MS and life choices. An introduction to. How can you make the best choices after your diagnosis with MS? What are life choices?

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1 How can you make the best choices after your diagnosis with MS? You may be worried that MS is going to make a difference to your path in life and affect the choices that you have. This resource looks at how people make good choices at any time in their lives and puts forward suggestions when making life choices after diagnosis with MS. The symbol will point you to further resources. An introduction to MS and life choices What are life choices? Life choices can be the big decisions in your life, like whether to get married or move house. There are also many smaller life choices such as how much you exercise and who you have as your friends. All of these choices add up to set your direction in life. Making life choices is an ongoing process for everyone. We may think we know where we are going in life but then something (or someone) comes along to make us reconsider. It may be a welcome wake up call that prompts us to get out of a rut. It could be a surprise that throws us off course, at least for the time being. Will MS affect my life choices? MS is often diagnosed when someone is in their 20s or 30s and is making some of the big life choices like whether to follow a particular career path, settle down with someone and have children. If MS is diagnosed later, there may still be key decisions to make such as whether to financially support older children through university, go on a world cruise or change career. You may be worried that MS is going to make a big difference to your path in life and alter what choices you have. As everyone s MS is different, it s not possible to predict exactly how a particular person will be affected and, consequently, whether this could change their path in life. However, people with MS will naturally need to review their life and make choices just as everyone does from time to time. We hope that this information will be helpful in that process. In the short-term Symptoms will vary from day to day and from year to year and this may take a bit of getting used to. If you are newly diagnosed, you may begin treatment and this may improve daily life. It will probably be too early to anticipate what life with MS might be like in the longer term.

2 People with MS will naturally need to review their life and make choices just as everyone does from time to time. Life does not stop at diagnosis and it s usually best not to make major decisions too soon. Like many things, MS may influence the path your life takes and the choices that you make along the way. Don t feel pressured by others, possibly including health professionals, to decide something that you are not ready for and, perhaps, may never need to decide. In the longer term As you adjust to your diagnosis, you may like to review your life just as many people periodically think about where they are going. For some people, the symptoms of MS may prompt a change in some aspect of their life. In the following sections, we offer some suggestions and highlight sources of information and support that might help you in making any decisions. How can I make the best choices for me? Making any choice in life is a very personal decision although you may like to consult others and consider taking their views into account. This information aims to give you ideas, make suggestions and get you thinking. We can point you to sources of information about MS that may help but only you can decide what you d like to do in life and what s possible. You might like to consider these questions: What s important to you? - What are the priorities in your life? This can include the people closest to you. - What are your goals in the next few years? Write them down as simply as possible. Keep the list short a top three or top five can be good. - Where should you make a start? You can t do everything at once so you might begin with the most important or the most urgent goal. - How can you get motivated and organised? Leaving things to chance is unlikely to get you to your goals. How do you usually make decisions? Your usual approach to life may influence your choices. - Are you a risk taker or cautious? Do you tend to carry on regardless? - Do you usually make your own decisions or do you often rely on advice from others? - Do you like to get background information and weigh up the pros and cons or do you prefer to go forward based on gut instinct? - Is your usual approach the one you d like to adopt or would it work better to go about it in a different way? Part of the Making Sense of MS series from the MS Trust

3 What are your goals in the next few years? Write them down as simply as possible. Keep the list short a top three or top five can be good. Is there an MS factor? For some people who are newly diagnosed, life will carry on exactly as before. For others, MS may be having an impact and managing this well can make a big difference. You might like to consider: - Are symptoms affecting what you can do? - Are you still adjusting to a new treatment? Do you have any concerns, perhaps over possible side effects? - Are you pacing yourself well or trying to do too much? - Do you get fatigued, either mentally or physically? - Would it help to negotiate some changes? This could be at work or college, in your family or social life or in your leisure activities. - How do you feel about your diagnosis at the moment? Do you feel OK? Do you feel knocked for six? What happens after diagnosis? Living well with MS Working and studying with MS Treating symptoms Getting the right balance Although it can be good to set priorities or goals and then actively work towards them, many things in life are about getting the right balance. You might like to think about the balances between: - Work and everything else in your life. - Family time and me time. - Looking after others and looking after yourself. - Being busy and doing something relaxing. - Taking care of your body and your mind. - Being cautious and enjoying life. What s on my priority list? Everyone will have different priorities and only you can say what s most important to you. The topics could be as large as a career change or smaller like getting better sleep. You might like to get some background information or ideas. We have information on the following topics which may help. Learning about MS These resources could be helpful if your priorities include learning more about MS and how to manage it: About MS Relapsing remitting MS: an introduction Primary progressive MS: an introduction Secondary progressive MS: an introduction Treating symptoms

4 Would it help to negotiate some changes? This could be at work or college, in your family or social life or in your leisure activities. Family and friends These resources could help you talk about MS to those closest to you, including children, or if you are considering becoming pregnant: Telling people A short guide to understanding my MS (to give to others) Kid s guide to MS (for 6-10 year olds who have a parent with MS) Pregnancy and parenthood factsheet Talking with your kids about MS Young person s guide to MS (for year olds who have a parent with MS) Work and education These resources could help if you are considering changes at work or college: Telling people Working and studying with MS A short guide to understanding my MS (to give to others) Getting support These resources explore getting support from the MS community, the MS Trust and others: Sources of information and support Publications for people with MS from the MS Trust Your MS team These resources explain about the management of MS and the health professionals who will support you: What happens after diagnosis? Making the most of appointments Treating symptoms Disease modifying treatments: an introduction Improving overall health These resources explore how making changes to your lifestyle could improve overall wellbeing: Living well with MS MS and your feelings MS and me. A self-management guide to living with MS Tips for living with MS Money These resources could help you review your finances: Benefits: Grants:

5 Nobody knows what life has in store for them. Try not to assume that MS will have an effect on some particular aspect of your life. What are the next steps? If you ve decided on the top few things to tackle and done any background reading you need, what are the next steps? Here are some suggestions: - If the topic is a large one or a tricky one, you could think about tackling it in stages so that each part is more manageable and you can see that you are making progress. - Consider talking to family, friends, health professionals or colleagues to get their support and suggestions. - Focus on what you can do. Are you being realistic? - Consider being flexible so you can adapt your plans or goals if circumstances change. The bottom line Nobody knows what life has in store for them. Try not to worry too much about what might happen or assume that MS will have an effect on some particular aspect of your life. This time and energy could be spent in a more positive way on something that is important to you right now. It is good to have something to aim for and then congratulate yourself on your achievements, big and small. It s your life so be true to yourself and make the most of it.

6 Everyone will have different priorities and only you can say what s most important to you. Multiple Sclerosis Trust Spirella Building, Bridge Road Letchworth Garden City Hertfordshire SG6 4ET T T E. info@mstrust.org.uk Registered charity no Making Sense of MS This information is part of a set of resources for people who are newly diagnosed with MS. You might like to look at our introductory resource, Making Sense of MS, which answers the questions most commonly asked around the time of diagnosis. Jane Havercroft MS and life choices 2014 Multiple Sclerosis Trust This edition published 2014 This publication will be reviewed in three years. 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. Produced by VerdiCotts Design MS and life choices k