Hypermobile Spectrum Disorder - Tumblr Posts
Any tips for getting an Ehlers Danlos Syndrome diagnosis??? Several of my docs have suggested that I have it but no one has actually done any tests pls help y’all. I’m sick of asking and getting nowhere
A paraphrased conversation between my mom and I
Me: “I couldn’t go to class today because my disability is causing my joints to be too unstable for what we are doing today plus my pots is really flairing”
My mom: “ you know I don’t see you as disabled, you should really stop thinking about disability and start thinking of ability or different ability”
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EDS girly here! That happens to me as well. I was told during my evaluation for my diagnosis that it’s a sign of EDS. Not sure how common it is within the EDS community, but it definitely is a sign
hihi question for anyone who sees but especially hypermobile people and people with any form of EDS/HSD
is it normal (as in not a sign of hypermobility) to see your joints move when you pop them? it doesnt happen with all of my joints but the ones i can think of right off the top are my thumbs. everytime i pop them you can see the joint/bone move through my skin and pop upwards. theres no pain or anything but everyone who sees it looks disgusted lmao so i wanted to see if that was abnormal or they just dont pay attention when it happens
(ill add i believe its happened with my shoulders as well, and my hips but its harder to see there because im fat)
(also also i specify eds not just because of this, my dr wants me tested for eds due to a large number of symptoms, this is just one i noticed recently)
Guess who possibly has hypermobility spectrum disorder. 😜
Bruh I had my dietitian appointment that I’ve been waiting 6 months for just to get told to go back to the gp bc it’s “not a food issue”
YEAH NO SHIT LADY
Literally everything I eat makes me feel sick / throw up and or other really fun bodily functions that I don’t want to even think about
I had to fill out so many forms of invasive and incredibly personal information about my body and the reactions it had, for this lady to NOT EVEN LOOK AT THEM
She saw I filled out the food diary (everything I ate made me sick / ill / uncomfortable) but told me that I will still getting the nutrients I need despite it making me so sick so I should continue doing that
The only reason that food log was filled out our properly was because I was told to, otherwise it wouldn’t be
She said that because I have nice skin (I have hEDS my skin will always look a certain way because of this condition) and the fact that I’m not malnourished (and am not underweight) that there’s nothing wrong with me
So great. I’m back to the start, triggered (she told me my weight even after I asked her not to) and told me she sees sicker people then me and therefore it’s not a food issue and I’m fine.
So yay. I’m completely fucked.
If anyone has any advice or suggestions I would love to hear them because I’m desperate at this point.
Ngl just putting this online makes me feel like shit but I need the help:
Any donations help me so much it’s actually ridiculous, I also draw digital art and have commissions open in my DMs!
Again this suck ass that I have to turn to strangers for help but here I am because I’m desperate :)
[share around my page and gofundme if you want reposts are appreciated]
Something that’s always bothered me about being chronically ill is how my parents don’t try to listen
they pat my legs and ask me when I’m getting rid of my wheelchair, like never Zoe I can physically only cope for 15 minutes a day without pain walking
The researched my condition and told me I don’t have it really, that I don’t look the part, my body is falling apart and my family are waiting for me to get better
I’ll never get better that’s the thing that they don’t understand
[check out the gofundme in my pinned post to help me get a new wheelchair!]
Okay so for context I was told I don’t have pots right
But I’m hooked up to a heart rate monitor and my sitting bpm is around 75 (sometimes it dips to 44 but that’s a separate issue)
When I stand up it gradually goes up to sit in the 120-30 bpm but if I don’t stand up carefully it can go to 160 bpm
I don’t know what to do about this because either I’m in a cold sweat bc my heart rate is 45 or I’m shaking bc it’s 160
At this point I’m a little scared (I thought I was dying for a hot minute when my bpm stayed at 140-60 for a whole hour (I watched the entire x men movie in this time)
Any advice would be appreciated
Hi tumblr, I really need the help right now and I’m desperate
I’m a disabled, chronically ill university student in the uk
due to my various illnesses and disabilities I am unable to work and have no support from my family in regards to my disability
I cannot work and my mobility aids are broken and unfit for long term use
so I’m coming to tumblr once again to ask for help with finance, I’m really sorry to ask strangers for help but I’m desperate
Please share around, reblog or donate to help me, please any little helps
