Just over two years ago, Nikkie Gallant never would have imagined that simply sitting up in bed would be an exhausting task for her.
That’s been the P.E.I. musician’s reality since the fall of 2022, when she was diagnosed with post-COVID condition, more commonly known as “long COVID.”
Now she drains a lot of energy just going to the sink for a glass of water or folding laundry. She often has to forget about plans to leave the house.
“It’s like you’re a battery that doesn’t charge all the way,” the Summerside resident said.
“I’m doing a lot better than I was… but I’m still really sick. When I was at my worst, I was flat and I could barely sit up. I basically had a tiny window of the day where I could sit up.”
‘At my worst… I could barely sit up’: The pandemic is far from over for those with long COVID
While thoughts of the COVID-19 pandemic are in the rearview mirror for most Islanders, they’re still a part of daily life for others.
It’s estimated that more than 1 million Canadians suffer from long COVID, medically recognized as the persistence of COVID-19 symptoms for more than 12 weeks after a person is initially infected with the virus.
There is no known cure. Self-care and a few medicines can help manage some of the symptoms, though.
Fatigue, shortness of breath and brain fog are common, but the condition isn’t always the same for everyone.
Gallant said she may be one of the luckier ones, in fact. She has her mom around to help, insurance benefits through her work to cover some of her medical costs, and a custom wheelchair that allows her some independence.
She thinks her health is on a good trajectory and gradually improving, but said she knows patients whose symptoms have stayed the same or gotten worse.
“There’s not much you can do to get better, but you don’t want to lose your current baseline. You don’t want to lose the quality of life that you have,” Gallant said.
“I think we like to believe that medicine has all the answers… but for many conditions, it’s not like that at all. We don’t have answers for them.”
A spokesperson for P.E.I.’s Department of Health and Wellness said in an emailed statement to CBC News that neither the World Health Organization nor the Public Health Agency of Canada classifies long COVID as a disease, “but rather as a condition that can vary in severity and symptoms from person to person.”
The department said it does not track the exact number of patients with long COVID.
“For individuals experiencing [post-COVID- condition], care and management are provided by health-care professionals based on their specific symptoms and needs,” the statement reads.
“At this time, there are no specific plans for a dedicated long COVID rehabilitation centre in P.E.I.”
Gallant still struggles to do some of the things she loves the most.
She’s been nominated for multiple Music P.E.I. awards, but she hasn’t been able to put on any concerts in a while.
Even holding her guitar is a struggle. She now has a laptop stand propping up one end and pillows at the guitar’s neck to help her play, since she doesn’t have the strength to hold the instrument for long periods of time.
But she’s still come a long way from the early days of her illness.
“I couldn’t touch my guitar and it made me crazy,” she said. “Now I can play guitar a little bit — not super often, but on the weekends once in a while, I can play a few songs at a time.
“I get tired really easily, so I can do things in bite-sized chunks.”
Gallant decided to speak out because she’d like to see more funding put into researching the condition, and more rehab options for those who suffer from long COVID.
“We don’t have to live in fear of it, but we do have to be aware that it exists,” she said.
“There’s a certain amount of acceptance that we have to have that yes, we are living with this now and what does that mean? It doesn’t mean ignoring it.”
