Life Post: Two Years of Narcolepsy

Two years ago this month, I was diagnosed with narcolepsy. My road to diagnosis wasn’t long (compared to other narcoleptic people) and my condition is on the milder side. But still, it’s changed my life and on my second diagnosis anniversary, I thought I’d share some things I’ve learnt along the way.

Giving blood is tricky

Who’d have thought it, eh? Turns out narcolepsy is on their list of conditions that you’re not supposed to donate if you have (see Transfusion Guidelines – Narcolepsy for more info). It’s because we can (in theory) fall asleep at any moment or have a cataplexy attack when they put the needle in. Cataplexy is loss of muscle control in the face of strong emotion, so clearly having that when someone is trying to squeeze blood out of you is a bit of a no-no.

There is a discretionary clause which allows you to donate if you’ve managed your condition for over a year and not had any attacks (which covers me) but it still requires a phone call to a doctor and an awful lot of sitting around. Seriously, it took 2 and a half hours for me to donate last time.

Napping at work is never not cool

I choose not to take medication (I explain why here: Narcolepsy FAQs) so I keep a fold out futon, a sleeping bag and a couple of pillows in the baby changing room at work for a quick napping break. It’s alright mostly, unless there’s been a really smelly baby in there, or someone is having a really personal conversation right outside the door. The latter happens a surprising amount, probably because people think it’s a deserted corridor, but it’s most definitely not.

Anyway, I get to nap at work medically, and it makes the world of difference. Andy says he can always tell when I’ve skipped a sleep break, which does happen because…

It’s tricky to schedule sleep breaks sometimes

If I’m on a training day, or there’s a long meeting on at work, or back to back meetings, or I need to catch a plane/train/hoverboat, the naps get skipped. I don’t know why I do it, because I know I’ll feel awful for the next couple of days, but there we go. Sleeping in public on my own is a big no (obviously!) but if Andy’s there, I can sleep anywhere. Literally anywhere: I’ve slept in front of the Pyramid stage at Glastonbury, in a brewery, on all sorts of public transport, in cafes.

Caffeine doesn’t help (much)

It’s a bit like Lord Voldemort and the unicorn blood. It’ll keep me awake, but the cost is high. I’m awake but nowhere near as alert as I could be. It’s marginally better than skipping a sleep altogether, so I suppose that’s why I do it. As a side note, caffeine has no impact on my ability to nap, which is quite handy.

But running helps a LOT

Almost as much as napping. Since I was diagnosed, I’ve run more and more, even joining a running club last year. I’ll never be fast or win anything, but the benefits I get from doing it mean that I don’t care. It helps me sleep at night, and to wake me up in the morning, and just generally being fitter is excellent for my brain. I dread getting ill or injured because it means I won’t be able to run and that’ll knock everything else.

We don’t really know what causes it

Some say swine flu, some say trauma, some say just one of those things. I wish there was more research into it, but hey.

People think they have sleep disorders too

So many people who I’ve told about my condition have gone, “you know, I think I might have that too!” Seriously, if you fit the symptoms, go and see a doctor. Someone I know has just been diagnosed with sleep apnoea after years of terrible sleep, and they went to their GP with a query.

If you’re just a bit tired, though, I have no sympathy. Go to bed earlier. Eat more spinach.

Anyway, I think that’s all I’ve learned over the past two years. My condition has got worse, but I’m used to managing it. So well, in fact, that I’m allowed to drive again! That’s something.

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