Still here

It is very hard for me to get things done. I thought I should start some kind of 'to do' list on my phone, since that is usually close at hand, but the couple of apps I downloaded for that purpose were not what I had in mind. I wanted something like my Mealime app which keeps my grocery list. Finally I decided to just use Mealime, prefacing each 'to do' item with the words "to do". Mealime files them under "Other", works for me.

I vaguely had the idea that I would post to this blog after I got a new computer, since the old one seemed to be failing. Well, I got the new computer but the process for setting it up is proving to be complicated. It is still on the To Do list, but falling further down as other items become more urgent. So I am posting this from the old computer just to say "I'm still here."

Worst winter ever. My illness is worse and as I am 3 years in now, I have no prospect of improving. I know this to be Long Covid but cannot get diagnosed because there is no bio-marker nor is there any agreed-upon criteria for diagnosing it. In fact, most doctors around here do not admit to its existence. Until there is a diagnostic bio-marker most doctors will tell you that it is all in your pretty little head (meaning psychological not neurological) and take an antidepressant for it.

My GP referred me to a psychiatrist who asked me two questions: How do you know Dr. P (at the beginning of the hour) and Have you any questions for me (at the end of the hour).

He told me:
1) post-viral syndromes don't exist and he knows this because he grew up in Ireland and Brucellosis (I thought that was a disease of cattle?).
2) Brain Fog doesn't exist.
3) I should quit chasing specialists for a diagnosis.
4) When I told him that my experience with antidepressant side effects was pretty awful, he said, Well even Tylenol has side effects. 

Since he never asked me any questions about why I was there or my state of mind, I assume he got all of his knowledge of me from my medical record. Great.

Now that many countries are funding research into Long Covid, a lot of potential causes and bio-markers are being suggested. Maybe sometime soon (i.e., within the next couple of years) they will narrow down on one cause and one bio-marker. Here in Nova Scotia it will probably entail investing in new technology to detect that bio-marker, so say another couple of years. That means Long Covid will go from being a syndrome (a collection of symptom criteria) to an actual disease, as MS did when the MRI came into play.

But that's not a cure or even a symptomatic treatment. So another decade or so. I am 75. In 5 years I may get my illness recognized, and in another decade and a half there may be a treatment. Right.

One day on FB (I rejoined in order to access some support groups) FB recommended I join a group dealing with The Afterlife. That made me laugh. With the tinnitus, brain fog and dizziness I don't feel like I am part of the real world, I am observing from inside a bubble constant noise, inability to think properly and unsteadiness, The BesideLife.

There is no outward sign of illness. I ace tests of my memory and executive function, but cannot follow a recipe or even remember the order of steps to make my breakfast. Words escape me. My longterm memory feels like old lace rotting away. I spend most of my time on my daybed, with breaks to take Princess for short walks and the occasional shopping trip.

I got an Accessibility tag for my truck and I bought a wheel chair. It was okay, but I need something with more features so I am sending it back to get a more powerful and more flexible chair. I am looking at my e-bike and kayak wondering if I should sell them. I've started VON Frozen Favourites delivered to my door at a very reasonable price. I now have a twice-monthly house cleaner.

I am gradually eliminating things from my life. The garden is probably going to go. I stopped making my bed. I don't socialize. My opinions and views on this disease are a bit too strong for most of the LC support groups I joined so I am slowly eliminating them as well. They say that when you live in isolation your brain gradually rewires to accommodate that, making re-entry into the world of people more difficult. It just feels like too much work, too much bother. I have one friend that I try to visit regularly, and according to my Garmin watch 'Body Battery' time spent with her is as restful as a sound nap; I guess the effort to maintain some kind of social persona is work, and I don't have to do that with her.

Yesterday I was in my driveway and my next door neighbour came over to ask how I was, in a concerned tone indicating that she really wanted to know. It was a bright sunny warm day and I am now quite sensitive to light and I was leaning against my truck in order to talk to her. You know how you feel when you have the flu with a high fever? It was like that, a real struggle to gather my thoughts and figure out what to say and what not to say, all the while clinging to the truck to stay upright and closing my eyes against the sunlight.

The snow is gone and temperatures have warmed up. I see young able people running and cycling and walking briskly, even swimming (the ponds are still way too cold for us older folk but for young people it is great for scampering in and out screaming about how nice it is while clutching their chests in what looks to me like extreme coldness). Princess has discovered her inner lab and goes crazy in the water chasing sticks and wanting to be part of the crowd of young people having fun. She caught their frisbee in mid-air and ran off with it, obviously hoping for someone to chase her and throw the frisbee again.

Given that this is my new life, I would like to re-invent myself within the confines of disability, but I don't really know where to start.