It’s been nearly a year since Jackie Loree felt like herself.
“It’s been a very difficult year,” says the Guelph woman and self-described 'long-hauler,' who continues to feel the effects of COVID-19.
“My quality of life has changed. I still enjoy my life and things like that, but it’s just different than it used to be. I keep thinking, ‘Is this my new normal?’”
COVID long-haul refers to lingering effects of the virus some must deal with, even after they no longer have the virus.
Loree, a nurse, believes she contracted the virus late last March and started to experience symptoms within a few days. It began with hip pain, followed by fever, gastrointestinal issues, chest and back pain as well as fatigue.
Though her symptoms are nowhere near as intense as they were at first, and she says they’ve continued to ease slowly in the past several months, Loree continues to experience recurrent chest pains and fatigue, along with shaking.
“I’ve had numerous tests, diagnostics. Everything comes up negative. They don’t know why,” she said, noting one doctor suggested it could be post-viral syndrome.
“I have periods where I think I’m improving, then … something will trigger and I’ll suddenly have a number of days where I feel worse again,” Loree said. “It’s like a rollercoaster – it’s up and down all the time. I’ve not had one day since I’ve had COVID that I felt like me.”
Most people who contract COVID-19 begin to feel better in about 10 days, said Dr. Matthew Tenenbaum, associate medical officer of health with Wellington-Dufferin-Guelph Public Health, acknowledging that’s not always the case.
“We know from some of the science of following people up, some people have persistent symptoms that can last for weeks or months,” he said. “This is something where the scientific literature is constantly evolving.”
Though it “seems to be” a pretty small percentage of people who experience long-term symptoms – also known as long-COVID – the quantity of such cases is “not small,” Tenenbaum said.
“We’re still doing a lot of learning about what long-COVID looks like and what the best (treatment) approaches are. Right now a lot of the focus is on monitoring how common it is, how long these things last and what kinds of things might predict someone’s risk of long-COVID,” he said.
It’s believed the sort and severity of symptoms someone has when initially infected, as well as perhaps gender and age, could be factors in determining their likelihood of experiencing long-term symptoms, Tenenbaum noted.
“This isn’t necessarily a random effect,” he said. “There are probably some systematic factors that influence someone’s risk.”
Teams of scientists around the world are working on that, he added.
Loree is a member of the COVID Long Haulers Support Group Canada, an online forum that allows people to share information and advocates for government assistance for people with long-term symptoms.
“I felt alone, not knowing anyone else who had COVID,” said group founder Suzie Goulding of Oakville.
“I’m just a shell of the person I was,” she said, noting she’s gone from being active to spending a lot of time on her couch. “This has changed my life 10-fold.”
The group currently has about 12,000 members, Goulding said, noting several branch organizations have formed for specific regions of the country.
“It grows every day,” she added of membership.
Loree has been back at work for about eight months now, but is not yet full-time.
“I’m still too symptomatic. I can function, but it’s a different kind of functioning than it used to be,” she said. “By the end of the day, I’m very, very tired. I’m often in bed by eight o’clock at night and I never used to be that way.”
