Finding the perfect volunteering role

My MS diagnosis was quick. In December 2002, I noticed my right leg felt numb. I went to A&E and spent the next three weeks in hospital having various tests. My final MRI coincided with my 30th birthday. Then I was discharged with my diagnosis. I wish there was more support and information back then. So much has changed in the last 20 years. 

Joining my local group

I’ve been a Regional Development Events Volunteer for about a year now. But prior to this, I’d been volunteering for my local Braintree MS Group in various roles since 2006.  

While looking at the responsibilities I had in my volunteering roles and what I enjoyed most, I realised I wanted to step back from the Coordinating Team. However, I still wanted to be involved with the information events we’d been running with the MS nurses. I’d been helping out at our local 'Getting to Grips' courses for people and their partners/carers who have recently been diagnosed with MS, and other information events, for many years. This is what I enjoyed the most, even with my occasional stutter. 

When I decided to leave my role with the Coordinating Team, many people said they were sad I was stepping down. But I felt that the biggest difference I made was supporting people at the events. I decided I couldn’t give that up. 

Finding the right volunteering role

I had a conversation with Gina, the Regional Development Officer in my area, who organises lots of information events. She told me about a new Regional Development Events Volunteer role. 

I was nervous at first because it covers the whole of the East of England and I wondered how I'd juggle it with my other obligations. However, I still wanted to support the MS community, so I decided to give it a go. 

Gina knows I work part-time so if there’s an event I can’t attend or it’s too far, it’s not a problem. If I’m not feeling up to something, I don’t feel bad as everyone understands. The flexibility makes working around my other commitments, and my MS, easier. I can pick and choose when to do things and there’s always someone in the background to take over or help out.

Find out more about volunteering with us

What my role entails

As a Regional Development Events Volunteer I help to plan and deliver activities and events which provide information for people living with MS. I'll identify suitable venues for the events, get quotes and check availability. Gina and I will check them out together before she books one.

I love to help others with MS and connect with people. So when it comes to the event, I do whatever is needed. I’ll help set up the space or sometimes just welcome and talk to people. 

If it’s appropriate, I’ll give a short presentation about living with MS and share hints and tips I find useful. However, it’s my choice to do this as it’s not an official part of the role.

Gina and I work well together because we have the same aim – to help people with MS realise they're not alone. 

Looking after myself

My MS means that I get tired, especially in the late afternoon. Unlike many people with MS, I only have spinal lesions. But whilst I have no damage to my brain, it still affects messages transmitting down my spine so it increases my stammering and affects my legs a little. 

I’ve lived with MS for over 20 years and have learnt to take time out to recover or store energy for later. I’ve made necessary adjustments. I only work one day a week in addition to my volunteering as I’m also a single parent. 

When I have the energy, I go swimming in registered open water lakes all year around. I bought a campervan a couple of years ago, so I can travel the country. It’s great because when I’m tired on longer journeys, I can just pull over and have a little nap! 

I love meeting and supporting others

For me, the best things about volunteering are meeting new people, seeing how local groups do things differently and working alongside passionate and supportive people. 

It’s really rewarding to feel like I’m making a difference to everyone who attends our events. Whether that’s by making them feel welcome or providing a safe space to express their worries.

I’ve met so many amazing people living with MS over the years and we’ve been a great support for each other. 

If you’re interested in the Regional Events Volunteer role in your area, then please get in touch with the Regional Development Team to find out more.