29 January 2012
Being a Sunday ‘ my lovely’ announced that today would be a’ lazy day’. How that differs, in my case from every other day, I’m not sure, but certainly it might mean that’ my lovely’ manages to sit down this afternoon and nod off in front of some golden oldie. My days. during this winter, when I am unable to go outside, vary very little, except for the odd visitor or tradesperson. Yesterday, our highlight of the day was Jamie’ the plumber’ who came to investigate some problem with our central heating which, to the delight of’ my lovely’ ‘proved not to be too serious and will be remedied. shortly. (This is not the time of year your central heating to go wrong, particularly with the coldest February on record being forecast something like -11 agreed degrees centigrade during the day) I suppose I should add to that my fairly regular visits to hospital not only from my quarterly checks-ups but the other bits and pieces. For example, the pain clinic and the eye clinic. Otherwise I usually spend the best part of the morning writing up my blog and answering the various e-mails that come in daily.. This usually takes me to lunch time when, after being fed, we spend half an hour or so in front of Judge Judy, I am glad that we are not literally in front of her’ as she is a fairly formidable lady. After Alice has finished her short rest, and departed to do her jobs, I will either read or watch one of the exciting series of programmes that Paul’ the computer’ has downloaded for me. The first two being Lost and 24. I can’t think where I was the first time these were being shown on British television but they are both absolutely riveting and tremendous entertainment. The afternoon disappears quite quickly until teatime when Alice joins me again, usually to watch Flog It., a sort of downmarket Antique Road show, the presenter of which, Paul Martin has a certain amount of charm, (Alice has been interested in antiques for the last 30 or 40 years and is quite knowledgeable so these programmes are of great interest to her.)
That over. I have another couple of hours to kill before the six o’clock call from my carers who get me ready for bed.
Then we have supper after which ‘my lovely’ will have found some Poirot or
Midsommer Murders type amusement which will take us up to my bedtime at 9.30. By which time, to be absolutely honest, I’m getting rather breathless and feel extremely fatigued. having done virtually nothing all day. Such is the nature of MND. and so another day passes!
This routine will continue until I find I need respirator intervention during the day and, depending upon how invasive that becomes will determine when I will call it a day. In the meantime, I can honestly say that I am reasonably content; still have some quality of life and could not be better looked after and that has to go a very long way towards my well-being, both by ‘my lovely’ and my splendid carers.  Click here to see why you should always carry a camera.