I've had enough. Time to be that bitch!

#POTS #MedicalGaslighting #dysautonomia #hEDS

"The proper way to talk about what I’m doing is to say that I use fitness trackers to “pace.” #Pacing is an energy management technique that involves balancing periods of activity with periods of rest to avoid physical and mental overexertion. The idea behind the practice is that by carefully planning and prioritizing the tasks and activities you do throughout your day, people with energy-limiting conditions like mine can avoid falling into a cycle of repeated crashes or worsening symptoms. Pacing isn’t a cure or even a way to improve your overall condition, at least not inherently. But for many people with these conditions — folks with #MECFs (#LongCovid or formerly referred to as “#chronicfatigue”), #POTS, #fibromyalgia, or even #Parkinson’s, for example — pacing can make life a little more predictable."

https://www.theverge.com/features/889835/fitness-trackers-chronic-illness-visible-whoop

It’s Long Covid Awareness Day.

This year marks 3 years of living with it for me… and my health continues to be precarious.

I do my best to walk through life in the present and to manage what I’m able to - while relentlessly advocating for myself in the Canadian* medical system.

If this sounds like you too… know that you’re not alone. I see you.

#LongCovid #MECFS #POTS #LongCovidAwarenessDay

*added for clarity. I also do not currently have any spoons, I’m minus spoons and bed ridden, so I cannot reply to DMs.

Hier nun die deutschsprachige Fassung:

Von Otto Kolbl und mir:
Warum traf uns #LongCovid völlig unvorbereitet? Weil die Langzeitfolgen nach der #SARS-Epidemie von 2003 ignoriert und psychologisiert wurden. Parallelen zu #MECFS, #POTS, #SFN usw. wurden übersehen. Warnrufe verhallten ungehört.

https://ottokolbl.medium.com/long-sars-wurde-ignoriert-long-covid-9a8fe8742024

2026_2_16 “Botox for Migraine” Injection Set #2, and 5 Hour Drive to/from Appt

https://www.illmarks.com/2026_2_16-botox-for-migraine-injection-set-2-and-5-hour-drive-to-from-appt/

#2 #art #bodyHorror #bodyMapping #bodyart #bodymapping #chronicIllness #chronicIllness #chronicmigraine #disability #disabilityart #DisabledArtist #eds #healthcare #heds #longCovid #longcovid #mcas #medart #medical #medicalArt #migraine #MillionsMissing #neurology #POTS #pwLC #pwme #queer #QueerArt #QueerArtist #SciArt #SciComms #trans #transArt #TransPride

So I go to the doctor with documentation and data (self-administered NASA Lean Test, showing textbook POTS), and also same data when tested during the appointment, yet got sent away with nothing.

The doctor said he acknowledged that the physiology and symptoms matched, and that I'm clearly being affected by it daily, but he wouldn't refer me anywhere, because "there's no point, since there's no treatment within the Danish system", which is a straight up lie.

So no referral to tilt table test, no cardiology, no neurology. Nothing... This is the 2nd time I've tried raising this issue - which at this point is causing me to have to lay down for hours a day, to recover - and both times I've been rejected (and both times by a man).

I'm at a loss at this point. I can keep doctor hopping, to try and find someone who will actually help me, but every time I switch, it counts against me.

#POTS #PosturalOrthostaticTachycardiaSyndrome #MedicalGaslighting #MedicalAbuse

By Otto Kolbl and me:

Why were we so unprepared for #LongCOVID? Because long SARS was largely ignored and psychologized. Researchers failed to make the connection to #MECFS, #POTS, #SFN, etc. — despite having all the data.

German version coming soon!
https://ottokolbl.medium.com/we-ignored-long-sars-and-let-long-covid-suffer-the-same-fate-336372fe39d7