Narcolepsy: Living with the condition which makes you fall asleep in meetings and unable to drive

Three people with the condition talk to The Independent about how the illness affects their lives

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At school, Susie Cunningham was nicknamed ‘snoozy Susie’. She earned the nickname from classmates noticing how often she would fall asleep in the middle of class while they were all learning important modules for their GCSEs.

While it was probably little more than juvenile teasing and a joke for her classmates, the comments were not funny for Susie, 30, who was very aware that her sleeping habits were not normal.

“I never knew why I was how I was,” she told The Independent. She spent her twenties trying to find a solution through food, travelled to India for treatment from an ayurvedic doctor, underwent acupuncture and took up yoga but nothing worked. In her late twenties her symptoms became chronic.

“The incident that made me scared was when I was on the back of my boyfriend’s motorbike and I fell asleep,” she explains. “That was when I knew there was something really wrong. I was getting quite scared at this point.”

After her boyfriend became concerned over the nightmares and sleep paralysis she was experiencing, she went to a sleep clinic and after falling into REM state within five minutes at five scheduled naps, she was diagnosed with narcolepsy at 28-years-old. Most people fall into REM sleep around 90 minutes after falling asleep.

Narcolepsy is a neurological condition which affects the brain’s ability to regulate the normal sleep-wake cycle which most of us are attune to. The most common symptom is excessive daytime sleepiness with sufferers unable to control the overpowering urge to fall asleep at inappropriate time during the day.

There are two main variants of the condition: narcolepsy with and without cataplexy, which is a temporary, involuntary loss of muscle control.

Narcolepsy UK estimates there to be around 30,000 people in the UK with the condition. Life with the illness can be extremely debilitating and people can often not do the same things many of us without the condition take for granted, such as driving. According to Narcolepsy UK, it is estimated the majority of the 30,000 UK sufferers have not yet been diagnosed.

Susie finds she mostly falls asleep when her body enters a relaxed state. So, if she is walking or undertaking her day job, she is able to be awake. However if her body relaxes in any way ,by sitting down for example, often in meetings at work, she will have trouble staying awake.

Kellie Love was in and out of hospital with her narcolepsy and various healthy problems for many years before finally being diagnosed. Immediately before she was, she requested tests for both cancer and HIV sure of the fact that something serious must be wrong with her due to the ferocity of her symptoms.

 

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As an athlete (a tai Kwando Great Britain representative) in her twenties, Kellie, 47, says when she was not training she was sleeping. She first started to worry about the frequency of her “unbearable exhaustion” when she had children years later. After initially putting her tiredness down to being a new Mum, she noticed that she was scheduling her sleep to fall in line with whenever her newborn would be sleeping.

There tends to be a misconception about what narcolepsy entails and Susie says most people think sufferers fall asleep while standing up and drop down to the floor in a dramatic fashion.

Narcoleptics can experience is ‘sleep attacks’ which can come on very suddenly. Kellie says: “It starts with really uncontrollable yawning, my eyes water and there is a wave that comes over me which is like all the life you have in you being sucked out of you

“It looks like you’ve become completely bored of anything, it’s embarrassing because you can’t stop yawning and you’re not picking up what people are saying around you because all you’re doing is fighting an urge to sleep,” she explains.

As well as the severe symptoms and concerns of narcoleptics, they also can miss out on the everyday things people without the condition take for granted.

“I haven’t watched a film in completion for years or years, I don’t watch any series, I don’t get to daydream,” Susie says. “The worst part is not having conscious relaxed time.”

“I find I can be quite cranky and impatient because I’m fighting time all day. Most people have 12 hours in the day to do things, I don’t know how much time I’ll have each day,” Susie says.

There is no cure for the illness although some medication can help alleviate the constant overwhelming feeling of tiredness. Susie has found it managed her symptoms a lot, though has had to recently come off it after falling pregnant and is back to falling asleep four or five times a day.

Juan Nuevo, who was born in Menorca, Spain, and has lived in Bristol for almost thirty years does not remember life without narcolepsy. He chooses not to take medication because he hasn’t found it to benefit him.

After leaving school at 14 because he kept falling asleep uncontrollably, a family friend who was a student doctor suggested Juan had narcolepsy however he was not diagnosed until he was an adult and had moved to the UK.

“When my kids where young, I would fall sleep pushing the shopping trolley and my daughter would grab my hand and wake me up,” he told The Independent. “Then we would go and sit down and have a little power nap while she would look after me, my little guardian angel. I have a very strong discipline, if I go anywhere, I need to sleep before I go out and definitely will go to sleep once I am back.”

Despite the enormous obstacles in his path, Juan has tried to fulfil his pledge that he would not let narcolepsy hold him back. He has travelled the world, worked as a volunteer in the Calais refugee camps, is an elected town counsellor and soon is hitchhiking from his home in Bristol to John O’Groats, Land’s End and back to raise money for narcolepsy and cataplexy.

“I haven't talked about my narcolepsy and cataplexy to much… But during the last few years through Facebook groups and chats, I have discovered many young people that are in desperate situations some of them have even talked of suicide. I want to reach out to them and show them that there is life with narcolepsy. We just need to find a way to live life on our terms be ourselves and find a strategy that we can cope with.”