This is my second blog post today, making up for a day I accidentally missed; I am feeling quite annoyed with myself because I didn’t actually post the blog I wrote for Saturday 18th August! Yes, I know, my mantra is, Did anyone die? And if not, then it isn’t really a problem!!‘ It doesn’t always work immediately, and the frustration is simply something I have to work through. Unfortunately this is happening more often, with more things, as I also missed my Neurophysiotherapy appointment and Rehab sessions this week. The symptoms of dementia that affect my daily living capacity are changing, and like the Swan analogy, I’m still mostly calm on the surface, but paddling a whole lot faster below the surface of the water, as it much more challenging to get through my days and actually achieve even the simple the things on my agenda. Giving up is not an option, these changes have to be accommodated in some way, and with the support of my BUB (back up brain) we will find new strategies to manage them better. Of course, this does assuage my guilt and the feeling that I am becoming more of a burden to my loved ones. They assure me I am not, but is hard to accept the ever-increasing inequalities in our relationships. One son now has to help me with so many things to do with my computer, simple things I once could do for myself. This week, he called in after work to sort something out, and I laughingly referred to myself as Nana, as I used to spend hours helping her with many simple computing skills!! I guess if we don’t laugh, we will all cry…

Kate – I think you;re set such high expectations on yourself in EVERYTHING (we don’t even know HALF of what you do in your life) …… because I’m sure that’s how you have been naturally all your life.
But it’s a good time to sit back and reassess everything.
Take it from me – as someone who’s had to scale back a LOT of what I’d like to do because of horrific fatigue * – it IS possible, as you said you just have to reprioritise and think a bit harder about what you want to do etc.
I’ll email you about this …… if I forget then follow me up, OK?
* that stops me even being able to sit up on a normal chair to eat dinner …… I have to sit up on a chair for disabled people …. one with a full back and arm rests!! Then there’s the fact that I can’t sit at the computer much at all anymore, I rarely go out (see, it’s 10pm on a saturday night and I’m at home …. like I am for 365 days and nights of the year ……)
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PS – and it’s not just fatigue I meant to mention in the blog reply ….. it’s also the bad memory and having to do things to make sure I don’t forget anything. I have been commended for things I do to help myself remember/not forgeet etc…… so we can talk about this too, OK?
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Keep it up, you’re doing great!
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thanks… I’m still not quite over not having posted that blog from last Saturday though!! x
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