Participant Manual

Introduction

The idea behind self-management is ownership. Ownership over one’s life. It’s easy to say "I have no control over my situation" or to let someone else make all your decisions for you because this takes all the responsibility off your shoulders. Initially, this may give you a sense of relief. Yet, it also leaves you powerless. And the feeling of powerlessness can cause you to feel helpless, hopeless, and depressed. These feelings of helplessness and hopelessness ultimately result in a lack of desire to stay well, which in turn manifests poorer health.¹

In addition, when you are not an active participant in your life, you are not living. The purpose of this manual is to help you regain control over your life and to live it fully, completely, and in the best interest of staying well. The information in the manual is designed to help you begin an educational and behavior changing process that will lead you to become a "manager" of your health and wellness. The manual is broken into five sections, not including the glossary and appendices.

Within the individual sections you will find tips to help you:

eat more nutritiously
develop a more positive attitude
develop problem-solving skills
manage your symptoms
develop a routine for taking and adhering to medicine schedules
reduce stress
develop a more active lifestyle
create a provider-patient relationship that works for you

Also you will find educational information on:

HIV and the immune system
common opportunistic infections, their prevention and treatment
antiretroviral treatments and other medical drugs
medical tests, why they are performed and how to understand them
sexually transmitted diseases and safer sex
nutritional suggestions and food safety
accessing the internet for latest information related to HIV/AIDS
and complimentary therapies.

It is the hope of the Owen Clinic staff that this manual will help you to help yourself -- by getting you to ask questions, to seek out information, and to play a role (however big or small you want it to be) in managing your life for wellness.

Now let’s begin your journey with learning about self-management and problem-solving skills.

Self-management

What is a Manager?

A manager is someone who directs, controls, and takes charge. Business managers look out for the interest of their businesses. They are responsible for ensuring that everything from maintenance to fiscal expenditures run smoothly and correctly. They usually direct the activities of others and make sure that what needs to be done gets done. When there are problems, they solve them. Often, they are supported by a "management team" who helps them to make decisions by providing information and technical support. Together, a manager and his or her team can create a dynamic, highly successful business. However, when there is no one "looking out" for the business’ interest, the business can and often does become less productive and, when faced with a serious challenge, the business may fail.

Managing Your Life

This business analogy is very similar to your life. You are the manager of your life. You decide what to eat, what to wear, where to go, how to earn money, how to spend the money, what relationships to develop or end, how to act, and what to say and do. In short, you control your own life.

Your AIDS/HIV diagnosis may make you feel like you have no control over your life. It may make you feel helpless, angry, sad, hopeless, despair, rage, fear or an array of other feelings. You may find yourself asking questions like, "Why me?" "What am I going to do?" or "How will I get by?". You may feel a deep sense of loss accompanied by a deep sense of fear. These feelings may make you think your life isn’t worth living and so you stop managing your life. The moment you stop managing your life is the moment that you create an environment for a poor mental and physical state, since you are not running your "business" called "self."

Self-management

Self-management is the process of creating an opportunity where it seems as if there is none. It is re-gaining or gaining control over your life in the midst of a what feels and looks like a very hopeless situation. Self-management is taking responsibility for your own interest, activities, welfare, and advantage. Like a business manager, you become responsible. You ensure that what needs to be done to keep you healthy gets done. However, instead of directing others you direct yourself towards physical, mental, and spiritual wellness.

You, like a business manager, will be supported by a "management team," except your "management team" is made up of health care providers, social workers, counselors, nutritionists, and health educators instead of accountants, lawyers, and directors. Your "health care team" will help you to help yourself. You will do the work, because it is your life, and your life is worth the work. In short, self-management will help you develop the qualities of a survivor. People who demonstrate survivor qualities:

are realistic and accept their AIDS/HIV diagnosis, but do not take it as a death sentence;
have a fighting spirit and refuse to be helpless and hopeless;
take charge of their lives and can avoid stressful situations;
are aware of their own emotional, mental and physical needs and meet them;
are able to talk openly about their illness;
take charge of their health and they treat their physician as a partner;
are involved in helping others with HIV/AIDS.

Getting Started

Starting something new requires some basic understanding of how and where to start. At the basis of self-management is your mental attitude. The next section will help you prepare yourself for beginning your self-management program. And, believe it or not, it all begins with a thought!

Right Thought and Right Action

A doctor once told me the story of two patients who were both diagnosed with the same cancer. These women were similar in many ways. They were the same age, lived similar lifestyles, came from similar backgrounds, and underwent similar treatments, and they both responded initially very well to the chemotherapy. Yet, sadly, one woman died within six months of her diagnosis. The other woman is still living today, with her cancer in remission.

When I asked the doctor why one woman would die and the other is alive, he replied that the main difference he could point to was their attitude and their thinking. The thoughts of the woman who lived were positive, affirming, and determined. The patient knew from the beginning that she would successfully manage her illness. This thought process is called "right thought."

Self-management begins with right thought. You must have a thought process that allows you to succeed, enhances your self-esteem, and helps you stay diligent and persistent in managing your life for wellness (right action). There is an old saying that goes: "Thoughts are things. So you think you are, so you are. So you think you shall be, so you shall be." If you really give the above saying some consideration you can see the truth in it. Everything that we create begins with a thought. Take for example athletes and entrepreneurs. Both of these groups of people attribute a good portion of their success to their mental attitude. Often, Olympic athletes will see themselves in their mind’s eye excelling, winning, breaking records right before competitions in order to build their confidence. Some of our country’s most successful people knew they would be successful long before success ever touched their lives. Ophra Winfrey, one of America’s most successful business women, told an interviewer that she knew she was destined for greatness. On a more tangible level, look at all the inventions that we use everyday. Take, for example, the telephone. The telephone was a thought long before it was ever a reality.

What turns "everyday people" into record-breaking athletes and multi-millionaires? The answer is simple -- their thoughts and their actions. Their thoughts are self-affirming, support patience, perseverance, and focus. Their acts are a direct result of their thoughts. They persevere through difficult times. They don’t give up. They stay focused on creating solutions to any obstacles on their paths. They are patient, telling themselves, "One more step, don’t give up, you’ll make it."

This thought process not only applies to breaking Olympic records and creating million dollar companies, but also to maintaining everyday personal health and happiness. In our every day lives, the thoughts we have create a mental attitude that will either work for us or against us.

Take, for example, the woman whose cancer is in remission. Her thoughts around successfully managing her illness led her to take the steps necessary to turn her thoughts into reality. She became very active in managing her health care. She constantly asked questions. She sought ways to lesson her symptoms and stress (relaxation, meditation, massage), she continued through her treatment even though it had strong side effects. She stayed active. When she was feeling too ill to jog, she would walk around the block; if she couldn’t walk around the block, she’d walk up and down her driveway. She ate nutritiously to support her body’s caloric needs and ate what she could to keep her strength up (even when she was nauseated). In short, she did what she needed to do in order to manage her illness, symptoms, and activities of every day life. This is called "right action."

Right action is managing your life for wellness. It consists of taking the action that supports you in living your life completely, fully and for your highest and best good. For the patient with cancer, this meant eating well, staying active, asking questions, and actively seeking out solutions to any "bumps" or "ditches" on her path to wellness. The same applies to you. Your thoughts around managing your illness will either work against you or for you

If you think that your illness controls you, that it is useless to do anything, that you are powerless to affect how you feel, then you are more likely to experience worsening health and not do those things that support optimal health (e.g., taking your medications as prescribed, eating nutritiously, exercising, quitting smoking, asking questions, etc.). Once you begin to experience worsening health, your ability to do the normal activities of living become difficult, making you depressed and less likely to take action. This cycle of negative thinking and non-action eventually leads to more pain, lack of mobility, and worsening symptoms.

If you work at creating thoughts that support you in staying well mentally, emotionally, and physically, you will be able to do what you need to do in order to manage your HIV/AIDS diagnosis successfully and, thereby, live a higher quality of life. With right thought and right action you can begin to create the opportunities for living well with your HIV/AIDS diagnosis. If you set into motion thoughts which support your success in managing your AIDS diagnosis, then you’ve taken the first step along your path to fully living your life regardless of the ditches, bumps, and barriers HIV may place on your path. Your right thoughts will help support your right action. Your right action will help you to maneuver successfully around any obstacles on your path. In the beginning, the path of right thought and right action may seem difficult, but with practice and patience you will learn to master it, and the rewards will be great!

How to Develop Right Thought

Our minds are complex. Some philosophers and masters of meditation describe the mind as if it were not part of us, as if it were a separate entity with a will of its own that needs to be reclaimed so that we may use it for our highest and best good. And, for many of us, this is true. We have not learned, nor been taught to control our minds. We often have thoughts that we don’t want to think. We may keep ourselves up all night with worry. Our minds constantly chatter away, and many times we are not even aware of it. In any given minute, a thousand thoughts can pass through our mind. For example, we may get into our cars and drive for miles arriving at our destination not remembering anything about the drive, since our awareness was elsewhere. Some of our thoughts are helpful and positive. Some are negative and self-destructive.

An old wise monk once said, "Think about what you are going to think about." And, this is the first step in developing right thought. You must develop a sense of awareness around your current thinking processes and thoughts. Once you are aware of your thoughts you can implement the second step, which is to re-frame your thinking by thinking again, carefully selecting and consciously choosing what thoughts you will allow to run through your mind and enter your conscious and subconscious mind.

The third step is forgiveness. Forgiveness is important because it allows you to let go of the past and to move forward. You may find that some of the negative thoughts you have were put there by other people and some by yourself. Forgiving yourself and others will allow you to be aware of the source without getting stuck in a vicious cycle of victimization and blaming.

The last part of developing right thought is practice. You must practice, for practice is at the basis of all self change and mastery. Above all be gentle and patient with yourself. You must be willing to do the work in order to reap the benefits. Remember, you are learning a new skill, and learning a new skill takes time and practice. Imagine for a moment that you want to learn how to play the piano. A teacher could show you how to place your hands on the key board, how to read music, etc. However, if you did not practice you would never be able to play the piano. Also, your ability to play is in direct proportion to how much you practice. If you practice only a few days a week, for an hour or so, you will reach a level of skill that reflects your effort. And in couple of years you would be able to play the piano quite nicely. However, if you practice the piano every day, for two hours, you may very well master it in seven years and make playing the piano look effortless. The important thing to remember is to be consistent with your practice and "in time and on time" you will get where you want to be with your self-management skills. Do not become discouraged because as long as you are practicing you are moving forward. So, again, be gentle and patient with yourself.

Tasks For Developing Right Thought
Awareness-- Think about what you are going to think about. Consciously be aware of your negative thoughts. Keep a journal for a week and write them down. What triggered them? How did you feel before and after the thought?
Re-framing-- Change your thoughts so that they support you. Review the entries in your journal and change your negative thoughts into loving, supportive thoughts, by re-thinking. For example: "I’m good for nothing" becomes "I am worthwhile and contribute joy and happiness to the people around me."
Forgiveness-- Forgive yourself for your negative thoughts. This is especially important in self-management. There may be times in your self-management process when you will get frustrated with yourself and your progress. You must not mentally beat up on yourself. Also, forgive others. You may find that some of your negative thoughts are the fruit of seeds planted along time ago by people who knew no better and who were also carrying negative thoughts about themselves. In order to be successful you must be able to untie the knot that binds you to your negative thoughts, and a big part of that is forgiveness.
Practice-- Contrary to popular belief practice does not make perfect. Practice makes progress. Develop a practice and stick with it. For example, every night before you go to bed say all your new positive, affirming thoughts to yourself out loud. If you do this every night over an extended period of time you will begin to see the difference in your attitude. More importantly incorporate your new thoughts into your everyday life. As a negative thought begins in your mind, stop and think again. If you think you can’t succeed at something, stop and think again. If you think you are not worthy, stop and think again.

Journaling Exercises

Developing your awareness is like watching a movie or reading a book. It takes time and each scene or chapter reveals more of the plot. The following exercises are designed to help you develop awareness around your thoughts and to teach you how to begin to reframe and shift your consciousness to suit your Self-management program.

Exercise 1. Think Again

Pick a time during the day or night, whichever is best for you, and take five minutes to observe your thoughts. Incorporate this into your daily schedule. For example, you may want to do this right after dinner or before or after your favorite TV show. To ensure success it is important to develop a consistent routine.

Sit down in a quiet place, take a few deep, cleansing breaths and quiet your mind down. Try to think about nothing. Your mind is like a still lake. Inevitably thoughts will arise.
Be aware of your thoughts, mentally record them as they pass by. You may hear yourself say something like, "This is stupid," "I can’t do anything right," or you may think about past experiences or future experiences. You may hear yourself say something like, "If only I had done...", "I’m such a loser I can’t ...." "Life is so difficult." You may even have negative thoughts about others. It may shock you and even make you sad or angry that you have such thoughts about yourself or others. Feeling this way is normal and okay. Be aware of your thoughts and feelings. Do not judge them. Do not block them. You are an observer, not a judge. You are simply observing and recording.
Write down in your journal your thoughts and any feelings you might have around them. You may want to ask yourself, "where do all those thoughts come from?" If you do not have an answer that is okay. Everything will become clear to you "in time and on time."
Rephrase your thoughts after you have written them down. Rephrase them by thinking again. For example, "This is stupid," might become "I am willing to participate without judgment" or "I am glad I am doing this." "Bob is an insensitive ass." might become, "I love Bob, he’s trying his best." "I’m a loser" might become "I love myself" or "I am capable and confident."
After you have rephrased your negative thoughts, say your new thoughts to yourself out loud. This will feel uncomfortable at first, especially if you have a lot of negative thoughts, since most of us are not accustomed to hearing or accepting positive comments about ourselves.
Repeat this process every day until you know in your heart that the thoughts about yourself are changing. You will see the difference. And, as your thoughts change you will see and understand yourself more clearly.

Another form of this exercise is to carry a pocket journal around with you and write down your thoughts as they happen. For example, you may be at work looking for a file. In the midst of the search you say to yourself, "Gosh, I am so stupid, where the hell did I put that file?" As you catch yourself, write down the thought and rephrase, "Okay, I’m a smart and organized person. Where is that file?" As your awareness grows you will begin to catch yourself mid-thought and you will change it automatically. This takes practice, but the "thinking again" process will become automatic. Remember, if you think you can’t do it, then think again. You will be amazed by the change it will have on your self-esteem and outlook on life.

Exercise 2 : Gratitude Journaling

You can do this exercise at the completion of your day before you go to bed. It will help you feel better about yourself and your life and it is a nice way to end the day. The idea behind this is to focus on the positive people, experiences, things, etc. in your life. If you do this consistently every day for several weeks you will begin to see the shift in your personality and outlook. This is especially good to do in conjunction with Exercise One.

It is important to schedule this into your day as part of your bedtime routine. So, for example you may do it after you have brushed your teeth or taken your evening medications. Success depends on developing a consistent practice that is part of your routine.

Take a few deep cleansing breaths to clear your mind of the day’s activities and worries (with time you will see that you will have fewer worries!).
Write down at least three things that you are grateful for. For example, you may write down, "I am grateful for getting up this morning." "I’m grateful for having a good doctor." "I’m grateful for my friends." With time you will find that you will want to expound on your statements. You may find yourself writing sentences or small paragraphs about what you are grateful for, or your lists may get longer or shorter. Both are okay. You may find that there is one thing or person you are so grateful for that he, she or it appears on your lists several times in a week.

This exercise only takes a few minutes every night, and it leaves you with a pleasant feeling to fall asleep with.

Right Action: Becoming a Self Manager

Now that you have begun to change your thinking process and are in the habit of "thinking again", you have a foundation that will help you succeed in self managing your HIV/AIDS diagnosis. Your thought process and mental attitude are key ingredients to succeeding at self-management. If you feel you are not mentally ready to make the commitment, it would be best to wait until you are ready. Remember, all things happen "in time and on time." If you feel you are not ready this would be a good time to meet with the health educator to discuss any difficulties you may be having with preparing yourself mentally. Remember, be gentle with yourself because you are always moving forward.

Developing a Plan

Any good manager will develop a plan to help her reach her goals. The plan is like a road map. It outlines the steps you will need to take to realize your goal. The steps of a plan are as follows:¹

1. Evaluate Your Readiness: Are you mentally ready to commit to learning a new skill? Are you willing to develop a practice and make it part of your routine? Are you willing to do the work?

2. Goal Setting: Decide what you want to accomplish. These goals can be anything which supports you in living well and fully. It could be to develop an exercise plan, to seek out more social support, to increase your adherence to your medications, to gain weight, to learn how to dance. What is important is that it be something you want to do.

3. Develop Weekly Short Term Objectives in the Form of a Contract: These are behavior specific and realistic steps that you will take to help you realize your goal. You will write these steps down and agree to carry them out by a specific time. The agreement is with yourself. It is important that the agreement not be with any one else because you are doing this for you.

Your objectives should contain answers to the following questions: 1) How -- "How often?" or "How much?"; 2) What -- "Exactly what will you do?"; 3) When -- "When will you do it?". For example, if your goal was to "exercise more" one of your objectives might read like this: " This week I will walk from my house down to the corner and back every other day in the morning after breakfast"

How often -- every other day

What will I do -- I will walk from my house down to the corner and back

When will I do it -- in the morning after breakfast, this week.

It is important to start exactly where you are when writing your objectives. In other words, if you can only walk for 5 minutes without getting tired, then start with 5 minutes and build on that. If you have never done any exercise then you may want to start with 10 minutes of stretching and build on that. It is also important to be realistic. Do not set yourself up for failure. It is important to develop a contract that you can meet. For example, instead of writing a contract that requires you to walk every day, write one that requires you to walk three times a week. This way, if you feel too ill to walk one day then you can still meet your contract. Success with your first contract will give you the confidence to meet any new contracts. As your confidence and ability to adhere increases you can change your contract objectives accordingly.

After you have finished writing all your contract objectives, rate how certain you are that you can complete it. If you feel you are "sure" or "absolutely sure," then it is probably a realistic contract. If you are "neutral" or "so-so", then it would be wise to go back and adjust some of the objectives to make yourself feel more confident that you can meet it. For example, let’s say a patient wants to quit smoking. He writes down as his objective "I will cut my smoking in half by smoking only one pack of cigarettes a day for a week." The patient reviews this statement and realizes it is not very realistic since he has been smoking two packs a day for five years. So he re-writes it until he knows he can succeed.

Success is very important when you first begin a self-management program. Once you are sure you can meet your contract, your planning is done. You are now ready for the "doing" phase. To help you with this phase, post your contract where you will see it every day. For example, on your refrigerator, your bathroom mirror, or your television.

4. Carry Out the Contract/Checking Results: Fulfilling your contract will be fun and easy if you are gentle with yourself. Check off things as you accomplish them. Seeing those check marks will give you more motivation. Ask family or friends to inquire on how you are doing. Having to report your progress is good motivation. Make sure you keep a positive mental attitude throughout the process. If you find negative thoughts creeping into your awareness, think again. Also make daily notes on your progress or lack of progress. These notes will be helpful in planning out your next contract and in problem-solving. For example, "How do you feel when you accomplish your activity?", "How do you feel when you don’t accomplish your activities?", "What barriers are preventing you from successfully meeting your contract?" Write everything down in your journal.

5. Problem-solving: The first step in problem-solving is to identify the problem. This is where your notes will come in handy. Your notes and some reflection on the barriers will help you identify the problem.

Once the problem is identified the next step is to brainstorm solutions. List ideas to solve the problem. This is a good time to get support from the health educator or any member in your health care team or family and friends. They can help you in the brainstorming process.

Once you are satisfied with your list of possible solutions, pick one to try. Remember to maintain "right thought" and to be patient. Give your solution time to work, and use positive thoughts to keep you motivated and focused on creating a solution.

Assess the solution-- did the solution work? If so, great. If not, be willing to try another solution from your list. This is a good time to talk to others about your feelings or frustrations and seek advice from your friends, family and health educator or any member of your health care team.

Sometimes problems are not solvable due to factors beyond your control. The best you can do is to work around it until a solution presents itself or until factors change. Most of all, don’t give up on the whole process because you encounter a problem that seems unsolvable.

6. Reward Yourself: Many of the rewards that will come to you will be the direct result of your self-management. You will feel more in control and, in general, have a fuller and more complete life. It is good to reward yourself throughout the process and at the completion of a job well done. For example, you may treat yourself to a movie or a dinner at a your favorite restaurant after successfully keeping a part of your contract. You might buy yourself something special or treat yourself to an ice cream sundae. Self rewards are part of the self-management process, so please make sure you do them. You deserve them!

Self-management will help you manage your HIV/AIDS diagnoses in a way that serves you. If you use the tools describe in this chapter, you will become an active participant in the decisions that affect your health.

Goal: Your goal can be anything that supports you in living well. You will be more likely to carry it out if it is something you want to change or do. The goal is the "big picture."

Example: I want to eat more nutritiously. This goal states the overall outcome. You reach the goal through your short term objectives.

Weekly Short Term Objective: For example, if your goal was to "exercise more" one of your objectives might read like " This week I will walk from my house down to the corner and back every other day, in the morning after breakfast." Your objectives should contain answers to the following questions:

When writing your objectives, it is important to start exactly where you are. In other words, if you can only walk for 5 minutes without getting tired then start with 5 minutes and build on that.

Can you complete this? If you feel "neutral " or "so so" about your ability to complete this contract then adjust the objective until you feel "sure" you can complete it. Once you feel sure, check off the box below and post it where you can see it everyday.

4	Day	Daily Notes
	Sunday
	Monday
	Tuesday
	Wednesday
	Thursday
	Friday
	Saturday