I feel the need to share some of my experiences with myalgic encephalitis (chronic fatigue syndrome) publicly because before getting it I really had no idea what it meant. I figured it was like extreme burnout. Stress certainly doesn’t help but there is much more to it than being very tired.
Before becoming sick with what has finally been diagnosed as covid in October 2020, I was tired from being a new mother with a high-stress front-line job during a pandemic. My mental health had declined sharply around June and kept getting worse as I had increasingly frequent and unpredictable panic attacks where I almost lost consciousness many times. But before all of that I was very active. Sure I had dealt with injuries and illnesses postpartum but even with spondylitis, thyroiditis & a prolapse I was walking several hours a day, doing yoga, and generally keeping up with a super active baby very well.
If we go even further back, before I got pregnant and before a very triggering workplace violence incident, I had been running regularly at the gym, doing a combination of strength and cardio training with restorative conditioning, and had generally been a gym rat since university. We had fitness tests in first year. Our performance training was very physical. My body was my instrument and I took good care of it between spondylitis flare ups, practicing yoga every morning at 5:30am & hitting the gym for weights and cardio several times a week, plus teaching physical performance techniques in class and being super involved in leadership and extracurricular activities.
All of this changed drastically in October 2020 when I got covid for what we suspect was the second time. I had been hit with bad respiratory infections before. I’d even had walking pneumonia a few years prior, through which I still managed to run a full day of active back to back orientation games for elementary kids, do public speaking on stage for a massive audience of prospective students and their families, and cover for a colleague who was in hospital. I am no stranger to digging deep. “The show must go on.”
But this was very different. I got very sick very quickly and I could not get better. I was bedbound for a month, and would get winded simply from talking to my student teacher and LTO on video chat. I had intended to run parent teacher interviews from home but had to cancel because I couldn’t sit up and talk for more than half an hour at a time. I couldn’t get out of bed. My partner became a single parent. I only saw my 1 year old child when he would climb into bed with me to cuddle or play. I worked on my laptop in short bursts to finish marking, writing report cards, and planning for the rest of the semester all while burning through my short-term disability.
I cried on the phone to early intervention agents from the insurance company as I started to physically recover but mentally decline. I became clinically depressed, even during my short one-month rebound where I was able to get out of bed and clean the apartment. Eventually I mysteriously lost my ability to use the computer. Trying to look at anything on my laptop screen was like trying to decipher ancient hieroglyphics without a code breaker. I began to lose words very rapidly. I‘d have momentary lapses where I didn’t recognize common household objects, like clothing items and garbage bins. I became nearly narcoleptic and catatonic, spending another month unable to move from the couch and being able to do nothing more than pass out and stare at the ceiling.
Then the spondylitis flare began, and with it came the worst pain of my life, including labour, that made it impossible to move or to rest. Eventually I was put on antidepressants. Eventually I had my spondylitis officially diagnosed after ten years of occasional flares. After endless consults and MRIs and fighting w insurance (who still refused to covered it because they deemed it too expensive) I started on my biologic treatment. During this time I started to be able to do more, to think more clearly. By September I thought I should be ready to go back to work. We were hit with another bug in October and I moved my son and I into the new house early to isolate us from my partner. I was finally able to care for him on my own, though it was exhausting. I told insurance I’d like to try to come back to work. They said they’d touch base in the new year.
In the new year we got sick again, this time with what we would discover 5 months later to be EBV (mono). My partner and child bounced back in two days. I remained sick for two weeks. And then for three weeks. And then insurance followed up about returning to work. And then the questioning started: how are these symptoms coming back? Why didn’t they go away? Should we withdraw your treatment? Maybe it’s psychological, we see you have a history of mental illness? Maybe you’re just afraid to go back to work? Maybe going back is exactly what you need to get better?
So I did what I do every time I’m faced with a challenge: I threw all my energy at trying to overcome. I went for second opinions and new referrals. I refused for them to send me to the wasteland that is “pain management” (ie here are some opiates & meditation techniques—best of luck!). I refused to take “I don’t know” for an answer. And the answer is simple: you are still debilitatingly tired and sore because you have a very real medical condition that makes you very tired and sore. I have good days and bad days. My good days often bring on the bad ones. I used to be able to walk this city morning to night for 6 hours straight; now a good day is spending 3 hours on a 1 hour walk and then flaring for two more days because I just learned that overexertion actually aggravates the biological mechanisms behind myalgic encephalitis.
There is still so much stigma to face and likely more battles with insurance and my employer in my future. I’m still recovering from my latest round of COVID while still sick with symptoms of mono (though not contagious). There is still a risk that because I’ve had Long COVID once before that I might get it again even after being treated with Paxlovid, because the mono and the prior COVID infections and the spondylitis treatment have significantly weakened my immune system. There is still so much to recover from. I went to an outdoor family event yesterday and had to leave after three hours because I was having so much trouble breathing. By the end I was a dizzy, disoriented mess, with a big smile and pre-loaded w small talk bc that’s just who I am. And today it’s cost me time with my son who is now sick again, for the third time in a row, this time with heat rash.
I’m not sure sometimes how I can keep going on like this. But I know with love & nonjudgmental support from family and friends, I will get through this to the other side, even if that other side looks drastically different from my place of origin. I hope this story will help shed light on how precious the gift of good health is and how real post-viral syndromes like long covid and chronic fatigue are, especially in a time when we have less compassion for the vulnerable and the cautious than we did even before the pandemic. Thanks to those who stuck with me this far.