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.
When I recovered, I looked up what had happened on the internet and this eventually led me to narcolepsy and cataplexy. I found a story that tallied so closely to my own that I might as well have written it. I printed it off and took it to my doctor. By then, I’d had further attacks, at work and in the shower. My GP referred me immediately to a sleep specialist. The rest is history, but I still cannot believe that it took more than 20 years of my life to get there.
I’d spent the whole of my childhood falling asleep, but it was assumed that my sleepiness and difficult behaviour were down to attention deficit hyperactivity disorder. I was always getting into trouble at school. I could never pay attention. I didn’t learn a word in French or Spanish. I tried very hard to listen, but always fell way behind in class. I could definitely have had more support and if it hadn’t been for one or two teachers and my head-of-year, I doubt I would have made it through secondary school at all.
I’d spent the whole of my childhood falling asleep, but it was assumed that my sleepiness and difficult behaviour were down to attention deficit hyperactivity disorder.
Since being diagnosed with narcolepsy and cataplexy in 2014, life has been extraordinarily tough. I had been looking at preparing for university but the realisation that I had an incurable disability made me doubt myself. The diagnosis also caused me to put on hold my plans to move to Newcastle Upon Tyne, a fantastic city I’ve been obsessed since I was a young boy owing to my unconditional love of the city’s football team Newcastle United.
Narcolepsy UK is an outstanding charity that has played a vital role in my life over the last few years. I love interacting with people with narcolepsy online. It is a massive sense of relief to know I am not alone. Narcolepsy and cataplexy are debilitating and can be very isolating a times. It’s a battle to make ends meet and I would love to live in a world where employers were more accepting of people with disabilities and more understanding of narcolepsy. Getting benefits has been sheer torture. The assessments appear to be geared towards rejection. My first application caused me relentless and unnecessary stress and anxiety and it failed. I am now reapplying again, this time with help from Narcolepsy UK. They are fantastic people with hearts of gold.
This post is part of Narcolepsy UK’s #NarcolepsyStories project, where people with narcolepsy write frankly about what it’s like to live with this debilitating disability.
Narcolepsy is a spectrum disorder that affects everyone differently. However, people with narcolepsy will always find they have a lot in common, sharing their experience of the difficulty in securing a diagnosis, the years it takes to find a suite of medications that helps combat symptoms, the effect that extreme sleepiness can have on education, work and relationships and impact that cataplexy can have on confidence.
It is our hope at Narcolepsy UK that the #NarcolepsyStories project will contribute to our vision as set out in the #NarcolepsyUKCharter to provide the respect, care and support that people living with narcolepsy and their carers deserve.
How can you help?
- Spread the word by sharing these stories on your social media channels, using the hashtag #NarcolepsyStories.
- Put your signature to the #NarcolepsyUKCharter.
- Make a donation to Narcolepsy UK.
- Contribute your own story to the project by sending an email to stories@narcolepsy.org.uk.