31 July 2012

Posted by DMC on 1 August 2012 in Diary |

The Olympics are well underway and by Wednesday, when the field sports start in the main arena, it will be wall-to-wall Olympics for the next couple of weeks. Unfortunately, team GB is not doing well, just missing out on a medal in a number of instances. I think it unlikely that we will do as well as we did in Beijing and come fourth in the medals table, but time will tell.

We had a mid-morning consultation with the Arthur Rank Hospice OT (Myra). Myra, apart from having all the normal OT training, is also a specialist in palliative care. She was here, as much as anything to demonstrate to me how to control my breathing, when I found myself gasping for air and to use this technique in lieu of popping an anxiety pill. She also took note of the commode problem and less importantly the recliner chair but with a new control system. All it needs to do is to go up and down by means of me striking or nudging a large button or lever rather than attempting a single finger press which I have found more and more difficult over the past two or three weeks as my hands and become almost useless and certainly and fingers much weaker.. I warned Myra we were’ falling between the stools’ at present since Harriet had, with the best will in the world, intervened and introduced Avana, an independent OT. Add to that doctors Saunders and West also trying to acquire the right sort of commode for us you can see, quite clearly how we might have got our wires crossed and alienate it our own OT and as a consequence do not seem to have made any progress in that direction.

My laptop started playing up this morning when I was writing my blog, Suddenly, for no apparent reason, it decided to capitalise every word of the 71 pages in chapter 10.

Of course, I should have immediately pressed CTRL+ Z to reverse whatever order it had received. However, instead, I tried different commands, without success, until I decided that the simplest way would be to go into the blog itself and cut and paste each entry back into my blog diary. A fairly lengthy and arduous task, but one which should be fool proof. Then I remembered that Paul’ the computer’ was due to do a three-hour stint of babysitting this afternoon so, as soon as he arrived, I explained my stupidity and, in his usual calm manner, sat down and got on with the job, finishing it just before he left three hours later. Good old Paul. It’s not that I couldn’t have done it myself but I suspect it would have exhausted me.

Regular readers may recall that I have noted, more than once, that ‘extreme fatigue’ is listed as the main characteristic of MND patients, but to date, I have been able to say, that might be the universal feeling but as things stand, I could not claim to suffer from extreme fatigue. I believe that has now changed as there is no doubt that any prolonged effort does exhauste me. In addition, or part of it, my breathing gets shorter until I am virtually gasping of the to each few lines of dictation. Thinking ahead there will come a time, and I do not think that is very far away, when I will not be able to have a shower (unless there is a seriously totally waterproof respirator, which I very much doubt). Also, I can see that I will have to use the respirator more in short blasts during the day rather than solely at night.

I have accepted then that I’m getting weaker by the day and I’m certainly finding it more tiring cope with everyday living. However difficult that becomes I have extracted a promise from ‘my lovely’ that she will not attempt to send me the hospital or a hospice, even when the end is nigh. manner




1 Comment

  • Christine from BC says:

    I know it has been said before and I am sure it will said again BUT what a gem you have in “Your Lovely”.A beacon of light in an otherwise dark situation. Cheers to “Your Lovely”.

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