#NarcolepsyStories

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#NarcolepsyStories

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In the run-up to World Narcolepsy Day 2020, Narcolepsy UK invited people with narcolepsy and their families to contribute their stories of what it's like to live with narcolepsy or with a person with narcolepsy.

Thank you to all those brave enough to share your experiences. Some of the stories make for hard reading and some are uplifting, but we hope that together they capture the spectrum nature of this disorder.

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#NarcolepsyStories: Louie Gray

Blog post
29 September 2020

I am 31. It is now very obvious to me that I have had narcolepsy and cataplexy my whole life. I am still waiting for a formal diagnosis. It sickens me to think of the adults – the parents, the teachers, the doctors – who watched a child unable to wake up, who looked on at a child who’d collapsed and did nothing but scream at him.

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#NarcolepsyStories: Lee Martin

Blog post
6 October 2020

Sleep is as vital as drinking water and people who sleep well simply cannot grasp just how devastating a sleep disorder like narcolepsy can be.

I've had narcolepsy for as long as I can remember. But I went undiagnosed for almost two decades. Then, in my 20s, I had a cataplexy attack for the first time, my muscles suddenly giving way during sex. This was one of the most frightening experiences of my life because I remained conscious but had no idea what was going on and thought I must be dying.

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#NarcolepsyStories: Nikita Tyler

Blog post
2 October 2020

I had turned 13 and over the summer holidays, I began sleeping in until the afternoon and taking naps for the rest of the day. I put it down to feeling a bit depressed because my best friend at the time had moved away. My mum put it down to me being a lazy teenager. By the time I went back to school in September, the urge to sleep was becoming more frequent and more intense. I remember my eyes starting to sting in a religious studies lesson and I just wanted to shut them. At home, after school, I’d sit down and be asleep at exactly the same moment.

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#NarcolepsyStories: Heather Murphy

Blog post
9 October 2020

One day I was a child who could get up at 6am and stay awake until late in the evening. The next I just couldn’t stay awake. About a year on, I experienced cataplexy quite suddenly. It was not gradual like the tiredness. I would collapse whenever I laughed or even just with the joy of seeing friends.

If a child came to you with seizure-like symptoms wouldn’t you take them a little more seriously?

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#NarcolepsyStories: Nicole Hirst

Blog post
22 September 2020

I was so young when I began to develop narcolepsy and cataplexy – just five – that I don’t remember much apart from the teachers telling me off for sleeping in class. At a meeting about my sleep, a teacher told my mum that I had slept through so much that I would not amount to much academically. I had some friends, but I couldn’t go to their houses as they were scared of having me over. I became a recluse. I cried a lot. I hated my narcolepsy. 

I wanted to show the teachers that they were wrong to write me off.

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#NarcolepsyStories: April Atkin

Blog post
18 September 2020

When I was at school, particularly in sixth form, I would take a nap everyday after school. I would really struggle to stay awake all day and would usually fall asleep in the car or on the bus on the way home. I always felt fatigued, something I and others often put down to ‘hormones’, staying up too late or my vegetarian diet. My sleepiness became my ’thing’, a defining feature. There are countless times when I fell asleep by accident when alone and I would wake several hours later.

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#NarcolepsyStories: Megan Wall

Blog post
15 September 2020

Nobody knew what was happening to me. I started to experience an array of symptoms such as excessive daytime sleepiness, frequent loss of muscle control in my legs, arms and neck as well as slurred speech. I visited hospitals all over the country seeing different specialists, including a thyroid specialist, an ME specialist and several sleep disorder specialists, with myasthenia gravis even being investigated. Eventually, eighteen months after the onset of symptoms, I was diagnosed with narcolepsy and cataplexy at the severe end of the spectrum.

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#NarcolepsyStories: Liam Gordon

Blog post
11 September 2020

When walking home after a full day at university, I began to notice my knees buckle for a split second and there was nothing I could do. In that moment, it felt as if my whole body was about to give way; then the next thing I knew I was completely fine. I had just started my fourth year studying chemical and process engineering, the workload was high and beginning to get the better of me. At home, I might try to watch a film, but would be overwhelmed by a need to sleep and be unconscious within the first five minutes.

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