Charlie’s cycling comeback: finding a way back on the bike after MS

Charlie discovered she had MS in 2010, however she suspects that the seeds of this condition were sown much earlier, as far back as 2004. At the time, she was deeply engaged in her passion for cycling, training a team for her third MS bike tour event.

“I really liked the experience,” she recalls. “It was fundraising for a really good cause, but honestly, I just loved cycling.”

Charlie's journey with MS began subtly. While working at a call centre, she experienced sudden hearing loss, akin to “turning a TV way down low.” Alongside this, she had vision symptoms that prompted a visit to the emergency department.

“By the time I got there, the symptoms had disappeared. The doctor gave me a list of possibilities, including early onset MS.”

It wasn’t until she experienced severe vertigo in 2010 that she received her official diagnosis. Her reaction was mixed.

“I was mostly annoyed,” she admits. “The neurologist made a joke about it, saying it was funny that I was the MS bike team captain and now I had MS.”

For years, Charlie remained largely ignorant of the disease's implications, experiencing minimal symptoms and primarily balance issues.

“I didn’t tell anyone but one friend and my partner. I think I preferred it that way; I wanted to avoid unhelpful suggestions.”

Navigating life with MS

Although unable to ride herself while recovering from the vertigo, Charlie supported the other riders by following along in her ute, patching tires and providing snacks and encouragement.

“I cried when they all crossed the finish line, having put 90km behind them and raising over $1,500 for MS research.”

However, as time passed, fatigue became a significant challenge for Charlie.

“I never considered that until I took the FACET (fatigue management) course. I realised I hadn’t been doing most of the things I used to do.

“My partner pointed out that I had stopped volunteering in the community since my diagnosis.”

The fatigue was compounded by stress, particularly during her PhD studies.

“I remember thinking, ‘I am way too stressed; this is going to have an impact on my MS,’ but I pushed through.”

“The FACETS course has been so good for me. I am so aware, I don’t have as much mental fatigue in the mornings so that’s when I do my work. I knew that I would have an energy lag in the afternoons and now I can just use that to my advantage.

“I sometimes have to stop myself from continuing to work during the afternoon as I’ll just feel worse for the rest of the day. It’s just not worth me pushing through for the amount of work I will get done.

“I found FACETS immensely helpful I would strongly recommend it to anyone who suffers from fatigue. It was great to talk to others with MS. There’s a lot of interaction during the course, which I found great.

In 2023, Charlie began experiencing weakness and lack of stamina in her left leg, which drastically altered her ability to hike — a beloved activity.

“I used to love going on long hikes and camping, but now we don’t go as much,” she says.

“After 10 to 15 minutes of walking, my left leg starts to hyperextend, which changes my gait and tires me out much faster.”

Finding support and adjustments

Despite these challenges, Charlie has found ways to adapt. With the help of a supportive community, including the MS Plus Employment Support Service and the Working with MS Peer Support Group, she learned about the disability support legislation in Australia and requested to switch to part-time study.

“There was some pushback, but they eventually agreed,” Charlie says.

“It has been so much better for me. I don’t have as much mental fatigue in the mornings, so I can do my work then.”

Charlie emphasises the importance of community and support.

“I think to my own detriment I isolated myself by not telling anyone I had MS. I also didn’t know what help was out there. There is a marked difference between Canada and Australia in terms of MS resources; I feel so much more supported by the health services here. My neurologist in Canada would run the same sort of tests at each appointment and then send me on my way but here it is much more holistic.”

Getting back on her bike

Through her journey, Charlie has learned valuable lessons about self-compassion.

“It’s a slow process, and I’m still learning,” she says. She also encourages others newly diagnosed with MS to reach out for help.

“Get in touch with MS Plus. I was scared and stayed ignorant about what help was available. The people at MS Plus are so approachable, helpful, and kind.”

Looking ahead, Charlie is excited about her future. She is looking to get back into cycling with a modified bike.

After a colleague mentioned he rode an electric tricycle to work, Charlie realised she might be able to ride again — and one day even rejoin the fundraising rides.

‘I didn't know such bikes existed at the time, but I remember thinking, "That's a bike I could ride! And as a bonus, it would boost me along the many hills of my city!" I was sold.’

“I recently received an MS Go for Gold Scholarship to get a trike, and I was able to test one out,” she shares.

“There’s still going to be a learning curve, but it has been so impactful. I would encourage anyone to apply for the scholarship.”

Charlie says it’s important to understand that no two people with MS are the same.

“If you know one person with MS, then you know one person with MS,” she says. “It’s very individual in how it manifests.

“People should be able to set boundaries about how much they want to share.”