Tuesday, 1 August 2017

Life changes at the diagnosis

I know they say you should never look back to things you have lost, but there are times when I feel it's not a bad thing,  because you understand the important things you have still got left in your life

However I still don't understand fully how I got to this stage.



I had been an engineer for 28 years running the maintenance department etc, along with two large budgets, as well as doing  estimating, and electrical work.

Then things went off the rails so to speak.

When things started to change during my diagnosis,  I had no idea how long it would last, or what would change in my life.

The answer to the first question was given by my consultant in County Durham,  "How long is a piece of string".

In other words, as my wife explained to me later, until we know, the correct type of illness, and how long the illness is going to take to  progress, we cannot tell.

We were also given a sheet of paper, with possible symptoms and problems which I could be faced with, but I guess nothing prepares you for the challenges faced after a diagnosis like this.

Nor can you imagine the changes which you could be faced with, but I guess this is because at this stage, you have already started your journey and don't really understand what may or may not come your way.

At this stage my daughter was expecting, but I had no idea whether I would see my grandchildren grow up or get to know them.

I  am now  blessed with 5 lovely grandchildren from my son's family and my daughter's family, which is a blessing on it's own, and I have to hang onto that as a positive.

Children can brighten your day up, although the noise can be hard to cope with if they get excited

However while I realised that  I could no longer remember how to do my Job as an engineer, like  electrical work or do estimates, I never expected other things to disappear from my memory.

How can you go from running two large commercial budgets, and estimates, to counting on your fingers?

I can look at something many times, and yet never see the obvious and that is hard to accept. How can you keep missing things which are so  obvious and under your nose?

I think the worst part early on, was realising that things were not always as they should be, but I also think it was realising that I am no longer in control if my life.

It sometimes feels as if my brain has a life of its own, and I am no longer in control of things.

But I suppose our brains are in control, and without them working properly,   we would be useless, but this does not always help

Realising that I am always making mistakes,  which would have embarrassed or annoyed me years ago, yet I can't do anything about this.

There are days when things like big numbers, and words , don't mean a thing to me anymore, and it's hard to work out why I don't remember them anymore
Yes there are days when I see a number and realise what it means, but these days are running out, or seem to be

Its very hard,  when things work one moment, and the next moment things are total rubbish 
I know that things change quite a lot with  this illness, so I can't always plan what I want to do a few days in advance,

Trying to read a book can be a mine field, because these days I simply don't understand some words any more, so I have to skip them.
But then I hardly remember what I  have read away way,  whether this is a good thing or not, I am not sure.
It has positives because I can read some books again and again, but still don't remember the story


So it's my good times when I will attempt to write anything, or use social media, but these days are running out, due to mistakes that I don't always see when writing.


I dread going out at times because I often say the wrong things and that can be distressing, because it's usually the opposite to what I  meant to say.
This often causes upsetting times with my wife at home, when it comes out wrong, but I dread to think what other people may think.

My grandchildren seem to make allowances these days, although I  think they understand that I make mistakes, as part of the illness. 
There are times when it worries me, just in case I say the wrong things in front of them

Understanding everything that's going on around me at times can be distressing, because I quite often misunderstand what is going, on or what has been said

I get annoyed at the television, then my wife explains that I picked it all up the wrong way.

This also happens in conversations, when I misunderstand what has been said, and then answer wrongly

Marble floors can be a total hazard on a bad day because I see things that are not there.
I know that it was all explained to me a few years ago, but it does not help  when your brain tells you something else.

I guess it's all down to the brains view of what it's seeing, which could be totally wrong in all reality.

Things like moving staircases can also be a hazard, because I am never sure when to get on, and if I stand in the wrong place when going down,  I end up being pushed by the rising treads.

All this adds to the pressure to get things right, and in turn adds to the agitation


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