Having CFS can make you feel overwhelmed, out of control ... like you are walking on a emotional tightrope. There are days when you may have a little energy for awhile, and days when you can't even pull yourself out of bed. There are days when you can be optimistic in spite of your limitations, and days when you are so depressed you think medical science won't come up with anything that will help you. There are no pat answers, no ways to predict "good" times and bad times. A lot of energy can be wasted on feelings of anger, helplessness, frustration and guilt -- energy that could be used more productively. Here are some suggestions to fight the glooms and dooms of chronic illness. Maybe they can also help you.
Make rest periods a high priority, diligently scheduling them before and after any activity on your calendar. If there is a period of the day when you are likely to be at your best, set aside that time for your most demanding activities. Consolidate and simplify tasks. Typing uses less energy than writing. When cooking, double the recipe and freeze part for later. Organize your household by keeping all the equipment necessary for any task together in one area. Sit down whenever possible to conserve energy. Having a high stool to work at the kitchen counter can reduce fatigue and pain. By putting the dishes on an inexpensive wheeled cart or table you can save steps and energy when setting the table. Divide more difficult tasks into smaller parts, and take frequent rest breaks. Even on your best days, pace yourself. Set small short-term goals for yourself. Try to think of jobs that are compatible with your lowest energy level, such as writing a note to someone special, paying a bill, working on needlecrafts, or putting some pictures in a photo album. Work on one of these when you have very little stamina. You'll feel good knowing that you began a project in spite of your limitations. Don't feel guilty for not getting as much done as you think you should.
Apply for a handicapped parking permit. Most local libraries offer home-bound services. Use the Yellow Pages to locate needed items. Contact your local church concerning volunteer programs, such as "Friendly Visitor." Hire a high school student whose rates may be feasible to do difficult household and outdoor tasks. Check grocery stores in the area for delivery service. Keep phone numbers and menus handy from restaurants that deliver and from carry-outs. Eliminate unnecessary steps and save your energy for functions you must perform. The family service agency in your community will know whether household services are available and, in case of need, may help pay some of the cost for a limited period. Get in touch with the health, welfare and social agencies under various names that meet your needs. CFS can be very expensive, and often quickly depletes financial resources. Emergency assistance may be available from the Department of Social Services (or Welfare). You may be eligible for Social Security Disability, Medicare, or Medicaid Benefits. Although application procedures are frustratingly slow, find out if you qualify and how to obtain benefits.
People are able to accept you and what you can offer if you are open and honest with them. Simplify your life as much as possible and learn to say "no." Explain why you are not able to do what they request, and if possible, suggest something that requires less active participation. And if now is not the time for you to make commitments, maybe in the future things will be better. Remember, many people these days have limited their commitments for a variety of reasons, so don't feel guilty.
Tell people how they can help. Don't expect them to read your mind. If you want to be dropped off at the door instead of walking the extra distance from the parking lot, tell your friend. If you're going through a particularly difficult time, ask a friend to spend the day so you are not alone. People want to help, but they don't always know how. It is your responsibility to tell them specifically how they can help you. Don't try to hide the fact that you are very tired and can't do certain things. If you try to cover up, not only will you pay later, but your family and friends might have expectations of you that are unrealistic. It's hard to admit that you can no longer do as much for yourself as before, but it's important to ask for help when needed. Family and friends may have some of the same emotional reactions to the disease that you are having. They may be feeling shut out or frustrated by their inability to do anything to help. Sharing the emotional effects of having the disease will most likely help those close to you accept and adapt to your limitations.
Seek out people who have similar problems. Attend support group meetings when possible. Call someone with CFS when you really need to talk. Don't be afraid to cry, express your anger or your fear. When changes occur, particularly unwelcome and unwanted changes, it is normal to have those feelings. Depression often results when a person is unable to express angry feelings and keeps them buried inside. Depressed feelings can be triggered by chronic fatigue, pain, too much stress, fear of losing the interest and the affection of a loved one, a sense of loss about changes in one's body or life-style, or fear of possible future bodily or life-style changes. But in spite of all these "reasons," not all people with CFS get depressed or angry, and many learn to overcome such feelings when they develop. However, at times you may also feel the need to seek professional help. Find someone who is knowledgeable about and sensitive to issues related to long-term illness. It's important that you get support, encouragement, and understanding from those around you, but your family and friends are not trained to be psychologists or therapists.
Don't stop being involved just because it takes more planning and preparation. Creative coping means modifying or substituting activities that are pleasurable. If you find it too difficult to do gardening, switch to caring for a house plant or two, or frequently splurge on fresh cut flowers. Ask for help with the daily chores, so that you have energy for enjoyable activities. Make your surroundings as pleasant and as comfortable as possible.
Get out as often as possible, even if it's just lying outside on a lawn chair. Make tentative plans with your friends, discussing the need for their flexibility and understanding because of the unpredictable nature of your illness. Don't feel guilty if your health requires you to cancel out at the last minute. Let them know that it meant a lot to be included and you would like to be asked along again. If you are too fatigued to go to a movie theater, but would enjoy some company, ask your friend over to watch TV instead. Socializing balances the feeling of isolation.
Whenever you plan an activity, discuss potential problems. Contingency plans provide alternatives if problems arise. Rehearse what you would do if ... the car broke down on the highway ... overwhelming fatigue hits while you are shopping ... you missed connections while traveling. Taking risks can be stressful, but careful planning and preparation will reduce stress and make activities more enjoyable.
Balance rest and activity. You are usually the best judge of when to stop and when to keep pushing. Always stop before you feel exhausted. Begin to be health conscious about such things as diet and reducing stress. Contracting CFS should help you learn to take care of yourself in a healthy way. This may not be the first choice, but it is not a bad idea.
If you are having a lot of really bad days, eliminate unnecessary tasks, delegate the others. Use relaxation techniques, pamper yourself, listen to music, indulge in some comfort foods, light some scented candles, take a hot bath, read a book, unplug your phone and sleep. Crying can be therapeutic, but try not to feel sorry for yourself for very long. Keep a journal. If writing is too exhausting, use a tape recorder. It's a great way to release the emotions you are experiencing and an opportunity to later identify areas of personal growth. An important concept in stress management is to accept what you cannot change instead of constantly being frustrated over situations beyond your control. Have reasonable expectations for yourself and for others.
What's happening to you is not very funny, but looking for the bright side can make getting through difficult times more bearable. Family and friends hurt too when they see how much trouble you are having. Try joking a little, it might break the tension and put things into perspective. If you are so fatigued you spill something and make a mess, say, "I learned this from my children." If you are embarrassed because your intolerance to cold requires that you dress like Nanook of the North, tell friends you are trying to set a new fashion trend. Try to laugh instead of cry.
Do you have more time for family and friends? Are you more organized? Are your children more independent than other children their age? Are you finding strengths, new abilities and talents you never knew you had? Have your priorities become clearer? Are you better about communicating your needs and asking for help? Having CFS means a never-ending cycle of adapting and changing to ways that make life easier. So concentrate on your abilities. Even if your body is betraying you, use your mind to overcome obstacles. Remember, you are unique and have a lot to offer to others, even though your ability to do things has changed. Face one day at a time and feel good about yourself and how resourceful you have become.
Information for this text is from the brochure, "COPING SKILLS: How to Maintain Your Equilibrium in the CFS Balancing Act." Adapted from the Multiple Sclerosis Society and Arthritis Foundation by Judy Basso for:
Chronic Fatigue Syndrome Association of
P.O. Box 26639
Minneapolis, MN 55426
This text prepared and provided by:
National Chronic Fatigue Syndrome
and Fibromyalgia Association
P.O. Box 18426
Kansas City, MO, USA 64133
(Text may be reproduced and/or distributed provided sources are credited.)
Last updated September, 2000.
Any comments? Send them to Bill Jackson at firstname.lastname@example.org
Back to CFS Index Page