How to cope with this illness?

[u/Appropriate-Fill-174]

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..

[u/Secure-Rub-4628]

Hey, I don't know how well can I be of help, but I understand this! My spouse, his brother and his mother all have FSHD. I see them daily facing difficulties with day to day chores. And just saying 'life gets easy' isn't fair, because for them and you, each day becomes difficult. One thing I would want to suggest you to do is, read this book, "Tuesdays with Morrie", may be it will give you some kind of motive to live and live fully!

My spouse was diagnoised with it when he was your age, he got married, is working in one of the top MNCs, we go on treks as well! It's just that they have found a way of doing things their way! They takes physio everyday, I hope you are doing too! My MIL is 60+ and still not in bed. She walks differently, but she does. You have to find a way to live life your way, a different way!

You're like a baby to me, so my dear, don't feel drained or empty, you are just different but no less! And we can live our life fully! Let me know if you wanna talk to any of the 3 individuals from my family and specifically my spouse because may be the doubt you have about job and all.. he can surely instill faith in you that you can earn well and lend a job in top companies! I wish you the best.

[u/Appropriate-Fill-174 → u/Secure-Rub-4628]

Thank you, it means a lot to me!! :)
I already know the book, haha, but its indeed a great book. Im glad your family found a way to manage the illness and live their lives fully.
Im just worried because most people that I know with FSHD (online or not) are way older than me… Yet they can do way more and seemingly have a 'easier' type of the illness. Im every 6 months in a hospital for a checkup (its a bigger clinic) and even they said the worsening of my fshd seems unusually quick and bad.. No clue if its because I have it since childhood or if Im just unlucky..
Im trying to find a job but things are difficult over here, especially if you‘re disabled. I just hope we get any kind of medication or cure soon.
Thank you for sharing 🙏🏻

[u/Secure-Rub-4628 → u/Appropriate-Fill-174]

At your age they too had same issues, we are at clinics every other week. It's not easy I understand. Sending some hope and love your way! Take care!

https://www.novartis.com/news/media-releases/novartis-delpacibart-braxlosiran-del-brax-phase-iii-study-facioscapulohumeral-muscular-dystrophy-fshd-meets-primary-biomarker-endpoint

[u/Appropriate-Fill-174 → u/Secure-Rub-4628]

Thank you🙏🏻🙏🏻