‘What I want is a recovery narrative’: CBC Radio host Jill Deacon on life with long-term COVID-19

Gill Deacon is the host of CBC Radio’s Here & Now. She will take a leave of absence in December 2022. This article is about her continued absence.

“How is work?”

The cashier is my former neighbor and I haven’t seen him in years. We chatted while wearing masks while checking out. “I’m on medical leave right now,” I told her. “I’ve had COVID for a long time.”

Her eyes widened, panic taking over the upper half of her face. Reflexively, she reached up to tighten the mask around her nose.

As she stepped back slightly, it dawned on me that she had no idea how long COVID-19 lasted or that it wasn’t contagious. Who can blame her? Just as the virus hijacked our sense of normalcy in 2020, we’re still trying to learn and catch up.

Research continues.Promising breakthroughs appear regularly—most recently, evidence suggests Many long-term COVID-19 patients lack serotonin.

During this period, roughly 1.4 million Canadians suffering The mysterious punishments of the coronavirus have long made people wonder whether they will ever feel normal again. I am one of them.

Having COVID has been my biggest worry throughout the pandemic. As reports emerged of a strange, persistent strain of COVID-19 attacking once active, healthy people, rendering them limp with fatigue, I redoubled my determination to avoid this.

The looming long-term COVID-19 pandemic is why I diligently count to 20 when washing my hands, why I keep updating on my vaccination status, and why I wear a mask in every possible indoor space.

Lying in bed with a fever for days didn’t scare me, but I shuddered at the thought of long-term organ damage that would leave me in some debilitating, uncertain state. My biggest fear became my reality for months.

The struggle to get a diagnosis

Two summers ago, my originally healthy heart began to beat erratically—— Atrial ectopic beat, The cardiologist said at the time — that inappropriate behavior persisted around the clock.

I soon developed other symptoms that I initially mistook for the flu. But there was no fever or any other hallmark symptoms of COVID-19. By all accounts, I am COVID-free.

That’s why when I started feeling a particular symptom, no one thought to look for the key under the COVID-19 rock. Instead, I felt more and more like a hypochondriac every time I visited my GP.

Transmission electron micrograph of SARS-CoV-2 viral particles isolated from a patient.
Transmission electron micrograph showing SARS-CoV-2 virus particles isolated from a patient. Recently, several research teams have delved into the underlying characteristics of long-term COVID-19, formally known as post-COVID-19 illness, and gained insights into possible mechanisms of action. (National Institutes of Health)

My sinuses are sore but my nose is not blocked or runny.

sinusitis virusthey said.

I’m thirstier than usual.

diabetes testthey said.

I have no strength left.

Blood tests and ultrasound of the thyroid gland.

My stomach often rumbles and cramps after eating.

Ask a gastroenterologist for an endoscopy.

The top of my head is cold and tingling, and I wear it day and night.

restthey said, This is a virus.

Eventually, the discomfort became unbearable, and by December 2022, I had to quit my job as a CBC Radio host.

I became that overcooked noodle guy, coiled up on the nearest level surface, slouching, trying to remember why I loved talking to people, watching the heavy objects I once lifted collect dust. Ignore the phone calls.

Blood tests, urine tests, X-rays, endoscopy, EKGs, Lyme disease—all came back clear.

I have never knowingly contracted COVID-19—never had an acute case, and never felt the slightest sting of any symptom. I’ve done about a million PCR and rapid tests and not once have I had more than one streak. I never blow my nose, I never cough, I never lose my sense of taste. I made it through COVID unscathed, or so I thought.

After months of worry and confusion about my full set of infections, which were confusingly waning, a nucleocapsid test in March confirmed the presence of natural COV-2 antibodies.

long term life

My heart continued to beat irrationally. I feel thunderous when I sit and meditate in the morning, raucous when I recline to read, and perhaps most raucous when I sleep.

I was awakened by a sudden knocking sound, but there was nothing I could do. Deep breathing and mindfulness techniques don’t work here. This heart is like a puppy. When it hears the trainer’s order, it thinks with a little resentment from the corner of its eye, and then jumps up and tears down the furniture.

I had no choice but to lie awake for hours, waiting for it to shred all the pillows, and finally collapse exhausted into a pile of scattered feathers. Only then can I do the same thing.

It can be a challenge to stay present and not grieve what I have lost or lament what has happened to me. I take this cliché but true cliché day by day.– Gill Deacon, CBC Radio host

After a few months of not exercising, it seemed like a sickening feeling of nausea started to develop in what was left of my quadriceps, and then swept through my gut, along with pain radiating from the back of my head and sinuses. The cavity traveled down through my racing heart and rattled through my digestive tract.

There was a buzzing in my ears, like a shower cap with a cicada on it. The soles of my feet screamed at me with intense pain, as if I had set them on fire.

When I feel the wave coming, I need to close my eyes, bend over, and let everything around me stop. I retreat to bed, or pull my hat over my eyes, or ask my loved one not to speak loudly, or all of the above, and then throw an impatient tantrum to add insult to injury.

Long COVID is an electronic keyboard played by a young kid in a sugar high, hitting every button with his little fingers to see what it would do – reverb, distortion, drums, delay.

Physician and epidemiologist Dr. Kieran Quinn puts this in more medical terms In the Journal of the Canadian Medical Association earlier this year. He said there are 100 to 200 symptoms of COVID-19 (hence the diagnostic challenge), but nearly every possible combination of symptoms is debilitating in some way.

road to recovery

Looking back, it’s unlikely that I was a unicorn.

As someone with a history of multiple cancer diagnoses, who completed chemotherapy the same year as COVID-19, who raised his head with enthusiasm, and a family of school-aged teenagers and active twenty-somethings — I thought I would A more likely target. But apparently, whether you know you have COVID-19 or not, you can still be a long-hauler.

As of this writing, research shows 10% to 15% Patients infected with SARS-CoV-2 are at risk of long-term infection with the new coronavirus. So for every 10 people you know who have contracted the virus, intentionally or unintentionally, one in 10 may become a long-hauler.

The tone of podcasts and publications about long-term COVID-19 has always been grim: Joanne is a healthy veterinarian, mother of four, and former marathon runner who now spends her days on the couch…

I don’t need those stories anymore – I yes Joanne.

What I want is a narrative of recovery, evidence of the light at the end of this uncertain tunnel.

So let me go ahead with cautious optimism.

Since March, I have been working with a physiotherapist who specializes in long-term COVID recovery. They monitored my resting heart rate, heart rate variability, and blood oxygen.

They track my symptoms and set limits for my energy expenditure; I now live within a calorie budget, not for what I can eat, but for what I can burn through activity.

Slowly, methodically, and painfully, I was able to do more. I can walk, go to the grocery store, cook, talk to multiple people at once, and climb stairs without stopping.

It doesn’t have the vibrancy and vitality that I remember my life having, but that’s the life I have now and I’m grateful for every step forward. One expert told me that progress is measured in months, not days or weeks.

Jill Deacon's avatar
Gill Deacon, pictured when she returned to CBC Toronto after undergoing cancer treatment. Deakin is currently on leave from work due to a long-term illness with COVID-19. (John Litty/CBC)

It can be a challenge to stay present and not grieve what I have lost or lament what has happened to me. I take this cliché but true cliché day by day.

Sometimes, when I’m able to put a positive spin on it all, I remind myself that learning to face uncertainty is a surprisingly powerful skill.

Amid the constant monotony and discomfort, I’m trying to learn a lesson: to appreciate the good when it appears, to look harder for it when it doesn’t, and to stay open to whatever comes next.

In the meantime, to my fellow long-haulers: hang in there. We’ll get through this.

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