It was 1998. Kylie Scales was 25 and one week into a new job in IT, when she woke up to find she couldn’t see out of her left eye.
“I didn’t think much of it at the time,” the Canberra woman told Mamamia. “I just thought, ‘Oh, it’s probably conjunctivitis or an eye infection or something, so I went off to the doctor, who sent me straight to an ophthalmologist, who then sent me to a neurologist. By then I started realising this was a bit worse than an infection.”
After two days of testing and an MRI scan, Kylie finally received answers. She was in the early stages of Multiple Sclerosis.
“A million questions went through my head,” the 44-year-old said. “‘Why is this happening, what’s it going to do, will it ever go away, and how is this going to affect my life?’
“It was quite confronting and scary because I wasn’t sure what would happen. I wasn’t sure if I’d ever be able to see properly again.”
Multiple Sclerosis is an incurable condition in which the immune system mistakenly attacks and damages the fatty coating (myelin) around the nerves. This results in scarring that can block or impair the electrical messages between the brain and the body, and lead to a variety of different symptoms depending on where the damage occurs.
Kylie, for example, has experienced lesions on her spine, brain and brain stem. While she fights near-constant fatigue, she has a relapsing-remitting form the disease, which means the worst of her symptoms come and go in series of attacks that can last anywhere from a few days to six weeks.
"There are times when I'd pretty much be in remission and get on with life as normal and everything was fine, and then other times when all of a sudden I couldn't walk properly, my legs wouldn't coordinate. I'd be tripping over, bumping into things, I'd start losing sensation in my hands and feet and legs, I'd get pins and needles and numbness."
Most debilitating though has been the cognitive dysfunction. This is what ultimately forced Kylie to give up work as an IT project manager five years ago and accept a disability pension.
"It was really difficult to deal with," she said. "I'd be going to meetings and I couldn't remember my team members' names, I couldn't keep up with what I was managing or what project we were working on; I was losing focus and concentration all the time. The more I stressed about it, the worse it got.
"At that stage I had a young child, so I was juggling motherhood with work and battling a disease at the same time and it was all just getting on top of me."
Various forms of treatment have granted her periods of reprieve over the last two decades - the best of which lasted for more than six years following experimental surgery on her jugular vein. She's in the midst of another remission at the moment courtesy of a chemotherapy drug. And she's making the most of it.
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In April, Kylie will be running 10km as part of The Australian Running Festival. It's a challenge she hopes to complete every year, for as long as she is able.
"When I was diagnosed I didn't know if I'd be walking in five years time. I had no idea what was ahead of me," she said. "And I just thought, well, while I have this time I better use it to the absolute max. Because I don't want to look back later on and realise I wasted precious time that I was walking or could run. It is unpredictable like that."
Not previously an especially athletic person, Kylie began running for health reasons after the birth of her daughter. It was a birth that followed five concurrent miscarriages and ultimately occurred with the help of steroids, blood thinners and a host of medications. These drugs resulted in weight gain for Kylie, that she hoped to jog away.
Yet once she returned to her normal size, she soon discovered that running wasn't a means to achieve a goal, it was the goal.
"It would be too easy to give up and say, 'Well I can't run because I've got M.S.' But I like to challenge myself and I like to challenge my M.S.," she said. "There are times when I win that battle, and times when I don't. But I'll always give it a go; I never give up."
For the upcoming race, Kylie's husband will be running alongside her, making sure she is safe, making sure she's OK.
"He'll always be my support crew at those events, which is fantastic. Because it gives me a lot of confidence about going ahead with it. I know I'm not going to be feeling sick by myself somewhere on the side of the road," she said.
"If I push through and fall in a heap he's still there for me, even though he warned me [to take it easy]. He still leaves it to me to decide what I'm capable of, what I'm willing to risk. He doesn't stop me from living my life the way I want to.
According to MS Australia, Multiple Sclerosis is most commonly diagnosed between the ages of 20-40, and women are three times more likely to have it than men. Overall, it's estimated that roughly 23,000 Australians are currently living with the disease.
Kylie's aunty among them, her brother too. And now, the mother-of-one is concerned that her 12-year-old daughter, Jaida may join them.
"I'm not sure if it's just developmental changes with her (she has Asperger Syndrome), but there are some odd things going on with her health that I experienced as a child as well. She does get a lot of aches and pains and is very fatigued and lethargic for a kid her age. She tends to get a lot of dizziness," Kylie said.
While the exact cause of M.S. isn't known, a person's likelihood of developing the disease is slightly higher if a first-degree relative has experienced it. Still it's early days for Jaida, and she isn't presenting with any definite symptoms.
"For now we just monitor her and watch and wait and see what happens," Kylie said. "And just try to build her positivity and resilience and help her with her challenges as much as possible, so that if it does come to that, she knows she's got plenty of people in her court that will be there for her."
It's she who motivates Kylie to lace up her sneakers, to outrun her occasional moments of overwhelm or doubt.
"There are times when I'm really exhausted and I can't be the kind of mum I want to be, or the kind of wife or friend," Kylie said. "But I really do try hard to push past that and stay positive as a role model for my daughter. I like to show her that to have resilience and strength and positivity is a good way to live your life. Because everyone has their own problems; whinging about yours is not beneficial to you or anyone else. You just have to accept what you've got, do the best you can and move forward."
You can try and keep up with Kylie at The Australian Running Festival in Canberra on April 14-15. If you haven't trained, it's not too late - there are 5km and 10km fun-run races for those of us who are less, erm, athletically inclined. Enter before Mar 27 to save $10.
To follow Kylie on Instagram see @runningwithms