Win the morning, win the day
‘Idiopathic Hypersomnia’. Those were the two words I had punched into my Google search bar shortly after arriving home from an appointment with the specialist at the Epworth Sleep Centre.
Like many, I had limited prior knowledge of the condition, but as with all reliable medical information, Google provided me with a simple overview of what is a complex disorder. The etymology of the phrase helped break it down. ‘Hypersomnia’ means excessive daytime sleepiness, and ‘idiopathic’ means of unknown cause or origin. Put it together and you get a neurological condition where people have high quality, long overnight sleep, yet still experience severe tiredness throughout the day.
Why was I concerned with the intricacies of a rare, obscure sleep disorder affecting just a fraction of the population? Because I’d just been diagnosed with it. It was the first time in my life I’d been offered a genuine medical explanation for the fatigue and sleepiness I’d been battling every day.
Let me give you some background.
From a young age, I’d been a very tired person. Waking up for school at 7am every day was a serious struggle, the hours between 8:30am and 3:30pm would involve holding back yawns before I could race home for a lengthy arvo nap. I’d often find myself falling asleep in class, fighting against the uncontrollable urge for my eyelids to shut mid lesson. You’d be forgiven for thinking a lecture on calculus or ancient history would send any kid to sleep, but this was happening all too often. I even had a few occasions where I would nod off standing up.
These tendencies continued with me after I finished school and into my first few years of uni. I’d rarely be up before midday, would sleep 12+ hours at night only to wake up and fall back asleep two hours later. Naps never refreshed me. When I was awake, I wasn’t entirely present, my concentration was limited and I often felt words going in one ear and out the other. I would feel constantly unproductive, lacking the energy for tasks as simple as replying to texts or hanging out the washing. Regardless of how much sleep I was getting, it was never enough.
But the problem was that I always thought this was normal.
Credit: She Scores
I’d been blinded by the narrative that busy young people were meant to be exhausted all the time. It wasn’t until a trip away where I’d be sleeping up to 16 hours some days that one of my best mates finally turned to me and said ‘I think you should go get tested’.
That precise moment sticks in my mind to this day. It was the realisation that perhaps what I was going through wasn’t normal. Perhaps, I might not have to be stoic about sleeping my life away. And most importantly that I may have a shot at getting treated for something that was beginning to consume me. It gave me a voice to speak about my sleep troubles without feeling like I was complaining about something everybody has to deal with.
I booked in to speak with my GP shortly after, but the process wasn’t as streamlined as I’d hoped. Unfortunately knowledge and research of rare sleep conditions is lagging behind in the medical world and doctors were throwing up every explanation under the sun as to why I was like this. Maybe I was getting bad sleep overnight and just needed to go to bed earlier? Maybe it was sleep apnea? Iron deficiency? Surely I just needed to eat more meat, red meat is always the answer. Maybe it was depression and I just needed to see a psychologist? These suggestions conjured up an all too familiar feeling. I felt misunderstood. I felt like the self doubt I had experienced all throughout my adolescence was only being consolidated, and this time by medical professionals. Was I just being dramatic?
I was at a dead end. The glimpse of hope I’d received earlier was struck down. I knew I needed to press on and exhaust all avenues to try to find a solution. So I got a referral to a sleep specialist and began to do some more quantitative testing.
The first involved an overnight take home test, where I had to stick a bunch of electrodes onto my head and chest, and sleep with a hefty monitor attached by a bundle of wires that stretched across my body. As you can imagine, sleeping with what felt like two bricks strapped on like a backpack and a stack of wires projecting from my skull like I was a character in a Sci-fi movie, was the perfect way to replicate a normal night’s sleep. Adding insult to injury, I had to get up at 7:30am to return the bloody machine, a time of day I am very unfamiliar with. You can understand why I was left feeling less than confident that this test would yield any useful answers.
Nevertheless, the results I received a few weeks later ruled out sleep apnea and I was booked in for secondary testing. This time it would involve a weekend stay at the hospital. I was again hooked into my ever comfortable backpack and electrodes and was left to sleep the weekend away surrounded by the windowless four white walls of the Epworth Hospital.
The process was taxing, but many blood tests, questionnaires and brain wave analyses later and I was finally given the missing piece of the puzzle that had been growing larger and more arduous by the day - a diagnosis. I let out a sigh of relief as I sat listening to the specialist explain.
Credit: She Scores
You would imagine the standard reaction to being told you have a condition that will likely affect you for the remainder of your life would involve fear and disappointment. But for me, a strange sensation of relief overcame me when I first heard the words from my doctor’s mouth. For the first time, it provided me with validation that my symptoms were not just a product of ‘teenage laziness’ or ‘a part of growing up’. It provided me hope that these symptoms could be treated and understood moving forward. Finally, it provided me a platform to speak about something that affects me daily.
I felt like I was finally able to turn a corner. However a diagnosis alone is of little help unless accompanied by the process of understanding my limitations. Something I am still coming to terms with. Attempting to balance full time uni, part time work and being a semi professional athlete is onerous at the best of times. Something female athletes know all too well. Throw a rare sleep condition on top of that and getting through a standard training sometimes feels like I’ve just run a 2km time trial, 5 times over.
As with all things, this is made ten times harder when I’m dishonest with myself and the staff at the club about my energy levels and my ability to train. Courage is so often praised in the football world. However, I’m learning that courage doesn’t involve putting on a brave face and pretending everything is fine, only to have an emotional breakdown as soon as I get off the track. Courage is ditching the stock standard ‘yeah all good mate’ response and actually communicating my current state and capabilities.
Credit: She Scores
So, whilst there is no cure for Idiopathic Hypersomnia, and treatment options are far from perfect, I sit in a much better position now than I did several years ago. The cycle of self doubt and uncertainty has dampened significantly, and I’m now able to speak comfortably with those around me about how I’m tracking.
Yet the most striking realisation of this experience is that this process happens all too often in society. Self doubt, downplaying of symptoms, feeling as if your experience isn’t worthy of medical attention; these are common occurrences for so many people. We so often punish ourselves internally for things that are out of our control. I regularly wake up late, sometimes pushing past 4pm, utterly disappointed with my lack of productivity. I feel like I’ve wasted another day while my Instagram feed is full of people who have seemingly managed to run a marathon, solve world hunger and cure cancer all while I’ve been asleep that day. Add to this, the constant voices of those who tell me my sleep troubles can be cured with an earlier bedtime, a double shot espresso or a cup of concrete, and it’s no surprise my frustrations run high.
All of this contributes to a feeling of uncertainty not unique to my experience. I’ve seen it in those around me. In friends battling endometriosis only to be told their pain is ‘normal’ and ‘just a standard part of a woman’s menstrual cycle’. In friends living with a mental illness, too burdened by the stigma to even consider reaching out for help. In those with ADHD continually labelled unreliable or disorganised with no consideration of the medical nature of their symptoms. The list goes on. The perpetual tying of medical conditions to negative personality traits is an ongoing issue. The societal assumption that certain behaviours are simply a product of someone’s ‘laziness’ or ‘weakness’ needs to stop. We need to start having more conversations, being more open minded and displaying more empathy.
Consequently, writing this piece has been an internal battle in itself. Every sentence and paragraph I’ve wondered whether I’m seemingly seeking attention, asking for sympathy or divulging information I should really just keep to myself. I’ve felt the need to seek reassurance that I deserve to write about this. The fact that I’m having these doubts is precisely the reason I need to.
But slowly, I’m learning the importance of not staying silent for the sake of appearing stoic. I’ve come to appreciate that it’s more than okay to deviate from society’s misguided expectations of a ‘normal, high-functioning human’. Perhaps most importantly, I’ve grasped the significance of being able to listen. Both to my inner self and to others.
So while I mightn’t have been born to thrive in the 9 - 5 lifestyle, or those ridiculous 6am runs some of my teammates seem to revel in, I’ve learnt that that’s more than okay. I even managed to officially finish my Science degree last month without ever attending a morning lecture in person.
While I’m still getting the hang of opening up to others and sometimes I struggle to explain why I single handedly churn through the budget for caffeine tablets at the club. I feel infinitely more comfortable knowing that I have the support of those around me. It’s never going to be perfect, but it’s much easier knowing I no longer need to stay silent.
But if you ever hear the words ‘win the morning, win the day’ out of my mouth, you’ll know something’s wrong.
