Monday, March 15th 2010

Still in pain!

Lower back pain continued to plague me all weekend. Every morning I’m waking up in the early hours with discomfort in my lower spine and surrounding area that steadily builds in intensity preventing me from getting back to sleep. Trying to move my legs or indeed even the simple act of breathing aggravates it. By the time my carers arrive at 8 AM I’m about ready to start climbing the walls. Even lifting me into an upright sitting position is terribly painful.

Not sure if coming off the Tramadol tablets so abruptly was the cause but I was terribly ill over the weekend with pale skin, little appetite and at one point physically sick. Not my best weekend and it left me feeling completely drained and of course extremely tired no thanks to all the sleep I’ve lost lately.

On Monday morning I had an emergency visit by Heather, the district nurse, as by this time it was becoming obvious that the pain in my back was not going to go away by itself and only seemed to be getting worse. My care agency were becoming concerned about my lack of sleep and general health and put a call in first thing this morning. Fortunately the district nurses were aware of the problem as they’d also received a fax from my GP asking them to look into pressure relieving mattresses and possibly even a hospital bed.

As a first step I decided to settle on just having a pressure relieving mattress and this was ordered up in the morning and amazingly was delivered just after 4 PM in the afternoon. To be honest we’re lucky here in Basingstoke because Adult Services’ Integrated Community Equipment Store for the whole of Hampshire is based within the town so obtaining equipment, provided that it is in stock, has never been a problem. The district nurse returned shortly afterwards and set it up ensuring that it was correctly inflated for my bodyweight. Apart from the mattress itself the only other piece of equipment is the pump and controlling electronics and this runs almost silently. Once inflated the mattress is about 8 inches thick so cannot be placed on top of my existing 9 inch thick pocket spring mattress. This has meant trying to find a home for a mattress where space is at a premium as the house is starting to fill up with the clutter of all this equipment I now need. For now it’s keeping me company in the study standing vertically up against the wall but will not be able to stay there as it will restrict the movement of my mobile hoist when it comes time to use it. We solve one problem and create another!

With the mattress removed there is only the base unit of my bed left and it was at this point that common sense finally kicked in and I asked the district nurse to order me a profiling bed just in case the pressure relief mattress is not effective on its own. Like everything else associated with this disease I’d resisted the offer of having a hospital bed, or community bed as they are sometimes called, for some months now. I was quite prepared to accept having one in the extension when it gets built but didn’t like the idea of giving up my lovely bed and rearranging the upstairs bedrooms. I guess subconsciously it was another futile attempt at trying to maintain the life I used to lead, and accepting a hospital bed was like giving in. I know that might sound crazy because ultimately MND will march along at its own merry rate regardless of what I want or how stubborn I am. But sometimes I just like to preserve the illusion of normality for just a little bit longer. Anyway let’s hope that tonight I can enjoy a decent night’s rest, fingers crossed.


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