Missing Life

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Missing Life

Missing Life

@MissingMELife

Bedbound, very #severeMECFS, POTS, MCAS. No life. I'm a ghost in my life, forgotten. Keep Fighting, share awareness. https://t.co/ZyVdteb7K5 #millionsmissing

Bed Katılım Mayıs 2015
198 Takip Edilen67 Takipçiler
Missing Life
Missing Life@MissingMELife·
@NobleRingleader You're right. I'm just so afraid of missing my last chance. But there's nothing I can do about it anyway, I shouldn't crash me over this too.
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GardenRebellion 🎗️
GardenRebellion 🎗️@NobleRingleader·
@MissingMELife Relax about that. We can’t do everything. It’s a bonus, if you get to it. And if you don’t, the world will turn for another day. 😉
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Missing Life
Missing Life@MissingMELife·
I've wanted to collect donations for aid for years, but for various reasons I never did. I didn't accept any help. Then I decided to do it. But apart from 2 times, I couldn't share in Christmas month. I missed the years best opportunity, but I just didn't have the strength.
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Missing Life
Missing Life@MissingMELife·
#wunschnachten2025 es ist zwar keine Amazon Wunschliste, doch es ist fpr nixh nicht weniger wichtig. Ich wäre über Last Minute Hilfe sehr dankbar.
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Missing Life
Missing Life@MissingMELife·
Ich leide an sehr schwerem #MECFS, #POTS, MCAS etc. Ich bin an Haus und Bett gebunden, ertrage kein Licht, leide an starken Ganzkörperschmerzen und werde nie wieder Erwerbsfähigkeit sein. Armut und Behinderung ist ohne Ende. Ich wäre froh, wenigstens manche Hilfsmittel irgendwann
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Missing Life
Missing Life@MissingMELife·
very severe #MECFS, #POTS, MCAS, etc. I am housebound, bedridden, cannot tolerate light, suffer from severe full-body pain, and will never be able to work again. Poverty and disability are endless. I would be happy to at least have some assistive devices someday. Unfortunately,
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Missing Life
Missing Life@MissingMELife·
Little things I miss*: Having an Advent calendar & the anticipation of counting down the days until Christmas. There's nothing left to celebrate or look forward to. Every day is darkness and loneliness. *in addition to the great losses #MECFS #severeME #POTS
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Missing Life retweetledi
Hyperfocusdeepdiving
Hyperfocusdeepdiving@Hyperfocusdeep·
"Manchmal dachte ich: wenn ich all die Energie, die ich in Formulare gesteckt habe, in unsere Familie hätte stecken dürfen: wie viel leichter wäre unser Leben gewesen?"
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Michael R Scoma MD
Michael R Scoma MD@DrMichaelScoma·
Craniocervical instability (CCI) and atlantoaxial instability (AAI) Craniocervical and atlantoaxial instability can lead to neurovascular or brainstem compression thereby contributing to the neurovascular as well as autonomic dysfunction of Long COVID + ME/CFS + MCAS.
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Mark Wright
Mark Wright@markeology·
me/cfs, POTS, MCAS, etc folks: I've been asked by several people what my Rx protocol is that has helped take me from being severe (bedbound almost 24/7 for about 2 years) to now being closer to moderate (4-6 hours out of bed most days). I've had me/cfs since 2018. I've been a patient at the Bateman Horne Center for a few years now, and this is everything they currently have me taking. It's obviously custom tailored to me, and what works for me isn't going to work for everyone, and I'm incredibly fortunate that I can afford all the over-the-counter stuff they tell me to take, which is ghastly expensive. In addition to everything listed below, I have a chest port through which I receive a liter of saline every morning, which helps greatly with my POTS.
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Missing Life
Missing Life@MissingMELife·
I've been wanting to write short posts for months, but I always fail. I was thinking of individual posts about the little things I miss in life. Not the big things, the small ones. I can think of plenty about autumn/ Christmas. I almost missed them. That's something I miss too.
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Dani
Dani@Daniisfeiliab·
Manche Leute wollen einfach immer noch nicht verstehen, dass sie nur einen Unfall, eine Krankheit, einen Schicksalsschlag oder eine Firmeninsolvenz davon entfernt sind, ins Bürgergeld zu rutschen.
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MightyMermaid
MightyMermaid@MightyMermaid87·
Wünschte es gäbe irgendein Medi gegen die höllischen Schmerzen im Crash 😭 #PEM Die Nervenschmerzen in der Leiste kann ich betäuben, aber gegen #MECFS Gliederschmerzen hilft absolut fcuking gar nichts. Es ist unerträglich. Und alles nur weil ich baden musste. #Hygiene #severeME
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