Monday morning, another week goes by

Forgot to order my medication and have run out! Although, I was thinking about the medication I take now that it is probably true that I do not have dementia. Having to wait for an appointment makes me feel weird to be taking meds for dementia still. Do I stop them slowly, or are they still useful with whatever diagnosis I end up with, especially as Extrapyramidal Disorder has a proponent of medicine induced symptoms?

Unlike me to totally run out of medication, but my memory problem hasn’t changed. My confidence has still taken a tumble, and I still get overwhelmed at many things; too many people around me, being asked to do things, sounds, lights, and the need for constant retreating to being silent in my own home to recoup is growing. The only thing that has changed is that I am becoming less mobile. My muscles don’t appear to work as well as they should, and of course the pain level throughout my body has increased, including the frequency of it. I cannot walk far without needing to sit, I cannot get up off a chair easily.

I also feel a loss of community, which I know is absolutely ridiculous, but I do. I felt I had support with all the wonderful people I had connected with living with dementia, but as I said before, now I feel a fraud. Not to say that there is still not something that is going to replace the dementia diagnosis with another. There is a sense of guilt that goes with the relief of ‘thank goodness I don’t have dementia’ towards all the people I know who do. This doesn’t mean that I will stop doing what I do in my community, because I do have a knowledge of what it is like to live with a cognitive disability and feel it is important for someone to speak out to change the lack of inclusiveness in decision making. I have witnessed some paid staff deciding what people living with dementia want…and I can tell you its not always WWII songs! There are also some amazing people who get it and provide an absolute lifeline of normality for many. So, Yes, I will continue working hard as part of my local town’s Dementia friendly places team.

So what’s next for me? I think I need to increase my arts and crafts activities. I need to get my mobility scooter fixed, it’s broken at the moment and is a sad reminder of the difficulties I have in organising things. Most of all, I need this appointment with the neurologist to find out what on earth is going on in my head and body.

Hopefully soon I can start writing about something else when all this is settled!

Thanks for reading.