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I've kept my mouth shut since this all started as I didn't want to alarm people more than they were already feeling high panic... Now that you are starting to settle in, and some, are getting antsy, its time to bring up some hard truths that you all need to start taking seriously
My chronic fatigue syndrome followed a viral infection in fall of 2016. It turns out studies are now suggesting 80% of cases of ME/CFS are initiated by infection, or are in other words 'post-viral'.
When this all started, I was terrified for many people dying, as they do in plagues, but I also started getting terrified for those who got it and lived, and what that would potentially look like for untold number of people
So much of the media talks in binaries: SURVIVED/DIDN'T SURVIVE, and not 'life after pandemic when many will be most likely disabled for who knows how many years to come" and what that means individually but for society
particularly when we knew nothing of this disease's potential impact (and I was also thinking of many other post-viral diseases that took decades to discover as the cause of disability such as encephalitis lethargica as featured in the film AWAKENINGS)
Now it is coming out that many COVID-19 survivors are experiencing ME/CFS symptoms: incredibly debilitating fatigue, brain fog, pain, and all the fun whacky shit that comes from those debilitating illnesses. BUT WAY WORSE
First let me tell you how CFs has affected my life
Prior to 2016, I was VERY much the opposite person I am now (and not in a particularly good way). People can testify i was the GO-GETTER OF ALL GO GETTERS;
Prior to 2016, I was VERY much the opposite person I am now (and not in a particularly good way). People can testify i was the GO-GETTER OF ALL GO GETTERS;
I was always on the move, high-octane LARGEST appetite for life; i danced for hours on the weekend, wrote and produced like a beast; community builder; met usually 3 x a week for lunches, etc. to mentor emerging talent in my spare time... I literally DID ALLLLLL the things
I worked between 12-16 hours a day, and often more on the weekends -- when I produced TO Webfest 2014, worked over 100 hours a week (as a said not the BEST lifestyle)
Once I got sick, I couldn't get out of bed , I experienced bizarre headaches no one could explain, but worse, even in bed, I couldn't think, couldn't remember words, couldn't "feel" myself as a person... and as a writer, not remembering words IS A FUCKING PROBLEM
it's like your worst day of a cold when your brain is just FUCKED, only absent is the snivels and a cough... it's just borked! but this goes on for months or years
what did I do with a lot of my time: i spent thousands of hours watching porn in bed cause i didn't even have the concentration to follow the plots of most TV shows, and played mindless apps that required no skill
need to get groceries? Okay... that means three days in bed from exhaustion recovering from getting groceries
this wasn't every waking moment; there were moments I could do things, but it meant any GOOD moments or good days where I could actually do anything... the cost was NOW YOUR FORKED!
IT WAS HELLA BORING
My life now:
i rarely work more than twenty hours a week; working four hours in a day is a GOOD day for me
i rarely work more than twenty hours a week; working four hours in a day is a GOOD day for me
i rarely meet people; let alone mentor anyone -- those days are fucking gone; if i can, groceries are delivered to save the payment of what that exertion will be;
chronic pain is now an issue so even if I do have the energy to dance for five minutes here or there... the cost is pain and being bedridden the next day (as opposed to someone who danced 4-8 hours every weekend)
You hate the LOCKDOWN? This has been somewhat my life for the last four years, only i'm kinda better off now as not going out at all means a lot less fucking chronic pain for me
