When were you diagnosed with MS? March 2003
What type of MS do you have? Secondary Progressive MS (SPMS)
#1: Can you tell us a little about your journey with MS. How did you feel about your initial diagnosis and how it has affected your life?
In 1998, when I was pregnant with twins, I was told by my ophthalmologist that I had optic neuritis and that I most likely had MS. As a nurse, I recognized some of the symptoms I had experienced over the past two years, and I knew that I had it. My paternal cousin had just been diagnosed with MS, and the news was devastating to me. I grieved and I cried, because, I was worried about how I would be able to bring two newborns into the world while battling MS throughout their lives. A year later, I experienced numbness on my left side, which extended from my neck to my knee. After visiting a neurologist and completing some simple tests, he told me that I either had a brain tumor, spinal cancer, or MS. It took months to get an MRI done, and finally after 8 months, I was diagnosed with RRMS, which was a relief to me because I knew that I would be able to see my children grow up despite the challenges that lay ahead.
For 22 years, MS did not significantly impact my life. I worked as a nurse while raising our four children with my firefighter husband. I also participated in triathlons and long-distance bike events of 100km or more. However, in 2020, I was diagnosed with melanoma, a type of skin cancer. Soon after, my MS became more active, and I was diagnosed with SPMS. As a result, I am now in a wheelchair and I have major MS symptoms. Nevertheless, I work full-time in hospital administration, and thanks to NDIS funding, I have a recumbent e-assist trike that provides me with freedom, fun, and exercise. I participate in MS events and raise funds for MS Australia with my trike. Despite my MS diagnosis, I am determined to live my life to the fullest.
#2: What MS symptoms do you have and how do you manage them on a daily basis?
I experience numbness in my left hand and foot, a droopy eyelid in my left eye, and blurred vision in both eyes. Additionally, I have swallowing problems, urinary retention, and vertigo. I also suffer from an itch that won't stop, migraines, balance and mobility issues, tremors (especially in my legs and hands), word-finding difficulties, memory issues, and slurred speech. I also experience muscle cramps, MS hugs, and foot drop in my right foot. My coordination is impaired, and I fall over frequently, resulting in bruises. I feel weak, and I have a lack of sensation in terms of sexual issues. Finally, I struggle with heat and cold intolerance. But most of all, I suffer from extreme FATIGUE, FATIGUE, FATIGUE.
#3: Who/What has been your most important support system?
My husband has been by my side on this journey and is a great source of support. My children are all grown up and have been an amazing source of support too. I also have NDIS, which provides me with cleaners, a gardener, and support workers who are available to help me with anything I need. These services are funded by the government in Australia. Additionally, NDIS funds my physiotherapy, exercise physiotherapy, mobility aids, speech therapy, podiatry, and any other services that I may require.
#4: Do you use any accessories like canes, walkers, or wheelchairs to manage daily activities?
When I go out of the house, I use a power wheelchair for mobility. On days when I feel particularly good, or when I need to get to a place that is not accessible by wheelchair, I use a gutter walker. I have been using the walker for two years, while the power chair has only been in use for six months.
#5: How do you stay positive and motivated in your daily life? What do you do for self-care?
I make a conscious effort to be kind to myself, and if I am going through a difficult period, I confide in my friends and family, who are always there to support me. On days when I feel good, I make the most of every moment. I try to live my life as if every minute is valuable and precious. I am grateful to be alive and make it a point to treat everyone I meet with kindness.
#6: Your story and experiences with MS are incredibly valuable and can provide encouragement and motivation to others in the community. What words of advice or encouragement would you give to someone who is newly diagnosed with MS or going through a challenging time right now?
Live your life to the fullest! We all only have a limited time here on earth, value each day. If you can walk...walk. If you can run...run. MS may have your body, but it doesn't have your soul. Be kind and love life!
#7: Have you started a business or mission related to MS? Can you tell us about it and what inspired you to take this step?
I have an Instagram page @ms_sux_so_much. I am trying to be an advocate for people with disabilities in my "patch"...at work, in my neighborhood, community, and town.
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