What I would most like people to understand is that it is possible to build a life around MS that is still full of contribution, purpose and connection, even while carrying challenges most people never see.
My MS diagnosis was in 2020. Leading up to it, there were many doctor and specialist appointments, and throughout that time I relied on my wife for support. Once I had an answer, we talked through the “what-ifs” and what our future might look like. To make sense of things, I researched MS using reputable information and websites, while trying to avoid “Dr Google”.
Since then, I have learnt to navigate life with MS one day at a time. My wife continues to be my biggest support, and together we’ve learnt to adjust, take each day as it comes, depending on what symptoms I’m experiencing. I’ve tried to be more flexible in my approach to day-to-day life and accept that some days will look different from others.
Outside of work, I am very aware of spending the energy I do have on what matters to me, including gardening, baking, exercise, camping and travelling. As MS is a progressive disease, I’m conscious of living life now while my health is still pretty good.
Managing MS
Having MS means I am constantly “assessing” my body and listening to how I feel. I try not to do too much and take rest breaks as needed.
My life is directly shaped by the availability of treatments that help keep MS from progressing. I’m very lucky to still be working part-time, although some days are harder than others when I’m battling fatigue and cognitive issues.
Many people don’t realise how much energy, planning, and self-management it takes to keep working with MS, especially when symptoms fluctuate day to day. MS can be isolating, especially when you appear to be “doing well”.
Living with MS in a regional community adds another layer to that experience. After raising a family, I am still working, volunteering and showing up for others – all while navigating a condition that is unpredictable, exhausting and often invisible.
Staying active
Part of looking after myself is staying active in ways that work for me. I am a big advocate for physical activity and enjoy walking, yoga and PT sessions. Exercise keeps me moving, helps manage pain and gets me outdoors.
I would encourage people to make the small lifestyle changes that can improve their overall health and wellbeing. Medications are wonderful and life-changing for people with MS, but there are so many things, alongside treatment, that can improve your life with MS.
My wellbeing is improved by my family, friends, and work colleagues, who are supportive, funny, and down to earth. My family and friends check in and ask how I’m going; I know their support is there when I need it.
As I’ve gotten older and wiser and navigated life’s curveballs, I’ve realised life isn’t about the big house or the grand car. It’s about how you live, being kind and respectful, understanding that everyone is going through something, and spending time with the people you love.
That understanding shapes how I try to live now, with a positive attitude, small acts of kindness and a commitment to giving back.
Being a part of the LEEP
The opportunity to be part of MS Australia’s Lived Experience Expert Panel (LEEP) has let me contribute to projects that can make a positive impact on the lives of people living with MS, including taking part in an episode of MS Australia’s Raw Nerve podcast, input into the “Living Well with MS” guide and feedback on the “Back on Track” MS nurses’ resource. I have been fortunate to meet some really wonderful people from around Australia and have valued connecting with other LEEP members.
In addition to volunteering as a LEEP member, I run the local MS Support Group. Sometimes all someone needs is a listening ear and an understanding heart. Over time, I have realised how passionate I am about human connection and social interaction, which is weird as I am quite an introvert and a real homebody.
For me, finding your support network is critical to living well with MS. That might be family, friends, a community group, work colleagues or support groups. Having people around you who understand what you are going through can help lighten the burden of MS.
