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‘We’re not prepared’: What it takes to recover from long COVID

Click to play video: 'Edmonton doctor Daisy Fung on 1.5 years of 
living with ‘long COVID’ symptoms' Edmonton doctor Daisy Fung on 1.5 years of living with ‘long COVID’ symptoms
WATCH: Edmonton's Dr. Daisy Fung is living with 'long COVID' after catching the virus at the beginning of the pandemic, and she says it's getting worse over time — not better. While she survived the infection, she now deals with brain fog, extreme fatigue and muscle pains that interfere with her roles as a family physician and mother. She joined Breanna Karstens-Smith to talk about her experience and fears for others – Oct 12, 2021

Cindy McLean was living a normal life, working in a small-town Saskatchewan pharmacy, taking care of her family, and even going to the pool and occasional Zumba class to keep active.

Then, in January, she caught COVID-19 and her life hasn’t been the same since.

“Everything came to a halt,” she said. “I had people cooking meals. I had people looking after my husband and looking after my son.”

McLean said she couldn’t drive, she couldn’t shower, and she couldn’t even climb the stairs to get out of the basement where she was self-isolating.

Read more: Tens of thousands experiencing ‘long COVID-19’ symptoms in Ontario, science group says

McLean, a pharmacist from Watrous, Sask., said she didn’t have the typical symptoms of COVID-19, such as shortness of breath or a cough — at least not at first. Mostly, she said, she was tired.

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“I probably slept close to 18 hours per day in the first six weeks,” she said.

She also had “brain fog” and cognitive issues that made it hard for her to read or watch TV for long periods of time.

She slept so much, she said, that she sometimes became dehydrated and was briefly hospitalized twice because of it.

Click to play video: 'New Brunswick woman diagnosed with long COVID tells her story of pain and heartbreak' New Brunswick woman diagnosed with long COVID tells her story of pain and heartbreak
New Brunswick woman diagnosed with long COVID tells her story of pain and heartbreak – Oct 12, 2021

Recovery was slow, she said, and she still suffers from extreme fatigue today.

“I remember it being a victory when I could get up the stairs and sit and have a cup of coffee at the top of the stairs with my family and then go back down,” McLean said, noting she still struggles with stairs and gets tired quickly, 10 months after her diagnosis.

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Her experience isn’t unique. Around 37 per cent of COVID-19 sufferers will report continued symptoms like fatigue or breathing problems, three to six months later, according to a recent study from Oxford University.

Read more: 37% of COVID-19 patients show at least one long-term symptom, study finds

That would suggest that around 600,000 Canadians likely had lingering symptoms, given how many people have caught the disease over the course of the pandemic, and how many survived it. Depending on when they first caught COVID-19, many of these people would likely since have fully recovered, but for thousands, the recovery process would have been slow – or still ongoing.

Experts are only just starting to learn about how to help people suffering from long COVID – symptoms that last at least a month after a person is diagnosed with COVID-19, said Scotty Butcher, an associate professor in the School of Rehabilitation Science at the University of Saskatchewan.

Energy and pacing

One lesson experts have learned so far: progressive exercise – like gradually increasing the distance you walk or run, or the amount of weight you lift – does not work for many long COVID-19 sufferers, Butcher said.

“Exercise is medicine and that is true across almost every condition that we’re aware of,” he said – except for people dealing with chronic fatigue as a result of long COVID.

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One of the most common problems reported by long COVID patients is extreme fatigue, often called “post-viral fatigue,” Butcher said.

“Each individual has a certain amount of energy that they can expend each day and we don’t know what that is, but it’s certainly a lot less than what it used to be,” he said.

Doing ordinary activities around the house can quickly deplete their energy, he said.

Read more: Study sheds light on coronavirus ‘long-haulers,’ but experts still lack clear picture

The tricky part is, if someone is having a good day, they might decide to take on an extra activity – a short walk or washing the dishes – Butcher said, and this can have major consequences.

“What happens is it’s between 12 and 72 hours later, or sometimes even a bit longer, they experience what’s called a crash,” he said, where their energy levels are so low they can hardly manage activities they could do a day before.

“Some people are bedridden, some people are stuck in chairs, stuck in the home, can’t really get to the point where they can get out of the house.”

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People have to be taught to manage their energy by pacing themselves, he said, and spreading out their activities and taking frequent breaks throughout the day. Carefully tracking their symptoms can help, too, he said.

Learning how to pace herself was difficult, McLean said.

“I’ve learnt a lot about energy pacing and reserving my energy and having realistic expectations because, as a fully functioning 41-year-old, I was doing everything and now I have to be a little more, ‘OK, you know what? You went for a walk today. That is awesome because you couldn’t do that six months ago.’”

With the help of an online rehab webinar and support groups, McLean said she has made significant progress. She’s able to go for walks and currently works two four-hour shifts per week at the pharmacy.

She recommends that people like her who are recovering from COVID-19 try to connect with physiotherapists, physical therapists and other medical professionals for advice on how to recover.

Talking to other people who have experienced long COVID is also key, she said.

“Meeting those people and hearing those stories, it’s made a difference as well.”

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Butcher also recommends talking to a medical professional, especially one who understands the importance of pacing. But, he said, he’s concerned about the lack of resources to help this massive, still growing community.

“We’re not prepared for it,” he said. “This is a very big concern for our health-care system.”

“It’s going to be huge,” McLean said. “There’s going to be thousands of us that are trying to get our life back.”

While there isn’t yet a comprehensive directory of Canadian patient resources for COVID-19 recovery, some suggested links for more information on the issue are below:

Patient resources from the CANCOV study research group

Post COVID-19 Care & Recovery, from the B.C. Provincial Health Services Authority

COVID-19 Rehab Resources, from the Rehabilitative Care Alliance

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