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Well-being in MS

Michelle Ennis, MS Clinical Specialist Occupational Therapist, & Jenny Craig, Physiotherapist, Walton Centre, Liverpool

Open Door - February 2003 pages 8-9

What is wellness?

Whilst there is no agreed definition of 'wellness' there is an acceptance that wellness is a concept encompassing feelings of physical, emotional and spiritual well-being. For many years activities directed towards improving well-being were not readily encouraged for people with chronic conditions such as MS and healthcare interventions centred on management of symptoms and the physical functioning of an individual. However the climate has now changed enormously and greater emphasis is placed on people's general health and emotional and spiritual well-being. Hence it is now accepted that people with chronic conditions, such as MS, are capable of having high levels of well-being and therefore promoting this for people with MS is of paramount importance.

The basis of this approach centres on the person being encouraged to participate in activities directed towards improving and/or maintaining optimum levels of well-being. Whilst these are often individual to each person and their unique situation, common activities have emerged. These include exercise and physical activity, stress management, nutrition, lifestyle adjustment and responsible health practices. These are often termed health-promotion activities.

Through experience within our service, we have found these individual activities to be closely linked, impacting on each other and on the overall well-being of the person with MS (as can be seen in the diagram). People with MS often find it difficult to undertake these types of activities for a range of reasons, often lacking knowledge in how to approach them or lacking confidence in their own abilities to carry them out safely and effectively. However research has shown that people with MS have a desire to undertake health-promotion activities and feel they are essential in maintaining their quality of life1.

Exercise

The information people with MS have been given in the past with regard to exercise has varied from 'do no exercises at all' to 'you must exercises as much as you can'. Fear of fatigue or temporary worsening of symptoms has led many people with MS down the road of deconditioning and poor fitness. Whilst exercise cannot reverse the process of MS, it is acknowledged that regular activity can assist with prevention of some of the complications that arise due to inactivity. There is no accepted normal level of exercise for people with MS. Each person should consider their own individual symptoms and circumstances AND interests. Exercise for people with MS should be considered on a much broader scale than simply the classic forms of exercise e.g. activities such as swimming, aerobic classes or cycling. Whilst these are useful activities, exercise actually encompasses any activity that involves physical movements with even a slight increase in effort, such as stair climbing, housework, shopping, gardening or decorating. A combination of 'exercise' and 'activity' is the best approach bearing in mind fluctuations in MS day to day. It is safe for people with MS to try any activity they may be interested in as long as they start with it on a very low level and only increase the intensity once their body feels comfortable. Increasing intensity does not always gain benefits. In the short term people who are active will feel tired after an activity which involves effort but this usually dissipates within a couple of hours. In the longer-term increased activity will have an impact on fatigue and well-being by reducing the effort that is required for day-to-day activities that form part of the person's routine. Other health benefits are also gained such as weight management and cholesterol management.

Stress

Stress and MS share a long relationship, however whilst it is accepted that stress has a role in MS, the exact nature of its involvement is unclear. What is well known is that stress is destructive and exhausting. Stress is a physical and hormonal process which produces unpleasant physical symptoms (eg headaches, tiredness and digestive problems), affects emotions (eg feelings of worry, inability to make decisions and irritability with others) and can alter behaviour (eg changes in sleeping patterns, changes in social patterns and relationships with others).

It is recognised that living with MS can be stressful, due to the uncertainty and unpredictability associated with the condition. People with MS often undergo many changes in different facets of their lives. Change of any type is accepted as having the potential to be stressful. People with MS often find that symptoms are harder to manage when they feel stressed. This does not mean that their MS has changed, but that the nervous system is finding it harder to work against the background of stress.

The combination of these factors means it is important for people with MS to manage stress. Techniques include:

  • identifying the aspects of your life that produce stress and changing them where possible
  • keeping things in perspective and developing methods of effective communication
  • keeping up positive experiences and taking time out as regularly as you need it
  • gaining support from others, either within your family and friends or from a specialist professional
  • undertaking exercise and using relaxation techniques (eg progressive muscular relaxation, yoga or guided imagery) regularly

Often by making small changes stress can be lowered and hence the negative effects reduced.

Lifestyle adjustment

Lifestyle adjustment involves making small changes to the way we carry out day to day activities and approach our lives in order to minimise the impact of MS symptoms in everyday life. This involves recognising the importance of working with, rather than against, symptoms and making small changes to account for these.

A common symptom that requires adjustments and illuminates this approach is fatigue. This complex symptom can have a substantial impact on day to day activities. Commonly used lifestyle adjustments include pacing and planning activities to avoid bunching of energy demanding tasks within a set time eg doing all housework in the morning and being tired all afternoon. Prioritising the activities that are most important and delegating others often allows satisfactory completion of tasks rather than an unsuccessful attempt at doing everything!

Taking regular rests is important. This involves both pacing an activity to avoid getting to the point of exhaustion as well as taking a planned rest at a set time of day. By using energy more effectively and thinking about the ways in which we 'spend' our energy, it is possible to make this appear to last longer and achieve more, eg sitting rather than standing to prepare a meal can allow the energy 'saved' to be used on undertaking a short exercise session or going on a family trip. Although these seem small, used in combination with other health promotion activities they can make a difference.

Nutrition

There are many debates about the role of nutrition and specific diets in MS and people with MS often ask if a particular diet may help. The role of diet in the cause and course of MS is outside the remit of this article and there does not appear to be a definitive answer. However, from a wellness perspective the importance of a balanced healthy diet is not in question.

Good nutritional practices that incorporate the recommended levels of fruit and vegetables, low levels of saturated fats and sugar and sufficient amounts of carbohydrates for energy requirements are encouraged, as well as adequate intake of fluids and fibre. A good diet allows us to maintain general feelings of health and vigour and maintains weight at the correct levels. Poor diet can lead to secondary problems of vitamin and mineral deficiencies and general feelings of sluggishness that can further complicate fatigue problems.

Weight gain is a problem for the population as a whole. As well as the physical risks of weight gain, including heart disease and high blood pressure, it can affect our emotions, further decreasing confidence and self-esteem. For the person with MS weight gain can also make mobility problems more difficult to manage. For a range of complex reasons related both directly to MS symptoms and general health it is important that a balanced diet is encouraged.

Responsible health practices

Responsible health practices involves recognising the importance of attending to your general health needs, as unfortunately people with MS remain at risk of the same health concerns as the general population. For this reason it is important that people with MS report any changes in health status to their GP and not fall into the assumption that all changes are MS related. This also involves undertaking health checks regularly such as breast or testicular examination and maintaining screening services such as cervical smear tests and well woman/man clinics.

Summary

It is hoped that this article provides a brief outline of the scope of wellness and the separate components of it. The complexity and interactions of all these activities cannot be fully described in this context and further discussion with your healthcare professional team is recommended. Hopefully this will serve as a motivator - remember the first step is the most difficult but small changes can often make big differences.

References

  1. Stuifbergen AK, Rogers S.
    Health promotion: an essential component of rehabilitation for persons with chronic disabling conditions.
    Advances in Nursing Science 1997:19(4);1-20.

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