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Pressure sores and my life  8

Some of you already know that I have a form of muscular dystrophy - I was born with it and it’s not contagious, so stop edging away. I don’t mind talking about it, but when I do I find myself feeling guilty because I don’t want the listener to feel sorry for me, so I usually end up making it out to be not quite so bad as it is - that’s something I’ve done for as long as I can remember.

Now you probably thinking “Oh, bloody hell! He’s gonna get all whiny on us …” but, no, I’m not - I’m simply going to start opening up a bit and this is the place I’m going to do it. As the recently-changed blurb at the top of the page says: “A mix of observations on life with muscular dystrophy interspersed with amateurish CSS and Mac OS X tips.” Note the word used is “observations”, not “complaints”. Here goes …

Because my conditional is progressive, i.e. I get slowly worse over time, it’s been very easy to just “get by” with day-to-day things like moving around, dressing, bathing and so on. The trouble with this is that you can suddenly realise that although you’ve been doing a certain thing successfully all along, there is probably a much easier method to be used with a bit of help or specialised equipment. A good example is getting around the house: when I could still walk and was more agile with my legs I used to manoeuvre myself from room to room by scooting around on a standard office chair. However, over a few years I was getting slowly weaker and scooting around was getting tiring, but I stuck with it because “that’s how I get around”. I can’t remember exactly who suggested it first (although it was probably the missus), but one day someone said “Why don’t you get a motorised office chair?” And I had one of those moments when you think “Now, why the hell didn’t I think of that before?” I’d spent so long just getting on with it (and knackering myself out) that it hadn’t occurred to me to look for a different solution. So, after some research, test drives and a chat with my rich (and generous!) uncle, I got myself a nice, shiny Stannah S201. My life was literally changed overnight - I could zip around the house without having to stop half way and, even better, I could get to answer the door before whoever it was knocking gave up and walked away.

Anyway, I digress - there’s a whole entry dedicated to my chair. Today I want to talk about my feet.

Since I made a conscious decision back in March 2003 to stop trying to walk (I could only walk a few yards before getting tired, the pain starting and being paranoid that I was going to become close friends with the ground) my feet have been swelling during the day. At first it wasn’t too bad - just a slight swell around the ankle that soon went after a quick rub - but it gradually got worse. Also, I was starting to move less and less in my sleep - I’d doze off on my right-hand side and wake up in virtually the same position. But, this wasn’t a problem … at first. The trouble was that my lying still all night combined with a slowly worsening swelling foot, I developed a pressure sore on the outside of of my right foot - whilst there was no broken skin, it kept waking me up at night with quite a severe pain.

As I mentioned earlier about things building up gradually without me really noticing what it was doing to me, so the swelling and pressure sore slowly got worse over a period of about 18 months with me just rubbing it when it swelled or rolling onto my front when it hurt in bed.

Eventually, other people noticed the swelling and pressured me into calling the doctor who in turn sent out the district nurse. I got a severe lecture from both of them, telling me that I should take more care of myself and that if the sore broke out and started weeping then I’d be in serious trouble: apparently they’re very difficult to sort out once that happens and infection is a serious risk.

(For the morbidly curious amongst you, I took a picture of the sore in question so I can do a “before and after” comparison - I warn you, though, it’s not a nice picture: my right foot.)

All the time they were talking to me and telling me what’s what, in the back of my head I was thinking “How the hell did I let it go this far?”. And, to be honest, I don’t think I know the answer - I seem to have slipped into a routine whereby I just get by. I come up against a problem and get round it by the easiest means possible. As a person who is facing a life of increasingly difficult mobility, I should be taking care of myself more than most to ensure that my life ahead is as full and of a quality similar to the life I have led so far. This may seem obvious to most of you, but like I said before: I’ve always just got on with it and done the bear minimum I could to get away with whatever situation I was faced with.

If you want to get really deep you could say it’s a metaphor for my entire life, and you’d be right.


Good story, it’s slightly annoying when people think that you need a reaction ie. sympathy. My form of muscular dystrophy is one that gradually gets worse, so for me its the worse kind because I’m so damn stubborn that no matter how difficult something get I wont stop trying. Despite what everyone says. Can I ask, do you know of any self support groups I can recommend for people with muscular dystrophy? I keep getting asked to recommend and I cant give one. Thanks. - Clare

Just found your site through a link over at Crippled Monkey’s Blog on the BBC Ouch website. “I’d spent so long just getting on with it (and knackering myself out) that it hadn’t occurred to me to look for a different solution.” Isn’t that the truth. I often wonder how we get stuck in these unhelpfull paradigms,or perhaps what causes the epiphany to pull us up and out? (definitely not my PT/OT folks!). Glad to hear your uncle helped you get a shiny new motorized chair. Hmmmm….we crips could all use a rich uncle :) - Gimpy Mumpy

@ Clare: I was stubborn once … and then my family beat me with sticks until I stopped being stubborn. Seriously, though, you’ve got to think of the long-term - prevention is better than cure and, to be frank, there is no cure. Sure, you can get equipment and aids, but it’d be much better if you sorted these things out before you *really* need them. . @ Gimpy: having someone who can see the bigger picture and can "think outside the box" (to quote a cliché) helps a hell of a lot - my missus is good at that. Rich uncles should be available on the National Health. ;^) - Timmargh

So, you’re telling me to give up the good fight? Nah you’re probably right anyway, it takes the council ten years to get me statemented, then starts to think about giving me the equiptment that I need, but somehow decides against the funding. Thanks anyway. - Clare

No, don’t give up the fight, but make sure you realise when you’re hurting yourself. And councils are crap. "Can I ask, do you know of any self support groups I can recommend for people with muscular dystrophy?" There are a few about but they’re usually geared towards particular types of MD. The best place I’ve found listing groups is: - Timmargh

Thanks for the web site, I’ll pass it on. No kidding about the council, I need a sugar daddy…. know anyone? lol - Clare

you know tim, may I call you tim? … good, I too have a form of MD, the duchenne flavour. I use a sort of pressure relief mattress from hill rom and I get no sores at all, maybe this is something you could consider? Bert - bert

Cheers, Bert - I’ll check them out. I did get a mattress topper from my district nurse but it smelt of piss - my carer tried cleaning it but to no avail. - Timmargh