Learning How it Feels to Sleep
As a person with narcolepsy, I’ve been sleeping a lot of my life away ever since I was 13. No one who knew me would ever doubt my ability to fall asleep. I was doing it in plain sight at home, at school, on the bus, at the park... Basically every location I’d ever been.
However, it was over a decade later that I realised a weird phenomenon: in gaining my narcolepsy symptoms, I had actually lost my knowledge of what real sleep felt like.
For me, this began in my teen years. I would often spend my nights with intensely vivid dreams that had me half-convinced I was being possessed! This is because people with narcolepsy experience a much larger proportion of REM sleep than the average person.
What is REM sleep?
REM sleep is the stage of sleep during which we do most of our dreaming, but it is also the least restful stage. In fact, our brains can actually be even more active in this state than when we are fully awake! This is a big contributor to the constant sense of sleepiness that people with narcolepsy face - even if we slept all day, we wouldn’t feel rested.
Living without true rest
However, as a teenager without a diagnosis, I didn’t realise anything was out of the ordinary. I considered that my overactive dreaming was just a weird thing that happened to certain people. I didn’t even bother to bring it up to anyone.
As time went on, my nightly sleep only got worse. I would lie in bed tossing and turning from sundown to sunrise, aware of every single moment that ticked by. The idea of my brain actually turning off and giving me a break from the nightmares and anxiety spirals wasn’t something I expected to happen anymore, it was all I knew.
Even once I was diagnosed and started on treatment, the only medications that were available in Australia were designed to keep us awake for a few hours at a time. They didn’t solve the problem of our deep ache for restful sleep. Luckily, the stimulants helped somewhat, but they didn’t scratch the surface of my real issues.
Hope for relief
Years went by like this until one day I heard the exciting news: Xyrem was finally made legal to obtain in Australia. It was a tough process, but with the help of my family, I eventually got my prescription and my first ever bottle.
My first night on Xyrem was a highly anticipated event. I was suddenly quite nervous about the whole thing. It was scary to take a medication that basically knocks you out for hours at a time. Not to mention that the list of potential side effects is more than a little intimidating.
Worst of all, I was deeply terrified that I would be one of the few who can’t tolerate it, and my last hope for relief would blow up in smoke. I wasn’t sure I could handle that type of disappointment.
A novel experience: true sleep
The morning after my first dose, my dad was eager to hear about my experience. To be honest, I wasn’t quite sure how I felt. In a weird way I felt a bit… cheated? As if I somehow hadn’t slept at all. I felt like I’d gone to bed at night, and then suddenly it was the next day. When did the sleeping happen? It was like having part of my memory suddenly deleted.
It wasn’t until a few days later that I came to realise what was happening. I had become so distanced from the experience of getting normal sleep, where you spend most of it completely unconscious, that I didn’t even realise that this was what sleep was meant to feel like!
I had spent so many years being torturously mindful of every single hour, minute, and second. Having the time slip by without my awareness was a truly novel experience.
Getting used to "normal"
I’ve been on Xyrem for a few years now, and I have to admit I’ve started to take my “real sleep” for granted. I’ll take my dose, close my eyes, and let the hours fly past as if they never even happened. I’m no longer confused when the clock says 2 a.m., and then seemingly one minute later it’s 5.
However, occasionally I'll take a moment to think back to those nights spent trapped in my own mind, unable to switch off. I thank my lucky stars for the medication that has now changed my sleep, and my life, for the better.
Did you lose the knowledge of what real sleep feels like? Did you get it back? Share with us in the comments below.
Do you feel that your doctor understands narcolepsy?