I’ve become part of an extraordinarily wonderful second family

I’m a wife and mother of two. Our son was eight, and our daughter was one, when I was diagnosed with relapsing remitting MS in 2001. 

This was completely unexpected. I knew nothing about MS and my initial symptoms had disappeared before my diagnosis. I left my appointment knowing that I had MS. But I decided that, if I ignored it, it wouldn’t affect me. 

How wrong was I? My initial plan was to carry on regardless, and trust that my MS wouldn’t have any impact on my life. Unfortunately, much as we might like it to, MS doesn’t work like that! 

Taking the plunge

By about 2005 I was using a stick to walk. And within three years had progressed to using a pair of elbow crutches for short distances and a scooter for longer ones. 

I was advised to be more open about my diagnosis, by making contact with a local support group. At the time I was working full time in customer services, so I thought I’d be able to do this quite comfortably — wrong again! 

I remember making it as far as the open door of the venue where the local MS group held their monthly meeting. And then, unable to go in, I burst into tears instead! I was quickly spotted by the then Group Coordinator (GC). They helped me into the meeting room and spent the entire time listening and talking to me.

From that first time, I became a regular visitor to the Hinckley and District Group’s monthly drop-in. I made many friends and appreciated getting to know other people living with MS. 

Getting drawn in

By 2012 I was unable to work and was using a wheelchair. But I was still able to attend the monthly drop-in sessions. And by 2014 I’d become one of the editors of our group’s newsletter, Nattermag. 

In November 2022, the current GC asked me to become a volunteer, which I happily agreed to. Everyone was happy to meet at my home when required, which made things easier. 

And the fact that I’m not on social media, or the most tech-savvy person, hasn’t prevented me from helping out. I’ve been able to make a difference whenever possible.

Since COVID, the group has gone from strength to strength due to our fantastic GC — helped by the other volunteers, like me. We’ve become a lovely community, with all the differences you’d expect us to have. And, in my experience, people living with MS haven’t lost their sense of humour, which is to be applauded. 

Catering for everyone

We run a very well attended exercise class every week. Our qualified instructor provides MS-specific sessions delivered at various levels of ability. Everyone can join in whether they’re using a wheelchair, walking aid or walking independently.

If our GC’s unavailable, I can happily ‘stand’ in to help with everything except the teaching. I’ve even been described as a ‘glamorous assistant’ for our seated newbies to watch and copy. That’s probably more flattering than I deserve. 

Our instructor’s very aware of what people living with MS have to deal with.  She’s recently shown us how to use a chair to get up after a fall, if otherwise unhurt. One of our attendees had to use this method in a supermarket recently.

It’s nice to know that, as well as being enjoyable, these classes can have real practical benefits.

Socialising in a welcoming environment

We also run a monthly coffee, cake and chat event for people living with MS, and their carers, friends and family. It’s a great chance to mix and socialise in a safe and welcoming environment. As well as being an avid reader I enjoy doing jigsaw puzzles — definitely a love it or hate it pastime!  

So I now run a ‘£1 puzzle pact’ at these events. People can take jigsaws from our collection for £1 each and bring them back after completion. This raises much needed funds and offers a great service for our group members. We host a lunch club afterwards, which is reasonably priced and also well attended.

Listening and sharing

As a Support Volunteer, I often speak to people who are reaching out for help for the first time. As I know how difficult this can be, I’m able to listen, empathise and offer practical support whenever possible. 

This includes offering to accompany a new person into any of our sessions, so they don’t feel nervous before they’ve had a chance to experience our very warm welcome. I’m happy to listen and talk to people about any aspect of living with MS — to help them feel more confident and comfortable with the situation they find themselves in. 

Finding my purpose

While I think I’ve had a positive impact on the people I’ve met and supported, my volunteering role has given much more back to me. I’ve rediscovered my purpose in life. I feel useful again. And in the process of being helpful I’ve become part of an extraordinarily wonderful second family. 

So, if you’re thinking about volunteering, please do give it a go. You could find it as rewarding as I have.