I started to write this in March, then in April, we are now staring at the end of May so thought I would try to write and update.
Well its been a while since I sat down to write, life has been busy, moving is a lot of hard work. Everyone knows that I have been the queen of moving, but this move was likely the one I have enjoyed most. This move was taking me into a new chapter of life, rebuilding a new life with the love of my life, so although it was a great deal of work, it was easier to do, when you know you are doing it is all positive, every aspect of it. So it is all done, we had our first opportunity to relax last weekend, wow did that feel good. I was blessed to have the help of friends, and to spend some time with them as we got the move done, it took three trips but I never felt like I was leaving anyone, it felt like I was just changing locations, and it feels good to feel that those friends will always remain. I am extremely grateful to those who helped and those who popped by to give and get hugs and send me off with well wishes.
April 2023/This month I will get back to my advocating work as well as some meetings, it was too much to try to manage it all, while trying to relocate and get settled. I knew that I could not push to do everything or my dementia symptoms that have been so manageable would rear up and I would pay to high a price. We learn the longer we live with our diagnosis how to manage things in our lives to try to alleviate stress and the chaos it brings to our world. Stress is so dangerous for people in general but for people with dementia learning to recognize the things that create manageable stress is vital. My brain fogs have been minimal since Wayne and I reunited, being surrounded by love, just knowing that I don’t have to fight so hard each day, because I was alone, knowing I have the support has allowed me to relax more. I am so deeply grateful, for all that I have in my life today.
I have just returned in the last couple of days from the Vast Conference in Montreal, of course I have a real interest in the vascular work being done. Having Small Vessel Disease and Cerebrovascular Disease, significant in my eventual diagnosis of Vascular Dementia. The reason it is easy to understand my TIA’s. I find the work they are doing fascinating and I am happy to be working with researchers to this end. I am fascinated by the brain, the more I learn about it the more it intrigues me. I have also learnt that it has so much control, really all of it, but that it is my best interest to play nice and give it what it needs and wants, it then allows me to continue to have better days. If I deviate, if I “don’t play by the rules”, I pay the price, the price is high. It sounds like a silly way to think about managing an illness, but truthfully it is easier to take all the knowledge and figure out how to make it make sense in the most simplistic way, so for me that how I have done it. Yes I can listen and have conversations with researchers and scientists, I can understand much of the language and jargon, but we are teaching them how to relate to people in lay mans language so everyone can understand, we are getting there, we are sitting at more and more tables, the science world, academia, seems willing and wanting to engage with us, we have so much to share, it is an exchange of knowledge, it will hopefully end up with some real advancements in the future. No none of it will happen in my life time, or at least I am not expecting it to, but I am working on helping them because even if it won’t help me, it will help the many more who will be facing a diagnosis of dementia in one form or another. It is for all those who I am working on behalf of. The benefits to me are that I am valued, I am contributing I have had many opportunities with all my advocacy work. I have had the opportunity to meet so many many great people, to travel, although I stick closer to home, to Canada these days. I have learnt, about disease from different sides and views, I have grown, I have the ability to be open to look at things from a different perspective.
My own illness, is sitting, not getting worse, holding for how long I don’t know, each day is precious and fragile. I am always aware that in an instant that it can all change, but I also know that, that is true for most people although most people live is if they all have lots of time. I live each day as fully as I can. I realized that I had been talking about living well with dementia, but I wasn’t really doing a good job of it. I thought I was but I had lulled myself into thinking that, but being ” married to your computer”, being at meetings 7 days a week, sometimes many meetings in a day, left little time for actually living well. Don’t get me wrong many times and many days those meetings were my saving grace, and in the beginning those meetings and meeting others was what propelled me to doing all the things I have done, it is also the thing that helped me understand that living our best life, is something different for each of us, and sometimes we need to submerge ourselves in it until we are ready to come to the surface again, and then we start to reform our life, we start to redefine what we work and when, and if we are lucky we truly to start to life fully again. My life since diagnosis has been a journey I never expected to be on, but I can say I am not sad that I am for I have gained more than my illness has been allowed to take from me. I will continue to strive to live my life fully. I am happy, I am loved, and is there anything anyone can hope for in this life.