CONFUSED? You will be, I know I am!
So there I was watching the TV last night when suddenly I remembered we hadn’t been somewhere, I sat up bolt upright, and as I snapped myself back into reality I realised it wasn`t real, it was just my mind playing tricks with me. How do I know? Where we should have been was years ago and a place I have never been.
If this is hard to understand, what I am trying to say is, in my mind, we should have been somewhere, there and then, maybe to meet someone, who knows? The vision in front of my eyes was as clear as day and I really felt as if we were late. As I came out of what I can only call my “Dream Like “state, I knew then it wasn’t real and the first thing I thought was “Have I been asleep? But no, so what then? It was then I realised I am starting to imagine things. This is happening whilst I’m still awake and has happened a few times now, so is this what they call hallucinating? I had a day a few days ago where shapes and shadows flew past me at great speed and made me jump and shout out! Much to the annoyance of people in the local cafe, but I stopped worrying about what other people think of my illness a long time ago !!LOL
This is beginning to happen more often these days and is without a doubt very frightening. Sometimes I just sit and stare; I wonder what is real and what is not, I go quiet and then other times I am so loud Elaine has to ask me to be a little quieter, not that it bothers her, but it seems to bother others around us when we are out. For a few nights running now, just as “My Angel” Elaine has come into the bedroom at night time (I go to bed an hour earlier to listen to music) I have shouted out in Protest!! Just for that split second I have no idea who it is entering my bedroom!!
I am told I am more verbal during the night now than I used to be and I do know I have an urge to get out of bed at all times of the night. It’s poor Elaine that has to reassure me in the wee small hours that it’s not time to get up yet, get me back off to sleep and then try and get some sleep herself. Do I remember any of this? Sometimes yes, sometimes no. There is no Rhyme or reason to this disease, but I always remember June Brown AKA Dot Cotton of EastEnders Saying” Having Lewy Body’s disease is like having two Diseases, you HAVE Lewy Body`s and YOU KNOW you have Lewy Body` s, this is so true, her dear husband died of this terrible disease.
Whilst speaking to a friend of mine today we discussed how long this disease had been around, and it got me thinking. Over 200 years ago if you stood there and spoke to someone who no one else could see, what do you think would happen? You would be called a Witch or a wizard and it could get very hot!! So, actually, I think this disease has been around since the dawn of the earth and it’s only now we are THANKFULLY beginning to understand it a little. So what of the future??
Yesterday we put in place a new Chairperson of the Torbay Dementia Action Alliance, a Councillor from Torquay who is about as passionate as I am about raising awareness. I am, and always have been Vice chairperson, it’s just that for the past few months we have been without a chairperson and I have done both jobs!!LOL Things like this must be put in place as none of us can go on forever, and my promise to each and every one of you is nothing will change, not yet a while anyway!! But when it does, and it’s time for someone else to take over the reins I will make sure they are fully aware of WHATS EXPECTED!!
Until then my friend, through all the Hallucinations or whatever this GOD AWFUL disease throws at me I promise to try and keep on smiling and doing what I can, for as long as I can.
All our love, Norrms, Elaine and family