Sarah Buckel

Ein Ausschnitt aus meinen 28 Jahren voller Leben - erstellt von einem ganz besonderen Freund (@kai_hrmth), gesungen von meiner wundervollen Schwester. Wie oft können Herzen brechen?

In tiefster Trauer und Betroffenheit teile ich, Kai (@kai_hrmth), diese Nachricht

Such wise, important, and loving words in memory of Beth🕊 I hope it's okay if I wish the same for myself too

It makes people like me - carer of very severe kid - feel despondent actually; that I’m not doing enough. When actually, comparing some of these people as similar is reminiscent of suggesting a benign lipoma is the same as an aggressive melanoma…… If you can still kayak while…

I’m less interested in putting down recovery stories than I am in putting them in proper context. The people pushing them have monetized both the false hope they’re pushing and the justified outrage against it.

Can’t believe I have a serious neuroimmune disease with no proper help. No targeted drugs for it just have to live in hell day in day out.

The 5 stages of having abled friends when you get #MECFS/#LongCovid: 1. Sympathy: "Oh I'm so, so sorry!" 2. Bafflement: "You mean you're STILL sick?" 3. Impatience: "OK. This is getting old." 4. Hostility: "What is WRONG with you??" 5. Silence: Because by now they've walked away.

ME/CFS is one of the worst things a human can experience on this planet. In terms of long term suffering and despair, it's in a league of its own. I don't know the reason human souls come to Earth, but ME/CFS destroys any potential reason for being here.

Wie man angesichts von ME/CFS und der Gefahr einer dauerhaften und massiven Verschlechterung, die jetzt schon so viele in die Rollstühle, Betten und leider auch Tod befördert hat, von einer „notwendigen Anstrengungsbereitschaft“ sprechen kann, ist schwer erträglich @DGUV.

2/2 Für den Verein dränge die Zeit, denn zwei der sieben Mitglieder seien bereits verstorben. Nach Vereinsangaben sind allein in Schleswig-Holstein 91.000 Menschen an Long COVID erkrankt, etwa 30 bis 50 Prozent von ihnen schwer.

We need to initiate Urgency and Warp speed development of serious treatments. It is criminal that young people have been abandoned for decades many resorting to suicide.

ME/CFS doesn’t kill you quickly. It erases you slowly—day by day, year by year, until you’re just a shadow of who you were. And the world just watches. Until another name is gone. And everyone moves on. #mecfs #longcovid

I try not to have regrets — obviously — but that’s one I carry deeply. I sacrificed my health, endured hundreds of crashes, for nothing. For no real gain. To a degree, I betrayed myself and this body for the sake of how I imagined others might see me. Very foolish.

The number of people with ME/CFS who have sacrificed their health—knowingly or unknowingly—to meet the needs or expectations of others is likely staggering. What may seem like small, everyday gestures to healthy individuals can be profoundly debilitating for patients, leaving…

"1 S" bedeutet mir Mila zum Abschluss des Tages. Ich darf EINE Silbe sagen. Meine Wahl heute: "awe". Ich habe großen Respekt davor, was Mila - und all die anderen Schwerstbetroffenen - Tag um Tag ertragen. #LearnAboutME #MECFS