nic77e

dealing with narcolepsy, wedding planning, a law degree and some new fitness goals…

So what?… I’m tired all the time too..

If you ever meet someone with narcolepsy, please don’t say things like “Oh I’m tired all the time too” or “How lucky for you to be able to fall asleep so easily” or “I’m just so tired I hardly slept at all, you wouldn’t understand”.

The thing is, we understand better than you will probably ever realise.

To get an idea of what it feels like, imagine yourself getting up at 3am on the last day of your holiday, you had a big night last night so you’re pretty zonked and could do with a few more hours sleep, why oh why did you book that cheap Ryan Air 5am departing flight?  Begrudgingly, you pack your suitcase and commence the hour journey to the airport, you fly home, you collect your bags, you deal with the taxi queue, or you sit on public transport for a while, you get in the door, you need to unpack, wash your clothes, pay your bills and go through your mail, your friends want to catch up and find out about your trip..  but you’re zonked right?  You just want to have a quick nap.. a few hours, you didn’t get enough sleep last night, you’ve been up since 3am, you’re exhausted.  But you have commitments.. you have to get your work clothes ready, you have to go shopping and sort out dinner, so you bumble through thinking if you can make it to 7pm that is a reasonable hour to go to bed… you try not to think about it.

Ok take that feeling, and times it by 3.  They say that someone without narcolepsy has to go for 3 days without sleep to feel the way that a person with narcolepsy feels every day.

It’s not just that we are tired, we are exhausted.  Our mind is constantly filled with ways that we could sneak in another nap, or how we could avoid having a microsleep in a public place.  We wonder if anyone would notice if we snuck into the office toilet and had a quick 10 minute nap in there.  We get up from our desks to splash water on our faces to keep ourselves awake.  We pinch ourselves in lectures and pace the floors of meeting rooms to stop us from nodding off.  We try not to drive very far because we are scared we won’t make it there. We avoid coffee, and alcohol because they make us more sleepy.  We avoid social situations at night because we don’t know how long we will last and would rather not show up at all than look like a total party pooper by having to leave early.  We can spend the whole weekend doing nothing but sleeping.  And sometimes while we are talking to our very closest friends at the end of the day, because our guard is down, we start to dream, and we don’t make any sense, so we talk total nonsense to you and you look at us like we are possessed or something..

I say “we” when really I mean “I”.  If there is one thing this experience has taught me, it is that everyone’s journey is different.  Narcolepsy manifests itself in so many different ways.  I have met people online who have it so much worse than me, and I am so grateful to have been provided with that perspective.  This blog is my journey, perhaps it resonates with your own, perhaps it doesn’t.

My aim here is to help raise awareness.

« Narcolepsy Shmarcolepsy


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