A talented singer whose world was the stage feared her love of performing was lost forever when a particularly bad multiple sclerosis (MS) relapse left her unable to stand.
When Carrie Robinson experienced two episodes of optic neuritis – which occurs when swelling damages the optic nerve that transmits visual information from the eye to the brain – it was the first sign that she had the neurological condition, MS.
With other symptoms, including pain and numbness down one side of her body, balance issues and pain in her hips and back, Carrie was diagnosed with relapsing remitting MS in 2018.
She feared her new mobility issues would mean the end of her performing – a dispiriting prospect that took a toll on her mental health. But then she discovered the MS Warrior programme.
Carrie, who works from home as part of a social work team dealing with child protection, explained: “The main thing I do in my spare time is sing.
“My husband Scott and I have bands and we perform at functions.
“We would think nothing of standing up and singing in front of a lot of people.
“Up until 2020, I still did all of those things but a series of bad relapses totally knocked me for six. It coincided with lockdown so a lot of activities weren’t happening anyway.
“My relapses got really bad and I was struggling with walking. I couldn’t really stand up and I knew I wasn’t going to be able to stand on stage and perform.
“That affected my mental health because I knew lockdown wasn’t going to be forever and we’d all go back to normal at some point and do the things we did before.
“On my mind was ‘I don’t think I’m going to be able to do this ever again.’ That’s a huge thing to come to terms with when it’s played such a big part in your life.”
Carrie, 52, started looking around for support and came across MS Society Scotland’s wellbeing hub, which offers information and online services and sessions to help people with MS manage their mental and physical health and wellbeing.
Initially, Carrie received free physiotherapy sessions via the wellbeing hub, and she started to regain some of her strength.
Then, she received an email inviting her to a launch event for the latest 12-week MS Warrior Training Programme.
Run by Disability Training in collaboration with MS Society Scotland, MS Warrior aims to increase fitness and strength, and minimise the progression of the condition, through tailored exercise and healthy eating.
Carrie, of Terregles, Dumfries, said: “I was a bit unsure because I didn’t know if I would be up to doing the exercises. At that point, in January 2021, walking was about my limit, and even my walking wasn’t very good.
“But at the launch, everyone was so enthusiastic.
“There were people there who’d previously done the programme and they said so many reassuring and positive things about it.
“So I tried and actually, from day one, I never looked back. It was absolutely brilliant.
“I’m glad I never let the doubt stop me from taking part because it really was the beginning of getting back to the ‘old me’ again.
“With MS Warrior you get a lot of emotional support. You get daily emails, you get to touch base with a buddy if you want to do that, you’re part of a group where people can share their experiences of how they’re coping with it.
“You can basically do as much or as little as you can do. It also addressed questions people had, such as if I’m experiencing fatigue should I carry on or miss a day.
“For me, it wasn’t just about getting fitter or getting stronger.
“After a while, I realised that actually I can be in control of my condition, and my condition doesn’t have to control me. It gave me optimism for the first time.
“I’ve got the confidence back to do things that I enjoy again.
“So, I’m back singing and I’m back standing up in front of an audience with a band. I’m doing all these things that at one point I thought I would never be able to do again.
“MS Warrior really was a huge thing, not just for my physical health but for my mental health as well.”
For more information, and to sign up for the health and fitness programme that is designed for people who have a disability, send an email by Friday May 19 to wellbeingscotland@mssociety.org.uk
Meanwhile, the next MS Warrior programme begins on Monday, May 22.
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