Personal trainer with narcolepsy mistaken for a drunk

A woman who suffers from narcolepsy has discovered that exercise is the only thing that keeps her awake.  

Belle Hutt, 23, who lives in Amsterdam with her boyfriend Maikel, became a personal trainer after giving up her dream of working as an interior designer because she couldn’t stay awake long enough to hold down an office job.

The Brit, who first developed narcolepsy when she was 15 triggered by a swine flu jab, can fall asleep as many as 15 times a day and suffers hallucinations.

In a BBC Three short film, Belle explains how strangers often mistake her ‘sleep attacks’ for drunkenness, and she has even been filmed as though she were a ‘circus act’.

‘There are days I do give up and those days make me super sad and I call my mum crying,’ Belle said of her condition. ‘I don’t want to do anything apart from sleep. Narcolepsy has changed my whole life.’

Belle Hutt, 23, was finally diagnosed with narcolepsy when she was 17 after suffering symptoms for a couple of years. She went to the doctors after falling asleep in school

Belle's boyfriend Maikel is extremely supportive of his girlfriend and feels very protective of her

He is attuned to her episodes and can sense when she is falling asleep

Belle’s boyfriend Maikel is extremely supportive of his girlfriend and feels very protective of her. He is attuned to her episodes and can sense when she is falling asleep 

Belle was 17 when she was officially diagnosed with narcolepsy after she began to fall asleep in every single class at boarding school.

Along with her classmates she had received a swine flu jab following the outbreak in 2010, and was one of the ‘unlucky few’ who developed narcolepsy which it later transpired had affected one in 55,000, according to a study from Public Health England.

Soon after Belle was forced to drop out of school, with the condition having a huge impact on her social life.

She said: ‘If four years ago you were to be put me in this position and tell me by the way you will have to sleep eight times a day, you won’t really be able to sit down and have lunch, dinner or breakfast without falling asleep, I would be like there is no point in living. I wouldn’t want to live.

 After dropping out of school because she couldn't stay awake in class, Belle gave up on her dreams of becoming an interior designer and instead focused on exercise as it was the only activity that kept her awake

 After dropping out of school because she couldn’t stay awake in class, Belle gave up on her dreams of becoming an interior designer and instead focused on exercise as it was the only activity that kept her awake

The personal trainer said she can suffer sleep attacks up to 15 times a day

Belle can fall asleep anywhere and when in public other people often assume she is drunk and have filmed her

The personal trainer said she can suffer sleep attacks up to 15 times a day. Belle can fall asleep anywhere and when in public other people often assume she is drunk and have filmed her 

‘The narcolepsy has changed my life. I don’t really go out and socialise that much in the evening.

‘I suppose I am paranoid and get very panicky if friends invite me out, because I want to go and experience that sort of stuff with them, but I’m so scared that I will fall asleep.’

Belle said of her time at school: ‘At school I remember there would be people who would tap each other, they would film me, my friends would have drawn on my face like countless times.

‘Actually the teachers were the worst, because they would be like “Belle what were you doing last night or Belle maybe don’t go out so late”. 

Belle can suffer sleep attacks anywhere at any time and says that she struggles most to sleep at night time. Pictured, Belle having a momentary sleep lapse on a train

Belle can suffer sleep attacks anywhere at any time and says that she struggles most to sleep at night time. Pictured, Belle having a momentary sleep lapse on a train

She said that she can't enjoy a meal without worrying about falling asleep and even avoids social situations because she is 'scared and paranoid'

She said that she can’t enjoy a meal without worrying about falling asleep and even avoids social situations because she is ‘scared and paranoid’

‘Actually I remember a teacher threw a pen at me once and were like “Don’t fall asleep in my class. Am I that boring?” so that’s why I actually left school.’  

The one constant in Belle’s life who has helped her manage her narcolepsy is her mother Debra, and her boyfriend of three years Maikel.

Her mother explains that her ‘biggest scare’ for her daughter is the hallucinations she suffers.

‘Thinking that there is somebody who is stood outside her bedroom, or there is somebody coming in bedroom, or there is somebody holding her down and when you’re not there it is very scary because is there actually somebody in the house, is there somebody going in her bedroom because she really does believe there is somebody there? 

Belle and Maikel first met three years ago on a ski trip where his twin brother noticed that she was falling asleep at the dinner table, Maikel decided to learn everything he could about her condition

Belle and Maikel first met three years ago on a ski trip where his twin brother noticed that she was falling asleep at the dinner table, Maikel decided to learn everything he could about her condition

Now a personal trainer Belle said working out gives her a euphoric feeling, but after any session she always takes a nap on a yoga mat which her employers are very understanding of

Now a personal trainer Belle said working out gives her a euphoric feeling, but after any session she always takes a nap on a yoga mat which her employers are very understanding of

WHAT IS NARCOLEPSY?

Narcolepsy is a rare long-term brain disorder that causes sufferers to suddenly fall asleep at inappropriate times.

It affects around 30,000 people in the UK and 200,000 in the US.

Symptoms include:

  • Excessive daytime sleepiness 
  • Falling asleep suddenly without warning
  • Temporary muscle control loss, leading to weakness and collapse
  • Sleep paralysis
  • Excessive dreaming and nighttime waking 

Narcolepsy is caused by lack of the brain chemical hypocretin, which regulates wakefulness.

This is thought to occur due to the immune system attacking cells that produce hypocretin or receptors that allow it to work. 

It can also be triggered by hormonal changes, stress and infections. 

There is no cure.

Sufferers are advised to have frequent naps throughout the day and stick to a strict bedtime routine. 

Medication can help to reduce daytime sleepiness and prevent loss of muscle control.

Source: NHS Choices 

‘Every parent worries about their children. Less so now because Maikel is a huge support.’ 

Explaining how protective he feels of Belle, Maikel says: ‘Remember when we were in Paris and people were just staring like you were some sort of circus act? That was one moment where I was really close to stepping in.’

He’s become attuned to Belle’s episodes, and just as she’s nodding off on his shoulder during filming he explains that she often keeps fighting back the sleep but he prefers she naps to be safe. 

‘She is always in shock when she wakes up, and her first question is always “how long was I gone for?”’

Minutes later Belle does exactly that and is surprised to learn she’s only been napping for ten minutes.  

The pair have worked out a perfect routine together and Belle’s gym employers fully understand her situation; after taking a class the trainer will often have a 10-15 minute nap on a yoga mat under a blanket.

Engaging with fellow narcolepsy sufferers with the hashtag #energeticnarcoleptic, Belle is hoping to inspire others to not let the disorder take over.  

‘I don’t think I could have got to where I am today without my mum and Mikael,’ she says. ‘I think those two are the ones that really stand out.

‘I will do everything I can to overcome every aspect of narcolepsy because I have got it, but it doesn’t have me.’ 

Belle’s BBC Three short film ‘I can’t stop falling asleep’ is available to watch now on BBC iPlayer

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