I am admittedly struggling on some levels, which I will talk more to later in this blog. First however I will tell you about my recent events, last week, I had another ( the last one a couple months ago saw me in the hospital for 5 days), episode of severe pain very low abdominal pain, followed by profuse sweating and feeling like I was going to throw up, trying not to, face in the sink dosing myself with cold water, the next thing I know I wake up on the floor, I managed to get to my bed, didn’t call for help, hospitals are busy enough with covid etc, as are the ambulance services, figured I would just lay there, hoping I would be ok. I slept on and off, stayed there until morning, had a couple of very quiet days after that, trying to once again slowly regain strength. Yesterday was finally that good day again. Follow up will happen on Tuesday with the Doctor, but given the stuff they are currently looking at with my blood flow issues to my muscles etc, and the impacts to my lungs, and other organs, I am of the thought that this too is related to that. Happening once could have been a one off, but happening twice is indicating something else. I am bad for not getting myself to the hospital I think in part because I know it usually equates to a fairly long stay. It is not my dementia that is the problem it is all the complicating issues that are there, the dementia is actually the part I can live with comfortably, for I don’t care if I forget things, I don’t care if I have to find new ways of managing day to day. I have managed to rearrange my life to accommodate all those things, but dementia is about so much more than memory loss, and for me with my dementia being vascular based, the complications for me are immense, those things are a problem for me, they are the things I struggle with the most. The blood flow issues, the issues with organs, kidneys, liver, heart, etc, because of blood flow, issues with my vocal and swallowing abilities, the fatigue, on and on the list goes, those are the concerning factors. Thats why I wish people had a better understanding of Dementia, because it is so so much more than people are aware of. But each day I wake up I say Thank you for another day, I am grateful that I am still here, I sit in deepest depth of gratitude that most cannot fathom.
Last night, was another piece of my dementia that people don’t understand. I spend last night, not asleep but not awake, it’s like being in a trance, like some kind of hypnotic event, it doesn’t frighten me anymore, but I am acutely aware that somehow my body is sleeping and resting, yet my mind has been transported to other places, thoughts are so clear, I can see things, understand things, my eyes are open, its un-describable to most, such a strange sensation, a happy sensation. I actually was able to see this blog completed during that process, even though I had not even started it. An altered state of being, most won’t or can’t or refuse to believe those things happen, it does not happen often, but when it does I can see that I am neither awake nor asleep, I can see the thoughts. I remember travelling through my thoughts, coming to some realizations, thinking about how I had to come out of that place as daylight approached, I remember at one time it being 342 am, but then I continued in my thought traveling, time traveling, I came back into the real space and time at 543, I got up made my coffee and thought about the night, I wondered if I may be more tired today because of not sleeping, but its not that I wasn’t sleeping, because I also wasn’t awake. It is a beautiful place to be when I’m there, happens infrequently but peaceful when it does. I also woke to knowing there is some things I need to do.
The first thing I did was talk to God, ( or whoever you call it, the spirits, the angels, the universe), I talked about knowing that I was and am lonely, lonely for the companionship like that that I had with my husband, someone that you just like as a person, someone you just want to spend your time with. I talked about knowing that I was pretty sure I was not but here to just be alone, so I asked for helped in bringing the right person into my midst to change that, to set up the circumstance that would allow for two souls to meet. I am not lonely in the sense of being sad, or depressed or struggle spending time on my own, thats not it, it’s at a deeper level. I am also looking for my forever place, I am grateful for where I am it is safe, it comfortable, we have a sense of community here, as there are only 10 units, but it is not my forever home and I am deeply aware of that. So my my heart and soul is looking for its forever home.
I am also really focusing on my spring plan, its a forward motion, and they may tell you that you should get your affairs in order that you should prepare for the end when you are diagnosed, but truthfully they should be telling you to get busy living until the end. So for me keeping things in a forward motion is the best way to ensure I et busy living instead of getting busy dying. So I am busy putting my plan into place, and I am so thankful for those who are willing to help me in my planning. If I die before I can do it so be it, if I try and fail, it doesn’t matter, what matters is that I am not sitting waiting to die. I am excited for my spring plans and as it comes together, I will write about it.
The next thing I have to talk about is a conversation I had with a lovely lady who I have had the pleasure to become acquainted with I who I now call a friend, someone I have yet to have to pleasure to meet in person, but hope to in the future. I have talked very openly to how I feel about the use of technology the good and the bad, and recently with our events in this province, it became abundantly clear to me that we have set ourselves up for catastrophic failures and inabilities to manage if there is ever a system wide failure and how possible that is, simply events like Russia shooting down satellites that caused debris to create a dangerous situation for our communication systems. We are so reliant on technology now I am wondering if we have crossed a line of becoming too reliant. Our gas pumps are computerized now, how banking, our medical systems, even our vehicles are so highly computerized now the possibility of a complete failure scares me more than most anything. Nope not spending my life fretting about it, instead doing what I can to ensure it would be as minimal as possible for myself. I know most people think that it could never happen, but as in all things often that is our own need to sit in a false sense of security. I think those who are living off the grid are really trying to avoid getting caught in the mess when it does happen.
But back to my friend, she was talking about the use of robots in certain settings, like care homes, which everyone knows I am opposed to, unless they are being trained to clear tables, do laundry, do paperwork, but I am adamantly opposed to them being used in any capacity that involves direct contact with patients. My reasons are many and long, but my friend Debbie summed it up well when she sent me a quote to use here and a picture that truly sums up what a robot cannot do. So Thank you Debbie for your words and your friendship: here is the quote in full: I have taken out the name and location for privacy reasons.
“Christine, This is XXXXXXXXXXXXXXXXXXXX Her family took the picture and did a family tree (a little on the back). Tell me a robot can do this! To all those techy people who think robots are the end and be all, tell them for me and you can quote me, “BALDERDASH!”
This has been a long post today, I will end by saying it really is a pleasure to share my thoughts and my journey with you. I hope you all stay well and have a good week.