Wide awake tonight because I slept until 3:00 PM yesterday and spent a lot of the rest of the day in bed. Just doing stuff on my computer. Had a rough day with #headaches, sound sensitivity, and whooshing in ears from #IIH (high pressure in skull), neck pain, and #fatigue. Lol actually wanted to go back to sleep but headache meds didn't knock me out like they usually do. Anyone else awake? #NEISvoid #ChronicIllness #ChronicPain

A few updates, so I'll post a few times instead of trying to cram them into 500 characters. Had to stop wearing the soft neck collar. It was somehow making the high pressure in my skull from #IIH worse, so my #headaches and the whooshing I hear in my ears sometimes got worse. I was in a lot of pain for a couple of days until my mom figured out what was wrong and told me to take the collar off. Luckily, I have my first #physicaltherapy appointment on Monday. #NEISvoid #ChronicIllness #ChronicPain

[Automatic repost https://twitter.com/dystobot/status/1648544548660862976]

RT @Aaleayha: My daily struggle:
#hEDS, #CCI, #Chiari, #seizures, #Dystonia, #Dysautonomia, #POTs, #IIH #migraine, #asthma, C1-L5 herniated discs, spinal cord compression, #neuropathy, muscle spasms, #chronicpain #sciatica, #incontinence, #RheumatoidArthritis, stiffness, #IBS, #gastroparesis

Today marks Rare Disease Day 2023

🧠 @queer_cir ’s story with IIH can be found in the images

#RDD2023
#RDD23
#RareDiseaseDay2023
#RareDiseaseDay
#LightUpForRare
#IIH
#IH
#IIHAwareness

Image is from lifewithiih

Mijn leven met #IIH...

Een kijkje in mijn leven: voor hen die niet weten wat deze ziekte met iemand kan doen.

Maar vooral om te laten zien dat het nu eenmaal bij mij hoort en we er elke dag het beste van maken.☘️❤️💪🏻

#NationaleZeldzameZiektendag
#RareDiseasesDay

Wer kennt es nicht,die Schmerzen einer #Sinusvenenthrombose die bis in die Füße strahlen, wenn man Wäsche ausschüttelt.
#IIH

Mit ist heute schon wieder ganz oft schwindelig. Kenn ich so eigentlich nicht,trotz Neuro Vorerkrankung. Frag mich ob das von der Corona Infektion kommt. Und ab wann ich mal wieder ein MRT brauche..

Bloss nicht von der eignen Angst verrückt machen lassen. #MECFS #IIH #neuro #chronischkrank

This is a multi-part thread about #autism, #ChronicIllness, #fibromyalgia, #HealthInsurance, and #IIH. Had an appointment with my primary care doc today. Not sure what I think about her. I loved her at first, but I dislike her more and more. I've seen her 4 times. The first time I saw her my mom and I were clear about our frustration with the medical system and explained that if she wouldn't fight for me and help us figure things out, she should tell us then so we could move on.

Lol trying to get some work done on a #usability testing study I'm in while I'm feeling relatively good, but apparently my focus is crap today. I keep finding myself doing other completely unrelated things on my computer. #ChronicIllness brain fog really makes things difficult sometimes, doesn't it? Going to try to force myself to focus since my #IIH, #GERD, or #fibromyalgia could start giving me problems at any time. And usually, when I go down, I go down hard and there's no stopping it.

During this time one of the weird side effects I developed was sudden adult-onset central heterochromia -- that is, my eyes changed color. So strange. (These are both me. My eyes were solid dark brown until about age 28.) The color change is permanent. My vision is back to normal.

#heterochromia #tbi #neuroscience #optometry #iih #pseudotumor #shunt #VisionLoss #CSFleak

Intro. Hi all. Spoonie with sizable herd of zebras. I'm hoping for this to be a place to get important info on COVID and other crises, connect with other disabled people, and grow my advocacy skills. My current focus is to make actionable changes toward the therapy field being less ableist and creating more chronic illness competent therapists. Imma get comfy before posting much but grateful for follow suggestions.
#CRPS #IIH #Gastroparesis #Migraines #Therapy #Disabled #MaskUp #CovidIsAirborne

I have a condition called IIH (idiopathic intracranial hypertension). It is VERY painful. But that's not stopping me! I want to bring art and originality back to film, and though it's excruciating, pain is not the master of my body.

I AM.

#pain #disability #film #auteur #movies #disabled #iih #youcandoit

okay, #introduction!

hi, i’m an ex-librarian, current web/ux person.

honestly usually kind of a lurker, so don’t expect much, but here are some interests that might come up/intersect with yours…
 
#cats #scifi #accessibility #critlib #ux #horror #cooking #queertheory #iih #fatliberation #museums #dc #tucson 
#nanowrimo #art #hearthstone #longcovid #fantasy #dnd #editing #creativenonfiction #radicalmentalhealth

and really all kinds of weird experimental media (both consuming and creating)