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Tips for Caregivers

Caring for someone with CFS or FM can be a stressful experience. You may take on extra responsibilities, experience financial strain, feel frustrated and resentful at times, lose companionship, face uncertainty about the future, and experience both reduced socializing and sexual difficulties. 

Ways to Take Care of Yourself

Even with all the challenges brought by serious illness, there are many ways to take care of yourself. Here are seven to consider.

1. Maintain Your Health: This is the number 1 recommendation of experts on caregiving. To serve your loved one well and to avoid resentment and burnout, take time to get adequate rest, to eat well, and to exercise.
2. Accept Help: 
When people offer to help, accept the offer and suggest specific things that they can do. If your finances allow, consider paying for help in such areas as meals, housecleaning, and transportation.
3. Take Time for Yourself: 
Get a respite from caregiving by spending time away from the person who is ill, for example by pursuing a hobby. Give yourself an opportunity for leisure and enjoyment, a way to recharge your batteries.
4. Stay Connected: 
Avoid isolation and reduce stress by maintaining relationships with extended family and friends. This may mean getting together regularly for exercise or outings with friends, spending time with children or any other kind of socializing that keeps you connected with others. Although it may trigger guilt to be away from the person who is ill, it is essential to have periods of respite.
5. Consider Counseling: Be sensitive to signs of stress and consider seeing a counselor if you detect them. Signs that counseling might be appropriate include feeling exhausted, depressed or burned out, or over-reacting, such as by angry outbursts. 

Counseling can be helpful for gaining perspective on your situation or to explore communication problems. You might get help in individual sessions or in joint sessions with the person who is ill.
6. Grieve Your Losses: 
Just as people with CFS and FM experience many losses, so do those around them. They are deprived of part of the companionship the patient used to provide, as well as her work around the house and, in many cases, financial contribution. 

And, just as the person who is ill has lost the future she hoped for, so do you have to adjust your dreams for the future.
7. Create New Shared Activities: Serious illness may make it impossible for you to spend time with the person who is ill in the same way as before, but you can develop new shared activities to do together. 

The goal is to create occasions for shared pleasure, so that the relationship is strengthened and both ill and healthy members of the family don't come to see their relationships as just about illness and deprivation.

How Not To Be the Bad Guy

An issue that often comes up in the family members course offered in the self-help program is how to best communicate to the person who is ill that she is about to do something that will intensify her symptoms. In the words of one husband, "I feel like I have to be the bad guy who says 'you should do this' or 'you should not do that'. And that's not always appreciated."

One way to handle this sitution constructively was suggested by a husband who reported that he and his wife had a discussion at time "when she was NOT feeling stressed, tired or overdrawn."

The focus was on what the wife wanted her husband to do and say "when she was moving forward with something I suspected was overdrawing her energy or heading her toward a crash." The wife gave her permission for her husband to remind her twice if he thought she was in danger of overdoing.

He provided an example. The couple asked a friend if she wanted to go to dinner for her birthday. The friend said yes and "my wife said, 'and do you want it to be just us or should we arrange a group to celebrate'.

At that point, I stepped in and said that I thought it should be just the three of us, because of what had happened the last time she arranged an outing for a friend. Coordinating a half dozen people with meal, tickets, and arriving on time was way too much. My life said, 'Oh, right!' and thanked me later."

"The key is asking the person with CFS what they want you to do and getting permission at a time when the person is in a really good, clear state. At least that has worked for us."


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