Living a Healthy Life with Chronic Pain (6 page)

Successful managers typically keep lists of what they want to accomplish. Do the same, and check things off your to-do list as you complete them. If you are not checking off many things, perhaps your plan was not realistic. Along with your to-do list, make daily notes about your actions, successes, and failures. Later these notes may be useful in determining a pattern to use for problem solving.

For example, our stair-climbing friend never did her climbing. Each day she had a different problem. One day, she didn’t have enough time. Another she was too tired. On a third day, the weather was too cold, and so on. When she looked back at her notes, she realized she was coming up with excuses every day. She began to realize that the real problem was her fear of falling with no one around to help her. So she altered her action plan. She decided to use a cane while climbing stairs, and to climb when a friend or neighbor was around.

At the end of each week, check in to see if you are closer to accomplishing your goal. Are you able to walk farther? Have you lost weight? Do you have more energy? Taking stock is important. You may not see progress each day, but you should see a little progress each week. If you are not accomplishing what you want to by the end of each week, it may be time to revisit your plan and use your problem-solving skills.

When you are trying to overcome obstacles, your first plan may not turn out to be the most effective one. If something doesn’t work, don’t give up; try something else. Modify your short-term action plan so that the steps are easier. Give yourself more time to accomplish difficult tasks. Choose a new action plan, or check with your consultants for advice and assistance. If you are not sure how to go about this, go back and read
pages 24
–
27
.

The best part of being a good self-manager of your pain condition is the reward that comes from accomplishing your goals and living a fuller and more satisfying life. However, don’t wait until this ultimate goal is reached to celebrate your progress. Reward yourself frequently for your short-term successes. In fact, build these rewards into your action plan. For example, decide not to read the paper or your favorite magazine until after you exercise. Thus reading becomes your reward. One self-manager we know buys only a few pieces of her favorite fruit at a time. She has to walk the half mile to the supermarket every day or two to get more. In this way, the fruit becomes the immediate reward for her exercise. Another self-manager who stopped smoking used the money he would have spent on cigarettes to have his house professionally cleaned. There was even enough left over to go to a baseball game with a friend. Rewards don’t have to be fancy, expensive, or calorie-laden. Focus on healthy pleasures that add both enjoyment and benefit to your life.

Now that you understand the meaning of self-management, you are ready to begin learning to use the tools that will make you successful at it. The rest of the book is devoted to teaching you about these tools. Your toolbox will include practical
strategies to help you succeed with exercise and movement, nutrition and healthy weight management, pain management techniques, good communication skills, family and intimacy issues, decision making about the future, and finding resources and information. We talk about medications and their uses in
Chapters 15
and
16
.
Chapter 18
contains information on some of the more common chronic pain problems and
Chapter 19
is about chronic angina pain. If your specific pain problem is not covered, we are sure that this book can still be helpful for you. Fortunately, most self-management skills are applicable to many types of chronic pain.

My Action Plan

In writing your action plan, be sure it includes all of the following:

1. What you are going to do (a specific action)
   
2. How much you are going to do (time, distance, portions, repetitions, etc.)
   
3. When you are going to do it (time of the day, day of the week)
   
4. How often or how many days a week you are going to do it
   

Example: This week, I will walk (what) around the block (how much) before lunch (when) three times (how many).

A
N IMPORTANT ASPECT OF BECOMING A SELF-MANAGER
is knowing how to find help when you need it. When you seek help, you are no longer a victim of your condition; you are a good self-manager. Start by evaluating your condition. As you do so, you may discover that there is a gap between what you can do and what you want to do. If so, it may be time to get help so you can do the things that are most important to you.

As we begin to look for help, most of us start by asking family or friends. Sometimes this can be difficult. We are afraid that others will see us as weak, and our pride gets in the way. The truth is that most people want to be helpful but do not know how. Your job is to tell the people around you what you need. Finding the right words to ask for help is discussed in
Chapters 10
.

Unfortunately, some people either do not have family or close friends or find it difficult to ask them for help if they do. Sometimes family or friends cannot offer all the help that is needed. Thankfully, we have another wonderful resource to turn to: our community.

Finding resources can be a little like a treasure hunt. As in a treasure hunt, creative thinking wins the game. Finding what you need may be as simple as visiting a website or looking in the telephone book and making a couple of phone calls. Other times it may take sleuthing. The community resource detective must find clues and follow them. Being a good detective even involves starting over when a clue leads to a dead end.

The first step is to define the problem and then decide what you want. For example, suppose you find it difficult to prepare meals because standing for a long time is painful. After some thought, you decide that you want to continue cooking for yourself. You could do this if you could cook while sitting. Your treasure hunt involves figuring out how to do this.

You look at kitchen stools and soon determine they will not work, so you decide that you need to redesign the kitchen. Now the hunt begins in earnest. Where can you find an architect or contractor who has experience in kitchen alterations for people with physical limitations? You start with the phone book, which has pages of ads and listings for architects and contractors. Some advertisers say they specialize in kitchens, but none mention designing to accommodate physical limitations. So you must call and ask. After calling a few contractors, you come to realize that none are experienced in kitchens for the physically limited. Next you turn to the Internet. You find a company that seems to be just what you need, but it is located more than 200 miles away.

Now what? You could contact the rest of the contractors listed in the phone book, but this would be time-consuming. And even if you found someone suitable, you would still have to check references.

Who else might have the information you need? Maybe someone who works with people with physical disabilities would know. This opens a long list of possibilities: occupational and physical therapists, medical supply stores, the local Center for Independent Living, and nonprofit organizations that understand pain problems, such as the Arthritis Foundation or Arthritis Society. You decide to ask a friend who is a physical therapist. Unfortunately your friend does not have any ideas about local contractors who do this sort of work. So now what?

In addition to formal organizational resources, there are people in every community who are natural resources. These “naturals” or “connectors” seem to know everyone and everything about their community. They tend
to be folks who have lived a long time in the community and have been closely involved in it. They are also natural problem solvers and enjoy being helpful, so people often turn to them for advice. It could be a friend, a business associate, the mail carrier, your physician, your pet’s veterinarian, your hairdresser or barber, the checker at the corner grocery, the pharmacist, a bus or taxi driver, the school secretary, a real estate agent, the chamber of commerce receptionist, or the librarian. Sometimes the natural will taste the thrill of the hunt and, like a modern-day Sherlock Holmes, announce that “the game is afoot!” and promptly join you in your search. You are about to start researching local organizations when you start to think about all the people you regularly come in contact with and realize that some of them are naturals.

Say the person in your community who fills this role is a friend who runs a local business. You tell him about your problem the next time he comes to your house and he tells you about a contractor whose wife uses a wheelchair. He knows this because the guy just did a great job on the kitchen of one of his co-workers. You call the contractor and find he is perfect for your situation. Problem solved!

Let’s review the lessons from this example. The most important steps in finding the resources you need are:

1. Identify the problem.
   
2. Identify what you want or need to solve the problem.
   
3. Look for resources in the phone book and on the Internet.
   
4. Ask friends, family, and neighbors for ideas.
   
5. Contact organizations that might deal with similar issues.
   
6. Identify and ask naturals in your community.
   

One last note: the best sleuth follows several clues at the same time. This will save you lots of time and shorten the hunt. Watch out, though—once you get good at thinking about community resources creatively, you may become a natural in your own right!

When we need to find goods or services, there are certain resources we can call on. One resource often leads to another. The natural is one of those resources, but our “detective’s kit” needs a variety of other useful tools.

The phone book and Internet search engines are the most frequently used tools, and for most searches that is where to start. These tools are particularly helpful if you are looking for someone to hire, but they can also lead you to a number of other resources.

Almost all communities have one or more information and referral service. Sometimes these are related to a geographic area such as a city, county, or region, or they are specific to a demographic group, such as the Area Agencies on Aging. Other times they are specific to a condition, like fibromyalgia or migraine headaches.

There are several types of agencies that operate these services. Online, search under “United Way Information and Referral,” “Senior Information and Referral” (or “Area Agency on Aging,” “Council on Aging,” or “Seniors Resource Center”), “Community Services Council” or just “information and referral” and the area in which you live, such as your state or province. If you are using a phone book, be sure to check your city, county, or regional government listings. These services maintain huge files of contact information. Just about any help you might need is available. Even if they don’t have the answer you seek, they will almost always be able to refer you to another agency that might.

Nonprofit agencies such as the American Pain Society, the American Chronic Pain Association, the Chronic Pain Association of Canada, and the Canadian Pain Coalition are great sources of information. Other organizations such as the American Heart Association and the Canadian Heart and Stroke Foundation are also excellent resources. There are similar organizations in most other countries. Many of them have wonderful websites, and in our new world of cyberspace, you can live in rural North Dakota or the Canadian Arctic and still access the help provided by Chronic Pain Australia.

These organizations provide up-to-date information about pain problems. They also provide support and direct services to people with chronic pain. Often, they may fund research to improve our understanding of pain and its treatment and to help people live better with their condition. In some instances you can become a member of one of these organizations. Membership may entitle you to receive regular bulletins by mail or e-mail. You do not, however, have to be a member to qualify for their services; they are there to serve you.

There are also local resources in your community that offer information and direct services. These include the local chapter of AARP (formerly known as the American Association of Retired Persons) or CARP (the Canadian equivalent of AARP), senior centers, community centers, and fitness and recreation facilities. Besides information and referrals, these places offer classes, recreational opportunities, nutrition programs, legal and tax help, and social programs. There is probably a senior center or community center close to you. Your city or regional government office or local librarian can tell you where to find these resources. The calendar section of your newspaper will usually have information about their programs as well.

Most religious groups provide information and social services to persons who need it, either directly through the place of worship or through organizations such as the National Council of Churches or Jewish Family Services. To get help from religious organizations, start with a local place of worship. You usually need not be a member of the congregation or even of the religion to receive help.

The medical community is another resource for you. Call your local hospital, clinic, or health
insurance plan and ask for the social service department. Your primary care provider will also be aware of the physical and mental health services available through his or her practice, as well as other services available in your area.

Your public library is a particularly good resource when you are looking for information about your chronic condition. Even if you know your way around a library, it’s a good idea to ask the reference librarian for assistance. These people are familiar with volumes of material that you may overlook, and they usually are knowledgeable about the community. (They’re probably among the ranks of the local naturals.) Even if you cannot make a visit to your library, you can always call or e-mail with your questions.

In addition to city or county libraries, there are other, more specialized health libraries. Ask your information and referral service if there is a health library in your community that specializes in health-related resources. These places usually have a searchable computer database along with the usual print, audiotape, and videotape materials. These libraries are often maintained by nonprofit organizations and hospitals, so they sometimes charge a small fee for use.

Universities and colleges also have libraries with helpful staff. By law, the regional “government documents” sections of these libraries must be open to the public at no charge. There are government publications on just about any subject, and health-related publications are particularly extensive. You can find information on everything from your chronic pain condition to organic gardening to detailed nutritional recipes. These publications represent “your tax dollars at work.”

If you are fortunate enough to have a medical school in your community, you may be able to use its medical library. It will only be a resource for information, however, not for help with tasks. Naturally, you can expect to find a great deal of information about disease and treatment at a medical library. Unless you have special knowledge about medicine, however, the detailed information you find in a medical library can be confusing and even frightening. Use medical libraries with care.

Books can be useful—indeed, you are reading a book now! Many books on chronic pain and other conditions contain reading and resource lists, either at the ends of chapters or at the back of the book. These lists can be very helpful. We identify useful books at the ends of a number of the chapters in this book.

Your local newspaper can be an excellent resource, especially if you live in a smaller community. Be sure to look in the calendar of events. Even if you are not interested in a particular featured event, you might find what you are looking for by calling the contact number or visiting the website. Look in other logical places for news stories that might be of interest. If, for example, you are looking for an exercise program for people with your health problem, check the sports and fitness section. The pages around the calendar section sometimes feature articles about local health-related events.

Sometimes you can find clues in the the section near the rate information). Look classified section. Review the index of classified under “announcements,” “health,” or any other headings (it is usually printed at the front of heading that seems promising.