6 May 2012

Apologies, I have already broken the promise, I made to my readers, not to mention the pain aspect again, until I had some resolution, but I consider it so important that other MND sufferers, and their carers, learn where I have got to in relieving this distressing side effect. I certainly was not advised by any of my team that I might expect to suffer constant pain at night. Are we just expected to know this naturally follows a disease like MND? Had I known, well in advance, I would not have worried so much that I was suffering from something like multiple myeloma or l some other skeletal disease, rather than just being a normal side-effect of MND.

Anyway, the expensive elegant heel protectors, pretty well did their job. Certainly, reducing the amount of pain from the unbearable to the bearable. Sadly, prevented from keeping me awake through pain in my feet, the devil transferred his efforts to my mid-drift attacking both hips and buttocks. I have to accept that my whole body will now be affected by pain at night through the lack of mobility and must seek a balance between the quantity of painkillers, I take at night, and the effect on me during the following day. No doubt, after my letter to the four doctors, one or other of them will contact me after the bank holiday and we may well come up with a solution.

My Darling daughter Chloe, came down for lunch today and stayed overnight, I think she plans to return after lunch tomorrow. It always lovely to see her, particularly on her own, when she is not so distracted by the children. Although she is terribly keen to take over some of Alice’s caring, while she is with us, we have taken the opposite course, up to now, and made sure she gets an extra lie in on Sunday morning, which she certainly doesn’t managed to do when she’s at home with her three children and husband.

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