I haven’t, by any stretch of the imagination, had a horrendous day but I have had bad days and I know worse are to come.Recently I had a bad day where Alzheimer’s won for those 24 hours – I think I got my tablets muddled (or at least I hope that was the cause) and I know not to do it again.
I don’t know if I’m alone in thinking that you can feel the difference in your head when you’re having a bad day. I’m convinced you can ‘feel’ the disease inside your head. Your head feels inflamed and fuzzy.
The analogy of dementia used in Dementia Friends training is that of Christmas tree lights. When you get them out each year some don’t work or there are loose connections – it really is like that. My consultant, knowing I worked in IT, likened it to the amount of memory on a PC and how that affected performance. What he didn’t consider is that, even though I’ve worked on an IT system for 10-15 years, I still ‘don’t do technical’. For example, if my PC seems poorly I ask one of the team to take a look at it! I think I’ll stick with the fairy lights – I understand that analogy…
Imagine going in and out of consciousness – it can be like that – one minute you know exactly what you’re doing and the next you haven’t a clue what you’ve just done. I’ve also now found a way of dealing with the hallucinations that are mainly induced by the drugs (I hope!). At present these usually happen in the night – or at least I think they do! I wake up in the night and see and hear the most weird things. ‘The ‘weird’ is the clue. If my mind isn’t sure whether it’s reality, or if it seems odd, I tell myself it’s simply the drugs playing tricks and accept that it will soon go away. The ones that catch you by surprise are harder to decipher. I had in my head one night that my mum was alive. My mum has been dead for many years. I had to fight with my mind for a good few minutes before winning and coming back to reality.
The feeling of mental exhaustion becomes a regular occurrence as I’m continually trying to fit in with normality. I always fall asleep on the bus on the way home from work. It’s a 90 minute journey. I used to sit quite happily listening on my headphones to the radio. Now my brain is simply exhausted from the simple task of listening and trying to take in everything at work. On bad days I tell myself that tomorrow will be better and at least for now, I can decipher the good from the bad and make the most of the good – for that, I’m thankful:))
My bus ends up on the coast – one day I’m sure I’ll wake up and see the sea –ha!