Editor’s note: Since we first published this account, insomnia and sleep problems related to COVID-19 have been widely reported. Check our blog regularly for tips on resetting your sleep in 2021.
My lungs have shut down. Breathing is no longer a thing my body just does on its own; it takes effort… and hope. A constant pain thrums in my chest. My heart races. I’m terrified that if I fall asleep, my body will forget how to breathe. I sit upright in bed, the digital clock casting a blue glint across the room. Worry claws at the frayed and tattered corners of my mind. Will this be the night I finally end up in the hospital, plugged into a machine?
Michael, my husband, is sleeping in the guest room down the hall. He’s tested negative, but my COVID is wearing on him, too. I’ve mapped in my mind all the steps I’d take to get to him if I need help. Two breaths to get to the door, another three down the hallway. Another to say the words, “Call 9-1-1.” I wonder how many more breaths it will take before the ambulance arrives. I make a mental note to Google that.
Come morning, I rise, my lungs fill, I go to work as if my body wasn’t deteriorating from the inside out. At work, no one knows I’m sick other than HR. They’ve offered all the support and time off I need, but I choose to work. It keeps me sane. Working from home all these months has allowed me to keep this secret from everyone else. Zoom meetings have become the way the world does business, and that’s fine with me. The mute button affords the small dignity of hiding my labored breathing, my staccato gasps. I don’t know why I can’t bring myself to tell anyone besides family, and even they don’t know the extent of it. I’m not worried about spreading the virus because we’ve self-isolated. No one in, no one out. Maybe the Instacart guy is the only one who suspects.
It feels like a stigma though. I don’t know how friends will react. I look fine, I function fine during the day. I have no fever or flu-like symptoms. It’s only at night that the beast comes out. Normally, I’m not one to suffer in silence, but this is different. Until I know I’m on the other side of it, I just cannot give it any more precious oxygen than it has already taken from me.
Nighttime becomes an internal negotiation that goes like this: struggling on every fifth breath is acceptable. When it gets to every three, get out of bed. When it’s every other breath, call an ambulance. Self-doubt plagues me each night, made even murkier by fatigue. If I go to the ER, I’ll just be sent home in the morning. This beast lives in the darkness.
I sleep propped up on pillows. Wasn’t there something on the news about how nurses were turning COVID patients on their stomachs to help them breathe? I try that. I try breathing exercises. It all helps, until it doesn’t. I’m learning as the weeks wear on that even the smallest amount of exertion during the day exacerbates my symptoms at night, and sleep is the only thing that relieves them. One night I sleep for 11 hours straight, something I haven’t done since high school. There are manageable nights where sleep comes easily and quickly and others that feel like an eternity. The worst part is not knowing what to do as I slip into choked breathlessness wondering if I’ll make it through. At some point, I’m so exhausted that I really don’t care.
Some nights I wish to forget.
Night #21 was the night I wrote the letters, imaginary pen to imaginary paper. First to my son Finn. I told him that being his mother was the great honor of my life. I wrote my daughter how proud I was of the person she was becoming, how in awe, how dazzled I was by her. How sorry I wouldn’t be able to see them grow up.
My mom calls me the next morning, “Did you get a good night’s sleep, honey?”
“Yes,” I lie. “I’m fine, I promise.” I regret telling my parents, saddling them with worry.
My dad gets on the phone. “We’ll bring you some soup,” his voice cracks, and this does me in. I’m supposed to be the one taking care of him, of them, not the other way around. This virus is relentless on 84-year-olds like my father. It sickens me to think I could give it to him, or to anyone. So, when the weather turns nice in early May and people start going out, I stay in.
Around Day #25, I feel myself pressing against the edge of depression. I haven’t crossed the threshold, not yet, but I can feel its dry surface against my skin. How can anyone be sick for this long? When will it end? What is this thing doing to my lungs, my heart, my liver, my kidneys?
On Night #27 I’m sound asleep, but the vigilant watchman inside of me is not. She’s on full alert, checking that air is coming in, going out. I know this because the next morning Michael wonders if I remember waking him to ask him if I was breathing. I have no recollection of it.
During the days, I seek answers in the news, I check in with my doctor by video. I research anti-inflammatory diets, I call the emergency department at the hospital twice because I want someone to tell me that I’ll be okay, even though I know they can’t say that over the phone. My sister in California sends me a pulse oximeter the moment Amazon has them back in stock.
As a last resort I check message boards and here is where I finally find some comfort. In these chats, my story is repeated hundreds and hundreds of times by people who are suffering the same symptoms, the same worries, the same disbelief at the duration of their illness. We all want to know we’re not alone. We are the people who don’t make it into the news stories. We don’t have flu-like symptoms. We’re too well to go to the hospital, too sick to enter the outside world. We all experience the same nighttime terror, the anxiety of not knowing how much worse it will get. Many, like me, tested negative, but were told by ER doctors to ignore the test. I read stories of people whose families think they’re faking it. I read of people who feel the toll this is taking on their mental health, who fear repercussions from their community or losing their job.
I keep a daily log of my symptoms. Day #32 reads, “No issues last night. Woke up feeling good. SYMPTOM-FREE ALL DAY! We’ll see what tomorrow brings, but I think it’s over.”
For more information on sleep and COVID-19, read our newly released report: Sleep and Mental Health Amidst the 2020 Coronavirus Pandemic.
Keep a sleep diary automatically to keep track of behavioural changes. Sleep Cycle can help guide you in the right direction.