11 April 2012
I had another miserable night after the initial sleep, waking around midnight, with painful joints. First one and then the other until around 4 a.m it was quite severe but, although I clicked the alarm twice during the night, I did so only 10 min or so before ‘my lovely’ was due down to turn me over. What a blessing when she arrives, I believe that it is rarely more than half an hour or so. I e-mailed Doctor Mark Abrahams, the pain consultant at Addenbrookes, after the last fiasco of the so-called telephone consultation. I spelt it out in in clear terms so I hope he comes up with something fairly positive soon.
We have had some difficulty now over the past few weeks for Ross nursing to provide a carer at nine o’clock. They can manage 8.30 and 9.30. Frankly, by 9.30 most evenings I am like a zombie-my jug of energy being completely empty. Having said that I do not really want to spend any longer in bed because of the pain and for that reason rejected the offer of 8.30, however, after the last few miserable nights I have agreed to give 8.30 a trial run for a month. So long as I can sleep that little bit longer and do not require an extra turn or find myself lying there in pain for longer periods, then we may settle for the earlier bedtime.
Readers might well remember that, some time ago, (see 23rd February 2012 entry) after the Smedley suicide in Dignitas Switzerland. I propounded the idea of a programme which explained the working of Hospices, the purposes of which is frequently misunderstood as being a place where you, to die. I put the idea to the producer of the original programme, Craig Hunter, who took the matter up with the BBC. When it was initially suggested, the BBC did not reject the idea out of hand,. Although I have chased him up as he has not heard anything it doesn’t look too promising
Why I mention this at this stage is because they main reason for the original television programme was that the author, Sir Terry Pratchett, had been diagnosed with early Alzheimer’s, and knowing how his mind would eventually go, wanted to be informed about the possibility of assisted suicide whilst he was of sound mind. I had never read any of Sir Terry’s books but, yesterday afternoon, after I’d finished my blog and e-mails etc I watched a film, Going Postal, a fantasy drama, based on one of Terry Pratchett’s books of the same name. There were elements of it which reminded me of the Harry Potter films.
Without knowing anything of the background, had I been told that this author had written the Harry Potter stories and that Going Postal, was one of his early works when he was a young man, I would have believed them. Anyone who has access to Sky Films could check this out for themselves and see if they agree. I would love to know whether I was the only one to make this possible connection.
Click here for a bit of fantasy of my own
I have just come across your website and found your blog really inspiring. I was a carer for my father with MND until recently and he would have enjoyed your diary entries and your jokes. He had a keen sense of humour which he never lost and an independence of spirit which was never affected by physical incapacity. I would like to thank you for taking the time to care about other people and their carers and offering them your support. I wish you well.
I did reply to your comment a few days ago but not on this page. I’m so glad that you found the blog inspiring. What a pity of dear father, with his keen sense of humour, was not aware of the blog but it is as much for the carers as it is for the patients.
My condolences over the loss of your father.
I have over the years followed the news from my parents. What you have achieved is remarkable and I have passed this on to a friend who has recently been diagnosed. It has been so many years since I last saw all your family. Please send them my love and Sir I am honoured by what you have adhieved to have had the chance to once be part of your family, my love to you all Rob Mullis
I did reply to your kind comment but on a different page. It is extremely kind of the to take the trouble to write and I most certainly pass on your good wishes.