"MS has changed my path, but it hasn’t stopped me from finding joy, connection, and purpose"

Just before the Covid-19 lockdown, in 2020, I had what I thought was a migraine that wouldn’t go away. I'd had them before so I didn’t do anything about it. I was also getting stabbing pains in my eyes.

I was teaching the local Ranger Guides to knit ‘twiddle mitts’ to donate to dementia patients (to keep their hands and minds busy) when my right hand started tingling. I thought these were all things that would just go away but I woke up one morning and what had started with my hand had progressed down my right-hand side. The numbness and tingling were now something I could not ignore and I ended up in A and E.

In the months that followed I saw a number of different medical professionals, and underwent various tests. In August 2021, I went to what I thought was a regular neurology appointment. I was on my own, partly due to Covid-19 restrictions but also because I wasn’t expecting to receive a diagnosis that day. The neurologist ushered me into the consultation room and before he even sat down, he said: “So you’ve got MS.”

Complete and utter shock

I phoned my partner and my Mum from the hospital car park. When asked how it went by both of them, I just burst into tears. I think I was just in complete and utter shock. I was experiencing a different kind of numbness. I just sat there in the car, in tears.

The diagnosis was all I could think about. I couldn’t get my head around it far less than go into work. I couldn’t go in and be the normal version of me, dealing with my job, and have this going on inside my head: what am I doing, who should I speak to, what support should I get? Wait, what? I have MS.

I've grieved – and still do to some extent, the parts of me I feel I've lost and the life I imagined I would have. But I’ve also discovered a resilience and strength I never knew I had.

MS has taught me to adapt to life’s challenges and make tough, sometimes scary, choices that I know are right for me. I don’t imagine how my life is going to be now, I imagine how the next day is going to be.

At times, I've been in a dark place, wrestling with feelings of guilt, loneliness, and the sense that I’m not being understood or listened to. For me, living with MS means dealing with constant, invisible challenges, like fatigue and pain, that others can’t see.

There are days when I feel guilty. People look at me and say ‘you don’t look ill’.

I beat myself up mentally because when the really bad fatigue hits, and I know I need to stop, I make myself feel guilty for stopping.

It’s human nature to feel that you need to push through but in reality, you don’t need to.

The importance of support

It can feel overwhelming, but even in the darkest moments I've learned that I'm not alone. My family and friends have been so supportive, especially my partner and my son. And the MS Society has been there for me, helping me process my diagnosis, providing counselling, and giving me the opportunity to chat with other people who were also newly diagnosed with MS. Now, I will chat to anyone about it!

That's where the team at TD9 Radio come in. I'd been interviewed a few times. Originally, way back in their early days, about the Tweeddale Twiddle Mitt Project that I was doing with the Ranger Guides. And then a few times on the Tuesday Night Music Show about the twiddle mitts, YouTube, my podcast and to promote the 'Zipslide the Clyde' event I did to raise money for the MS Society.

Each time I appeared on air I was told: “You’re quite good at this, do you not fancy doing a show?” I always said no, and laughed it off. The third time I was asked, however, I learned that there was a slot available. I thought about it for a couple of days and then said: “Right, I’ll do it.” And now I have got a Saturday morning show called Rise and Shine with TD9.

It's really good fun and it's been wonderful for my mental health. Every week I have a goal – to write the show, produce and present it; we do everything ourselves. It’s also good because I’m thinking about things other than my MS – like song lyrics and the beauty of how a song sounds, and how I’m going to merge one into the other, or what I’m going to say in between the tracks.

I try to have positivity throughout the show. It's evolved now that I have a little ‘chicken nugget’ at the end of each show, which is always a positive thought. I already had a podcast before the radio show, which is about mental health and focuses on how we can destress, unwind, relax, recharge and be kinder to ourselves.

Speaking up to combat stigma

I strongly believe that if you don’t talk about MS, then the stigma of having MS won’t go. It's the same with mental health; if you don’t talk about it, people don’t learn about it.

My MS diagnosis has also made me more aware, be more in the present, and more appreciative of the things around me: birds feeding, sheep and horses in the fields, beautiful scenery. The scenery near me is amazing. There aren’t that many vehicles on my route to work so it’s just me and the surrounding countryside. Before my diagnosis I wouldn’t have ever said anything like that. I was far too busy doing rather than being.

The bad days come and they go. But every time I go through a bad day, I come out the other side. I’ve survived 100% of the bad days I've had so far.

Embrace each day

Life doesn’t always go the way we imagined, but that doesn’t mean it can’t still be meaningful, fulfilling, and even surprising. MS has changed my path, but it hasn’t stopped me from finding joy, connection, and purpose.

If anything, it's taught me to embrace each day as it comes – and to say yes to opportunities I might have once turned down.