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According to my specialist I'm not tired, I have impaired wakefulness. It is certainly a more apt description of my experience. When my wakefulness is impaired it’s like my brain is engulfed in fog. Some of the time (thanks to stimulant medication), I can think reasonably clearly. Then fog descends, cloaking my brain with its dullness, slowing down my thoughts and preventing me from thinking clearly.
I push on. I try to hide or mask my impaired wakefulness. Using my fingernails, I try to pinch myself awake. I've done it so often for so long, it's almost become a subconscious reflex. I pinch anywhere that my skin is soft - on my inner thighs, my stomach, my arms, my neck- till my body is covered in clusters of tiny welts, as well as the muted marks from earlier attacks.
The shroud of fatigue cast a long shadow over my teens and early twenties. What were supposed to be the most vibrant years of my life were instead one long struggle to stay awake. In high school I used to get on the bus after school and beg my friends to talk to me so I wouldn't fall asleep. Within a few minutes I was almost always asleep, no matter how much my friends tried to keep me awake. Thankfully we lived at the end of the bus route, so I only missed my stop once.
After I finished school I went to university where I deliberately lived near enough to the uni that I could sneak naps in around lectures. Nearly all of my lecture notes contain a couple of paragraphs of illegible writing from when my brain got foggy.
After a while I started to think the fog was normal. Answers from numerous doctors hadn't been forth coming so I worked full-time even though it meant my legs were completely covered in welts and I spent most evenings in a fetal position unable to move, my whole body heavy and aching with fatigue. It wasn't until, at 27 years old, I finally stumbled on a diagnosis through a new housemate whose friend's husband had narcolepsy. I'd read the symptoms of narcolepsy several times but hearing what it looked like in a real person was the final break-through. After waiting for so long to get answers, I was almost angry at how simple it was to get a definitive diagnosis. A few sleep tests later and it was confirmed... I had/have narcolepsy.
There are no cures for the condition - once it develops you have it for life. But there are treatments that address the symptoms. After I took medication for the first time, I went for a long walk on the beach with my housemate and didn't fall asleep when we stopped to sun-bake. It was pure bliss.
A few years later, when I got married and wanted to start a family, I had to decide whether to stop taking my medication due to the unknown risks to my baby, or to keep taking it so that I could function and be able drive and do basic things for myself like taking myself to doctor’s appointments. We live in a semi-rural area, so I chose to take the drugs.
Recently, my now primary-school-aged boys were assigning relevant superpowers to every member of the family. My husband was given strength and the power they gave me was sleeping. I tried to turn it into a positive, suggesting it would be cool if you could make things come true by dreaming them. But it still hurts that their immediate association for me is sleep.
I often have auditory hypnogogic hallucinations when I'm trying to sleep. I hear my children crying and jump up only to find them sleeping soundly. I hear the crunch of my husband's car in the driveway only to find he's still at work, or think someone breaking in at night and anxiously wake up my husband to discover our house is safe and sound. It makes me doubt myself.
I also have mild cataplexy. When I laugh, my head bobs and sinks to my chest and I don't make a sound. Its never a great look and can be very embarrassing! It also turns out that sound is an important part of the communication process. Not being able to laugh properly, means not being able to communicate my response to a joke or playful banter.
Despite the fog and the challenges narcolepsy brings, its not all negative. I've still managed to carve out a happy life that I am proud of. I also remain hopeful that the advancements in medicine will continue and one day they'll find a cure. Then my wakefulness will no longer be impaired and I can finally enjoy being fully, completely, awake.
**NB: Narcolepsy is an incurable neurological condition, affecting the brain's ability to regulate the wake/sleep cycle.
For more information about narcolepsy please see: http://www.narcolepsyaustralia.org.au/about-narcolepsy.html
Photo by Abbie Bernet on Unsplash
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