Living with MS
You may have to adapt your daily life if you’re diagnosed with multiple sclerosis (MS), but with the right care and support many people can lead long, active and healthy lives.
Self-care is an integral part of daily life. It means you take responsibility for your own health and wellbeing, with support from people involved in your care.
Self-care includes the things you do each day to stay fit, maintain good physical and mental health, prevent illness or accidents, and effectively deal with minor ailments and long-term conditions.
People living with long-term conditions can benefit enormously from being supported to care for themselves. They can live longer, have a better quality of life, and be more active and independent.
Although you’ll probably be in regular contact with your care team, you should also have a comprehensive review of your care at least once a year.
This is a good opportunity to discuss your current treatment, mention any new problems you’ve having, think about any further support you may need and be kept informed about any new treatments that are available.
Make sure that you let your care team know about any symptoms or concerns you have. The more the team knows, the more they can help you.
Healthy eating and exercise
There’s no special diet that has been proven to slow the progression of MS, but a generally healthy, balanced diet can help you manage specific problems such as fatigue and constipation. It can also reduce your risk of other health problems, such as heart disease.
Regular activity and exercise is important for both general health and fitness. Research has shown specific benefits of exercise for people with MS, including reduced fatigue and improved strength, mobility, and bowel and bladder function.
Smoking is associated with an increased risk of a wide range of health conditions and it may also increase the speed at which MS gets worse.
If you smoke, stopping may help to slow the progression of your MS.
If you have significant disability related to MS, you’ll usually be encouraged to get a flu jab each autumn.
However, vaccines that contain live organisms – such as the BCG (TB) vaccine and one form of the shingles vaccine – may not be suitable if you’re having treatment with some (but not all) of the disease-modifying therapies.
These treatments can weaken your immune system, which means live vaccines may not work or could make you ill.
Relationships, support and care
Coming to terms with a long-term condition such as MS can put a strain on you, your family and your friends. It can be difficult to talk to people about your condition, even if they’re close to you.
Dealing with the deterioration of symptoms, such as tremors and increasing difficulty with movement, can make people with MS very frustrated and depressed. Inevitably, their spouse, partner or carer will feel anxious or frustrated as well.
Be honest about how you feel and let your family and friends know what they can do to help. Don’t feel shy about telling them that you need some time to yourself, if that’s what you want.
If you have any questions, your MS nurse or GP may be able to reassure you or let you know about the other support that’s available. You may find it helpful to talk to a trained counsellor or psychologist, or to someone at a specialist helpline.
Some people find it helpful to talk to other people who have MS, either at a local support group or in an internet chatroom.
Care and support services
It’s worth taking time to think about your specific needs and what you might need to achieve the best quality of life. For example, if your balance and co-ordination are affected, you may want to think about equipment and home adaptations.
It may be useful to read your guide to care and support. It includes information and advice on:
- Planning for your future care needs
- What social care services are available
- Choosing care services
- Care services in your home
- Practical support for carers
Having a baby
Being diagnosed with MS shouldn’t affect your ability to have children. However, some of the medication prescribed for MS may affect fertility in both men and women.
If you’re considering starting a family, discuss it with your healthcare team, who can offer advice.
Women with MS can have a normal pregnancy, deliver a healthy baby and breastfeed afterwards.
Having a baby doesn’t affect the long-term course of MS. Relapses tend to be less common in pregnancy, although they can be more common in the months after giving birth.
You may need to continue taking medication throughout your pregnancy. However, some medication shouldn’t be taken during pregnancy, so it’s important to discuss this with your healthcare team.
Money and financial support
If you have to stop work or work part-time because of your MS, you may find it difficult to cope financially. You may be entitled to one or more of the following types of financial support:
- If you have a job but can’t work because of your illness, you’re entitled to Statutory Sick Pay from your employer
- If you don’t have a job and can’t work because of your illness, you may be entitled to Employment and Support Allowance
- If you’re aged 64 or under and need help with personal care or have walking difficulties, you may be eligible for Personal Independence Payment or Disability Living Allowance
- If you’re aged 65 or over, you may be able to get Attendance Allowance
- If you’re caring for someone with MS, you may be entitled to Carer’s Allowance
- You may be eligible for other benefits if you have children living at home or if you have a low household income
- Care and Support guide: benefits for carers
- MS Society: benefits and money
- MS Trust: working and studying with MS
- MS Trust: benefits
- UK: benefits
- Money Advice Service
If you’ve been diagnosed with MS, you must tell the Driver and Vehicle Licensing Agency (DVLA) and also inform your insurance company.
In many cases, you’ll be able to continue driving, but you’ll be asked to complete a form providing more information about your condition, as well as details of your doctors and specialists. The DVLA will use this to decide whether you’re fit to drive.
- UK: MS and driving
- MS Trust: driving and transport
- MS Society: mobility, driving and transport
- Rica guide: Motoring with MS
Information taken from: https://www.nhs.uk/conditions/multiple-sclerosis
- MS Specialist Nurse Service
- MS Specialist Nurse Disease Modifying Therapy Clinic
The MS Society
The MS Society is the UK’s leading MS charity. Since 1953, we’ve been providing information and support, funding research and fighting for change. It supports people affected by MS and works to enable everyone affected by MS to live to their full potential as members of society by improving their conditions of life, and it promotes research into MS and allied conditions.
Tel: 0808 800 8000
Multiple Sclerosis Trust
Providing information that can be trusted, supporting the MS specialist you need
Tel: 0800 032 3839
The Multiple Sclerosis Therapy Centre
The Multiple Sclerosis Therapy Centre Norfolk [MSTCN] is a registered charity providing services, information and support to all those affected by a long term neurological condition. It is a member of the UK national MST organisation.
Tel: 01603 485933/488561
Multiple Sclerosis Research Treatment and Education (MS Research)
Tel: 0117 958 6986
MS Specialist Nurse Service
East Outpatients Level 4
Norfolk and Norwich University Hospital
Tel: 01603 287268
If you require urgent medical advice please contact your GP or if out-of-hours 111 service.
Otherwise you can contact the telephone number listed above which is an answer phone service. Please leave the following information:
- Your full name
- Hospital number or date of birth
- A telephone number you can be called back on
- The reason for your call
The MS nurses will listen to your call and book you into the telephone advice clinic which is on a Tuesday afternoon and a Friday morning. Please indicate in your message which clinic you would like to be booked into.
Generic information to be added which is relevant to all diseases:
Making or changing an appointment
Coming to an appointment