Self Management
MS will always be a factor in your life so finding ways to manage the physical, emotional, cognitive and practical effects of MS is vital. There are many things you can do to help your mind and body cope better with the challenges that you meet and the challenges that may face your family.
Healthy lifestyle
A healthy lifestyle is an important part of anyone’s life. A good diet, exercise, relationships and social interaction are some of the facets of lifestyle that can help anyone keep their mind and body healthy. For people with MS a good lifestyle is very important too. Keeping yourself as healthy as possible can alleviate some of the symptoms, delay disability and sustain your mental well being.
Staying healthy is about recognising the way MS affects you and making choices that have a positive impact on your life and on the lives around you.
Smoking should be avoided as it can aggravate autoimmune conditions as well as having multiple other negative health effects.
Diet
You might find that symptoms of MS affect what you can eat or how you prepare meals. Learning new ways of cooking or using energy-saving tips can help you carry on eating what you enjoy. Adjusting to MS will not always mean changing your diet, but sometimes it can help. With careful planning, perhaps with the help of a dietician, you can make sure you meet your dietary needs, even if they change over time. Many people with MS report that they feel better when they eat well.
There is no particular MS diet although there are many regimes that have been popularised over the years. The SWANK diet revolves around increasing the amount of polyunsaturated fats and reducing the amount of saturated fats taken into the body. The BEST BET diet is based on the notion that a leaky gut contributes to the cause and symptoms of MS and that by eliminating dairy, grains and red meat the leaky gut will improve. The Overcoming MS diet advocates cutting out dairy and meat, and reducing fat intake – particularly saturated fat. It also recommends supplementation, particularly with omega 3 (in the form of fish oil or flaxseed oil) and vitamin D. There is little evidence available on any of these diets, although if followed sensibly they are unlikely to be harmful.
Some of the key minerals that may have an added benefit to people with MS include essential fatty acids and vitamin D. Fatty acids – particularly omega 3 and omega 6 – are found in oily fish, nuts and seeds and certain vegetables. Essential fatty acids have immunosuppressive and anti-inflammatory properties and have a role in our central nervous system and therefore play a role in protecting the myelin.
Preliminary research about vitamin D suggests that there may be an association between reduced levels of vitamin D and MS. Often referred to the ‘sunshine vitamin’, it can be produced naturally in the body when the skin becomes exposed to ultraviolet rays in sunshine. As MS is less prevalent in sunny climates, where vitamin D levels are higher, researchers are now exploring how it affects the risk of developing MS and also if it may have potential as a treatment for MS.
Exercise
Everyone benefits from being physically fit, including people with MS. However if MS affects you, there are specific exercises that can be targeted at certain problem areas to help keep you as fit and healthy as possible. All kinds of physical movement can be of benefit. It may be beneficial to get advice from a chartered physiotherapist with experience in treating people with MS to find an appropriate exercise programme that will best suit your needs. You can ask your neurologist or GP to refer you to your local physiotherapy service or access physiotherapy through your local MS Ireland branch if available.
Getting The Balance Right is MS Ireland’s physiotherapy and exercise programme designed for people with MS. We have carried out extensive research with the Physiotherapy Department of the University of Limerick and developed physiotherapy programmes that are beneficial and effective for people with MS. The research arm of the programme was accompanied by hundreds of physiotherapy and exercise sessions for people with all levels of ability. The programme is still operating and classes can be accessed through your local regional office of MS Ireland. Toolkits are also available for physiotherapists to use in their own local area.
Positive Attitude
Keeping positive is an important part of everyone’s life as the stresses of balancing all our commitments takes its toll. For someone with MS the normal challenges can often be added to as the symptoms of MS can make even the easiest task more complicated.
Like medications, physiotherapy or any other tool you use to manage your MS, keeping positive can become an important part of the way you live your life with MS. Indeed, many people with MS say that keeping positive is the most important tool in their arsenal. A positive attitude is free, you can access it whenever you want and it is infectious!
Not everyone is born with a positive attitude and even at the best of times keeping a smile on your face can be hard. However, you have the ability to adopt new attitudes and reinforce those that can be most helpful.
Select the topics below to learn more about how to self-manage MS
Having a healthy brain that functions well is important for people with MS. Taking positive steps to maintain brain health sooner rather than later can help improve long term outcomes for people with MS.
Our 100th issue of our MS News magazine features three articles on MS brain health from experts in the field.
The organisation MS Brain Health have produced a new guide on brain health and MS. This short guide is a resource to help people with MS understand how they can keep their brains as healthy as possible and request the highest possible standard of care from healthcare professionals. Download the guide here
This article features information and diagrams showing how MS affects the brain and central nervous system.
Hello Brain, designed by Dr Sabina Brennan from Trinity College, is an accessible and engaging site with lots of resources and tips for maintaining a healthy brain.
Depression and anxiety are common in people with MS. The ‘Societal Costs of MS’ study found that 38.5% of participants reported experiencing anxiety or depression or both. A lot of people who experience anxiety or depression also find that it is worse in winter months, and whilst Christmas is a wonderful and exciting time, it can also be a difficult period for people who are struggling with illness or other issues.
Download MS Ireland’s information booklet on mood, depression and emotions
These websites have some useful information including possible links between MS and depression:
WebMD have a resources on MS & Depression which can be accessed here.
The organisation Aware has lots of information on dealing with anxiety and depression on their website, including contacts for support organisations.
Exercise and keeping as active as possible are cornerstones of managing MS. With the summer coming, it can be a good time to start thinking about getting more active. Below is some useful information and tips for exercising safely with MS.
MS Ireland’s regional offices organise a range of exercise programmes and classes including yoga and Getting the Balance Right, our physiotherapy and exercise programme for people with MS contact your local regional office for more information.
You will find some useful information and a video from the UK MS Society here.
Click here for tips on safe exercising and how to avoid overheating.
Fatigue can be one of the most prevalent and problematic of all MS symptoms. Studies suggest as many as 80% of people with MS will experience fatigue. Fatigue can also be the symptom that is most associated with causing people to reduce working hours or stop working and it can cause huge problems for social and family life.
However, there are ways to manage fatigue and try and minimise its impact. Below are some articles with information and tips on dealing with fatigue.
MS Society UK have detailed information on what causes fatigue in MS and some advice for managing it.
Information on different types of fatigue in MS and eight tips for fighting fatigue.
Advice on what to do about fatigue including assessing your personal situation, conserving energy and dealing with the stress that fatigue can cause
Taking medications as prescribed is a very important part of managing MS. Some studies, such as this one from NCBI indicate alarmingly low levels of adherence to disease modifying therapies (DMTs).
This article by the National MS Society in the US lists some commonly stated reasons why people stop taking medications, including side effects and dislike of needles.
If you are having problems taking medications as prescribed and/or you are experiencing side effects, you should discuss it with your Neurologist or MS Nurse. Most of the pharmaceutical companies also provide support services for people taking their medications. This may be a visiting nurse service, or a telephone information line. Your MS Nurse or Neurologist should be able to provide you with information and referrals for these services.
MS & Me Blogger Joan Jordan wrote a piece on the various ways that you can report side effects and the importance of doing so.
Renewing your prescriptions for your MS medications
- Always make sure your prescription for your MS medication is up to date
- If you require a new prescription from your neurologist, please give at least two weeks’ notice to the MS nurse or the neurology secretary
- Take into consideration the time it will take to write the prescription and for it to be posted to your home or faxed to your pharmacy
- Pharmacists cannot extend prescriptions for certain medications. Talk to your pharmacist for more information
- Give the pharmacist a weeks’ notice to order your new medication, this will ensure that you never run out!
- If a consultant prescribes a drug for life-long or even a period extending beyond six months it is acceptable for the GP to write a (renewal) prescription to cover the High Tech drug in question. It is vital that the consultant (i.e. the Neurologist) instructs this way – there is a section on the High Tech form asking for “length of therapy” where they can do so. People with MS can ask their Neurologists if this is a suitable option for them.
Recent research suggests cognitive difficulties affect approximately 50-60% of people with multiple sclerosis. For example, many people with MS can find it harder to recall information, follow conversations or think things through. For most people with MS, cognition issues remain relatively mild although they can still cause difficulties in daily life.
Download MS Ireland’s booklet on memory and thinking
The MS Society UK has some great information on memory and thinking including suggested coping strategies and tips for managing cognitive issues
Web MD has some information on the signs and symptoms of cognitive difficulties, and some information on potential therapies that are being researched.
Some further advice from Everyday Health about thinking and memory problems.
Mindfulness meditation has become increasingly popular in recent years. A growing body of research has explored its applications in terms of managing various MS symptoms including fatigue, cognition issues, stress, depression and anxiety. Jon Kabat-Zinn, who is credited with establishing mindfulness as a mainstream practice, defines it as “paying attention in a particular way: on purpose, in the present moment, and non-judgmentally”.
The organisation Overcoming Multiple Sclerosis have detailed information on mindfulness and advice for practicing it.
An article from Everyday Health explains how mindfulness might help with managing the impact of MS symptoms and some tips for practicing it.
Read a systematic review looking at some of the scientific research into mindfulness and MS.
It is important to understand why sometimes we don’t achieve our goals – usually, it is because we have not thought carefully enough about what goals to set and why we are setting them. Sometimes we may set goals that are not realistic, or we may simply not have gone through a proper process of analysing what it is we would like to change. Sometimes we may also allow others to influence us and end up putting pressure on ourselves to achieve things that aren’t appropriate to our own situations.
Goals may be to do with lifestyle changes (diet, exercise etc.) or they may be to do with career progression, financial management, family life - anything. For a person with MS, goals may also be about managing symptoms such as fatigue on a daily basis and setting parameters for what is realistic and manageable.
One commonly used model for goal setting is the SMART system – setting goals that are Specific, Measureable, Achievable, Relevant and Time-based.
We look at positive thinking and challenging negative thoughts.
Spring and Easter are traditionally associated with hope, positivity and new beginnings. Some people with MS can find staying positive a real challenge – the Societal Costs of MS report found that approximately 38% of people with MS had been treated for depression and/or anxiety since the onset of MS.
If you feel you are suffering from depression or anxiety, you should talk to your GP for further advice. However, there are also things we can all do to try and maintain a positive outlook and stop ourselves from getting trapped in cycles of negative thoughts.
This article from Everyday Health lists 8 ways to stay positive with multiple sclerosis
Negative ‘self-talk’ (how we talk to ourselves and think about various aspects of our lives) can often take over when you are in a difficult situation. This article talks about how we can challenge negative and damaging self-talk
We look at some information on personal relationships and MS.
The National MS Society (US)
-has some useful information and videos on some of the difficulties that can arise in a relationship when one partner is affected by MS, and advice for dealing with them.
MS Society UK
- this detailed and comprehensive resource from MS Society UK contains information and advice on a number of issues relating to relationships and sex.
The ability to self-monitor can be crucial to managing a chronic illness. Becoming aware of symptoms, how they affect us and possible triggers can help to reduce their impact on daily life. Here we look at some different ways that self-monitoring might help with managing MS.
Keeping a diary specifically to monitor your MS can be a helpful tool, recording how your MS alters in response to different factors - such as activity levels, stress or diet - or at different times. This information will allow you to understand what affects your MS and how. Some advice from the MS Trust on keeping a symptom diary
We all have to deal with stress from time to time, but for people with MS stress can be exacerbated by dealing with symptoms and the reality of daily life with a chronic illness. Evidence also suggests that stress may make MS symptoms worse. Here we look at some ways to manage stress and minimise its impact.
One study that looked at the link between stress and MS symptoms, and also some handy stress reduction tips
Some advice on stress management including recognising the warning signs of stress, what can be done to reduce stress and learning to relax.
Some information on stress and anxiety in MS from MS Society UK.
Additional information is available on MSIF's Resource Hub
If stress continues to be a problem for you over time, you should consult your GP.