nurse

Holly Smith, LJI Journalist

PASPEBIAC – Long COVID is a growing health crisis that affects thousands of Canadians, altering their lives in ways they never imagined. For some, the symptoms persist for months or even years after the initial infection, making even the simplest tasks a challenge. 

According to Statistics Canada, as of June 2023, about two-thirds of Canadian adults reported having at least one confirmed or suspected COVID-19 infection. Among them, nearly 15% developed long COVID, meaning their symptoms lasted for three months or longer. This translates to approximately 1.4 million people, or 4.6% of the adult population, struggling with ongoing health complications. 

Long COVID symptoms vary from person to person, but the most common ones include fatigue (72.1%), cough (39.3%), shortness of breath (38.5%), and brain fog (32.9%). Nearly half of those affected reported experiencing symptoms for a year or more, and 21.3% said their condition significantly limited their daily activities. 

Roxanne Major, a licensed practical nurse from Paspebiac, knows all too well how devastating long COVID can be. Before contracting the virus, she lived a full and independent life. She worked full-time in healthcare, ran a small foot care business, sold Tupperware, and volunteered at her children’s school. But all that changed on April 1, 2023, when she woke up with severe COVID symptoms. 

“I had generalized pain, fever, chills, vomiting, severe spinning vertigo, and was unable to go to the bathroom alone. I did a home COVID test which was positive, then had a positive PCR test at the CLSC. Five days at home in bed. On day six or seven, I tried to work for a week wearing an N95 mask, but was unable to finish the shift twice my husband came to get me,” says the mother of two. 

Despite being fully vaccinated and taking all necessary precautions at work, Roxanne tested positive for COVID-19. At first, she thought she would recover within a few days. But as the weeks passed, her condition worsened. 

“I lost 90% of my hearing in one ear and my symptoms have worsened following COVID. I went to the CLSC and was put on sick leave for a suspected sinus infection following COVID. Shortly after, I had an appointment with my family doctor, who put me on indefinite sick leave.” 

Over the past two years, Roxanne’s list of medical diagnoses has grown. “Starting with bilateral Ménière’s disease, autoimmune inner ear disease (loss of hearing in both ears – with two hearing aids), postural orthostatic tachycardia syndrome (standing for more than 15 minutes increases my pulse rate, decreases my blood pressure, inner tremors), sinus tachycardia, and long COVID, all triggered by COVID,” explains Ms. Major. 

The Daily Struggles of Living with Long COVID 

Roxanne, who was once a very active member of her community now finds simple activities require careful planning and energy conservation. “On good days, I help my husband make meals and wash dishes using a bench to sit on. I need a family member at home when I shower, which I do sitting down twice a week, in case I fall like I have in the past. On the days I shower, I can’t do anything else because it requires a lot of energy and many breaks between each step. Just cleaning the toilet tires me out for days.” As a mother, Roxanne wants to enjoy her family as much as possible, “Since the beginning, and still today, I need a short nap twice a day to enjoy the little moments with my family.” 

Memory and concentration problems are also a significant challenge. Ms. Major’s memory and concentration have also declined. “I was even forgetting to take some of my pills. I now have them prepared by the pharmacy in a dispill. One of the 25 pills I take daily, is an immunosuppressant to try and stabilize my hearing loss.” However, this means she is now more susceptible to infections and viruses. She told SPEC that one time her children had a cold, which she caught and a week later she had to go to the emergency room. She was diagnosed with a severe sinus infection and prescribed antibiotics. But it didn’t end there, “The week after, I got a severe case of gastroenteritis which took another week to get over,” explains Ms. Major 

The Emotional Toll of Long COVID 

Living with long COVID is not just a physical struggle, it’s an emotional one as well. Many people don’t understand the severity of the condition, leading to judgment and isolation. “People are fast to judge when they don’t see someone out and about in the public, not knowing things a person is actually going through.” 

She recalls a painful moment when a family member told her, “You should quit the CHSLD (long-term care facility), you’re always sick when you’re there, try to work less.” Another person accused her of keeping her husband from socializing with the neighbours. “They even said I don’t take care of my children, that I spent the summer rocking outside.” There is still much stigma relating to Long COVID, considering it is a relatively new disease, this manifests the individual being misunderstood, not taken seriously. A report by Simon Fraser University states, “Long COVID awareness and education is needed among doctors, nurses, care providers and the public in Canada to reduce stigma around the condition and legitimize the disability.” 

The Fight for Better Healthcare and Awareness 

One of Roxanne’s biggest frustrations is the lack of understanding about long COVID in her region. “Here in the Gaspésie, doctors haven’t yet understood the long-term effects of COVID. Despite living in a remote region, I’m lucky to have found and have been cared for by all these specialists in the city since two months post-COVID.” 

Her medical team, based in Quebec City, includes ENT specialists, rheumatologists, internists, ophthalmologists, and infectious disease experts. She also receives care from the Long COVID Clinic in Rimouski. “They’re incredible. At first I had access to online webinars to help me understand my symptoms. Since there’s no known cure yet, I’m still learning to manage my symptoms. The team also helped me understand that, it’s not just the flu and it’s not in my head.” 

Vestibular physiotherapy has also played a key role in her recovery. “I also have vestibular physiotherapy sessions every week. This helps me enormously improve my balance and reduces the intensity of my vertigo spells and migraines. As you can see, it takes a whole team of professionals to help me manage all the damage caused by COVID.” 

Looking to the Future 

Although her condition has changed her life dramatically, Roxanne remains hopeful. “The way I see my future today is being focused on learning to improve my quality of life by reducing the intensity of my symptoms and enjoying the simple pleasures with my family: crocheting, swimming in my pool, camping, hunting, gardening, relaxing by swinging on my deck, and getting as much fresh air as possible.” 

She knows she may never return to her nursing career, but she still hopes that medical advancements will one day lead to better treatments. “I’ve already accepted that it will be impossible for me to return to my vocation, but I still have hope that one day someone will find a miracle pill for us (long COVID patients).” 

Her message to others struggling with long COVID is clear: “Anyone can get long COVID: vaccinated or not, in perfect health or not, regardless of age or where you work. It is definitely NOT just a cold. Stay safe.”