Even on a busy day, it’s difficult for Emma Cooksey to stay awake after having nightly fights to fall asleep, but with a long drive and backed-up traffic, the risk level was that much higher.
Blasting music and the A/C kept her attention span engaged. Her eyes stared straight ahead, trying to focus on the license plate of the truck in front of her, slowly it grew closer and closer and closer.
Before she knew it, Cooksey slammed on the brakes to save herself from crashing.
The startling jolt reaffirmed a belief in Cooksey, that her chronic fatigue was the cause of a lot more than just a bad night’s sleep.
Listen to Emma’s story by clicking on the audio reading.
Everyday exhaustion
From a young age, Cooksey had difficulty sleeping. She would often wake up feeling unrested, exhausted, and groggy.
“I just would wake up all the time, multiple times, and I would wake up in the morning and feel like I hadn’t really been to bed,” said Cooksey. “I realized that even though I had the opportunity to sleep, I still felt exhausted and sleepy during the day to the point where it didn’t feel normal to me.”
From her early 20s to her 30s, Cooksey’s schedule continued to change. From schooling, to work, to having a baby, the young mother’s life was busy as could be — the one thing that never changed was the struggle with sleep.
“Some of the symptoms, which were affecting me every day, were just having really intense daytime sleepiness,” said Cooksey. “I was just told that it wasn’t [my] sleeping, or it wasn’t a sleep disorder – I was told that sleep disorders were very rare.”
Doctors blamed Cooksey’s lack of sleep on being a new mother, despite her insistence that her baby was sleeping through the night.
It wasn’t until she almost crashed her car that doctors finally started listening to her issues —the result was a diagnosis of obstructive sleep apnea (OSA).
Sleep apnea
Sleep apnea is a condition where an individual stops breathing multiple times throughout the night, resulting in a lack of oxygen to the body and restless, uneven sleep. In a 2016/2017 survey, 6.4 per cent of Canadians reported they had been diagnosed by a healthcare professional with sleep apnea.
There are two branches of sleep apnea, the first being obstructive, where the upper airway becomes blocked many times while you sleep. The second is central, where the brain does not send the signals needed to breathe. Obstructive sleep apnea is the most common type, but diagnosing sleep apnea can be difficult because of the need for a polysomnogram (an overnight sleep study) — something that isn’t accessible to everyone.
Treatment ranges from medication to surgery, but the most common way of dealing with the condition is the use of a continuous positive airway pressure machine (CPAP), which blows oxygen into the airway to ensure breathing.
“I went undiagnosed for 10 years,” said Cooksey. “There weren’t really a lot of resources for young women with sleep apnea and trying to use CPAP machines, there just wasn’t a lot of information out there.”
With a lack of resources to help her learn more about her own sleeping disorder, Cooksey decided to start a podcast. She began talking to others to learn about their stories and different treatments, hoping to make it a place where people could come to chat and understand more about sleep apnea.
“There is just not that many people out there in the world talking about sleep disorders, it’s a small community of us,” said Cooksey. “I was dealing with anxiety and depression this whole time…I always felt like it was only me, but the biggest thing about my community that has just completely flipped my perception of that is that pretty much all the people I talk to have had some kind of mental health impact.”
A large community has rallied behind Cooksey, all understanding her struggle with mental health.
One study found that “among the 857 people identified as having OSA or other type of breathing related sleep disorder, the prevalence of major depressive disorder was 17 per cent, while the prevalence for the whole sample was 4.3 per cent,” showing just how much Cooksey’s podcast was needed.
Cooksey herself uses a CPAP machine — allowing her nine hours of sleep a night now — but she always looks to her community to learn how to better advocate for herself and those around her. With both her podcast and as a member on the board of directors at Project Sleep, Cooksey is aware now more than ever. Project Sleep is a non-profit organization that looks to raise awareness around sleep health, sleeping disorders, and sleep equity.
“I genuinely love doing my podcast every week, and I feel very fortunate that I keep finding interesting stories to share with people,” said Cooksey. “We’re all about raising awareness of sleep disorders, sleep health, and sleep equity.”
117 – Lindsay Scola – Narcolepsy and UARS – "Is YOUR Tired Different?" – Sleep Apnea Stories
