#erythromelalgia

[this-teen-is-on-fireee]

Moment of silence for all the heat sensitive disabled ppl as the world actively tries to kill us this summer

[huckleberrysigh]

you and me both pal

[ifihadmypickofwishes]

So my therapist has suggested that I find a volunteer opportunity to offset the powerlessness and anger that has replaced my ability to tolerate distress post-The Year(s) of Which We Do Not Speak. We are immediately hamstrung by the fact that I can't handle crowds and can't be outside during the summer. Please send help.

[partycityistotallyofficailguy]

I hate being disabled and chronically ill but. The lore. My lore it’s sick. My lore guys.

[themadornithologist]

Disabled people deserve better, and they do NOT need to justify to you why.

[flutespells]

Pre berry bliss concert vs. the aftermath … projecting my chronic pain onto meadow bc i love her

I have this awesome condition called erythromelalgia where i experience excruciating burning pain throughout my body but primarily in my feet. left pic is my setup on particularly bad pain days. the only relief i get is by elevating my legs above my heart which can take up a good chunk of my day lol. i also have peripheral neuropathy (nerve damage in my feet) and as u could imagine they are NOT a fun combination to have! luckily ive experienced less of these really bad days as of late and the pain has been pretty manageable but my mobility is still limited bc of it + other factors.

i used to love dancing before my health took a downward spiral so meadow will have to experience the same thing bc she is me and i am her 🙂‍↕️

[inkdandimpulsive]

Shout out to disabled people who are, ya know, existing with symptoms - whatever they may be. Who are exhausted/fatigued some (or all) days. Who are in pain. Who live in a world that doesn’t understand them, a world that isn’t built for them.

I hope you have the time to cuddle your favorite stuffed animal. I hope you watch an amazing episode of your favorite show. I hope you meet a doctor that smiles and sees you and works with you. Much love to you all.

[a-dinosaur-a-day]

G-d/The Universe: welcome to the world, Meig! you're going to be obsessed with dinosaurs me: okay cool G-d/The Universe: you're going to be aware of mass extinctions before you understand death me: is that a good thing- G-d/The Universe: and as such, you'll realize the true dangers of climate change before you start school me: that doesn't seem appropriate for a 6 year old to kn- G-d/The Universe: you also have PCOS and erythromelalgia. you'll basically only be comfortable at temperatures at or under 68F/20C me: but wait the climate is getting warmer so am I screwed or- G-d/The Universe: and you'll spend your whole life watching all the people older than you completely ignore and or trivialize this issue in the favor of infinite growth and capitalism. Also, everyone around you will act like you're crazy for being warm all the time. Have fun! me: oh for FUCK'S SAKE