Ehlers Danlos - 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

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”

The problem with being chronically ill is that when you become more sick, with more symptoms, people do not understand why its so upsetting.

"But weren't you in pain before?". Yes but this is a new pain that I haven't dealt with before.

"I thought you already had stomach problems?". Yes but this is a new symptom of it that scares me.

"Arent you used to this by now?". No, and I never will be.

Symptoms that have been had for months or years are hard enough to manage in the first place. Developing a new one is scary, and trying to find ways to cope while still juggling everything else is even more so. We are allowed to be upset at our symptoms progressing. It doesn't mean it wasn't bad before. It just means now its bad in another way we arent familiar with. And that sucks.

I think the root of the whole “internet pathology problem” really is just people with mental or physical illnesses either accidentally attributing normal human behavior or problems to ones caused by illness(es) or that the genuine human problem is greatly amplified by their illness(es)

For example sometimes I genuinely do not know if my joints are aching because I’ve just overdone it or if it’s because of my EDS

On our main I’ll often ask questions and tag them with DID tags because I THINK that it’s the root cause and it may not be at all

I’m not sure there’s anythingthat necessarily needs to be done about these things, I think we’re all not sure of most things because every new moment is somewhere we haven’t yet been and that’s okay

Having chronic pain is like so funny cause I'll be sitting here doing maths and all of a sudden: BOOM joint pain, like help? -Hya