Living with MS

‘The face of MS is changing. We can do more than we think. Don’t let anyone tell you otherwise, including yourself.’

Living with MS doesn’t mean giving up on your ambitions, just rethinking how to achieve them.

Article medically reviewed by Karen Vernon an MS Nursing Specialist at Salford Royal Foundation Trust.

Being told you have multiple sclerosis is a life-changing moment. But after that moment passes and the news starts to sink in, for many people with MS it’s inevitable that thoughts turn next to what living day-to-day with MS will actually be like.

Will life ever be the same again? Can you live a normal life with MS? Of course, if you have multiple sclerosis, life won’t be completely the same as it was before you started to experience symptoms, but there’s no reason – with the right treatment and a proactive approach – you can’t lead a full and rich life.

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What will living with MS be like?

When you’ve been diagnosed with multiple sclerosis, it’s understandable that you’ll need to adapt. MS is a lifelong condition, with no cure, and there will be challenges along the way. 

Many people living with MS report periods where they can function perfectly well, particularly if you have relapsing remitting multiple sclerosis (RRMS) in which life between relapses really can feel relatively normal. A relapse occurs when symptoms appear suddenly or become noticeably worse; sometimes other factors can also exacerbate MS symptoms such as an infection. 

The vast majority of people with primary progressive MS (PPMS) don't experience relapses or remission. Symptoms gradually worsen over time, but there are still periods of time where their MS appears inactive. It is difficult to determine a timeline for disease progression as this varies from person to person. 

MS doesn’t mean putting your life on hold. With the variety of disease modifying therapies (DMTs) available and extensive evidence that managing lifestyle factors such as diet and exercise can slow disease progression, your future is still very much within your control. Some people with MS may choose not to take DMTs or may have limited options; this is the decision of each individual MSer, in alignment with their healthcare team.

‘I did lose a part of myself, but I also learnt that just like a diamond I’m extremely hard to break and I still have a world of possibilities in front of me.’ @Darinka

Getting help and support

There’s a lot to think about when you’re living with multiple sclerosis. While your health might rightly remain your top priority, there are some practical issues you’ll need to deal with, too. Driving. Money. Benefits. Work. It’s not the most glamorous to-do list, but the impact of MS on your life can be wide-reaching. Here are some of the things you’ll need to think about.

Driving with MS
Financial help with MS
Working with MS
Finding emotional support

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Diet and exercise

Eating well and staying active can help you to manage multiple sclerosis and living with the condition. Practising a healthy diet and taking regular exercise doesn’t have benefits exclusively for MS, of course – it’s good practice for everyone to look after themselves as well as possible. But it can have a positive effect on overcoming MS symptoms.

‘After two years of reading, learning more about the disease and how to listen to my body even more, and adjusting my diet and lifestyle, I was ready to get it out there. I decided to run 100K for TheMay50K to raise money for MS Research and to show everyone that, despite a diagnosis, we are still able to do a lot.’
@Jeanette73

You don’t need to do anything special, or embark on the latest trendy diet. Just eat sensibly, aiming to include plenty of fruit, vegetables and fish, if you can, and avoid eating too much red meat and fatty foods. You should be aiming to eat well, not to lose weight, and you can still treat yourself to a few guilty pleasures – there’s nothing wrong with your favourite takeaway now and again!

The same goes with MS and alcohol. Just like everyone else, alcohol in moderation is usually fine, but try to stay within recommended weekly limits. If you are on medication for MS symptoms you’ll need to make sure that the consumption of alcohol won’t affect the medication or cause other serious health issues. 

If you’re a smoker, it is advised that smoking is cut out completely. There is mounting evidence about the detrimental effect of smoking on MS and disease progression. Stopping smoking is a positive step for both MS and overall general health.

Exercising and movement can be hugely beneficial, in improving your mental health as well as helping to keep you mobile and active. How you choose to exercise depends on your own level of mobility and fitness – always listen to your body – but even a gentle walk, yoga and pilates, stretching while seated, or a spot of leisurely gardening is worth it.

If you’ve always been physically active, there’s no reason that you can’t continue to be so, within the limits of the levels of activity that you feel comfortable with. If you run, cycle, swim, play a sport – carry on, as often as possible. You don’t have to give up the things you love just because you have MS, but you may have to adapt your approach or involvement to manage your MS. 

‘When I was given my diagnosis, it was one of the first questions I asked my neurologist: ‘Can I still do Jiu Jitsu?’ I am a blue belt now, nearly four years later. It’s still early days for my Jiu Jitsu, and it’s still early days for my life with MS. My mind needs one to help fight the other.’ @MaebChronic

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Sources:

https://www.nhs.uk/conditions/multiple-sclerosis/living-with/

https://www.mssociety.org.uk/care-and-support/everyday-living

https://www.mssociety.org.uk/care-and-support/financial-help

https://www.mssociety.org.uk/care-and-support/everyday-living/getting-around/driving-and-dvla

https://www.mstrust.org.uk/information-support/newly-diagnosed/life-choices

https://www.gov.uk/pip

https://www.gov.uk/multiple-sclerosis-and-driving