#possible ehlers danlos syndrome

[dewiduzthings]

All my joints are so damn sore

#possible ehlers danlos syndrome #ehlers danlos syndrome #pots syndrome #possible pots syndrome #postural orthostatic tachycardia syndrome #im being testing for both as well as gastroparesis #were pretty damn sure i have all 3 at this point #chronic illness

[a-healthy-dose-of-apathy]

you know, normally i don’t complain about my chronic pain on here, but my hip was dislocated for an entire month and i didn’t know. i just felt a lot of pain but my logic was ‘well, i can still walk so it’s fine’. no, it was in fact, not fine i discovered, as my hip snapped back into place.

#chronic pain #hypermobile eds #hypermobile ehlers danlos #ehlers danlos awareness #dislocation #chronic fatigue #possible ehlers danlos syndrome #joint hypermobility

[bloodyscott]

my joints ache n feel like their about to dislocate

#hypermobile spectrum disorder #hypermobile spectrum #possible ehlers danlos syndrome #physically disabled #cripple life #cripple problems

[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.

#disability pride month #disabled poc #heds #ehlers danlos syndrome #chronic pain #black and disabled #disabled lesbian #This is really vital to my life right now bc i cant do things atm #crutches would make me doing things by myself again possible #i just want some more mobility and bodily autonomy

[sawyer02dk]

Time to see if I get medical answers to what the fuck is wrong with me today or if I still have to wait :))

#possible ankylosing spondylitis #ankylosing spondylitis #as #possible ehlers danlos #ehlers danlos syndrome #heds #hypermobile #disabled #cane user #crutches user

[hack-saw2004]

saw an orthopedist today and 1: it was genuinely the best doctors appointment ive ever had (and ive had hundreds atp) i felt so listened to and he brought up so many things i never even would've thought of. 2: i went in thinking i might need shoulder surgery or something and walked out with the knowledge that i might possibly need brain surgery... so thats... yeaaaahhh

#i might have chiari malformation if ur curious #i also may have arthritis but thats not nearly as scary as POSSIBLY NEEDING FUCKING BRAIN SURGERY #lol lmao even #chronic illness #ehlers danlos syndrome #eds and comorbidities #disabled #genuinely unsure of how to process this information #mri soon hopefully to confirm whether or not i will actually need brain surgery

[sonny-ray-of-goth]

I Will head canon Frankie Stein with Ehlers Danlos Hypermobility and no one will stop me.

#frankie stein #monster high #possible ehlers danlos #ehlers danlos syndrome #hypermobile ehlers danlos #chronic pain #joint pain #imagine Frankie is always feeling some sort of pain when their joints pop off but because their so new they don’t fully get it

[generationlosers]

Me: What if i’m faking being disabled

Also me, actually unable to breather after 10 laps in the fitness gram pacer test:

#hypermobile ehlers danlos #ehlers danlos syndrome #ehlers danlos problems #ehlers danlos zebra #ehlers danlos awareness #disability #physically disabled #disabled #the fitness gram pacer test #is a multistage aerobic compactly test #that progressively gets more difficult as it continues. #The 20 meter pacer test will begin in 30 seconds. #Line up at the start. #The running speed starts slowly but gets faster each minute after you hear this signal. [beep] #A single lap should be completed each time you hear this sound. [ding] #Remember to run in a straight line and run as long as possible. #The second time you fail to complete a lap before the sound your test is over. #The test will begin on the word start. On your mark get ready start.

[alostlittleriverlotus]

so like. I'm getting an inhaler for the time until I can see a professional about my breathing difficulties and possible asthma. And legitimately almost didn't get it despite having it be so bad I can barely even handle things (probable POTS doesn't help and neither does allergies with a deviated septum) cause my mom didn't want to get it in case of side effects cause when she had tried an inhaler years ago, it hyped her up and stuff. And she says she's sensitive to medicines and was worried about side effects if i use it.

1: I'm someone that seldom experiences side effects with most medicines. The biggest one was with an allergy medicine causing me stomach pain and another causing me leg cramps if I took it too frequently.

2: I. AM. NOT. YOU. I am so sick of my mom trying to keep me from stuff that could genuinely be a help cause she's worried about it. Stop it. Just stop it!!! She didn't get me any sleep aids despite my sleep problems yet using some melatonin on really bad nights has actually helped me sleep cause my friend got so worried she bought some for me and I haven't actually needed one in a while. And she didn't want me to go on anxiety meds cause she was worried and she got rid of my Xanax since I "wasn't using it anyway" cause she was worried about it since it's addictive (I asked her if she thought any of us would start using it often or worried about us being addicted and she said no.) And I legitimately had many moments over the past two years where ichave felt i needed one.

Luckily my anxiety meds are handled, I have xanax just in case, and I've got everything I need. But I am sick of my mom controlling my fucking medicine and other shit because of HER WORRIES. When I'm literally given a choice or it's prescribed by doctors. Like stfu. Stfu!!!

And the fact my mom treats me like another one of her. My issues with my brothers got downplayed and she expected it to play out like hers. She ignored my autistic traits because she saw it as "just needing to change cause that's how the world works" like she did. She ignores how high needs I am because she thinks I just have "mild" autism and am "barely on the spectrum if I am on it at all."

Stop it. Shut up. I'm fucking reliant on her cause I'm terrified of doing things on my own and lose speech a lot and can't remember things easily. And she pays for stuff. So I have to have her there, but I'm sick of her acting like she gets the final say on MY medical stuff. I've had breathing difficulties worsen the past 5 years, worsen since I was a kid actually. Like. Let me have the inhaler until we can get in with a specialist and know for sure, let me see if the inhaler even fucking helps since legitimately doing small tasks leaves me gasping for air!!!

I am so sick of her dictating what my reality is, what my life is cause she thinks I'm just another version of her. And whenever I exist outside of this mini version of her, she shuts down and doesn't understand. She thinks I can control my emotional issues cause she did it and so I'm not trying hard enough when I have fucking episodes cause of the fucking stress and neglect I still fucking face as an adult!!!

And even then. Even in tbe appointment. She wanted me to get better and ease my pain so I could actually do stuff. Not in the like...regain my favorite hobbies. No. She means be independent. She still thinks fixing my physical pain is gonna do that. No. I can never be truly independent. I probably won't get a pure fix for my pain either. She still wants me to be functional and independent and acts like because I can't be, it's some terrible thing and it's so fucking condescending and insulting.

I am deeply traumatized, I have somewhere between medium to high support needs, I am a fucking polyfrag system, I have chronic pain and fatigue, I struggle to socialize cause of disorders and energy levels. Shut. The. Actual. Fuck. Up. My goal is NOT to be independent or functional or able to give to society. My goal is simply to lessen my pain and be fucking happy and get everything I was fucking denied as a child cause I was told to just fucking try harder. I will never be independent or functional even if my physical issues were all magically fixed. Cause i am still someone deeply traumatized with the type of trauma most people can't even fucking conceive of. And I am fucking fine with that. I am also someone that cannot be fully independent cause of shut down, mute episodes/speech loss periods, struggling with simple tasks, and more. And I am fine with that. My darling safe person is too. Stop expecting my end goal to be that I can be an independent abled functional person. Because I will never be that.

I simply just want to live and be happy and not be in constant pain or at least be able to manage my fucking pain. To have mobility aids and be patient with myself and to not push myself past limits. I just want to have fucking support and help with my disabilities. Shut the actual fuck up. I hate my fucking mother.

#actually traumatized #actually autistic #actually disabled #semispeaking #semiverbal #abusive mom #neglectful mom #controlling mom #chronic pain #chronic fatigue #possible pots #pots syndrome #heds #hypermobile ehlers danlos #hypermobility #ehlers danlos syndrome #disabled #mentally disabled #medium support needs #high support needs #actually semiverbal #actually semispeaking #system #polyfrag system #programmed did #programmed system #tbmc survivor

[caffeinatedopossum]

I feel like I have an unacceptably low level of control over my body. Like obviously there are some things that no one can control but I have like actual big problems because of it. I'm not really sure how to describe it but it's not just me being really clumsy (although that is an effect of it) or even the tics I have.

It's like I can feel my body moving wrong constantly but I can't correct it and it hurts and it sucks and I'm tired. I'm tired of hurting myself, making mistakes, breaking things, acting like it's fine when in reality I'm constantly afraid of how much any movement I make next could hurt me. I need to move to stay sane, I want to workout and get stronger and go on walks with my friends. I wanna get better. I can't even roll over in bed without pain and I'm just so tired.

#opossums chronic illness rants #seriously though this sucks so much and idk if theres anything i can do about it but i wanna try #its probably a combination of a lot of different things #like muscle weakness and instability from ehlers danlos syndrome both making each other worse #along with the poor proprioception from autism the dizzyness and weakness from the dysautonomia #the fact that i cant really see and even possibly inner ear damage (thats a new one that ive been suspecting more and more recently) #im not sure if the ear damage would be just from built up ear wax or maybe or something else #but im really not having a good time because it brings back bad memories #when i was a kid (8 i think) my mom was convinced i had compacted ear wax but given that she refused to ever #take me to doctors she decided she had to fix it herself #which led to a lot of excruciating trials where she stuck wires and que tips stripped of their cotton into my ears #and tried to scrape out whatever she could. even though i wanted her to stop because it hurt so bad i would start crying everytime #im also mildly suspicious that might be what damaged my ears in the first place... but i really have no way to know that at the moment #all i know is i dont want anyone looking in or putting things in my ears ever again #it doesnt even matter how much i trust them because now anything put in my ears hurt #like even when im just regularly cleaning them with que tips it hurts and im reminded that might not be normal #idk if you read these tags let me know if cleaning your ears is supposed to hurt i guess? #im honestly not sure. like i just always assumed i wasnt being gentle enough or something but it doesnt matter what i do #its not super painful either just a little bit so i ignored it because i assumed it was normal #since a lot of 'normal' things hurt for me. which i now know to my surprise isnt normal at all but i didnt figure that out #until i actually got people to believe that these things were hurting me #apparently its very hard to find anyom #who believes that opening bag clips or trying to lift a jug of milk are actually quite painful for me #they usually just say im way overreacting and when i was a kid i just believed them i guess

[cripplepunk-salad]

Hey thanks for the people responding my last post- Really cleared things up and I know what to do now.

Just. Small thing. I have a friend who used to use a mobility aid and no longer does, they intended to donate it once they’re physio got them off their cane, do you think it’s appropriate for me to ask if I can use theirs? They’ve offered it before temporarily when we go out and they rent a wheelchair. I don’t really have the money to be able to buy my own

#cripple punk #cripplepunk #queer cripple #ehlers danlos syndrome #possibly #actually disabled

[localfantom]

No one:

My right eye:

#the most ironic part is my dad is an eye surgeon #guess who might need eye surgery now #my vision got blurry out of nowhere #i mean its not that blurry but you get it #and it hurts from time to time #plus i got a bump in my eye since august that didn’t go away with eyedrops and treatment #so now i need surgery and it may have possible scratched my cornea #fuck ehlers danlos #ehlers danlos syndrome #astigmatism #ehlers danlos things #eds zebra #spoonie #spoonie things

[faraige]

My New Traumatologist, starting to move my arm gently: How often do your shoulders dislocate?

My New Traumatologist: Ah... It dislocated.

#the face he made #he had barely finished the question and my arm was in what's supposed to be a normal position #it just dislocated and I didn't move a milimiter #this poor man's face #hypermobility #hypermobility syndrome #shut up faraige #thinking how to bring up the possibility of ehlers danlos tests #but fr when he said that I almost asked 'how many times a day? idk. how many is A Lot?'

[g0refield]

i’m really using tumblr nowadays as a way to process and accept my chronic illnesses, and it’s very helpful <3

#eds #ehlers danlos life #ehlers danlos syndrome #idiopathic hypersomnia #adhd #possibly pots?

[plushslug]

The swelling in my elbow has gone from soft and watery to firm. Does this mean anything?

Please reply if you know bc the internet is telling me nothing. Even if we've never interacted before and u feel weird about it. Idc tell me plzzzz!!!! Tysm <33

#rheumatoid arthritis #arthritis #RA #eds #hEDS #ehlers danlos syndrome #hypermobile ehlers danlos #hypermobile eds #cripplepunk #cpunk #adding every tag possible to get answers lol #original content

[sjweminem]

latest fun dennis life update i was in the ER till 1AM last night bc that evening my mom found me having a TERRIBLE seizure in my room and not to get all serious on hoebius.tumblr but bro let me tell you i cannot even BEGIN to articulate the absolute fucking terror that is sloooowly waking from that state in a hectic ambulance and ER when you can't even speak any words or recognize your own mom or know your name or literally just anything at all in the world

#my whole body hurts so bad it's way worse having seizures AND ehlers danlos syndrome #this was the 3rd POSSIBLE seizure and the very first witnessed one. aside from the 42 ECT ones lol #i'm seeing my neurologist in an hour but i have no known seizure disorder so that kinda complicates treatment #OH BUT ANYWAYS THIS MEANS I CAN'T GO BACK TO ECT I'M GOING TO DIE