Being a man of few words ...

Actually, that's a complete lie: I talk a lot and some would say too much. But another problem with FSH (hey, he's moaning again ... who'd have thought?!) is the whole weak-facial-muscles-affecting-speech thing.

When I was younger, around nine or ten years old, and before I'd been diagnosed with FSH, my parents sent me to a speech therapist. They, and my teachers, had noticed that I gabbled somewhat and while most of my friends and close family could understand me fairly well, people who didn't know me had some difficulty. The appointments were fairly successful and I learned to slow my talking down slightly and to put my tongue behind my teeth when I said my Ss.

Now the weakness in my face is much more prominent and so I have to be even more careful with the whole speaking malarky. Apparently, when I'm on the 'phone I adopt a slightly different speaking voice and it seems that I subconsciously speak clearer than when face-to-face with someone -- I absolutely cannot see this myself, but I am assured it happens!

Of course, in my own head every word I utter is perfect, and this isn't just down to me thinking this way because I'm biased, when I actually pay attention to myself it sounds clear and legible. This used to make it slightly harder when I was talking to someone new and I was making a particular effort to be understandable, but after many years of doing so I can easily identify which words cause me to stumble, mumble and generally make an idiot of myself. The progress of the conversation also depends on the person listening as for every one who is prepared to say: "Could you repeat that, please?" there are a dozen people who think I'd take offence and will simply let me carry on without having the slightest idea of what I just said!

So, if you ever find yourself in the possibly unenviable position of meeting me and your name is something like Moby Pembroom, then please don't be offended if I repeat it s l o w l y ... :)

The eyes have it

(Continuing an old post, the short version of which is that I can't close my eyes properly when I sleep causing them to dry up overnight, so I started wearing an eye mask.)

Wearing the eye mask did solve the problem, but I started to notice that during the next day I was finding it difficult to focus on fairly close-up things, like my laptop screen, and some days would even get double vision when trying to do so. I tried loosening the strap over the course of a few months, but even at its loosest I was still having vision problems. The only way to avoid it was to not wear the eye mask, but this of course brought back the sore eyes.

So, as I was about to bite the bullet and try either eye drops (the horror!!) or, more temptingly, the eye-wash routine as suggested by a friend, I saw an advert for Optrex ActiMist. This is a spray you use on closed eyes, so my fear of things going into my eye is neatly circumvented.

I've asked the carer to pick me some if she sees it and will report back as and when I've tried it.

Taking the piss

Probably the biggest bane of my life is the inability to easily and conveniently use the toilet. When I'm at home it's not so bad, even though I have to use a hoist which adds about eight minutes to the time of going for a whizz and tires me out a bit, but when I'm out of the house then it has become nigh-on impossible.

Since losing the ability to stand, relieving myself when out and about involves several things, namely one person to lift, one person on trouser duty, a lot of struggling and a lot of pain and discomfort. I won't spell out the details as I'm sure you a) can probably work them out for yourself, and b) are already trying to avoid the mental image of me sat on the loo with my trousers around my ankles (oops, too late!).

Unfortunately, use of a convene or catheter is out of the question as, due to the severe curve in my spine and tilted pelvis, any tube fitted down there gets a kink in it very quickly and this can lead to disaster, as I once found out when I was 25 miles away from home ...

I think the time has come for me to seriously consider doing something about it.

A friend of mine, who suffers from MS, has had a suprapubic catheter fitted which, as far as I understand it, is a tube that enters the body just above the pelvis and goes into the bladder from above; obviously there is a bag at the other end of the tube.

I've read some details about what is involved and the process of changing the tube and I have to admit to being rather apprehensive. After all, I've never had surgery of any kind and neither have I ever had something like a catheter to look after. Having said all that though, I really can't carry on dehydrating myself for an hour or two prior to going out and then drinking very little when I am out, can I? No, I can't. So, I'll be discussing it with my GP and hopefully getting a referral to someone who can help me further.

If you've had any experience of a suprapubic catheter yourself or know someone who has then please by all means leave a comment.

The story so far

I was diagnosed with FSH, or facioscapulohumeral (literally "face, shoulder, humerus"), muscular dystrophy on the 28th of February, 1985, a day that will forever be known as: Thursday. FSH MD is genetic, but I got it through gene mutation -- a bit like Wolverine, but not quite as useful.

I currently live in a warden controlled bungalow in Kidderminster, UK, with my carer and a cocker spaniel named Rocco. I use a motorised wheelchair full-time.

I haven't been able to walk since 2003 and I haven't been able to drive since 2005. However, I can still wipe my own arse.

You can read many entries about my life so far in the 'Life' category on my old 'blog Timmargh.net along with more in-depth info about FSH MD itself.

Fresh Mud (or FreSH MuD ... geddit?) is about my life with FSH MD from now on and the changes I'll be facing, of which there are sure to be many more. It's likely to be a pretty boring and, quite possibly, depressing read. If you want to see a lighter side of me then check out Timmblr, or you can find all my sites and connections at trgriff.in.