2 Years on

Well, here I go again. I have had this blog for 4 years and this is only my 3rd post. At least I have been consistent, with my two year postings, haha.

I am in a very different space to previous post, my last being two years ago. I am hoping to be able to do this on a more regular basis and to feel confidant enough to do it in a public space, but we’ll see how that goes.

In my last post, I spoke of the shock of my diagnosis, but 2 years down the track, I am now at peace. Having a diagnosis of dementia is not something that I could have seen myself living with confortably, but now it is different.

I am very lucky that I am still functioning pretty well.  Of course there are variations on a day to day basis, but on the whole I can still do most of the things that I want to do, just slower and more clumsily.

I became a dementia advocate, around 18 months ago, and now speak confidently about living with dementia in open forums. I am heavily involved in a number of research programs, and sit on numerous committees. I have many friends, living with dementia, as well as my longer term friends, who on the whole are understanding and supportive of me. My friends who either have a diagnosis of dementia or support someone who does, are like a family. We get each other, which give us the opportunity to speak and act freely without fear of judgement or reprisal.

I am aiming to keep these blogs short and to the point, so won’t drone on too much today. If I am able to folow through on my plan, I wil be writing short contributions every couple of days, or when I have something interesting to say, so hopefully will build up a fuller picture of my life, as it now stands. I fear that my posts will not be as professional or interesting as many of my cohort, but I will do my best to give a good representation of how it is to live with dementia. Be patient with me.

An unexpected change

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Well, more than 2 years has past since my last blog…no-one could accuse me of being a regular blogger. I  originally started this blog to reflect on living life in my retirement

In October 2015 I was diagnosed with frontal- temporal dementia. Of all the things that I could have been attacked by, it had to be this. My brain…one of the only parts of my body that I really valued is going to take off and leave me behind. I want to cry when I think about it, but how many tears can you shed?

After the initial grief response, which lasted around 6 months, I have been able to take some steps to prepare for the future. I talk about it (with anyone who will listen). I say I am not looking for sympathy….I hope this is the truth.  I need understanding and some support…not so much right now, but I know the time will come!!!!The knowing….a blessing and a curse. A blessing because I can prepare myself; put some strategies in place; plan my future etc.  A curse, because I know what is coming…just not when!!!!I recognise the skills that I am losing, I know what I can’t do today althôugh I could do it yesterday.

The plan is to live in the moment…enjoy each second and celebrate the positives.  How hard is this? How hard not to reflect on how things were.  Almost impossible to not think about what is ahead. I sound very self assured when I speak to others…so self assured….so much bullshit. The fact is I try to fill every second, not just so that I don’t waste it, butto keep my mind busy.

I’m so tired. Mostly it would be so easy just to close my eyes and lie down somewhere.  Right now, too tired to even blog, so Goodnight

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