When her family of three caught COVID-19 last December, Kim Ashbourne coped with a mild case while her partner and school-aged son suffered from classic symptoms.
She couldn’t have guessed at the time that she would be battling post-COVID symptoms almost a year later – symptoms so severe that she hasn’t returned to work, nor to most of her favorite pre-COVID activities.
Before testing positive for COVID-19, she led an active lifestyle that included hiking, working and going to college.
“And I had to give it all up,” Ashbourne told CTVNews.ca in a phone interview Wednesday.
According to data from Statistics Canada, around 14.8% of patients with COVID-19 suffer from symptoms at least three months after an infection – a condition known as long COVID.
These symptoms may fade within months or persist for years after an infection, and may even disappear, only to reappear later. They can occur both in unvaccinated people and in people vaccinated against COVID-19, like Ashbourne and his family.
While it’s hard for anyone to say what the 20, 10, or even five-year outlook is for people who suffer from long COVID, the US Centers for Disease Control and Prevention report that most patients’ symptoms improve slowly over time. Researchers and medical professionals have now had two years to list the most common symptoms. And the list goes on – over 100 symptoms, according to Health Canada.
The most common symptoms are fatigue, memory problems, trouble sleeping, shortness of breath, anxiety and depression, generalized pain and discomfort, trouble thinking or concentrating, and trouble thinking. post-traumatic stress, although some patients suffer from other neurological, vascular, pulmonary and cardiac disorders. complications.
Ashbourne checks many of these boxes. A few weeks after recovering from her initial infection, she began to suffer from intense fatigue, memory problems, lack of concentration and difficulty walking. Her legs were going numb and tingling, and one of her feet was dragging. At the end of her first day back at work after the initial COVID-19 infection, she could no longer lift her arms.
“I spoke to a few different doctors early on because we really didn’t know anything about long COVID at that point,” she said. “I was afraid of having a stroke or something.”
Eventually, she was diagnosed with long COVID, post-exertional malaise, and COVID-induced functional neurological disorder, a nervous system disorder that can affect patients’ ability to move, swallow, see, and hear. She lost the ability to work, to roam the hills and forests of Vancouver Island, and to be the parent she wanted to be. A short walk in his neighborhood could trigger two or three days of intense fatigue. She also struggled with depression and feelings of isolation.
“There’s definitely been heartbreak from not being able to maintain the life I had and there’s stress,” Ashbourne said. “It’s also very difficult because you become socially isolated (due to) the level of fatigue, my inability to be mobile, various reasons. I was spending a lot more time alone than before.”
Although he feels isolated, Ashbourne is not alone. For patients who suffer from the most severe cases, performing daily activities that most people take for granted – such as going to work, socializing, exercising and doing household chores – becomes very difficult, if not impossible.
Dr. Mark Bayley knows this all too well. Dr. Bayley is Medical Director of the Toronto Rehabilitation Institute and Senior Physician for the institute’s long-running COVID Rehabilitation Clinic. He is part of a multidisciplinary team helping patients recover from long COVID using a symptom-based approach.
“We know that everyone has a different presentation of their individual symptoms and their individual issues, but the net effect of these symptoms on many of them is that they can’t do their usual activities,” Bayley told CTVNews.ca in a phone interview Thursday.
He said part of the reason there are so many symptoms documented is that, in some patients with long COVID, the virus appears to be exacerbating pre-existing or underlying conditions that may not have did not cause any problems for patients before they were infected.
“That’s the challenge we face, do we know it can make things worse for sure,” he said.
“For example, we know that people who had pre-existing depression or anxiety were made worse by COVID, and there’s a physiological reason for that. We know that inflammation can interfere with your brain’s ability to release chemicals that are important for your mood, and for calm and anxiety.”
There is no single cure for long COVID. So Bayley and her colleagues — including occupational therapists, physical therapists, cardiologists, psychotherapists and other specialists — work with patients to help them minimize and overcome their unique symptoms.
It’s something Ashbourne is working on with her own team of specialists at the Island Health Post COVID-19 Recovery Clinic in Victoria, British Columbia. With the help of a physiotherapist, occupational therapist, nurses, social workers and a clinical physician, she begins to control her symptoms. She doesn’t know what her recovery ceiling is or when she’ll hit it, but she’s hopeful enough to keep working on it.
“It’s definitely a long-term prognosis for me and for a lot of people, there’s no doubt about it,” she said. “It could be resolved in three weeks, or in three months or three years. I see an improvement, that’s for sure.”
In Sudbury, Ont., nurse Stacy Thompson is fighting a similar battle, but with her own unique set of post-COVID symptoms. Like Ashbourne, Thompson, her partner and their two children were infected with COVID-19 last December. While her family suffered from mild symptoms, Thompson was hospitalized for four days with severe shortness of breath and irregular heartbeats.
Within weeks of testing positive for COVID-19, Thompson had become so weak she could not walk without leaning on walls and furniture. She began to experience chest pain after mild exertion. She lost her appetite, her strength and her ability to balance. She became short of breath easily and developed left side weakness and numbness. She suffered from brain fog, depression and suicidal thoughts.
“Around Christmas time, I had left-sided numbness and weakness,” she told CTVNews.ca in a phone interview Thursday. “But I was in such a brain fog that I didn’t realize I should have gone to the hospital to make sure I didn’t have a stroke.”
Thompson’s doctors performed a battery of tests over several months. They eventually diagnosed him with long COVID, along with COVID-induced depression, left-sided nerve damage, and postural orthostatic tachycardia syndrome (POTS), a condition that causes an abnormal increase in heart rate when patients move from a lying position to a sitting or standing position.
Like Ashbourne and so many other longtime COVID patients, Thompson has lost the ability to work, perform household chores and enjoy many of the activities she did before her COVID-19 infection.
“Everything was difficult,” she said. “I struggled a lot with the idea of not being able to go to work and not being able to play with my children and not being able to do what you normally do in a day.”
Fortunately, his weekly rehabilitation sessions with cardiologists, physiotherapists and psychotherapists are beginning to bear fruit. Thompson is able to control her depression and POTS with medication, and says her cognitive symptoms and fatigue are improving.
She even plans to return to work as a registered nurse at Horizon Santé-Nord.
“Hopefully I can come back in the new year with minimal restrictions,” she said. “The nerve damage in my leg and arm is probably permanent, but there is a chance it will get better.”
Thompson and Ashbourne are just two of approximately 1.4 million Canadians who have suffered post-COVID symptoms. But their experiences show how, despite all the diversity of these symptoms, so many long-term COVID patients face the same challenges in leading active, fulfilling lives.
“I’m happy to share my story if it helps anyone else,” Thompson said. “Because I felt very alone through it, but the more you read about it and hear the stories, it just makes you feel less alone.”
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