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!

5 comments:

  1. I have frequent bouts of insomnia, but I know the reason I personally can't sleep is that I have horrible, horrible anxiety and depression that seems to peak at night. I have to sleep with earplugs and a mask because even the slightest light or noise keeps me awake with my mind churning, and my lovely husband has commanded that HE be in charge of our 4- and 2-year-old at night, and sleeps with the baby on his side, so he can hand her to me for a feeding.

    This is NOT to say that you need to try this, too! I'm just sharing my own struggles to feel rested. I feel exhausted and on edge ALL THE FREAKING TIME and my heart breaks each time I snap at my girls, but I literally do not have the inner resources to muster up patience and enthusiasm for my responsibilities. I just connected with a counseling service covered by my husband's work, but my first appt. is in three weeks and I need one now. I know a small part of this is my perpetual PPD, but happy thoughts and an occasional decent night's sleep and an hour to myself don't make me better. I totally echo your last paragraph about the powerful phrase "I'm so sorry--that must be so hard and I'm so sorry for your struggles." I hate it when people try and help you feel better by telling you you're just not trying hard enough to BE better.

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  2. I meant the paragraph in the middle that you reference again in the last paragraph. I promise I read the whole post!

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  3. Megan, I'm glad your husband is supportive and accommodating. It's so important for those closest to you to be understanding (it's not like we're doing it on purpose). I've learned that it's especially hard for husbands, who come with a built-in fix-it mentality, to be helpless in fixing the problem. My own husband gets up with our baby every morning because he knows if I get to sleep it will be between 4 and 6 am.
    Losing sleep is the worst thing you can do for all other aspects of your life. When you aren't getting such a crucial thing it's nearly impossible to take care of everyone or anyone else. That probably comes across as selfish to most people. All I can say is when you are truly starving, altruism is extremely hard to come by; a genuinely starving person is most likely to keep their scrap of food for themselves. A bad analogy, but one of the first things to get lost after even one night's poor sleep (and I'm going on years here) is the ability to think creatively, hence why sleep is so important before a test.
    My depression, like I said, I think is totally separate from my insomnia. But you don't usually find one without the other. They're no doubt related. I do, in fact, DO most of the things people suggest. I've tried CBT multiple times without success, although most doctors insist it didn't work because I wasn't doing it right or I didn't do it for long enough. I treat my depression and anxiety and see a therapist frequently (I'd absolutely recommend it, by the way, as being essential for mental health). I watch my "sleep hygiene" habits. But since my insomnia still persists, I have to conclude it is caused by something else altogether.
    I'm desperately hopeful that someone someday will be able to put a finger directly on what is causing my insomnia. In the meantime, the most I can ask is that people be understanding and patient with me.

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  4. Hannah I had no idea that you had insomnia. The only thing i knew is that you liked to sleep in. Even though I have no medical advice and I wont even try to give some. But I do believe that Chinese medicine is far advanced then western medicine. I have consulted with a Chinese doctor for a skin condition I have and It is nothing like what you are going through, it was nice for me to know that there are other sources I can turn to besides popping a pill for everything that seems to go wrong with our bodies. Know that you are in my prayers and I hope that something good can come from this next doctor visit. Hopefully you won't end up leaving the place wanting to punch the guy.
    Angeline

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  5. So, so, sorry for you. I know my experience doesn't hold a candle to yours (and is due to different circumstances), but in an effort to show my sympathy, I'll share that when I had my first child I was severely sleep deprived (much more so than with my second child, when I took anti-depressants, which helped my anxiety so I could sleep better, plus second baby didn't nurse nearly as much as first baby did). For 14 months, I was seriously on the edge of crazy and miserable all.the.time. So awful. You're right, sleep is so, so, so important. As a mother, I have come to feel it trumps all. Sometimes my 3 year old gets so tired (ever since dropping her nap) that she asks to go to bed without dinner because she's too tired to eat. It only happens once or twice a month and we let her because keeping her up to eat doesn't do anybody any good, and she just makes up for it with bfast in the morning. I really hope you can make some headway as you work with health care providers in figuring out what your body needs and how to make it happen.

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