#possible heds
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Hello Tumblr,
Itās been a while. With this whole tiktok ban happening in the US and everything being so up in the air I decided to return to my roots, as the millennial I am.
How have you been? Iāve been through a lot this year but Iām totally obsessed with The Empyrean series and other romantasy books while Iām going through some things.
I have some health concerns but I see the neurologist at the end of this month and the endocrinologist so, little steps.
My pain today is okay and Iām listening to Fourth Wing for the third time in 2025. Iām a little hyperfixated, have some art!
Itās me as a dragon rider.
As someone with POTS and a lot of hEDS symptoms Iām going through the process to get genetic tested for hEDS which has been a thing but itās why I connect so much with Violet Sorrengail and am obsessed with The Empyrean series so much. I see me in her, and I see her in me.
Remember, in the words of Rebecca Yarros, āNot all strength is physicalā.
Have a good Wednesday everyone!
#fourth wing#iron flame#onyx storm#the empyrean#the empyrean series#rebecca yarros#my art#my things#booklr#violet sorrengail#spoonie#pots syndrome#potsie#probably heds#heds#possible heds#chronic illness#actually audhd#disabled
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Pulled a muscle in my neck by just taking a deep breath š« wtf
#problem project#neck pain#chronic pain#chronic illness#disabled#disabled community#disability#actually disabled#chronic fatigue#idiopathic intracranial hypertension#occipital neuralgia#pots syndrome#potsawareness#potsie#pots#postural orthostatic tachycardia syndrome#iih#possible heds#pain and suffering
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starting to get scared that my dream job might never be accessible to me because my health is declining and the time i can spend standing before pain starts radiating from my midback and feeling like i'm about to pass out/collapse is rapidly decreasing and my general joint pain and fatigue is getting worse
all i want is to be a marine biologist and do field work but if i keep getting worse idk if that's gonna be possible
#chronic illness#chronic pain#physically disabled#physical disability#possible heds#hypermobile eds#ehlers danlos#back pain#angry cripple#cripple posting
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Being whatever brand of hypermobile I am - (diagnosis pending) - my fingers bend backwards. All of them. All the time. At the very last knuckle.
Which isn't the best when I'm trying to do literally anything. But especially when I'm trying to create things like drawing or crochet.
I need ring splints, so affordable recommendations are appreciated.
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My doctor listened to me about hEDs which is intriguing, maybe this time will be different? Iām not sure, but there is hope! Famous dangerous last words āthis time will be different-ā
Honestly itās nice to feel one good thing in the ocean that is my mental state. If my mind was a state itād be total upheaval, though thatās beside the point I suppose
(the picture has little to do with this other than he is my silly blorbo I torture for my own angst porpoises š¬ , and yes ik that is a dolphin for all u porpoise fans out there š ( I donāt even know the difference )
#lgbtq community#cripple punk#punk#ftm transition#chronic pain#chronic illness#possible heds#hypermobile ehlers danlos#hope#there is hope#porpoises#blorbo
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Is someone with hEDS willing to message with me so I can get some advice on how to talk to my doctor abt the possibility of me having it? And what I can do on my own to manage my symptoms? If so can you please reply to this post?
#probably heds#possible heds#heds#disability#cfs#amps#pots#potsie#spoonie#slipping rib syndrome#disabled#vasovagal syncope#medical mystery#fibromyalgia#fuck fibro#dislocation#my joints fucking hurt#advice#i need advice
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Okay Iām trying. I am.
Iāve got loads of physio stuff I can do go try and strengthen my joints and reduce pain. Iām going to go to the gym on Fridays. Iām taking supplements. Iām going to try acupuncture again. Iām doing positive thinking and visualisation. Iām eating well. Iām pacing as much as my life allows. (If I paced the way I needed to I would do one thing for one or two hours each week and spend the rest of the time resting. Which isnāt feasible considering I have at least three in person lectures a week)
Iām trying everything. Iām even trying reflexology, which I donāt really believe works. I canāt take it anymore. When my life was just college and home, it was fine. But itās not anymore. Life is opening up for me and not able to take part because Iām in too much stupid pain. I need to not be in pain. I need to be able to walk properly and sit down without my legs going numb. I need to be able to wear a goddamn bra with my shoulder subluxing(I think.) I need to be able to do anything with at least less pain.
I canāt stand this anymore. I just want to live a life and not just be alive in a tiny corner watching it all pass me by.
#chronically ill#chronic illness#chronic pain#pain#chrinic pain#probably heds#heds#heds tag#possible heds
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Every day I wake up and my body isnāt swollen and everyday I realise that doing anything makes my body swell up for some reason.
Is it caused by pots? Should I keep trying to get my doctors to diagnose me heds?
I donāt know! But anyway, sorry body, for continually doing things I know hurt you.
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I finally have an appointment to see a rheumatologist on October 7th. Iām not sure how much they will be able to do but it is at least a step in the right direction.
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I get a lot of imposter syndrome regarding the fact that I'm disabled. I don't have any diagnoses or know what's wrong with me (I have some guesses but don't know for sure) I don't need mobility aids at this point. I am able to hide the fact that I'm disabled and I don't need anyone's help.
But I am disabled. And I am in constant pain.
But I do find myself wishing I was 'more' disabled. Because maybe then doctors would take me seriously. Because maybe then my family would take me seriously. I almost wish I would hurry up and lose more mobility so that I could finally get help
#being disabled and not knowing what it is is so isolating#disabled#disability#invisible disability#undiagnosed#possible hEDS#imposter syndrome#mobility aid#constant pain#i hate doctors#my whole body hurts all the time
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vent post about talking to my mom about getting mobility aids
bruh, I decided to talk to my mom about asking my doctor for mobilty aids, like a rollator or something due being more indepent and going to comeptions for my school, trying to get a job, etc and she goes 'they should have places where you can sit and you have a note saying where you can rest when needed plus you don't want to walk around with a walker' bitch I just passed out because I couldn't sit anywhere without possibly taking a chair that might be used soon, I think I need something, and I explained that to her and she went 'we'll see' with an attitude saying no
Please note I have POTs and Joint hypermobility and possible hEDs
#rae's random thoughts that would go on quotev#vent post#pots syndrome#joint hypermobility#possible heds
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@mg-makintosh: It's chronic pain disorder my dear.
Me: No, I'm a werewolf. Awoo.
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Didnāt realize I asked this anonymously oops. Any way an update:
I still donāt know if Iād consider my pain chronic but I do think I have it. Itās manageable and not all day every day. Some pain has an easily identifiable cause like being sore from dance, standing for too long, or a lot stairs. But sometimes it kind of unexplainable like my shoulder randomly being sore or my wrist in so much pain! For no reason (this doesnāt happen often but still sucks) and my knee can be a bit annoying.
And I saw a comment saying that some growing pains could be as sign of something, and I had the WORST growing pains like whatever arm or leg was affected I could barely move.ļæ¼
So I still donāt know if this is technically āenoughā pain but I digress.
Anyway Iām going to keep doing more research and maybe Iāll come back and update this again later.
(Could just be nothing or hsd as well)
Hi I saw that you have hEDs, my mom think I may have it and I meet most of the criteria but I donāt have pain. So I think I might just be hyper-mobile.
hyper mobility is a spectrum, some people don't get a lot of pain. for some people it takes a while for that pain to develop, but i hope you avoid it altogether. a lot of my pain comes from injuries and my fibromyalgia. if you are hyper mobile it might still be a good idea to seek a specialist to make sure your connective tissues remain healthy. it's still worth seeing a doctor for. best of luck to you, feel free to reach out at any point
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Stain the realest character ever.
#I WISH HE LIVED#THE STAINMIGHT POSSIBILITIES#they are bfs to me ur honor#hed treat Toshi right#FUCK I READ THEIR FANFICS AND AHHH I NEED MORE AND CANT STOP THINKING#also im surprised ppl dont ship them more#my hero academia#boku no hero academia#toshinori yagi#akaguro chizome#all might#stain mha#stainmight
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it makes me sick to my stomach thinking about how spock ā touch telepath, by the way ā touches jim and accepts his touch so freely, almost without hesitation, but denies touch from others. like, okay, you can argue he has his cool vulcan telepathic shields on all the time, but, surely, surely, he can feel jim's mind buzzing, electric and agitated, brushing against his own. like humans brush hands with the one they like.
and he shouldn't think about it, but maybe he does. maybe in the quietness and stillness of his meditation, he feels the ghost of jim's psychic, burning, tingling. like lips feel hours later after a kiss. the memory of it.
but then, he's sure jim isn't even aware of all this. so he keeps touching him and letting himself be touched. and it could mean nothing.
#which could mean nothing#sorry im just#i need#i need them to kiss like RIGHT NOW#they make me SICK#and#by the way#jims out here like huh i wonder why spock isnt bothered by me touching him#hed tell me if he were surely ???!!#what could this possibly mean#thinking emoji#thinking emoji thinking emoji thinking emoji#star trek#st tos#star trek tos#spock#spirk#star trek spock#jim kirk#s/k#spirk tos#late night thoughts
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times yoo joonghyuk got a little silly with it:
when kdj was going through it in peaceland/during the 24hr vacation and then he turned and looked and yjh was over there chilling making Delicious Food
when he and hsy scammed anna croft that one time
surely he had to have done at least one silly bit to get out of a movie in the theater master dungeon
when he was bantering with hsy over Space Google Docs during the epilogue
when he was beating up kdj and said it "was for making [him] eat dirt"
when he used kdj as a surfboard
#add on more if you remember i havent reread it in a while#beyond the possibility of him being an entertaining streamer (ehhh considering what we saw from him in the mia ss) i think hed wear cat ear#headphones and never really acknowledge them. thats his kind of bit to me.#orv
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