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Getting started and goal setting
Multiple sclerosis (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 invisible symptoms are often overlooked. Three of these – pain, emotional changes (e.g. low mood/depression) and fatigue – are the focus of this programme.
Tip: Even if you don’t suffer from the three symptoms noted above, it’s worth reading through this programme, as you may find a lot of the guidance is still useful for you and how you cope with your MS on a more general level.
Pain
The problem of pain in MS was not well studied until the early 2000s; however, we now know that:
- Up to 80% of people living with MS have pain.
- About 25% of people living with MS have severe pain (which interferes with their lives).
- People living with MS are more likely to have pain than people without MS.
- Most common pain sites are: legs, feet, back.
- Many people living with MS have pain in more than one location.
Emotional changes e.g. low mood/depression
- Rates of depression are 2-3 times higher in people living with MS compared to the general population.
- Approximately half of all people living with MS will develop depression at some point during their lifetime.
- At any one time, approximately 25% of people living with MS are thought to have depression.
- Anxiety and stress are also common in MS.
Fatigue
- 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 living with MS have fatigue.
- Fatigue is described as the worst symptom by 50-60% of those who have MS.
What Can You Do About Your MS Symptoms?
Pain, emotional changes and fatigue 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 living with MS often seek out a number of different strategies in an effort to find relief. One way that patients can address symptoms is by using self-management skills and strategies.
Remember, all MS management strategies should be carried out in consultation with and under the guidance of your healthcare team, and in combination with any ongoing medical treatments you may have been prescribed.
What is Self-Management (SM)?
Self-management can be described as how people behave or act on a daily basis, in order to feel better and pursue the life they desire.
Self-Management:
- Recognises that the day-to-day management of MS is your responsibility, not just that of your healthcare professional.
- 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 personalised 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?
Using self-management approaches to manage chronic health conditions can help people to:
- Be more confident in their ability to manage their symptoms.
- Feel happier.
- Feel better.
- Get better at reducing the negative effects of MS on their life.
What is the purpose of this programme?
Self-management programmes such as this one can be helpful in managing MS pain, emotional changes, and fatigue.
Usually, they are delivered in a clinic by a psychologist or social worker. However, it is often difficult for people living with MS to access these treatments, due to a lack of:
- Time
- Transportation
- Availability of treatment
This programme was developed to provide a high-quality resource specifically designed for people living with MS that:
- Supports self-management skills that are known to be helpful to people living with MS.
- Is totally free-of-charge.
- Is accessible on any internet-connected device.
- Can be accessed anytime and anywhere.
Web-based programmes such as this have been developed to improve symptom self-management for other conditions, like fibromyalgia and breast cancer. Web-based programmes can effectively help people learn new skills to manage their symptoms. This programme was designed specifically for people living with MS.
How can this programme help me?
Pain, emotional changes, and fatigue are commonly reported by people living 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 programme are for you to:
- Learn skills to help you manage MS symptoms, including pain, emotional changes, and fatigue.
- 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 professionals
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 professionals with different areas of expertise who might be helpful to you.
These include:
- Neurologist – specialises in diagnosing and treating neurological disorders; may prescribe disease-modifying therapies or medications to help you manage your symptoms
- 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 – specialises in diagnosing and treating mental and emotional disorders
- Speech-Language Therapist – specialises 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 collaborate with your healthcare team to develop a treatment plan together, while also working on self-management of your symptoms.
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 and how you are feeling. Are you having a hard time managing your symptoms or your treatment? If you are, it may help to talk honestly about your concerns and work together to solve any problems as they arise. Ultimately 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 programme, you will also be able to track your progress with helpful work sheets. With My MS Toolkit, you can customise and change your plans as your needs change over time by taking the Steps for Me assessment.
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Goal setting
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 programme.
- Maintaining good sleep habits.
- Pacing yourself to prevent over- or under-doing it.
You may want to visit Relaxation, Being Active, Sleep, or Managing Energy steps for more information about these goals.
How Does Setting Goals Help you Manage your MS?
Goal setting has many benefits to managing MS and its symptoms.
Setting realistic, personalised goals:
- Provides direction and structure to our lives.
- Helps us better manage our time and keep 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 emotional changes.
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 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 if 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 qualification. 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 longer 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, stress emotional changes or stress 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 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 emotional changes.
- 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 Goal-Setting Steps Worksheet.
‘Skills 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 emotional changes and/or pain and may include:
- Being Active
- Managing thoughts
- Energy Management
- Relaxation Techniques
- Positive Self-Talk
Goal-setting Steps
(refer to Goal Setting 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 (e.g. ‘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, 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 the goals setting page, you will see a confidence scale. 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 zero to ten, how confident am I that I can reach this goal?” (With zero being not confident at all and ten 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 Goals Setting worksheet shows how some example goals shape up when held to the standard of SMART goal setting.
Goal Setting
(see Goal Setting 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 zero being not confident at all and ten 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 of 0 to 10, with 0 being not at all worthwhile and 10 being extremely 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.
A Note for Family and Friends
Everyone, not just people living 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 them:
- 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!
Choose your next
My MS Toolkit module
This is not a replacement for advice from your healthcare professional or healthcare team. Please consult your healthcare team first and foremost about your multiple sclerosis and the self-management advice contained within this website.
Developed by the University of Michigan, provided by Janssen.
References
[1] Ehde DM, et al. Chronic pain in a large community sample of persons with multiple sclerosis. Mult Scler. 2003;9(6):605-611.
[2] Ehde DM, et al. The scope and nature of pain in persons with multiple sclerosis. Mult Scler. 2006;12(5):629-638.
[3] Ehde DM, et al. Chronic pain in persons with multiple sclerosis. Phys Med Rehabil Clin N Am. 2005;16(2):503-512.
[4] Svendson, et al. Pain in patients with multiple sclerosis: A population-based study. Arch Neurol. 2003, 60(8): 1089-94.
