Susan Hyde

My unforeseen journey

My first symptoms of MS began in April 1995. I was 35 years old with three young children at school, doing my dream job in the Police Force and training for a triathlon. I began dropping plates whilst doing the dishes and dropping my wallet and keys. Before long, my right leg began dragging along the ground, at which point I decided it was time to go to the Doctor. 

My GP immediately referred me to a Neurologist, who in turn ordered an MRI, looking for a stroke. Within three months I was advised I had relapsing-remitting multiple sclerosis (RRMS), a disease I had never heard of and knew nothing about.  Without Google I drew information from wherever I could. My local GP filled me with three days’ worth of IV steroids and connected me with others in my hometown who also had the same diagnosis. 

A small group of seven, including partners, met monthly for a potluck dinner at each other’s homes. I was not concerned about the diagnosis due to a lack of education and ignorance. I continued working and having annual IV steroids for several years after diagnosis. In between times I still ran and cycled, but due to increasing limb weakness and fatigue, never did complete a triathlon. After searching the family histories for both my parents, we could not find a link to MS.

Things went smoothly with the steroids until 2015, when Secondary Progressive MS took hold. I could no longer climb the five steps into my home or walk the 200 or so meters to my workplace, which at this time was as a Prison Officer here in Western Australia (WA), where I had immigrated to from New Zealand in 2012. 

Over the years I have studied and learned a lot about all forms of MS. I now work closely with others living with MS through a Peer Support group which I run in WA. I see a neurologist six-monthly and have two yearly MRI’s.  Employment was very difficult for me once I stopped walking unaided. I presumed that a Government Department would have been more empathetic and/or sympathetic towards my MS but instead made life so difficult that I left. 

I have since had difficulty obtaining a Disability Support Pension as I am ‘too mobile’, because I don’t need help transferring.  My main problem now is that when there is any change in any body function, I am unsure whether it is my age, 63, or my MS. I continue to keep participating in as many trials as I can and follow various sites and blogs from around the world. 

Susan Hyde is part of the MS Australia National Advocates Program, which promotes the active involvement of people living with MS and carers of people living with MS in the MS Australia advocacy agenda. Read more about Susan’s experience here.

World MS Day, acknowledged on May 30, is a day that fosters global unity and optimism. The 2024-2025 theme ‘Diagnosis’ and ‘My MS Diagnosis’ campaign, advocates for timely and accurate identification of multiple sclerosis (MS). The campaign shares real experiences and urges improved healthcare professional training, research, and clinical progress for MS diagnosis.

World MS Day is an opportunity to share stories, like this one, raise awareness and campaign with everyone affected by MS. #MyMSDiagnosis.