We help people to live well with MS
MS is a complex condition that affects everyone differently. You’re the best person to know what helps you on a day to day basis – we want to give you the resources and information to enable you to do that, and to live well with your MS.
With a long-term condition like MS, you may see health professionals more or less frequently, but MS is with you all year round. Self-management, to us, means all the things that you can do for yourself in between visits to your neurologist, doctors or nurses.
In 2018/19, our Information Team are focusing on self-management – providing you with the strategies to live well with MS.
During the forthcoming year, we’re reviewing our resources to help you live well with MS. By giving you the support of our evidence-based information, developed under NHS England’s Information Standard, we aim to ensure that no-one has to manage MS alone.
If you’d like to be involved in any of these projects – either to review and comment on the content, to help with the usability of our website, or to tell your own story, get in touch by emailing firstname.lastname@example.org.
MS and me
Our definitive guide to self-management underpins how to live well with MS. It identifies the things that you probably already do all the time, but don’t realise it. As clinical nurse specialist Nikki Embrey says in the current edition:
“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.”
The information in MS and Me is being fully up-dated and we’re planning some online resources as well as updating the practical strategies outlined in the current book.
Sex and MS
Research shows that more than half of men with MS and up to three quarters of women with MS will experience sexual problems at some point in their lives. You may find it awkward or embarrassing to talk about sex, so we’ve developed resources to help you understand what’s happening, ideas on how to enjoy as full and varied a sex life as you wish, and give you the confidence to raise any questions with your health professional.
Bladder and bowel
These are common symptoms in MS, which can have a big impact on many aspects of your daily life. Understanding your bladder and bowel can give you the confidence to manage those issues. With the right support and information, most bowel problems can be overcome, and avoiding infections goes a long way to managing your bladder.
About half of all people with MS have problems with aspects of thinking, perhaps with memory, attention span or concentration – collectively known as cognitive problems. Keeping your brain healthy and active through reading, creative activities or puzzles, can really help. The content of our dedicated website about cognitive difficulties in MS StayingSmart was fully updated in July 2017, providing ways to maximise brain health.
But as technology moves on, we are planning to update it further to improve the functionality in mid-2019.
Many people with MS try making changes to their diet to manage their symptoms and long-term experience. During Spring 2018 we reviewed all our online dietary information to help you distinguish between fact and fad. You'll find it all together in our Diet section. We’ll carry on looking for more practical tips you can use in your own kitchen.
One of the most common and debilitating symptoms of MS is fatigue. Our book Living with fatigue was fully updated in April 2018, along with our online information. There are many tips and techniques to help you manage your fatigue, plus we’re exploring how we can create online resources to support you more fully.