like, a lot. like, i sleep every night for nine or ten hours, and i take usually two two-hour naps every day. that doesn't leave a lot of time for working, let alone exercising, cooking, or having a social life.
all my life, i've just figured i'm lazy. or had low blood sugar (eat!). or that my low blood pressure was causing my fatigue. or that i was depressed (but i don't *feel* depressed!). or that my snoring husband was keeping me awake. or or or or or. a million things.
finally, a good conversation with my new doctor (yay!) led me to a sleep specialist. at first, i was like, "what? i don't stop breathing when i'm sleeping. i don't snore. i don't fall asleep while i'm walking like those goats in the movies." turns out, it's a little more complicated than that. (surprise!)
you know how i remember my dreams most of the time? and they're usually vivid and complex and intense? yeah. that happens when you awaken straight from rem sleep. entering rem sleep almost immediately is a symptom of narcolepsy. i do that.
i've had an episode or two of cataplexy, most notably one in my teens (when the doc seems to think this started for me) in which i collapsed to the ground and, well, wet myself right in the middle of a walk down the path to pine ridge with chocolisa and a bunch of other folks. i was dumbstruck but never thought much more about it and have experienced only a couple of similar episodes since. but cataplexy = one common symptom of narcolepsy.
Attacks can occur at any time during the waking period, with patients usually experiencing their first episodes several weeks or months after the onset of EDS. But in about 10 percent of all cases, cataplexy is the first symptom to appear....Although cataplexy can occur spontaneously, it is more often triggered by sudden, strong emotions such as fear, anger, stress, excitement, or humor. Laughter is reportedly the most frequent trigger. (all quotes in this post are via)
the most-common symptom, of course, is excessive daytime sleepiness. did i mention that i sleep a lot? a lot.
People with EDS describe it as a persistent sense of mental cloudiness, a lack of energy, a depressed mood, or extreme exhaustion.
how many times have you heard me say i just feel out of it and want to go lie down? a lot.
sleep paralysis: lots of times i want to move (say, to acknowledge my husband leaving) and can't.
The temporary inability to move or speak while falling asleep or waking up also parallels REM-induced inhibitions of voluntary muscle activity. This natural inhibition usually goes unnoticed by people who experience normal sleep because it occurs only when they are fully asleep and entering the REM stage at the appropriate time in the sleep cycle.
and the hallucinations. my husband can tell you the zillions of times i used to get angry with him for playing music or the tv loudly while i'm trying to go to sleep, when we discover later that he'd been wearing headphones the whole time or hadn't had any media on at all.
these delusional experiences are unusually vivid and frequently frightening. Most often, the content is primarily visual, but any of the other senses can be involved. These hallucinations represent another intrusion of an element of REM sleep-dreaming-into the wakeful state.
and i can't tell you how many times i've been certain that he was in the room doing something, or that a car was driving by playing a certain song, or that something was happening that totally wasn't. i flippantly refer to my mostly auditory hallucinations as my brain radio, but apparently, it's a thing.
In most cases, symptoms first appear when people are between the ages of 10 and 25 but narcolepsy can become clinically apparent at virtually any age....Whatever the age of onset, patients find that the symptoms tend to get worse over the two to three decades after the first symptoms appear....If left undiagnosed and untreated, narcolepsy can pose special problems for children and adolescents, interfering with their psychological, social, and cognitive development and undermining their ability to succeed at school.
i've managed to work my whole life around jobs that permit me to work when i'm at my most alert and sleep when i'm not. even when i've had office jobs, i've never stayed in the office for more than four or five hours at a stretch.
To gain greater control over their symptoms, many patients take short, regularly scheduled naps at times when they tend to feel sleepiest. Adults can often negotiate with employers to modify their work schedules so they can take naps when necessary and perform their most demanding tasks when they are most alert.
and my social life. i always consider myself socially awkward, don't like going out, the wet blanket, blah blah blah.
people with narcolepsy may become socially isolated due to embarrassment about their symptoms. Many patients also attempt to avoid experiencing strong emotions, since humor, excitement, and other intense feelings can trigger cataplectic attacks.
avoid intense feelings? me? who won't see an intensely sad, violent, suspenseful, or otherwise upsetting movie? yeah. check, please.
Moreover, because of the widespread lack of public knowledge about the disorder, people with narcolepsy are too often unfairly judged to be lazy, unintelligent, undisciplined, or unmotivated. Such stigmatization often increases the tendency toward self-imposed isolation.
all i can say is that it is incredibly comforting to know that there's a reason i am the way i am. i'm not lazy. i'm not bored. i'm not depressed. i just can't always tell the difference between wake and sleep, dreams and reality. there are worse afflictions.