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Having CFS can make you feel overwhelmed, out of control . . . like you are walking on an
emotional tightrope. There are days when you may have a little energy for a while, 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. Organize
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.
Take Advantage of Community Services and Resources
Apply for a handicapped parking permit. Most local libraries
offer homebound services. Use the Yellow Pages to locate needed items. Contact your local
church concerning volunteer programs, such as a "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 delivery 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.
Be Honest With
Yourself and Others
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.
Reach Out To Family
and Friends
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 do 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.
Expand Your Support
Network
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
lifestyle, or fear of possible future bodily or lifestyle 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.
Find Ways To Do Some of The Things You Enjoy
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.
Plan Things To Look
Forward To
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.
Anticipate
Problems and Their Solutions
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.
Start Listening
To Your Body
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.
Accept Your Limitations
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.
Keep Your Sense
of Humor
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 tolerance 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.
Look
For the Positive Aspects of What Is Happening To You
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.
Adapted from the Multiple
Sclerosis Society and Arthritis Foundation
by Judy Brasso for the
Chronic Fatigue Syndrome Association of Minnesota
P.O. Box 385036
Minneapolis MN 55438
(612) 943-2769
* This information may be reprinted without written permission
provided the sources are credited.* |