Words to Live and Write by

I am willing to fall Because I have learned how to rise.

I craft Love from heartbreak, Compassion from shame, Grace from disappointment, Courage from failure.

I am among the brave and brokenhearted, and I am rising strong.

(credit to Brene Brown)

Tuesday, May 14, 2013

Living with Insomnia

I am an insomniac. A real, true, chronic insomniac. For five six years I have not been able to sleep easily, naturally. Most nights I get maybe two to three hours of sleep, if I'm lucky. Many nights I can't sleep at all.

People in general simply do not understand this. When I say that I am an insomniac, people, especially doctors, seem to have a limited number of responses.

Some people say, "Maybe you don't need to sleep." They're referring to those  geniuses who accomplished marvelous things because they truthfully didn't need to sleep more than a few hours a night. They look to these examples and, judging me by the same standard, assume I am simply complaining. If I were stronger, more motivated, or had more of whatever quality they judge I am lacking, I would magically have the energy to do amazing things while the rest of the world is sleeping. But I wish they understood how frustrating it is to be so desperate for sleep but never able to get it, even while everyone around you sleeps easily and deeply enough to wake up feeling refreshed in the morning. I can't even remember what refreshed feels like. If I didn't need to sleep, if I truly felt just fine without sleeping, I probably wouldn't be complaining, I probably wouldn't label myself an insomniac. If I were just a chronic whiner, a hypochondriac, and not a genuine chronic insomniac, I would probably have a whole grocery list of things wrong with me.

Some people, especially medical professionals, say, "You don't look like an insomniac." And I want to throttle them and tell them, "You don't know what it's like to live in my body!" Sure, I might look okay--I don't have those nasty premature signs of aging that some people do--but if you look closely, you might see: after nights of no sleep, my eyes are bloodshot and so dry they water excessively and my makeup will run (that's if I even have the energy to put makeup on). My body, while relatively thin, is soft and out of shape because I simply never have the energy to exercise. I am tired and worn down, all the time, and while I might look okay, just watch for those tell-tale signs of exhaustion, e.g. how slowly I move, how my eyes glaze over because I can't think straight, how little I accomplish because I am so drained from the beginning of my day, the way my muscles start to spasm so it looks like I am shivering because my entire body is screaming that it needs to rest.

Too many people say, "Oh. Well, whenever I can't sleep, I just [fill in the blank: drink chamomile tea or green tea or warm milk, read a book, listen to a book on tape, write a book, write about my thoughts and worries, take melatonin or valerian or coffea crudea or other herb/s, eat bananas, make sure I don't eat carbs or fat or protein before bed, make sure I don't go to bed with a full stomach, make sure I don't go to bed on an empty stomach, go to bed early, stay awake until I feel sleepy, get up early, cut out naps, take a nap, do yoga, exercise, meditate, catch up on chores, do something enjoyable, etc. etc.]." And want I to explain "whenever I can't sleep" is so very different from "I can't ever sleep." And really, after five six years, do they honestly think I've never tried these things? They think they can "fix" my problem in the same way they fix their own "problem."

Mental health professionals will try to force me into "cognitive-behavioral therapy" (CBT), which undoubtedly will fix my insomnia. Here is what CBT is: You deny your body sleep (already happening, no forcing necessary there) until you feel "sleepy," which, in an insomniac's vocabulary is equivalent to "passing out." After days of little to no sleep, you are finally ready to "regulate" your sleep. This means you go to bed when you feel "sleepy," but you only stay in bed for twenty minutes; if you are still awake in twenty minutes, you leave your bedroom and do something active until you feel "sleepy" again, then repeat until you are unconscious. But if this doesn't happen by 5 hours after you first went to bed, you must force yourself to stay awake until the next night, then repeat. Once you are so sleep-deprived that you are literally passing out when you first go to bed, you limit yourself to 5 hours only for at least a week. (Note that a healthy individual sleeps a bare minimum of 7 hours a night, ideally 8-9.) Then, if you can keep this up for a week, or more depending on the program, you are allowed to increase your sleep time by half an hour. You can increase your sleep time to up to seven hours a night. But if, at any time, you begin having difficulty falling asleep again, a.k.a you are not so sleep-deprived that you pass out at bedtime, you must begin the program all over again. You will never be allowed more than 7 hours a night. It is strictly forbidden to take naps, sleep in, or go to bed early, ever. You know, because this sounds like such a pleasant way to live.
Some people, especially doctors, say, "That's because you're depressed/anxious." And I want to say, "Yes, I am depressed, and I am anxious. But couldn't that be the result of my insomnia, and not the cause of it?" They can pump me full of any variety of anti-depressants, anti-anxiety pills, and sleeping pills, or send me to frequent, expensive therapy sessions, but it won't fix my depression or anxiety because it doesn't fix my insomnia. But just try telling a doctor that, I dare you. They'll tell you that you've got a bad attitude, that you're not doing it right, and that that must be the real reason for insomnia.

Some few, precious people, simply say, "I'm so sorry. I hate it when I can't sleep. That must be so hard." In those cases, I just about break into tears saying, "Yes, yes. It is so hard! Thank you for not judging me or trying to fix me." 

Don't get me wrong, I want my insomnia to be fixed. In the same way someone with a collapsed lung or a broken leg wants their problem to be fixed. What I hate is being told "It's all in your head; we ran a bunch of blood tests, and there's nothing wrong with you; there's nothing wrong with you except you can't sleep; there's nothing wrong except you say you can't sleep." (This last one is so annoying. I say I can't sleep? It's like they don't even believe me.) This would be the same as telling that person with a collapsed lung, "We ran a bunch of blood tests, and there's nothing wrong with you except you can't breathe." Or telling the person with a broken leg, "There's nothing wrong except you say you're in incredible pain and can't walk (but since the bone isn't actually showing, as far as we can tell it's perfectly fine)." 

Alright, so this rant doesn't seem to have a pretty little point that I am trying to make. This is heavy on my mind because I get the pleasure of seeing an insomnia specialist next week, who will explain to me again why cognitive-behavioral therapy is so much better than drugs.

 I guess I just want to beg you to please be considerate of poor insomniacs. If we're too tired to make fabulous dinners, go out with friends or join playgroups or even go to church, finish novels, join a gym, or even explain why we're so tired, please don't take it personally. When we say, "I couldn't sleep last night," by way of explanation, please don't assume this was a one-night thing and we can get over it as quickly as normal people could. Unless you number among our fellow chronic insomniacs, you just can't understand how tired and miserable we are.

Leave your thoughts and comments, please!