Wednesday, April 13th 2011

A week in bed

Things have not been going too well for me lately. I’ve just spent the past week in bed trying to alleviate pressure on my bottom! As a consequence I guess of spending so many of my waking hours in a wheelchair each day, and not being able to reposition myself on the seat, I have begun to develop some pressure sores.

I suppose it was inevitable that sooner or later I would succumb to pressure sores. My inability to reposition myself and thereby redistribute my weight has meant that areas of my skin that I sit on have been subjected to constant downward pressure for most of my waking hours. What started out as skin irritation with the terrible sensation of itchiness whenever the pressure was relieved has quickly developed into the early stages of several pressure sores with broken skin resembling a graze.

I must admit I never realised how bad pressure sores can get until a couple of my carers explained them to me and I had a chance to dig a little deeper on the Internet. Pressure sores occur when the flow of blood through the skin is disrupted (as the skin is subjected to pressure). Without a blood supply the skin area is starved of essential oxygen and nutrients which can lead to the skin breaking down and a pressure ulcer developing. In extreme cases they can develop into open wounds revealing the underlying bone and lead to serious infection.

Not wishing to allow them to get any worse I took the advice of my carers and confined myself to bed rest in the hope that I could distribute my weight over a greater area. That was more than a week ago and it is only now after being told by the district nurse that the dressings could be removed and that they were healing nicely have I allowed myself to get up for a few hours each day. Although I feel a lot better and I’m not experiencing the discomfort I was, I realise that it wouldn’t take much for the situation to reverse itself once again, especially as I’m discovering that after a few brief hours the skin under pressure starts to heat up and I feel like I’m resting on the base of the wheelchair seat.

I think that there are two problems: the first is the continual loss of muscle tissue which is now reaching a point where it is affecting my ability to sit in a chair for any length of time and be comfortable. More often than not these days I can feel my bones digging into me which is a very uncomfortable feeling and quite distracting when I’m trying to concentrate on something. The second is the type of wheelchair seat cushion I’ve got. Although it felt quite comfortable when I first got it I think that over a period of time the constant pressure on a small area of skin has had an adverse effect. Clearly I now need a proper pressure relieving seat cushion and last week I had a visit from the folks at Wheelchair Services to do an assessment of my needs which has led on to them recommending that I trial a ROHO seat cushion. For anyone who’s not seen one of these, it’s sort of like an upside down extra large egg carton with each pocket filled with air. The idea is that each section is inflated, the user then sits on it and air is then gradually released so that you sink into it. The one I tried was not a good fit for my wheelchair, nor as deep as my current seat cushion, and once seated at my desk I found it very difficult to use my legs to operate certain aspects of my computer. I think the reason is because it is not a firm stable surface and my legs, already missing a lot of firm muscle tissue, have a tendency to roll apart. Wheelchair Services are now looking into the problem for me. If it wasn’t for my computer’s foot controls some of my current problems would simply melt away and I could then leave my wheelchair leg supports attached to the wheelchair. Unfortunately I have yet to find a reliable alternative hardware method of controlling the mouse functions although I keep looking.

Until the pressure relieving issue has been sorted out I am having to compromise somewhat between resting on the bed for long periods with short intervals of several hours sitting in my wheelchair. Obviously I’m not managing to get much done and I’m filled with frustration that time, already a very precious commodity, is not being spent in a way that I would wish. Last week for instance we had some of our warmest and sunniest weather this year, and yet I spent most of that time lying in bed with the sun streaming through the blinds. How I would have loved to be outside in the wheelchair getting some fresh air. Fortunately I at least now have a flatscreen TV mounted at the opposite end of the bed and this has been something of a lifesaver in keeping my mind engaged. I’ve been able to keep up-to-date with the news, enjoy some good documentaries, work my way through some of the Top Gear back catalogue, and stroll down memory lane by watching the very first episode of The Sweeney, a hard-hitting police drama from the 70s which was very popular back in the days when I was studying at college! And when all this was too much I had access to plenty of radio stations courtesy of Freeview.

So for now I’m resting for long periods and then rushing around like a mad thing for the few hours each day that I can sit at my computer. The week I’ve just had in bed has been the longest amount of time I’ve spent in bed in my entire life, and I can’t help but think that it is a sign of things to come.

And to really make my week, one of my carers noticed a rust coloured patch on the ceiling of the new wet room directly over the shower unit. Further investigation revealed bubbling paintwork on an adjacent wall and a wet patch on the floor. Since then we’ve had the builders back in clambering about on the roof removing tiles so that they could gain access to the pipes in the loft space to repair the leak (there is no loft inspection cover). I’ve barely been downstairs three months and already it’s leaking!

Oh well to borrow a line from Gone with the Wind ‘tomorrow is another day’.


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6 Responses to Wednesday, April 13th 2011

  1. Jason Glover says:

    Good to hear you’re up again and blogging. I hope everything gets sorted very soon!

  2. ashlee says:

    hello mark, i have just come accross your blog while reading up on MND, im training as a nurse and have recently started developing an insight to MND. Your blog is so inspiring, it is lovely to hear you enjoyed being out in your chair and im really pleased for you that your sores are healing, hope you manage to spend some more time out of bed and maybe get out again in your chair, but for now enjoy your freeview and have some well deserved rest! your blog is truly wonderful and im sure its comforted many people, ‘tomorrow is another day’ stay strong and hope to read abother one of your blogs soon

  3. Ted says:

    Hi me ol mucker, just had a nosey through your latest adventure. bed sores indeed, you just want the nurses and carers to rub cream on your arse lol, dont blame you tho. Shame to know your were out of action for a week or so and confined to bed, no fun there even with a tv and a back log of shows to watch. Anyway the weather is meant to be nice all week, so oil up your wheels, inflate your cushion and get out in the sunshine for a bit. catch you soon, and as always take care and go careful.

  4. sweetpea says:

    Dear mark sorry to hear that you have had presure sores. at lease you are managing to rest on the bed to relive the pressure. as much as it is a pain in the rear end excuse the pun. hopefully the cushion will help. The blue bells are just poking there heads out . i will get you a few pics at the weekend. think of you often

  5. Jane C says:

    Sorry to hear of the pressure sores – Richard had the same trouble, as you say, it’s an inevitable consequence of MND. However, his district nurse gave him two very simple brilliant, inflatable plastic seat cushions (one for his riser recliner and one for his wheelchair), which had tubes in them (like an airbed), and once he started using them, he didn’t have any further problems with his bottom! Further down the line, as his shoulders got thinner, he had the same problem with sores round his shoulder blades, but the nurse then provided longer ones for the backs of the chairs too. Maybe you should investigate what you DN can provide?

  6. MJA says:

    Hi Mark,I am a member of the Build Uk forum and do follow your blog,I have been wheelchair bound for the last 3 years and can highly recomend a J2 deep contour gel cushion by sunrise medical this has worked well for me and i have had no pressure sores i did try a Roho but found it very uncomfortable.
    Regards Mark

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