Month: April 2016

I was feeling great.  My memory has improved, absolutely brilliant!  The medication I have been given (Rivatigmene)  is really working.  Yay!

Here I am just living. Living normally.  Nothing wrong with me.  Move along nothing to see.  Yeah I was diagnosed with Alzheimer’s in 2012 but I don’t have dementia.  It doesn’t really affect me, nah…     Actually I can hardly believe the diagnosis.  I am fine. I am ok, nothing wrong with me. I am normal.

Then:

My dreams have been horrible.  Every night the same sort of dreams.  I am trying to get somewhere but somehow can’t remember the way.  I walk miles, get on buses, trains, but then realise I am always going in the wrong direction.    The last dreams were about travelling, forgetting my luggage, my passport.

Rivastigmene does that but so does Alzheimer’s.

I scream inside every day that I am not affected by Alzheimer’s.  I think I am lucky because I have been diagnosed early and I still have much time before I am lost.  Lucky: think of that.  Lucky that I am relatively normal.  Lucky that nobody can guess that I have Alzheimer’s Disease/Dementia.  Lucky that when you speak to me that you can’t recognise the signs that I have no recognition of our previous conversations.  I am that good at that, pretending I remember.  I am that good at reading situations to understand what is going on.

Anyway, a month or so ago I went to join some really great research trial, but found that my memory was not poor enough to be included.  Gutted.  This particular research trial was producing some great results.

That’s okay I thought.  My memory has indeed improved which for me is brilliant.

This couple of weeks, I feel my memory has again slipped back.  I feel like I am just getting by, day by day.   I don’t like to let anyone know that I am feeling a bit ‘dull’ again.  I don’t want to acknowledge to myself that my memory is beginning to be a bit ‘fogged’ again.  It’s amazing how us people with memory difficulties mask them.  Isn’t it?

I have also realised that my understanding of descriptions have been compromised.  I recently had a conversation with someone about a journey.  “where does this bus stop go to”,  the answer was a detailed description about the neighbourhood and the complete routes.  I had no idea whether my question had been answered because I was so confused by the description of the bus route.  I then realised that I can only understand a yes or no answer to the questions I ask.  You can’t expect everybody to do that, and to have to explain that you can only understand ‘Yes or No’ to the answer you ask is asking something special that most people don’t understand.

FUCK,  FUCK…….. FUCK.

Sorry about that, but this is how I feel.  I am so frustrated because no one understands me, and never will.

I have Alzheimer’s without any apparent symptoms.  I have Fibromyalgia with very apparent symptoms, since I need to walk with a stick.  I want to scream and shout that my life is not over yet, but you do need to make allowances for me.

If I want to walk distances that I can’t cope with, then I will do it because I choose to.  If I appear not to have any organisation in my life then, don’t worry. Its not important to me.

I live day to day.  Experience to experience.  I to go the Therapy Centre to exercise on a twice weekly basis.  I have been given new medication from the Pain Clinic to cope with the pain from Fibromyalgia.  I enjoy doing my upcycling furniture at home, and crafts.  I still enjoy reading and reviewing online for publishers.  I enjoy helping to raise funds for the West Berkshire Therapy Centre I attend.

Every day I get up, read the news, look at what is being achieved for Alzheimer’s Research, and with my colleagues who are tirelessly working with Dementia Awareness.  Then get on with my day to day living…..hoping that today is not the day I need to contact my daughter to say that I feel wobbly and maybe she needs to make sure I am ok.

Right now I am okay.  Some days a bit wobbly but most days okay.