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Making a NOT TO DO List

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By Eunice Beck, RN

Note: Guest author Eunice Beck, a CFS and fibromyalgia patient, has been the Coping Corner columnist for A nurse for more than 35 years, she is no longer able to work in her profession
. Her article is posted with permission from [© 2002 Pro Health, Inc].

Today I finished getting my tax information ready for my accountant. I really need to be more organized about this. I need to learn to use the money management programs on my computer. But with brain fog, learning new things can be very difficult.

All of us know it is necessary to be somewhat organized to get through life. The changes in our mental function make necessary special types of organization, things like always putting your car keys or glasses in the same place.

We have to make certain that we write appointments and other important things in a central place where we can't miss them. I can't tell you how many appointments I missed until I got that area of my life squared away. I just couldn't accept that my previously excellent memory was "fogged in".

To do lists are a necessary part of our life. Still, we can't let them govern us. Recently, I heard a "life coach" on one of the talk shows. Many of her suggestions made sense. She talked about how she had been able to organize her busy life. However, one of the ways she managed to cope intrigued me. She said she made herself a NOT TO DO list.

Activities to Avoid

In the book I am currently reading, Fibromyalgia & Chronic Myofascial Pain, by Devin Starlanyl and Mary Ellen Copeland, the authors list "Activities to Avoid: staying in the same position for long periods, traveling extensively without a break, performing repetitive movements, exercising too much, immersing yourself in water less than 88 degrees Fahrenheit, becoming overtired, going without food, wearing high-heeled shoes, wearing tight clothing, doing heavy work, exposing yourself to electromagnetic fields for extended periods of time, smoking nicotine, or ingesting alcohol, salty food, junk food or caffeine, spending time with people who make you feel badly."

I think all of these belong on the not to do list, but the feeling I got from the "life coach" went even further. She implied that the things on her list were things she previously felt she "should" do.

By putting them on her list, she was giving herself permission to eliminate these things without feeling ambivalent or guilty. She included several of the things listed above, as well as things like ironing, re-doing chores her children or husband had done, etc.

I have made a "not to do" list for myself. Many of the things included are those which have already been mentioned, but there are others. For instance, I have never been very comfortable in pantyhose, so I rarely wear dresses. If I do, they are long so I don't have to wear hose.

Fortunately, where I live, the difference between everyday and semiformal is whether you wear your regular jeans, or your new ones. So casual and comfortable is the norm. But I would dress that way in any case. Even for special occasions, there are pant outfits that are appropriate yet comfortable.

Expanding the List

Another thing on my list is not volunteering or being manipulated into commitments that I know will be a strain on my energy and pain level. If you are not "retired" yet, you will learn how many friends and family will forget that you are not working for medical reasons and find things for you to do for them. It is a must that we learn how to say NO.

A very important thing on my "not to do" list concerns putting the needs of others before the things I need to preserve my best functional level. Of course, there are situations such as family illness, and small children where this may not be possible. However, we must learn to rank our health at or near the top of our list of priorities.

Negative "self-talk" is another thing on my list. When I pay attention, I notice that the more tired and frustrated I become, the more negative names I am calling myself; such as stupid, dummy, klutz, etc.

All of these names decrease my self esteem when I know that mistakes I make or things that I do slowly or incorrectly are more likely attributed to brain fog and the memory lapses that go with the disease. My spouse frequently reminds me that calling myself these names is not good for my mental health.

Putting myself in the situation where I have to hurry is another no-no for me. Hurrying, such as to get ready for an appointment, really adds to my fatigue level. I guess it must be the extra adrenaline that pumps into my system when I rush that makes me feel so exhausted and stressed.

Getting up a half hour earlier, or planning plenty of preparation time is worth the effort to be able to get ready at my speed. Some days I need rest breaks, other days I am able to get through the process without stopping. If I'm ready a few minutes early, I have a bit more driving time.

Even the chores around the house are done when I feel like doing them. I don't "freak out" if the laundry goes unfolded for several days. The floor gets vacuumed when it needs it. If all of the days dishes don't get washed until evening, I'm OK with that. I'm convinced that a layer of dust protects my furniture. My house is nowhere near filthy, but its not spotless either. It's lived in!

I think some of my friends worry that I have become a homebody. I usually only go out when I need to, and really don't visit much with friends or family except via the computer. So many people don't, and don't want to understand how we are feeling. I get tired of always saying I'm fine, but I don't want to become a constant complainer either.

If I were living alone, I would make more of an effort to be out with friends. But I am fortunate that my spouse is also my best friend. We enjoy doing the same things. We are both "night people", so our sleep time is the same. When I include our two wonderful feline companions, I have all the company I need. At home, I also have all those things I need to help provide my physical comfort.

Do you have a NOT TO LIST? If not, perhaps you should start one. It is yet another step toward health, both mental and physical. Take care and be well.

Author's Note: My articles and email responses are not being offered as those of a health care provider. The information and opinions included are intended to give you some information about your disease. It is very important that you empower yourself with knowledge and participate in your own search for care.

Any advice given is not intended to take the place of advice of your physician or mental health care provider. Always follow your physician's advice, even if contradicted by something written here. You and your physician know your situation far better than I do. Thank you and be well. Eunice