Summer Sleep: Overheated and Exhausted

As I was growing up, I always had a bit of a weird chip on my shoulder about living in Australia. My mum grew up in England, and I sometimes felt like I had been born on the wrong side of the world.

I’m quite pale, vegetarian, never enjoyed sports like cricket or “footy” and, as I grew older, felt that Europe would probably be a better match for the cultural sophistication I aspired to. But my biggest problem, the one that still haunts me years later, is the fact that I can’t stand the heat of an Australian summer.

Too hot to handle

I always struggled in the heat, long before I started experiencing the symptoms of narcolepsy. My inability to live comfortably in temperatures above 25°C has only become more apparent since then. But initially, it wasn’t so easy to tell, especially before I had medication to help manage my symptoms.

Back then, every day was a roll of the dice in terms of wakefulness. However, as I started to gain some control over my symptoms, and kept a closer eye on the ebbs and flows of my sleepiness, I noticed that the summer always made it harder to function.

Sleepy summer struggles

In a house with no air conditioning, my already fractured sleep became almost non-existent as the temperatures rose each year. As my nighttime sleep deteriorated, my sleep attacks during the day ramped up noticeably.

On top of this, I felt a general blanket of lethargy draped over me at all times. It sapped out any small amount of energy I had, leaving me unable to do literally anything.

Melting muscles

The other equally difficult aspect of this was my cataplexy. In the heat, my usually isolated episodes suddenly became almost constant. It was as if I had a low level of cataplexy affecting my mind at all times. Never enough to make me collapse. Still enough that it sometimes took all my mental strength just to keep myself upright or walk across a room.

My level of tolerance to my usual triggers was also at an all-time low. The slightest hint of laughter or frustration and would send me straight to the floor with zero resistance. I spent a lot of time doubled over in awkward positions, leaning on furniture to support myself.

Trapped in my body

These were some of the times that I felt most at the mercy of my narcolepsy. I was constantly frustrated, feeling trapped in my malfunctioning body, unable to pull out of my half-asleep daze. I just wanted to be able to get up and do things like a regular person.

At times, it all felt like too much, and I’d get unbearably cranky or depressed. I'd sometimes take these feelings out on the people around me. It started to feel like I didn’t even want to exist in these circumstances.

Taking action and making change

After starting Xyrem and experiencing a huge improvement, I still noticed that things were generally harder over summer. I still feel a hint of dread when we hit the first day over 30°C each year. Unfortunately, the apartment block I live in is quite old (and while I love the high ceilings, I hate the lack of air conditioning!)

Last week, I decided to bite the bullet and bought a second-hand portable air conditioner. I haven’t had the need to use it yet, as the weather has been unusually cool so far. Luckily, the peace of mind I feel knowing I won’t get stuck in my heat-addled body has been well worth the investment.

Getting feedback and perspective

Thinking about the influence of temperature on my symptoms, I got curious about whether other people with narcolepsy might be affected. I posted an informal Instagram poll and got over 180 responses. An overwhelming 83 percent said that the temperature had an impact on their symptoms!

In addition, I asked about which temperature extreme affected them most strongly. 64 percent found heat to be the worst, with cold and equal effect both hitting approximately 18 percent. While I wouldn’t wish this inconvenience on anyone, it was validating to see that my experience was normal.

Heat: the common enemy

Because people with narcolepsy generally have a difficult time regulating temperature, it makes sense to me that these issues affect us more than the average person. So, the next time someone questions your need to cancel plans during a heatwave, remember that you’re not alone!

As I so often find with my narcolepsy struggles, if I compare myself to the general public, I can feel like I’m overreacting or simply being precious. However, when I learn more about my fellow people with narcolepsy, I can rest assured my experiences are real and that doing what I need to manage my symptoms is very justified!