Belle Hutt was studying for her GCSEs when she began struggling to stay awake in class.
Despite getting a full night’s sleep, she was battling with an urge to close her eyes and snooze.
“I had no idea what it was, so I’d just get up and go to the loo to wake up. Then I’d come back and be fine,” she told The Mirror.
Over time, the bouts of exhaustion became more frequent, until eventually they were happening every day.
Things came to a head when Belle was 16 and something strange happened in a biology exam.
“In the middle of the exam I started to write a note out to my dad in perfect handwriting. I didn’t even realise I was doing it,” she explained.
“It was like I was dreaming before I’d even shut my eyes.”
Later, Belle went home and told her worried mum, Debbie, what had happened.
Meanwhile, she was still having daily sleep attacks and struggling to stay awake during the day.
As her 17th birthday approached, Belle was getting ready to learn how to drive and had taken her theory test in anticipation. But Debbie was concerned.
“My Mum wanted me to see a doctor before I got behind the wheel as she wasn’t comfortable with me driving,” Belle said.
After seeing her GP, the teen was advised to go to bed earlier and stop looking at her phone late at night.
“That didn’t seem right to me - I was already going to bed so early because I was exhausted,” she said.
In time, she was referred to a sleep specialist. After several tests, Belle was diagnosed with severe narcolepsy, a chronic sleep disorder.
As the doctors explained the diagnosis, Debbie asked what could be done to cure the condition.
“The doctors bluntly said: ‘There’s no cure. It’ll only get worse’,” Belle recalled.
As her symptoms worsened, she noticed people making fun of her.
“I was always the first to fall asleep at parties so people would draw on my face and do silly things like that.
“After a while I stopped going to parties. I didn’t even worry about missing out because I was so exhausted.”
In time, the bullying became so bad that Belle decided to leave school. By now, she was having sleep attacks between three and four times a day. Instead of allowing herself to nap, Belle fought the urge to fall asleep. But this brought on hallucinations and cataplexy.
Cataplexy, commonly associated with narcolepsy, is a sudden loss of muscle strength triggered by an intense emotion such as laughter.
“It would only last for a few seconds, but sometimes I just wouldn’t be able to talk,” she explained.
Perhaps the most frightening symptom Belle experienced was hallucinations when she was wide awake.
“I’d be at home alone and I’d hear people open my front door, walk up the stairs and walk into my bedroom. I’d see them looking at me. It was so real,” she told The Mirror.
“Because I was so scared, that would trigger cataplexy and I wouldn’t be able to move.”
For three years, Belle battled to stay awake through the sleep attacks, trying to keep active instead.
Belle said: “I started personal training when I was 19, I just had a few clients I’d see one-to-one from the gym in our garage.
“I felt like I’d never be able to work for anyone else so this was my only option.”
Around the same time, she met her now-fiancé, Maikel. After three years of dating, Belle moved to Amsterdam to live with him.
“I thought I wouldn’t be able to work and needed someone to look after me,” she said.
But eventually, a friend told her about People’s Place Gym in the city, which was looking for fitness class instructors.
“I started working there and they were so good about everything. They’d let me take mats and blankets for naps during the day if I needed them.”
After leading a few classes at the gym, Belle realised something.
“I felt such an incredible buzz and I was so awake. I realised I could lead three classes a day and fit in naps in between,” she explained.
Things were going well until coronavirus raged around the globe and gyms across Europe shut their doors.
Instead of sitting around waiting for them to reopen, Belle took matters into her own hands, and began leading live workouts on Instagram every morning.
And it’s worked wonders for her narcolepsy symptoms.
“I started doing 100% more exercise than I was before, leading workouts every day,” she said. “Since becoming fitter and stronger, I’ve not suffered from cataplexy for about a year. It’s given me so much more control over my day.”
She now runs the @BelleHuttLiveCommunity on Instagram, leading live workouts every day for more than 1000 people who attend her classes.
She also uses her personal account @BelleHutt, which has more than 33,000 followers, to dispel common myths about narcolepsy.
“People think I just need more sleep than anyone else, but actually I find it hard to sleep through the night,” she told the Mirror. “I take medication at night now which helps me sleep for longer, but before that I was getting two hours of broken sleep a night.”
She described narcolepsy as having a disrupted body clock, so the body gets confused about when it needs to sleep.
Using her platform to explain the condition, she also wants to tackle parody depictions of the sleep disorder.
“I’ve seen comedy characters who have narcolepsy as people who just fall over and sleep in the middle of the day, and that’s really not what it is,” she explained.
After discovering the wonders of regular exercise, Belle wants to inspire people to move their bodies for their own mental wellbeing.
“So many people label exercise as for fat loss, but I want people to realise it’s great for your mental health.
“You don’t have to be at the gym, or even wearing trainers. You can be dancing around the living room in jeans if you want, but it feels so great to move your body.”
