"How belly dancing has helped me and my MS"


3 August 2021

A multiple sclerosis diagnosis can make some people feel as though they have to give up the activities they love. We spoke to Michelle who told us about her MS journey and how despite initial concerns, she was able to get back into belly dancing, which helps lifts her mood.

Hi, I'm Michelle, I live in Kent and am a 39-year-old mum to a six-year-old boy. My first experience of MS was very sudden. I woke up for work one day with a cold and noticed my feet were numb. Over the course of a week, it spread up to my shoulders; I was tingling, my legs felt detached and wobbly and I had what I now know is the 'MS hug'. I also had Lhermitte's sign every time I bent my head forward. GPs and A&E didn't know what was going on so I just rested and kept a neurologist appointment in case all of the symptoms didn't go away, which some didn't.

As soon as I saw a neurologist (a month before my wedding), she knew what was going on and following an MRI, diagnosed me with Transverse Myelitis/ Clinically Isolated Syndrome. I was left thinking I may go on to be diagnosed with MS or it may be a one off but I could put up with the tingling feet and legs so tried to put it out of my mind.

Whilst on honeymoon, I had a relapse but didn't realise it at the time - I just thought the heat was getting to me. Once we got home, I didn't improve and I was having new issues with my legs not working properly. I had another MRI which confirmed new lesions and I was diagnosed only six months after my first symptoms.

I must admit I got very down about it all but tried to carry on working and socialising as usual. Then another relapse set me back and left me with terrible cog fog and fatigue that made me feel sick and disorientated. I felt like giving up because I felt so different and 'out of it' all the time. Driving to work five days a week was a struggle and I worried about losing my job.

I had to learn to pace myself, something which has taken me a long time to do.

Getting down about it made my fatigue worse, something which I am very conscious of now and try to avoid, although it is easier said than done! I really struggled walking any distance and it was hard to do everyday things like shopping and cleaning. I had to learn to pace myself, something which has taken me a long time to do.

I have loved belly dancing for 20 years now but when I got diagnosed with RRMS nine years ago, I never thought I'd be able to do it again. It's been a slow old journey but now I'm back to doing what I love at last. When I was first diagnosed, I didn't try to dance for a long time as it was too hard. Then I'd try over the years but overdo it, get frustrated and exhausted, then give up again. In the end, I decided to do five minutes a couple of times a week, before bed so I could collapse and go to sleep after. I managed to build it up very slowly over the months and after 18 months (and the benefit of having less to physically do in lockdown), I can now dance for half an hour or more.

I've even been asked to perform in some online shows now which I never would have considered a few years ago.

I've been doing workshops and classes online too. Some days I just can't do it but other days it actually makes me feel better if I'm having a bad day, as long as I don't push myself too much. It definitely helps me feel more positive too as the music is so uplifting.

I have to plan when to dance around the things I need to do like school runs and work but I've even been asked to perform in some online shows now which I never would have considered a few years ago. Work have been brilliant and found me a role as a PA working for a team where I don't need to physically be in the office, and since I've had my son I work part-time.

I'm very fortunate that I've not had any relapses since the ones around my diagnosis but the symptoms are still very much there every day. I hope that my experiences may give someone else hope that, even a long time after diagnosis, you can pick up doing something you love again if you build it up gradually.

To share your story like Michelle, email mystory@mstrust.org.uk.