Each morning, Denise Morneau drinks her coffee hoping it will be the day she can taste it.
Morneau is what's become known as a COVID-19 long-hauler. Post-Acute COVID-19 syndrome (PACS), more commonly known as long COVID, is when a person still shows symptoms of the illness more than three months after their initial recovery.
On Valentine's Day last year, she fell ill and spent three weeks in bed. Sixteen months later, she still can't smell or taste anything. She also continues to experience other life-altering after-effects.
"I have been left now without any sense of taste or smell, and I have this huge pressure behind my eyes, which I feel like somebody is trying to push my eyes out of my head," said Morneau.
"And I'm an active person: I always have been. I might be 80, but I'm not one of those sit-in-the-chair kind of people. So it has been tough in that direction... It has impacted me greatly. There is no question about that. I just find it extremely, you know, extremely difficult."
There's grief because we've lost the person that we are. - Denise Morneau, COVID-19 long-hauler
Morneau is seeking help at the COVID-19 Recovery Program run through Hôtel-Dieu Grace Healthcare (HDGH) in Windsor, Ont.
The program has pulled in staff from various disciplines — from psychologists to physiotherapists — to help long-haulers cope with their post-COVID-19 reality.
Even as COVID-19 mandates fall and case numbers drop, a report by Public Health Ontario has found hospitals could be strained by an increase in emergency room visits, patient care and need for rehabilitation as more people deal with the lingering effects of the virus.
Persistent symptoms can also include brain fog, fatigue, headaches, dizziness and shortness of breath.
Morneau said the mental-health supports and group sessions at HDGH have been a lifesaver.
"They have classes. One can be on grief and depression because, you know, through something like this, there's grief because we've lost the person that we are."
Funding 'has been left to the hospitals'
The recovery program at the Windsor hospital is approaching its first anniversary.
HDGH's chief executive officer said it costs in the range of $450,000 a year to run the program and can't continue long term without provincial funding.
"At this point, the funding for any COVID recovery program in the province of Ontario has been left to the hospitals," said Bill Marra.
"So we've been funding it internally for the first little while. It wasn't as challenging because we had to shut down a number of our out-patient programs because of COVID. As we redeployed staff, we were able to pull the resources together... But going forward, it won't be sustainable."
WATCH | Bill Marra says the hospital is 'very, very concerned' about people with long COVID not getting support:
Program allows long-haulers to 'feed off' others
More than 150 people with long COVID-19 have been helped through the HDGH program. Most are survivors like Morneau who were never treated in hospital.
According to Marra, only 17 per cent of the patients in the recovery program were hospitalized when they fell sick with COVID-19 and just nine per cent were in the intensive-care unit. They include Nabil Alzubaidi and Wayne Martin.
The last few years were especially hard for Alzubaidi, who came to Windsor as a Palestinian refugee six years ago.
He worked as a cab driver and was eventually able to bring over his wife and nine children. One year before the pandemic, he lost his wife to cancer. In the fall of 2020, he was hospitalized with COVID-19.
WATCH | Nabil Alzubaidi talks about being hospitalized for six months:
"I got in a coma. I didn't remember nothing about the life here," said Alzubaidi.
Alzubaidi spent six months in hospital. He's been left short of breath and short on energy. He has no sense of taste or smell, and isn't able to work.
Martin was a longtime employee at Windsor's minivan plant when he was diagnosed with COVID-19 last year. Brain fog and breathing issues have made it impossible for him to return to work.
"When I was back to work for a while, I was doing four-hour shifts and they call it sedentary duties. And I was just sitting at a desk, and I would come home and sleep for two or three hours just to recover from the four hours of sitting at work."
Martin said the recovery program offers somewhere to go so he can unload among other long-haulers, rather than overburden his family.
WATCH | People with long covid talk about depression, grief, support they get from the program:
"You look forward for that week, that you're going to go to the support group, and you're going to see those people and and you can feed off them. You can let them know what your issues were. And in turn, you can listen to their their issues for the past two weeks," said Martin. "And when you live it and someone says, 'Oh, I can't breathe or I don't feel right today.' I sit there and go, 'I know what you feel like because I felt like that three weeks ago.'"
Treat long COVID like other chronic illness: CEO
Marra said the province needs to treat long COVID like any chronic condition and to start funding special recovery programs.
"We are very, very concerned about individuals who have had COVID, who are not getting the long-term support, because in the end, that could cost the health-care system far more money than it would to fund a program of this nature."
Ontario's Ministry of Health and Long-term Care said the hospital's request is being considered.
"The Ministry of Health is reviewing the funding request as it works to further understand the scope, scale and impacts of this disease, including consideration of approaches taken and lessons learned in other jurisdictions," a spokesperson said.
Morneau said she'd be heartbroken if the program were to end, but remains optimistic her long COVID will become a thing of the past.
"Every day I'm hoping it's going to be better and I still believe it will. And so that's what I'm going with, that one day I'm going to get up in that pressure is going to be gone and I'm going to be able to taste and smell."
Until then, she'll lean on her family, and while it's available to her, the COVID recovery program and the people in it.