Friday, February 3, 2023


Last night while I was acknowledging my "sensations" I've recently learned a technique to not call them symptoms - symptoms lead to many questions. I've always been good at questions that lead to more questions. The issue is for the last nearly two decades I've been dealt hundreds of questions with no answers. Damn, the lady was right "symptom" is triggering. A symptom takes you down the path of how to fix this problem. The problem however often in my case and most with ME and now Long COVID rarely has a simple answer - if one at all. So I was trying to be present and acknowledge the unpleasant sensation. Fuck, I don't think you are supposed to use unpleasant. Right, avoid positive and negative words like good or bad. Even though it really feels bad. But bad plus symptom tells the brain to be high alert move this to the front of the line and let's solve this pronto. Then what if there is no solution? Where does that lead you...let me tell you it leaves you in a far worse place than if you follow the pain-in-the-ass calm lady's advice and say this sensation is pressure, and hot and blah blah.

Honestly, I just got tired of trying to find descriptive words (even though there is a list she has to print out) but that would mean I would have had to go to the printer or back to the computer and find the list to then send to the printer and as you can see this is all getting very complicated and just saying I feel like I have never-ending flu and my digestive system is like a garbage truck and this symptom is fucking awful and I want it to stop and I want to find an answer and I'm quite used to this brain firing on a thousand cylinders to come up with a logical answer but there never is an answer. 

So lord I was tired. Tired of trying to remember how to handle these sensations to put my brain out of flight or fight. Well, it must have worked because instead, I began thinking of my high school geometry class and the compass. I loved geometry; I was really good at it. I still remember our teacher's bold thick red crayon/pencil and seeing a 98 and a WELL DONE !!! Damn it was nice having a problem with a solution. 

I thought about my life and how it began as a small circle and it just kept expanding and those circles got larger and larger. Then there wasn't enough paper for them so they went outside the lines and began to overlap. And that is how the years went. More and more circles are bigger and bigger. Until now and that broke my heart. Suddenly, I really didn't care about the sensation anymore. I began thinking of my life on March 17 2020 when I didn't know that everything was going to change from some sort of plan to the abyss and my circles would get smaller and smaller. Too small to connect with others anymore. And here I am living inside this very tiny as close as the pencil can get to the center of the compass just swirling around in the same tiny orbit and it has broken me into a million pieces on the inside. I feel like a shell of my former self, and most days wake up wondering that is if I sleep because the nights have become a mini little war how the hell am I going to do this again? How will I maintain this routine? The what ifs...the when this...the how will...then things start spinning. 
Photos from

You see movies and tv shows of people that are ill; they live their lives large because time may be limited. That is the cruelty of this disease the larger you live the more you are punished. I'm trying. I am really really trying until I suspend trying and surrender. Then I try again. But how do you try to solve a problem with so many hypotheses and yet no one to help you? This is the ultimate geometric equation of this disease; yet I learn more from other patients on Instagram than I have ever from a doctor. My arms are tired. I have sensations that I don't have the energy to find the descriptors. 

This problem is being shelved for tonight. It has no solutions only more questions and the little pencil on my compass seems to have disappeared. The only thing I know for sure is I miss myself. And it is really hard to live an authentic life when you don't even recognize who you are anymore. Your life was a kaleidoscope of intersecting circles that you created and bounced off with others. Now it is as small I suppose as the spec of dust we are in this massive galaxy. Maybe I should switch to Physics.


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