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Winter 2003  

Sleep and CFIDS — Sound Advice for Snoozing
By Sharon C. Clem

Sleeping problems are nothing new for people with CFIDS (PWCs). We have trouble falling asleep, staying asleep and getting good quality sleep. I have been ill for 18 years now and have found several things to help me sleep better. Let me share with you some of my discoveries.

It seems that the thermostats in most of our bodies have gone haywire, so it is better to try to stay a comfortable temperature than it is to get too hot or chilled during the night. Our body has to work too hard be become normalized again. Therefore, in order to minimize or prevent night sweats, I must have a cool-to-cold house, sometimes as low as 65 degrees in both the summer and winter.

When I lived in a two-story apartment, I had to completely close the heating vent to my upstairs bedroom in winter. A ceiling fan with a rheostat to make it run slower than usual helps in the summer. It stirs the air just enough to cool it without blowing directly on me. In addition to the fan, air conditioning is a must in warmer climates. A window unit is an extra bonus because its sound drowns out extraneous noises that can disturb us.

What to sleep on — and in

A mattress and box spring with good support, coupled with a three-inch-thick “egg crate” foam pad (a thinner one would not be as comfortable), help reduce aches and pains. Without the foam, I squirm and change positions often — sometimes every 10-15 minutes. Some people prefer the comfort and coolness of a water bed.

Several layers of lightweight covers are better than one thick, heavy layer. When you start getting too warm, slide down some of the covers, one at a time. As you cool off later in the night, you can start pulling them back up as needed. If you have a heavy bedspread, you may want to take it off at night, because the weight of it piled on your feet can be distracting and interfere with your sleep.

I use an electric blanket to warm up the bed and myself when I first get in. It’s very important for me to turn it off as soon as I go to bed, however. If I accidentally fall asleep before turning it off, I will wake up later feeling as though I am on fire, and will sometimes spend hours trying to cool down and fall asleep again.

The clothes I sleep in became a major concern after getting sick with CFIDS. No longer can I wear flannel, brushed nylon or even just long-sleeved nylon pajamas, because they smother me with heat. Short-sleeved, V-neck nylon pajamas seem to work best in winter.

I also had to change what I wear in the summer. I cannot wear my long, romantic nightgowns anymore — they are too hot and get all bunched up under me in bed. Cotton sticks to the sheets and makes it hard to move and turn over. Cute little baby doll nighties let my legs get too cold. Spaghetti straps, bows and ribbons are out, too, because they move around during the night and tickle me, causing me to awaken. It seems that a nondescript, nylon, knee-length sleeveless gown that is not too low-cut keeps me the most comfortable. Panties are optional. Men with CFIDS will have to experiment to see what is most comfortable for them.

I also make sure to launder the linens and nighties in detergents such as Ivory Snow, which contain little or no perfume. Bounce Free works in the dryer. It is too distracting to keep smelling the perfume and to breathe with a stuffy nose.

I have had to quit wearing jewelry at night, too. Just as I would be getting a little sleep, my pendant necklace would shift ever so slightly and disturb me. Or my pierced earrings, however small, would pinch or hurt my ears and interrupt my rest. Rings, bracelets and a watch felt bulky and in the way; now my wedding ring is all I can tolerate. It is more trouble to take my jewelry off at night and put it on again the next day, but not nearly as much trouble as losing sleep unnecessarily.

Keeping things quiet

I make sure my bedroom is quiet and dark by using room-darkening window shades with lined, dark-colored curtains. I ask my husband not to read in bed because his light bothers me too much. Wall-to-wall carpeting, good insulation in the walls and ceilings, storm windows or double-paned windows, acoustical ceilings and heavy drapes absorb or reduce sound.

In addition, a floor fan, exhaust fan in the adjoining bathroom or an air purifier will muffle extraneous noises. Fluffy balls of cotton in the ears help a little, too. If your bedroom is away from the street or a noisy neighbor, that’s a plus.

Ask your family to turn down the volume on the television and stereo, and to use headphones whenever possible. If your TV does not have a headphone jack, sometimes it can be connected to your stereo and the jack plugged into that instead.

Finding your rhythm

Try to establish a routine of going to bed and getting up at the same time each day, and, if possible, wake up naturally without the use of an alarm clock. Help your body’s circadian rhythm get established. If you sit up at night until you get drowsy, you might end up being awake most of the night. Even if you’re not tired, go to bed and rest some. Your brain will appreciate the peace and quiet.

Do not consume caffeine-laden products, such as tea, coffee, soft drinks or chocolate, for several hours before bedtime. Vitamins could also be too stimulating at night; experiment to discover the best time to take them. In addition, notice how much liquid you can drink from dinner onward without having to get up in the middle of the night to empty your bladder.

Try to wind down emotionally, too — avoid arguments, crying or stimulating conversation just before retiring. Spend some time earlier in the day letting your brain be idle to “free associate,” so that you do not spend hours doing it when you should be sleeping.

Do not go to bed too hungry or too full; both will interfere with your rest. If you are in pain, take something at bedtime; otherwise, you will only postpone the inevitable and will not sleep as well until the pain is relieved. Try to save some energy for sexual intimacy with your spouse. Not only will it benefit your marriage, it might even improve your sleep a little. If not, at least you will be more relaxed and happier while lying awake.

Since I sleep more lightly than I did before becoming ill, it seems I notice all the little things that go bump in the night. When I awaken with my heart pounding because I heard a strange noise, it is sometimes hard to reassure myself that I am really safe enough to doze off again. Items such as deadbolt locks, security lights with a motion detector, a telephone in the bedroom, a can of Mace by the bed, or perhaps an inexpensive burglar alarm system can help you feel more secure. The less you have to worry, the better.

In summary, do what you can to minimize distractions and to make getting a good night’s sleep a top priority. I think you will see a definite improvement. On those nights when you are still troubled with insomnia, try to relax and not worry about it. You will be surprised at how much more quickly you will drift off if you do not let it upset you.

Sweet dreams!
Sharon C. Clem lives in Chattanooga, Tenn.