Romi

LongCovid Recovery ❤️ Insta: romiwithme

[Romi @FreyRomina]

I enjoy every day in which I have fewer symptoms and can live somewhat normally❤️ #LongCovid #MECFS

[Romi @FreyRomina]

@itsmorganariel Only those who know bipolar diseases know how a person can change from one day to the next. My dad suddenly became aggressive and did things he would never do in his life. He regrets it to this day.

[Romi @FreyRomina]

@ElEmirr__ him something he would NEVER have done in a healthy state! He was a completely different person. To this day he can’t forgive himself for what he did 😔This disease is not easy, especially hypermania…

[Romi @FreyRomina]

@ElEmirr__ Being bipolar isn’t an excuse, but mental illness can make someone act completely unlike themselves. My father is the calmest person I know, but after a depression and too much medication, he became manic and extremely aggressive. He even attacked my mother and I was scared of

[Romi @FreyRomina]

@CK65375 @Karl_Lauterbach @Karl_Lauterbach wir brauchen endlich Hilfe!!!😢

[Romi @FreyRomina]

@CK65375 @the_real_prAsco @Karl_Lauterbach @Karl_Lauterbach

[Romi @FreyRomina]

@mecaregiver Aber das ist doch auch schon länger her als die zwei BC bekommen haben?

[Romi @FreyRomina]

@TweetingTimo Ja mein Körper fühlt sich dadurch weniger „schwer“ an. also ich finde es hilft gegen Fatigue und ich habe mehr Kraft .

[Romi @FreyRomina]

Warum hilft mir Ibuprofen bei #LongCOVID und #mecfs? Also mein allgemeiner Zustand verbessert dich dann

[Romi @FreyRomina]

@AbyssPearl Me too😍😍😍

[Romi @FreyRomina]

@iman_560 King von ❤️

[Living Ghost @I_need_a_razor]

I fuckin hate waking up to this disease

[Romi @FreyRomina]

@muttalipguel @HaveFun75463848 Ist doch ihre Entscheidung wenn sie das teilen möchte.

[Romi @FreyRomina]

@MastcellMadness @bellaTati11 Genau

[Romi @FreyRomina]

Mama hat grade erzählt, dass die Tochter ihrer Arbeitskollegin „erkältet“ war und seit Wochen komplett schwach ist „und einfach nicht mehr kann“ jetzt war sie beim Arzt und er meinte: Achwas bei so einem jungen Mädel(25) macht man nichts, machen sie Sport. #mecfs #LongCovid

[Romi @FreyRomina]

Sie kam verzweifelt nach Hause und sagt sie schafft es einfach nicht Sport zu machen, sie ist zu schwach. WANN WERDEN WIR ENDLICH ERNST GENOMMEN? #Gaslighting

[Romi @FreyRomina]

@klausholetschek Danke 🥰

[Sarah Buckel @sarah_buckel]

TW Abschied/Tod

Ich möchte mich kurz - schmerzlos geht nicht - öffentlich verabschieden, weil mir hier viele über die Jahre eine große seelische Stütze waren!!

#lastdays #euthanasia #MEkills #farewell (very)#severeME #POTS #notjustadecicion #greatestMEdicalscandal‼️

[Lisa @echtLisa]

Heute ist ein guter Tag um mich (& ich denke ich spreche für uns alle) bei der Person zu bedanken, die mir am allermeisten Hoffnung gibt:
✨the one and only @C_Scheibenbogen ✨

Ich möchte nicht wissen, wie viele Hürden Sie überwinden mussten, seit Sie sich ME/CFS gewidmet haben.

[Dirk Paessler @dpaessler]

A life-changing experience: 18 months of LongCOVID with no cure in sight. I have never fully recovered after my first COVID infection on Dec 10th, 2023 and would describe my daily power levels at 30-40% of my earlier "me" - on good days.

Getting a chronic illness like LongCOVID is life altering. Many things in my life have changed, especially everything that strains my body (physical work, sports) or my mind (social events, deep work). I have 2 phases of 2-3 hours in the day when I can schedule appointments, Zoom calls, light work. These must be embedded in phases of rest and relaxation plus an extended non-negotiable siesta. Sport isn't even a question. If I cross my daily limit, I will get a PEM-crash the next day, which can go on for days or even weeks, and can worsen my baseline status. PEM needs to be avoided at all costs.

I have read every important publication about this, worked through hundreds of medical papers. I have even co-authored two papers myself. The tough truth and the result of the international ME/CFS and LongCOVID conference in Berlin a few weeks ago is: today, there is no curing medical intervention. None! We have some drugs that help cope with symptoms like palpitations, pain, headaches, MCAS, POTS and others. But apart from that, my only hope is that my body gets rid of this status on its own power sometime in the future - which can take years. At least over the last 6 months, there wasn't much of an improvement.

In the group of longhaulers, I am not even a bad case. I can have quality of life, even though I have to say NO to so many things (which stings every time). There are many people who are much worse off than I am, especially the people who have worsened to ME/CFS. These conditions can become an existential problem for most people, because we cannot work normal jobs anymore. For sure, the relentless entrepreneur who (co-) founded 12 companies in his life and who built a global software company with hundreds of employees isn't there anymore.

18 months have given me time to adapt to this new life, and I am trying to make the best out of it. But it will never be acceptable. As a society, we have to invest more into science and drugs to help LongCOVID patients (one million just in Germany)!

PS: Your risk of being stuck with LongCOVID after your next infection is approx. 1% for most people nowadays (it was approx. 6% for the first COVID infection in your life). Stay healthy! Protect yourself, at least during waves.

[Romi @FreyRomina]

Hat jemand Erfahrungen mit Medikinet bei #MECFS #LongCovid?
Nebenwirkungen?
(Ich weiß es kann gefährlich sein, bin aber ein Mensch der alles ausprobiert)