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In the abyss. #mecfs fighter (+9 years) #pots Profile picture
In the abyss. #mecfs fighter (+9 years) #pots
@AbyssPearl
On essaie de tenir le coup 🧠🫀 fighter. survivor. #mecfs, depanx, #pots, allergies & other. I'm one of the millions missing. chronic illness
May 19, 2023 • 24 tweets • 8 min read
I'm so tired of being told : you need to change doctors, find someone who will listen to me etc. Do you know know what it's like in reality ?
First of all. There's no one available. They don't take new patients. Appointments are in months or years. Second money. Third if you have severe mecfs or very severe you can't go and just find a new doctor. 4. i did that for years. No one listened. No one. Or if one did they had no Idea what to do or put me in danger or sent me to other doctors who treated me like not a human. 5. Each travel to another apptmt
May 18, 2023 • 5 tweets • 1 min read
French hospital, june july August 2021
Bedridden paralyzed for months
(Pots mecfs endo migraines vertigo allergies)
they grabbed me so hard that I Lost feeling on my whole arms (3 people)
Losing consciousness as they hold me upright
Heart went above +200 Do you know what they wrote in their paper ? Agoraphobia.

France 2021.
May 7, 2023 • 7 tweets • 5 min read
What I mean is that they saw me before. They saw me sick. They saw me moderate, mild, severe. They heard and witness the dozens of symptoms accumulating for years. They saw it. I didn't know what was happening to me. I checked SO MANY OF the mecfs symptoms for YEARS.
#meawareness doctors even diagnose me orthostatomic hypotension, orthostatic intolerance, then pots. the raynauds, like a lot of these conditions. But they did nothing about it. "It will disappear" Guess what ? It got worse. i even had a test for an illness that causes red blood cells to not
May 7, 2023 • 7 tweets • 4 min read
My doctor dismissed me, my wordsw my symptoms, for 10 years (20 if you take the rest) then didn't see me for a few years.
Fast forward i'm very severe ME almost dying. He came because i've been almost dying for months. After YEARS.

He did ask me why he hadn't see me these past few years.
Well I became housebound then completely bedridden, bedbound, because they didn't listen to me.

This was such an insult.

When I gave him (again) the list of symptoms I've been having and complaining about for 10 years, the reply was so insulting.
May 7, 2023 • 6 tweets • 2 min read
There's a lot of people with severe and very severe ME. Please consider them. Don't forget about them, about us. It's not just 10 people. It's millions of us. Missing. Here but not really here
We do exist. There's so many of us

#MyalgicEncephalomyelitis #MECFS #severemecfs #pwME the representation lacks a lot of the reality of the numbers, the %, the reality of severe and very severe people with #MECFS