World Narcolepsy Day: what it’s like to live with the illness

Sept. 22 is Narcolepsy Awareness Day. We meet Michelle Weger who lives with the condition to tell us more about it and why it's commonly misunderstood.

It’s World Narcolepsy Day and one advocate says the illness, which affects the brain’s ability to regulate the sleep-wake cycle, is commonly misunderstood.

“Narcolepsy is a disruption of the sleep-wake cycle,” Michelle Weger, an advocate and author living with narcolepsy told CTV Your Morning Ottawa on Monday.

“What that means in normal terms is if you charged your phone battery all night long, and you wake up and it’s still at 40 per cent, never more. Imagine going through your day like that, 40 per cent, at best.”

Weger says even though she might fall asleep easier than others, her life doesn’t match up with common depictions of the illness.

“In comedy, narcolepsy is depicted as, I would fall asleep during this animated conversation, and it would be funny, and that’s not real life,” she said.

“Yes, I fall asleep very easily if it’s a quiet moment, as a passenger in a car, game over.”

According to Weger, because narcolepsy is so misrepresented, some people may not realize they have it.

“Because its depicted so extremely, and with comedy, it’s not great for people to actually know if they have it or not,” she said.

Weger says despite feeling tired “all day, every day,” she manages to live a rewarding life.

“It’s about managing the forty through to zero, that’s what we want to try and manage. We can never be normal, but with medication, we can at least participate in society and be able to have fulfilling lives still,” she said.

One of the ways Weger manages her illness is with help from her service dog Quinn, who will gently put her mouth around Weger’s forearm as a warning.

“So having a service dog allows me to feel safer, because she will alert before I fall asleep so I can sit down before I fall down,” she said.

Weger says that she keeps Quinn happy by feeding her two pounds of raw meat per day, and by making sure she gets plenty of exercise.

To keep her spirits high despite her illness, Weger relies on advice which she says anyone could take to heart.

“The way I keep my spirits up is I try and spend my energy on the people, places and things that give me energy, rather than deplete them. This is a tactic for everyone to use.”

Diagnoses are made through sleep studies, in which participants are monitored overnight and during the day, says Weger. During the day period, participants are given four chances to nap, all of which are monitored.

“People with narcolepsy go into REM, the dreaming sleep, in those naps and typical people do not, so it’s an easy diagnosis when you finally get that test,” she said.

• Sign up now for daily CTV News Ottawa newsletters
• The information you need to know, sent directly to you: Download the CTV News App