Midway through last semester, I started feeling really ADD. Now, I don’t have ADD, but before you go accusing me of being disrespectful to those who do by calling my memory lapses, inability to focus or concentrate, and to simply “get shit done” ADD when it isn’t–don’t. I have to defend myself and say that it is honestly the best way I can describe how I felt and how I am currently feeling. I do have friends who are actually ADD, so I’m not drawing this description of my dysfunctional self completely out of thin air. Anyhow, I started feeling that way last semester but realized I was almost done, so I just rode it out until Christmas break, feeling like shit the entire time.
I slept an absurd amount over break, visited a friend in Minnesota, and then returned for round two of sophomore year. Well, I started to feel worse somewhere around, oh, I don’t know, the first week I was back. And, no, it had nothing to do with “the stresses of school and college life.” I just couldn’t focus and because I couldn’t focus, I would get anxious about life. So, being a person who has experienced moderate to severe mental health problems in the past, I immediately went to my school’s psych services.
Of course there was waiting list, so I was placed on that and got into see someone mid January. We talked. He used to be a professor of mine, so that part was slightly awkward. I withdrew from a class that was giving me trouble and we talked some more. Then one day I think he finally understood how horrible my concentration was and how I’d had problems with it in the past (since junior year of high school). But he told me there was no way I could be ADD, because that had to start in childhood, and I had traditionally been able to concentrate really well when I felt okay. I then brought up my messed up sleeping schedule, where I can’t sleep well at night and I fall asleep all day long, everyday. After that, he decided to refer me to see one of the psychiatrists who works at our school part time, because the sleep thing was taking its emotional toll, and he wondered if perhaps there was something that could be done about it, or if there was a problem that needed medication.
Well, I met with the woman and held absolutely nothing back about my entire medical history. I actually tried to tell all. I was completely expecting her to say what some doctors have told me in the past (mainly referring to shitty endocrinologists here–I’m hypothyroid): “you’re anxious, you’re depressed, you’re bipolar, now go take some psych meds and all will be well.” Don’t get me wrong; it is absolutely okay to be any of these things. Mental illness is not a personal weakness and these are real illnesses that cause real problems. I’ve even been depressed before (twice) and I know what’s it’s like and that it’s nothing to be ashamed of, but here’s the catch: I know what it’s like and therefore I know when I’m NOT depressed. So I told her I was fine: “I love my school, my friends, and my major… I’m genuinely happy right now. I’m just dealing with some really shitty sleeping habits."
But instead of just assuming I had a mental health condition, she starting asking me more about my sleep and said my poor sleeping schedule seemed to be something more than a habit, from what I described to her. She also said that the people who come to her with an emotional problem or mood disorder tended to have very erratic sleeping patterns:
“They’ll sleep fine one month, not sleep the next, and then be unable to get out of bed… but you just seem to have consistently shitty sleep.”
I couldn’t argue with that. It was all very true. My sleep has always been horrible, it was just especially horrible now and getting in the way of the difficult course load I had signed up for this semester. She then said she wasn’t going to see me again until I had a sleep study done. She gave me a recommendation of where to go and told me she thought I had some sort of sleep problem that needed to have checked out.
I was devastated at this point, because I just wanted help immediately and I knew when I called the sleep clinic that I would have to wait a while to get an appointment, in order to have the sleep study done, in order to get the test results, in order to (maybe) get treated.
But seeing that I was not getting treated in any other way, I made the appointment, got in quickly, and spoke with a sleep specialist. I had filled out a questionnaire beforehand. In addition to that, he asked me more questions in person, all of which I responded to as best as I could. Then, he said something to me I’d a) never thought about and b) never though I would ever hear:
“How old are you again?”
“Twenty one.”
“Well, that sounds about right. I think narcolepsy is real possibility, especially considering this is the most common age that it is diagnosed.”
“Really? But that doesn’t sound like me.”
“It’s caused by a deficiency of a chemical in the brain, hypocretin, which helps maintain alertness.”
He then prescribed two tests: one to make sure I can breathe okay at night and don’t have excessive limb movements (the polysomnogram, PSG) and one to test for narcolepsy (the multiple sleep latency test, MSLT).
I left dumbfounded that narcolepsy was his suspicion. I then began to consider it. Cataplexy didn’t really sound like me, although it’s possible it could be mild and something I just haven’t picked up on yet. The rest of the symptoms, however, really seemed to fit. Maybe, a big part of what I was dealing with was simply SLEEPINESS. It would make sense. I know I’m not currently sad or depressed and that lack of sleep can fuck over your concentration… so maybe, just maybe, it fit. Not to mention I was falling asleep all the time and taking multiple naps a day. You see, narcolepsy is so much more than simply falling asleep at random. A huge part of it is simply excessive daytime sleepiness (EDS), which I am overly confident I have.
There’s other stuff too, mainly going in to REM sleep at inappropriate times, more specifically right after you fall asleep. This comes along with creepy hypnagogic hallucinations or dreaming immediately upon dosing off, and sleep paralysis. There’s also this thing called automatic behavior where you do every day things while essentially being asleep. But the biggie is ALWAYS feeling tired and NEVER feeling rested, even after a supposedly “good” night’s sleep. But ironically, people with narcolepsy don’t typically sleep well during the night. First of all, they tend to have insomnia (check!) and then wake up multiple times during the night, so they don’t actually sleep any more than most people do, which is why they are always so sleepy during the day. It’s basically a disorder where the boundaries between wakefulness and sleep are terribly fucked up. It’s also neurological disorder, and has no cure. So yes, it’s a chronic, invisible illness.
So needless to say, I am counting down the days until I get checked into the clinic for my sleep study. I just want to know what’s wrong with me, so it can be fixed. I am 99% sure it’s a sleeping problem of some sort…narcolepsy or not.
I’m really bad about praying… to the point where I usually never do it. But I’m definitely praying about this. Having screwed up sleep messes up your entire life. I just want to feel better!
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