A narcoleptic beauty: A fairytale retelling

Once upon a time in the lush green valleys of S Wales lived an ordinary girl called Gwen.

Gwen lived happily in the two by two grey stone house with her mother, Amy and Pomeranian pooch, Princess. Her father had left the family home some years ago when Amy discovered him having an affair with his piano student in their marital bed. Everything was going fine until one day Amy noticed that her fourteen-year-old daughter kept nodding off.

“Wake up sleeping beauty!” Amy thrilled as she shook her daughter’s shoulder and brushed back her strawberry blonde curls behind her ear. Gwen’s eyes flicked open however her bright sapphire eyes were unfocused and dull. “What happened?” She asked groggily as she rubbed her eyes and sat up straighter in the leather armchair. Amy smiled, “You nodded off for a bit sweetheart, don’t you remember? Must be all that netball you play! Early night for you!” Amy ushered Gwen up the stairs and into her bedroom. Gwen felt as if everything her mum said was underwater and as if she couldn’t really focus, just on autopilot. Gwen yawned as she climbed into bed, snuggling under her duvet and purple velvet throw, nuzzling it against her cheek. She barely remembered her mum kissing her goodnight and flicking off the light switch, plunging her into the darkness. She didn’t tell her mum but this was not the first time she’d fallen asleep, it happened in science last week during a frog direction. No matter how early she went to bed it still happened. If she was being honest with herself she felt that something wasn’t right with her but afraid to say it out loud in case it came true. She didn’t have time to feel vulnerable because she soon fell into a deep sleep.

*

A few months later and the problem steadily grew worse. So much so that Amy had been called into seeing the schools’ welfare officers as Gwen’s marks had plummeted. “We’re just concerned.” The three women said softly as Amy sat in front of them. “Is anything happening at home?” Said Miss Hennessey, Gwen’s form tutor. This question made Amy burn in her seat, was she insinuating that she was a bad mother? “The doctors are investigating the cause and we’re taking vitamins as well as keeping a sleep journal, it’s most likely to be stress.” Amy shifted in her seat as she felt as if she was under scrutiny. The three women agreed that this was a good way forward but Amy could just see that they were condescending. In the meantime, Gwen was to give up her beloved netball.

This made matters worse as she seemed to sleep for hours and her speech began to slur as well as chronic headaches and confused state. “I don’t want to live any more mum!” Gwen sobbed in bed, making Amy feel slightly helpless.

A year later and things were still no better despite a new regime of supplements and diet changes. The doctors reviewed her sleep journal and decided to send her away to a sleep clinic for a week. Gwen hated the harsh lighting, the constant noise and the banging of doors swinging open and shut. The squeak of the nurses’ trainers irritated her as well as having to deal with a lumpy mattress, static producing sheets and hardly any privacy. She was even followed to the toilet by an aide in case she had a sleeping episode! The worst part was the lack of appetite due to the unappealing smells of bleach and plastic that seemed permanently seeped in every piece of furniture and curtain. She could deal with the rashes of the various monitors stuck to her but, the hardest part was being without her beloved Princess.

It was after a fainting spell that they diagnosed her with narcolepsy a condition where suffers have episodes of prolonged sleep throughout the day as well as cataplexy that caused her to collapse usual brought on by strong emotions such as excitement. Gwen felt relieved because now she could start treatment and get back to normal but was devastated again that although there was medication, there was no cure. She was stuck with this for life.

“Looks like we’re going to have to find a prince to break the spell!” Her dad said when he came to visit her in the hospital with his new girlfriend Lola who was six years older than Gwen. Gwen scowled at this and so did her mum earning him a dig in the ribs from Lola. She was cursed.

To make things worse she was on a children’s ward with noisy five-year-olds and grumpy pre-teens. The only way she found solace was starting a blog called ‘The Welsh Sleeping Beauty’ where she could rant and talk to other sufferers in the USA where 25% of people were affected but unable to afford the new experimental treatments. She loved her late night chats with Ryan who really understood what she was going through. That laptop was her source of hope and every day when she went home she signed up for every medical trial. She was in school part time and she was studying science for GCSE where one day she hoped to be able to find a breakthrough so that good may triumph over evil.

The moral to this tale is to not take anything for granted and sometimes you cannot prevent your fate, it can also be the making of you. Sometimes you have to make the best out of a bad situation.

Advertisements

Sunday Self Care Tips

Well, my back and pelvis are aching due to the cold weather, so I thought what a great time to share some self care tips!

  • Take a bubble bath
  • Light a scented candle and try some meditation.
  • Turn your devices for an hour
  • Put on your favourite movie
  • Drink eight glasses of water a day: hydrated skin is happy skin!
  • Do a crossword/word search or sudoko – to keep your brain active.
  • Read some positive affirmations
  • Create a positive playlist, read some of my music Monday posts for ideas.
  • Do a gentle workout
  • Eat healthily
  • Start a habit tracker/ bullet journal
  • Colouring
  • Read a book, plenty of recommendations on my blog!