Documentation

I have decided that it is going to be important to document things that I am noticing since this miracle of miracles happened two weeks ago today. Yesterday I was asked about what I was noticing and seeing and others described what they were seeing. I had a friend call from out of town, she said in knowing me over 4 years and spending a lot of time with me and after being ready to jump on a plane to get here not so long ago, ( my last hospital visit ) maybe 6 or so weeks ago. She told me in all honesty that she thought that I was going to die. I admittedly had to admit that I was feeling like I was on the way out as well. She said I sound better than she has ever heard me. I told her that when this happened I felt like maybe this was the upswing before the walk towards death. I feel totally different these days, if I ever in my life felt like this I don’t remember a time. But things I am noticing and being unsure if they will be lasting or not the need to document not only helps me but the doctors as well.

Today for example I went to the store for the first time in a very long time, and even if I went I normally was very careful to plan to go on the less busy days at the least busy times, so that I could have a better shopping experience, normally the noise of the store, the business of all the people was overwhelming and I couldn’t manage it. Today I went at the peak of the day, did my shopping without thinking about it, without needing a list, no stopping wondering what I was there for, just bought my groceries and went through the till, even managing a conversation while I did that. I got out to my car, and then it hit me, what I had just managed to do, I sat in my car in a stupor, the realization of what I had just accomplished overwhelmed me, I sat marvelling at how this could be happening, at the enormity of it all. I went to the next store had a great conversation with one of my old neighbours, we’ve made a plans for a dinner date. He has always been supportive and helpful, he was happy to see me “looking so good”. I took my time in the store trying to enjoy it and take in what I was managing. The line up was long at the tills, but I just enjoyed watching the people and listening as we moved along. These are things I have not managed for a very long time, and anyone who in recent years has attempted to any type of shopping with me can attest to the difficulties it created for me.

When I arrived home, I decided to pull the car up to the door and bring stuff up the stairs ( no elevator where I live), has been a real issue this last year and in fact a month or so ago when I last shopped I had to have a friend come and bring the stuff up the stairs for me. My fatigue and that my lung capacity was so bad I could not do it for myself, some days it was all I could do to get the dog out side. Fast forward to today, I carried the boxes and bags up stairs one at a time and then two cases of water one at a time. The I went and parked my car, came up the stairs again. I started to put the groceries away and suddenly I stopped once again, I looked, then I counted the boxes and bags and went and sat down in shock as I realized I had just done 7 trips up and down the stairs carrying groceries and then an 8th time to come in. I phoned my friend, who was here the week before all this happened and she said its no wonder its overwhelming me, after seeing how I have been the last couple years.

It’s such a drastic change all so suddenly. so the documentation becomes more important than ever I think. Its 4 in the afternoon, two weeks ago I would have been on the couch or in bed already for hours. I just got back from taking all my recycling away, and sat down at the computer to do this. I took part in a presentation earlier today. None of this possible two weeks ago. In a week I see the doctors again, will be good to hear more from them and have more documentation for them.

I know my dementia has not changed, what has changed is how my brain as well as the rest of my body is managing. Did the vaccine trigger something else, some other event in my body/brain? I cannot make sense of any of it. For now I have to just try to find a way to settle with it, trust it, thats a big thing, bigger than I care to admit, trust it. Once I navigate that piece maybe I can settle into enjoying whatever for how ever long I get to. For know I spend a good part of each day marvelling at it, at myself, and feeling overwhelmed.