A photo of me at home

A photo of me at home
A new photo of me and Jean at home

Tuesday, 8 October 2013

Life with MND - 2013 - March


 March
With the onset of this month, it is hard to believe how quickly the year is flying past, however, still the pessimist - one believes the warmer weather is not to far away.

Functions lost in February/March
left thumb now to weak to operate on/off button of electric toothbrush.
can’t free stand now without added support of backs of thighs pressing against electric wheelchair –(adaption-using hand holds either side of toilet).
 
It was with great reluctance in late March that I informed Jean too organise a care team to dress/undress/and shower me. This was a combination of Jean struggling with a bad back and her arthritic fingers not coping with putting on my elastic stockings (to help swelling of ankles and legs) and for me, it was just the effort expended in trying to put on and off trousers, and in the end I  just had to give in—first Carer on evening of 29th March.

Swallowing is fine, although eating can use up a few tissues between lips not collecting stray food and running nose only at meal times. I should really use a bib, but to proud at this stage and tend to crouch over my plate, which catches any overspill. Oh! I know one should be upright whilst eating according to those who know, but bib versus slouching over plate - slouching wins at present time.

It irks me being a burden, but as my illness bites deeper I have now accepted the situation as it is and not as I’d like it to be. Jean certainly helps with her infinite patience, which must be stretched at times with my perfectionist and dogmatic ways.

I sleep pretty well. Oh, I still get pain in hips/pelvic area when in one position,say after an hour maximum, however no pain in chairs, which is normally around 15 hours a day, so really very lucky.

I’ve no fear of death, but it’s the slow pace in which it may happen.

Let’s wind up the first quarter of the year with a few sayings that have helped me and could maybe help readers of story as well.....

Enjoy what you can and endure what you must.

Go to bed thankful — and wake up hopeful.

One must learn a new way of thinking before you can master a new way of life.

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