“I’m the original FOMO,” says Margaret Gelfi. “I’m not on social media because if I find out what everyone else is doing, I want to do it!”
Margaret was diagnosed with MS in 1999. She was 29 and she and husband, Greg, were living in Melbourne. Margaret was suffering from optic neuritis, but didn’t have a GP in Melbourne and put off going to get it checked out. However, when she lost sight in one eye, she booked an appointment and was sent for further tests. Her sight soon got better and Margaret carried on working. Then, the results from the neurologist came in, and with them a diagnosis of relapsing-remitting MS.
Looking back over the five years prior, she realised that the episodes of fatigue, depression and tingling in her fingertips were symptoms of MS.
“It was a relief,” recalls Margaret. “For so long, I’d been trying to keep up with people my age by concentrating on a healthy lifestyle – but it didn’t work. I thought, ‘At least I’ve got something to focus on’.”
In those pre-internet days, Margaret went straight to the library and the medical literature she found was outdated and terrifying. The only example of someone in her orbit living with MS was a friend’s mum, who was very immobile.
“I thought, ‘I can’t do that. I’m not strong enough to be that person’.”
Shortly after the diagnosis, her husband’s work took them to Finland, a country with high MS rates. Margaret spent a lot of time researching and reading.
“It allowed me to get my head around it.”
Fast forward to twenty years later, and Margaret and Greg live in Perth with their two teenage children. Margaret still has few MS symptoms, mainly low iron, fatigue and some scarring from the optic neuritis.
“Physically, my toes are a bit numb, but I still get around in high heels,” laughs Margaret.
Around nine years ago, she had a debilitating vertigo episode related to MS, and ended up in hospital, right before the whole family were about to jet off on holiday to the USA.
When she had recovered, they did end up taking the holiday, travelling to California, Disneyland, New York, Arizona, the Grand Canyon and then to Las Vegas, where ‘Elvis’ renewed Margaret and Greg’s vows in celebration of their 20th wedding anniversary.
“It just about killed me, but if I plan something I don’t cancel,” jokes Margaret.
Margaret reflects that the setback led her to adapt her lifestyle to minimise the risk of relapse.
“We do lead a quiet life compared to other people. I don’t want to push myself too hard. Since the vertigo attack, my philosophy is: don’t plan anything. I’ll say ‘I’m good today, so let’s go do it’. If I plan something, then I guarantee I’ll struggle. And, as I said, I hate to cancel.
“We’re a close knit family, we like doing stuff together. I’m that annoying mum who sees things advertised and says ‘come on, let’s go’. We went to the MSWA Sensation Gallery at the start of the year. We loved it.”
When Margaret is feeling energetic, they also enjoy going to movies and concerts. A highlight on the calendar is Open House Perth, a two-day festival that gives behind-the-scenes access to Perth’s best places and spaces.
Margaret works as a greeting card merchandiser for John Sands. It’s flexible, which is important for the days she suffers with fatigue.
“Some days I can’t move very fast but I get the job done at my own pace.”
Treatment-wise, Margaret has been on Fingolimod for nearly a decade.
“I’m grateful for good doctors and the right medication,” says Margaret. “When I changed medication, the nurses from MSWA came out to show me how to inject. I’m no longer having injections, and Fingolimod has been a fantastic daily tablet with no side effects.”
“I’ve been very, very fortunate. I remember in 1999 thinking ‘Where am I going to be when I’m 50? Kids? Wheelchair? Working?’ If this was going to be my path then I’ve been very blessed.”
Margaret has been a member of MSWA since 2009.
“MSWA is my safety blanket. I know you’re there. It’s especially reassuring for my husband.”
She describes her hopes for the future as continuing to lead a normal ‘boring’ life, seeing her daughter and son follow their dreams, celebrate milestones, weddings, grandkids.
They love to travel as a family, most recently embarking on a six-day road trip to Eucla with 16 other family members.
“We’ve travelled the world, especially when Greg and I were living overseas after my diagnosis. It was life changing. It was how I learnt that MS didn’t need to define me or prevent me from enjoying life.”
Margaret reflects that her own MS journey has made her more understanding of others.
“Most people have something going on. And quite often it isn’t visible.
“I admire the strength of people that have it a lot tougher than me.
“If something started to change for me now, I’m grateful that I’ve had a really good life and been able to do everything I wanted to do, at my own pace.”