MS and Me: A Self-Management Guide To Living With MS

MS and me
a self-management
guide to living with MS
We hope you find the information in this book helpful. If you
would like to speak with someone about any aspect of MS,
contact the MS Trust information team and they will help find
answers to your questions.
This book has been provided free by the Multiple Sclerosis Trust,
a UK charity which works to improve the lives of people affected
by MS. We rely on donations, fundraising and gifts in wills to be
able to fund our services and are extremely grateful for every
donation received, no matter what size.
MS Trust information service

Helping you find the information you need
The MS Trust offers a wide range of publications, including a

newsletter Open Door, which provides an ongoing update on
research and developments in MS management. In addition it
contains articles from people with MS and health professionals.
For a full list of MS Trust publications, to sign up for Open Door
and much more visit our website at www.mstrust.org.uk
Phone: 0800 032 3839 or 01462 476700
(Lines are open Monday-Friday 9am-5pm)
Email: [email protected]
Write: MS Trust
Spirella Building
Letchworth Garden City
Hertfordshire
SG6 4ET
2 www.mstrust.org.uk
Contents
Introduction 4
1. What is self-management? 5
• Adjusting to a diagnosis of MS
• How you think and feel about yourself
• Taking a positive approach
2. Self-management techniques 11
• Knowledge is power – monitoring your MS
• Goal setting
• Problem solving
3. Self-management in action 19
• Recognising a relapse
• Dealing with symptoms
• Making treatment choices
• Utilising resources – the value of information
• Working in partnership with health professionals
4. Living well 28
• Activity and exercise
• Food and drink
• Health awareness
5. Barriers to self-management 32
• Stress
• Depression
• Anxiety
• Overcoming the barriers
6. Helpful hints 37
7. More information 38
• Self-management courses
• Information from the MS Trust

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Introduction
When you are diagnosed with multiple sclerosis you are
embarking on a lifelong journey. We hope this book will help
you to understand more about your own MS and find the
most effective ways to manage this wherever you are on that
path. Living effectively with MS means using all the resources
available to you, some of those will be within you, like setting
yourself goals, and some of them will be external such as finding
the information you need. The term often used for this is self-
management.
To support you in managing your MS successfully we have

included some practical strategies that we hope will be useful.
Not everything will be helpful all of the time, there may be some
things that are relevant to you now and some that might become
useful later. But the aim of this book is to give you some ideas
about how you can start managing your MS and living your life
to the full.
1. What is self-management?
Self-management is something you probably do all the time but

don’t realise it.
Every day you use problem solving skills - getting to that meeting
when the car has broken down or sorting out after school
activities for the children. You set goals and manage your stress
and your time – this is self-management.
MS is unpredictable but you can learn to understand what affects

your condition, how to make the most effective use of medication
and build good relationships with the health professionals that
work with you.
Self-management can enable you to control the things you can

control and better deal with the things you can’t. You are then
best placed to face the challenges that living with this condition
might bring.
Of the estimated 100,000 people living with MS in the UK the

average time spent with a health professional is thought to be
around three hours a year. Most people, most of the time, are
self-managing their condition whether they know it or not. This
doesn’t have to mean “going it alone”. Support from an MS
specialist nurse, GP and other health professionals that you are
in contact with along with friends and family, will help you make
decisions about treatment and lifestyle choices that are right for
you. Everyone’s experience of MS is different and everyone’s
journey in self-management will also be unique.
“Self-management is about knowing how to recognise the

difficulties MS can bring and adjusting your way of life to
accommodate them…finding new ways to live life to the full.”
Nikki
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In MS self-management includes:
• dealing with symptoms and relapses
• making informed choices about medication
• making best use of available resources
•
being a partner with health professionals in making decisions
about treatment
• living well and accommodating MS into your life.
People who are most likely to successfully self-manage

their MS:
• have a good understanding of MS
•
manage the impact of MS on physical, emotional, social and
working life and are able to make adjustments when necessary
• actively participate in making decisions with health professionals
• adopt healthy lifestyles
• take action.
Adjusting to a diagnosis of MS
The impact of a diagnosis of MS on people varies. Some people

experience shock and disbelief whereas other people are relieved
to have a diagnosis and feel pleased that at last somebody has
recognised something is wrong.
The psychological adjustment to a diagnosis of MS might include

an increase in feelings of anxiety, fear, anger or frustration, or
disturbance of your moods.
As MS can cause physical and psychological changes that can

affect many aspects of your life including work, social and family
life, the reactions associated with a diagnosis of MS can be similar
to those of loss and grief.
“In my experience some people seem to consider that
their life, before diagnosis with MS, was a time when they
regarded themselves as “normal”, their true self. A coping
strategy which I have adopted is to create a new normal.
I have a new self which is not worse, just different. This
attitude has enabled me to move forward with my life and
stop getting bogged down with negative thoughts of what I
used to achieve.”
Rohan
It takes time to come to terms with a diagnosis of MS; this is a

long-term condition and requires long-term adjustment. This can
take great personal effort and require the support of friends,
family and health professionals.
When you are first diagnosed with MS you might feel that
information about self-management is not for you, it can be years
later when this might seem relevant.
“I accepted the diagnosis; in fact it was a relief to know

what it was. It was over a year later that realisation hit me,
this was for life.”
Jim
Other MS Trust resources

Making Sense of MS – this resource is for people who have
been recently diagnosed with MS.
www.mstrust.org.uk/msoms
Successfully adjusting to life with MS has been linked to learning

strategies such as: being able to juggle good and bad days;
pacing activities; delegating and prioritising tasks; and managing
stress. In meeting the challenges of living with MS, people often
find strength and courage that they did not know they had.
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How you think and feel about yourself
It helps to understand how you react to the ups and downs of

life. Do you believe that what you do makes a difference and that
your involvement is essential to maintaining your health? Do you
have confidence in your ability to acquire the skills you need to
meet challenging situations and persevere in difficult situations?
Linked to this is self-esteem; the respect, regard, value and

opinion you have about yourself. This can be affected by MS in
many ways; there may be times when you feel less confident.
For example, the things you used to be able to do easily might
be more difficult now. It can also affect your self-image and at
times you might feel less of a person, less of a partner and less
useful to your family and friends. The way that people treat you
may change.
“After I told my neighbour that I had MS she would cross

the street so that she didn’t have to talk to me.”
Elizabeth
However, successfully meeting the challenges that living with

MS inevitably brings can have a positive impact on self-esteem
and build your confidence to go forward into new situations.
Finding different ways of doing something rather than giving up
altogether can also increase your feelings of being in control.
“Getting the diagnosis of MS was the kick start I needed

to review my life and my work – I wouldn’t have done that
if I hadn’t been jolted into action.”
Hellie
Many factors can affect how you apply self-management skills

and this is likely to be different at different times. Changes
in relationships, for example asking for help when you have
previously been self-sufficient, may impact on your confidence.
On the other hand, recognising that you need help and being
able to ask for this can be a positive step in self-management.
Ways to build and maintain self-esteem and a positive

outlook include:
• feeling involved
• being realistic and flexible
• recognising that you are loved and cared for by other people
•
using activity and exercise to improve your fitness, your sense
of wellbeing, and lift mood.
“Getting involved with a voluntary group helps me feel

useful and needed.”
Beth
Taking a positive approach
A person with a positive approach recognises the negatives

that crop up day to day but develops the skills and coping
mechanisms to handle them. Although some of the consequences
of MS cannot be controlled it is important to recognise what can
be managed and, as MS is a long-term condition, these have to
be managed on a daily basis.
Just looking at things from a different point of view can be helpful,

for example:
‘Today I’ve got to do x…’ sounds as though you’re acting for

someone else whereas saying ‘Today I’ve decided I want to do
x…’ puts you in charge. When problems arise, you could
describe them to yourself and to others as ‘opportunities’ or
‘challenges’ that you can learn from. This technique is known as
re-framing – changing your feelings about events by setting them
in a new perspective.
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I’m totally shattered, but I can’t relax because I still have to
do the dishes.
I’m tired now so my priority is to rest. The washing up can
wait until later.
My walking is slow.
I’m in no rush to get where I’m going. Getting there safely is
what matters.
Identify and challenge negative thoughts and behaviours.
2. Self-management techniques
Monitoring your MS, setting goals and solving problems can all
be valuable strategies in managing your MS.
Knowledge is power – monitoring your MS
The idea of self-management is based on understanding your

own MS, so keeping track of changes and what might bring
these about is a key tool. This can help you to identify trigger
factors and patterns, for example finding fatigue is more severe
on a hot day or that your fatigue might be worse at a particular
time of day or after a particular activity. Becoming aware of this
allows you to plan your work or activities effectively around this.
One way to achieve this better understanding is through

becoming aware of changes in your 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; diet or at different times.
This information will allow you to understand what affects your
MS and how. This knowledge will help you, your family and your
health professionals to manage your MS effectively.
Apps can also help you to monitor symptoms some of which

include an interactive symptom tracker and this information
can be illustrated using easy to read charts. Other features can
enable you to record medication and set reminders for taking
them, log contact details of your MS team and identify factors
which could make symptoms worse such as weather. This can
then be shared with your MS team. The SymTrac app is one
example and can be downloaded from www.symtrac.com and is
available for both iPhone and Android platforms.
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Useful information to keep in your personal diary
might include:
•
Information about relapses you have experienced for example
the date the relapse started; how you felt immediately before
the relapse; when things started to improve; the symptoms
you experienced; what helped; whether you were prescribed
steroids either orally or by infusion and any side-effects of
this treatment; if you were admitted to hospital; how long the
relapse lasted; if you had a full recovery or were left with some
residual problems.
• When a new symptom was experienced.
•
Symptom changes and any related factors for example if it
was a hot day.
•
Questions you would like to ask your health professional either
by telephone or at your next appointment.
•
Prescription medication you are taking, and any medication
you have previously tried. It is also useful to note what effects
the medication has had and any side-effects.
•
A copy of your MRI scan reports. You can ask your consultant
or MS nurse if you can have a copy of these.
•
A copy of the results of any other investigations undertaken
such as lumbar puncture or blood tests.
•
A copy of letters between your GP and other health
professionals including hospital consultants. This keeps you
informed, helps you to remember what was said and is a
reminder of when you are due to be reviewed.
This might be very informal as Hellie’s diary illustrates
Friday 7 May
Yesterday I was so tired and achy I didn’t know what
to do with myself. Dinner was easy, just to shove
something in the oven for 20 mins. I was so far
gone in fatigue-land it was like my sofa was keeping
me prisoner. When I get tired like this, I have huge
concentration difficulties and problems finding words -
Does anyone else? Ask on MS people discussion list.
Saturday 5 June
This week fuzziness in my leg has moved up to my arm.
Had some pains in my hand also one day, but it has
been mostly ok. It mostly feels like both arm and leg is
slightly “weaker” and fizzy compared to the left side.
Must remember to mention to Sally (MS nurse)
on Tuesday.
Saturday 4 September
I’ve not slept very well for a few weeks now and it is
getting worse and worse. At the moment my eyes are
aching as if I rubbed soap into them, and my eyelids are
heavy like they are made of lead. I guess some of this
lack of sleep comes from worrying about getting the
new kitchen put in but its making fatigue even worse!
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Or may be more structured:
MS relapse details
When was the relapse?

What were the symptoms?
How were they treated?
Resolved: Yes No
Medicine details
Drug name
Dosage
What was it prescribed for
Commencement Date completed
Monthly summary
Questions to ask MS nurse
Hospital appointments
Date Time
Place Appointment with
Action
Talking points
Goal setting
Setting goals gives you focus and a sense of achievement when

they are reached. It can be an important tool in self-management.
Your goal should be important to you, something which you can

achieve within a specified time limit and which will help you to
better manage your MS.
In each case:
• decide what you want to achieve
• look for different ways to achieve your goal
•
make an action plan which incorporates milestones to check
your progress along the way
• use the action plan
• review the results
• make changes
•
reward yourself - celebrate your successes and congratulate
yourself on your achievements.
“Fatigue was always a huge problem for me. I made

a positive decision to tackle this and the fatigue has
improved – the reward for having less fatigue is being
more active than ever before.”
Carole
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Make your goals SMART:
Specific I want to feel less fatigued at work.

Measurable Something that you can attain and will know when
you have achieved this; you can monitor the times
you feel fatigued by keeping a diary.
Achievable Is the goal within reach? Feeling less fatigued at
work is a good goal whereas eliminating fatigue
altogether is unlikely to be achievable.
Realistic Can I actually do this?
Yes by using a number of strategies.
• Consider a regular exercise programme that
increases your heart rate for 15-20 minutes
three times a week or more.
• Look at your diet. Do you snack on crisps,
chocolates and biscuits? If so change these to
fresh or dried fruits and ration treats to one or
two a day.
• Do you use sugar or caffeine to boost your
energy levels? If so consider alternatives.
• Use lunch time to rest instead of shopping,
shop online.
• Consult the MS Trust book Living with fatigue:
a guide to fatigue management for people
living with MS for more hints and tips.
Timed et a manageable time limit so that you won’t lose
S
interest but you do have enough time to achieve
your goal. Three months might be reasonable in
this example. Break the task down so that you
have smaller goals or milestones along the way and
review your progress as you go.
• One month review - Are you on target to reach
your goal? If not, make those changes to your
strategies. Decide on a treat so that when you
reach your target you have a reward to look
forward to.
Living with fatigue: a guide to fatigue management for
people living with MS.
www.mstrust.org.uk/fatigue
“I find I can achieve more when tasks are divided into

‘chunks’ and I rest in between than when I work straight
through until my fatigue becomes overpowering. Nine
times out of ten when I work straight through, I do not
complete my allotted task.”
Alice
Problem solving
There are many approaches to problem solving which can help

you to conduct a rigorous analysis of the problems you face. By
helping you to look at them in a structured and methodical way
these skills can give you a good starting point in problem solving
where you might otherwise feel overwhelmed by a situation.
“Each problem that I solved became a rule which served

afterwards to solve other problems.”
René Descartes (17th Century philosopher)
Identify the problem I’m exhausted by the time I reach work

Why? I drive in the rush hour
Why? Work begins at 9am
List ideas to solve the problem

Here it can be helpful to look for the best of what has happened
in the past, and what is currently working well. Involve as many
people as possible, for example family, friends, a discussion
group or colleagues, to examine different approaches.
If you are exhausted after driving to work you might consider;

taking public transport - getting a taxi - sharing a lift - travelling at
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a different time – starting work later or earlier - working from
home. Contact Jobcentre Plus to find out about Access to
Work, the Government scheme that can pay towards the cost of
getting to work if you cannot use public transport.
Select a method to try

Selecting the method and putting this in to practice can take
some time so allow a reasonable timescale.
For example:
Take a taxi - find out about the availability of the taxicard scheme
(this is a subsidised transport scheme run by some local
councils) - allow one week.
Arrange for the taxi service to and from work - allow one week.
Use service for four weeks. Consider the results - what did I
achieve - what went well - has my problem been solved?
Try another idea if you need to - examine what was good and
what was not so good.
Keep going! It may take you some time to find the solution that
works best for you.
3. Self-management in action
This section considers how the strategies and techniques

examined earlier can be used to help you to effectively manage
your MS.
Recognising a relapse
Experiencing a relapse can bring home the diagnosis of MS again.

This may mean a time of readjustment as the new symptoms
impact on family life and work for an unknown period of time, and
with an unknown outcome. As part of this adjustment process the
grief, anxiety, anger and guilt you might have felt at diagnosis may
well up again and make you doubt your ability to deal with your
MS and feel out of control.
In the early stages of MS it can be difficult to recognise what

might be a relapse and what is a fluctuation of your symptoms.
However with experience, as you get to know your own MS,
and using monitoring tools such as a diary or app, this will
become easier to recognise.
You may be having a relapse if:

You develop new symptoms or your symptoms get worse and
last for more than a day. Your healthcare professional should
check that nothing else could be causing these symptoms,
such as an infection, and confirm your diagnosis with a health
professional with expertise in MS.
NICE MS Clinical Guideline 186 (2014), Information for the public.
A relapse can be considerably longer than 24 hours and may go

on for weeks or months. The frequency of relapses, the severity
of symptoms and the length of time between attacks are all
unpredictable. Symptoms may vary greatly. They may be symptoms
that you have had before or new symptoms. You will learn through
time and with experience more about your own relapses.
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What to do if you think you are experiencing a relapse:
Contact your MS specialist nurse service or another health
professional.
You may then:

• receive oral steroid treatment from your GP
• be referred to the relapse clinic in the hospital
•
agree to monitor yourself to find out if symptoms improve
naturally
• receive treatment for any underlying infection.
“You know your own MS so don’t be put off if you feel you
need to speak with the nurse or doctor. Don’t accept “no”
just to please other people.”
Jill
Dealing with symptoms
After diagnosis you might attribute everything to MS or conversely,

believe that nothing is MS because you don’t want it to be – you
will learn about your own MS over time.
Understanding what might act as a trigger to cause worsening

of your symptoms is a large part of understanding your own MS
and being better able to manage it. Your own understanding will
improve with time and experience.
Gill had a sudden increase in her leg spasms. When she and
her MS nurse together considered what was happening they
discovered a blister that had been caused by wearing new training
shoes. This was triggering the spasms and when the blister
healed, spasms reduced.
Other factors can also have an impact on symptoms. For some

people heat can make symptoms worse.
“In the summer, the heat makes me much more sluggish
and I have to try to keep as cool as possible, I have air con
in the car and a humidifier at home. As long as I stay cool I
don’t slow down too much.’’
Vicky

Spasticity trigger diary.
www.mstrust.org.uk/spasticity-triggers
Urinary tract infections (UTIs) can be common in MS, and may

make MS symptoms worse or trigger a relapse. Talking to your
GP or other health professional about checking for a UTI if you
are generally feeling unwell can be helpful.
You might find symptoms increase if you have another virus or

infection. Avoiding contact with viruses and infections where
possible, especially following steroid therapy for a relapse is
important.
Ensuring that you have the vaccinations required if you are

travelling abroad and for seasonal flu in the UK will prevent you
contracting avoidable and potentially serious diseases.
Keeping a record of when your symptoms change for example

using a diary as explored in the earlier section Knowledge is
power – monitoring your MS will allow you to recognise what
might be a relapse and how your symptoms fluctuate.
Making treatment choices
Ideally a decision about what treatment is right for you will be

reached through considering the benefits you might expect from
the treatment and any potential associated risks. This includes
the effect a treatment may have on your lifestyle such as when
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and how medication or a course of treatment is taken. Your
commitment to stick to the course is also an important factor.
Treatment could be medication such as a disease modifying

therapy, a course of physiotherapy or treatment for a specific
symptom.
Questions to consider when discussing treatment options:

• Why will this treatment be good for me?
• What are the different types of treatment options?
• How long can I take to decide what treatment I have?
•
What does the treatment aim to do? When and how will I
know if the treatment is being effective?
• What if the treatment doesn’t work?
• Are there any side effects or risks?
• Who will manage my treatment?
• Is there any written material about the treatment options?
• Is there anything else I can do to help myself?
• What are the implications of delaying treatment?
Making a decision is ideally done in partnership with your health

professional. If the goals of the treatment are relevant to you,
they are more likely to be successful than if you “go along”
with whatever might be suggested by your health professional
because you don’t want to cause trouble.
Most health professionals want to help with what’s important to

you but will only know if you tell them.
Patient decision aids can also be useful. These tools are

designed to help people become involved in decision making
by providing information about the options and outcomes and
helping to clarify your personal values.
They are designed to complement input from a health
professional. MS Decisions www.msdecisions.org.uk is an online
decision aid designed to support decision making around the
disease modifying therapies.
There may be some times when you would like more support
making decisions and others when you want to be more
independent.
“Advise me fine – the decision is all mine.”

Carole
“Being fit I put MS on the back burner, I didn’t want any

drugs, didn’t want anything.”
Man with MS – (Taking Control survey)
You may decide on reflection that the time is not yet right for
you to start on a course of treatment. However, make sure that
you know the consequences of deciding not to take a particular
course of treatment and remember that “No” is not forever, a time
may come when you wish to change your decision.
Medication can be a constant reminder of your MS, especially

when you feel well.
It can be difficult if you are taking a number of medicines, for

example to manage different symptoms, to take them all so that
they act effectively. One man managed his medications in the
following way:
•
Measured tablets for next seven days and put them into a
medicine dispenser to ensure correct dosage.
•
Kept a diary of when repeat prescriptions were fulfilled and
diarised requests for two weeks before needed.
•
Used prescription collection and delivery service so did not
have to go to the surgery if feeling unwell.
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•
Kept a seven day emergency supply of tablets separate from
general supply.
•
Arranged with GP to align drugs so that they could all be
ordered at the same time.
•
Attended a medicines review at local pharmacy and built
up a good relationship with pharmacist so that changes in
medication could be discussed and also felt confident to ask
about drug interactions and side effects.
•
Every three months carried out audit of medicine cabinet and
returned drugs no longer required to the pharmacy.
Utilising resources – the value of information
It has been said that the key to successfully living with a long-
term condition like MS is the right information, at the right time,
in the right format. This is supported by government policy and
is at the heart of the NHS Constitution.
You have the right to be involved in discussions and decisions

about your healthcare and be given information to enable you to
do so.
NHS Constitution (2013).
Good quality information in a suitable format supported by

guidance from a health professional has been shown to increase
people’s levels of confidence in the decision making process and
reduce anxiety and isolation.
Whilst many people like to have all the information they can
obtain about MS, other people restrict what they want to see
and a few do not want any information at all. There is no one
right way and your need for information is likely to change over
time.
Where can I access information?
There are many sources of reliable information available including
your health professionals; voluntary organisations; the public
library - particularly a health information point; social services
and the Patient Advice and Liaison Service (PALS) at your local
hospital. The More information section has further details.
How to assess the quality of information

There is an abundance of information available about MS.
A search for multiple sclerosis on Google finds over 800,000
results from UK sources alone, however quality is variable and it
can be difficult to decide which information is to be trusted.
When assessing information from any source, either books or

the internet, questions to ask include:
• Reliable - how authoritative are the authors, do they know

what they are talking about? Do other trusted sources agree
with this information? Is this referenced?
• Up to date - what are the main sources of information used

to compile the publication, what is the date of publication and
any revisions? On the internet when was the website or page
last updated or reviewed?
• Balanced and unbiased - is there a clear indication of

whether the publication is written from a personal or objective
point of view? Be wary if the publication focuses on the
advantages or disadvantages of one particular treatment
without reference to others; if the publication relies primarily
on evidence from single cases; if the information is presented
in a sensational, emotive or alarmist way or if the authors
have something to sell.
The Information Standard is a certification programme for

all organisations producing evidence-based health and care
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information for the public. Any organisation
achieving The Information Standard will
carry the quality mark. This shows that it has
undergone a rigorous assessment to check
that the information they produce is clear, accurate, balanced,
evidence-based and up to date.
Working in partnership with health professionals
An effective partnership is the key to ensuring that you and your

health professionals are working towards goals that you all share
to improve or maintain the quality of your life in ways that are
relevant to you. This collaborative partnership is about shared
responsibility and moves away from the old emphasis of a medical
authoritarian approach. Whilst a neurologist may be an expert in
MS, you are the expert in your MS and how it affects your life.
Increasingly, health professionals are committed to working in

partnership but it is fair to say that not all health professionals are
comfortable with this.
Studies have also shown that not everyone with MS wants to

be an equal partner in making decisions and it is up to you to
decide the level of involvement that you want to have.
This is likely to change over time and may be dependent upon

the decision being made and how you are affected by your MS
at that time.
In order to be a partner in decisions about your healthcare it is vital

that you have all the information that you need to help you to talk
with your health professionals and make informed decisions.
It can be helpful to think about questions in advance

and write them down. Opposite are some examples of
the things that can be useful to ask.
Questions to ask:
•
Can I check that I’ve understood what you said? What you’re
saying is . . . reflect back what you thought was said.
•
Can I be referred to an MS specialist? Is there a choice of
places I could see them? Is there an MS specialist nurse,
physiotherapist, continence advisor, occupational therapist?
How can I make contact with them?
•
Can I have a copy of any letters written about me?
•
Are there any services I would benefit from while I am waiting
for a specialist appointment?
•
Is there anyone in my situation I could talk to while I am
waiting for a specialist appointment?
•
Is there any written material available about managing this
symptom?
•
What happens next – do I come back and see you?
Don’t be afraid to ask for things to be written down and a

second pair of eyes and ears such as a partner or friend can be
helpful to capture all the information. You could makes notes
yourself or even record the session.
If you find it difficult building a partnership with a particular health

professional you can ask to see someone else. Not everyone
gets on with everyone else; this is not necessarily a failing on
anyone’s part.
27 telephone 0800 032 3839

4. Living well
Many people feel that ensuring they remain as healthy as

possible puts them in the best position to deal with the
challenges that MS brings.
Whilst MS itself is unpredictable a healthy lifestyle can have a

positive effect on how it impacts on your day to day life.
Positive ways of staying healthy when living with MS include:
Activity and exercise
Exercise 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’ may be the best approach
considering fluctuations in MS from day to day. It is also
important to know when to rest and when to pace activities.
“Listen to your body – rest when you need to.”

Mary
Exercise improves both general physical and emotional health

as well as improving fitness. It releases good chemicals and
makes us feel more in tune with our bodies and elevates mood.
Research has shown specific benefits of exercise for people
with MS including reduced fatigue levels and improved strength,
mobility and bowel and bladder function.
“When people said exercise gives you energy, I laughed.

I gave it a try and I’ve never felt more alive.”
Anne
Alternatively you may want to find an activity that isn’t too
energetic. There are lots of activities, enjoyed on your own or in
a group, which can provide you with some gentle exercise and
contribute to your wellbeing.
“Exercise when you are at your best.”

Trudy
Tips for exercising:

•
Devise a programme that works for you either with your
physiotherapist, at the gym or at home.
•
When you start your programme don’t go mad and try to do
all the exercises at once, particularly if you haven’t done
much recently.
•
Pick out a couple of exercises that you know you will be able
to do and build up gradually. There’s no point in setting your
target so high that you will not be able to reach it.
•
Pick a day in the week and a good time in the day - not when
you feel at your lowest!
• Modify your exercise regime as you need to.
•
Some people find exercising in a group can be motivating
and fun.

Exercises for people with MS.
www.mstrust.org.uk/exercises
Move it for MS – a free DVD of exercises.
29 telephone 0800 032 3839

Food and drink
No specific diet has been proven to be beneficial for people with

MS. However, there has been research into a healthy diet for
other conditions, notably cardiovascular disease, which is much
more common than MS in the general population.
A healthy well balanced diet and plenty of fluids are important for
optimum energy levels. A high fibre diet can prevent constipation
which can affect symptoms for example spasticity and spasms
may be made worse and bladder symptoms aggravated. Good
nutrition can also reduce the physical risks of weight gain, such as
heart disease and high blood pressure. Gaining weight can also
affect emotions and result in a loss of confidence and self-esteem
in addition to making mobility problems more difficult to manage.

Diet factsheet.
www.mstrust.org.uk/diet
Adequate fluid intake is essential to prevent dehydration and is

particularly important where bladder or bowel problems exist.
Too little fluid can increase the risk of urine infections, tiredness,
headaches, constipation, and so possibly worsen existing MS
symptoms. Recommended guidelines are one and a half litres,
or eight glasses, of fluid a day. Drinks that contain caffeine such
as tea, coffee, cola and some soft drinks are best limited, for
example to a maximum of four mugs of coffee a day. Caffeine can
also irritate the bladder and the same is true of alcoholic drinks.
Health awareness
People with MS remain at risk from the same health concerns

as the general population. For this reason it is important to
recognise changes in your health and not just assume that all
changes are MS related, monitoring your MS for example with a
diary, will help with this.
Regular health checks and attendance at screening programmes

such as cervical smear tests and well woman/man clinics in
addition to breast or testicular examination are important.
In addition to the known health risks associated with smoking

such as cancers and cardiovascular disease, studies have
suggested that people with MS who smoke experience more
rapid disease progression than non-smokers.

Smoking – A-Z of MS.
www.mstrust.org.uk/smoking
31 telephone 0800 032 3839

5. Barriers to self-management
The feelings of grief and loss that can be part of living with MS
can act as a potential barrier to self-management, but recognising
these as part of the condition can be helpful.
Stress, depression and anxiety also reduce the ability to cope and
will therefore have an impact on successful self-management.
Stress
Many people with MS find that managing symptoms and living

with the restrictions and uncertainty imposed by MS is itself
stressful. Minimising stress is a good goal when living with MS
although some stress can be good and to avoid all stress is
impossible. When stress begins to impact in a negative way, there
are strategies you can adopt to manage this.
“Often priorities will change with MS and things that used

to cause stress may no longer do so.”
Carole
The most commonly accepted definition of stress is that it occurs

when a person believes that “demands exceed the personal and
social resources the individual is able to mobilise”. It’s when things
feel out of control and it is the interpretation of a situation that
drives the level of stress that you feel.
Living with MS may require better coping strategies to deal

with stress:
•
Managing your time effectively and breaking tasks down can
help to reduce stress and allow you to feel you have achieved
something in your day.
•
Prioritise – tackle the most important things first and know the
difference between urgent and important.
•
Some people respond well to relaxation tapes, whilst others
find stress relief from exercise, particularly aerobic exercise
which increases your heart rate for example cycling, walking,
using a treadmill or swimming. Exercises which involve
stretching and strengthening the muscles such as Yoga, Tai
Chi and Pilates also help to reduce stress.
•
Listening to music, meditating, reading or listening to a book
on CD are also ways in which to relax.
Keeping a stress diary can be a useful coping strategy:
Look at the different stresses you experience and list them by

frequency with the most common at the top. Make another list with
the most unpleasant stresses at the top. If you look at both lists the
stresses at the top of each are the ones that are most important
for you to learn to control. You can use the diary to find out the
situations that caused the most stress to learn which stressors you
cannot change and to look for ways to cope with them.
“I try not to worry too much about the things that I cannot
change. Not always possible, I know! There are usually
ways around problems and I’m lucky, I have a supportive
husband and really good friends.”
Viv
A job list can be useful:

Job Action
Fred’s birthday You’ve got the card - write and post it
Collect prescription Essential – next time consider
delivery service
Library books due If no time, call or go online to renew
33 telephone 0800 032 3839

Depression
It is estimated that about half of all people with MS will

experience depression at some stage. There are two reasons for
this: one is caused by MS itself and the other is caused by living
with a long-term condition. However, it is still widely believed that
there is a stigma attached to experiencing depression.
“Going to see your GP and being diagnosed with

depression should not be seen as having failed.
Recognising your problems and accepting help is a
positive step in managing your MS.”
Liz
The following may be signs of depression and if you experience

any of these you might want to talk to your doctor or MS nurse:
• persistent sadness lasting more than two weeks, or
unexplained tearfulness
• altered sleep patterns - finding it difficult to sleep or sleeping
too much
• feelings of hopelessness, guilt and low self-esteem –
you lose interest in personal care and the way you look
• reduced energy and inability to concentrate or take pleasure
in anything
• social withdrawal
• thoughts of suicide or death.

Depression factsheet.
www.mstrust.org.uk/depression
“It was a close friend who recognised my depression and
suggested I talk to my GP.”
Liz
“I discussed how I felt with my MS nurse and my GP –

there is medication which helps.”
Jenny
“Some people feel that there is a stigma in taking anti-

depressants. The support group I am involved in refer to
anti-depressants as Happy Pills, as they really are helpful.”
Liz
Anxiety
Living with MS can be a source of anxiety regardless of any

specific medical problems. Altered life circumstances and not
knowing how you will feel from day to day, or from morning to
afternoon, are significant causes of anxiety.
Anxiety can cause a physical response that produces symptoms

such as tiredness, weakness, the urge to go to the toilet and a
blurring of vision.
All of these are similar to symptoms of MS so it may be difficult

to tease out what is caused by anxiety and what is due directly
to your MS.
Too much caffeine in your diet can make you more anxious than
normal and caffeine can disrupt your sleep and speed up your
heartbeat. If you are tired, you are less likely to be able to control
your anxious feelings. Smoking and alcohol can also worsen
feelings of anxiety.
35 telephone 0800 032 3839

Overcoming the barriers
An MS nurse can help through encouraging you to develop

self-help strategies such as relaxation techniques, discussing
fears or distraction techniques. Some things to consider might
also be whether these symptoms might be side effects of any
medication that you are taking and to be aware that alcohol can
also create low mood and make you more anxious.
Many people find that daily contact with family and friends, doing
something they love like going to watch a film, meeting a friend
for coffee or a chat or a trip to a favourite place, are helpful in
improving mood.
Cognitive behavioural therapy may also be useful for depression

and anxiety. This is based on the belief that how we think about
a situation influences how we act, and our actions subsequently
influence how we think and feel. It encourages the adoption of
new thinking and behavioural techniques.
Taking regular exercise and learning how to relax is also

important. You may find relaxation and breathing exercises
helpful, or you may prefer activities such as Yoga or Pilates to
help you unwind.
6. Helpful hints
Over time people find many ways to adapt and find the best ways
of coping with and managing their own MS. Here are some hints
and tips from people who have learnt to live with their MS.
•
Give yourself a treat when things are difficult or you have
coped at a stressful time.
•
Take up a new interest or hobby, something you’ve always
wanted to try. This is a good way to meet others and take
your mind off the day to day stresses that we all face.
“I took up photography a couple of years ago and love it.

On a good day I can go out and take photographs and
on a not so good day I relax in bed and play with them on
the computer.”
Jane
Take some regular exercise. This doesn’t have to be extreme. Even

getting off the bus one stop early, or parking at the other end of the
car park and walking the rest of the way can make a difference.
• Rest is not failure – resting is a coping strategy.
•
Take each day as it comes. Try not to despair if you are having
a really bad day – the chances are tomorrow will be easier.
•
Be honest and open about how you feel. If you go through
a bad patch talk to someone, be it family, friend or health
professional. It really can help to share your feelings.
•
Try to unwind when you are stressed - have a relaxing
bath or go for a walk. You may find Yoga, massage or
aromatherapy useful.
•
Make sure you get a good night’s sleep - but don’t get too
upset if you can’t sleep, have a warm milky drink and listen
to some relaxing music.
37 telephone 0800 032 3839

7. More information
Self-management courses
There are many self-management courses available. Some are

for a variety of different long-term conditions and some are MS
specific. Courses aim to teach you skills to boost your confidence
and live well with your condition.
For information about self-management courses around

the country visit the self-management UK website
www.selfmanagementuk.org
Expert Patients Programme

The Expert Patients Programme is a free six week course for
anyone living with a long-term health condition. The programme
aims to provide support and develop self confidence to help
you feel more in control. Your local NHS community healthcare
organisation can help you find courses in your area or you can
Google ‘Expert Patients Programme’ and the town or city where
you live.
MS specific self-management courses

Your MS specialist nurse or occupational therapist may also run
self-management programmes, or courses on managing specific
aspects of MS such as fatigue.

Find your MS specialist nurse on the Map of MS Services.
www.mstrust.org.uk/map
Information from the MS Trust
MS Trust Information Service

If you have specific questions on any aspect of MS,
contact our team of information officers on 0800 032 3839 or
[email protected]
MS Trust books and factsheets are free and can be ordered by

ringing 01462 476700 or by email at [email protected]
All titles can be read or ordered online at www.mstrust.org/pubs
Keep up to date with news about research and the world of

MS by signing up for Open Door, the MS Trust’s free quarterly
newsletter, or our weekly email alerts. Ring 01462 476700,
email [email protected] or signup online at www.mstrust/
in-touch
Other resources
• A-Z of MS
this covers a wide range of information about symptoms,
management and sources of support
www.mstrust.org.uk/atoz
• At work with MS
www.mstrust.org.uk/at-work
• Diet factsheet
www.mstrust.org.uk/diet
• Depression factsheet
www.mstrust.org.uk/depression
• Living with fatigue
fatigue management for people with MS
• Making Sense of MS
a resource for people who have recently been diagnosed
www.mstrust.org.uk/msoms
39 telephone 0800 032 3839

• Map of MS services
www.mstrust.org.uk/map
• StayingSmart
a resource to help you understand and manage cognitive
problems
www.stayingsmart.org.uk
Online support
• MS people UK
An online community for those with MS, their families and
friends
www.ms-people.com
• MS Trust online communities
Facebook group, twitter and blogs
www.mstrust.org.uk/interactive/socialnetworks/
Notes
41 telephone 0800 032 3839

About the authors
Nikki Embrey
Clinical Nurse Specialist MS, North Staffordshire University Hospital
Nikki has extensive experience of working with people living with MS
and is passionate about supporting people to gain the skills necessary
to become effective in self-management. Nikki highlighted a need for
this publication to encourage people to become partners with their
healthcare professionals and make decisions about treatment and
lifestyle choices that are right for them.
Lynn Fox
Information Officer, MS Trust
The MS Trust is a leading independent UK charity for people with
MS, their family and friends. The MS Trust Information Service
provides a personalised enquiry service: produces many publications;
Open Door, a quarterly newsletter; and web based information.
Contact us to receive free information.
Thank you to
All the people affected by MS who have shared their experiences
in the development of this book to help others become confident in
living life with MS to the full.
Please contact the MS Trust information team if you would like
any further information about the reference sources used in the
production of this publication.
This edition published in 2015
This publication will be reviewed in three years.
Bibliographical information
Nikki Embrey, Lynn Fox
MS and me: a self-management guide to living with MS.
© 2015 Multiple Sclerosis Trust
Registered charity no. 1088353
All rights reserved. No part of this book may be produced, stored in a

retrieval system or transmitted in any form by any means, electronic,
electrostatic, magnetic tape, mechanical, photocopying, recording or
otherwise without written permission of the publisher.
We hope you found this book useful.
Could you make a difference for even
more people living with MS?
It’s only thanks to donations from people like you that the
MS Trust can continue to provide free, reliable, practical
MS information.
We’re online, on the phone and in print with the right
information at the right time for anyone affected by MS.
Making a donation is quick, simple

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Give us a call Text Make payable
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Registered charity no. 1088353
Thank you
318-MS AND ME.03.15.10K
Multiple Sclerosis Trust

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Registered charity no: 1088353

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MS and me

MS Trust information service

The MS Trust offers a wide range of publications, including a

To support you in managing your MS successfully we have

Self-management is something you probably do all the time but

MS is unpredictable but you can learn to understand what affects

Self-management can enable you to control the things you can

Of the estimated 100,000 people living with MS in the UK the

“Self-management is about knowing how to recognise the

5 telephone 0800 032 3839

People who are most likely to successfully self-manage

The impact of a diagnosis of MS on people varies. Some people

The psychological adjustment to a diagnosis of MS might include

As MS can cause physical and psychological changes that can

It takes time to come to terms with a diagnosis of MS; this is a

“I accepted the diagnosis; in fact it was a relief to know

Other MS Trust resources

Successfully adjusting to life with MS has been linked to learning

7 telephone 0800 032 3839

It helps to understand how you react to the ups and downs of

Linked to this is self-esteem; the respect, regard, value and

“After I told my neighbour that I had MS she would cross

However, successfully meeting the challenges that living with

“Getting the diagnosis of MS was the kick start I needed

Many factors can affect how you apply self-management skills

Ways to build and maintain self-esteem and a positive

“Getting involved with a voluntary group helps me feel

Taking a positive approach

A person with a positive approach recognises the negatives

Just looking at things from a different point of view can be helpful,

‘Today I’ve got to do x…’ sounds as though you’re acting for

9 telephone 0800 032 3839

Identify and challenge negative thoughts and behaviours.

Knowledge is power – monitoring your MS

The idea of self-management is based on understanding your

One way to achieve this better understanding is through

Keeping a diary specifically to monitor your MS can be a helpful

Apps can also help you to monitor symptoms some of which

11 telephone 0800 032 3839

13 telephone 0800 032 3839

When was the relapse?

Questions to ask MS nurse

Setting goals gives you focus and a sense of achievement when

Your goal should be important to you, something which you can

“Fatigue was always a huge problem for me. I made

15 telephone 0800 032 3839

Specific I want to feel less fatigued at work.

“I find I can achieve more when tasks are divided into

There are many approaches to problem solving which can help

“Each problem that I solved became a rule which served

Identify the problem I’m exhausted by the time I reach work

List ideas to solve the problem

If you are exhausted after driving to work you might consider;

17 telephone 0800 032 3839

Select a method to try

This section considers how the strategies and techniques

Experiencing a relapse can bring home the diagnosis of MS again.

In the early stages of MS it can be difficult to recognise what

You may be having a relapse if:

A relapse can be considerably longer than 24 hours and may go

19 telephone 0800 032 3839

You may then:

Dealing with symptoms

• Reliable - how authoritative are the authors, do they know

• Up to date - what are the main sources of information used

• Balanced and unbiased - is there a clear indication of