'I'm scared to go to sleep because I might not wake up for weeks on end'

A nurse who suffers from ‘sleeping beauty syndrome’ has revealed how the disorder has impacted her life, causing her to sleep through holidays, gigs, and even her own birthday party.

Bella Andreou has a rare condition where she sleeps for more than 20 hours a day and becomes a ‘zombie’ for the duration of the sleeping episodes.

The 24-year-old only received her official diagnosis of Kleine-Levin Syndrome (KLS) – also known as sleeping beauty syndrome or familial hibernation syndrome – in September this year, despite having countless episodes lasting weeks at a time from the age of 17.

The nurse, from Newcastle upon Tyne, claims to have lost nearly a year of her life to KLS, missing events like New Year’s Eve as she was fast asleep. She also suffered from a bout while supposed to be a bridesmaid at her friend’s wedding.

Bella first experienced a sleeping episode in 2016 after getting drunk for the first time at an A Level results party, which sent her into a 10-day-long period of brain fog and slumber, which she initially thought was just a hangover.

Over the coming years, however, the same thing happened around every four weeks, with each stretch of fatigue lasting between seven and 10 days.

Bella, originally from Newcastle but now living in Devon, explained: ‘For a few months I was living with the fear that I was going mentally insane, thinking somebody was going to lock me up. I knew something was wrong with me – my parents described it as “the lights are on but nobody’s home”.

‘I’m a very independent person. I’m very bubbly and outgoing, but when an episode hits I become the complete opposite. I become very childlike. I talk like a baby and I’m needy.

‘I’m very dazed. I can’t function because it’s like I’m in a dream. It’s just a dream that you don’t really wake up from.

‘It’s anything but sleeping beauty, it’s more like a nightmare; you know when you have a nightmare where you fall off a cliff and then you can wake yourself up. Well for me that nightmare is constant for 10 days.’

When she initially went to her GP about the symptoms, Bella claims she was told it was ‘behavioural’ and that she was ‘just doing it for attention.’

‘My parents would have to argue and say, “This is not Bella.” Because that wasn’t me,’ she said.

‘I had never had any mental health issues before. And for them to just say it was behavioural was really hard because I wasn’t that sort of attention-seeking person.’

Doctors also thought Bella’s symptoms could be a reaction to the contraceptive pill, but months of scans and tests to rule out tumours, cancers and epilepsy led to an unofficial diagnosis of KLS by a neurologist in Newcastle.

Bella now knows her condition can be triggered by alcohol, stress, and her hormones, which she says is why her first episode occurred the morning of her first ever hangover.

Recalling this, she said: ‘My parents were away at the time but they then came home and saw me and thought I’d been spiked, just because of how severe the symptoms seemed.

‘I never got drunk again to the same degree as I did. I’d go out with my friends but I would always be the weird friend who couldn’t drink.

‘It was a very weird time because I lost a lot of friends. They didn’t understand it and they thought I was just being weird. It was a very scary chapter – the fear of the unknown.’

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Bella says she was ill ‘all the time’ while sitting her A Levels, which she completed over three years, and claims KLS often disrupted her studies throughout her nursing degree at Northumbria University.

Yet by the time she first messaged her now-fiancé Meg Stone, 25, on Instagram early last year, she hadn’t had any sleeping episodes in two years.

The pair spent six months dating long-distance before Bella made the move from Newcastle to Devon to live with Meg’s family, but the stress of the move sparked a 10-day-long slumber last August – the first of three episodes that Meg witnessed first-hand.

Meg, an engineer from Barnstaple, Devon, says she will sometimes have to take time off work to become Bella’s full-time caregiver – waking her up periodically to give her water and snacks, such as oranges and crisps.

She said: ‘I just miss her when she’s in an episode. It’s a weird situation because I miss her yet she’s right there, but she’s just not.

‘She’s like a ghost. She doesn’t really know what’s going on. Her eyes are open but you can see straight through them.

‘As soon as she’s out of the episode she feels very guilty because she says I don’t deserve to be in a relationship where she’s ill. It makes me feel upset because I don’t ever want her to feel like that. I reassure her all the time that I don’t care if a plan has to be cancelled because I’d rather be with her and make sure she’s okay.’

Bella says she feels her and Meg are ‘robbed of time’ by KLS, but having her fiancé there to support her has brought the couple closer, and that they’re ‘best mates’ who ‘do everything together’.

As a result of the disorder – including the fact one of the only ways she can come out of an episode is through a night of insomnia – she has a number of worries around sleep.

‘I really struggle with bedtime and going to sleep because of the fear of whether I’m going to wake up tomorrow,’ said Bella.

‘Sleep for me is a huge issue. I’m only recently out of an episode so my anxiety is more heightened at the moment. I’m having to sleep with the light on.’

Meg reached a breaking point when looking after Bella in her latest bout of KLS three weeks ago, so posted a video to TikTok to help raise awareness and appeal for help.

She said: ‘It was almost a cry for help. I had taken her to A&E and they would just look at us as if we’re stupid – as if there’s nothing wrong with her. No one had a clue about KLS and it was ridiculous.

‘KLS can happen in an instant and all of a sudden your life just changes – which is what happened with Bella. It was just completely out of the blue.’

Bella added: ‘I just wish people would understand and not make jokes about me sleeping all day. I wish I did just sleep all day and that was it.

‘Especially because the lighter my episodes become – in regards to the sleeping aspect – the more of the other symptoms I get, like the childlike behaviour, the anxiety, the fog, the insomnia. These are the symptoms I hate.

‘I’d far rather have the deeper episodes because I’m asleep and I don’t know what’s going on.’

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