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Fresh Mud

A blog about living with FSH muscular dystrophy. Questions?

Post 38 of 45

Pressure sores

Wednesday 19th October, 2022

When I first came to stay at the neurological centre I currently live in I came for respite as my health had taken a nosedive and, though I still had bladder control, I occasionally had bowel accidents, so I started wearing a pad when I was in my wheelchair. For whatever reason I never got out of the habit and carried on doing so even after regaining strength and control; it was sometimes necessary when going out for extended periods as it’s impossible for me to use toilets without being hoisted (and they’ve yet to develop a hoist that fits in my wallet).

Over time, because of this constant pad-wearing, and because of the curve in my spine causing me to put more pressure on one buttock, I developed a rough and itchy patch of skin just inside my right leg, immediately below my bum; it was fine for a few years until one day the skin broke. The nurse said she was reluctant to put a dressing on as the skin could get too thin and that it would lead to further complications.

The main issue was that I am almost always either sat up or lying on my back, ie. my bum never gets any pressure relief; so, I have changed my morning routine from:

Breakfast → lie-in → personal care → get up

To a slightly more responsible:

Breakfast → personal care → pressure relief → get up

Quite often the personal care isn’t as early as I’d like as we are almost constantly short-staffed, but as long as I get at least an hour of pressure relief, ie. lying on my side, then I’m happy; a good day sees me getting two and a half hours.

In the long term I can see that I will need to increase the times that I am lying on my side, but the trouble is, whilst I am doing so, I am unable to do anything as I cannot use my arms whilst in that position. The only thing I can do is sleep, so that is what I do.