My name is Caitlin and I have narcolepsy.
It’s been nearly a week since I was diagnosed. I’ve been having what my mum delicately calls “funny turns” for a while, but it wasn’t until my dad and Andy convinced me that they weren’t normal that I went to the doctor.
The GP thought they might be seizures- this seems to be a bit of a catch-all term for unexplained funny turns- and referred me to a neurologist. The neurologist immediately ruled out seizures and epilepsy, which was a relief, but couldn’t work out what was actually going on. When I mentioned how I sleep-walk and have done for years, I saw a light bulb go off. He asked me other questions, like do I get sleep-paralysis? Yes, occasionally. Do I go weak at the knees under strong emotion? Yes, but doesn’t everyone? Am I excessively sleepy during the day? Well, yes but I’m probably just not sleeping enough.
Anyway, this all resulted in a diagnosis of narcolepsy. Narcolepsy is a neurological condition where the brain has trouble regulating the sleep-wake cycle. In other words, I don’t sleep properly and my brain likes napping. The “funny turns” turned out to be me micro-sleeping with my eyes open.
How is this going to affect my life? Well, it’s a bit of a lifestyle shift. There is medication, but I don’t really want medication. This is, most likely, for the rest of my life, and I don’t fancy taking pills till the end of my days if I can help it. So things that are important now:
- Regular bedtime. No more fannying about until 11pm, I am now in bed by half 10.
- No screens in the bedroom. I’m finding this one a little tricky, as I’m fond as reading the news first thing in the morning.
- An hour’s unwind time before bed. This I’m finding frustrating and tricky, but sort of nice. I’ve been working till 11pm on the dissertation and then hopping straight to bed, but I can’t do that anymore. I now switch the laptop off at half 9 and spend an hour pottering about or reading.
- Scheduled naps. I’ve started having 10 minute naps around lunchtime every day and I tell you, it’s making such a difference.
- Diet. Sugar and junk food are not my friends. Equally, my caffeine intake, which I previously used to keep myself awake, has to drop. Alcohol is also one to keep low, but I’m not really a drinker anyway.
- Exercise. I reckon I’ve been inadvertently helping myself with all this running. Anyway, it’s now pretty much imperative, although I will still run for the free t-shirt.
So there. Feel free to ask me any questions. I’ve been trying to get round my friends and tell them individually, but not with much success, hence the blog post. It’s a bit of a shift, but other people have it much worse than me.
So if I fall asleep on you, I’m not being rude, I’m narcoleptic.