#hypermobile eds | Explore Tumblr Posts and Blogs

neuroticboyfriend · 2 days

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Hi all, i need a bit of reassurance. I know none of you are professionals but, I've been having these strange attacks that are starting to scare me. This is what they're like:

Symptoms:

• Severe neck pain that radiates to the face and under the skull (right side only)

• Mild numbness on side of face/arm (right)

• Blurry vision in right eye only

• Sudden severe fatigue

• Mild disorientation and confusion

• Mild speech difficulty

• Moderate difficulty walking

Onset: Sudden - Duration: 30 mins to 1.5 hours

Frequency: Week of 5/26/24: 2 to 3 times (has occured prior to this)

Relevant conditions: Cervical radiculopathy, migraine headaches, connective tissue disorder

Relevant family history: Aneurysm (father, at 18), Stroke (paternal aunt, in 30s)

...Basically, I'm not crazy for wanting to get aneurysm/stroke/TIA ruled out, right? I should call my doc or insurance's nurse line? Even if it's a migraine, I shouldn't risk it given my family history? Last time it happened was yesterday and the pain was the worst it's been so far.

Also just need to write this out for my sanity cuz staring at this, my reasonable side says better safe than sorry. Ugh. I hate having been gaslit so much.

#julian rants #vent #gaslighting #neisvoid #eds #heds #hypermobile eds

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pawoooon · 3 days

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Sun spider appreciation!!

I was so happy when I found out she had EDS. It made me feel less alone (especially considering that I got diagnosed the same summer the movie came out). I like that she's not a "tragic" depiction of EDS which is refreshing because the conversations surrounding EDS and living with EDS can sometimes feel hopeless. Hopefully we get to see more of her in the future.

Also having EDS is so strange like my skin is stretchy (cool party trick!), I'm hyperflexible and I dislocate. If there is a disability that is cool for a superhero I think this one is a solid choice 😎.

#Yeah I rewatched spiderverse today so what #this is my 6th rewatch I think?#sun-spider #sun spider #across the spiderverse #charlotte webber #elhers danlos syndrome #hypermobile eds #spiderverse #spiderman #chronic pain #chronic fatigue #disability

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potsiepumpkin · 1 year

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When the chronic fatigue is chronic

#chronic illness #chronic pain #disability #pots syndrome #postural orthostatic tachycardia syndrome #chronic fatigue #invisible disability #fibromyalgia #spoonie #chronic life #hypermobile eds

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crippledpunks · 1 month

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i wanna say fuck you to anyone who shame disabled, chronically ill & neurodivergent people, especially homebound folks, for "spending too much time on their phone/on the internet/etc." when it's the only (Somewhat) accessible way for them to experience the world. many people don't get to get out much even if they want to because of their disabilities. shaming someone for trying to connect with the world, make friends and engage with hobbies in ways that are accessible to them is beyond cruel and unnecessary

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chronic-counter-user000 · 4 months

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dear parents, if your child has "seemed fine this entire time" but is now seeking out diagnoses, mobility aids, medical help, more doctors, and is sharing their pain more. do not fucking shut them down? even if it ends up being nothing, showing them that support through all of that will seriously help them. if it ends up being something and you're a bitch to them, the joke will be on you and that strain on your relationship will never go away because. you didn't listen.

listen to kids. we tell you what we need, it's not that hard.

#heds #hypermobile eds #chronic illness #chronic fatigue #chronic pain #chronically ill #invisible illness

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clownrecess · 11 months

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Happy disabled pride month to disabled people with undiagnosed physical disabilities

Happy disabled pride month to disabled people with undiagnosed mental disabilities

Happy disabled pride month to mobility aid users

Happy disabled pride month to disabled people who are in constant pain

Happy disabled pride month to AAC users

Happy disabled pride month to disabled people with ableist family

Happy disabled pride month to fat disabled people

Happy disabled pride month to disabled people with scars

Happy disabled pride month to disabled addicts

Happy disabled pride month to disabled people who's disability is progressing

Happy disabled pride month to disabled people who love their disability

Happy disabled pride month to disabled people who hate their disability

Happy disabled pride month to disabled people with underrepresented and/or uncommonly known disabilities

Happy disabled pride month to all disabled people. I love you. /p

#multiply disabled #disabled pride #actually autistic #physically disabled #autipunk #cripplepunk #aac user #nonspeaking autistic #nonspeaking #disabled #autism #aac users #aac device #neurodivergent #chronic fatigue #hypermobile eds #hypermobile ehlers danlos #undiagnosed ehlers danlos #ehlers danlos syndrome

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aestheticofalifetime · 5 months

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Me when my disability disables me

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

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panicismydefaultstate · 8 months

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Just in case anyone else needed to hear this today-

Your health is not your fault. You didn’t do anything to “deserve” this. And you are right, it isn’t fair. You are allowed to feel upset, hurt, angry and jealous that your health, body or mind disables you.

It’s not fair, and that sucks. You are allowed to scream about that as much as you need to.

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the-archenlandian-court · 7 months

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Things I wish I knew before I got diagnosed with a chronic illness

You’ll forget - Sometimes you’ll straight up forget you have a condition, that you have a disability, and that others don’t feel like you

Your most important job is to stay alive - Everything else is secondary, as long as you stay alive you have achieved something

It’s okay to cry - It’s normal, chronic illness is sucky, but don’t cry for too long or focus too hard on everything that’s wrong because it will make things worse

Your body is in a war, be kind - Your body is constantly fighting against itself, give it time to rest and heal, eat food and drink, do what you can to aid in the battle

If you feel like you can’t do it, you can - Have a cry, eat some ice cream and have a nap, when you wake up you’ll find the strength to keep going

Some advice from younger me; January of 2021 (I just found it stashed away)

#advice #chronic illness #things i wish i knew #disabled #disability #chronic pain #fibromyalgia #chronic nausea #chronic fatigue #cfs/me #hypermobile eds #pots

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overqualifieddog · 6 days

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[ID: a mock caution sign. The illustration, done in bold black, shows a set of hyper mobile hands stretching the thumb to reach their forearm, and lightning bolts float above the writ. The text on the sign reads “Warning Just because you can bend that way doesn’t mean you should.” /end ID]

Happy EDS awareness month.

#hypermobile eds #eds awareness month #heds #disabled artist #my art

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walkingsnakes · 5 months

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HER FR !!!

roxie richter chubby and hypermobile propoganda

text- waiting for pain to go away before going on a date

comic text- her weakness is her kness

...she has knee armor!

[TEXT ID: Two drawings of Roxie Richter from Scott Pilgrim along with a small comic near the bottom. In the top left corner Roxie is in a pink bra and underwear sitting across legged with the caption 'Waiting for pain to go away before going on a date' looking annoyed. Along the right side she is standing in a black hooded shirt and shorts with a yellow cane.

The comic below starts with Ramona Flowers telling a confused Scott Pilgrim 'Her weakness is her knees' before shifting to a close up of Roxie's knees. The next panel is Scott turned looking at Ramona frightened telling her 'She has knee armor' to which Ramona looks disappointed]

#roxie richter #hypermobile eds #hypermobility #scott pilgrim takes off #spvtw fanart #spvtw roxie #scott pilgrim fanart #scott pilgrim vs the world #spto fanart #roxie fanart #roxie ritcher fanart #ramona flowers #ramona flowers fanart #disability headcanon

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neuroticboyfriend · 1 day

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Earlier today I was thinking about how I'll be in pain every day for the rest of my life, but a kind gentleman today told me that I don't really know that. Yeah, I have chronic issues. Yeah, there's no cure right now.

But I still can't predict the future. I have no idea what kind of medical advancements will occur in my lifetime, or what treatments I'll find in the future. It does seem grim now, and I do know that as it stands, my pain isn't going away. There is no end in sight.

That doesn't mean I have to condemn myself for eternity, though. It just means I have to take each day as it comes, take care of myself as best I can, and just stick around to see what happens. Either way, my life is worth living. Disabled lives are not hopeless. There will be something good in each day, as long as I'm open to it.

#softspoonie #chronic illness #chronic pain #chronically ill #heds #hypermobile eds #eds #ehlers danlos syndrome #disabled #disability #neisvoid #hopepunk #hope punk #hopecore #hope #self worth #disability positivity #disabled positivity

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gracethyomen · 1 month

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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

#hypermobile ehlers danlos #ehlers danlos syndrome #ehlers danlos zebra #ehlers danlos problems #ehlers danlos awareness #ehlers danlos life #heds #hypermobility #hypermobile eds #hypermobile joints #hypermobile problems #Vascular EDS #veds #chronic joint pain #chronic illness #chronic pain #chronically ill #chronic illness awareness

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crippledpunks · 8 months

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shoutout to every person who deals with incontinence. i dealt with bedwetting up until my early teens, and now deal with stress and urge incontinence and for years never wanted to talk about it because of the shame and stigma other people place on not being able to control your bladder or bowel movements.

incontinence is a disability. it's not gross or wrong to talk about incontinence. incontinent people are not dirty or disgusting. if we could control these parts of our body, we would. we're not an inconvenience for being this way, and we don't have to be treated like a burden or like we need to be "fixed".

whether or not you use incontinent products like briefs, pads, diapers, plastic bed sheets, or whatever else, you are loved, important, and deserved to be seen when there are conversations about disability awareness and acceptance. we don't deserve to hide in shame when all we need is to be accommodated and accepted.

#cripple punk #disability culture #cripplepunk #incontinence #disability #disabled #physically disabled #hypermobile ehlers danlos #actually hypermobile #hypermobile eds #arthritis #chronic illness #chronically ill #chronic pain #crip punk #our writing #chronic fatigue

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chronic-counter-user000 · 3 months

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you're allowed, love. you're allowed to hate that you can't do things. you're allowed to despise your own family for denying you anything. you're allowed to be spiteful and you're allowed to be irritable.

you didn't choose this.

and you're allowed to yell.

scream, love.

fucking scream.

I DESERVED MOBILITY AIDS.

I DESERVED HELP.

I DESERVED A BETTER COMMUNITY.

because you did, you did deserve those things.

you're ill.

#chronic illness #chronic fatigue #chronically ill #heds #chronic pain #hypermobile eds #invisible illness #disabled #actually chronically ill #crip punk

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melodymorningdew · 7 months

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I cannot fight for my health and fight the world at the same f**king time.

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