It was 18 months ago that Jacinta Goodear received a life altering diagnosis.
Hold tight - we’re checking permissions before loading more content
After two years of monitoring symptoms and regular MRI scans, the young mother was told she had multiple sclerosis - a disease that affects the central nervous system.
And while it sometimes makes even the most mundane daily tasks difficult for her, Jacinta is not letting her diagnosis get in her way.
She’s living life as normal, and she’s also committed to participating in the May 50K challenge this month.
She will walk 50km over the entire month to raise money for the Kiss Goodbye to MS charity.
While the feelings of anger, denial and sadness over her diagnosis still linger at times, Jacinta said more awareness around MS makes her feel better about living with it.
That is one the aims of MS charities, who also divert money raised to medical research and support programs.
“It’s not the disease it used to be,” Jacinta said.
“The treatments are a lot better and just because I have this diagnosis doesn’t mean I won’t be able to enjoy my life how I did before.”
Jacinta said while some days are difficult, she is still able to do most of the things she was able to do prior, and with the help of local physiotherapist Terri Bootsman she can hopefully get back to all the things she loves doing.
“I get very tired and fatigued, so sometimes I just need to spend the day on the couch.
“But most of the time I’m up and about at work, picking up the kids, staying active and doing all the things I did before,” she said.
Jacinta’s journey to diagnosis started almost four years ago, when she woke one Monday morning with a sensation “like cable ties around my ankles”.
“Every now and again it would feel like someone would pull on the cable ties, and I was getting pins and needles up to my waist,” she said.
“I thought I better go and see a doctor.”
Over the next two years there were multiple trips to Melbourne and Bendigo for routine scans and check ups, but no real diagnosis.
“I was told I had Transverse Myelitis (inflammation of the spinal cord). I had a lesion which touched both sides of my spinal cord.
“I was told by a neurologist she thought I could have MS, but she didn’t have the science to prove it.
“To be diagnosed with MS you need to have a lesion in your brain and spinal cord over different periods of time.
“I’m the type of person that needs a yes or no to move forward, so being in that grey area for so long was really frustrating.”
While receiving the MS diagnosis was a hard pill to swallow, Jacinta said there was also a sense of relief - she finally knew for sure.
“Everyone I had heard speak about MS said that you will be in a wheel chair, not be able to move around or walk, so I went through all those scary thoughts and feelings.
“I have a family, young kids, I want to be an active mum and live my life.
“But then there was acceptance - that’s where I’m at now.”
Jacinta still has to go to Melbourne every six months for regular check-ups to see a neurologist that specialises in MS, but she’s also got a great medical team in Deniliquin supporting her so she does not have to travel as often.
So far, she is responding very well to the treatment regime.
“My condition hasn’t changed which is great, so I guess I am responding well to treatment.
“But I tend to leave that stuff to the professionals.”
Jacinta said adjusting to her ‘new normal’ is made easier with her family’s support.
“I couldn’t do it without my family’s support, especially my husband Adam, for just listening to me every time I have a meltdown and knowing when I just need a weekend of doing nothing.
“My kids, Joshua and Isabella have adjusted so well. When I was first diagnosed I showed them a video to explain what was going on, but Isabella was so little at the time so she didn’t really understand, but Josh was a bit more perceptive.
“Whenever I have to go to Melbourne or Bendigo for treatment they will ask me ‘are you coming home mum?’ or ‘are you still going to pick us up from school?’.
“But they notice things; when I may not be having a great day they will ask me if I’m okay.”
Jacinta said her GP Ben James has also made the adjustment so much easier.
“Ben has really sorted my life out,” she said.
“He has helped every step of the way with treatment and ensuring that I can get my infusions here in Deni, so they get sent from St Vincent’s in Fitzroy to Deni Hospital and I just turn up.
“I feel so lucky that we have the trained nurses here in Deni to be able to administer this kind of treatment.”
Jacinta said now she has comes to terms with her diagnosis, she wants to help with the education process.
By sharing her story, she hopes to raise more awareness of MS.
“I guess the hardest thing for people to understand is that to look at I probably look fine,” she said.
“People look at you and don’t see a disability, but inside I am feeling weird sensations, I’m extremely fatigued or feeling nauseous from treatment.
“And it goes for all autoimmune diseases; you don’t know what is going on inside someone's body.
“This is also why it is so important to take notice of your body and listen to it, because I’m sure many people who might be feeling the same sensations may just ignore it and continue on with their day.”
On the fundraising front, Jacinta said the support from the community has already exceeded her expectations.
She originally set a goal to raise $500, which she reached within 24 hours of launching her fundraising campaign.
She is now at $2,691 and is hoping she will be able to reach her new goal of $5000 by the end of the month.
“I’ve been totally overwhelmed by the community, my friends and family’s support who have already donated,” she said.
To donate and follow Jacinta’s progress to 50km, head to www.themay50k.org/fundraisers/jacintagoodear.
Cadet Journalist