Narcolepsy and Balance
All my life I’ve struggled with balance.
Finding equilibrium is a battle I have fought internally for as long as I can remember. Still, despite being so familiar with this hang-up, I was not prepared for what this would mean after being diagnosed with narcolepsy.
I’m unsure as to whether narcolepsy was always the cause of my lack of balance in life, whether I knew it or not, but it’s a possibility I don’t disregard. My friends have always told me that I am an "all or nothing” kind of girl. I either love or hate. I am either flying high or down in the dumps. I’ve never been good with balance when it comes to my emotions, actions, or decisions. That was something I thought I had come to terms with.
Expectations of living a 'normal' life
I received my diagnosis in January 2018, in a relatively quick manner. I was fortunate enough to have a family that helped me financially and therefore was able to visit a private sleep clinic. My sleep study was booked immediately, and within a week I had been diagnosed with narcolepsy type 1 (narcolepsy with cataplexy).
The months following my diagnosis were uneventful. In fact, they were probably the best few months I had had in all my life. My medication seemed to give me bursts of energy I had never known. I finally felt “normal." I no longer feared falling asleep at work, during a meeting, or while driving.
I felt as though I would finally be able to live a “normal” life.
Changes to my medication made my impulsiveness worse
It was around three months after my diagnosis that things began to change.
I had been prescribed Modafinil but found myself again falling asleep at work. The effects were clearly wearing off. After speaking to my doctor, she quickly changed my medication from Modafinil to Ritalin.
At the time, I was so focused on the relief I felt in being able to function again that I failed to notice the psychological impact this had on me. I do believe that it exacerbated my already impulsive personality and made me react in a more aggressive manner than I usually would.
Taking a dangerous amount of stimulants just to keep up
The real struggle began after the first year of being medicated. Having just ended a 6-year relationship, I threw myself into my job in a radical way. At the time, I was working in events management, which was an incredibly demanding job. In an attempt to keep up, I started working over 60-70 hours a week!
Of course, in order to do this, I ended up slowly increasing my intake of stimulants to a dangerous amount, which then caused my insomnia to worsen and my weight to decrease dramatically (due to a lack of appetite caused by the stimulants). My inability to live a balanced life also caused my hallucinations to intensify and my cataplexy to increase immensely.
I have to respect my condition above all else
Unsurprisingly, my inability to live a balanced life had such a profound effect on my symptoms that I was forced to quit my job, move to another country in order to live with my mother, and stop my medication completely.
Almost three years later, I now realise that I have to respect my condition above everything else. I’ve had to learn the hard way that although balance is important for everyone, it is especially important when living with narcolepsy, as its absence can have extremely detrimental consequences.
Do you feel that others judge the severity of your narcolepsy based on how you look?