#140 - The Lived Experience of Sleep Problems
This was my 24-hr routine in the final stages of my PhD:
7 AM - 9 AM = get up. get ready. go to Uni.
9 AM - 4 PM = work on PhD.
4 PM - 9 PM = go home. have dinner. with the fam. play with the kids and help put them to bed.
9 PM - 3 AM = work on PhD.
3 AM - 4 AM = try to fall asleep.
4 AM - 7 AM = sleep.
It’s ironic that I was sacrificing my sleep to do the pinnacle of qualifications on sleep. Added to that, on Fridays, I would work in an Insomnia Clinic helping others to improve their sleep.
The lack of sleep towards the end of my PhD wasn’t just behaviourally-driven (ie, my choice to push the boundaries of being awake) - but that 1 hour trying to fall asleep became out of my control.
Despite everything I learned and everything I knew, I began to lose control over my sleep.
The silver lining?
I remember a few times during my work in the Insomnia Clinic where I used a counselling technique known as ‘self-disclosure’.
Self-disclosure is when you tell the client something about your own life experiences.
It’s a technique that is used sparingly, as the client could feel that the therapist is taking up valuable therapy time.
But there were times when I would get a sense that the insomnia client I was seeing was feeling like their sleep was out of their control.
And so I experimented with using self-disclosure.
To my surprise, the clients got something from my self-disclosure - to paraphrase, they’d say “You get it. You understand what it’s like!”.
The Teen Years
Years later I did a large study investigating the sleep patterns of teenagers.
Back then, our surveys were printed on paper, and on one page of the survey, there was half-a-page of blank space.
So I added some questions about napping.
Later when I crunched the data, I saw there were two groups in the sample. Those who regularly napped - and those who refrained from napping.
The sample were ~300 high school students who were 6 weeks away from their final exams. They were a rare sample to get access to. And the results from the ‘nappers’ was … enlightening.
The nappers sleep pattern was similar to my sleep pattern during the final stages of my PhD.
They napped. They fell asleep later. And they were ‘surviving’ on less sleep.
Not only that, but the nappers also scored higher on a questionnaire known as the ‘dysfunctional beliefs and attitudes about sleep’. Essentially, they were showing signs of insomnia.
But when I saw the sleep patterns of these teens, I realised the nappers were just like me when I was in my final year of high school, aka:
7 AM - 8 AM = get up and go to the bus stop.
8 AM - 8:30 AM = experience the physical pain of the bright sun piercing through my eyelids as I travelled to school.
8:30 AM - 3:10 PM = study + play (except double Physics on Fridays which is when I napped).
3:10 PM - 4 PM = go home.
4 PM - 4:10 PM = fall asleep watching the animated TV show ‘teenage mutant ninja turtles’.
4:10 PM - 6 PM = nap.
6 PM - 7 PM - dinner and TV.
7 PM to 2-to-3 AM = study.
3 AM-to-4 AM = fall asleep listening to Metallica.
3 AM-to-4 AM - 7 AM = sleep
That was the school week pattern. On weekends …
Sleep-the-f#ck-in
Most Saturday nights = watch ‘21 Jump Street’; nap during ‘Booker’
Other Saturday nights = experiment with THC and alcohol (not in that order).
When it counted, my sleep was sacrificed. Whether it was during my final year in high school or my final year of my PhD.
And with this sacrificial sleep came an understanding of how others misunderstand what it truly feels like to lose control over sleep …
Passing The Baton
My wifey and I had two boys during my PhD years.
And their sleep was very different to each other.
The eldest didn’t have to be told to go to bed during his final year of high school. He was easy to wake up in the morning. He’d study. He’d have his ‘gaming time’ in the evening, and then turn it off at 10:30 PM and go to bed (not because we told him, but because he felt sleepy.
The youngest inherited his dad’s sleep genes.
His dad noticed that before he even entered his teen years, that he was a night owl.
And throughout his teen years, he frequently would undergo melatonin and/or bright light therapy - usually after school holidays or returning from a European holiday.
But rather than hear from me - why not hear it from Ethan Jake Gradisar (aka, EJ) - as I ask him about his sleep problem during his final year of high school …
EJ wearing a Retimer prototype in Stockholm, in preparation for the trip home to Australia.
Describe how you felt sleeping on weekdays vs weekends
“Waking up in darkness with a headache, horribly dry mouth, blocked nose in a puddle of my own drool. Suddenly the piercing morning sunshine assaulting my retina when the curtains are opened. Its 8:25 I have 10 minutes to eat, check my phone, brush my teeth, get dressed, get all my books and computers ready.
While waking up on a weekend was in a similar fashion, the extra minutes of rest felt pretty damn good. Being able to rest just a little bit more was good but it never felt like enough. Although I was allowed to sleep in it was only for another hour or so.
To brighten the mood, one positive was that I was allowed to go in to school at 1pm on Mondays as I had no classes until the end of the school day. Most days I was falling asleep at midnight if I was lucky, but I often would fall asleep around 2am and sometimes as late as 4.
A standout day was when I had an after school presentation that went from 7-9pm. I arrived at school at 8:50am and stayed in the library to do homework between when school ended at 3 and when the presentation started at 7. Running on about 3-4 hours of sleep.
When I got home I sunk into bed, which was the earliest I fell asleep all year (10pm).
I transcended all time and space that night.”
Describe how you felt during light therapy
“An avid description would be fighting to keep my aching eyes open, it felt like I had weights attached to my eyelids. Constantly having to readjust the light glasses was an extra burden as my head is on the larger side so the slight uncomfortableness of the Retimers was exaggerated into a feeling to plastic digging into my head.
My usual routine of entertaining myself on my phone was out the window, all logic of keeping myself awake dissolved into my brain telling me that I just needed 5 more minutes of sleep and then I would feel fine, which obviously would turn into 30 to 60 minutes of sleeping as I would immediately go into deep sleep.
Often my parents would have to lightly shake me to wake me up.”
“This persisted for most of the year as I didn’t dedicate myself to following the light therapy because of skepticism. In September of 2021, the school holidays begun, and while all my friends around me were partying and staying up very late, I decided to try to commit to the light therapy.
I found that if I played games on my phone, I would be stimulated enough to stay awake, as when I tried throughout the year to follow light therapy I would usually watch YouTube but fall asleep during a video.”
“The benefits were immediately noticeable as I was able to get to school on time every day and feel okay at the very least, I was also able to attend more study times which I would usually sleep through and instead spend more valuable time with my friends.
Although most of the final year I wasn’t sure if the light therapy was working or not. My trust is now much more cemented in the light therapy as in retrospect I realised how easily that my sleep has spiralled out of control when I haven’t used light therapy.
Another similar experience around the beginning of 2022, the beginning of my gap year, I got into a routine of staying up extremely late and talking to friends. Over the course of 2-4 weeks I became nocturnal and extremely isolated. Although the solitude of the middle of the night has its charm, the dread of waking up and feeling essentially like a zombie was not enough to outweigh it.
My trust in light therapy transferred from my last experience with helping my bad sleep schedules. Since this I have made a proper recovery and have a much more organised sleep schedule.
The stages of recovery were similar to that of an addiction, I had to accept that what I was doing was bad in the first place as I did enjoy being alone and while I still do, the lack of balance was driving a stake in my social life. I had a moment of clarity after waking up and feeling absolutely awful and saying to myself in my head “I don’t want this anymore; I want to experience my days more during the day”.
I then had to slowly work to discipline myself with the help of family to sleep earlier. Following this cemented the realisation of the satisfaction associated with waking up earlier in the day and feeling like I hadn’t lost half my day while also feeling rested.
This shift to a more healthy sleep schedule has set me up for a more efficient and hopefully more successful start to my tertiary education and all my other future endeavors throughout life. I’m thankful to have learned how to balance my sleep schedule this early in life rather than my 20s, 30s or 40s. As much as this may sound like a long winded narrative for plugging the application of light therapy… its not. It worked for me.
It’s backed up by science, b#tch.”
Conclusions?
I’ve been working in ‘sleep’ since 1998, and over that time I eventually heard ‘lived experience’ stories from a number of sleep researchers.
Even now in the ‘Age of the Sleep Coach’, a number of coaches have written about their lived experience of insomnia, sleep apnea or another type of sleep problem.
Lived Experiences are taken more seriously these days, not just in sleep, but across mental health issues.
It’s wise these days for experts and those with lived experience to contribute to expert panels.
Just note there is a limit to Lived Experience. For example, when a certain sleep expert publishes a clinical trial about sleep training infants - for example - saying something like “I don’t believe in this study. My child ….” is not a compelling argument to refute such scientific findings.
But when Lived Experience presents its voice alongside other experts to contribute towards a common goal (ie, where to direct government funding), then it may be more accurate.
And speaking of Your Voice, if the above has connected with you - if you, or someone you know - feel like the control over sleep is lost - then …
Reach out to us. Wherever you are in the world, we know people in so many continents across the world who can help you regain better control.
And who knows? One day you might be the sleep expert that helps somebody else …
Prof MG