No one is more understanding when you tell them “I’m so tired!” than I am. Hi… My name is Kimi and I’m a narcoleptic.
In case you don’t know what that is, Narcolepsy is a neurological sleep disorder caused by the brain’s inability to regulate sleep and wake cycles normally. Typically, Narcoleptics have a “broken” REM (Rapid Eye Movement) sleep which they experience about 5 minutes into their sleep. Many people experience their REM sleep an hour or so into sleeping and get a deeper, longer sleeping experience.
The main characteristic of narcolepsy is Excessive Daytime Sleepiness (EDS), even after getting what most would consider to be an adequate amount of nighttime sleep. A person with this disorder is likely to “nod off” briefly or even fall asleep several times a day – often at inappropriate places and times.
Using myself as an example, I am typically in bed every day a total of 12 hours as I struggle to get enough sleep in order to function normally – cook without burning my apartment down, drive my car without nodding off and getting into a major accident, performing the tasks at my place of employment. Falling asleep in public is very common for me. Whether I be out to dinner, watching TV with my boyfriend or yes… even at very loud venues such as a club, I’m the master of falling asleep.
Why am I even telling you all of this? I am so tired (excuse the pun!) of people complaining to ME about how tired they are and then trying to have a pissing contest with me about it. No one is more empathetic to the sentence “I am so tired” than a Narcoleptic. We understand tired. We live tired.
So you went to bed late last night. Maybe you had to get up earlier than you wanted. Your newborn kept you up last night. Been there. Done that. And I had a sleeping disorder kicking my ass the whole damn way. When I tell you “I’m really tired”, I mean it. I don’t even use that phrase lightly any more. I know the distinct difference between me feeling legitimately tired and feeling fatigued from work. It doesn’t matter how tired you think you are. I am ALWAYS more tired than you are. And it doesn’t stop there. Check out what else I get to deal with as a Narocleptic…
We already touched base on EDS, so let’s get to the other 4 classic symptoms of Naroclepsy. Because I have more trouble with some than others, I am going to list them in the order of my own difficulty.
Cataplexy is a sudden loss in muscle tone often triggered by emotions such as laughing, crying, terror, etc. The exact cause of cataplexy is unknown, but the condition is strongly linked to experiencing intense emotions and reduced levels of the neurochemical hypocretin. I break up my own experience with the episodes into 3 different categories as described below:
The “Cutting Myself Some Slack”: The facial muscles will go slack and/or I will experience a full head bob. I interpret this as my body telling me to not push my luck and as a warning that I’m more tired than I think I am. As a personal note, this tends to happen most often during “highs” – where my body is running on a lot of adrenaline rather than sleep. I can typically regain control of my body quickly through breathing and concentration techniques that I have found work for me. You may not even notice it happened. I think I’ve gotten pretty good at hiding it.
The “Almost Faint”: The most unpredictable of episodes for me (by that I mean, I haven’t figured out what emotion or situation is really causing it). It all starts off the same – the muscles in my face will go slack and my head will have a sort of cloudy feeling. That’s when my arm and muscles will feel sort of numb and heavy as they lose strength. I call this one the Almost Faint because in this scenario, I manage to grab hold onto something in order to prevent a full collapse. My upper body strength always returns first and by hanging onto something – a shelf, a person… I am able to steady myself until the episode passes and I regain control.
The “I’ve Fallen and Can’t Get Up”: I’m a walking Life Alert commercial. This is the thankfully the most rare of my scenarios having occured only 6 times since I was diagnosed a few years ago. A full-blow attack like this one is often mistaken as a stroke – it looks similar. It starts just as the others with the facial slack, the loss of muscle tone. The difference for me personally is my slurred speech and blurry vision. My brain while completely aware, struggles to understand the world around me because it’s too busy trying to figure out how to prevent me from falling and injuring myself. That’s the goal… when I know I’m going down, figure out how to do it with the least possible injury. Fortunately, the fall is slow and progressive and now that I know the first several seconds of the episode, I can prepare for the fall by quickly assessing my surroundings. So far, I’ve managed to sit down “Indian Style” or fall sideways to avoid hitting furniture.
This phenomenon (because seriously, that’s what it is) is basically the feeling of transitioning into sleep – being sort of half awake. It’s very common for Narcoleptics because of our erratic REM pattern. It’s what causes our vivid, intense and often odd dreams. As a personal note, I once dreamed about a dream and got stuck there. I felt like my body was actually present in the second dream and I had to tell myself to go to sleep and dream about the first dream in order to return. Trippy? Yup. And exhausting…
This one is different for everyone. What the Narcoleptic does is completely their own. An Automatic Behavior is the spontaneous production of often purposeless verbal or motor behavior without conscious self-control or self-censorship. As an example, sleep walking is an automatic behavior. Personally, I often respond in my sleep to questions without recollection of the conversation. Worse… I tend to get very angry and aggressive when this symptom mixes with the hallucinations. I become very aware that I am trying to sleep and I begin cursing and yelling at the offender – again, without recollection.
This is a phenomenon in which people (either when falling asleep or wakening) temporarily experience inability to move. It’s basically when the brain has woken up but hasn’t yet told your body. You’ll feel very heavy, like someone is holding you down. It is believed a result of disrupted REM sleep.
Conclusion? I’m more tired than you are.
Well, unless you too suffer from Narcolepsy or an equally severe sleeping disorder… I am more tired than you are. Please, I’m begging you… think before you try to one-up me with what errands or chores you had to do today and how you’re tired because of it. Living, being awake… that is my daily chore.
Look… I’m not trying to complain. This is the hand I was dealt, ya know? I am just looking for the same level of empathy. I accept that you’re tired. I know the feeling all too well. But accept that I’m doing all of the same things you are in life… while being ridden hard by a neurological sleep disorder for which there is no cure.