Life is an exciting journey and I can’t wait to see what I can achieve.
Think of your average first year high school student - an oversized blazer they’ll “grow in to ”, an ignorantly large schoolbag that’s bigger than the child themselves and of course, a young face full of confused excitement. That was me at age 11. Like many others, I was in choir, school band, played hockey every week and socialised with my friends at every opportunity.
Then one day at the end of first year, a teacher put on “James May on the Moon” as a Friday afternoon treat. No sooner had it begun than I woke up with all my class staring and giggling because I had fallen asleep on the desk. To say that 12-year old me was mortified would be an under-statement. I put this inability to stay awake down to exhaustion at the end of an exam week, but I now know that this was to be the first of many inappropriate naps.
I managed to coast through second and third year of high school but as the years went on, I found that I was literally sleeping through every class, waking up at the end and moving class to repeat the same routine. I was in the top class of an established grammar school and somehow managed to keep up with my classmates despite my napping for the first 3 years. However, when it came to GCSE years, I started to fall behind because I was sleeping in every class and not writing down notes - it’s crazy how often I woke up at the end of a class with an ink-stained notebook because I’d fallen asleep while writing things down. English literature was one of my favourite subjects in school but one day I was reading a script in front of the class and within the few seconds it took the other person to say their line, I was fast asleep dreaming about something completely unrelated.
“No sooner had it begun than I woke up with all my class staring and giggling because I had fallen asleep on the desk. To say that 12-year old me was mortified would be an under-statement. I put this inability to stay awake down to exhaustion at the end of an exam week, but I now know that this was to be the first of many inappropriate naps.”
Again, embarrassing, but this became the norm and people weren’t surprised anymore when I fell asleep in every class. My English teacher was the first person to mention narcolepsy to me. Having never heard of it, I went home and showed my mum some YouTube videos about narcolepsy and we read up on the condition - the symptoms I was showing were undeniably those that characterised narcolepsy ! Fourth year brought more and more challenges - due to sleeping through basically every class, I had to catch up what I could at home often researching and teaching myself what had been covered that day before also tackling a mountain of homework.
It was at this point that I began to lose confidence in myself and doubt my ability because my marks were much lower than they should’ve been. I finally expressed my concerns to my parents and I cried to them about how rubbish I was at everything. At this point, my mum took me to our GP and so unknowingly, we started the 6-year process of getting a diagnosis.
Anyone who has got a diagnosis of narcolepsy will know that it is a long, draining process. Unfortunately, quite a few doctors did not appear to believe me when I told them about the excessive daytime sleepiness I was experiencing and the doctors who did believe me put it down to anaemia 9 times out of 10. Obviously being low in iron doesn’t help feeling fatigued but I constantly tried to say that I knew there was something more serious going on - but most of the time this fell on deaf ears. Further to countless blood tests, MRIs, ECGs and a lumber puncture, I was referred to a private sleep clinic in Dublin where my suspected diagnosis was confirmed after an overnight sleep study. I was 18 when I got my diagnosis. My parents were gutted for me but I actually felt mostly relieved that at last I could put a label on my condition and move forward, rather than being told to “have a coffee” or “go to bed earlier”. It wasn’t until roughly 3 months later that I processed the fact that this condition would affect my life forever and that was one of the most difficult things to contend with. I worked at conquering this feeling by reminding myself that I’d already been living with narcolepsy for 6 years at this point and so it’s simply a new norm for me. It goes without saying that I could not have survived my school years nor could I continue to be as positive and happy as I am now without the support of my parents and my best friend, Hannah. All three of of these wonderful people have been by my side through thick and thin. They’ve dealt with people throwing dirty looks at me when I’ve been asleep, they’ve put up with my mood swings when I’m snappy due to being exhausted and so much more. They have listened to me cry, shout and even laugh about my condition hundreds of times. I am so blessed because my parents have never failed to pick me up when I’m at my lowest and Hannah has been an inspiration to me for as long as I can remember. I truly am the luckiest girl.
Having narcolepsy has given me so much more character, strength and most of all, empathy for others who have conditions that are out of their control, especially those that are invisible illnesses. Before I started falling asleep 24/7, I couldn’t have imagined how that could even be possible...what a strange disorder eh?!
“Narcolepsy is a part of my life, but it does not control my life. It’s so important to continue striving for more. Take the good days with the bad days and never forget to be grateful for all you have. Life is an exciting journey and I can’t wait to see what I can achieve.”
As with everything in life, there are good and bad points to having narcolepsy. The bad ones are fairly obvious, but the good ones, like being able to sleep like a log in even the noisiest hostels, nap on command and my personal favourite, falling asleep when someone is telling a boring story, make life with narcolepsy that little bit more entertaining.
This strange 1 in 2500 condition is often misunderstood and awareness is very limited. As a result, over the years it has been difficult to deal with the insensitive comments people often made, especially because for years I didn’t know this was a genuine condition. Although it’s hard and extremely frustrating at times, I know I cannot blame people for not understanding, it is difficult enough for me to comprehend the condition so its nearly impossible to understand if you don’t experience it yourself.
Over the years, narcolepsy has impacted my life in ways I could never have imagined. It has made me feel embarrassed, sad and at times, I have genuinely wondered if there is any point in continuing to try at anything given that for now, this illness is incurable. However, having lived with this illness for over a decade now, at 22 years old, I can promise that it is SO worth continuing to try, regardless of falling asleep or not. People often can’t believe I have narcolepsy when I tell them, they are baffled at my ability to stay positive and carry on living the life I’ve dreamed of. The long and short of this amazing story I am living is that yes, there will be down days, there will be angry days, days when you feel like you can’t go on and that is ok. It’s completely ok to take a relaxed day and carry on smashing life the next day.
As I write this, I’m enjoying a sunshine holiday with friends who accept and support me for who I am. I have amazing plans for next year as I go to France and Argentina to complete work experience and study abroad as part of my modern languages degree. Narcolepsy is a part of my life, but it does not control my life. It’s so important to continue striving for more. Take the good days with the bad days and never forget to be grateful for all you have.
Life is an exciting journey and I can’t wait to see what I can achieve.
Janine Ferry
