The annual conference of Narcolepsy UK is, without question, my favourite weekend of the year. On any normal day, I spend most of my time wishing I didn’t have narcolepsy, a chronic, incurable neurological disorder that destroys healthy sleep. But for 48 hours a year, I find myself in the discombobulating position of being happy that I have narcolepsy.
Amidst those who understand life with narcolepsy, we share stories of the strange places we fallen asleep – at rock concerts, in night-clubs next to the speaker, in the tattoo parlour, whilst walking the dog and even during a scuba dive. We tell tales of overshooting our station and reaching the end-of-the line. We laugh, an activity that can trigger a loss of muscle tone known as cataplexy. In the real world, a sudden collapse in response to a strong emotion can be a stressful and sometimes dangerous experience. In the company of friends cognisant of the silly jokes most likely to provoke an attack, the burden of a life with narcolepsy recedes for a moment.
For most of the 25 years I have lived with narcolepsy, I am embarrassed to admit that I paid scant attention to the importance of sleep. I had resigned myself to dysfunctional nights so shot through with abundant awakenings, paralyses and hallucinations that they were little more than one long nightmare. A couple of years ago, however, I immersed myself in the science of sleep, interviewing hundreds of people with narcolepsy and other sleep disorders, visiting scores of sleep researchers and clinicians and reading up on reams of academic papers for a book I was writing.
I did not, for a moment, imagine that this project would improve my own sleep. Narcolepsy, after all, is caused by the irreversible loss of a microscopic cluster of rather important neurons at the centre of the brain. But the simple act of educating myself, learning about good sleep and the myriad ways it can turn bad, made me appreciate the very many simple ways to improve sleep and therefore health. Some of them even work on me.
Step 1. Work out if you might be living with a sleep disorder
These are much more common than most people assume. In pole position is chronic insomnia, defined as sleeplessness on at least three nights a week for at least three months. This affects some 10% of the general population at any one time. There is sleep apnea, where breathing stops over and over during the night, disrupting the architecture of sleep and placing untold stress on the heart. Restless legs syndrome results from a distressing sensation in the limbs that can only be tamed by movement, with devastating consequences for sleep. This is sometimes described as “the most common disorder that you have never heard of”. There are scores of other sleep disorders, like circadian sleep disorders (where the body clock runs out of synch with the sun), REM sleep behaviour disorder (where you thrash out your dreams) and disturbing parasomnias like night terrors, sleep paralysis and sleep walking. As sleep is an everyday occurrence, there are many people who accept sleep disorders as if they were a normal part of every day rather than the serious risk they pose to mental, physical and psychological health.
Step 2. Sort out your sleep hygiene
There are many things that we all do every day without thinking that are damaging for sleep. Be wary of overstimulation. In the human body, caffeine has a half-life of around four hours, which means that one-eighth of the caffeine from a cup of coffee necked at breakfast will still be zinging around the bloodstream at night. Nicotine is cleared from the blood more quickly, but there’s a risk that as the levels subside the brain wakes up seeking another fix. Though alcohol is a depressant and can help us get to sleep, the withdrawal that is starting to occur in the middle of the night tends to disturb sleep in the early hours. What we eat, how much of it and at what time is also important because these signals help set the body clock. Too much noise, such as snoring or a noisy street, can disturb, particularly when we are in the lightest stages of sleep. Inve in a pair of quality ear plugs.
Step 3. Pay more attention to light
The human brain (like that of other animals) is acutely sensitive to the comings and goings of the sun. From an evolutionary perspective, this makes perfect sense. Light and darkness are of such importance for survival that there has been strong selection to pay attention to these cues. The light that strikes the retina is wired to the visual cortex, but the optic nerve also carries signals to a small region in the centre of the brain that relays the message to every cell in the body, a biological clock that informs our brains when to wake and when to sleep. We need to stick to a routine, with the same wake up time from one day to the next. Forgoing the opportunity to sleep that a lie-in offers might sound like strange advice, but a clear routine that the brain can cue into is likely to result in sleep of consistently good quality. We need to seek out as much natural light as possible as this will help the body clock to keep time. But with our increasingly urban, artificially illuminated lives, there is a danger that we fall out of synch with the sun, with knock-on consequences for sleep. As our brains also pay particular attention to the bluish hues at dawn and dusk, we should avoid excessive exposure to mobile screens (where the blues are particularly bountiful) after the sun has set.
Step 4. Breathe
Sleep apnea is disrupts sleep because the lack of oxygen brings on a physiological panic that results in arousal. So anything we can do to maximise access to oxygen is likely to minimise the chances of on oxygen crisis. For a start, stop smoking. If you snore, find ways to stop. Give the lungs a deep-breathing workout routinely during the day and before bedtime to increase lung capacity and the surface area for gaseous exchange. If your nose is blocked, make judicious use of decongestants.
All of these steps, and more, have led me to be far more mindful of my sleep and, in spite of the neurological damage that underlies my narcolepsy, I now sleep far better than I have done for decades. Rather than seeing wakefulness as the raison d’être and sleep and an inconvenient afterthought, I now see the two states as equal partners in a shared evolutionary enterprise. It is simply not possible to have productive wakefulness without productive sleep and if we want our brains to operate at their optimum when we are awake, it pays to put the work in on our sleep.
This article was originally published in perdizmagazine.com