It is the day I was walking down the hallway at home when my legs gave way and I fell to the floor. I couldn’t get back up or move my body. It was weird. I could hear my son beside me asking if I were ok, and inside my head I was telling him ‘yes’, but my mouth wouldn’t move so I could say it out loud. I just lay there, wide awake, but unable to move, speak or open my eyes.
As I set out on my journey for answers, I had no idea that other symptoms I had been experiencing for years were all related. Such as the constant desire to sleep during the day, difficulty concentrating at work, brain fog, automatic behaviors, reduced motivation and energy, insomnia, waking multiple times through the night, not being able to move sometimes upon waking, and hearing voices.
I had always dismissed them and thought they were just a part of life, a combination of years of single parenting, working full time and managing the medical conditions I already had.
I was no stranger to pain and adversity. I had endured migraines and daily headaches for years and CT guided epidural injections in my spine to alleviate pain caused by five disc bulges in my back and neck.
At 42 years of age, in 2012, I was diagnosed with a cornea disease in both eyes and went through two cornea transplants (three now). I thought that the transplant surgery and associated anti-rejection drops that had to be injected directly into my eyes afterwards were the worst thing I would ever go through. I was wrong!
Between September 2016 and March 2017, I had numerous episodes of full body weakness. They happened at home, at parkrun, at work, in the street on my lunch break, at cafes, everywhere.
Desperate for help with whatever this was that was taking over my life, I barely thought about anything else. I just needed to make it stop so I could go back to being ‘me’. The fun, happy, reliable, productive me that everyone knew.
But as I was fighting to be heard and understood, my brain scrambling for the right words to describe my experiences, I felt my grip on life slipping. The rocky and at times mountainous terrain that I had once navigated with familiarity and ease was now difficult and unrecognizable.
Trepidation and uncertainty crept in as time and time again I was turned away.
‘Wrong way’, ‘dead end’, ‘turn around’, ‘go back’.
There were so many opinions, thoughts, suggestions, offers of advice and misdiagnosis.
I ran as fast as I could trying to keep up and process them all, but it was exhausting.
In early 2017 I spent a week in hospital while they tried to work out what was causing my episodes of muscle weakness. After multiple tests I was discharged with a principal diagnosis of a possible functional neurological disorder and a follow up for a sleep study.
In March 2017, at the age of 47, and after several misdiagnosis, I was diagnosed with type 1 narcolepsy (narcolepsy with cataplexy). My diagnosis took about 8 years from the onset of symptoms.
Narcolepsy is a neurological condition that impairs the brain’s ability to regulate the sleep wake-cycle. Symptoms include:
- Excessive daytime sleepiness – periods of extreme sleepiness during the day that feels comparable to how someone without narcolepsy would feel after staying awake for 48 – 72 hours.
- Cataplexy – episodes of muscle weakness which can be with or without warning and usually triggered by emotions such as laughter, surprise, anger or exhilaration. For me they are also triggered by stress, exhaustion and feeling overwhelmed or anxious. They can be anything from the slackening of the jaw, head falling to the side, drooping eyelids, or as in my case, a complete body collapse. Textbook descriptions will tell you that the duration lasts from a few seconds to a few minutes, however experience and connecting with other people with narcolepsy has taught me that duration varies among individuals. A typical cataplexy episode for me lasts anywhere from 15 minutes to 45 minutes, with some even lasting several hours.
- Hypnagogic and hypnopompic hallucinations – these are hallucinations that you see, hear or feel upon falling asleep or waking up and can be very frightening and confusing.
- Sleep paralysis – this is the inability to move for a few seconds or minutes upon falling asleep or waking up. Often accompanied by hallucinations.
- Disrupted nighttime sleep – due to the timing of sleepiness being ‘off’, people with narcolepsy fight sleepiness during the day but then struggle to sleep at night.
At the time of diagnosis, I didn’t really have much of a reaction. That was because I didn’t know or understand what narcolepsy was or how serious it was. I just assumed I would be given medication to take and that life as I knew it would continue as planned.
Life did continue, but not how I knew it and certainly not as planned!
I left the specialists office with a prescription for stimulants to help me stay awake during the day, a pamphlet on the importance of sleep hygiene, a letter for my employer to say I needed a nap in the middle of the day, and instructions not to drive until I had gone 6 months without a cataplexy episode.
Nothing was mentioned about how to manage my cataplexy nor was I given any information on or contact details for support groups for people with narcolepsy.
So, in my mind, because the specialist hadn’t said too much about it, I thought it was nothing to worry about and easily fixed with medication. I was more upset about not driving for 6 months!
It wasn’t until I started doing my own research and connecting with online support groups such as Narcolepsy Support Australia, Sleep Disorders Australia and Project Sleep in America, that I began to understand the complexities of this sleep disorder and just how serious it was.
The more I learnt and understood about narcolepsy, the more frightened I became and the more I felt the need to explain or justify myself, my actions, my words, my behavior, my body. I had never felt this need before. Not like this. This was an obsession. But then, I had also never felt so helpless, out of control, frustrated, misunderstood, lost, alone, abandoned and misjudged before.
Initially I thought I was doing the right thing talking about it to my friends, family and work colleagues. I had always been an open book when it came to my life so I didn’t see why this should be any different. But I soon learned of the stigma surrounding this invisible condition and that no one wanted to hear about my life with narcolepsy with cataplexy. Not even my close friends.
I became severely depressed and anxious and later developed social phobia. It seemed having a diagnosis made everything worse. A diagnosis for an invisible, misunderstood medical condition that is portrayed in the media as comical.
There was nothing comical about this condition.
Being your own advocate is so important, especially when it comes to finding the right treatment for YOU.
Everyone is different and we experience life differently. We also experience and tolerate pain differently. Some people are living with multiple medical conditions, others with one or none. It doesn’t mean that the person living with multiple medical conditions is any worse off or in more pain than the person living with one, but it can mean that symptoms from their multiple medical conditions are impacting on each other as well as the impact of side effects from various medications.
Just because you cannot see the symptoms of a medical condition doesn’t mean they don’t exist.
Treatment therefore needs to be individualized, not one size fits all. Two patients can have the same medical condition but not necessarily experience all the same symptoms in the same way or to the same degree.
It can take a while to find the right treatment and it may even be a combination of several treatments that works best. Either way, with the right specialist and the right treatment, it’s amazing the difference it can make to someone’s quality of life living with a chronic illness. Especially their mental health!
Looking back, I have no idea how I managed to function the way I did for so long. But I did. And there’s days even now that I wonder how I am going to continue functioning. But I do. And yes, I use the term function loosely, because compared to the days before I got narcolepsy, I managed to accomplish so much in a day. Easy to do when you’re not living in a constant state of sleep deprivation. Nowadays I still function. I just function differently.
I believe that the self-discipline, motivation, perseverance, dedication and never give up attitude I have to life, and my running, prepared me in a lot of ways for the journey to diagnosis and beyond. Oh, and stubbornness too. Yes, being stubborn definitely helped! It helped me keep fighting to be heard, understood, listened to and eventually helped.
There are still days when I miss the ‘old me’ and probably always will. But the ‘new me’ is always finding ways to adapt so I can continue running and living life to the fullest.
Running with narcolepsy with cataplexy may make me vulnerable and even feel weak at times, but it also makes me feel alive and strong!
To anyone out there feeling invisible and alone, struggling to adjust to a new ‘normal’ I say to you:
“I am so proud of you and how you are adapting to your new “normal”. I know it’s not easy. I know it hurts. I know it’s financially difficult. I know it’s heartbreaking when friends don’t get it, and I know it’s sad when you feel invisible. But I see you. I see all your struggles. I see how hard you are trying. I see you get up over and over again when you are knocked down. I see your strength and determination to keep going when others would have quit by now. I see your beautiful smile as well as the hurt in your eyes. I see your caring nature and I see the spark that is still there waiting to be reignited. I see what you are capable of. Keep going. Keep getting up and showing up. You are so close. You’ve got this!”