TOUCHED BY LYME: Sleep advice "for the rest of us"
Guest column by Toni Bernhard, author of “How to Be Sick: a Buddhist-inspired Guide for the Chronically Ill and their Caregivers.” She blogs about chronic illness on the Psychology Today website.
Sleep Hygiene for the Rest of Us
Chronic pain and illness play havoc with “good night’s sleep” advice.
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1. Go to sleep at the same time every night.
Nice idea. Unfortunately, pain and other symptoms—not the clock— dictate when I get to go to sleep.
2. Don’t use your bedroom for any activities other than sleeping or sex.
The strictest version of this rule includes a ban on these activities: talking on the phone, listening to the radio, watching television, reading, using the computer. But then where would I be writing this article from? My bed is my office, my entertainment center, my dog playpen, my dining room.
Even the less comprehensive lists include, “Don’t use your bed for doing work.” I like to joke with my husband how I wrote How to Be Sick in a four-foot-square space. It would have been a two-foot-square space, but my printer is four feet from the bed—still close enough to reach with a good long arm stretch from the bed.
3. Don’t nap during the day.
I can’t get through the day without a nap, not because I’m sleepy but because my body breaks down the way a body breaks down when you have the flu. I have absolutely no choice here. I consider it a small victory if I only need one nap. I’ve been known to need four.
4. Exercise.
Oh yeah. If it were only possible…
5. Move the TV out of the bedroom.
Good idea—but maybe not for the rest of us. Without the TV in the bedroom, I’d not have seen a single movie released since 2001, the year I got sick.
6. [My personal favorite]. If you don’t fall asleep in 15-20 minutes or if you wake up in the middle of the night and don’t fall back asleep in 15-20 minutes, get out of bed, go into another room, do something non-stimulating for a half hour, and then try again.
Okay. First, I NEVER fall asleep in 15-20 minutes. It takes me longer than that to get comfortable. Then once I’m comfortable, I have to wait until the symptom parade calms down. On a good night, I’m asleep after about 45-60 minutes. On a bad night…we’ll, let’s not go there.
Second, (and this may be the only piece of valuable advice in this article), I’ve discovered that I feel much better the next day if I don’t get out of bed when I wake up in the middle of the night and can’t get back to sleep. I “fake sleep,” meaning I lie in bed in my usual sleep position and pretend to sleep. I’ve tried both—getting up v. fake sleeping. For me, the latter makes the day to come much more bearable. In fact, I’ve become quite adept at fake sleeping. In the upper left is a picture that perfectly depicts this art form!P.S. Fake napping can also be easily mastered and comes in handy on days when symptoms prevent real sleep from occurring. In my household, we call this phenomenon a “shutdown,” as in “all systems are shut down, even though no sleep is taking place.”
© 2012 Toni Bernhard
Toni Bernhard is the author of How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and their Caregivers, winner of the 2011 Gold Nautilus Book Award in Self-Help/Psychology and named one of the best books of 2010 by Spirituality and Practice.
She can be found online at www.howtobesick.com
I do the fake sleeping routine as long as the pain is not too bad. Last night I got 3 hours sleep and then woke up wide awake. Too painful to lay in bed so I planted tomatoes in the cool greenhouse instead. Since I have had Lyme I am very sensitive to hot and cold.. it is so weird to wear a coat when it is 65 degrees outside. I crave heat then overheat in an instant , totally weird.
THANK-YOU. This is the best description of my sleeping situation that I have seen to date! Lyme since 1979, we believe -diagnosed in 2006.
Amen to your comments !
my grandmother born in 1880’s recited a poem ably ” the wee little froggies who wouldn’t go to sleep” and I often think of a line that goes “can’t sleep, not a wink.” the grown. up frogs don’t understand, but I do. I am expert at faking sleep, except for when the pain is too much.
not ably but about
Well said. I see all about sleep hygeine on TV and laugh. Thank you.
Have you ever tried melatonin or a sleeping pill Ambien, Some Dr. will give you a Rx for Ambien
I get so mad when I see this recommendations. Of course I tried every one when I started having trouble sleeping 18 years ago. I feel that disordered sleep is at the root of most of our symptoms.
I USE THE BARRY LONG TECHNIQUE
ditto ditto…fake sleep…what a great way to describe it!
I can completely relate to this article. Sometimes, I am so frustrated by my symptoms that I can’t fall asleep until 2 in the morning. Then I wake up an hour later knowing that I have to get up soon and I just end up staying awake all night.
I’ve been known to go months with 2-4 hours sleep per night. As far as not doing anything in the bedroom? I don’t watch much TV, but I need to lie down when I get home. Since I can’t sleep, I like to be on the computer at least researching or doing something that might be able to help me in the future.
You have to take a sleeping pill . Sleeping in my opinion is essential for getting well .
I’ve had Lyme for 4 months now and started treatment 3 weeks ago as I was just tested and tested positive .
Sometimes I feel like I’m getting better , then I get achy achy pain in my muscles and exhausted . But my joints are better so the Dr said I’m responding to the antibiotics
If I didn’t take a half an Ambien I’d be so much worse — you need your sleep .
My psychiatrist gives it to me . With Lyme , it’s a medical necessity
Everything you say about sleep is right on. I was diagnosed with lyme a year ago, took the initial antibiotic treatment, suffer with fatigue and have learned from experience all the same sleep tips that you share. Thanks for sharing