The following is a Facebook post from Nicky Williams Dexter. She shared her daily reality and it gripped me. She and I share the struggles of FSHD yet we have different experiences. I’m reposting this with her permission. If you’d like to contact her, she accepts all friend requests from folks interested in FSHD. I encourage all of you to drop her a line of support on Facebook.

Living with FSHD is harder than I had ever imagined….

I used to try and think about my future with FSHD when I was a teen…a teen who already depended on adaptive devices such as a wheelchair…for most people that have FSHD, this milestone is the thing that they dread…

Back then the thing I dreaded most was loosing my ability to drive and not being able to get out of the wheelchair onto the toilet…

Having since lost those functions, I then found out that there is much worse things to deal with than mobility issues and using adaptive devices when ur progressing and aging with FSHD….

About seven years ago I thought that it was an awful place to be in when you couldn’t just lay down on your own… losing that ability is the worst when you are sick, bc the loss to get yourself back up keeps you from ever allowing yourself to give relief to your pounding head and achy body…

Five years ago the digestive issues and breathing issues became overwhelming for me…i found myself in the hospital multiple times and I started to realize that there are things I would have to deal with that I hadn’t even considered when living my life with FSHD…

Now, in this new era of trying to survive with FSHD, it is my diminished frame that is starting to fail me and making me realize my body’s betrayal at every turn…to just be able to put on a piece of clothing and it not engage every nerve I have, sending intense electrical currents and radiating pressure throughout my body, would be the best gift…

I bought a new mattress 6 months ago thinking it might be the answer to so much misery.. ….but it was not… in those 6 months bearing any weight on my hips and shoulders and elbows have become increasingly more miserable… making me feel like positioning someone who can barely move themselves when laying down and has very little muscle structure, must be how the devil gets his jolly’s…

Lack of sleep is an understatement…

How long can I just go through the motions and get through the day, when the next day always confronts me with something unimaginable…

Living with FSHD is hard….now what I dread for my future seems like an illusion…. like the potential of someone else’s life, not my own…

Day by day…..is all I can do…..

Give it my best…..hope for the best….and live my best…

Even if I never sleep and have to start walking around naked….