Thursday, March 25th 2010


What a difference a bed and mattress make. Two days ago I was waking up in the early hours with terrible pain in the lower back, but since having the profiling bed delivered with a foam mattress things have taken a turn for the better. The profiling bed I was given is a high spec one so can be configured in a variety of ways which I’ll probably make use of more as time goes by. But for now all we’ve had to do is elevate the top end so that my chest and head are slightly inclined away from the horizontal. With just this one manoeuvre I was able to start feeling the benefit on my spine straight away as the panel began to elevate. This in combination with a mattress that offered a higher degree of comfort than the pressure relieving mattress helped ensure a much better sleep. In fact even when I woke up in the morning there was still no pain and I felt a lot more refreshed than I had been lately. So based on the evidence so far it certainly looks like the problem was a positional one.

Two nights with a waking nurse

It was more coincidence than anything as we’d not expected the profiling bed to be delivered on Tuesday, but for the past two nights I’ve had the company of Marion, a very pleasant Macmillan trained nurse now working with the Hospice at Home team for St Michael’s Hospice. Lara, my palliative care doctor was becoming concerned about my lack of sleep and wanted to ensure that I got some much needed rest as by this time I was really starting to feel fatigued. So she’d made available a waking nurse who would be on hand to help alleviate any pain or reposition me in the night if required. So on Tuesday night Marion turned up at 10 PM and stayed with me until 7 AM the following morning. Had I still been sleeping on my old bed then I suspect there would have been more for her to do. Nevertheless on that first night I did wake up a couple of times, the first shortly before 4 AM when I was feeling unusually hot and, strangely for me, had a bad chest cough. Marion was on hand to prop me up further in bed and give me some water. I woke up again around 6:30 AM but on both occasions was pleased to note that I was not in any pain. Last night was even less eventful and I managed to sleep all the way through from 11 PM to gone 6 AM. So although I barely tapped into her nursing skills it was comforting and reassuring to know that she was on hand if I ran into difficulties. One thing I would add is that on both nights I had taken a Diclofenac tablet shortly before going to bed so there is still the question of how much impact the slow-release medication is having. For this reason I have asked Marion if she can liaise with her superiors and come back one night soon so that I can try an experiment. I want to come off the medication as I don’t want to spend the rest of my life on painkillers if I can help it but would like the reassurance of knowing that I have someone on hand for the first night just in case I do wake up in pain.

Catching up

So what else has been happening over the past couple of days? Quite a lot actually. On Wednesday morning I had a visit from Marion, my OT, and Stuart from Liftech, who’d been brought round to do a quote on some ceiling tracks for the top and bottom of the stairs. These are really something of a stopgap solution as it is still the intention of course to build an extension on the house but that is woefully behind schedule. The short run ceiling tracks will make it easy for my carers to get me downstairs and out of the house, something I’ve not been able to do since the start of the year. Whilst she was here, Marion took down some details from the profiling bed so that she can contact Possum to see how easy it will be to interface their environmental control systems with the bed’s electronics. We’re hoping that it will give me some independent control of the bed’s profiling abilities so if I do become a bit uncomfortable in the night I may be able to raise or lower parts of the bed myself.

In addition to a house visit from my GP late Wednesday morning I’ve also had my first telephone consultation with my neurologist. I was due to see him next Monday at the hospital but getting there at the moment is rather difficult and as there are no tests to conduct it seems pointless having all the hassle of trying to arrange transport just so I can end up sitting in a waiting room for 30 minutes or more (despite being on time) and then spending roughly the same time chatting in a consultation room before leaving. So I contacted his secretary recently and asked if I could switch it to a telephone conversation. So today, completely out of the blue, he phoned me up and we discussed everything that had been happening over the past four months since I had last spoken to him in November. We’ve agreed (because I still want to maintain the link with my neurologist) that in future all I need do is contact his secretary and request a phone consultation and he will get back to me within a day or two.

This morning I had a visit from Mark, the Building Control Manager with the local council. He’d called round to do a feasibility study on whether it would be possible to relocate the drain inspection cover in the back garden. At the moment it would be slap bang in the middle of the proposed extension (assuming we have no choice but to build at the back of the house) and I certainly don’t want to spend my remaining days in a room with a sewer inspection cover close by!


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