Impressionen von den LiegendDemos in Berlin, Hamburg, Kassel, Stuttgart und Fulda sind jetzt auf unserer Website zu finden.

Hier geht´s zur Bildergalerie: https://buff.ly/6rdNKJ1

Ganz herzlichen Dank an alle Beteiligten und Helfer:innen! 💙

#LiegendDemo #MECFSAwarenessDay #MEAwarenessDay #MECFS

Spring 2021. A phone call. I still remember it. What I learned from it still scares me.

At the time, I received quite a few phone calls. People inquired about an online #hamRadio license course I was about to start. This call was one of those.

It was also different. The caller provided me, the friendly listener, with a first-hand account of long COVID.

In four years since, not enough money has been spent on research of that.

See @AnAutieAtUni's post 🧵 and #MEAwarenessDay generally.

If you’ve wondered why I’ve been so quiet, well, I don’t have the energy to do much besides survive. I have ME. I’ll need to lie down to recharge my battery for half an hour after creating this post. Not looking for sympathy, but I wanted you to know.

#MEAwarenessDay
#MillionsMissing

Today is #InternationalNursesDay, chosen because May 12th is the birthday of Florence Nightingale, the founder of modern nursing. What few people know, however, is that later in her life Florence Nightingale suffered a debilitating disease that often left her bed-bound and suffering from crippling depression. Though the cause of her illness has never been confirmed, and there are many hypotheses about what she may have suffered from, her symptoms also echo what we now call ME/CFS; Myalgic encephalomyelitis/chronic fatigue syndrome. That's why today is also #MECFSAwarenessDay.

I have ME/CFS. It's been a major part of my life for almost a decade now, even though I wasn't "diagnosed" until about four or five years ago. My world has gradually shrunk, and now I rarely leave the house, and often become overwhelmed by small things like social visits or showers or the slightest amount of exercise (like watering my plants or washing some dishes). I rely on my husband to care for me. There was no inciting "illness" or "event" that I can definitively trace this disease back to; I just slowly, gradually, over time, got worse until I was functionally disabled. There is no cure, and treatments only manage the symptoms, but don't relieve them. Most doctors have no idea how to deal with patients like me. Every year I get steadily worse through no fault of my own, and my world shrinks further. It's terrifying.

@mecfs #mecfs #ChronicIllness #MEAwarenessDay

Today is M.E. awareness day.

I was diagnosed with M.E. and P.O.T.S. in 2020. Prior to my diagnosis I was a seagoing worker in the arctic, an avid backcountry hiker and a busy musician in spite of both severe PTSD and fibromyalgia.

The summer of 2019 I got sick while working up north. It progressed to a terrible lung/strep infection. I was treated four times following that for walking pneumonia and became sick with another lung infection in late 2019 after travelling in Vietnam.

I kept trying to push through my exhaustion, returning to sea in spite of my symptoms. We live in a society that believes your value is directly tied to your work and productivity. It's a cruel and ableist lens to view human worth that way.

My body has never fully recovered. M.E. has been a rollercoaster of ups and downs and I feel like I've missed out on so much in the last five years of my life. I have tried to go back to some sort of career several times since then only to find myself in worse shape. These last few months of deep rest are the first time I've managed to find some balance with my illness. Sometimes I use a cane. Sometimes I don't. My mobility shifts like the wind. Please know that you aren't alone and many people with long covid may also be experiencing M.E.

It's easy to miss our existence. We just aren't there anymore, and it shouldn't have to stay this way.

#millionsMissing #meAction #meAwarenessDay #longCovid