words: Katie Antoniou
photo: Aloha Bonser Shaw
In the 20 years I’ve had narcolepsy, I’ve tried everything you can imagine to stay awake. Caffeine, prescription drugs, acupuncture; you name it, I’ve tried it.
But when people talk about awakenings, it’s what my mother said to me soon after I was diagnosed that comes to mind.
“We’re not going to let this change your life.”
As a frightened 14 year old, this was probably exactly what I needed to hear. But, over the coming years, I would experience a gradual awakening; a realisation that actually, I would never really be the same again.
The first symptom I experienced was extreme sleepiness. I had trouble getting up in the mornings, found myself nodding off in class and fell asleep the second I got in a car. But it wasn’t until I started exhibiting symptoms of cataplexy, the sister illness most narcoleptics also suffer from, that my parents became really worried. Cataplexy involves your muscles going into a state of sleep whenever you feel any strong emotion – prime triggers are laughter, crying or any real adrenaline rush. I started to feel my legs give way beneath me whenever I found something funny; sometimes it was only so bad that I’d get double vision, or wouldn’t be able to hold my head up; other times I’d hit the floor and it would look like I’d fallen asleep or fainted. I was, however, still completely awake and able to hear everything that was going on, but unable to move a muscle. It’s kind of like sleep paralysis, when you wake up unable to move, which I also began to experience, along with horrific night terrors and waking hallucinations. In a way I was lucky because my symptoms were so severe that I was diagnosed almost immediately – many narcoleptics go years without treatment, often being misdiagnosed with ME, iron deficiencies or simply labelled lazy.
At first I was told there was medication that would treat my illness and everything should get back to normal. However, over the coming months and years I began to realise it wasn’t quite that simple. The drugs definitely improved my symptoms, but my life was a far cry from what it once was and my teenage years were very difficult – sleeping through my GCSEs and only slightly better A Levels at a more understanding school that let me nap in the medical centre during free periods. What was harder to control was the cataplexy attacks, which were still triggered largely by laughter and nerves. I went from being an outgoing joker, a keen actress and member of my school debating team to a shell of my former self. I could no longer play any competitive sport, and this lack of exercise led to extreme weight gain. I stopped taking leadership positions in anything really, and just struggled to get by, delivering the bare minimum in terms of academic output. My dreams of becoming an actress were no longer viable – for a while, I found it hard to imagine how I’d ever even hold down a job, or have a family of my own.
Luckily, a few things changed when I was around 19. A new drug arrived in the UK from the US which worked much better. I also saw a cranial osteopath which really helped my cataplexy. I went to university, which was wonderful. For the first time in ages, I didn’t feel like an outsider. Yes, I still fell asleep in lectures, but I was hardly ever the only one. Able to sleep in late, take naps whenever I needed them and work at night meant a student’s schedule suited me perfectly. Little did I know this would predict my career as a freelance writer. Before that though, came a series of internships, essential for this industry and highly competitive, where I had to hide my condition. I napped everyday on the floor of a toilet cubicle during lunch breaks at one particular women’s glossy HQ. After a few years of complete exhaustion – constantly falling asleep in meetings or at my computer – I realised that a 9 to 5 couldn’t work for me.
I took a leap of faith and went freelance. That way, I could nap before scheduled meetings with clients or interviewees. I could work remotely, able to sleep when I needed to at home and still deliver work on time, so that editors got to know my work as a writer before they even found out about my condition. It’s a lot easier to get people to take you seriously if they’ve never seen you slumped over at your desk or nodding off during a meeting.
My condition has also improved as I’ve got older. How much of this is just me learning to manage it better and how much is my body actually changing, I can’t be sure, but whatever it is, three years ago I was brave enough to try coming off my medication with a view to starting a family. I’d tried coming off my pills many times before, but the hallucinations and night terrors had always come back within days. This time, they didn’t.
I was lucky enough to conceive very quickly, and as soon as the pregnancy hormones kicked in, most of my remaining symptoms dissipated. After my daughter was born, I kept those hormones going by breastfeeding until she was just over a year, but even when I stopped, fearful that my cataplexy would come back with a vengeance, I was pleasantly surprised to find how mild my symptoms were. Having said that, I’m still experiencing the odd ‘awakening.’
Narcoleptics typically have very disturbed nights – sleeping for only three or four hours at at time before waking. So, in a way, I was ideally prepared for motherhood. My daughter is nearly two now and still has a lunchtime nap; the second she’s down, I’m in bed, napping too. I still couldn’t get through the day without a nap, which means that as my friends are starting to plan their second child, I’m coming to terms with the fact that this is probably it for me, that I don’t think I can manage more than one.
Even now, when I think of all the years I’ve had to come to terms with how this illness has changed my life, I’m still surprised by the odd realisation that I’m never going to be the person my 13-year-old self imagined I’d be. From simple things like not being able to drive; (much more of a nuisance now I’m a mother and no longer live in London), to my lack of ambition, which I’ve only really acknowledged in recent years. I used to want fame, success, wealth; the whole package. But what a life changing medical condition will teach you is, you can do without all of that. I’ve been incredibly lucky to be able to achieve what I have, largely thanks to the support of my parents when I was younger and my husband later in life. And as I see my fellow mothers planning their growing families or my former colleagues getting book deals, it may be hard not to feel at all envious, but I’m mostly just grateful for how my life has turned out and proud that I’m still here, still staying awake.
Katie Antoniou is a freelance writer currently living in California, connect with her on twitter @katieantoniou
There are more stories of Awakening in Oh Comely issue 36, out 13 April.