Hi, this is a problem I never thought I would have, and yet lately it has become more apparent. I am used to people saying “he looks so well” or “You wouldn’t think it would you?” when they hear about my Lewy Body`s dementia or see me after a short absence, and I have also been told often that, “If I didn’t know, I would never have guessed”. Sometimes this is a great compliment and yet sometimes it can work against you, hard to believe I know, but true.
As we step up the gears regarding Dementia friendly communities and trying to help Torbay become the first ever Dementia friendly resort we have advertised for more volunteers around the bay because this week on three occasions Elaine had to remind one of our close family friends that I am actually ill and I can only do so much. This started me thinking, as it does LOL.
Because I sometimes look so well and sound so well, people, even my closest friends sometimes forget that I actually have dementia and plan things to do without thinking about it. Thankfully, just before I nod and say YES!! Elaine usually steps in! Believe it or not I am finding this very hard to write about, not because I am having one of my “OFF” days but because I am not too sure about how I feel about it.
YES! I want to be treated just like anybody else and yet when I say or do something out of the ordinary I don’t want to be reminded of it! Is this a case of me getting worse and I don’t want to admit it? I really don’t know? Or is it me being a little bit touchy about my illness on my OFF days? All these emotions are running through my head at the moment. One thing is for sure is that I am making more mistakes than usual on the computer and even spell check doesn’t make that much sense any more. Yesterday I noticed as I sat at the computer I was thinking about Bolton and for a short while I couldn’t figure out why we would have to drive five hours to get there as we already lived there!! It’s just an awful feeling, sitting here, Knowing you are losing your mind and yet seemingly perfectly normal to everybody else.
As you know I have often stated that as the day goes on, the worse I feel, and yet once in a while I feel perfectly ok until late evening!! Mind you, the nights never differ (Mores’ the pity!!) I still wake screaming like a banshee, shouting and fighting for my life until my darling Angel either brings me round or settles me back down. So what’s the answer? I only wish I knew. I have asked my friend (or rather Elaine has) to be a little more patient with me and not to expect too much. Also, and this is so hard to say, we have talked about handing over the reins next year to someone else to organise DAD day and other projects, as I say, we have only TALKED ABOUT IT!! LOL, anybody out there take size 10 shoes???? LOL
Yet, by handing the reins over is that my way of saying “I give UP??
NOT A CHANCE OF THAT HAPPENING!!!
But this year really has been a busy one and will continue to be so. What will next year bring? Nobody knows, what will the next six months bring?? No idea, but I do know I will carry on as I am, for this year anyway and see what happens after that. I am as excited about the next six months as I was about the last six months, that’s for sure, but, if I do make a few mistakes along the way, or I am not on the computer as much as I was, please don’t worry, for once I am taking notice of my wonderful family, and my wonderful friends of course. You are all like family to me, it’s a very strange thing this face book thing, but it seems we have all been through so much together, and I know for one, I, or we, could never ever have gotton through it without the support of each and every one of you, for that I will always be forever grateful.
See you in a week’s time, all our love, Norrms and family xxxxxxxxxxxxx
