January 8, 2013
At this time of the year we look back and without a doubt last year was our busiest ever! So thoughts now turn to this year 2013. This is where I am in an absolute quandary. Without a shadow of a doubt, if I hadn’t kept myself so busy and sat there doing nothing; my Dementia (5 years in now) would have defiantly got worse. But how much is too much, these are my fears.
I have this fear of becoming worse and worse as time goes on. Don’t get me wrong, deep down I know I will, in time, but hopefully just not yet, but my need to keep going and my WILL to live spurs me on!! I have this pent up energy inside (almost like anger but not quite loll) that is bursting to come out and do more and more, even after the five years of doing what we have done, the passion to improve things has never wavered. I wake each morning thinking:
“I have so much yet to do!! I don’t want to DIE!!! I WANT TO LIVE!! I WANT TO SEE A CURE FOR ALL !!
As you know over the new year my Angel Elaine was very ill and I spent all my time (Trying) to look after her and I would do it from now till the day I die if I had too, especially after all she has done for me, and I would happily give up all the awareness raising ect if she asked me to, but I know she wouldn’t do that.
But I have been asked to slow down a little. My fear is so embedded in my Psyche that I have convinced myself that if I do it will be a victory for this B****Y horrible disease . I am convinced that if it see`s one chink in my Armour it will seep into my brain and start to eat away even quicker than it is now! How many more people, just like me, also go through this awful predicament?? How many people realize that this what goes through a person mind when they themselves have dementia? MY GOD!! This is such a LONELY DISEASE!!
Even with this disease I still think I am so lucky because for me, the tablets have worked!! True, I am getting steadily worse and I am now at the stage where I think I am just fine and dandy, but when at the end of the day, Elaine tells me I am not and why, it’s not that easy to take. But if I wasn’t given the medication a year ago I would not be as well as I am now. But even then the Guilt Monster comes along and reminds me that most of my dear dear wonderful friends who have this same disease have gotten steadily worse and much quicker than me, some have even passed away
I MISS THEM SO MUCH!!!!
So here I stand, getting gradually worse, but I have been doing for the last five years now. They do say you have a (very approx 6 to 12 years) if you’re lucky, which MIGHT mean I have at LEAST 6 years left. Mind you we have been fighting for better conditions and awareness for the last five years and that has passed so quickly, I hope the next 5 years don’t pass as quick! LOL.
So I will compromise and say that I will be choosier on where I do the presentations and how far away they are from Torbay. I will also try to concentrate more on contacting the big Companies and hope the TDAA volunteers will help with the local shops. But one thing I would never compromise on is my Determination to see a change in my lifetime (however long that may be) in the way Dementia is perceived and the Stigma that surrounds it. As you know my Tagline for 2013 is
Let’s make 2013 the year the world LISTENED !!
And we will my friends, we WILL
Norrms and family xxxxxxxxxx