Adapting to progressive MS – and fighting back with a paintbrush

I was neonatal nursing and determined to carry on working for as long as possible. To cut a long story short, I retired in 2012, because my symptoms were getting worse. I still loved my work and was very sorry to leave.

After retiring I wanted to find something to do that’s really purposeful.

I’ve always been interested in art - my house was full of pictures. So I joined an adult education art class, which I thoroughly enjoyed. It felt so natural.

Adapting to progressive MS

I started using a scooter about 7 years ago, and more recently an electric wheelchair. The wheelchair and the art went hand in hand.

I’m a messy painter - my little scooter was getting completely covered in paint. I quite enjoyed that actually, it became like an artwork itself!

I paint with my right arm. My left arm gets very heavy. There’s a lot of things that are hard to do without the use of both arms. I can’t knit – so I’m trying to find a way to knit one handed.

It helps if you can adapt and if the people around you can adapt too. I use my teeth and my mouth quite a lot, for example to tie scarves.

My family are fantastic and help. I can worry about what I would do if I had an accident and hurt my right hand, but I don’t dwell on it.

Art inspires me and lifts my mood

Since I started painting I’ve hardly stopped. They say it takes 10,000 hours to become an expert in anything, so at first I aimed for those lofty heights. Now I spend three or four hours a day on art. I’m a long way off 10,000 hours but with practice you keep getting better and better.

Art allows me to immerse myself in an activity that brings me satisfaction and purpose in the face of the dreaded MS.

It helps fill my time with something that inspires me, and it’s been a great mood elevator.

I love colour and shapes and am always on the lookout for things to paint. They could be on the internet or around me in the house or garden. My three dogs are good models and my ipad is an invaluable source of reference material.

I post my finished pieces on social media, and look daily to see how many likes they attract, which I find good for my self belief. And it puts me in touch with other artists.

Finding purpose and identity

Art keeps me sane and gives me an identity as an artist, as opposed to the one who is in a wheelchair, who has MS.

I have sometimes felt that people like me, with advanced MS, are not seen as important. Being excluded from treatments and trials for new drugs, and then being told there is nothing for you is very discouraging. The news of the ChariotMS trial is wonderful.

It would be fantastic if there were more treatments for people with advanced MS. Hand health is as important as leg health.

And I would say never underestimate the need for good mental health when facing something so enormous as MS. People find enough excuses to leave you isolated. But rather than getting down, I fight back with a paintbrush.

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Advanced MS and treatments

There are no treatments that can control advanced MS itself, but there are things that can help with the symptoms. Find out more