Melissa Kaplan's
Chronic Neuroimmune Diseases
Information on CFS, FM, MCS, Lyme Disease, Thyroid, and more...
Last updated January 1, 2014

Living With CFS

©1997 Victoria Livingston; Reprinted from Living Well

With CFS, the hardest lesson I have had to learn is knowing my limits by listening to my body and using common sense. It can be depressing to look at reality, but once you do this, you need to make lifestyle adjustments. The following are the things that I use to help me cope with my particular problems. I realize that many of the coping skills and tools I use may not be appropriate for other CFS sufferers, but I thought I would share them with you in the hope that you may find something of value.

I use a 12 x 12 calendar with the blocks to record my appointments and events scheduled for the month, then I can see at a glance how much time I will need to schedule to rest before and after the event. This tool is extremely important to me. I can't live without it!

I live on a comer of a busy main street and the noise of the cars going by all day disturbs my peace and sleep, so I use Husher ear plugs when I need rest. They block out most sounds but you can still hear your smoke detector, alarm, etc., in case of emergency.

Room Darkening Shades
Another must for me: these help me sleep better by darkening the room. They can be opened when you need light. Shades are also easier to clean than blinds. [Note: You can have existing curtains lined with a "blackout" liner which effectively darkens a room to almost total darkness.]

Answering Machine
A must if you are too fatigued to get up to talk but don't want to miss a call. The volume of the answering machine can be turned up or down.

I turn my phone off when resting. Caller ID is very good if you want to block out people who are annoying, or you get crank calls, or you just want to know the name and number of people calling you. You can also have your number blocked out if you don't want your name and number to show up on the other end.

Hand Held Shower
Very European, and extremely handy for washing your hair since it frees you from having to stand in the tub to take shower. You can even sit on a chair and wash yourself. It can be put back on its holder at shower level for the other family members who want to take a real shower.

Sunlight is especially important if you are housebound. Try to get as much sun as possible to keep from getting depressed. Keep your curtains open and try to sit for several hours in a room that gets a lot of sun' during the day. It helps keep the spirits up.

Room Temperature
This is individual. I am always warm, so I keep the house at about 68-70 degrees. It is easier to put a sweater on when you get cold than to cool off if you get hot.

Air Your Home
At least once a month have someone open all the windows in your house on a breezy day and air the pollutants out of your house. You will find it is much easier to breathe and the air is lighter.

Lists (Shopping)
Have a long list of groceries prepared by or for you. Include all the items you can think of and arrange them in a column. Mine is on the computer and we print it out on the printer about 25 at a time (a Xerox will also do). As the week goes by, mark off the items that you are low on. When it is time to go shopping you will not go crazy trying to remember what you need.

Lists (General)
I keep a special pad in which I make lists of things I need to do or any ideas I have about various things. This helps me to remember the things that I would otherwise definitely forget. This pad is kept next to my bed where I spend a lot of time.

Folding Chair
I carry a light-weight folding chair (the size of a large umbrella) with me when I know I will need to sit in a public area for a long period of time. If possible, get someone else to carry it for you.

Egg Timer
This is very useful! I use it to remind myself if something is on the stove, if I am on the computer too long, or to remind myself to watch a TV show. This will help you to remember anything that needs to be timed that you may forget!

Make them in advance and freeze them! Make more than you need when you have a "good day." Or get a family member to cook up a batch of something and freeze it. Use containers that can go from freezer to microwave. Get a microwave oven to reheat frozen foods.

Keep hearty canned soups with beans, meat, and vegetables on hand. Cans of mushroom and tomato soups are good to throw in a big pot with frozen vegetables and seasoning to make hearty casseroles and stews.

Minute rice is easy to make in the microwave - add equal parts of rice and water and heat.

Frozen dinners (though expensive and not too good) are also quick.

Low-cal cheese, cream cheese, yogurt, cottage cheese, butter and sour cream are all good substitutes for the fatty originals.

Be sure to take your extra food home when you go out to a restaurant so you can freeze it and get an extra of meal out of it. I buy two pizzas, and freeze them for extra meals. I freeze two slices in each zip lock bag. The slices can easily be heated in a microwave or conventional oven.

Some things are not our fault! Try not to go over your present weight. Set reasonable goals. A 10 (for me) is reasonable, others a 12, 14 etc. I have clothes in three different sizes: small, medium, and large. You know your own body! . Don't spend time weighing yourself daily, or getting depressed looking at yourself in the mirror (difficult, I know). At some point, we have to accept ourselves as we are and work with what we have to look as best we can under the circumstances. We are harder on ourselves than others, what we see is not necessarily what others see. I have found that Weight Watchers and Richard Simmons' diets are the most helpful but it is difficult to stay on "diets" when fatigued.

Frequent Small Meals
They keep the engine stoked in the body. When I'm out and in need of stamina, the combination of protein and carbohydrates gives me a little boost even at fast food places (eg. chicken sandwich, eggs and cheese for breakfast, a hamburger on roll, or spaghetti and meatballs).

I shop by catalogue and through the TV. I find that these are convenient ways to shop, since things are delivered to my door and I need not fight the malls.

Shopping (General)
Take frequent rest stops about every 15 min. Go with a list and give yourself a time limit. Keep the clothing light. Eat something either before you go or as you go along. This will help keep up your energy. If possible, get a basket or cart and put your coat and purse in it and lean against it as you walk. Park as close as you can to the store. Get a handicapped placard if you can.




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