For COVID-19 'long-haulers,' the new normal will be wildly different

Now more than a year into the pandemic, CBC Ottawa is looking at how people are adaptingto new realitieswith its series The Slow Return.

It started with difficulty breathing.

Within six weeks, Chantal Renaud was bedridden, lost 35 pounds, and began what she describes as being "stuck in a nightmare" indefinitely.

"I sincerely thought I was going to die suffocating in my bed," saidthe Gatineau, Que., resident who got sick with COVID-19 early in the pandemic.

A year and a half later, Renaud still hasdifficulty breathing, is extremely fatigued and continues to wait to see a specialist for postural tachycardia syndrome an abnormal increase in heart rate whensitting up or standing.

"I'm not sure ... I willcompletely recover," said Renaud. "I'm asking myself: is this my new normal?"

Renaudsuffers from long COVID and calls herself a "long-hauler"someone who experiences long-term effects of the respiratory illness scientistsand medical professionals are still trying to understand. For many who have survived COVID-19, their recovery is far from over, lifestyles transformed,and futures full of uncertainty.

• COVID-19 'long-hauler' suing insurer after disability claim rejected

Long-term recovery can happen

Judy King, a physiotherapist who specializes in recovery for those with long-term respiratory and cardiac conditions, advises people with long-term COVID symptoms to write everything down from fatigue, losing senses, to brain fog to understand their symptoms.

"We know of people who were running a marathon prior to COVID, and now can barely, literally get dressed in the morning," King said. "That's kind of where people are at."

She says it's important to pace yourself, prioritize the activities you need to do, plan your day, and also prioritize pleasure. People with chronic symptoms need to plan their days so they're not exhausted by the end of the day and that can mean limiting activities and prioritizing some over others.

"You kind of almost have a sack or envelope of energy and that's what you have today, and it may not be the energy you had before COVID," she said. "So how are you going to use that energy? And again not to be hard on yourself."

She recommends people try to keep their heart rate within 15 beats per minute of their weekly average, or else it could aggravate symptoms and exhaustion.

King says those suffering from long COVIDneed unique, targeted treatment and support,and hopes there will be resources developed soon specific tothat group.

"Going forward, people will be needing to have resources that are inter-professional. We need to work together," she said. "The whole rehab team occupational therapist, physiotherapists, speech pathologists, audiologists, dietitians, nurses ... Everyone needs to work through and work together going forward."

Long-haulers forgotten: social worker

Sophie Hwang, a social worker and manager of support services for Institute for Advancements in Mental Health, is concerned about those who survived the illness.

For long-haulers, there's no going back.- Sophie Hwang, social worker

"The other piece I also came across is, 'Oh the pandemic is finishing, now we're going to reopen, life is going to get back to normal' however for long-haulers, there's no going back," said Hwang.

"Sothis kind of joyfulness, and people are sort of trying toforget what happened, makes thelong-haulers feel extremely hurt, disappointedand even very, very angry."

The mental health toll on long-haulers is complex as they deal with major disruptions in life due to health complications, stigma, and even survivor's guilt, she said.

Hwang says public health officials and medical professionals are more focused on immediate responses like vaccinations and hospitalizations, so few services or resources are currently out there for long-haulers. She believes there needs to be more medical and counselling supports targeted to this group.

Meanwhile, Hwangsays the same strategies for those struggling with chronic illness apply here:setting realistic expectations, listening to your body, continuously speaking with a health practitioner, and seeking flexibility where needed.

"Do something that's very small but brings you some pleasure in life," she said. "Reach out to friends and family ... You don't have to suffer alone."

Meanwhile, King isparticularly concerned for those who had COVID-19, are experiencing long COVID, and may not have been diagnosed.

"I'm worried they will fall through the cracks," she said.