This site is now an archive. You can find my current stuff here →

The eyes have it  3

So, here’s another entry about my disability. Not sure why I’ve decided to write more of these, but here goes anyway.

One of the symptoms of FSH muscular dystrophy is having difficulty being able to close your eyes properly. I can’t speak for all FSHers but personally I can’t close them fully — here’s me, trying my best:

Photo of me trying unsuccessfully to close my eyes

As you can probably see there’s a definite gap. This isn’t so much of a problem during the day if I need to close them for whatever reason (e.g. if I’m in Erica Campbell’s bedroom and she’s changing her support stockings) but at night it becomes a pain, literally.

When I wake up in the (mid) morning my eyelids are stuck with the exposed part of my eyeball having dried up — I can’t open them without pulling them all the way down with my fingers and then rolling my eyes around to moisten them. They’re also quite sore and I’m usually blinking for a good ten minutes or so before they feel anything like normal.

I spoke to a doctor about this and he told me that he’d seen cases of people getting ulcers on their eyes because of similar problems. Ulcers! Argh! I’ve had an ulcer on my foot (I may have mentioned it once or twice …) and that really hurt so the prospect of getting them on my eyes made me feel physically sick.

One solution offered to me was eye drops of some kind which seems like a great idea but I am the worlds worst person at having things dripped in my eye — I can’t hold still knowing that something’s about to go in there and I twitch, blink and flinch at just the thought of it.

As it turned out, the answer to my problem came in the form of an eye mask like people wear on flights — it only cost me £3 but it did the trick wonderfully. After a couple of nights of trying it and adjusting the strap I can now wake in the morning with perfectly moist eyes and without the slightest bit of soreness. And if you’re wondering how I look whilst I’m wearing the aforementioned mask, well we can thank my care nurse Kate for the taking a photo of me whilst I slept:

Photo of me asleep
Sleeping “beauty”


Haha aren’t you the cutest Personally if I was your nurse I would have written “Wanker” in tipp-ex on it - Darren

Thank god you’re not my nurse! Besides, Kate’s far better looking than you … - Timmargh

Tim needing his beauty sleep !!! :-D - MHC