We all go through life worrying about what may be happening
or what may happen in the future, and that is normal, but those who are ill
struggle with fears of a different nature and that is the fear of the unknown
in our futures.
Many struggle with family relationships, or the dread of
future examinations, or perhaps hospital appointments, they are all natural and
yet all totally different, as they are approached in different ways.
As someone with an illness which the doctors assume is
dementia related or to give it its full term Lewy Body Dementia, I find
thinking about the future fills me with total dread and fear. In my case it’s
the thought that I may loose control over my dignity. I also dread the fact
that I may well forget my family members.
Since I was diagnosed at an early stage, it gave me time to
sort myself out, so that there is not too much left for my wife and family to
do when things go pear shaped.
It also gave me time to look back at what I had achieved,
and sort out any lose ends, which there always is when we think about it, but I
am starting to be more positive as life moves on.
Although life goes on as normal many days, there are some days when we just can not
settle or indeed say we are happy about doing normal things, this is because
the short term memory causes all sorts of problems.
I am not as active as I used to be, and don’t do as many
public talks, but instead I am enjoying taking things easy and enjoying my life
and family while it’s still possible. I don’t write as many articles for my
blog anymore these days, but that is because I struggle to find something to
write about and put it into words. Sometimes writing an article can take a
couple of days, where it only took an hour or so when I started.
I now put articles from the press on the blog, as they are
very interesting and I hope that they will inspire others around the world to
follow suit and set up more projects for those who have this illness. I think
this also helps these groups with publicity in other parts of the world.
The blog also keeps me occupied, as there is now a constant stream
of e-mails from people around the world who find the articles interesting.
Until three weeks ago I did not know these existed, as they were all going into
a spam file which is not always visible, and when you have this illness you don’t
always see the obvious.
So it’s all getting very interesting doing this blog, rather
than trailing around the country talking, every day of the week. I still do
talks, but these days I am more selective, about who much I do and when, and
this allows me to pace myself so I don’t get too tired.
I am more at peace than I ever was and more relaxed these
days, and for some reason I am not frightened of dying, but I suppose that is
because I will have no control over that when it happens. It was something that
used to fill me with fear, but not anymore.
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I always say that we may have this illness, but we are all so different.
This is my own daily problems, but I would gladly share anyone elses, if they send them in,