Docs thought I was lazy… but I had a rare form of narcolepsy

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Caley, 27, was sick of people thinking she was lazy. She lacked energy, couldn’t wake up in the morning, and falls asleep whenever she’s happy or sad. So why did docs ignoring her pleas for help and fail to diagnose narcolepsy?

SellusYourStory.com is part of the UK’s largest independent press agency and we helped Caley secure an exclusive deal for telling her narcolepsy story.  We help people share their stories with national magazines and newspapers for the highest fees possible.  There is no obligation and you stay in control of your story all the way. Just fill out the form on this page to tell us a little about your story; we’ll get back to you to let you know what it’s worth.


 

As I woke from the comfort of my bed, I knew that in just hours, if not minutes I would be off to sleep again.

Caley, 27, with daughter Olivia.

Caley, 27, with daughter Olivia.

“Caley, are you up?” My mum, Caroline, 40, called from downstairs.

“Yes, I’m up,” I shouted down with a croaky throat.

“Make sure you don’t fall back to sleep madam, you have to be in work in an hour,” she yelled up.

From the age of 13, when I first started secondary school, I had suffered with a rare form of narcolepsy. I’d come home from school and sleep until I had to get up the next day. I was restless, lifeless and lacked the energy a 13 year old girl should have had.

“How did you get on today?” mum asked as I walked through the door.

“Tired,” I replied. I answered most questions this way.

“How many times did you fall asleep today?” she would ask like clockwork.

“Just the once today, thankfully,” I replied half asleep. I took myself off upstairs to bed, where I would stay until the morning.

When I suffer a sleep attack, I zone out and go into an almost zen-like state. I can’t listen to anything or anyone if they’re talking to me, and if someone called my name I wouldn’t be able to snap out of the daze, not until my body was good and ready.

It’s bad enough when I’m tired and miserable, but when I’m happy, or if someone or something makes me laugh, my muscles seize up and I slip into a coma-like state. I’m not conscious to the world, all because I was so happy.

I can’t even watch a comedy on telly, or listen to a sad song – I just black out.

Caley, 27, outside the Sleep Disorder Centre at Queen Victoria Hospital in East Grinstead.

Caley outside the Sleep Disorder Centre in East Grinstead.

During school the teachers thought I was lazy and so did my parents. It took 14 years and the birth of my daughter, Olivia, one, to get diagnosed with the condition.

I have lost countless jobs because of my narcolepsy, failed exams and even fallen asleep in the most inappropriate of places, such as at weddings and school assemblies.

Each time I visited the doctors they’d give me the same shrug of the shoulders they always did.

“Sorry, Caley – we just can’t seem to figure out what’s wrong with you.”

Every time I’m overcome with a strong emotion, if I find something really funny or I am really angry my muscles will seize up, I will start talking gibberish and collapse.

It used to be really embarrassing at school if I got nervous or began laughing uncontrollably that was the end for me. I would sometimes fall over and other times just fall asleep at my desk or when I was sitting down with my friends.

I wasn’t diagnosed with my sleeping condition until I landed a job at a sleep clinic, at The Queen Elizabeth Hospital.
After investigations from my colleagues, the doctor finally told me I was narcoleptic.

He explained: “There are two-types of narcoleptic, type one is a sleep disorder where you will physically fall asleep while doing tasks, and type two means is cataplexy where your body will go into a trance, but you, Caley, have them both”.

Clinical Director, Dr Peter Venn with Caley.

Clinical Director, Dr Peter Venn with Caley

Narcolepsy type 1 is sleep disorder and cataplexy and narcolepsy type 2 is just sleep disorder on its own.

My world didn’t fall apart, I was actually really happy with what the doctors told me. The reason behind all those years of sleeping and being ‘lazy’ was due to narcolepsy.

“Thanks, doc! I’m thrilled,” I replied.

He looked at me baffled.

Caley was “ignored” by the system until 26.

Caley was “ignored” by the system.

Now my condition has been officially diagnosed I can finally get on with my life.

I’m now a sleep co-coordinator at the Sleep Centre so I’m able to help other people suffering from the same condition.

I’m on the right medication I feel so much better and I have been able to start making progress in my life.

But even the medication only cures the sleeping side of things – I still have to deal with zoning out when I’m happy on my own.

 


We helped Caley sell her story exclusively to Take a Break Magazine, who outbid rival magazines for the rights to print Caley’s story.  If you would like us to auction your story to the highest bidding magazine, get in touch using the story valuation form on this page.

Our service is free and won’t cost you a penny.  We guarantee to secure you the highest fee possible.  There is no obligation when you fill out the story valuation form – everything you send us is completely confidential until you tell us otherwise.

For more information you can read our Sell My Story page, which explains the process of selling your story in more detail, or you can contact us here.

 

Take a Break, June 2016, Health, Stacey

 

 

Author: Stacey Byles
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