Missing Life

Bedbound, very #severeMECFS, POTS, MCAS. No life. I'm a ghost in my life, forgotten. Keep Fighting, share awareness. #millionsmissing

[Missing Life @MissingMELife]

At Christmas, everyone shares their #Christmaswishes/wish lists. I can't celebrate, wasn't even able to properly share my fundraising campaigns, missing my chance. I'm still hoping for a #ChristmasMiracle.

https://t.co/9gsQXgim4m (Glasses)
https://t.co/aJZ9eGB24L (Mattress)
👇

[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.

[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.

[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.

[Missing Life @MissingMELife]

Weihnachten #Wunschnachten teilen viele Weihnachtswünsche/Wunschlisten. Ich kann nicht feiern, war unfähig meine Kampagnen richtig zu teilen, verpasste die Chance. Dennoch hoffe ich auf ein #Weihnachtswunder

https://t.co/aJZ9eGB24L (Matratze)
https://t.co/9gsQXgim4m (Brillen)
👇

[Grieving ME Caregiver @ home 🛌🦋🦠🧠🎗️ @mecaregiver]

Für schwersterkrankte #MEcfs Patienten bedeutet das bloße Überleben, tägliche Überlastung #PENE #Crash #PEM, mit dem Ergebnis dauerhafter Verschlechterung...
bedeutet: Fortschreiten der Erkrankung.
Für die am schwersten Betroffenen mit tödlichem Ausgang. #MEkills

[Hanna @hannapea121]

In den kommenden Tagen startet hier auf X die #hilfekettefuerhanna.

Ich bin Hanna, 36, und seit Jahren 24/7 bettlägerig mit Pflegegrad 4 nahe Berlin - durch das Ehlers-Danlos-Syndrom und dessen Komorbiditäten.
#eds #mcas #mecfs #hopeforhanna

[Missing Life @MissingMELife]

zu besitzen.

Leider kann ich die Kampagnen kaum bewerben und die "Reichweite" kommt hauptsächlich von Bots.

Ich wäre über Spenden und Teilen sehr dankbar. 🫂

#wishlistengel #wishlistsunday #Wunschliste #Hilfe #ichbrauchebitte #Weihnachten #xmas #weihnachtswunsch #Wunschzettel

[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

[Missing Life @MissingMELife]

I can barely promote the campaigns, and the "reach" comes mainly from bots.

I would be very grateful for donations and shares. 🫂

#wishlist #helpinghand #christmaswonder #xmas #christmaswish #wishlist #disability #poverty

[Missing Life @MissingMELife]

At Christmas, everyone shares their #Christmaswishes/wish lists. I can't celebrate, wasn't even able to properly share my fundraising campaigns, missing my chance. I'm still hoping for a #ChristmasMiracle.

https://t.co/9gsQXgim4m (Glasses)
https://t.co/aJZ9eGB24L (Mattress)
👇

[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,

[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

[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?"

[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.

[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.

[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.

[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.

[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