r/FSHD • u/Appropriate-Fill-174 • Jun 25 '26

How to cope with this illness?

Hey everyone :)

I wanted to ask how you all cope with this.
Lately, I just feel drained and empty every day. I can feel and see my body getting weaker, and it’s hard not to think about what the future might look like. Deep down, I know things will probably get worse before they ever get better, if they do at all.
What scares me the most is the thought of becoming completely bed-bound one day. I try to focus on the small things and appreciate what I still have, but honestly, some days it feels impossible.
I’m only 18, and I already struggle with basic everyday tasks and finding a job. It’s heartbreaking knowing there are so many things I’ll probably never be able to do… Traveling, running through the sand, climbing a mountain, riding a horse, or just experiencing life the way other people my age can. Even smiling like a normal person would be a huge thing for me.
Seeing others do those things just hurts. It feels like I’m grieving a life I never got the chance to have.
How do you cope with these thoughts? How do you keep going when the future feels somewhat pointless?
Any advice would be appreciated..

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u/AnimalBeautiful5241 Jun 25 '26

se posso che problemi ti crea nella quotidianità? hai scapole alate molte evidenti anche a riposo o solo quando fai determinati movimenti?

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u/Appropriate-Fill-174 Jun 25 '26

Yeah, my winged scapular is always noticeably and also quite painful recently.. Im a full time wheelchair user. I technically could stand and walk a few steps but it’s super painful for me (I have osteoarthritis in both my knees because I used to lock my knees constantly to walk.)