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Claire Prophet and her husband with their two sons between them.

Taking inspiration from my mum for our family

Claire Prophet from Dundee, Scotland, talks about taking inspiration from her own late mum, who also had MS. And finding different ways to make memories with her family.

When I was diagnosed with MS my first thoughts were for my two young children. Could I still be a good mum while living with a long-term health condition? Would they miss out on activities their friends enjoyed?

"You… have… multiple… sclerosis." Those words echoed around and around in my head. I zoned out from the neurologist sitting in front of me and thoughts quickly turned to my two beautiful boys. They were only four and nine years old at the time. How could I be a mum that has MS? How CAN I be a mum that has MS? Somehow the past couple of years made sense. I wasn’t just imagining things. It had been tough for a reason.

My thoughts then turned to my fabulous late mum, who'd had it tough with MS. She'd often say: “I may have MS, but MS doesn’t have me!” She showed so much strength and hardly ever let it get her down. Then, (through the cog fog) I had a light bulb moment. I realised that all I have to do is be the kind of mum my mum was to me. One that made me feel loved and happy.

MS won’t change who I am

Maybe I can’t be a carbon copy of the mum I was before, but I won’t let having MS change who I am. After all they don’t need me to be a perfect parent. All they need is one that’s good enough! It just needs a little bit of creativity. Maybe I won’t be the mum to win the skipping race on sports day, but I can be the mum who designs the leavers’ hoodies for my son and his classmates. I just need to pace myself and know that it may take longer than it used to.

Since then, I often spend time looking for ideas of things to do with my boys, who are now seven and 13 – anything to get them off screens for a bit (although YouTube has come in handy for ideas). In the past, we've managed to find step-by-step instructions to carry out science experiments - who knew volcanoes could erupt in Scotland in 2023?!

Sometimes, when sensory overload is just too much, we'll spend time colouring in together. Or we'll all go out with my husband to have a car picnic by the sea (on days that it's far too cold to even step outside – good old Scottish weather!) Some days, when my spoons are running low, I just have to admit defeat and cosy up under a blanket, or go back to bed. But… wait a minute… my youngest loves ‘jammie days’ with movies and snacks. So, cosying up and watching a movie is what we do.

Read more about Spoon Theory and chronic conditions

My oldest son has found a passion and talent for cooking and baking: move over Paul Hollywood! He's very happy pottering around in the kitchen, which often results in some tasty treats for us to sample. The handy thing is, he can now use these skills to make the tea to help out sometimes, he’s a super Young Carer. 

One thing that's been a little bit trickier to think about is how we can be active as a family.

Adapting our activities

We visited MS Society Scotland’s ‘Connecting Our MS Community’ event in Stirling a few months ago. Here, we discovered a fantastic programme where we can all hire specially built and adapted bikes. So now I can take my boys on bike rides. I never thought I’d be able to even consider that again. We plan to hire the bikes and have a family adventure during the next school holidays and we can’t wait!

Visit the Bike Without Barriers website

Explaining MS to my seven-year-old has been tricky. He often finds it hard to understand why I can’t do the same things as some of the other mums. I spent time talking this through with a counsellor, who helped me stop feeling so guilty and use my creative side to think about ways of explaining things to my son. I came up with the concept of an MS monster that gets in my way sometimes and makes things tricky.

The five-armed monster!

My son and I have talked about what he looks like – an enormous fluffy, stripy monster that apparently has five arms! We try to laugh about the cheeky MS monster that's tickling me when I have strange feelings in my body. Or how the MS monster’s holding onto my leg so tightly that it's making me wobble over. It helps him to understand the things that are a bit tough for me, without sounding too scary or serious.

I don’t know what the future has in store for me, but neither does anyone, really. While I'm able to, I'll continue to be as much of a creative, daft and loving mum that I can be. And continue creating memories with my family, just like my mum did with me.