Kristy Nickel got sick with COVID-19 in November 2020.
Days passed, then weeks — and it was clear she wasn't getting better.
"I just didn't recover," the 42-year-old registered nurse from St. Andrews, Man., said. "I just couldn't get myself back to normal."
Like so many others, she is now living with long COVID.
For more than a year, Nickel, who was active before she got COVID-19, has struggled with lingering effects of the illness, such as shortness of breath, extreme fatigue and constant headaches.
She saw a family physician, got referrals to specialists and took part in a rehabilitation program at the Wellness Institute at Seven Oaks General Hospital, which included seeing an occupational therapist and physiotherapist.
But when her second attempt at returning to work failed, she decided she needed more.
Nickel found a long COVID clinic run by an internal medicine physician in Alberta willing to take her as a patient.
"What I find here so far in Manitoba is we have focus on management of our symptoms, which is needed and it definitely helped me," said Nickel. "But there was nothing that I found that was looking into … why my body was like this."
She isn't the only Manitoban with long COVID looking for answers and treatment.
Doctors Manitoba president Dr. Candace Bradshaw said family physicians like her are seeing more patients presenting with long COVID symptoms, and finding help is a challenge.
"As a family physician we always want to either have one of two things happen: we either have the answer for a patient, or we can say, 'I don't have the answer but I know where to send you to get answers' — and right now, neither exist," said Bradshaw.
Shared Health just recently launched online resources about long COVID care for Manitoba patients and physicians.
A spokesperson for the provincial health organization said patients with long COVID can see a health-care provider, such as a family physician, and be referred to specialists or existing clinics if needed.
One example is the pulmonary rehabilitation program, which has multiple sites, including one at Winnipeg's Misericordia Health Centre. That program does see long COVID patients, though they must fit its criteria.
Bradshaw said more is needed to meet the needs of patients.
She'd like to see a centralized clinic specializing in long COVID care in Manitoba — one that brings together physicians with expertise in treating the illness and allied health professionals, such as physiotherapists.
Shared Health said there are no plans to establish a dedicated long COVID clinic in Manitoba, but Bradshaw said similar ideas exist in the province for other illnesses.
The model can be easier for a patient, she said.
"You don't have to go to 10 different locations to get different types of care," said Bradshaw.
"You have one chart in one place where everybody who's involved in your care can see the updates on what's going on," she said, explaining that information can then get sent back to the family physician.
No map for treating long COVID: doctor
Dr. Neeja Bakshi is the internal medicine physician who runs the long COVID clinic just outside Edmonton that Nickel visited in May.
Bakshi launched the clinic through her private practice after seeing an increase in the number of patients being referred to her with post-COVID symptoms.
Since January, she estimates she's seen more than 80 patients with long COVID. She's getting up to 20 referrals a week, including some from Manitoba, Ontario and British Columbia, she said.
Like Bradshaw, she said there are benefits to a collaborative model that links together physicians and allied health professionals when treating a complex illness like long COVID.
"It allows for the patient to feel like they are part of a system rather than having a piecemeal approach," she said.
Right now there isn't a map for treating long COVID, but a dedicated program allows for experiential learning from seeing a large number of patients, said Bakshi. That knowledge can help educate other practitioners, she said.
Bakshi believes in the months and years to come there will be a significant amount of disability and debilitation from long COVID — something suggested by the number of forms she's already filling out about a patient's ability to return to work, or need for modified duties.
She believes going forward, a provincial or federal system for treating patients with long COVID could help people get back to work sooner.
Clinics 'needed in every province': patient
At Bakshi's clinic, treatment starts with screening tests. There's also a 90-minute appointment to discuss the patient's COVID experience, including their current quality of life, which helps determine how effective treatment is, she said.
Treatment can also include medication and referring patients to other health-care providers, like occupational therapists, she said.
Nickel is grateful she was able to access the long COVID clinic, where Bakshi changed one medication she was taking and prescribed a specific antihistamine.
The Manitoban said she's taking it one day at a time, but is seeing improvement in her symptoms.
"I have hope again," she said.
She was able to pay for the trip to Alberta, but knows that's not a reality for everyone. She'd like to see a specialized physician-centred clinic in Manitoba.
"I think that it's very needed in every province," she said.
She hopes to get back to what life was like before COVID, including being active and getting back to work, and wants others suffering with long COVID to know they aren't alone.
"It's not in your head," she said. "There are places that can help."