Katie Kitchen used to work out five days a week. 

Now she worries taking too long a walk could leave her fatigued for days.

What she calls "crashes" are among the realities the 35-year-old has lived with since developing long COVID more than two years ago.

"When I have a crash, my whole body just feels like it's being weighted down by sandbags," said Kitchen.

"Your whole body just feels so heavy. I get really bad aches though my whole legs, and honestly, the only thing you can do during a crash is sit or lie down in total silence." 

There's no way to predict when one of those crashes will come or how long it will last, she said.

"Like everything long COVID, it just shows up." 

Kitchen tested positive for COVD-19 in December 2020 and never fully recovered. 

"People look at me and say, 'Well, you look fine,' which I think is probably a compliment, but it is very much an invisible illness and an illness that's still not well understood by the medical community."

Fatigue, shortness of breath and cognitive issues like memory loss are among the list of more than 200 reported symptoms of long COVID, also known as post-COVID-19 condition. 

Researchers are working to find out more about the illness, including how many people are affected by it and how long they experience symptoms. 

A December report from the Office of the Chief Science Advisor of Canada said as of August 2022, more than 1.4 million people in Canada — about 15 per cent of adults who had contracted COVID-19 at that point — said they experienced symptoms three months or more after their initial infection.

'It impacts every area of your life'

When Marylynn McLeod gardens, she often sets a timer to remind her to rest after an hour, out of fear she too could experience a crash. 

Long COVID has left the 56-year-old struggling with symptoms that include fatigue and problems with her memory and speech. 

McLeod had been working as an insurance broker when she first got sick with COVID-19 in 2020. Long COVID has left her on long-term disability. 

Woman with red top and glasses stands and brown hair stands in her garden.
Long COVID has left Marylynn McLeod, 56, unable to return to work permanently. (Travis Golby/ CBC)

"It's been devastating," said McLeod.

"I just don't have the energy to be able to do a lot of things anymore that I used to do. So it's been very isolating."

Because the symptoms aren't always obvious, people "don't realize how impactful it is — that it impacts every area of your life," she said.

CBC Manitoba checked in with McLeod and Kitchen to hear more about their experience with long COVID after initially speaking with them earlier in their illness. 

Both say while they've seen some improvements in their health, their lives remain affected by long COVID. 

Unlike McLeod, Kitchen has been able to return to work full-time. She didn't have underlying health conditions when she got sick, but said along with the fatigue, her long COVID symptoms include migraines and breathing issues. She now takes a number of different medications to help treat certain symptoms, she said. 

Kitchen has undergone tests, seen specialists and taken part in the pulmonary rehabilitation program in Winnipeg. She's also gone to Alberta to see an internal medicine doctor who works with long COVID patients.

WATCH | Katie Kitchen describes her experience with long COVID:

Watch | Winnipeg woman describes experience with long COVID

Katie Kitchen first tested positive for COVID-19 in December 2020. More than two years later, she still lives with symptoms of long COVID.

While she has been able to access medical care here, Kitchen said she'd still like to see a comprehensive treatment centre dedicated to long COVID in Manitoba — one that brings together physicians and health professionals like physiotherapists and occupational therapists. 

"Someone like me who has cardiac, respiratory and other symptoms, you're seeing a cardiologist, you're seeing a respirologist, you're seeing an internal medicine specialist. You're not seeing all these people in one place at one time," which is "exhausting and frustrating," she said.

McLeod agrees. 

"It's exhausting to try to find specialists to treat each part, and you have to wait months and months and months between each specialist," said McLeod. 

Manitoba Shared Health said there are no plans for a dedicated long COVID clinic in the province, and recommends anyone with symptoms see their health-care provider about care options. Shared Health also has resources, tips and tools for people living with long COVID on its website

A spokesperson said the provincial health agency doesn't track the number of people with long COVID in Manitoba, but that fewer people are seeking care for the illness. 

One indicator of that is that in the past year, 44 referrals to the pulmonary rehabilitation program had a diagnosis of COVID-19, compared to 200 the year prior, the spokesperson said.

Manitoba long COVID research

Dr. Alan Katz, a family physician and professor at the University of Manitoba who is doing long COVID research, still wears a mask indoors.

"Because I recognize that we don't yet know what the risks are for long COVID at this time, as things are progressing, and we don't know if the severe symptoms of long COVID are gone." 

Katz is part of a research team trying to get a deeper understanding of just how many people are affected by long COVID and who is at greatest risk. 

"I'm really hoping that we'll get a good understanding of how serious this problem is," he said.

Man with short grey hair and a beard wearing glasses stands outside beside a brick wall.
Dr. Alan Katz, a family physician and professor at the University of Manitoba, is part of a team researching long COVID in the province. (Trevor Brine/CBC)

The team looked at data from the medical records of 66,000 people in Manitoba who tested positive for COVID-19 before December 2021, three months after they were infected.

Then they looked at how many of those people presented with symptoms that could be linked to long COVID over a year, said Katz. 

A first paper, which is currently being written, will shed light on how many people used the health-care system during that time period "in a way that suggests they have long COVID," he said.

The next phase of the research will hopefully identify risk factors and potentially outcomes, said Katz.

Though there are still a lot of questions and unknowns around long COVID, researchers are learning more all the time, he said. 

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