Ballarat mum Hollie Fowler had just finished her nursing training when she started experiencing a tingling in her hand that came and went.
At first doctors thought it was a compressed nerve or something similar, but over weeks it progressed to affect more of her body until she was numb from the neck down and had lost partial sight in her left eye.
Investigations in to the loss of sight led to Ms Fowler having an MRI and being diagnosed with multiple sclerosis when she was just 26.
As the mother of an eight-year-old daughter, who coincidentally shares her birthday with World MS Day on Saturday, Ms Fowler knows how hard it is to juggle work and family life having MS symptoms such as fatigue, which stopped her working as a midwife.
She now leads the Ballarat MS Peer Support Group where she helps many young people newly diagnosed with MS via phone support and online forums.
Some people take many years before being diagnosed, but Ms Fowler had a diagnosis within four months.
Multiple sclerosis is a chronic, often disabling disease that randomly attacks the brain and spinal cord and there is no known cure. Symptoms range from mild pain and spasms to slowing of speech and severe loss of muscular control.
Three quarters of people diagnosed with the disease in Australia are women, and the average age of diagnosis is 20 to 40 years of age.
Huge thanks to @larryemdur & @kyliegillies for helping @RealTimFerguson to spread the word this @WorldMSDay!!! We at MSA are huge fans of the show and appreciate all your efforts to help raise awareness!#MS#multiplesclerosis#MSconnectionshttps://t.co/Rpxo3wBVxP— MS Australia (@MS_Australia) May 29, 2020
The disease occurs when the immune system attacks the myelin sheath that surrounds nerves in the brain, optic nerves and spinal cord.
For Ms Fowler it means she suffers greatly with fatigue, vertigo, motion sickness (without motion), heat intolerance, hot flushes, reduced sensation and memory loss as well as pins and needles that come and go.
It was four years after diagnosis that MS nurse John Matthews put her in touch with a local online support group that changed her life.
"The chat group is the one place that I'm normal ... because everyone is the same. Conversations range from what I did on the weekend to new drugs and symptoms ... it's just a place of feeling normal.
"I don't know whether everyone is like this with support groups or whether I just happened to get to really good lot of people ... but it had been probably four years since diagnosis and I had not had any support group before then."
With her nursing background Ms Fowler has become a spokesperson for Multiple Sclerosis Limited.
Stress can bring on life-hindering attacks of MS and Ms Fowler has relapsing remitting MS which means in most cases she will heal back close to where she was before an attack.
She has had to give up work and put herself and her family first - something she admits has been difficult.
"My doctor said to me do you have to work, but I feel I want to contribute to society - that's part of my mental wellbeing. He asked if I could find another way to contribute because he felt I was putting everything in to work and leaving nothing for me, my daughter and husband.
"You have to take a lot of self care and it's hard to put yourself first when you are a mum and you've got that people pleasing personality.
"MS is all about self care ... which is good because it's a hard thing."
And, with the stress of the coronavirus pandemic over recent months, she says the message of self care should be taken on board by everyone, not just those with MS.
"I think we all need a little more self care," she said.
For the next three years, the World MS Day theme is 'Connections', challenging the social barriers that can leave people affected by MS feeling lonely and apart from the community.
In 2017 a report prepared by the Menzies Institute for Medical Research found that, on average, the quality of life of people with MS in Australia a third lower than the overall population due to the impact of MS on pain, independent living, mental health, and relationships.
MS Limited chief executive John Blewonski said the COVID-19 pandemic had provided a range of online tools that helped people with MS connect virtually and live well.
"MS Limited is running an Instagram campaign using the hashtag #MSselfcare to help the MS community feel connected and supported in the lead-up to World MS Day.
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"We hope our social media campaign will encourage people living with MS to connect with one another and attract support from the broader community to celebrate the resilience of people living with MS.
MS Limited offers services and support to help people living with MS to have the best life they can, while the search for a cure continues.
"Living well with multiple sclerosis requires a range of strategies including fatigue management, stress management, good nutrition, exercise social and emotional support. With advanced options for therapy and care reducing the severity of disease progression and complications, people with MS are expected to live well for longer periods."
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