I was a bad sleeper as a kid, but made up for it over the last 15 years. I’m quick to snooze in the aisle seat of a plane and I’m out like a light as soon as my head hits a pillow. I’m also good at staying asleep — I rarely wake up in the middle of the night and if I do it’s usually for no more than five minutes.
That all changed last November. I started feeling unwell at the end of a Friday. Chalking it up to a long week, I went to bed and — you guessed it — fell asleep right away. When I woke up Saturday feeling worse, I got tested for COVID-19. On Sunday, it was confirmed: I had the virus.
It took a week of chills, aching muscles, a nasty cough and a sore throat before I started to feel like myself again — well, mostly myself, except for one very noticeable difference: I was struggling to fall asleep. And when I finally did, I’d wake up every half hour. At first, I rationalized that the sleeplessness was a result of being anxious about returning to work. Or perhaps I was still getting over the virus. But days dragged into weeks, and today, months after the original symptoms of COVID-19 appeared, I still can’t get a good night’s rest.
It’s no surprise that people haven’t been sleeping well during the pandemic — whether they have had the virus or not — a phenomenon that has become known as COVID-Somnia. A Greek study found nearly 40 per cent of people are experiencing difficulty sleeping; and in a survey of more than 5500 Canadians, half showed signs of serious problems with getting good zzzs.
This of course begs the question: has the virus directly impacted my ability to sleep, or did getting sick make me anxious, causing me to join the countless others who haven’t had COVID-19, yet still can’t seem to get any shut eye? The answer is unclear, but what I can say with certainty is that, before I tested positive, I was sleeping fine. Plus, I know what it’s like to be kept awake by nerves, and this is different. It’s like I’m stuck in a haze, desperate to fall asleep but unable to.
The cost of sleeplessness
Research has shown lack of sleep can affect both physical and mental well being. A 2018 study found that not getting enough sleep can impair cognition, specifically our ability to make decisions. So my concern over not getting a good sleep for the last few months certainly seems legitimate. But insomnia isn’t the only thing COVID-19 survivors struggle with.
Termed COVID long-haulers, some of the symptoms that can plague people post-virus include fatigue, headaches, shortness of breath, brain fog and muscle aches. Some talk about not being able to return to work, and struggling to do simple tasks. And while it’s still unclear how many of the 89 million people worldwide who have recovered from COVID-19 are experiencing long-hauler symptoms, research out of the U.K. estimates that 10 per cent of people have symptoms more than three weeks following infection. A German study concluded that of 100 patients who recovered from COVID-19 (both at home and in hospital), 60 per cent had heart inflammation up to three months later. Another study found more than 70 per cent of nearly 2,000 COVID-19 patients hospitalized in Wuhan still had symptoms six months after getting sick.
Still, as we near the one-year anniversary of the pandemic, it’s not surprising that there is not a lot of research looking at symptoms beyond a few months, or studies that are able to tease apart more severe COVID cases and the complicated factors that could be behind some of these lingering symptoms.
Neuroscientist Dr. Adrian Owen is co-leading the COVID-19 Brain Study, a global study on how the virus affects cognition, long-term COVID trajectory and who is most at risk of having persistent symptoms. Anyone who has tested positive for the virus can enrol online and provide information about their experience and participate in 12 online brain tests. Data is still preliminary, but a pattern seems to be emerging.
“People do have cognitive impairments, there’s no question about it, and they’re actually quite extensive across the board,” says Owen.
Some research suggests age and severity of illness have an effect; in other words, people who are older and sicker are more likely to have long-term effects. But Owen says there’s a good chance that a cohort of younger people who weren’t hospitalized — like me — may face symptoms for at least several months following infection.
“Based on our preliminary data, it looks like the worse your COVID is, the worse your problems seem to be,” he says. “But you can be on the other end of the spectrum and be relatively asymptomatic and still suffer cognitive deficits at least in the first few months, although we don’t know about the long term just yet.”
The aftermath of COVID up close
Dr. Renée Janssen is seeing the impact of long-haul COVID up close.
As a clinician at St. Paul’s Hospital Post COVID-19 Recovery Clinic in Vancouver, Janssen has seen all kinds of symptoms, from brain fog to severe rashes to fatigue. The latter — which she describes as extreme tiredness despite adequate rest — is one of the more common symptoms her team encounters and goes hand in hand with insomnia; the less you sleep, the more likely you are to experience fatigue. The team has seen well over 160 patients, ranging from those who were in the ICU to others who had mild symptoms at the time of infection, but continue to feel unwell.
“We see people in the clinic and their tests come back normal, yet they still feel fatigued and short of breath, so it’s tough,” says Janssen. “Part of our work is to validate patients by saying yes, your symptoms are real even though we can’t capture them on an x-ray.”
I’ve been told my experience with sleep post COVID is anecdotal and doesn’t hold any real value. And while pandemic science continues to evolve — we don’t have much long-term data yet — it seems clear that at least some people continue to suffer long after initial infection, made increasingly evident by online support groups and long-hauler led surveys that have popped up over the past year.
Dr. Angela Cheung is co-leading the Canadian COVID-19 Prospective Cohort Study to determine short and long-term outcomes of patients with COVID-19. Based on her clinical experience, Cheung says most people who reach the three-month mark post-COVID start feeling better (at the time of our conversation, she gently reminded me that I’m just about to hit this mark, and the fact that I’m sleeping better lately is a good sign I’ll shake the insomnia eventually).
Cheung says for many people, a return to normal is all about pacing.
“You can’t just jump from zero to ten — if you were sick and not doing anything that’s a zero, and previously you were able to do a 10 but you need to work towards this,” she says. “You don’t want to overdo it because often times one step forward can lead to two steps backward and that’s the piece that needs to be learned.”
Cheung is part of a team who recently published a study comparing COVID-19 to the flu, and found the former is more likely to result in hospitalization and death. According to Cheung, this means it’s not surprising that the typical COVID-19 recovery period is longer than the typical flu recovery period. The coronavirus also isn’t the first virus to leave people with lingering effects. Research has shown some people infected with SARS and Ebola experienced similar symptoms including fatigue, sleep disturbance, muscle pain and cognitive impairments for months and even years following infection.
It does remain somewhat of a mystery as to exactly how this virus is causing a wide array of symptoms and it’s important to distinguish between what the virus is directly causing, what it’s triggering the body to do, and what it has indirectly caused by plunging us into this stressful pandemic world.
Recent research suggests the virus can signal the body to attack itself and cause inflammation, which in turn, can cause muscle soreness. Other research has shown organ abnormalities and changes in regions of the brain after infection. It’s also possible that lingering symptoms are repercussions of infection, similar to concussion where you aren’t constantly hitting your head, but the initial insult causes ongoing symptoms like headaches and dizziness as your body tries to heal.
Owen says it’s important to grasp the magnitude of these long-term symptoms now.
“If someone has been in the ICU on a ventilator, and a year from now, they go to their employer and say, ‘I’m still not back to normal,’ the employer will probably not worry about whether that’s reasonable or not,” he says. “But what about people like you? Is it going to be reasonable in a year from now to say to your employer, ‘I’m sorry, but I’m still not back to normal?’ As a society we really need to understand this because we’re not talking about a dozen people, we’re talking about tens of millions of people who could be saying a year from now they still don’t feel like they’re back to normal.”
In many ways I’m lucky. I have a job, a safe place to live and a partner who still enjoys my company despite spending more time with me over the past year than he probably ever imagined possible. Trouble sleeping is the only symptom I’m struggling with, and I’m doing better these days. Both Janssen and Cheung advise their patients to focus on sleep hygiene — things like avoiding screen time before bed and having a nighttime ritual (I admit to failing on the first count).
And, although it’s been a bit of a long-haul, as I hit the three month mark post-COVID, it feels like a good night’s sleep might soon be within my reach.
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