Happy #Caturday from Basil
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ImmedicableME
@ImmedicableME@mastodon.online
mastodon 4.8.0-nightly.2026-10-09Former medical librarian now #Disabled by #MECFS, #Dysautonomia/#hyperPOTS, #MCAS, nonepileptic #Seizures, #HEDS, and more. Really, really overeducated for my current career as a couch surfer and bed hopper (just trying to make “bedridden” and “housebound” sound more exciting). Late-diagnosed #ActuallyAutistic. Social awkwardness is my copilot. United States.
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Joined November 06, 2022
Hey, fellow ME/CFS patients: get a sleep study! Especially if you, too have hypermobile Ehlers-Danlos as a comorbid condition, which contributes to airway collapse during sleep.
This time, the sleep study caught both obstructive AND central sleep apnea. My oxygen levels were as low as 80% saturation. This is the third sleep study I’ve had since developing ME/CFS…pretty alarming that the previous ones missed this.
https://www.rthm.com/resources/blogs/cpap-sleep-apnea-chronic-illness
If you’re in the U.S., please consider signing this petition regarding proposed Medicaid work requirements. People with ME/CFS and Long COVID need to be designated as medically frail to be exempted from these work requirements in order to continue to receive benefits. As someone who has moderate ME/CFS, I am homebound and am unable to meet my daily needs without assistance—people who are severe or worse can’t get out of bed. #MECFS @mecfs #LongCovid
Early morning beachcombing in SE Alaska. #Alaska #Crab #Intertidal #Nature #SeaLife
Replying to
@lifewithtrees It’s probably partly pathological demand avoidance—that and executive dysfunction are the downfall of many of us who are neurodivergent.
Replying to
@RickiTarr Distraction. I have TV or an audiobook playing most of the time. Cannabis when the pain pushes me to tears, because it’s the fastest way to distance myself enough from the pain to survive a few more minutes. I’ve used mindfulness and guided meditation when I had more severe chronic pain. Ice, heat, topicals, muscle relaxers, CGRPs (migraine prevention medications), NSAIDs, and lots of anti-inflammatory supplements are part of my strategy as well.
Replying to
@dramypsyd@ohai.social I don’t think seeing an instructor’s/presenter’s face is necessary for me to connect with the material at all. I think most of us are used to voiceover-type instruction and are comfortable with it.
Replying to
@SilverSalmonAK@alaskan.social My daughter lives in Haines and is expressing a similar sentiment. This has been one hard winter for SE Alaska.