Share Your Journey | Drowning in Sleep

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One would think that my mother chose one of those underwater birthing experiences or a birth assisted by dolphins when she had me…since I’ve spent my entire life in or under water.

Literally? No, figuratively—living in and under water is my analogy for how it feels to live with hypersomnia. While most of the world sleep in shallow water at night and pop up onto the dry land where they stride about all day, I sleep in the depths and only make it to more shallow water during the day, still over my head though. I feel as though the vast majority of people live on land and only sleep in the water; whereas I live in the water and seldom make it to land. In other words, most people’s natural state is wakefulness with periods of sleep, and my natural state is asleep with periods of wakefulness.

I am not exaggerating when I say this: that I can probably only remember two days of my life spent on dry land. And waking up feeling rested?—Fewer than a handful of times. Even Ritalin (methylphenidate) or Provigil (modafinil) just helps keep me in shallower waters: if I’m having a more alert day and the medication is working well, it allows me to wade around in thigh-deep water and relieves me from having to swim or tread. If I’m having a more sleepy day or the medication is not working well, it only helps me to tread or swim a little faster.

So, here’s me at work next to a “normal” person—she is sitting or standing on dry land working away and I’m next to her swimming to keep up and treading to keep my head above water (in other words, to stay awake and cut through the brain fog) while attempting to do the same job. It’s a constant struggle. No wonder I’m slower and distracted.

In addition to having idiopathic hypersomnia (IH), my circadian rhythm is set much later than other peoples’. In the depths of the ocean where I sleep, the sun only penetrates to those depths at around 10 am or later. Even waking up then is a struggle, and I set three alarm clocks. I sleep in the deep end OF THE OCEAN, and it takes a long time and a lot of work to swim to the surface and then close to the shore every day. My alarm clocks (when I hear them and don’t turn them off in my sleep) are like the crash of the waves on the shore to let me know in which direction to swim. If they keep splashing and crashing and I keep swimming, I can usually make it to the surface in 30 to 60 minutes.

While I am attempting to wake up, here is one problem: In the nanosecond between the thought “I need to get out of bed” and carrying out that action of getting out of bed, I fall back to sleep. It is difficult to sustain an awake state long enough to act on the intention of arising. This is when I especially feel that I am drowning in sleep—I just keep slipping back under the surface.

Even in my daytime, the water level is deep. When I sit in a chair, couch, or car, I’m under water (asleep) in 20 to 30 minutes. Even when I am standing up, I am still in water over my head, meaning that I’m constantly treading water or else I’ll slip under. To get through college, I had to jog in place while standing at a lectern (that held my books and notes) because I kept falling asleep standing up while studying. Unfortunately, my car requires that the driver be seated while driving, so it’s short trips for me, or I have to take Ritalin to drive more than half an hour.

Stimulants and medications, however, do not mean smooth sailing for me—I can barely tolerate them, and certainly not every day. All of them make my Reynaud symptoms worse, dry my eyes, and give me very unpleasant side effects. If I were to drink even half a cup of coffee, my heart would race, my hair stand on end, and my mind race; the words on the computer screen would float away; I would sweat and have heart palpitations; my dry eyes would dry out even more. Needless to say, I don’t ever use any caffeine. When I take Ritalin, I get the same side effects plus I shiver all day long. People are constantly offering to get me a coat, sweater or blanket. (Same thing happened to my daughter when her doctor tried her on it for her ADHD.) On the rare occasions that I take modafinil, such as when I have to drive for several hours, (something I avoid as much as possible), I will not only have the side effects, but I know I’m in for a night of being tossed in the surf. It’s not that I can’t sleep, it’s just that I fall asleep and wake up every few minutes all night long and am most miserable the next day. The waves toss me ashore, then pull me back out to sea; toss me ashore, then back out to sea, and on it goes all night long. The same thing happens if I take a second, afternoon, dose of Ritalin or take Ritalin two days in a row.

The tides in my ocean are quite unique. Instead of cycling through two high and low tides twice a day as our planet’s oceans do, my high tide rolls in around midnight, pulls me out to the deep (sleep), and doesn’t begin to ebb for 12 to 14 hours. If I start my day earlier and swim to the surface near the shore before ebb tide, the water is deeper and rougher and stays that way all day—no low tide for me!

Often, for no reason that I can discern, a riptide or undertow will roll in in the late afternoon or at seven in the evening for an hour or two. At times I am able to keep my head above water, and at other times it sucks me out to sea. The late afternoon undertows are erratic, but the 7 pm riptides will run for weeks at a time.

Many insomniacs who have said to me, “I wish I could sleep like you do!” To them I say wryly, “Come on in, the water’s fine!” (If they only knew!)         

Lisa R

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