: I put that hurt on everything!

#cripplepunk #cpunk #cripple punk #chronic pain #hsd #hypermobile spectrum disorder

[crippl-hacker]

So how do my fellow mobility aid users feel about other people commenting on your usage (or lack thereof) of mobility aid?

I am a part time rollator and cane user. I often use my rollator around my campus due to long lines in the cafeteria and standing would be awful. In the past few weeks other people have commented on the fact that I’m not using it (and am using my cane or walking independently).

To be honest I feel kind of annoyed when other people point it out? I don’t know why but it just rubs my feathers the wrong way. I don’t like others commenting on my mobility aid usage unless it’s a compliment about my stickers or a fellow disabled person. With my HSD my mobility aid usage varies often - how do other people feel on the topic?

#I really want to hear other folks thoughts and stories #cane user #rollator user #HSD #actually disabled #mobility aid user #cripplepunk #cpunk #wheelchair user #hEDS

[sweetdayspng]

First post!

Make sure to follow for more posts!

#transparent pngs #png #hello sweet days #hsd #Sanrio #hello kitty #video game #pochacco #my melody #wish me mell

[wormonastringtheory]

hi beloveds so we learned today i have hypermobility spectrum disorder! it wasn't heds like we thought but the treatment options and care and comorbidities are basically identical according to the NP who saw me...but oh my god after this long to finally have official answers!!!!! to be referred to specific care for my condition!!! holy shit

#heds #hypermobility spectrum disorder #hsd #spoonie