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.