Adding some fun to make things a bit better

It was back in 2012 when I first got involved with the Fife Group. I met the Group Coordinator at a local support group and they persuaded me to join the Coordinating Team because I was “younger and energetic”. I was Volunteer Coordinator (a role which no longer exists) for the group until 2018, when the Group Coordinator stepped down and everyone voted for me to take over!

I quickly discovered that the group was sitting on quite a lot of money, so my priority was to put this to good use for the local MS community.

I want to make life better for people. Because MS sucks. It sucks big time, and you can get yourself in a very dark place with MS. But if you can put things in place so people can have a bit of fun, it just helps to make things a little bit better.

Giving young carers time out

There are loads of young carers who care for their parents who’ve got MS — like my kids have done for me. They’ve missed out on so much. When you speak to them they say that just being able to go somewhere close to home and have a break would really help.  

Cinema is a great form of escapism for them. You can forget everything and go into the film. That’s how the cinema passes came about. We thought it would give them a little bit of time out. And they can take a friend. Also, money can be so tight, because a lot of people with MS are on benefits, and the cinema costs a fortune now! I’m pleased we managed to get a reduction on the passes from Odeon.

Going burlesque!

There are lots of chair exercise classes available to people living with MS. But the classes I’d taken part in felt like they were targeted towards older people.

There was a display of burlesque chair dancing at my village hall one day so I spoke to them and that’s how we ended up doing classes at our group. The instructor is really good at arranging and adapting the moves so it still looks really good but we’re able to do everything. It’s exercise. You’re stretching and you’re moving. And it’s so much fun! It makes you feel that you’re not disabled.

Enjoying the beach

We provided funding for a new beach wheelchair at St Andrews West Sands Beach. St Andrews Beach Wheelchairs, supported by The Hamish Foundation, has a range of beach-friendly wheelchairs that can be borrowed for free to enable everyone to get down on the beach.

That’s one thing I hadn’t been able to do for years — walk on the beach, on the sand. It was heart breaking. I watched a young mum use one of the beach wheelchairs to go onto the sand with her children. It was beautiful just watching the glee on their faces because their mum was on the sand with them and could go down to the water. We thought this was an important thing to be part of.

Sharing my lived experience

As well as finding new and fun ways to support the local MS community, I’m passionate about increasing awareness and understanding of MS.

I think my volunteering highlight is developing my MS kit. It’s is a series of items that help to show the kind of issues someone with MS is likely to experience.

I’ve got weights that go on the arms and legs to simulate fatigue. I’ve got gloves, which represent the reduced sensation. And I’ve got goggles, which replicate the experience of having optic neuritis. I used to work with young offenders and these are proper, medically graded ‘beer goggles’ that simulate what it’s like when you’re drunk.

Of course, everyone’s MS is different, and I could only really base it on my own symptoms. But I’ve spoken to other people with MS and they’ve all said it’s really accurate.

I put the kit on people and then I get them to perform tasks. Like pouring water from a kettle into a cup, or pretending to shave or dry their hair. They find it so difficult. I’ve used the kit with medical students, and some doctors have even tried it on. I even got a local MSP to use it. He wore it for an hour and went shopping with it on! I gave him a shopping list, which he couldn’t read properly because of the goggles.

I’ll be taking the kit to the Social Security Scotland offices in March, as part of the MS Society’s campaigning to scrap the PIP 20 metre rule. It’ll give the disability assessors a real idea of what it can be like to live with MS. It’s quite hard to know what any condition is like unless you’ve got it. I hope we can make a difference. I do love my kit!

Definitely do it!

When I heard that I was a finalist for one of the MS Society’s Impact Awards I didn’t believe it at first. I was shocked and quite taken aback. It’s nice to get a bit of recognition, but at the end of the day that’s not why I do it. And I didn’t do all this on my own, but with the other Fife Group volunteers. It really is a team effort.

To anyone who’s thinking about volunteering, I’d say definitely do it! There are loads of different roles and you can do as much or as little as you like. It’s very rewarding. It’s brilliant to see the change you can actually make to someone. Just a small act can make their life so much better.