The end is near
I know a lot of you haven’t heard from me in a while. That’s because I’ve been really ill these last few years.
The short version is that I have severe ME/CFS that is steadily getting worse. And today is World Severe ME/CFS day.
The longer story is that in 2020 during the Cape Town Pride Parade, I collapsed, just half a block from the start. If I tried to stand up I would become dizzy , my heart rate would shoot way up, and I’d fall over. If I sat on the floor I could recover. Eventually it took us about an hour to move the quarter block to Cape Quarter where I could get something to eat and drink, recover and get to my car. This mostly involved tensing up my body trying to push blood up into my head, remembering a trick fighter pilots use then pulling high g forces. When we saw the doctor on Monday everything looked fine.
In April 2020 after a rather draining phone call I had a 3 day migraine. Once it passed I found that I could barely stand and didn’t have enough strength to lift the kettle to make myself tea. And so I found myself bed bound at the beginning of lockdown.
Unable to do anything else I lay in bed and searched the internet looking for answers and eventually came across Jennifer Brea’s documentary, Unrest. This gave me a name for what I had and I knew other people had it too. Not only that but I had been showing signs of ME/CFS since at least my early 20’s. We eventually saw my local GP who did the usual tests which came back normal, and sent me to my Neurologist who because it was COVID times had a phone call with me in which he refused to entertain the idea of ME/CFS because “then there’s nothing we can do” while at the same time not ordering any tests and suggesting I reduce amounts of chronic meds that I take that he doesn’t prescribe.
We eventually found a doctor who has experience with ME/CFS and started a treatment plan. It was also found that I had Bilharzia which I likely picked up as a Cub or Scout. The long term Bilharzia infection may have triggered the ME/CFS, but given that others in my family have it too, there may be a genetic component too. Between IV treatments and medication, I got back some of my energy but it was still only enough for me to spend probably 85% of my time in bed. Then in April 2022 we found out about LDN(Low Dose Naltrexone) a drug that seemed to help a subset of folks with ME/CFS but it sometimes stops working after a while. We tried it and it worked phenomenally. From the first dose I had energy again and within a week I could run. I was back to 90% of normal, for 9 months. We don’t know why, but it stopped working and for a month I wanted to die.
Chronic fatigue is a terrible name for this condition. It makes it sound like you are just tired all the time. It’s so much more than that. This is a multi system condition affecting patients at a mitochondrial level. The mitochondria in people with ME/CFS stop producing energy the way they do in healthy people. Without energy the cells in the body cannot function correctly leading to problems with memory, speech, movement, malaise, pain, digestive issues, headaches/migraine, etc.
In Feb 2023 I was tested by a Neuropsychologist and my memory was found to be Severely Impaired, my Concentration was very severely impaired, and my executive function was moderately highly impaired. My problem solving was not impaired. My speech was also around a 1/4 of normal speed.
At this point I was battling to walk and we got me a wheelchair for when I leave the house. Over the next few months my mental condition improved slightly, my speech returned to normal, so long as I’m rested, but this means that my life has returned to being bed bound most of the time. I am able to get myself to the toilet still, but I barely have the energy to shower once a week. In the first half of the year I had enough energy to watch TV and sometimes play computer games. Unfortunately these last few months I’ve been battling to find energy to play games and found Minecraft quite fatiguing. Today I realised that I couldn’t remember when I had last turned on my PC. Lately I’ve been sleeping a lot during the day, then watching some TV in the evening, then going back to sleep. My migraines are getting closer together. And I’m starting to have more severe stomach/digestive issues.
Simply put, things are getting worse and there is no cure or really effective treatment for this condition beyond what I’ve already tried. In our extensive searching for info on ME/CFS we learned just how bad this condition can get. People like Whitney Dafoe who cannot speak or listen to another human voice without risking seizures, and have to be fed via a j-tube as they are unable to feed themselves. His case hits close to home for me as he was a photographer and one day handed his camera to a loved one, knowing he would never use it again. He also had several months of improvement on a new treatment just to be thrust back into this void of communication.
I have already lost the ability to pursue just about every hobby, passion and pleasure in my life. I do not want to live out my last days unable to tell my loved ones how much they mean to me. I have therefore signed up as a member of the Pegasos Association and plan on traveling to Switzerland to make use of their Voluntary Assisted Dying service in the first half of 2024.
This has not been an easy decision. There is so much more I wanted to do. Places I wanted to see. Things I wanted to create and try out. I know how some of my grandparents spent their last days, along with supporting my partners when their parents passed, and I don’t want that for me.
I ask that no one try to change my mind or ply me with religious or spiritual teachings, rules or sayings. I really don’t have the energy to deal with that and you will be ignored. Also anyone who knows me well enough, knows that I’ve thought about this long and hard and I know it’s the right decision for me.
What I would like is for people to share happy memories, photographs, videos, of our time together. If you have suggestions of movies to watch before you die, please send them my way. If you live in Cape Town or will be traveling to Cape town before the end of the year and would like to visit me, please give me or Pi a shout. I’m also available for the occasional video chat. I’m hoping to have a group get together, probably toward the end of this year as a kind of wake/goodbye. Hopefully before I degrade too much to enjoy everyone’s company.
Unrest Documentary - https://youtu.be/XOpyLTyVxco