Ten years of tiredness was taking its toll. I longed for some relief, to be energised rather than filled with fatigue. Then my friend told me a story about a neurological condition called narcolepsy, the symptoms for which resonated with my own.
imagine staying awake for 72 hours
The easiest way to describe narcolepsy is to imagine staying awake for 72 hours. The tiredness is unbearable and the urge to sleep is strong. Any effort to stay awake depletes whatever crumbs of energy are left in your reserves. Your cognitive function deteriorates, making it difficult to focus. Responses slow as your hand-eye coordination become increasingly uncoordinated. Memories become messy, making it difficult to recollect words. You are left feeling anxious about failing and aware that people might perceive these failings as incompetence. And, as if that wasn’t bad enough, sleep deprivation affects your ability to process emotions. Seriously disrupting how you feel and interact.
One way to manage tiredness is to take a nap. This is the easy part. I simply close my eyes and let my hypocretin-battery recharge. Things become tricky when the need to nap coincides with time-bound commitments like exams, employment and appointments. Society doesn’t wait for sleepy people, even if you are clinically tired. Fulfilling my obligations would leave me tired, and this tiredness would turn into exhaustion. And, when the exhaustion became too much, I would visit my GP in search of an answer. This became a vicious cycle; to function I become tired, tiredness turns into exhaustion, I feel ill, I struggle, and then I make an appointment with a doctor. It was obvious that something was amiss.
sleepy sensations
Focusing on nutrition, one GP gave me a lesson on tea. Apparently, my humble morning brew was prohibiting the absorption of iron, resulting in a low red blood cell count and anaemia. Converting to coffee was easy but it did nothing to combat my need for sleep. Another GP encouraged me to eat meat after I confirmed following a vegan diet. Insulted, I chose to ignore this advice. As the years passed, so too did the countless doctor appointments and blood tests. Again and again, I left the surgery with neither an explanation nor a cure.
When I was offered post-viral chronic fatigue as a possible explanation my heart sank. Subtle reassurances that I would get better were unconvincing and gave me no comfort. Without tests and treatments all I had was hope. I studied chronic fatigue and tried everything I could to nurture myself back to good health. I prioritised exercise, adding tai chi and running to my daily cycles and walks. I focused on food, eating mainly wholefoods to improve my gut health. The area that I felt least able to control was work. As a full-time student with a part-time job, I regularly worked sixty or seventy hours each week. Temporary teaching and research contracts added to my work load. No wonder I was exhausted. My social life had all but vanished. Tiredness was dominating my life. Then, one day, a conversation with my friend changed everything.
no nap, no visit
When arranging a visit for high school pupils, my friend received an unusual request. A pupil with narcolepsy wanted to know if he could have an afternoon nap when visiting the university. Without this nap, he would be unable to attend. A suitable space for sleeping had been identified, but the location was noisy. Indifferent about noise, the visit could go ahead. There was a chance that he would experience hypnopompic hallucinations – a dream-like state that continues after wakening – for which he would need some assistance. As my friend described the visiting narcoleptic’s needs, he pointed out how these needs differ to stereotypical understandings of the condition. It wasn’t simply about uncontrollable bursts of sleep. Quite the opposite. It was about the use of naps as a control measure. Napping is a method of managing narcolepsy.
what’s narcolepsy?
Aspects of my friend’s story resonated with my own experiences. So much so that I immediately made an appointment with my GP. At this point, I had another strange symptom. What started as a tickly sensation in my brain whenever I laughed had since progressed to a fleeting wave of paralysis. Laughing, or simply thinking about something funny, would lead me to momentarily lose the use of a limb. Explaining this strange symptoms was difficult. In fact, I didn’t talk about it until the physical symptoms were visible to other people. I didn’t know that this was cataplexy, a condition that accompanies type 1 narcolepsy. And when I asked to have this test I didn’t expect the GP to ask, “what’s narcolepsy”?
Turning to her computer, she reached for answers. Like my friend, she was surprised that I didn’t conform to the stereotypical profile for narcoleptics. Nevertheless, she was also unable to dispute the possibility that I might have narcolepsy. I was referred to the sleep clinic at Aberdeen Royal Infirmary and informed that I will have to wait for an appointment. Significant periods of time passed. I then discovered that specialists wanted to rule out sleep apnoea before testing for narcolepsy. It took a long, sleep deprived year to confirm what I already knew: I did not have sleep apnoea. I was struggling with my condition more than before. It felt like I was close to finally understanding my condition, but the process felt like wading through water.
Information that I requested this was added to my notes. I know this because every conversation I had with medical professionals would begin with the same statement, “I believe you asked to be tested for narcolepsy”. Receiving this potentially loaded statement was tough. Following up with something like “to understand why you have been tired for ten years” would have indicated at least some empathy. But, as I sat opposite the consultants, all I could do was follow up with a simple “yes”.
to be continued …
Discovering Narcolepsy will continue with a guide to narcolepsy symptoms.
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