Monday 26th October 2020
Well the clocks went back yesterday and it seemed so strange when it was dark just after we had eaten tea. It almost feels claustrophobic as if the darkness has consumed my outside world.
My nights sleep was rubbish waking at around 12.05am then again at 1.30am, 5.10am and finally at 7.15am. I really don’t know why…I was coughing at one point well I think I was…I did have some water next to the bed, so I had been in the kitchen to get a small bottle of water.
I began thinking today about sleep or lack of, also the extreme tiredness from zoom…social media…generally screen time. So can we over work our brains? Is this why lots of us with dementia struggle with sleep…headaches and exhaustion. Are we trying too hard to please others…to show others that we can still do things. It is a tough one as I know I am still in the process of acceptance of my diagnosis and almost trying to prove that I am still Me! Gail! Not just that person with dementia.
Before the lockdown i attend meetings a couple of times in a month, with maybe a training session to take part in or a dementia hub to assist with. Now I have a zoom meeting nearly every day some days I have 2. I am trying to keep the meetings to a minimum now, but I still have a fair few Zooms to attend. I also have my blog to write which takes up a chunk of my time. Then there is preparation work for some of the meetings and so on. The zooms can sometimes be quite intense and on the other hand very enjoyable and I don’t know what I would have done with out them.
It’s funny how my dementia journey twists and turns as I find my way. Sometimes being led down wrong roads or just roads that lead no where, so thenI have to back track to find a new path. Some will tell you or they want you to believe that there is not much in the way of support. Why I have no idea, as joining groups testing them for yourself is a great way forward.
My first group I joined “Freshers” which I was truly thankful for, as I was in contact with people like me. We all had dementia.
Then the local memory clinic set up a group “YoYo” still very new and it’s ok but in the early stages.
I was led to believe that these where the only groups available to me so I believe what I was told as I had no reason to question
When lockdown came, that’s when I went searching. I began to think there has got to be more out there somewhere. My search started in a big way, looking through social media until I came across quite a few groups. I can remember signing up to a webinar and a group on where there would be discussions on dementia topics…I hesitated and clicked to sign up. Wow this led to other things…other groups and before I knew it within a matter of months I was meeting and joining in with all sorts of interesting and inspirational people…people like me…they all had dementia.
One of the things that stood out for me was the people who where facilitating the groups, they let us speak! They let each and every person with dementia have their say, and they listened…I mean really listened.
I have met so many people…unbelievable really as I don’t think I would have met them but for lockdown. As would still believe there was nothing out there only a few local groups.
I think what I am trying to say is don’t get cocooned in a small world when there are bigger things out there. Look and you will find…choose the road you wish to take, the one that feels right for you! This is your journey! Do what is best for you!
I am now a Dementia Diarist…Involved in craft projects…Deepness Dementia Media…YouTube videos on crafting. Invited to speak on Dementia related subjects. I have been part of a few craft zooms showing how i make my cards and of course My own blog and a few more things in the pipe line.
So am I overworking my brain? Just to prove I can still do things…am I doing too much? Will I make my dementia worse? Who knows!
All these things give me back a purpose, keep me occupied…my brain thinking…working and functioning, The only thing for me is managing my time so I’m comfortable and not creating fuzz and headaches. Also doing things that I want to do, things I enjoy. I am looking in my diary more now and saying no in the nicest of ways. I am trying to be kind to myself.
Now I have rattled on enough, I will share some photos from our morning beach walk
It was wild this morning with plenty of sea foam around. A fellow dementia diarist Wayne reminded me of the Cresta Pop advert ” Its Frothy Man” which brought back memories the brilliant singing bear.
So I will leave you with a couple of links to the cheery Cresta singing bear
Don’t forget about Deepness Dementia Radio