Fresh Mud

Living with FSH muscular dystrophy. Questions?

One of the symptoms of my particular form of muscular dystrophy that I have always had is the inability to fully close my eyes, especially whilst asleep. This has led to various people being frightened on many occasions; friends during sleepovers, teachers on school trips, and even nurses whilst I was staying in hospital. I say “frightened“ because seeing my eyes partially closed and a significant amount of white eyeball showing has caused people to think allsorts of things including that I had expired in my sleep!

It was never really a problem for me in my youth but as time went on I started getting sore eyes in the morning and increased difficulty when trying to open them first thing; the exposed part of my eyeball would be dry and the lid stuck to it and it would take several seconds of trying to move my eyes whilst holding my lids down with my fingers before the pain subsided and I could comfortably open them.

Eyedrops twice daily have become the norm and, whilst not a perfect solution, they do a satisfactory job. Amusingly, the only foolproof solution I have found to having pain-free and moistened eyes in the morning is to literally stick my eyelid down with micropore tape! Obviously, it is impractical to tape both eyes at the same time so, on the occasions I do this, I choose the sorest eye (usually my left) and then feel like a pirate for the night.