📘 Self-Management: Thriving with Multiple Sclerosis & Managing Symptoms 📘

TABLE OF CONTENTS

Multiple sclerosis is a chronic disease that includes a wide range of symptoms. Dealing with the symptoms is daily and therefore, a chronic disease is managed in cooperation with doctors, professional teams and the people living with multiple sclerosis.

What is chronic disease self-management?

The self-management approach is a therapeutic-cooperative approach in which the person takes a very active part in his treatment process and contributes on a daily basis to the management of the disease ^1,2 .

What is behind this approach?

You are the experts in your life– since every person dealing with multiple sclerosis experiences the disease in a different way, its effect on everyday life is different. The resources available to each person are also different, so there is no one right way to manage the disease. Doctors are indeed the experts on multiple sclerosis, but people who live with the disease are the greatest experts on their lives .
You have the ability to deal with sclerosis– just as every person has strengths, resources, life experience, knowledge and skills, which he can use to deal with challenging situations in life, every person living with multiple sclerosis has the ability to deal with the disease.
To see the whole picture– self-management encourages the person to look at the quality of his life in an active way. Meaning, to anticipate where the disease can have an unwanted effect on life and take preventive measures to reduce the negative effects instead of acting only when there is a crisis ³ .

Self-management of a chronic disease requires a broad view of all areas of life: health, family, hobbies, work. In order for self-management to be successful, it is recommended to combine actions and tasks aimed at stopping or reducing the negative consequences of the disease on daily life. ³

Medical management:

Actions belonging to this category are designed to help you live as healthy a life as possible alongside the disease, and to control the symptoms in the best possible way. Medical management tasks include, among others, ³ :

Familiarity with the symptoms – learn to recognize them, so that you can report them and know what is expected and what is unusual.
Monitoring the symptoms – when they get worse and when they subside (at what time?, after what activities, foods, medicines?, etc.). Documenting the symptoms can help you and your attending physician to balance them in an optimal way.
Familiarity with the treatment options available to you – so that you can choose the treatments that best suit your lifestyle and the resources available to you.
Medication management – make sure to take medications on time, and use aids for correct medication management (such as reminders, storage boxes by compartment, etc.).
Monitoring health indicators – according to the doctor’s instructions, such as blood pressure, blood sugar, side effects of medications, etc.

and. Maintaining a healthy lifestyle – nutrition, rest and exercise, according to the instructions of the medical team .

Management of occupations and life roles:

Actions belonging to this category are designed to help you maintain, change or create meaningful occupations, and maintain an active lifestyle at home and in the community. Actions of this type include, among others, ³ :

Prioritization of occupations and positions – calculate what is important to you to preserve and what is less? What is less important can be asked to perform or assist others. What is important to preserve, you can think about how to simplify and reduce the load. For example – if it is important to you to continue cooking meals for family or friends, perhaps it is possible to cook one main dish instead of three, or ask for help from others.
Time management – during the day and week, schedule important activities during the hours when you are most alert and focused, when you do not feel pain or side effects from the medications, and leave time for rest and quiet.
Fatigue management – learn energy conservation strategies such as ergonomic body guides that require less strength and endurance and stress management. It is also important to treat sleep disorders if present, and to learn strategies for temperature regulation that can reduce fatigue. In the article on fatigue you can find more information and tips on managing this symptom.
Managing cognitive symptoms – use cognitive strategies especially in more complex tasks, such as using lists and reminders, repeating important tasks out loud so you don’t forget, and using visual imagery to improve memory. In the article about multiple sclerosis and cognition, you can find a variety of strategies for dealing with cognitive changes.
Finding new meaningful occupations – sometimes we have to give up meaningful occupations or positions. In such situations, you can think of new occupations that will bring new meaning to life.

Emotional management:

Actions belonging to this category are related to dealing with negative emotions that sometimes accompany a chronic illness, such as anger, frustration, stress, or low mood. For example ³ :

Developing coping skills such as breathing for relaxation or practicing positive thinking.
Receiving emotional support from specialist therapists (e.g. a psychologist).
Participation in support groups.
Sharing and receiving support from close people.
Stress-reducing activities such as meditation and yoga.

Video: “Rehabilitation of the patients with Multiple Sclerosis”

Multiple Sclerosis. Exercises for stretching and improving body flexibility and joint mobility, reducing tone.

For additional information about Rehabilitation of the patients with Multiple Sclerosis you can watch a video demonstrating exercises and rehabilitation recommendations.

The benefits of self-management of the disease:

Regaining control over your life . You gain a lot of knowledge about the disease and the treatments, thus getting to know your personal coping better. Studies show that actively managing the disease increases the sense of control over it, and a greater sense of control can improve pain, mood, mental functioning and daily functioning.
Correct decision making. When you make decisions about your health that are appropriate and meet your needs, the chances of success increase. Be attentive to your needs and remember – you are the experts in your life.
Good communication . The better you understand your needs and the solutions available to you, the better you can communicate them to others, which in turn will improve support from the environment and interpersonal relationships.
Increasing resources. Think about what you need to find solutions to life’s challenges. When we have the right and effective resources at our disposal, it can improve the quality of life. For example, joining a support group can improve the feeling of belonging and finding a social circle.
A healthy lifestyle . Having a healthy lifestyle not only helps in dealing with the existing symptoms, but also helps to reduce secondary morbidity such as high blood pressure ¹.

As you can see in this article, self-management of a chronic disease makes it possible to take an active part in the management of multiple sclerosis and may lead to significant benefits in daily life.

The author: Dr. Yifa Arbel (PhD), occupational therapist.