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Filomena | a mtb girl stuck with me/cfs

@mtb_filo

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◇ Vom Leistungssport zu me/cfs 🩺
◇ mein Weg zurück aufs Bike 🚴‍♀️🏔
◇ Awareness & Reality 💗🫂
◇ one of #millionsmissing
📧 [email protected]

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For all newbies here🤗🫶:
Hey, I'm Filo.
I love cycling and racing bikes🚴‍♀️.
I'm also in love with nature, the mountains and good food🏔☀️🍲.
10 years ago, I found my passion in mountainbikeing💜. I've done competitive sports for 7 years (mtb xco). I loved it and had big goals!

Until my life fully changed in 2025. My diagnosis: ME/CFS! A untreatable Illness. Bit by bit, the cheerful and energetic Filo, became a tired and seriously ill Filo🥴❤️‍🩹.
Although there have been several bad days, I’m still positive and optimistic😌, even though the illness has taken everything away from me.
I’m absolutely certain that I’ll be back on my bike one day. And that’s exactly what I’d like to share with you here🤗. My journey back to mountain biking💗!

#mtblife #racingbikes #xc #mecfs #chronicillness by @mtb_filo

Vom Leistungssport zur Bettlägrigkeit! Was die letzten Monate alles passiert ist...

English is below!🇳🇿⬇️

Von Dezember 2025 ging es schleichend immer schlechter, obwohl ich nicht mehr viel tat. Es hat lange gebraucht, bis ich das Pacing (ein strenges Energiemanagement) verstanden und meine Baseline (ein Bereich in dem der Zustand durch Aktivitäten nicht schlechter wird) gefunden habe.
Im Mai hatte ich einen großen Crash (Zustandsverschlechterung). Man kann sagen, ich war in der Hölle! Ich lag 24h am Tag in einem dunklen Zimmer. Jede Bewegung war extrem anstrengend und ich hatte Schmerzen. Geredet wurde nur das nötigste.
Im Juni wurde es dann in mini Schritten immer besser! Bis ich aktuell sagen kann, ich habe mich von Bell 4, auf Bell 10 zurückgekämpft. Und es wird auch gaaaaaanz langsam immer besser. Die nächsten Therapieschritte sind geplant und mental hat sich einiges verändert. Ich habe ME/CFS und mein aktuelles "Leben" akzeptiert. Ich bin sehr zuversichtlich!!
Sooo viele Menschen sind von der Krankheit betroffen, aber sehr wenige wissen von dieser schlimmen, chronischen Erkrankung! Ich möchte dazu beitragen ME/CFS sichtbarer zu machen, aufzuklären und die Realität zu zeigen.

From December 2025, things gradually got worse and worse. It took me a long time to understand pacing and to find my baseline.
In May, I had a major crash (a worsening of my condition). You could say I was in hell! I lay in a dark room 24 hours a day. Every movement was extremely exhausting and I was in pain. I only spoke when absolutely necessary.
In June, things started to improve, bit by bit! To the point where I can now say, I’ve fought my way back from Bell 4 to Bell 10. Things are getting better, veeeery slowly. The next stages of my treatment are planned, and mentally, a lot has changed. I’ve accepted that I have ME/CFS and my current ‘life’. I’m very optimistic!!
Sooo many people are affected by this illness, but very few know about this terrible, chronic illness! I want to help raise awareness of ME/CFS, educate people and show what life is really like with this disease.

#chronicillness #mecfs #bikelife #xc by @mtb_filo

Was ist Me/CFS??
Scroll through to learn more ➡️

#mecfs #mecfsawareness #wasistmecfs #chronicillness #chronicfatigue

Who learned something new?
Wer hat was neues gelernt? by @mtb_filo

A poetry about missing cycling!🚴‍♀️💜
Instead I'm lying all day long in my room and I'm wondering when the energy will come back to my life ❤️‍🩹🥺.

#mtblife #millionsmissing #xco #mecfs #mecfsfighter by @mtb_filo

1,5 years with ME/CFS!
Life, please go back to how it was before 🙏🥺❤️‍🩹.

#mecfs #chronicillness #wantmylifeback #notrecovered #millionsmissing by @mtb_filo

What's the first thing you would do?

#mecfs #millionsmissing #mtb #mecfsawareness #mtblife by @mtb_filo

#mecfs #millionsmissing #mecfsawareness #chronicillness #mecfsfighter by @mtb_filo

#millionsmissing #mecfs #mecfsawareness #chronicillness #chronicfatigue by @mtb_filo

My new favourite spot in my room makes my life a little bit better 💜😊

#millionsmissing #mecfsfighter #mecfs #mecfsawareness #chronicillness by @mtb_filo

A daily structure with me/cfs!
I have specific times for getting up and going to bed, fixed mealtimes, times for brushing my teeth, and blocks of time that I’ve called ‘free time’.

The plan helps me to avoid feeling bored, it helps me with pacing much better, and it’s also really good for my nervous system!
It’s easier for my family too, because they can plan around those times.

I would definitely recommend, a daily structure 😊!

#mecfs #dailystructure #millionsmissing #mecfsfighter #chronicillness by @mtb_filo

What do you have?

#mecfs #chronicillness #millionsmissing #mecfsawareness #mecfsfighter by @mtb_filo

Die Erkältungssaison hat bereits gestartet. Eine weitere Infektion kann für ME/CFS Betroffene eine Verschlechterung für immer bedeuten. Deswegen helft uns und tragt eine Maske oder bleibt zuhause, wenn ihr krank/erkältet seid!

#millionsmissing #mecfs #mecfsawareness #infektion #masketragen by @mtb_filo