Narcolepsy is a Foggy Infinite Loop

It struck me today how to explain what the EDS (Excessive Daytime Sleepiness) part of Narcolepsy is like. I’ve had people say to me before, “well you had a nap a short while ago why are you still tired, it’s not right, you don’t see me doing it do you and I’m tired, so why can’t you stay awake like me?”.

Stuck in the Loop
EDS is like being stuck in a loop, and starting your day again every few hours. But to make it even harder to understand, in some situations it is possible to will myself awake, but this will always backfire on me as I’ll be extra sleepy. Unlike most people, I’m not getting proper REM sleep at night. My brain needs REM sleep and it will attempt to get it in the day … yeah. It’s like that, it’s not my fault. If I say to my brain, no you will not get your REM sleep while I’m shopping today, it will battle against me and it will win.

“Wake up > do stuff > go to sleep > wake up > do stuff > go to sleep while doing stuff > never really wake up”

Endless Shopping
Sometimes it feels like if I don’t battle on, I may not get to finish what I started. Like shopping for example. I’ve fallen asleep in Tesco before, by this I don’t mean in the cafe, I mean in an isle. The EDS works in partnership with sleep paralysis. You know how it works, you go to sleep, you dream but you don’t act out your dreams. That’s because a function of sleep is to freeze your body.

“What would happen if I was shopping, fell asleep, got taken to first aid, but then had to restart my shopping because it had been taken away? Would I actually finish shopping, or would I be trapped in Tesco in an infinite loop?”

My body freezes up, because my brain is asleep, it actually makes a lot of sense, this happens to you every night, it happens to me in Tesco. So I know I’m blocking the corn flake section and I can hear people asking me to move, but I cannot do this. I cannot move, it might seem odd, but I wouldn’t really bug you at night and ask you to move, because you are in an appropriate place, I am not. I’m not being rude, I’m just doing what every normal person does at night in their bed, but in the corn flake section instead.

If I got woken up, taken to first aid, would I actually ever get to finish my shopping, because it could happen again when I wake up?

“Narcolepsy is like a computer program that reboots every three hours or when something emotional happens. Same funk, different hour.”

Groundhog Hour, Nevermind Groundhog Day
Excessive Daytime Sleepiness isn’t specific to Narcolepsy, it’s a part of all sorts of conditions from Depression to ME and even Diabetes. EDS from a medical condition isn’t that persons fault, it’s just a symptom they have to manage with stimulant medication. Sometimes it can only be managed by going to sleep in the day, at the worst possible time. It won’t be “fixed” by going to sleep as the nap will only be refreshing for a few hours and the EDS then returns and the person starts the nap cycle again.

EDS from a medical cause is chronic, it won’t go away, EDS from a late night or because the baby woke you up, isn’t chronic and won’t last forever, but everyone has experienced EDS, most people can manage to stay awake. If it’s because of a medical condition, you can’t stay awake, you have to sleep, there and then, no matter what is going to happen. I’ll give you an example, I’ve fallen asleep while eating, yes sleep really is more important than eating.

“Sometimes it feels like if I don’t battle on, I may not get to finish what I started, every few hours the ‘go to sleep mode’ forces me to stop.”

Narcolepsy is like a computer program that reboots every three hours or when something emotional happens. Same funk, different hour. Wake up > do stuff > go to sleep > wake up > do stuff > go to sleep while doing stuff > never really wake up > fumble around in a fog > go to bed at night > never really sleep > do the same again tomorrow.

Big Night Out? I *Wish*!
So the next time you see someone sleeping, try not to give the typical “Woah you’ve had a big night out on the town I see” comment, because it might actually be a lot different to how it looks. I don’t wanna sleep in the cornflakes, I just have to sleep in the cornflakes sometimes, or on the pavement.

Posted on Tuesday, August 23rd, 2011