Living with narcolepsy day-to-day is more than just tiredness. It's more than just hallucinations. It's more than insomnia, night terrors, fatigue, brain fog, automatic behaviour, loss of memory, cataplexy...I could go on, but I believe you understand my point.
You see, the reality is that even as I write this down, I know that most people without narcolepsy will probably have that momentary fleeting thought cross their mind...
"Ok, it does sound horrible...but it's not that bad really."
Admit it...the thought has crossed your mind, has it not?
Narcolepsy, whilst the majority of people will declare that it sounds absolutely terrible, and how do I live with it? In this very same breath, I can see in their eyes that they have absolutely no idea how severely it impacts us in every way, shape and form.
You see, whilst most people will compare an invisible illness to a physical one, and proclaim that at least we can walk, talk...and even blend into society like no one's business...I find it unmitigatedly unfair when people decide to compare a neurological condition to a physical one.
Why is it that people feel comfortable trying to "comfort" us by diminishing our struggle? Yet this would never happen with anything else.
Would you compare a rape victim to a domestic violence one?
Would you compare a blind person to a deaf person?
Would you compare the tragedy of the Titanic to the tragedy of 9/11?
There are some things in life which just are simply unable to be comparative by any means.
What people don't comprehend (and I do not blame them of course) is that a neurological illness, is any condition that affects the brain, spinal cord or nervous system.
And what does the brain do?
So in reality, people that have a neurological condition, can (and do) suffer from physical ones every single day.
Narcolepsy is frightfully much, much more than than a simple sleeping problem.
It's turning on the oven to cook, only to wake up coughing to a smoke-filled room.
It's being a woman and getting in a taxi at night, fearing for your life because you don't know whether or not you will fall asleep along the way and suddenly wake up in the middle of nowhere with a rapist.
It's driving home at 12 pm in the afternoon after a good night's sleep and almost losing your life because you feel asleep at the wheel.
It's waking up, whilst renting an Airbnb at 3 am in the morning, laying upside down on the carpet floor feeling your head screaming with a thundering headache. Feelings of being disorientated and thoroughly confused as to where you are and what happened. Only to discover that you somehow fell asleep sitting up on an extremely high bed, and must have toppled over on to the floor, leading to smacking your head on the wall and, incredibly, smashing your skull on the socket and breaking its plastic cover to pieces.
It's making a cup of tea to warm up from the cold outside, only to remember that you have no milk, but then deciding to drink it black anyways. Sitting on the couch and beginning to laugh at something ever so slightly, and suddenly feeling your entire body involuntarily reacting to that emotion, causing your wrist to slack abruptly and not being able to do anything but watch as the mug tips over, spilling the boiling hot tea all over your lap.
It's waking up (for once!) full of energy and excited to complete all your tasks and goals for the day, only to reach 9 pm and realizing that you were didn't cross a single item off that list.
It's waiting for months to go to this one party, buying that new dress; spending money and hours on makeup. Feeling great and confident, only to find that suddenly your body feels as though you haven't slept in days and without warning, you find yourself fighting every tiny little muscle in your body...praying to just staying upright.
It's holding your firstborn child in your arms and, in what is supposed to be the most blissful moment of your life, a single memory pops into your head. It's enough to send a shiver down your spine when you remember spilling that hot tea all over your lap...and you sit there wondering...if you possibly could ever drop your own baby?
Need I go on?
I think it's important to share these embarrassing but necessary incidents that happened to me and other friends of mine...so that you know that narcolepsy is so so so much more than simply falling asleep in inconvenient places.
Thank you all once again for reading!
I continue to be astounded by those of you who continue with me on this crazy journey!
The next post I will be updating you guys on where my life is at right now as there are many things that will have changed! Will post soon!
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