Heds - Tumblr Posts

Temperature regulation issues suck so much and are so weird because it does not matter how many layers I put on, if the skin is exposed it will be cold. My fingers are like a full 20 degree difference than my wrist that's covered by my jacket. just move the warm blood over there omfg

Lads how do I explain to my doctor that due to my hyper-mobile-chronic-pain ass can’t sleep due to pain the only way I can sleep is in the family guy death pose?

Like pov me asleep:

Any hEDS folk got any tips for subluxation?

I’ve never dislocated anything but just got told that I likely have hEDS and am realising a few things.

Sometimes my joints make a click sounds and hurt like a bitch and feel really weird. Kinda floppy but sometimes stiff depending on where it is. I didn’t even realise subluxation was a thing. Is this subluxation??

Usually I just wiggle the joint around a bit and wait for it to click back. If it’s causing loads of pain then I just ignore it and wait for it to go away, which is usually does when I accidentally move weirdly and then it clicks back where it’s supposed to.

I have a feeling that that’s not how you’re supposed to deal with it but don’t know any alternatives.

Any help?

Going to a disability shop tomorrow to get some compression gloves, ring splints and other stuff!!! Very excited XD

I’m gobsmacked that I didn’t know this was because of my hypermobility and it isn’t just an everyday normal thing for people wtf

finding out that non-hypermobile people don’t get food stuck halfway down their chest constantly is baffling to me. like wdym you can eat a sandwich and it doesn’t just decide to stop there

Got my compression gloves! Feels weird but they’re forcing me to not do weird finger things so much.

I think the reason why people want to know what's "wrong" with disabled people is because they want to reassure themselves.

They want you to say you were in a horrific accident or that you have a well known and treatable disease because they think they can stop it happening to them.

They think their health is a given because they aren't a dangerous driver/ an alcoholic/a drug user/obese/an unhealthy eater etc. Obviously this isn't true but it's easier for them to think of it like that.

Until one day they meet someone who did nothing. They're not really asking "what's wrong with you". They're asking "what went wrong" because they think they can avoid it.

So when they meet someone who made all the right choices, who was healthy, who was safe and one day woke up sick and never got better, it scares them because some part of them realises that it could happen to them.

They can exercise and eat a balanced diet and be as careful as possible and it doesn't do a thing and they can't do a thing about it. That terrifies able bodied people.

People like to look for something or someone to blame and they hate it when there's nothing there.

I went outside for the first time in over a month!

I've missed the outdoors so much. Everything is so beautiful. I actually had to close my eyes and breathe in multiple times because it's so overwhelmingly gorgeous out there.

There was water and ducks and trees and dogs and sun and insects and plants and wind and clouds and sky!

I've missed it all so much and I know it'll probably be another month before I get out again so I'm trying to savour the memory right now.

I have a drs appointment on Tuesday to hopefully get evaluated for hEDS yay. I Hope i can get a preliminary diagnosis from her i stg. It would explain so much and then maybe just maybe I’ll be taken more seriously by other docs. Like seriously it would explain SO MANY of my issues like nearly all of them I stg

Y’all, what’s the benefit of getting a hEDS diagnosis? Every Doc I’ve seen has brought up that I probably have it but none will actually evaluate me for it (based on the criteria to my understanding I definitely fit it) and I keep getting told there’s no point in actually getting the diagnosis so they don’t want to do the evaluation. They’ve offered genetic testing which is nice but that shits expensive and I know technically necessary for the diagnosis but if they won’t even do the in office evaluation what’s the point of it (I mean unless I have one of the other types)

Can I claim it for myself? I understand if not since I’m not formally diagnosed but I’m just curious.

Pixel flag divider requested by @mossfrogandratmushroom !

Disability pride flag

I hope you like it :)

Suggestions, tips, and requests are welcome!!! I don't do any NSFW but I'll create for any fandom. Feel free to use this for something if you want. A like, reblog, or follow if you do would be appreciated!

~Parker

might I recommend a heated mattress pad? They’re great for heating your entire back and also allows you to use the heating pad elsewhere

Not enough heating pad for the ouchie so I’m just rolling around like a rotisserie chicken

POTS and hEDS girly here!

electrolyte tablets or packets to put in your water are essential

if you can, try to get Celtic sea salt- an ER nurse recommended it to me when I went in for a POTS flare because it also has other good minerals in it

obligatory drink more water!! I use flavored electrolyte mix to help me actually drink the water (it’s called Mio, and comes in multiple flavors with different uses/purposes, some are caffeinated, others aren’t, some are just for flavor)

find ways to sit/rest throughout the day, whether it be finding ways to make your route around school shorter or sitting at a closer table/desk so you don’t have to walk as far

if you get really dizzy, GET CLOSE TO THE GROUND. if you faint while closer to the ground, you are less likely to injure yourself

you might want to bring up your concerns to you primary care doctor the next time you see them. Just be aware that if you menstruate they’ll probably dismiss it as anemia due to your period

as for the compression socks, they work best if they’re longer, like calf length, but I have ankle length ones that are nice as well

talk to your school nurse or counselor to tell them about your concerns- if 504s are a thing where you live, ask about getting one

Sorry this was so long, but I hope it helps!!

Potsies help I need advice

I'm not diagnosed but I very likely have POTS and I'm in a flare. I have no accommodations or anything since my parents don't really believe me.

I have to bike 30mins to my school, and we have mandatory exercise 3 times a week. How the hell am I gonna survive this?

I have sports socks that are kind of compressing, and I can take salt to school. Is there anything else I can do that might help?

Thank you so much.

So like, does anyone know/could anyone provide sources on if hEDS and JHS are the same syndrome with different names or if they are different?

for my fellow Spoonies, you know those things that feel overwhelming/impossible?

brushing your teeth for 30 seconds is better than not at all.

going for a 5 min walk is better than not at all.

writing two sentences is better than not at all

washing your hair once every second day is better than not at all (sometimes I just wash my hair in the bathroom sink if I don't have the energy to shower).

eating two mouthfuls of dinner is better than not at all.

wiping your body down with a damp cloth is better than not showering.

sitting on the grass just to get some sun is better than lying in bed all day.

sometimes you just gotta tone the Thing down a little.

Occasionally chronic pain comes with a side serving of being able to swallow 15 pills in one go.

officially got diagnosed with POTS today 😎

(and had another physiotherapist take a look at my joints and skin and go 'yeah that's... that's bad and looks suspiciously like hEDS but i dont have the qualifications to say for sure, sorry')

this comorbid disorder sh*t is a pain in my... well, everywhere, but t least i know i'm not misreading my symptom set :) that's a relief at least.

Disability services interactions be like

ds: we can offer a support person, or home help, or some level of assistance!

me: ...but i don't want a support person?

ds: we can offer a supportive person to help you live better

me: i just said i don't want a support person

ds: we can give you home help and someone to keep you company

me: are you completely ignoring me. i want to keep what freedom i have left.

ds: we can offer support person, you can pick them, we don't chose them for y--

me: i want to stay as independent as possible!!!!!! i've already lost most of my life to my disability! i was told you'd help me find ways to be independent. having a person to help me will ruin my mental health because i hate being seen as incapable.

ds: oh.

ds: we can offer a support person!

Pros of Fourth Wing: I don't have to explain what EDS is anymore (most people who've read it or know of it ask me if it's "like that girl/Violet from Fourth Wing" and I can just roll with it without having to educate them)

Cons of Fourth Wing: THE ENDING OF IRON FLAME, FLAY ME, AND FEED ME TO TARIN IM SOBBING

I was reading about fibromyalgia yesterday... We fit ALL of the diagnostic criteria, however, ✨I cannot tell✨ if it's a diagnosis that's given if no other source for the pain can be found or whether you can have another pain source (ie. in our case, endometriosis, PCO and hEDS), that's causing the widespread pain, and a severe disassociative disorder that could be pinned as the origins of brain fog.

Being fair my doctor doesn't really know how my pain got as bad as it did...but like..

is it worth pursuing another diagnosis or is it just not worth it???

Anyone with fibro happy to tell me about their experiences with having a fibro diagnosis?