M20.378_ Essentials 28_Artwork - MS Society UK

M20.378_ Essentials 28_Artwork

5/3/13

12:42

Page 1

First edition March 2009 Revised and reprinted March 2013

MS Essentials

28

For people living with MS

This publication is available in large print (22 point) Call 020 8438 0799 or email [email protected]

Living with the effects of MS

Multiple sclerosis (MS) is an unpredictable, uninvited guest that arrives in a person’s life, and the lives of those around them, and is there to stay. Very few people are prepared for the emotional impact a diagnosis of MS brings to their lives. People’s reactions to MS can be as varied, and as unpredictable, as the condition itself. There is no ‘right’ way to react to a diagnosis, or to a change in symptoms, condition or circumstances. Whatever reaction you experience, it really will be ‘normal’ – you won’t be alone in feeling the way you do, even if it seems different right now to those around you. Everyone has different personalities, coping styles and strengths, and everyone will find different approaches helpful when dealing with the emotional impact of MS. These approaches might change over time. This booklet describes how a person with MS can prepare for and manage the emotional impact of MS. Nobody can control every emotion and remain positive and happy all the time, and that is not what this booklet is aiming for. But many people find the suggestions described here helpful for managing the emotional effects of MS.

Contents 02 The diagnosis 06 Dealing with loss 11 Taking control of emotional responses to MS 21 Cognitive changes and emotions 23 The impact of MS on others 28 Getting the right support 29 Further information

Some parts of this booklet will seem more relevant to you than others, so you might want to dip in and out, rather than read it straight through. Many of the ideas in this booklet can be explored more fully with a professional trained in dealing with emotional changes – a counsellor, psychiatrist or clinical psychologist, for example. As well as this booklet, you might want to read Just diagnosed – an introduction to MS or What is MS? (see Further information). You can call or email the MS national Helpline to talk to someone about any aspect of living with MS: Freephone 0808 800 8000 or [email protected]


5/3/13

The diagnosis

12:42

Page 2

Receiving a diagnosis of MS can cause many different reactions. MS might have been discussed with you as a possible explanation for symptoms you experienced, but it might equally have been a ‘bolt from the blue’. Getting the diagnosis could raise as many new questions as it answers, and people’s reactions will vary – from person to person and over time.

Reactions vary For some people, a diagnosis of MS can be overwhelming, frightening, confusing and distressing. For others it can be a relief, especially if they were wondering if they were going mad or they had symptoms for which no cause could be found. Some might even hear the diagnosis, leave the consultants room and return to normal daily life without giving it another thought until the next ‘real’ change in circumstances. Others might ‘shut down’ emotionally. For many, it’s a combination of all the above. Ultimately, it is important to recognise that it is a unique process – there is no right way to react and whatever your reaction it is part of a normal process. Remember, you are the same person you have always been. MS may require you to make adjustments to how you approach different aspects of your life over time, but you are the same person after diagnosis as you were before. One way of understanding the initial reaction is to liken it to a roller coaster ride. At first there is a scary anticipation of the ride to follow, then once seated on the ride the realisation there is no turning back. The ride then begins and a significant number of emotions are experienced – there are highs and lows. And, like a roller coaster, some people are able to cope and others find it too frightening.

Living with the effects of MS © MS Society 03/13

Some of the initial reactions people can experience:

2

Shock

Anger

Denial

Hope

Optimism

Fear

Confusion

Panic

Isolation

Sadness

Anxiety

Relief

5/3/13

12:42

Page 3

These reactions might be experienced not only by the person who is given the diagnosis, but also by those around them. It is possible that reactions will be different for each family member and close friend. For example, the person with MS might feel relief, while their partner is in denial. This experience is very common.

Questions? A diagnosis can create emotional reactions. It can also raise many questions. Questions frequently asked include: Q What did I do wrong? Could I have prevented this? Why me? A These are very natural questions. Whenever something bad happens we want to know why. The precise cause of MS is a mystery: there is nothing you did to get MS and there is nothing you could have done to prevent it. Q Will I need a wheelchair? Do I have to stop work? What will happen to me? How will my life change? A These are questions you will revisit time and time again, for the rest of your life. The truth is, no one can be certain how your MS will affect you. Although many doctors agree that the first five to seven years of MS can be a good predictor of your future prognosis, many predictions made for MS are based on averages across many people. As with any average, people can be on either side of this ‘average experience’ – the average does not always accurately reflect the experiences of an individual. Learning how to deal with unpredictability and being prepared to manage changes will help you take back the control you might feel MS has taken away. Q Can I have children? A The good news is that there is no reason having MS should stop you being successful parents. MS doesn’t affect fertility. Of course, a parent with MS may be faced with more day-to-day problems in looking after children than the average parent – but these are not insurmountable. For more information about having children, read the MS Society booklets, Sex, intimacy and relationships and Women’s health. Many people worry that their children will also get MS. There is a genetic aspect to MS, but it is by no means the whole story and MS is not directly inherited. There is only around a two per cent chance of developing MS if one parent has MS. There is more information in the MS Society factsheet Genes and MS.



3


5/3/13

12:42

Page 4

Q Can I help myself? A The answer is yes! There are many ways of helping yourself and these might change at different times. Taking care of your body will help you feel healthier, so exercise and diet are important. Many people find prescribed medications and complementary therapies helpful. And your emotional health is also very important to living successfully with MS. Strong links have been discovered in the past few years between emotions and health: they are a key element in self care. Some different techniques for emotional self care will be talked about in further sections in this booklet. Q Do I need to tell my family, friends, colleagues? A There is no rule for everyone to follow with this. Some people want to tell everyone, especially if they have been unwell for a time with no apparent reason. Others want to keep it a secret, telling only those they feel need to know. Talking about your diagnosis can be a way of lessening the sense of feeling alone with your MS and gaining support from others. One way of helping you decide who to tell is to draw a small circle on a piece of paper – that is you. Now draw another circle around it and write the names of those closest to you – family, close friends, and so on. Call that the ‘inner circle’. Then draw another circle and write names of those people who are close but not as close as the inner circle – extended family, work colleagues. You can continue drawing as many circles as you need ending with a circle that includes names of people you might class as occasional acquaintances. Most people find that they are happy to tell people in the inner circle and maybe the next circle, but decide that those on the outer circle are only given information on a need-to-know basis. You might use this exercise at different times of your life as people’s roles in your life change.

OCCASIONAL ACQUAINTANCES ACQUAINTANCES


EXTENDED FAMILY, WORK COLLEAGUES

4

FAMILY, CLOSE FRIENDS

YOU

5/3/13

12:42

Page 5

There are not always clear answers to the questions above, which can be frustrating. Partly, it is because of the unpredictability of the condition – but also because it is difficult to predict anything in life with certainty. This can increase distress and the sense of losing control. Often these questions come from the emotions being experienced. For example: ‘Why did this happen to me?’ – it is normal to want to know why things go wrong and as MS has no known cause it is easier to question yourself. Asking ‘What if...?’ or ‘What will...?’ is a normal response to the unpredictability of MS. But getting stuck asking these questions can cause needless anxiety. Remember that life in general is unpredictable and you’ve probably dealt with unpredictable areas of life in the past. You can find ways to do the same with MS. Positive reactions Receiving a diagnosis of MS can be negative, of course, but not all people react in a negative way. Some people find that the diagnosis provides an opportunity for change in their lives. There are many stories of people changing their career paths, changing their lifestyles, getting fit and so on. Receiving the diagnosis can be a ‘turning point’ and can be a time where the future is re-evaluated in a proactive way.



5


Dealing with loss

5/3/13

12:42

Page 6

One way of thinking about people’s reactions to the diagnosis is to think about it in terms of ‘bereavement’. For many people it is seen as a time of many losses – for example, loss of health, loss of self-image, loss of expectation and loss of employment. These losses lead to the experience of grief. This section focuses on helping you understand and recognise emotions associated with grieving. It also suggests ways of grieving healthily – dealing effectively with very natural reactions to living with MS. Where you see this symbol, there are suggested strategies for dealing with grief.

Why do I need to understand grieving? Many people ask the question, ‘Why do I need to understand grieving? MS isn’t going to kill me’. That’s true, but grieving is actually a normal response to any loss. Even though it is a very distressing and emotional experience, it is nevertheless an important and healthy part of life. Grief allows us to survive change; it can help you to find new and creative ways to deal with change. In MS, grieving can be seen as a tool that helps in re-evaluating life, revising your view of life, changing your life where needed – with the goal of adapting to any losses you might experience. Grief can be a positive response to loss.


Being diagnosed with a long-term condition can force people to confront their own fears, limitations and vulnerabilities. While it might seem overwhelming to start with, healthy grieving enables you to let go of the past and grab hold of the future. It is also important to recognise that these feelings of grief can happen at different stages of life – not only at diagnosis. In other words, if your condition changes you might find you experience these grief feelings again.

6

5/3/13

12:42

Page 7

The process of grief The process of grief will be different for everyone, but it is widely recognised that there are five stages of grief. People experience these stages to different degrees and the whole process can last from a few days or weeks through to several months with intensity of emotions gradually decreasing. Like MS, these stages are not predictable and you might find you do not go through them all in a neat order. You might find you skip one of the stages, revisit a previously experienced stage or even experience them simultaneously. These five stages are: Denial Anger Bargaining Depression or sadness Acceptance Let’s look at these stages in more detail: Denial. This is often experienced when the diagnosis of MS is first given. Often people think the consultant has made a mistake or think ‘This can’t be happening’. Denial is an effective coping mechanism allowing people to avoid thoughts and feelings which are too distressing to face. It might be a momentary flash in the mind, or it could last quite a bit longer. As a healthy coping mechanism, it gives your mind respite before needing to deal with reality – the diagnosis. However, some people find themselves getting stuck in denial. This is when it can become a problem. Without accepting the diagnosis, it’s hard to get the information you need, to make decisions about treatments, support and so on. Anger. The key to a healthy anger is to direct the anger. You might be angry with the doctor for telling you the diagnosis, or at yourself, believing you could have stopped MS entering your life. You might be angry at your family – pushing them away when they try to comfort or support you. You might be angry at a higher power for allowing you to have MS, or angry at the medical community for not having a cure or understanding MS. In reality, this list can be very long and is as individual as MS is to each person. It’s quite natural to feel all this anger, but it can be exhausting and stop you from moving forward. So the challenge is to find ways of using your anger in a positive way – make it work for you, rather than against you.



7


5/3/13

12:42

Page 8

When you find yourself getting angry, ask yourself these questions: What is it that is making me angry? What is the real issue here? What am I thinking and feeling? What is it I want to accomplish? Who is responsible for what? What if I want to change? What things am I willing to do or unwilling to do? These questions might help you think more clearly about the situation you are experiencing, and as a result enable you to make some conscious decisions. Anger can energise and help you find answers, solve problems and overcome obstacles. One helpful way to deal with anger is to identify your triggers. If you can work out when you are more likely to lose your temper you can take steps to control it. For example, if you recognise that being tired, hot or hungry makes you more irritable, then resting, cooling yourself down or eating will help you. Being angry at the diagnosis of MS is normal, so verbalising these feelings to yourself, or those around you, can be helpful: ‘I am angry at MS, but I am not angry at you’. Speaking the feeling can bring relief and allows others to support and encourage you. Bargaining. In this stage people try to make deals with fate, with their doctors, or with their family: ‘If you help me through this, I will change my lifestyle (or exercise more, or become a nicer person, and so on)’. As time moves on, and symptoms lessen or emotions become more stable, any decisions people make in this stage (for example, healthy eating or exercise) are often put to one side and unhealthy habits picked back up. This is the stage of attempting to avoid the inevitable.


Depression or sadness. This is the point in the process when the feelings of loss, both past and current, can appear to be overwhelming. This is the stage when people might be weepy, distressed or withdrawn. Although the term ‘depression’ is often used here, this stage is perhaps best described as a feeling of deep sadness. Sadness can be defined as an appropriate reaction in proportion to an event you experience. The event could be receiving a diagnosis of MS or experiencing a relapse. And it is normal and appropriate for this to cause sadness.

8

Allow yourself to be sad: cry, talk, spoil yourself by having a duvet day, watch a movie – just give yourself permission to be sad. The best way to deal with sadness is to experience it. Usually, sadness soon passes and you will find yourself moving forward into life again. Occasionally people can move from sadness into depression and if you become concerned then speak to your GP, MS nurse or other health care professional. For more about recognising depression, see page 17.

5/3/13

12:42

Page 9

Acceptance. This is the stage where people feel they can accept what is happening and finally feel as though they can move forward. It is a time of stability. It can be a stage where you feel a void of emotion. This stage should not be mistaken for a ‘happy phase’. Acceptance may be having more emotionally good days than bad days. You cannot replace what has been lost, but this is the time when you start to recognise the new reality or no longer deny feelings but listen to them and use them to move, change, grow and evolve. Some final thoughts about the grieving process: Some final thoughts about the grieving process: You might experience a wide range of emotions including anxiety, shock, avoidance, sadness, anger, apathy and despondency. You may experience physical symptoms including crying, shortness of breath, restlessness, aches and pains, sleeplessness or fatigue. Grief can make you feel as though you are going crazy – remind yourself you are going through a natural process. It is important to allow yourself to grieve otherwise you can get ‘stuck’. Grieving might happen at the point of your diagnosis or at times of relapse or changes in your condition – this is normal. The grief process may not go step by step; you may go from one stage to another and back again, you may even miss a stage. The details of each person’s experience will be different. Grief has been described as a gift, which has the power to heal. This may seem like a strangely positive description, but one leading psychologist says ‘it transforms the wounded, broken soul’. It is a normal process that each human being experiences in life.

Here are some suggested strategies for dealing with grief. This is not a comprehensive list. Some of the resources listed in this booklet (see Further information) have more suggestions. •

Stop asking ‘Why?’ Instead, ask ‘What can I do now?’.

•

Allow the pain to be there – acknowledge you are hurting.

•

Face the loss you are experiencing.

•

Rest when you need to.

•

Spoil yourself.

•

Ask for help – from family, friends or professionals.



9



10

5/3/13

12:42

Page 10

•

Accept support.

•

Eat regularly.

•

Keep to your normal routine where possible – but remember you might sometimes need to make adjustments.

•

Exercise.

•

Postpone major decisions.

•

Do not compare your grief to other people’s grief – you are unique.

•

Remind yourself grief has no allotted time – give yourself permission to go through it at your pace. If you think you are getting ‘stuck’, ask for help.

•

Don’t overdo things.

•

Remind yourself you will survive – this feeling will pass.

•

Socialise where possible.

•

Find one thing daily you can be grateful for.

•

Make a list of these things you can be grateful for.

•

Help others.

5/3/13

Taking control of emotional responses to MS

12:42

Page 11

It is not surprising that at times you might feel overwhelmed by the emotions MS brings into play, but the good news is you do not need to be bullied by them. You can take control using some of the suggested strategies – marked with this symbol on the following pages. These look at ways to manage fear and anxiety, deal with stress, recognise and treat depression, and raise your self-esteem. There is no ‘right’ coping strategy that works for everyone. Remember, you will have your own way of dealing with difficult situations. The following ideas are only that – ideas.

Managing fear and anxiety Research has indicated that anxiety is common, affecting about a third of people with MS. Fear and anxiety are understandable emotions in MS. As mentioned before, a diagnosis of MS brings with it uncertainty and a sense of the unknown. Being fearful is normal when you are faced with the unknown, and living with MS means living with unpredictability. When you feel unsure, fear comes along and can very easily take control. Fear can appear to be paralysing or spiral you into panic. However you do not have to be a slave to fear, and fear can be a useful tool of motivation. Fear is part of the flight or fight mechanism – it is the rush of adrenaline that sets our hearts pounding, makes our mouth dry, upsets our stomachs and tells us we need to act quickly in the dangerous situation we are facing – it motivates us to act. Once we have acted, the fear subsides and we move on with our lives. Chronic ongoing fear, however, is destructive, leading to generalised anxiety – catching us in a cycle of anxiety in which we feel trapped. The most frequently reported fears from people with MS are around future level of disability. It is normal to wonder whether you might need to use a wheelchair; after all, isn’t that what the media often portray – ‘MS people’ in wheelchairs. It is normal to wonder whether you might need to give up work or whether you can be a good parent. But continually looking to the future can paralyse you emotionally and can stunt your future well before the physical condition can. No one can predict the future with MS. Some people deal with this by living a day at a time. This doesn’t mean putting off planning or burying your head in the sand, but it might mean not thinking the worst will happen tomorrow. There will be times you need to plan for the future – for example, considering the possibility of moving or adapting your house, having children, and so on. However, consistently worrying about the future can affect our ability to plan well and to make reasoned decisions.



11


5/3/13

12:42

Page 12

If you feel fear and anxiety have taken control of your life then there are some strategies you might find helpful. There are many more than the five examples given here: 1 Set a ‘worry time’. Make an appointment with yourself to focus on worrying for five minutes each morning and evening. Remember – five minutes – no more and no less. Sit down somewhere quiet, set an alarm clock to go off five minutes later and focus on your fears and anxieties. When the alarm goes off get up and continue with your daily routines. You might still find you worry throughout the day but tell yourself that you will think about the worry or fear at your next appointment. This strategy can produce amazing results: many people who have used this say that after a few weeks they find it hard to fill their appointments with fears, and that many of the previous fears have disappeared. 2 Share fear. As fear and anxiety can become overwhelming, telling others what you are feeling can be very beneficial. It allows others the opportunity to listen, reassure and help you put the fear and anxieties into perspective. When you get pulled down with fears and anxieties over symptoms, or the effects MS is having, you can lose sight of the fact you will not always feel the way you do. Sharing your fears allows others to remind you there is light at the end of the tunnel.


3 Write a ‘coping with anxiety list’. Place it somewhere you can see it to be reminded of things you can do to help yourself. Things you might like to include on this list:

12

•

identify your fear or anxiety and write it down

•

tell someone you trust how you are feeling

•

use calming breathing (see page 16)

•

do an activity you enjoy to divert yourself

•

if certain news programmes, magazines, books or people are increasing your fear and anxiety, try to avoid them for a while

•

take a relaxing bath

•

ask for a hug

5/3/13

12:42

Page 13

4 Learn to recognise the way that your thinking negatively affects your feelings and emotions. There are a number of ‘thinking errors’ people make that increase feelings of anxiety and fear. Some of these thinking errors are: • ‘Black

and white’ or ‘all or nothing’ thinking: thinking about things in black or white, with no shades of grey. With a symptom like fatigue it can be easy to think ‘I am so tired today I will never cope with work tomorrow. In fact, maybe I will have to stop working altogether’. Reminding yourself that having a rest will recharge you and give you energy for tomorrow helps you take back control. You can often control resting – it is in your control.

•

Exaggerated thinking: focusing on something and making it larger than life. Maybe you forgot an important event or made a mistake at work due to cognitive problems you are experiencing. You start to believe ‘I am incapable of simple tasks; I am no longer a competent person’. Actually, you successfully completed many tasks in work or at home that day but the one mistake has overshadowed all the positive achievements. So instead of giving yourself credit you have demoted yourself. For each time you think like this, replace the thought with two positive achievements.

•

Negative bias: focusing on the negative. Many people with MS focus on how they were in the past and the abilities they used to have. This can overlook any positive changes in their life they may have made despite their condition.

• ‘Should

or ought’ thinking: telling yourself that you should or ought to be able to do something. For example, ‘I should be able to walk my child to school’. Telling yourself you should be able to do, or you ought to do, only increases guilt, anger and anxiety – it is destructive not constructive.

5 Start a negative thoughts and positive answers journal. Try this exercise to help you recognise the negative thinking patterns you employ, to re-train your mind to think more positively and productively and to learn new ways of perceiving situations. Get a notebook and on the pages draw two columns. Title the left side column ‘Negative thoughts’ and the right side column ‘Positive answers’. In the negative thoughts column write down a negative thought you are having. In the right side column respond to that thought by writing down as many positive answers you can think of. Keep this journal for at least a week. This will help you build a habit of using ‘self-talk’ to challenge negative thoughts. Self-talk is the internal dialogue we use to view the world, and to explain situations to ourselves – the natural way we think things through.

Professional support If the anxiety you experience feels totally overwhelming, and if the above strategies are not helping, seek help – from your GP, MS nurse or other health or social care professional.



13


5/3/13

12:42

Page 14

You may find it helpful to talk to a clinical psychologist who understands MS and anxiety or fear. They can help you find ways to change your thinking styles. Many people feel they benefit from working with a clinical psychologist, even if they had never considered it before and perhaps initially felt it ‘wasn’t for them’. There are many more thinking patterns – and strategies to deal with them. You can find more information in the books from the Overcoming... series. For details, see the Further information section at the end of this booklet.

Dealing with stress People with MS often recognise that stress impacts on their condition in some way. And there has been some research into this area – but with no conclusive results. However, it is widely recognised that stress affects a body’s ability to fight disease. Learning to recognise the connection between stress and exacerbation of symptoms can help you feel more in control of your MS. The good news is that, like depression, stress is easily treated, producing positive results. You may remember from an earlier section of this booklet (Managing fear and anxiety, page 11) about the ‘fight-or-flight’ response. This is an automatic response system that enables us to respond to perceived danger and threats. When we feel fearful or stressed, the body produces adrenaline and this in turn produces physical effects. You can experience a pounding heart, excessive sweating, feeling faint or dizzy, a dry mouth, breathing difficulties, or bowel and urinary problems. In nature, this physical response can be very useful – it prepares you for immediate action when threatened by danger. But if this heightened state of alertness continues for lengthy periods of time it can affect your health. Long-term stress can cause physical problems including impaired memory, headaches and high blood pressure.


Not only can stress cause physical changes, but it also causes emotional reactions. Some emotional reactions caused by stress include: being anxious or worried, becoming irritable, feeling depressed or low in mood, experiencing a sense of being overwhelmed and becoming very pessimistic. Other common experiences are sleep disturbances and nightmares.

14

Stress is a normal part of life for everyone, but in addition to facing normal everyday stresses, people with MS have to deal with the unpredictability and pressures the condition itself causes. MS can affect many areas of life, such as the ability to work, cognitive functioning, friendships and relationships, housework and parenting. If all these areas of functioning are being affected by your MS, it is likely you will experience more stress. It is impossible to eliminate stress totally from your life but there are many techniques you can employ to help manage it and take back control – stress management.

5/3/13

12:42

Page 15

Stress management techniques provide effective ways to cope with or alter stressful situations. There are several ways of coping with stress and the following are some suggestions to help yourself: 1 Learning to recognise what you can control and what you can’t control. When you find yourself stressed ask yourself ‘Is this something I have any control over?’ If the answer is yes, take any action you know will relieve the stress. It might be something as simple as saying no to your boss. If the answer to your question is no, then ‘let go’ of the situation that is causing the stress. Remind yourself of the well known message from the American philosopher Reinhold Niebuhr: ‘Grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference’. 2 If you are struggling with the above, seek support from someone you trust. Often by talking through issues with someone else they help you to see things in a different light. 3 Set realistic goals and plan ahead. With MS being so unpredictable, even the most careful planning can be upset, but having contingency plans in place for everyday activities could reduce stress if the unexpected happens. It’s sometimes impossible to avoid the stress and frustration of a cancelled day out, or a delayed task you wanted to get done. In these cases it could be a case of managing everyone’s expectations. Let those who need to know that there is a chance – however small it might be – that the MS could delay your plans. 4 Monitor your own negative self-talk and thinking styles by challenging the way you think. Is your automatic reaction a true representation of what is happening? 5 Keep a stress diary for two months. This can help you identify the situations that cause you stress. Record how you reacted to the difficulty that caused you stress and also how you might have been able to avoid the situation. If you feel the stressful situation could have been avoided then record how and what you will do in the future to help yourself. After the two months, you can use the information you recorded to create an effective stress management plan that is unique to your life and needs. 6 Redefine relationships. Look at ways you might be able to redefine family, social and work relationships, maybe exchanging one responsibility and area of control for another which is more feasible for you. 7 Consider complementary therapies. These could include massage, meditation, yoga, t’ai chi or aromatherapy. 8 Exercise. This can be a very useful tool in managing stress. Using your body helps to let off steam, releasing stress and anxiety. Exercise also helps with sleep and can give you more energy, both of which can help reduce your stress levels.



15


5/3/13

12:42

Page 16

9 Find ordinary everyday activities that are enjoyable to you. Find activities not associated with the things which cause you stress – perhaps taking a walk, sitting outside and hearing the birds and the breeze, listening to music, reading or gardening. Or, in the words of the old saying: stop and smell the roses. 10 Teach yourself relaxation and calm breathing techniques. You can buy CDs and books to help you with this, or ask an MS nurse, doctor or other health care professional. The MS Society has free relaxation tapes – contact the information team (see Further information).

How do I know if I am depressed? Depression is defined as a disorder characterised by a persistently low mood most of the time, lasting for a few weeks or more. It can cause distress and affect social and work abilities, with sadness and emptiness accompanying the low mood. Up to 50 per cent of people with MS will have a major depressive episode during their lifetime. For the general population, this figure is only 10 per cent, so the odds are increased. But while it is known that depression is high in the MS population, it is often unrecognised by both people with MS and health care professionals, and therefore frequently left untreated. This is a concern because the good news is that depression can be successfully treated. What causes depression in MS? It can be argued that the challenge of an unpredictable, long-term condition can understandably cause people to be depressed. However the picture is bigger than just having to deal with MS.


1 Diagnosis. As mentioned on page 8, being given a diagnosis can cause a time of sadness which some might term as depression. If this mood is not lifting, a review by a health care professional might be necessary.

16

2 Reaction. Depression in MS may also be reactive – a reaction to the situation. In other words, the person is depressed because of their circumstances, be it their MS diagnosis or something else going on in their lives. The changes in physical abilities due to MS often lead to a loss of self-esteem and a change in self-image. The person with MS might feel like a burden, unattractive and useless, all of which can contribute to depression. 3 Relapses. Sometimes a relapse of symptoms can trigger depression. This is often due to fear of the unknown (‘What if I don’t recover?’) and being reminded of the unpredictability of MS. This type of depression can often be treated successfully using a talking therapy (counselling or psychotherapy).

5/3/13

12:42

Page 17

4 Changes to the brain. It is thought that physiological changes to the nervous system caused by MS damage might be responsible for depression in people with MS. The damage that occurs can affect the emotional centres of the brain and it is this that might explain why depression is seen in larger numbers in MS when compared with other chronic illnesses. 5 Medication side effects. Some medications given to help with the symptoms of MS can cause depression. If you notice any changes in your mood following having any medication, or are concerned, speak to your consultant or MS nurse. Symptoms of depression: It can be difficult to recognise depression in MS because some of the MS symptoms imitate symptoms of depression – for example, fatigue, loss of energy, sleeplessness, loss of libido or cognitive changes. Also, it can be difficult to decide whether the sadness experienced at times of grieving (see page 6) is actually depression. The rule of thumb here would be that major depression lasts much longer than transient feelings of sadness. In order for a diagnosis of depression to be made, the doctor would expect to see at least five of the following ten symptoms being experienced daily for up to two weeks: •

feelings of hopelessness, sadness or despair

•

loss of pleasure or interest in most daily activities

•

significant weight loss or gain; or an increase or decrease in appetite

•

persistent sleep problems, either insomnia or excessive sleep

•

ongoing fatigue and loss of energy

•

feelings of personal worthlessness

•

inappropriate and excessive guilt

•

inability to concentrate or make decisions

•

observable restlessness or slowed movement

•

recurrent thoughts of death, violence or suicide

Depression can be categorised as mild, moderate or severe, and can impact on daily functioning. If, after reading the list on the previous page, you feel you might have depression, please seek help immediately from your GP. Remember, there are many treatments available for depression.



17


5/3/13

12:42

Page 18

Treatments for depression Medication is not the only way to treat depression. Research indicates that the best way to treat depression is to use a combination of medication and therapy. Treatment of depression generally uses a combination of addressing the root causes (for example, treatable MS symptoms) and making changes in needed social support. But antidepressant medication can be used. If it is prescribed, remember that results may not be instant – it can take several weeks for antidepressants to start working. Individual therapeutic intervention (working with a psychologist, for example) can be extremely helpful in the treatment of depression. Sometimes relationship or family counselling can be helpful. For more information, see the MS Society booklet Mood, depression and emotions.

Helping yourself 1 Prepare for episodes of change. Knowing and expecting that changes may occur can help to lessen the shock and fear of them, which in turn dilutes their impact on your life. 2 Work hard at maintaining rewarding activities. You might need to modify the activities which previously gave you enjoyment and satisfaction, but this is positive adaptation, not a negative change. Continuing enjoyable activities helps to maintain enjoyment in life and by adapting, that is what you are choosing to do. 3 Challenge your negative thinking. Avoid negative, gloomy and catastrophic thinking. Your situation may be bad, but it’s not 100 per cent awful 100 per cent of the time.


4 If you feel you can’t cope. Try to cope for just five minutes, and when you do cope with five minutes, use that to remind yourself that you can cope – you have proved it by doing it.

18

5 Develop new skills to deal with life. You might need help to change your thinking style to help deal with depression, and talking with a clinical psychologist who understands MS and depression is a good place to start. 6 Talk with your local GP about your depression. See if antidepressant medication would be beneficial to you in your particular situation. There are many more strategies that might help. You can find more in some of the resources listed in Further information.

5/3/13

12:42

Page 19

Raising your self-esteem Following the diagnosis of MS and at times when MS impacts on your life, it is normal to ask, ‘Who am I now?’ Health professionals, websites and others rightly say ‘You are not your MS’. But at a time when you perceive your identity is being altered, your self-esteem can be affected. Having MS can wear down your sense of who you are, causing you to ask what you can do, what you are capable of, and ultimately who you are. Having MS may cause you to re-adjust your identity. Self-esteem is not built by an ‘external construction company’. It is built by an internal construction company that you are in control of. You have control over your own opinions of yourself – good and bad. This means you have the choice of your self-image – you can adjust your expectations and values. There is truth in the saying that you can be your own worst enemy instead of your own best friend. People frequently spend much of their time beating themselves up and trying to live up to their unreachable expectations – they set themselves up to fail. When MS starts to diminish abilities, whether actual or perceived, it is not uncommon to struggle with self-esteem and self-image. MS does not have to destroy your self-esteem or self-image. There are things you can do to stop the process of destruction. Defending yourself against the inner critic running your ‘internal construction company’ not only builds a positive sense of self but can also have a positive impact on your health. 1 Listen to your self criticisms. Are you telling yourself you are not as good or as useful as before you had MS? If the answer is yes then ask yourself, ‘How has MS changed me?’ Be specific in your answers. By doing this you may unearth some of the undermining messages you are telling yourself. 2 Share your thoughts. If you can, share your responses from the above exercise with someone close to you – do they think the same? You might find they don’t see the changes you do and they may be able to encourage you to consider things in a more positive light. 3 Use positive affirmations and thoughts. These can block out the negative thoughts your inner critic says. For example: •

I am doing the very best I can at this moment

•

I am worthwhile just because I am a human being

•

everything will be ok

•

I have an amazing family and with their help I can get through this



19


5/3/13

12:42

Page 20

The affirmations need to mean something to you so the above are only suggestions. To find positive thoughts that will help you, ask yourself ‘What would I like to hear from someone else to help me feel better?’ When you have your list, put it somewhere you can see it – on the fridge, bathroom mirror or in your handbag or wallet. 4 Write a talents and skills list. Think about past talents you might like to reconnect with. Write down those things you know you are good at or hobbies and activities you enjoy. Many people with MS realise they have a new appreciation for certain areas of life and find that writing a list helps them discover, or rediscover, these. An occupational therapist might be best placed to advise and help you adapt things to suit – with handrails in a garden, for example. Or you might ask others to help you. For example, ask someone to lay decking, or raise flower beds and so on.


5 On days when your self-esteem is low. Try to be around positive people, or read positive books and allow them to encourage and support you.

20

5/3/13

12:42

Cognitive changes and emotions

Page 21

MS can cause cognitive changes (changes in memory and thinking), though most people with MS will only experience mild to moderate problems and find it helpful to use compensatory strategies. There is more on cognitive changes in the MS Society booklet Memory and thinking. Cognitive changes are not the same as emotional reactions to living with MS, but there can be connections between the two.

What kind of symptoms can MS cause? Often people with MS will realise they are having cognitive problems when they find it hard to read a book or follow conversations. This can have a huge impact on their ability to work, socialise and enjoy leisure time. Memory loss is the most commonly reported cognitive difficulty. The term cognition is used to describe a person’s ‘thinking ability’ and involves: •

focusing, maintaining and shifting one’s attention

•

learning, remembering and recalling information

•

understanding and using language appropriately and effectively

•

performing maths calculations

• ‘executive

function’ such as planning actions, performing tasks in the correct order, controlling one’s impulses, transferring learning from one situation to another, and working with abstract concepts Experiencing changes in your ability to think, remember things and organise yourself can prove to be very distressing. Unfortunately, society at large often stigmatises people who have problems in these areas, sometimes wrongly seeing them as stupid or lazy. This is far from the truth. It has been estimated that between 45 per cent and 65 per cent of people with MS will experience some type of cognitive impairment. As for physical symptoms of MS, no two people share exactly the same profile of difficulty and the severity of changes can vary. There appears to be little association between the level of someone’s physical disability and their cognitive functioning. Sometimes the cognitive changes worsen temporarily with a relapse or with significant fatigue and improve after rest or when in remission. Cognitive changes can occur early on or after many years, but people with MS rarely experience the severity of cognitive dysfunction that people experience with better known conditions such as Alzheimer’s disease. In addition, cognitive changes in MS can stabilise at any time and may not continue to progress as with Alzheimer’s. Most people with MS who experience cognitive changes have mild symptoms.



21


5/3/13

12:42

Page 22

As with other MS symptoms, cognitive symptoms can fluctuate. Certain situations might make the cognitive symptoms worse. To help you identify possible situations that make your memory or thinking worse, ask yourself: ‘Do I experience difficulties when…’ •

I’m stressed?

•

I haven’t had enough rest?

•

I have been working long hours?

•

I’m feeling upset or agitated or rushed?

•

it’s the beginning of the day?

•

it’s the end of the day?

•

I have to shift my attention and concentration from one thing to another?

•

I’m at work?

•

I’m at home?

•

I’m shopping in the busy supermarket?

•

it’s very noisy? ...and so on. Understanding what might be making things worse can help you to manage the difficulties better. Remember that cognitive changes do not mean you are:

•

lazy or stupid

•

uninterested or cannot understand when you find that following a conversation is difficult

•

indecisive

•

incapable of working

•

incapable of being a parent, partner, friend


• ‘going

22

mad’

5/3/13

The impact of MS on others

12:42

Page 23

MS affects the family, friends and colleagues – in fact, anyone who is in contact with the person who has been diagnosed with MS. Those who are close to the person with MS frequently find they identify with the same emotions being experienced: grief, anxiety, anger, guilt, fear, isolation, and relief. All the previously suggested strategies to deal with emotions are not only for a person with MS but can be effectively used by all those involved. If you are a family member or friend affected by MS, it is as important for you to look after yourself and recognise you can take control as well. This section looks at some of the different reactions the family can have, how to adjust to change, and tips for good communication. Where you see this symbol, there are tips for better communication.

Different reactions in the family One of the difficult things to deal with in families is that, often, people do not experience the same emotion at the same time. While the person diagnosed with MS might have moved through the grief process, their family members might still be grieving. It is not uncommon for one person to feel significant relief at the diagnosis and another to be very fearful. It is important to acknowledge that all emotions, both positive and negative, are important and are normal emotions in the given circumstances. Often many of the symptoms of MS are ‘invisible’, for example, fatigue and cognitive changes. If a person has their leg in plaster it is obvious to everyone that the leg isn’t working properly, but symptoms like fatigue or cognitive changes can be subtle, and difficult to acknowledge and understand – which can make good communication particularly important.

Adjustment to change There are many adjustments that frequently have to be made, not only by the person diagnosed with MS but also by the whole family, as the uninvited guest moves in. These adjustments can lead to a number of different emotions, all of which are normal. It is important that each person gives themselves permission to experience these emotions and to acknowledge them – and to communicate or express them with their loved ones and those around who can help (such as a GP, or other health or social care professional). Recognising the emotions you experience and dealing with them in a healthy way will help with the adjustment process. Asking for help is not a failure but a positive step forward in coping with MS. The adjustments or changes MS might lead to, for partners, children, parents and friends of a person with MS, can include:



23


5/3/13

12:42

Page 24

Change from partner or lover to carer All relationships have hopes and plans for the future, a shared history and a shared commitment to making the relationship work. MS can cause shifts in these. A partner might, for example, have to provide intimate care, such as helping with bathing, dressing or toileting. The role appears to change. But this can be a change in role others place upon them. For example, health professionals might call the partner a ‘full-time carer’ and a lot of information uses the term ‘carer’ rather than parent, spouse, friend or colleague. While this is a useful name for people wanting to access help and support in their caring role, it is rarely how the person wishes to be seen in day-to-day life. The caring role is only part of any relationship. All this can lead to frustration and confusion over their role. Changes in role Sometimes partners or parents have to find different employment to fit around school hours (for example, if the person with MS is not able to collect the children). For others, it’s a case of working longer hours to help to keep finances in check. If the person with MS is experiencing a relapse or struggles with fatigue, the partner, parent or child might find they are doing housework or other tasks the person with MS previously completed. At times, this might lead to feelings of inequality or unfairness, anger, frustration and isolation.


Impact on children

24

Children who have a parent with MS can become confused and scared. Often this is due to lack of communication from the parents as they are worried about how to explain MS to the child. There is no right or wrong way to speak to your children about MS. How you tell them or how much you tell them is an individual decision – no two families are the same. You know your children best. However, it is important to recognise that children notice what goes on around them – they pick up on changes in atmosphere, emotions and what is not being said. This can lead to MS becoming a ‘monster in the wardrobe’ – the child knows it exists but the parents tell them it is their imagination. Children imagine the worst if things are not out in the open. Giving your child information about MS allows for questions to be asked and reassurances to be given. There are books and DVDs to help you speak to your child about MS, available from the MS Society, the US and Canadian MS Societies and the MS Trust (see Further information).

5/3/13

12:42

Page 25

Impact on adults with MS and their parents Most parents have expectations, hopes and dreams for their children. They spend their lives preparing their children to become responsible, independent, self-supporting individuals, to leave home and to develop their own homes. Unfortunately MS can sometimes interfere with these aspirations. As MS is frequently diagnosed in young adulthood, adult children might find it more difficult to leave their parents’ home or have to return to the parental home. Adults with MS might need their parents’ support financially, or extra help with bringing up children. These situations can cause stress, anxiety and frustrations as the parent-child boundaries become blurred. Parents, regardless of how old the child is when MS is diagnosed, experience the whole host of emotions mentioned previously. Frequently, the parents of the person diagnosed (regardless of age), and in particular the mother, believe it is their fault: ‘Is it something I did wrong that caused MS?’ This fear can lead to guilt-ridden behaviours. Unfortunately, emotions being experienced are not often recognised because parents of adult children are not often afforded the opportunity to express their concerns and ask questions of health care professionals, especially when the person with MS has a spouse. Frequently, parental protectiveness is reactivated and the person with MS can sometimes start to feel smothered. But, for many adult children with MS, having caring parents can be a positive experience, providing reassurance and emotional support. Impact on friends and colleagues MS can affect all relationships and all too often the impact on work colleagues and friends can be forgotten. There are many resources available for helping families deal with MS, but there’s very little recognition of the experience of friends and colleagues. They too might find themselves facing strong emotions when they hear of the diagnosis of MS being given to someone close to them, or in watching them go through relapses or changing symptoms. It is important for friends and colleagues to understand it is normal to experience their own emotions and to give themselves permission to express their feelings. Communication is the key to maintaining healthy friendships. The person with MS is still the same friend or colleague – MS might be a part of them but it is not all of them. They have been diagnosed with MS – they are not a diagnosis of MS! It can be difficult for the person with MS in knowing what to say to friends and colleagues – many people don’t understand MS and so they find themselves having to ‘educate’. They might find it hard to deal with constant questions of concern, such as ‘How are you feeling today?’, especially in their employment where this concern can be perceived as ‘You aren’t capable of doing your job’. This can lead to frustration on the part of the person with MS and to confusion for the colleague or friend expressing the concern.



25


5/3/13

12:42

Page 26

Communication difficulties Communication is a two-way street and a complex process. It is a skill we develop through life. It is also important to remember that communication is not only verbal in nature. In fact, researchers suggest that up to 55 per cent of communication is through nonverbal means – the way we present ourselves and body language. Communication is about effective listening and being effectively listened to. It is recognised that poor communication in relationships causes significant challenges. In fact, researchers recognise that having good channels of communication in relationships is probably the single most important factor in maintaining healthy relationships. Learning and practising good communication skills can help minimise and deal with current and future conflicts. A family member, friend or work colleague being diagnosed with MS can cause life to feel more unpredictable than it usually does. Combined with emotional responses, such as stress or fear, this can affect communication. There are a number of reasons for communication to become difficult. Understanding these will help you cope with communication problems and help each family member to express their own feelings. Coping styles. Everyone has their own unique ways of coping. For example, one might want to talk, another to think long and hard. One might want to ‘refuse’ the diagnosis, the other to explore everything written about MS. This can cause conflicts, not only at the point of diagnosis but at different times in the future, especially if the MS changes.


Myths and misconceptions. When someone is diagnosed with MS it is amazing that everyone they speak to will know someone who has MS as well. This means there will be as many ideas about MS and what it is as there are people you might speak to. This can lead to myths as to what MS is and misconceptions as to how MS affects people. This can lead to confusion.

26

Protection. In families, it is not uncommon for each member to want to protect other family members. This can lead to MS becoming the unmentioned guest that sits with you at each meal, watching the TV, and so on. Uncomfortable subjects. There are many subjects families in general just don’t talk about – for example, sex, bladder issues and bowel habits. They are just embarrassing subjects for a lot of us! If these are common experiences in all families, adding MS into the mix can cause even more embarrassment and make communication even more difficult. Cognitive changes (affecting memory or thinking) can also be difficult topics to raise. Money, money, money. MS can be a costly condition so conflicts can arise over family finances. This isn’t uncommon in families

5/3/13

12:42

Page 27

in general, where it is acknowledged that more couples argue about finances than anything else! Communication is an important tool in all relationships and all of the above can be normal experiences in families and relationships, regardless of MS. MS might make communication more difficult, but it can also nudge families towards being better communicators. A starting point to aid good communication is to recognise that everyone has different ways of communicating how they feel. Some are strong, silent types; others are talkative, fired-up types. The goal is to find common ground for communication and then use this to begin to work through coping with the intrusion of MS in family life and relationships.

Tips for better communication •

Be honest about your feelings and, if it is hard for you to express something, be honest at the outset. Maybe say something like, ‘This is a difficult subject for me to talk about’.

•

Accept support and help when offered.

•

Ask ‘How can I help?’

•

Endeavour to be a better listener than talker.

•

Find appropriate times when an important thing needs to be communicated. If you are very fatigued or emotional it is probably not the best time to discuss important issues.

•

Turn the TV, computer or radio off – give the person trying to communicate all your attention.

•

Remember, it is all right to have different opinions. You might not always agree. The most important thing is to feel as though you have been listened to and your opinion matters.

•

Be willing to change and to try new ways to communicate – for example, with family communication books, using white boards, Post-it notes, or even by passing a teddy from one person to another (the person with the teddy does the talking, the other listens, and when the teddy is passed on the other person can communicate).

•

Recognise that men and women communicate in different ways. John Gray in writing his bestseller Men are from Mars, Women are from Venus, encouraged society to recognise these differences. More recently, a newspaper carried an article entitled Men are from Earth, Women are from Earth – get over it! Either way, the message is that if you understand gender differences, misunderstandings can be dealt with. There are many other excellent strategies to aid communication – be brave and experiment. If you really struggle with this, speak to your GP about being referred for family or relationship therapy.



27


5/3/13

Getting the right support

12:42

Page 28

Dealing with MS in a void is not easy. Human beings need connections, they need healthy relationships and social support structures. We were not designed to be alone – no man is an island. Maintaining relationships and developing new ones after being diagnosed with a long-term condition such as MS can be a challenge. On one hand, you might want to be alone, but on the other you might want people around you. You might want to be fiercely independent but also recognise the need for interdependence. As mentioned earlier, MS can produce tension in relationships. But it is not all doom and gloom. Learning ways to deal with the challenges MS throws into your path will help your self-confidence and help you interact better with others around you. Using the strategies in this booklet will start you on this path. However, the most important strategy is to use support structures. These not only include your family, friends and colleagues but also making connections with local MS support groups, which can prove to be an invaluable resource. Many people find support groups such as MS Society branches helpful for information and support from others affected by MS in the area. Branches and other groups might also arrange for experts to visit the group and provide information or even services (such as physiotherapy). Not everyone wants to get heavily involved in an ‘MS group’, of course, but there might be aspects of a group that you find helpful, so it can really be worth staying in touch with them.


You might prefer to explore internet support groups, discussion boards or chat rooms. There are also excellent resources available on the internet – see the sites listed on page 31. A word of caution: there are many internet sites and online adverts offering all kinds of treatments, such as very restrictive diets or un-proven therapies. Remember, if there is a ‘miracle cure’ promoted and you want to find out more about it, the MS Society has a freephone MS Helpline you can call or email for information – or speak to your doctor, MS nurse or other health care professional.

28

Learning about your condition and how to manage it can also be a form a support: ‘self-support’, you might call it. You might do this through reading, going to MS Society information days, watching awareness talks on the MS Society website, or attending an Expert Patient Programme or self-management course (see Further information). There are many effective ways of dealing with MS. MS might not yet have a cure, but living with MS can be a positive experience. Rollo May in his book, Man’s Search for Himself, said: ‘The most effective way to ensure the value of the future is to confront the present courageously and constructively. For the future is born out of, and made by, the present’.

Further information

5/3/13

12:42

Page 29

Read more Our free booklets help explain MS, look at its practical and emotional effects, and help you find your own ways to manage life with MS. Titles are available in large print, audio format and a number of languages. We can help you find and borrow other books, research articles and DVDs about living with MS. Search online or call the UK Information Team. Find out more online Get the latest on research, campaigns and MS news. Chat online with our message boards and Facebook. Follow us on Twitter, see the MS community at Flickr and watch us on YouTube. Children and teenagers can find out more and link up through our YoungMS site: www.youngms.org.uk Join us Receive local and national news, and get involved locally and nationally. Be as involved as you like. Just by being a member you strengthen the voice of all people with MS, and help us continue our vital work. Join online, or call 020 8438 0759 or your national office. Get in touch The freephone MS Helpline offers confidential emotional support and information for anyone affected by MS, including family, friends and carers. Information is available in over 150 languages through an interpreter service: 0808 800 8000 (weekdays 9am9pm) or [email protected]. Contact the UK Information Team or your national office if you have any questions about MS. Near you Our volunteers run over 300 local branches and support groups. They provide information about MS and local services, and a chance to meet others affected by MS and take part in a range of activities. In many parts of the country, you can pick up our booklets at MS Society Info Points. Larger information centres – including ones in our national offices in London, Belfast, Cardiff and Edinburgh (Newbridge) – can help you with information about MS and services in your area. Or come along to our local and national events and learn more about MS from expert care professionals, researchers and other people with the condition. Find out more online or call your national office.



29


5/3/13

12:42

Page 30

Further reading Many of these books are available to borrow from the MS Society library. Email [email protected] call 020 8438 0900 or visit www.mssociety.org.uk/library •

Overcoming anger and irritability by William Davies. Published by Robinson (2009), ISBN: 1849011311. Using cognitive behavioural therapy techniques, this self-help manual has been written to explain why bouts of anger and irritability can occur and suggests ways to overcome them.

•

Overcoming anxiety by Helen Kennerley. Published by Robinson (2009), ISBN: 1849010714. This book also uses cognitive behavioural therapy techniques to present a self-help programme for managing anxiety.

•

On grief and grieving. Finding the meaning of grief through the five stages of grief by Elisabeth Kubler-Ross and David Kessler. Published by Simon and Schuster (2005), ISBN: 0743263448. This book looks further at some of the concepts around healthy grieving introduced in this booklet.

•

Overcoming depression by Paul Gilbert. Published by Robinson (2009), ISBN: 1849010668. Another self-help book using a cognitive behavioural approach. This one suggests ways to help manage depression and low mood.

•

Overcoming low self-esteem by Melanie Fennell. Published by Robinson (2009), ISBN: 1849010684. A self-help book, again using a cognitive behavioural approach, which looks at ways to raise self-esteem.

•

Self-esteem for women. A practical guide to love, intimacy and success by Lynda Field. Published by Vermilion (2001), ISBN: 009187632X. This guide uses a mixture of self-help techniques aimed at raising self-esteem and taking control.


• ‘Teach

30

Yourself’ Managing stress by Terry Looker and Olga Gregson. Published by Teach Yourself (2003), ISBN: 0340860073. This self-help guide aims to help you assess and identify your own stress, then find ways to manage it.

•

Facing the cognitive challenges of MS (Second edition) by Jeffrey Gingold. Published by Demos Medical Publishing (2011), ISBN: 1936303205. An accessible look at the complex and often subtle ways in which MS can affect some people’s memory and thinking.

•

Mental sharpening stones. Manage the cognitive challenges of multiple sclerosis by Jeffrey N. Gingold. Published by Demos Medical Publishing (2009), ISBN: 1932603654. This book includes practical strategies for managing changes in memory or thinking that some people with MS experience.

5/3/13

12:42

Page 31

•

It’s not all in your head: Anxiety, depression, mood swings and multiple sclerosis by Patricia Farrell, PhD. Published by Demos Medical Publishing (2011), ISBN: 1932603958. This book uses a cognitive behavioural approach to overcoming the depression, anxiety and stress that goes hand-in-hand with MS.

•

Living with progressive multiple sclerosis. Overcoming the challenges by Patricia K. Coyle and June Halper. Published by Demos Medical Publishing (Second edition 2008), ISBN: 1932603476. This American book includes chapters on managing the social, economic and medical aspects of progressive MS.

•

Multiple Sclerosis: A self-care guide to wellness edited by Nancy J. Holland and June Halper. Published by Demos Medical Publishing (Second edition 2005), ISBN: 1932603077. This American book focuses on managing MS and living well. It contains many practical tips for keeping as healthy, fit and active as possible.

•

300 tips for making life easier with multiple sclerosis by Shelley Peterman Schwarz. Published by Demos Medical Publishing (2006), ISBN: 1932603212. This book has tips on many aspects of living with MS – for people with MS, their families, friends and carers.

Online resources MS Society www.mssociety.org.uk All our information booklets are available to download online. We also have discussion forums and links to social media. National Multiple Sclerosis Society (USA) www.nationalmssociety.org This American site is particularly strong on information for children and teenagers, whether they have MS themselves or live with someone who has the condition. Multiple Sclerosis Society of Canada www.mssociety.ca This Canadian site is also strong on information for children and teenagers. MS Trust www.mstrust.org.uk Provides information about MS. Living Life to The Full www.llttf.com Online self-help courses using Cognitive Behavioural Therapy (CBT) in everyday life.



31


5/3/13

12:42

Page 32

Useful organisations British Association for Behavioural and Cognitive Psychotherapies (BABCP) Supplies details of accredited cognitive and behavioural psychotherapists – full directory available online. Imperial House Hornby Street Bury BL9 5BN Telephone 0161 705 4304 www.babcp.com British Association for Counselling Supplies details of accredited counsellors, psychologists and therapists. BACP House 15 St John’s Business Park Lutterworth Leicestershire LE17 4HB Telephone 01455 883316 www.bacp.co.uk Carers Trust (or Princess Royal Trust for Carers in Scotland) Formed through a merger between the Princess Royal Trust for Carers and Crossroads Care, the Carers Trust provides information, advice and support through its network of independently managed carers’ centres. Also has information and a forum for carers on their website. 32-36 Loman Street London SE1 0EH Telephone 0844 800 4361 www.carers.org


MS National Therapy Centres

32

A federation of therapy centres around the UK. They offer a variety of therapies, often including physiotherapy. PO Box 126 Whitchurch SY14 7WL Telephone 0845 367 0977 www.msntc.org

5/3/13

12:42

Page 33

Relate/ Relate NI Offers advice, relationship counselling, family counselling, workshops, mediation, consultations and support, face to face, by phone and through the website. In England and Wales: Telephone 0300 100 1234 www.relate.org.uk In Northern Ireland: Telephone 028 9032 3454 www.relateni.org Relationships Scotland Offers a similar service to Relate for people in Scotland. Telephone 0845 119 2020 www.relationships-scotland.org.uk Self-management courses Self-management courses are designed for anyone with a longterm condition, like MS. They give people the tools and techniques to help them to manage their condition better. For information about self-management courses in your area, contact: In England: Expert Patients Programme Telephone 0800 988 5550 www.expertpatients.co.uk In Wales: EPP Cymru www.wales.nhs.uk/expertpatient In Scotland: Self-management courses in Scotland are run by the MS Society. Telephone 0131 335 4050 In Northern Ireland: The charity Arthritis Care runs free Challenging your Condition courses for people with any long term condition. Telephone 028 9078 2940 www.arthritiscare.org.uk/inyourarea/NorthernIreland



33


5/3/13

12:42

Page 34

Sexual Advice Association Information on male and female sexual problems and how to seek help. Suite 301 Emblem House London Bridge Hospital 27 Tooley Street London SE1 2PR Helpline 020 7486 7262 (Monday, Wednesday and Friday, 9am – 5pm)


www.sda.uk.net

34

5/3/13

12:42

Page 35

Authors and contributors Written by Anita Rose Edited by James Bailey With thanks to all those working with and affected by MS who helped with the production of this booklet. Design Crescent Lodge Disclaimer: We have made every effort to ensure that the information in this publication is correct. We do not accept liability for any errors or omissions. The law and government regulations may change. Be sure to seek local advice from the sources listed. Suggestions for improvement for future editions are welcomed. Please send them to [email protected] © Multiple Sclerosis Society 2013 First edition, March 2009 Revised and reprinted, March 2013 This title will be reviewed within three years.

The MS Society provides this information free of charge but if you would like to help cover the cost, which will help towards our essential work, please call 0800 100 133 or visit the fundraising section of our website to make a donation. Anything you can give will be greatly appreciated.



35


5/3/13

12:42

Page 36

MS Society Multiple sclerosis (MS) is the most common disabling neurological disorder affecting young adults and we estimate that around 100,000 people in the UK have MS. MS is the result of damage to myelin – the protective sheath surrounding nerve fibres of the central nervous system. This damage interferes with messages between the brain and other parts of the body. For some people, MS is characterised by periods of relapse and remission while, for others, it has a progressive pattern. For everyone, it makes life unpredictable. The MS Society is the UK’s largest charity dedicated to supporting everyone whose life is touched by MS. We provide a freephone MS Helpline, grants for home adaptations, respite care and mobility aids, education and training, support for specialist MS nurses and a wide range of information. Local branches cater for people of all ages and interests and are run by people with direct experience of MS. The MS Society also funds around 80 vital MS research projects in the UK. Membership is open to people with MS, their families, carers, friends and supporters. You can help the work of the MS Society by: • • •

becoming a member making a donation offering your time as a volunteer

Contact information MS National Centre 372 Edgware Road London NW2 6ND Telephone 020 8438 0700 [email protected] MS Society Scotland National Office, Ratho Park 88 Glasgow Road Ratho Station Newbridge EH28 8PP Telephone 0131 335 4050 [email protected] MS Society Northern Ireland The Resource Centre 34 Annadale Avenue Belfast BT7 3JJ Telephone 028 9080 2802 [email protected]

MS Society Cymru Temple Court Cathedral Road Cardiff CF11 9HA Telephone 029 2078 6676 [email protected] National MS Helpline Freephone 0808 800 8000 (weekdays 9am-9pm) www.mssociety.org.uk Multiple Sclerosis Society. Registered charity nos 1139257 / SC041990. Registered as a limited company in England and Wales 07451571. ES28/0313