Tuesday, March 16th 2010

Another sleepless night

So much for the pressure relieving mattress! I woke up at some time before 4 AM with discomfort in my lower back. It steadily worsened until every movement of my legs and even my regular breathing was aggravating it dashing all hopes of ever getting back to sleep. And it really was the longest night where the minutes seemed like hours and daylight would never arrive. To try and alleviate the pain in my lower back I repeatedly tried raising it up from the mattress a few inches by folding my legs and pushing down. But this repeated action eventually caused the duvet to slip off the side of the bed shortly before 6 AM so for the remaining two hours before Ann arrived I was not only in pain but also cold. I don’t think I’ve ever been so glad to see someone and although it was very painful getting me to sit upright I did compensate by having a luxurious soak in a foam bath. For the rest of the morning I was too shattered to do anything and just sat in my office chair trying to doze off.

I’ve chased up the district nurse to find out what was happening with regards the profiling bed as clearly the pressure relieving mattress was not effective in curing my back problems. Unfortunately I was told that there are none available so my name has been placed on the waiting list but at this stage I have no idea how long that will be.

In response to a priority call from my care agency, Lara, my palliative care doctor from the hospice phoned to discuss the problems I was having sleeping and the pain that was preventing it. She’s prescribed something called Diclofenac which is an anti-inflammatory drug that can be used to reduce pain. She’s only prescribed a one-week supply of these tablets as prolonged use can have a negative impact on the stomach lining so people who take these tablets long-term also need to take something else to counteract the side-effects of Diclofenac. Lara has also made me aware of the Hospice at Home scheme which is part of our local St Michael’s Hospice that could be called upon if the tablets don’t work. Basically what it means is that I would be given a waking nurse for a few nights who would be in the house with me ready to assist if I woke up in pain.

As the evening wore on I became very apprehensive about going to bed for fear of another night like the last one. Until recently I’ve only had to deal with MND and its effects during my waking hours and took consolation in the fact that at the end of the day I could sleep all my troubles away. But now this horrible disease is chasing me into my sleep and depriving me of the sanctuary of oblivion.

Mark

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2 Responses to Tuesday, March 16th 2010

  1. jane c says:

    Mark,

    Have been reading with some dismay of your night time woes. I believe I did mention some time ago that Richard made extensive use of a riser recliner on loan from the MNDA and ultimately also used it for sleeping in, as the angle that it kept his body in was the most effective for pain relief. He only had to wait for a few days before delivery from the MNDA – they will need to know certain of your body measurements as they are tailored to fit your leg length etc, but he could NEVER have done without it. Even the profiling bed that he had only actually served him for a few months because it was too difficult getting his body weight in and out when the paralysis became such that he couldn’t move anything for himself, whereas the riser recliner lifted him straight into a standing position from which the carer or myself could then move him (while he still had the use of his legs) or it can be used in conjunction with a hoist. I understand the mental block that has to be overcome in accepting that your days of sleeping in a “normal” bed have come to an end, but the comfort that the riser recliner gave Richard BY FAR outweighed any of his misgivings.

    Give it a try – things can’t be any worse than by the sound of it they already are.

    Jane

  2. jane c says:

    PS. I’ve also remembered that we did have to go with keeping the heating on all night in winter months because, as you know, you can’t keep yourself tightly wrapped in a duvet and being cold as well does nothing to help the pain. When sleeping reclined in his chair, Richard swopped a duvet for a lightweight fleecy blanket and managed to sleep very well.

    Jane

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