The first answer that pops into my head, is it’s ME. I need coaching!
It might sound a little odd but one of the reasons for cooking up The Sleep Lab is that all these years of learning to live with narcolepsy, I have been in training as a sleep coach – coaching myself.
Sleep has basically been a big mystery that I have had to untangle.
Together, me (coach Liesel) and me (the desperate-for-help-with-my-sleep Liesel) have been working out strategies for managing my sleep. I think I have been pretty lucky. I have had support and access to education/knowledge, which has meant I have been able to slowly build systems that have helped me operate. At one level this try everything out approach has been an incredible source of learning, as I have personal experience of what can work and what doesn’t. Over time, I have been test-using my own systems, tweaking them, trying different ways, and then integrating these systems into routines. My own lived experience has helped me build up a number of excellent sleep/energy monitoring and managing methods. So thank you, narcolepsy!
I also think if some of the sleep knowledge I have now had been available to me earlier, it would have freed up my (limited) energy for how I live my life and spend my time. In other words, I would have benefited from a real live sleep coach.
So, The Sleep Lab is my attempt to do some untangling, some boosting and a bit of pushing (when needed) for you!
I want to save you the effort and the energy of navigating a lack of information, feeling sleep deprived or full of sleepiness, and then attempting to make good decisions about life – by yourself. And to clarify in case you were thinking “but I don’t have narcolepsy”, sleep coaching is not just for people with a sleep condition like narcolepsy. I like to think sleep coaching is for anyone and everyone who is willing to commit to the process of transformation.
So the question is, are you ready to untangle, get curious about small changes, and transform your sleep? I’m ready, whenever you are.
The ideal number of minutes for my afternoon naps is 15. I can also enjoy a 20 minute nap if I am feeling leisurely. But 15 is ideal. And usually I wake up refreshed but sometimes I have the strangest waking up experience.
It happens when I have fallen asleep – without knowing I have fallen asleep. I may have been about to have a wee nap on the couch, and had every intention of setting an alarm, but oops, took too long, and fell asleep mid said set alarm process.
So instead of a 15 minute nap (perfect!), it turns into an hour of wiped out dead sleep (yuck).
By dead sleep, I kinda just mean that. I just conk out. There’s being awake, and there’s just not. And in this space I am not even sure if I dream. It just goes to black and I don’t know I’m asleep until I’m awake. Even then, on waking, I don’t really understand I have been asleep.
Because when it’s been one of these totally dead sleep nap-times, I will often wake up and have no idea of my reality. So I’m awake eyes open but brain is definitely still snoozing.
What day is it? No idea.
Where am I? Nope, nothing.
Who am I? ❓️❓️❓️❓️
It’s like my body has been yanked back to awake land, and my brain is still swimming around in the dreamy dark, wondering what is dark? Why is dark? Am I dark? Does dark exist when I am not being dark too…?
Swimming in the dark, and trying to resurface.
Another way of explaining it is like your arm has gone numb and you can’t feel it at all (what arm? I don’t have an arm. Definitely can see it but definitely can’t feel it).
Then eventually you start to get a few funny sensations and then the feeling starts to flood back in. That’s kinda how the waking up from the oversleep dead sleep feels too. Only instead of your arm going numb, it’s your brain.
Hang on, I know where I am. I’m in a room. What room…? Hmm…could be some kind of living room, or, wait…it is a living room…yes! I know this room! It’s my living room. And today is a day. It’s a day that’s not a Tuesday…wait…got it! It’s a Wednesday!
It’s weird as the waking brain starts rippling and flexing, and the sleep brain slowly retreats again…back into it’s darkness.
I thought I would take a moment to think about why I started this whole sleep thing in the first place – as it’s been about a year since I got The Sleep Lab out of my head and started building it in the world.
Last year (September 2024) I gave a talk as part of the awareness raising that goes on for World Narcolepsy Day. I had been selected to speak after taking part in Rising Voices, a programme run by Project Sleep. The purpose of the programme was to become an educated advocate for awareness of sleep conditions. The programme facilitated and mentored you, as you constructed your ‘story’ of your own journey from diagnosis, awareness and management to what living with a sleep condition looks like for you today and into the future.
Anyway, I started writing my story, without knowing I had a story. I had never stopped to consider that what I was living with had some noteworthy moments. Or, that these moments had some tough bits. Or that I had been grappling with all kinds of things over the years, without acknowledging that narcolepsy might be playing a part in how I was feeling.
I thought I was all aware. I was not.
For example, I enrolled in a PhD programme – not the easiest or, let’s be honest, the smartest undertaking for anyone. It’s a frickin rollercoaster ride and a demanding course of study. It puts heavy demands on your time, your brain, your ability to manage a massive amount of information, and a deadline that usually means the money supporting you has run out. It taxes you mentally but also physically, and emotionally it can really mess with you too. (See, doing a PhD is not the smartest idea out there).
But guess what this human right here was thinking? That’s right. I can do it!
Not only I can do it – but – wait for it, I can do it at the same level, with the same expectations, pumping out the same amount of work, as any other person (without narcolepsy). Because I’m strong and resilient and tough, right?
Except, guess what, I have narcolepsy. Oops, little piece of well known info I just conveniently keep leaving out of the equation. So it DOESN’T MATTER how strong and resilient I might think I am, my sleep condition still exists. Still has all the power over whether my eyes can stay open long enough to type this sentenc…zzzzzzzzzzzzzzzzzzz…
Anyway, there were many examples just like the PhD one dotted throughout my tough, resilient little life. However, when I signed up to participate in the Rising Voices programme, I had no idea this was going to be a significant experience for me – both cathartic and serendipitous. Or that a sleep lab would be born in its wake…
The very first session in the programme got started, and one of the first things we did was go around the room and introduce ourselves. As people were talking, it hit me. I had never, ever been in a room (virtual or physical) with a whole group of people who also had narcolepsy. I had never had the experience of being around a group of people who “got it.” It was really powerful. I hadn’t been prepared for how that would make me feel. I had read something in the programme introductory stuff that said this might bring up emotions for people. Yeah, well that was something of an understatement. I had no idea I would have these deep feeeeeeelings continue to wash over me while I participated in the programme.
Have you ever had an experience where you click with something – or someone? You all of a sudden realise this connection was missing in your life, but you didn’t know it wasn’t there until it was. This was that. There was something amazing about being around other people who were also living this funny, interrupted, dreamy, disappearing life. A sleepy life that is in many ways invisible to most people.
It wasn’t just me! I wasn’t alone in this stuff! I wasn’t the weird one trying to explain why I just collapsed to the floor in a heap or fell asleep at lunch, mid-chew. Other people did this stuff too.
While I was working on my story over the next few weeks, my partner would come into the room to find me crying over other people’s stories or my own memories of living with narcolepsy and trying to piece things together into some kind of story. It was weird and unexpected at the time but reflecting on it, the flow of feelings were deeply freeing and cathartic. I had been given permission somehow to own my sleep baggage and truly accept that I had a sleep condition – surprise, not surprise.
It was also serendipitous. I had been trying to ignore my sleep condition all this time to live a “normal” life (see, look at me, all normal and asleep slumped mid-stairs at 10am. Nailing normal, for sure.) For years I had viewed narcolepsy as something preventing me to live in a meaningful way. It was a hindrance and an unwanted weight and something that ultimately stopped me from being me.
After presenting my story, I had this profound realisation that I had something to offer – and this something wasn’t in spite of narcolepsy, it was because of it.
Sleep colours just about every aspect of my life. I live and breathe this stuff. Instead of thinking of it as an affliction, perhaps it was a gift. What if my years of living and learning with narcolepsy, years where I had to develop ways to live a functioning and healthy life, to manage my sleep, and to test out the most effective ways to maintain energy, what if, if, if, it just might be valuable to other people too?
Imagine that!
And I did.
And well, hello! Thank you for being here with me as the journey continues.
