health

What it's like to live with the constant "sleep attacks" that come with narcolepsy.

Image: iStock. “I always felt sleepy during the day.”

Imagine feeling a tiredness that simply overwhelms you. Imagine slumping over, as your limbs go numb, while your mind is very much awake. Imagine having people assume that you are a drug addict, because you fall asleep constantly and shake uncontrollably. This is Karen’s reality, because she suffers from narcolepsy.

Related: Are you groggy and disoriented when you wake? It’s a medical condition. 

Karen is 33-years-old and lives in Sydney. She was diagnosed with narcolepsy and cataplexy in November 2014. She describes narcolepsy as a neurological sleep disorder, causing her to be constantly tiredness. Evenings bring her little relief, as she wakes every two hours. She says, “During the day, I get very sleepy, and I can’t stop it.  It’s an overwhelming feeling. It’s like someone being awake for 48 to 72 hours – that’s the tiredness I feel.”

The Sleep Foundation (an American body) describes cataplexy as a “specific symptom” of narcolepsy, in which the muscles of the body become weakened, especially after an emotional reaction (such as laughing or crying). Curiously, Karen’s twin sister was diagnosed with cataplexy eleven years ago.

Related: The real reason for your lack of sleep. And no, it’s not your phone.

During her teenage years, Karen remembers that she “always felt very sleepy during the day”. She could manage her tiredness by napping once a day. It wasn’t until a series of difficult life events in late 2014 – such as the breakdown of her marriage – that Karen began exhibiting symptoms of narcolepsy. Karen believes that the stress of these events triggered her sleep disorder.

Image: iStock. , “I couldn’t wake up, a couple of times, so it was pretty scary for the co-workers."

It was Karen’s psychologist who initially noticed that something was wrong. During a session, Karen had a cataplexy attack, in which her body became numb and limp, and she slumped in her chair for two minutes before recovering. During this attack, Karen said that she was “fully conscious”. Her psychologist immediately suspected that Karen had a neurological disorder, and helped get Karen in touch with a GP and sleep specialist. After an urgent sleep study, Karen had her diagnosis.

ADVERTISEMENT

Related: 6 things you had no idea your body did while you sleep. 

Karen describes her initial reaction to the diagnosis as one of relief, but later, one of frustration. “I’m angry,” she says, as she will have this condition for life.  She tries to fight her cataplexy attacks. “The more you fight it, the harder it comes. I punch my legs, I try to move, and I can’t. I get upset, and I wish that I could be normal again. It’s affected me so much.”

Currently, Karen treats her narcolepsy with medication twice a day. She also takes an antidepressant to help manage her cataplexy, which is triggered by emotions. She says that she is on a “long journey”, as she needs to find the right mix of medications to manage her disorder.

During all of her life upheavals, Karen’s job as an aged carer, specialising in caring for patients with dementia, was her one comfort. Sadly, her bosses recently suggested that she resign, as they were concerned about safety. They have given her the option of returning to work, when her condition improves. She had experienced several episodes in the workplace (she can have up to six narcoleptic attacks each day). Karen says, “I couldn’t wake up, a couple of times, so it was pretty scary for the co-workers and the residents as well. I didn’t feel safe myself.”

Related: Health researchers want you to stop working so late. 

Throughout all of this, Karen has the support of her friends and family. She fondly recalls how, when she is shaking uncontrollably, her children will break into “Shake It Off”, by Taylor Swift, to help cheer her up. Although Karen’s social life has changed – she can no longer go out at night, because of her condition – she has a small group of friends who support her.

She is restricted to only going out to familiar places, where she knows she will be safe. Of her life changes, Karen says, “I laugh about it a lot, but some days, it gets me really, really down. I cry, and I think, ‘Why me? Why am I cursed with this?’ I’m grieving for the old me. It’s an actual, real, neurological disorder. I can’t help it. But, I can manage it with the help of my doctors, family and friends. I’m keeping positive.”

She spoke of her passion for raising awareness of the realities of narcolepsy and cataplexy. For those suffering from narcolepsy, she offers this advice: “Be patient with yourself. Cry, laugh… you have to go through the emotions when you’re first diagnosed. You can’t just say, ‘oh, well, I’ll deal with it'. Your life is going to change, and you have to be ready for it.”

Related: My wedding day decision made everyone judge me, but I did it anyway. And I don't regret it.

We love that Karen's kids cheer her up with some Taylor Swift tunes. Here's the best of Taylor's Instagram.

The Glow was put in touch with Karen by Narcolepsy Australia, which is a support group for those with the disorder. Karen was generous in sharing her story with us, so that people can gain a better understanding of this devastating disorder.

00:00 / ???