My world is getting smaller week by week. It has been for years but sometimes you can sense it. What i mean by this is losing your life skills, as well as your social life getting smaller. I am so grateful to have so many "Virtual" friends, so very very grateful, but heres just an example of what i mean
I used to go to lots of quiz nights, but because of my sundowning i am unable to do so anymore. Close friends are going to one a week at the mo and we would dearly love to join them but cant because i`m not well enough at that time of day / night, i feel,as if i am losing half my life because after a certain time, most nights anyway, not all, i am unable to go out, and on the nights where i dont have a bad night, this illness is so unpredictable you never know when, or what time sundowning will happen, so frustrating!!
i often sit here at my computer, trying to think how i could improve things, how i could change things for the better, and at every turn it seems dementia is there with a huge stop sign, Every street, every road seems to have a diversion sign on with " Lewy Bodys This way" Some People say ,
You are so lucky you have lasted so long and are so well with it.
"LUCKY ?? LUCKY ?? Since when was having an incurable terminal disease LUCKY!!
I am so grateful i have had this time with my family and friends and i hope it lasts as long as possible, but i am a realist and know nothing lasts forever, a forgotten skill here, a missed conversation there, a misunderstanding of what once, would have been so simple to understand, all these things make your world get smaller, ever decreasing circles as they say, until the day comes when i am unable to do much.That day gets closer each day, each hour each second, and there is nothing i can do about this, the feeling of helplessness is so overwhelming at times. I have always been fiercely independent and have always championed the "Underdog"
Funny how life turns out isnt it ?? Or is it ??
Norrms, Diagnosed with dementia 9 years ago aged just 50, shrinking slowly