Living with MS for 7 years
Amanda received her MS diagnosis when she was just 25 years old. Before receiving this news, Amanda had undergone two years of medical investigation. She experienced chronic fatigue and a ‘electric shock like feeling from my brain down my spine.’ Amanda’s first relapse happened when she was just 23 losing complete vision in her right eye for a short period of time.
“I honestly thought I was going crazy, all these weird things happening to my body that no one could explain.”
After receiving the news, Amanda was overwhelmed with emotion. She drove out to a lookout and sobbed to herself- not knowing how to process the information. In that moment, Amanda decided to document the incredible sunset at the lookout.
“I will look back and see how far I had come from the helpless 25-year-old who’s life plans and hopes had been pulled out from underneath her. “
This was the beginning of Amanda’s art journey.
Amanda’s diagnosis definitely impacted her life, forcing her to leave her fast-paced human resource planning role. However, it also gave her the opportunity to pursue her true passion, art. Amanda believes that if she hadn’t been diagnosed with MS, she would have never been able to study art- an opportunity to she is so thankful for.
MS Queensland has been with Amanda since the very first day. Since her diagnosis, MS Queensland have been able to provide Amanda with phone support, neurologist information, MS nurse services as well as accessing seminars and workshops.
“People with MS in Queensland are so fortunate to have an organisation as MS Queensland supporting them through their entire journey with Multiple Sclerosis and I am very happy to be raising money and giving back to them so they can continue their excellent work.”
One important thing Amanda learnt about Multiple Sclerosis is that there is no right or wrong way of dealing with diagnosis. There is only your way, and no one should tell you how to heal, everyone in the early diagnosis years needs to know that what they are doing to deal with the news is perfectly fine. We all heal in our own unique way.
Living with MS for 5 years
My name is Karen, I am married to a wonderful husband and I also have a lovely daughter.
I was diagnosed with MS (Relapsing-Remitting MS (RRMS)) in 2013. I have had symptoms of MS for 10 years or longer, but they were not consistent which led to a delayed diagnosis. It was difficult to comprehend what was happening to me at the time, it was affecting me, of course, but also my family. This was a very stressful time for everyone.
Following my diagnosis, I turned to MS Queensland. The information I was given gave me a little more control of my life. Since that time, I have started being more conscious of my weight, diet and exercise. I have also been using support services, including, counselling and physiotherapy from the MS Queensland teams, whom I have found invaluable throughout this journey.
About 3 years ago we moved from Melbourne to Queensland. Whilst trying to manage my MS, last year, I was also diagnosed with breast cancer. After surgery and radiation treatment I am thankfully now in the all clear, however the illness caused a relapse in my MS.
One of the things that has helped me a lot is swimming, not just for exercise but as a stress relief. I started aqua-aerobics almost 2 years ago with a fantastic group of ladies. This has helped me with my confidence in the pool.
Living with MS for 13 years
Kate was diagnosed with MS in 2006, when she was just 18 years old, having experienced symptoms since she was 15. Kate experienced months of chronic dizziness, vertigo and balance issues before her diagnosis. In years before, she had even experienced vision issues and numbness in her hand and leg. The incidents were temporary and happened at different times- making it very hard to connect the symptoms.
“I did my best to stay rational and not catastrophise, but despite my neurologist's assurances I couldn’t help thinking of wheelchairs and nursing homes when I’d barely started uni.”
Today, Kate is passionate about MS awareness and communicating how the diagnosis is not the end for a young person- life can still be amazing.
Kate says that her MS hasn’t stopped her from doing things- she just has to adjust how she does things. She loves staying active; enjoying yoga, short hikes and even getting back into playing squash.
“More than anything, I want to tell young people diagnosed with MS that this disease is not the end of their stories. Life may be challenging at times, but it is still every part as exciting and amazing, and dreams are still very much achievable - just sometimes in a slightly different way.”
Kate finished her Uni degree in 2011 and has been enjoying her full-time work as an IT professional since. She is also an involved member of her MS community and MS Queensland has been with Kate on her journey since the early days.
” The incredible staff have been involved in so many aspects of my life; helping me to access health and education programs, providing medication training, assisting me on my NDIS journey, and assisting with establishment of our local young people’s support group.”
For Kate, the MS Swimathon is a great day in the pool celebrating community and friendship whilst raising funds for an incredibly important cause.
Living with MS for 14 years
Rachel was diagnosed with MS in 2006, just before graduating from high school. Rachel mysteriously went almost completely blind one day.
An emergency medical flight to Brisbane and a multitude of tests later, was has told she had MS.
For her, Rachel says that her MS is a daily battle between what she wants to do and what she is able to do. She faces new challenges every day and is actively working to overcome these hurdles.
Despite facing such a daunting diagnosis so young, Rachel has embraced her condition and is now helping others to live positively with MS.
In 2013, Rachel has played a crucial role helping MS Queensland establish the 12-hour Rockhampton MS Swimathon, and has been one of our highest fundraisers through the event, raising over $14,500!
“Being an MS Ambassador is very important to me as I feel Central Queensland needs to know more about the effects of MS. It also enables me to be able to present specific regional needs for the Rockhampton area back to MS Queensland to enable service improvements.”
Rachel says gaining funding and raising awareness are the two vital components to improving the lives of people living with MS.
Living with MS for 23 years
Kellie was diagnosed with multiple sclerosis (MS) in 1998, at just 29 years of age. However, Kellie can remember struggling with fatigue in hot showers from the age of just 15. Now, she can pinpoint this fatigue as a symptom of her MS.
Before receiving her official diagnosis, Kellie experienced several symptoms including severe fatigue, balance issues and a loss of her sense of smell.
A rollercoaster of emotions followed her diagnosis.
“In some ways relief followed by feelings of fear for not just my future but that of my husband and children. Them having to care for me was never part of the deal.”
Kellie’s balance issues, poor cognitive function and overwhelming fatigue forced her to give up running her own business and prioritise her focus on her health.
“The relief was that I had an answer to what was happening, but my business was our main source of income and now I was not able to keep up. I had gone from 6 days a week managing a business and household to barely being able to find the energy to shower.”
“MS does change a lot of things but looking back it gave me something that I have been able to pass on to my children and that’s perseverance and determination to keep moving forwards no matter how small the task or success.”
As a local resident of the Sunshine Coast and a member of the MS Queensland team, Kellie first joined us at the pool in 2015 and has taken part with several teams over the years. Kellie’s passion and dedication to the cause is both personal and professional, with a strong believe that “we can, and we will”
As she gets ready to dive in again at her local MS Swimathon, Kellie is passionate about creating awareness within the community- for the community and ensuring that no one faces MS alone.
For Kellie, her next swim is all about “celebrating” the amazing work that MS Queensland has accomplished with the support of the Sunny Coast community, including the opening of the Sunshine Coast Wellbeing Centre, the introduction of wellness programs, the employment services and specialist accommodation, all accessible within the community.