By Danny Baggott @Dan_Baggie
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Videographer / director: Marcus Cooper
Producer: Danny Baggott, Ruby Coote
Editor: Marcus Cooper
For most people, sleep is a luxury, but for Belle Hutt, it’s something she spends most of her time trying to avoid.
Whether she’s sat in a restaurant with a group of friends, or she’s on the sofa at home watching a film, the 23-year-old has to battle excessive sleepiness, hallucinations and cataplexy on a daily basis.
Belle, from Surrey, was diagnosed with the condition when she was 17. It was impossible for her to study and she had to drop out of college.
Narcolepsy has since left her unable to work a full-time job, but fortunately, Belle has found two big saviours in her life – personal training and her boyfriend, Maikel Breukelman.
Belle told Barcroft TV: “Maikel is one of a kind in the way that he deals with what I’ve got. I couldn’t have got to where I am today without him.
“I mean, there are days when I still do give up.
“Narcolepsy has changed my whole life. They say that people with narcolepsy feel as if a normal person was not to sleep for 48 hours and then just be put in a working day. That’s how I feel every single day.
“If four years ago you were to put me in this position now and tell me ‘by the way, in four years you 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 have been like, ‘there’s no point in living. I don’t want to live’.
“I had to leave school, I couldn’t finish my exams and I really struggled with where my life was going.
“But fortunately, I realised that when I was in the gym, doing running or high-intensity workouts, that’s when I feel most amazing and actually in control. So I decided to become a personal trainer.”
Belle began to hope that keeping active would help manage her condition.
She now works out at least three times a day at a local gym and regularly teaches classes to a number of clients.
People are often shocked when Belle reveals that she manages to be a personal trainer, despite suffering with extreme narcolepsy.
And so she has recently started a hashtag #energeticnarcoleptic where she documents her workouts and how she deals with her condition at the same time – all in the hope of raising awareness to others.
“I have actually never met anyone with narcolepsy,” Belle said.
“So about three years ago, I decided to start the hashtag for narcoleptic people around the world.
“It’s had such a great response and I absolutely love writing, so I’ve decided to start a blog about it too. It’s important for me to try and help others.”
Belle often experiences episodes when she is out in public and still struggles to come to terms with how certain strangers can stare, point and laugh at her.
She said: “People often think I’m drunk.
“They sit there and laugh – and even film me. I can just see them out the corner of my eye, it’s really embarrassing.
“That’s another reason why I want to raise awareness. And so I decided, to make things easier, I wanted to create an alter ego for the times when I do experience an episode and turn into this completely different person.
“I call her ‘Nadie'. She takes over and doesn’t have any feelings for me. So when I talk about narcolepsy, I talk about Nadie instead to separate my real self from it all.”
Belle has also experienced bad luck with ex-boyfriends and how they would react to her ‘embarrassing them’ in public.
“I’ve had previous boyfriends who would wake me up all the time and raise their voice at me in public,” Belle said.
“I’m so thankful to have Maikel now.
“We met three years ago, on a skiing holiday. Maikel is originally from the Netherlands and so after a while, we decided to move to Amsterdam to be together full time.
“I was a little bit scared and nervous at first of making such a move with my condition. Especially moving away from my mother.
“But Maikel has been a big part of making my life easier. I came here with no job, I just wanted to aim for something and create a better life and he’s been so supportive of that.”
Maikel, 28, also told Barcroft TV: “So when Belle is drifting into an episode, I can notice it straight away because one moment we are talking and she is quite lively, and the next she is just gone and doesn’t really know what she is saying.
“We used to try and watch films together, or a series, but that isn’t fun because she’s asleep most of the time.
“If she doesn’t sleep throughout the day, she will try her best to keep fighting it off. It’s really hard for her.
“But Belle’s confidence has improved so much over the last few years and I’m really proud of her for that. I love her very much.”
Belle still tries her best to travel back to the UK and visit her mother, Debra and sister, Cheska, every few months.
Debra was a huge support for her daughter, making sure she got through her darkest moments when growing up – particularly those at school when other pupils would cruelly draw on her face when she dozed off in lesson.
Debra said: “When Belle was first diagnosed with narcolepsy, my biggest concern was leaving her alone. Is she going to leave the straighteners on? Is she going to leave the gas cooker on? That was always the worst fear because I knew she wasn’t in control.
“Her confidence began to change with the diagnosis, she was bullied in school and couldn’t do what the other children were doing.
“Since Belle has moved away, I do really miss her. We were joined at the hip and I was very protective of her.
“The biggest scare for me is always the hallucinations. When she thinks someone is outside her bedroom, or someone is holding her down on the bed. She’ll ring me crying and that’s hard to deal with being so far away.
“But absolutely, it was the best thing for her to do looking back. I worry about her less because Maikel is a huge support.
“Could I live with Belle’s condition? Not as well as she does, not by any stretch. I am extremely proud of her and what she has achieved.”
Despite the daily battles Belle endures with Nadie and trying her best to stay awake, she has managed to achieve much more than she had ever expected.
“I couldn’t have got to where I am today without my mother and Maikel,” Belle said.
“Having Maikel there behind my narcolepsy, is like having another person deal with it along the way.
“I will try and do everything that I can to overcome every aspect of narcolepsy that hits me, because I’ve got it, but it doesn’t have me.”