I spent all of 2017 thinking about sleeping, about how tired I was, struggling to stay awake during the day and lying awake all night. Week on week, month on month it grew worse. By March, I was not only not sleeping when I went to bed, I was afraid to go to bed too. Bed was a dark place where blankets wrapped around sweaty limbs, noises were sinister and there was no such thing as being comfortable. No matter how I lay, if I stayed in one position for too long I would start to get pains in my joints and have to re-adjust all cushions and blankets I had bolstered around me in an effort to avoid exactly that. Bed meant nightmares. Bed meant looking at the clock in between half-hour-long micro-sleeps, waiting for it to be a reasonable time to get up. Some nights I wouldn’t sleep at all. I would lie there for three or four hours, some days just counting down the minutes until the buses started running, so I could escape what had become an ever-waking nightmare. Some mornings I would fall asleep around 6am but would only make it to 8am before the crèche outside my apartment window would flood with screaming and crying toddlers. I’d hear them start to arrive and I would cry, I could not believe that the night was over and I had to try and make it through a whole new day.
Every day was a new horror. I grieved for myself and the day that was about to unfold before I even got out of the bed. I couldn’t sleep at night and I couldn’t keep my eyes open during the day. I would be so tired I couldn’t read or write a text message, my eyes would be crossing and my vision going double. My eyelids were heavy and I was almost always on the verge of falling asleep. I fell asleep and woke up everywhere; cars, dressing rooms, busses and bus depots, trains and stations I didn’t mean to go to, waiting rooms of all varieties, park benches, the cinema, other people’s houses at socially inappropriate times; basically any time I sat or lay anywhere for more than about three minutes I would fall asleep. Depending on where I was, I might be left to sleep, like if I were at my parents’ or boyfriend’s house and I would wake up having had a vividly lifelike and disturbing dream, with an extremely dry mouth and a sense of general embarrassment and confusion. If I nodded off in a public place, something would wake me and my head would snap back and I would begin a frantic body check- phone, purse, keys, and bag. Had anyone touched me? Had I been out for long? What time was it? More than once, I even fell asleep standing up. Twice in a very slow-moving queue in Lidl, which was bizarre and terrifying, once in a crowded Luas and I know it happened more than that but it was fleeting and unmemorable. The exhaustion I felt was unlike regular tiredness. The best way I can describe it is as severe jetlag. My mind was slow and my thoughts were incoherent. It took me ridiculous lengths of time to process and reply to people’s questions and sentences. I stopped socialising because I couldn’t follow the conversation, and even if I could, my body was aching and hurting all over anyway. Moving often felt like wading through bog and I regularly had spots and zig-zags of bright orb-like lights around the edges of my vision.
Around September, I started to see things. The first was a little girl. She sat under my kitchen table and I couldn’t see her face because it looked like it had been scribbled over with black marker. Next, I saw her again, this time with a woman who, (I don’t know why) I am certain was her mother. My best friend’s Granny died. At the funeral, another figure with the scribbled out face stood just behind my right shoulder for the whole service. Towards the end of the mass, as I knelt with my torso resting on the pew in front, suddenly felt wet and sticky, right across where my abdomen was pressed to the pew. I peeled myself away from it and looked down to see blood dripping down, saturating my clothes, pooling in puddles on the floor. My head snapped back and when I looked again I was completely clean and dry. I began hearing things too. I thought that there were beetles in the walls. Though I couldn’t see anything, a loud, manly, grunting snore came from under my bed at night.
For a long time I didn’t say anything and kept all of this to myself. I was convinced I was experiencing psychosis, even though I knew the things I was seeing and hearing were not real- something that people truly suffering from psychosis can’t do. In true psychosis, the person believes entirely in the reality of everything they see and hear. In my reality, life just got more and more confusing. I couldn’t tell the difference between reality and my visions. I began to have night terrors and Luke would wake me and I would be completely paralysed. It didn’t occur to me at the time that I was experiencing sleep paralysis, all I knew was that I couldn’t even speak, only grunt and moan and wait, painstakingly wait, before first my lips and tongue would begin to work, and then the rest of my body would slowly come round too. He would ask me what I needed, what was wrong, and all I could do was grunt and moan in response. He would tell me he couldn’t understand and I would try again but my voice just grew louder, with no less clarity than before. Eventually, when I began to have some movement again he would help me to the bathroom because I could not walk myself. At this point, things were beginning to reach breaking point.
In desperation, I told my psychiatrist about what I had been experiencing, something I was desperately trying to avoid. I was so afraid of being told I had schizophrenia or something similar, but the fact that I knew my delusions weren’t real ruled that out. I went home with a change to my usual medication but things only continued to get worse. One Saturday in mid-December, Luke brought me in to A&E. I was incoherent and unable to explain what was wrong. I hadn’t slept for more than a few hours in six days. After 4 or 5 hours, Luke had to leave and I was left alone in a private room. I thought that Dr. Phil came to assess me, a little later I was trapped in a shower and couldn’t leave because three women were around the corner and I had no clothes on. When the real doctor came, he kept telling me I made no sense and that he couldn’t understand me- I was not impressed because Dr. Phil understood me just fine. I was admitted to the psychiatric unit at 12.30am after 10 hours of visions and mystery sounds in A&E.
On Monday, I saw my own doctor and he came with a revelation that neither of us could believe we hadn’t thought of before. He believed I was suffering from narcolepsy, that my visions were in fact hallucinations- that everytime I had a vision I was either slipping into or waking up from what may have only been a nap lasting a few seconds. I was having hallucination, caused by the sleep disorder, narcolepsy. It made perfect sense. Every single symptom checked out- it’s just so rare that it occurred to neither of us. I did a written Q&A that further quantified our belief in the narcolepsy theory. We won’t know for certain until I attend the sleep clinic, of which, there is only one and there isn’t an appointment available until March/April. I’m not overly concerned about it, I’ve lived it for the last 9 months to a year, I exhibit every symptom.
"Narcolepsy is a neurological disorder that affects the control of sleep and wakefulness. People with narcolepsy experience excessive daytime sleepiness and intermittent, uncontrollable episodes of falling asleep during the daytime. These sudden sleep attacks may occur during any type of activity at any time of the day.
In a typical sleep cycle, we initially enter the early stages of sleep followed by deeper sleep stages and ultimately (after about 90 minutes) rapid eye movement (REM) sleep. For people suffering from narcolepsy, REM sleep occurs almost immediately in the sleep cycle, as well as periodically during the waking hours. It is in REM sleep that we can experience dreams and muscle paralysis - which explains some of the symptoms of narcolepsy."
Symptoms of narcolepsy include:
- · Excessive daytime sleepiness (EDS): In general, EDS interferes with normal activities on a daily basis, whether or not a person with narcolepsy has sufficient sleep at night. People with EDS report mental cloudiness, a lack of energy and concentration, memory lapses, a depressed mood, and/or extreme exhaustion.
- · Cataplexy: This symptom consists of a sudden loss of muscle tone that leads to feelings of weakness and a loss of voluntary muscle control. It can cause symptoms ranging from slurred speech to total body collapse, depending on the muscles involved, and is often triggered by intense emotions such as surprise, laughter, or anger.
- · Hallucinations : Usually, these delusional experiences are vivid and frequently frightening. The content is primarily visual, but any of the other senses can be involved. These are called hypnagogic hallucinations when accompanying sleep onset and hypnopompic hallucinations when they occur during awakening.
- · Sleep paralysis : This symptom involves the temporary inability to move or speak while falling asleep or waking up. These episodes are generally brief, lasting a few seconds to several minutes. After episodes end, people rapidly recover their full capacity to move and speak.
There is no medical or pharmaceutical treatment for narcolepsy- words that are the opposite of music to my ears.
Patients with narcolepsy can be substantially helped - but not cured - by medical treatment.
Lifestyle adjustments such as avoiding caffeine, alcohol, nicotine, and heavy meals, regulating sleep schedules, scheduling daytime naps (10-15 minutes in length), and establishing a normal exercise and meal schedule may help to reduce symptoms. (So, no fun allowed.)
Since being in hospital I have experienced some relief of symptoms with the regular meal times and regular medication times. However, I’m also exhausted and sleeping for at least three hours during the day (three hours plus...). I’m sleeping better at night, waking up less frequently though still having very vivid dreams/hallucinations, which often prove confusing and disconcerting.
I would never in all my life have thought that I could suffer from narcolepsy. When you hear narcolepsy you think about people walking down the street and spontaneously falling asleep and just dropping their stuff all around them. The first time I heard about narcolepsy was from Baz Luhrman’s Moulin Rouge, with the Narcoleptic Argentinian and he falls asleep on stage and falls down some stairs or something. It’s comical when it’s made comical- not so much otherwise.
So now, I’m in hospital going through a process of switching up medications because some of my old ones could have been potentially worsening the narcolepsy, and obviously we want my medication to have more positive than negative effects on my life! I’m not sure what that process will be like yet, but at least it gives me something to mull over while I’m waiting on my consultation appointment with the sleep clinic.
I’m still practising my yoga every damn day and it’s keeping me going. So you’ll be seeing daily uploads on the homepage from my Instagram feed! I’m doing a 12 day challenge at the moment, today is day 2 but it’s never too late to join in, all the info is with the Insta photos.
As always, my Yogilateral Warriors, you’re the best. You’re such a source of strength and encouragement for me and give me the courage to keep baring my soul like this on a regular basis! You guys are inspirational.