Ugh the frustration that I know every person with FSHD feels. When you’re doing something, like hanging up Christmas lights for example, and you go to reach your arm up to hang one strand and you just can’t reach. So you try again and extend your arm as much as you can but you just can’t get there and then BOOM all of the sudden you’ve slipped and fell off the chair and onto the ground. & just like that I’m sitting on the ground fuming about the fact that this just happened.
It happens almost every day. You’re reaching for something, leaning over, or even just trying to step over the rug. It’s so easy just to fall and hurt yourself. It’s just something that happens that honestly, you can’t really do anything about. You can try to be more careful, but then you forget that you’re supposed to be careful, and you’re on the ground again.
I hate this feeling. You just feel so useless. You can’t even do the simplest tasks without your FSHD f’ing it up. These are the times I really just wish I could get rid of this disease. I’ve had multiple dreams where I don’t have FSHD anymore and it’s just such an amazing feeling, and such a tease. I know that things could be worse, but it just sucks that every single day, all day, I can feel the affects of FSHD.
I may put up a front that I won’t let FSHD stop me, or that it doesn’t get to me…but it does. & thats okay. Were allowed to feel upset about something like this; we can’t just pretend its not affecting our everyday lives. If you have FSHD, just know that most days it’s going to suck, but there are so many other people facing the same obstacles as you. Sharing the low points in life will help other people to understand your struggles. Don’t let it get to you, but always feel free to vent. Thats all I have to say for now 😉