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Getting started and goal setting
MS is a complex condition, and everyone’s experience of MS is unique. However, there are a number of symptoms that are often experienced by those with MS.
Outwardly noticeable symptoms, like poor balance, impaired mobility, and difficulty with fine motor tasks are central features of MS. But, not all symptoms in MS are outwardly visible. As a result, these “hidden symptoms” are often overlooked. Three of these–chronic pain, fatigue, and negative mood–are the focus of this program.
The problem of chronic pain in MS was not well studied until the early 2000s. Studies have shown that:
• Up to 80% of people with MS have pain
• About 25% of people with MS have severe pain (which interferes with their lives)
• People with MS are more likely to have pain
than people without MS
• Most common pain sites are: legs, feet, back
• Many people with MS have pain in more than one location
Fatigue is an invisible symptom of MS that may be misinterpreted as depression or a lack of effort or motivation. In MS, the impact of fatigue may be compounded by muscle weakness.
• As many as 75-95% of all people with MS have fatigue
• Fatigue is described as the worst symptom by 50-60% of those who have MS
• Rates of depression are 2-3 times higher in people with MS compared to the general population
• Approximately half of all people with MS will develop depression at some point during their lifetime
• At any one time, approximately 25% of people with MS are thought to have depression
• Anxiety and stress are also common in MS
What can you do about your MS symptoms?
Chronic pain, fatigue, and negative mood are complex problems that are often difficult to manage. There is usually no single medication or “easy fix” that will provide total relief for any of these symptoms. As a result, people with MS often seek out a number of different strategies in an effort to find relief. One of the most effective ways that patients can address symptoms is through the use of self-management skills and strategies.
What is self-management (SM)?
Self-management is defined as, “What people do on a day-to-day basis to feel better and pursue the life they desire” (Teresa Brady, PhD, Self-Management Consensus Conference, 2010).
- Recognizes that the day-to-day management of MS is done by you and not by a medical provider
- Shifts power to you, so YOU are “in charge” of your health
- Involves having both the skills and the confidence to deal with the day-to-day challenges that come with living with MS
- Consists of a set of personalized coping skills or tools that you practice so that they become new and helpful ways of living your life. If practiced enough, these skills can become habits that help maintain your health and well-being
Why use self-management (SM)?
Research has shown that people who use a self-management approach to manage chronic health conditions:
- Are more confident in their ability to manage their symptoms
- Are happier
- Feel better
- Are better at reducing the negative effects of their chronic illness on their life
What is the purpose of this program?
Self-management programs, such as this one, have been shown to be helpful in managing MS pain, fatigue, and/or depressed mood (Ehde et al., 2015). Usually, they are delivered in a clinic by a psychologist or social worker. However, it is often difficult for people with MS to access these treatments, due to a lack of:
- Availability of treatment
- Finances (inability to pay for the treatment)
This program was developed to:
Provide a high-quality program, specifically designed for people with MS, that:
Supports self-management skills that are known to be helpful
to people with MS
- Is totally free of charge
- Is accessible on any internet-connected device
- Can be accessed anytime and anywhere (convenient!)
- Supports self-management skills that are known to be helpful
Web-based programs such as this have been developed to improve symptom self-management for other conditions, like fibromyalgia and breast cancer. Studies of these programs have shown that the web-based programs help people learn new skills to manage their symptoms (Williams et al., 2010). This program was designed specifically for people with MS.
How can this program help me?
Pain, fatigue and negative mood are commonly reported by people with MS. And, very often a person must manage more than one of these symptoms at a time. Too often these symptoms cause suffering and get in the way of important life activities.
The goals of this program are for you to:
- Learn skills to help you manage MS symptoms, including fatigue, pain, and mood
- Learn how to implement these skills in your daily life
- Increase your confidence in your ability to manage your MS symptoms
- Improve your health, mood, and quality of life
- Engage more fully in the aspects of your life you value
Teaming up with your healthcare providers
Taking steps to self-manage your symptoms is incredibly important. However, you do not have to manage your symptoms alone. There are a number of healthcare providers with different areas of expertise who might be helpful to you. These include:
- Neurologist – specializes in diagnosing and treating neurological disorders; may prescribe disease-modifying therapies or medications to help you manage your symptoms
- Physiatrist – physical rehabilitation physician who focuses on restoring functional ability and quality of life for those with MS
- Psychologist – helps people cope with stressors and symptoms and engage in self-management. Helps you work through social and emotional issues, and work toward valued life goals; can also evaluate and treat cognitive (thinking) problems
- Physical Therapist – helps people increase their mobility, restore physical functioning, and relieve pain
- Occupational Therapist – helps people regain functional ability in everyday activities to achieve the highest degree of independence possible
- Psychiatrist – specializes in diagnosing and treating mental and emotional disorders
- Speech-Language Pathologist – specializes in diagnosing and treating communication disorders, voice and swallowing disorders
You are the most important member of your healthcare team. And, you are most likely to be effective in managing your symptoms when you work to self-manage your symptoms AND collaborate with your healthcare providers to develop a treatment plan together.
You can help yourself the most by taking an active role in your care. Try to talk as openly as you can with the members of your healthcare team about how things are going. Are you having a hard time following their suggestions for managing your symptoms? If you are, it may help to talk honestly about your concerns and work together to solve any problems as they arise. Your healthcare team’s goal is to help you feel better.
Where do I go from here?
My MS Toolkit can help you create a plan based on what you can do right now to manage your symptoms. You can learn about ways to relax, change your way of thinking, set and work toward goals for your life, and use activity and rest to manage your symptoms. Through this program, you will also be able to track your progress with helpful worksheets. With My MS Toolkit, you can customize and change your plan as your needs change over time by taking the Steps for Me assessment.
Self-Guided Selection Matrix
My MS Toolkit gives you strategies for changing your routines, health habits, and lifestyle to help you feel better. Learning how to set effective goals is an important skill that may help you make these changes successfully and, in turn, improve your health. The steps in this module will help you set and achieve goals such as:
- Regularly practicing relaxation techniques
- Starting or maintaining an exercise program
- Maintaining good sleep habits
- Pacing yourself to prevent over- or under-doing it
How does setting goals help you manage your MS?
Goal setting has many benefits to managing MS and its symptoms.
Setting realistic, personalized goals:
- Provides direction and structure to our lives
- Helps us better manage our time and keeps us from wasting time on unimportant or energy-sapping activities
- Increases our sense of accomplishment and control over our lives
- Increases our sense of purpose and meaning
- Serves as a source of motivation as we pursue larger important life goals
- Provides us opportunities to have successes, both in meeting larger goals as well as smaller sub-goals along the way
- Helps us cope with stress or problems (due to the above benefits)
- Improves confidence and self-esteem via accomplishments, successes, and structure
- Serves as a pathway out of the vicious cycle of suffering that can come from pain, stress, and/or depression
Setting realistic goals
You might be wondering why goal setting is part of My MS Toolkit. Most of us have set goals for ourselves at some point or another in our lives. Some goals we set because we want to achieve them. However, we can also set goals because others expect things of us or because we think we should be doing something a certain way due to societal norms or internal pressures.
We can also set goals that are too ambitious for our current situation. For example, a goal of exercising 30 minutes a day may not be realistic if you are not exercising at all right now. A more realistic goal may be to start by walking 5 minutes a day and slowly increase that time, using a plan like the ones described in the Being Active module.
Goals can be motivating, but if set up the wrong way or for the wrong reasons, unrealistic goals can be discouraging or not met.
Goal setting – picking goals
Think about a goal you might want to achieve. Goals can be anything that you find meaningful, enjoyable, rewarding, or aligned with your values, priorities, or needs.
- Goals can be either “long-term goals” or “short-term goals.” Long-term goals tend to be the goals you hope to attain over long stretches of time, or even over your lifetime. For example, owning your own home or earning a college degree. Short-term goals are the smaller, more immediate goals that often lead to accomplishing a long-term goal. For instance, exercising 3 times per week. We recommend first starting with a short-term goal, which can lead to long-term goals
- Goals can be “skills-based” where you work on something that you’d like to get better at, or they can be “good-for-you goals” that bring you joy, confidence, comfort, or otherwise boost your mood
- We also know that individuals who are experiencing pain, fatigue, stress, or poor mood tend to be less active, which can then cause additional problems. Therefore, it may also be useful to set goals that help to increase activity
- You will learn how to set two different types of goals in My MS Toolkit: “good-for-you goals” and “skills-based goals”
Types of goals
“Good-for-you goals” are:
- Goals to participate in activities that are meaningful to you, enjoyable or fun, and/or in line with your priority of reducing pain, fatigue, or depressed mood
- These could also include goals in which you achieve something and thus feel a sense of accomplishment
- What are some “good-for-you goals” that you would like to pursue? Write at least one “good-for-you goal” on Step 1 of the Setting Goals Worksheet
“Skills-based goals” are:
Goals that give you opportunities to practice the specific self-management skills in My MS Toolkit. These goals relate to using skills to better manage your mood and/or pain and may include:
- Being active
- Managing thoughts
- Energy management
- Relaxation techniques
- Positive self-talk
(refer to the Setting Goals Worksheet)
In order to begin working on goals, we need to make sure to
set the stage for your goals to be accomplishable
- Accomplishable goals are SMART!: Specific, Measurable, Attainable, Realistic, & Trackable
- By specific, we mean very clearly defined (eg, “eating healthier” is too vague/broad, “incorporating more vegetables into my meals” is more specific, “having a salad with dinner” is even more specific)
- Measurable means there is a clear way to know if the goal has been accomplished. “Walking more” is too open-ended, walking 3 times per week for 15 minutes at a time is very easy to measure
- Attainable goals are goals that are reasonable. This might mean that you need to think how to set smaller goals and work in steps toward your larger goal
- Realistic is often the tricky piece of the puzzle. Often when people begin goal setting, they have a lot of energy and drive to get a lot accomplished right away. Unfortunately, this can result in setting overambitious goals that are not realistic. Setting too high of a goal too early can set people up to not accomplish that goal and leave us feeling less motivated to set goals
- Look for ways to track your progress, such as using an exercise log or the Setting Goals Worksheet
- Long-term goals often involve many smaller short-term goals to reach them. If you choose a goal that might not be realistic, it can be useful to consider whether that goal can be broken down into steps to make it more manageable. For example, someone may want to create a flower garden. If his/her goal for the week includes building raised beds, hauling soil, and buying and planting lots of new flowers, it might not be realistic. However, gathering the materials to build the beds this week might be a piece of the project that could be accomplished as a first step toward the bigger goal
- Checking your confidence level is a good way to verify if the goal is realistic for you at the time you are setting the goal
- At the bottom of this page, you will see a confidence scale. Research has shown that when people are more confident about their ability to achieve a goal, they are more likely to succeed
- It is useful to keep this in mind when creating goals. For each goal you create ask yourself, “On a scale of 0 to 10, how confident am I that I can reach this goal?” (With 0 being not confident at all and 10 being totally confident.) A rating of 0 to 6 means that the goal is too hard and needs to be broken into smaller pieces. A rating of 7 to 10 means it’s a good fit
- When we create goals, we want to make sure that they are specific, measurable, attainable, realistic, & trackable, but also created so that you are confident that you can achieve them
The Setting Goals Worksheet shows how some example goals shape up when held to the standard of SMART goal setting.
Goal setting (see the Setting Goals Worksheet)
Of the goals you’ve generated, let’s pick one short-term
goal to practice working on. Think about:
- How important is it to you to work on this goal? What are the positives from working on this goal?
Applying SMART/confidence levels to your goal
- Let’s see if your goal is a SMART goal. If not, how can you modify that to fit those categories?
- On a scale of 0 to 10, with 0 being not confident at all and 10 being totally confident, how confident are you that you can reach this goal? Why did you rate your confidence the way that you did?
- How will you know if you’ve achieved that goal? What will you have done? How will you feel?
Pull out your Weekly Personal Self-Management Plan; let’s add all the information about your goal to the personal self-management plan:
- Specific Activity: Note specific details here: On a scale from 0-10, where 10 = extremely worthwhile and 0 = not at all worthwhile, how worthwhile does this goal sound to you?
- Measurement: How often will you work on this goal? If a onetime activity, when will you do it? How will you know it’s done? If someone was observing you during the week, would they be able to tell you had met your goal because of what they had seen you do?
- Realistic/Confidence: Check how realistic it is by assessing your confidence on a scale of 0-10.
Like the other My MS Toolkit tools, goal-setting takes practice, experimentation, patience, and persistence. To start, focus on one area that is important to you. As you get used to setting self-management goals, you may be able to take on new goals. The Setting Goals Worksheet may help you plan and track your goals. It will also help you practice goal-setting skills.
A note for family and friends
Everyone, not just people with MS, can benefit from learning how to set realistic goals. As a person who helps someone with MS, you can use this information about goals to help the person make important lifestyle changes. You can help him or her:
- Identify problems
- Make a goal-setting plan
- Deal with obstacles along the way
You can also use this information to set your own goals. The same goal-setting process may make a big difference in your life too!