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We Sleep More Than We're Awake

2020 was a challenging year. It felt like the whole world was a type 1 narcoleptic off their medication: out of control, unpredictable, and staying inside for their protection.

COVID-19 put the world in a timeout – cancelling travel, events, meetups, and conferences – effectively putting a stop to the big plans in place for Narcolepsy UK annual conference.

This was disappointing, so we decided we needed to represent the UK for World Narcolepsy Day to make up for the loss we were feeling. The volunteers took turns hosting Zoom meetups every day to check in on the community to make sure everyone was coping with the pandemic.

What is World Narcolepsy Day?

World Narcolepsy Day takes place annually on the 22nd of September. With 2020’s constant theme of disruption, changes had to be made about how to raise awareness.

In preparation for this day, a group of volunteers from the Narcolepsy UK charity decided to raise awareness for the whole month of September.

Raising narcolepsy awareness

A friend of the charity and I made some narcoleptic-themed graphic designs for t-shirts, badges, and tote bags. They were sold on Facebook and eBay, and half the profits were donated to the Narcolepsy UK charity.

I also decided to write a song to raise awareness for the day. I tried using different tunes of pop songs by changing the words, but nothing seemed to fit. Then I remembered that as kids growing up in church, we used to sing short choruses. They are always easy to remember.

My song about narcolepsy

I tried a few of them, and the one that stuck was "Yes, Jesus loves me."  At first, I was unsure if it was OK to use it as I did not want to offend, but as it worked so well, I did.

So this is my song about narcolepsy. It is meant to be punchy, humorous, and informative. If you know the tune, please sing along.

Verse 1
Narcolepsy is a pain
Insomnia and weight gain
Fighting daily to stay alert
Fatigue tiredness my body hurts

Chorus
Nar-co-lep-sy, Nar-co-lep-sy, Nar-co-lep-sy
We sleep more than we're awake

Verse 2
Cataplexy what a chore
Laughing gets me on the floor
Swaying, walking down the street
No, I am not drunk, it's only three

Chorus
Nar-co-lep-sy, Nar-co-lep-sy, Nar-co-lep-sy
We sleep more than we're awake

Verse 3
Vivid dreams scary stuff
Mood swings, brain fog
I've had enough
Tossing turning trying to sleep
That's my life with Nar- co-lep-sy

Chorus
Nar-co-lep-sy, Nar-co-lep-sy, Nar-co-lep-sy
We sleep more than we're awake

Have you ever written a song about narcolepsy? Tell us more in the comments below!

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