My
Thoughts
T
he negativity of the bodies deterioration is concerning, but it amazes me
how much positivity I have most days. Oh! There are the few days when
negativity creeps in.
As
I compose this part of my story it’s the few last days of 2012. It’s not been a
good year, as the MND now leaves very little room for adapting or maneuverability as it “bites” which has meant a year of constant adjustment as
muscles weaken to the extent of uselessness.
In
spite of the year through Jean’s constant attention when required, dedication,
and self-sacrifice of her time, plus, having the house adapted to a good level
to accommodate most of my needs has given me a fair quality of life under these
worsening circumstances.
My
illness is now in steady decline and interspersed with good days and then
sharp downturn days, this scenario can creep on for months finally ending in
another function lost for ever.
For
me personally the period of time since diagnosed (2005) has been long, and is
viewed with mixed feelings—upsides and downsides.
Firstly upsides, quality of
life has been acceptable. I’d have missed family, who have been so supportive
for Jean and me, and friends/neighbours who after seven years still regularly
visit us, (and of course when visitors come it can involve the occasional
dram) Jean and I got our first great- grandchild, Leon. He’s lovely! And to me this
is what life is all about.
The
downside with my illness is there has been no noticeable brain disorders, no
noticeable deformity, no loss of
sensation in any body parts, and finally no pain (a real blessing in its self). In my type of MND, as in most other serious illnesses, one is inclined
to dwell on his own deteriorations. Being a bit isolated geographically, plus
patient confidentiality and considering Scotland's population of just
over five million and in any year less than five hundred would get MND, it has been
difficult to get information. However,
as previously mentioned MND Scotland have now arranged support meetings in Inverness . To date there has been three, which we have
attended.
In
the latter weeks of the year typing from computer keyboard has been erratic, as
arms and hands get harder to control, so now using programme downloaded onto
computer as described in August.
Although
2012 has passed quickly, my illness has been a long drawn-out affair with
regards deterioration of the body as it teases me, but relentlessly creeps on.
Mind, again it’s been a “character building challenging exercise” to say the
least as I’ve grappled with trying to keep a bit of independence. However in 2o13
I feel there will be no choice but to surrender to the inevitable hoist, and a further loss of dignity.
My
parting shot for 2012 would be---I now
appreciate my life and the world as it is, and not as I’d like it to be.
Yet
with all the negativity of 2012 I’m looking forward to spring 2013 when again I
see leaves appearing on deciduous shrubs and trees and coming to life for
another season.
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