Last year for the MS Walk Run + Roll, Lisa raised a fantastic $6,413 in her first year participating to make sure no one faces MS alone.
Lisa signed up to get awareness out in her local community. She lives in a regional area and wanted to challenge the assumptions that people have about people with multiple sclerosis.
“People have preconceptions around multiple sclerosis, usually around wheelchairs. I wanted to show them that people can look well and have MS,” Lisa says.
“I’m in a rural community. Sometimes, it can be very hard as some of our doctors don’t have in-depth knowledge about MS. It is getting better over time though.”
Just 20 when she was diagnosed, Lisa had only heard of multiple sclerosis through the MS Readathon – she took part in primary school.
Lisa was moving out of home for the first time into a share house and feeling excited about the new chapter ahead. She felt unwell the day of the move and decided to stay an extra night at her parent’s house.
“The next morning, I woke up to a very dark room. I thought the clock must have been wrong as I stood out of bed still feeling awful."
"I realised that it was my eyes and I couldn’t see properly. I remember screaming for my mum to come quick. I was rushed to the emergency department with the thought of stroke or brain aneurismal going through our minds as I was 80% blind in both eyes.”
After many visits to doctors and specialists, Lisa was offered a suite of tests, including an MRI, CT scan and spinal tap. Some results took up to six weeks to receive.
“I was sent home to wait and recover. Still blind, I found out how hard simple things could be. I wasn’t able to drive, watch TV, cook or even finding matching socks. I couldn’t read labels or see colours, and I had lost my balance and coordination due to the inflammation in my brain.”
“I remember walking down the street with Mum one day to go have coffee, just to get out of the house. The short walk from the crossing to the café felt like I was walking on a cloud. I remember grabbing onto a wall and saying to Mum, ‘Take me home. I can’t do this.’”
Lisa’s results came back and she was diagnosed with multiple sclerosis. Treatment began and eventually her vision recovered.
“Being just 20 years old at the time, I naturally started googling. It was not a good decision, as it was all worst-case scenario information. I was the first in my family and friends to have MS, so no one knew what to expect.”
“From there, I’ve had numerous treatments and lots of relapses. I haven’t got a lot of physical damage – I have some 15% vision loss in my right eye and peripheral visual disturbance, which I’m used to now, over time. I get numbness on the right side of my body, affected more so than the left."
While Lisa doesn’t have symptoms that would be obvious to a stranger on the street, multiple sclerosis affects her every day.
For Lisa, extreme temperatures and stressful circumstances can trigger a debilitating flare up. Following a death of a loved one, Lisa ended up in emergency.
“A stressful event means I’ll end up collapsing with nerve pain throughout my body and unable to walk.”
Her most recent relapse was March last year – undoubtedly a stressful time for many people. For Lisa, this underlying stress teamed with a high-stakes day at work was a combination that brought on a quick relapse.
Lisa collapsed at the office.
Day to day, Lisa’s learned to adapt her life to manage MS symptoms and reduce these relapse triggers. For example, heading to bed at 8:30pm each night helps keep the fatigue from escalating to an unmanageable amount. Lisa says she’s learned to live with being tired all the time – it’s her normal. And, as stress can trigger relapse for Lisa, she also experiences apprehension around tense situations and conflicts.
“I suffer some anxiety if I’m getting stressed because I know I need withdraw myself from stress that’s happening in the room, because I’ll get to a point where my body will take on the stress and I’ll get sick. I’ve learned coping mechanisms to step away and not take on the stress. It’s especially important because flare ups are always different – you never know what you’re in for. Not one person is the same. Not every flare up is the same.”
“With each relapse you never quite get back to where you were before.”
Adjusting to the new lifestyle can involve a period of adjustment and sometimes feelings of loss for people with multiple sclerosis.
“I was physically active and fit. I used to be a personal trainer. So, it’s taken a long time for me to accept that my body can’t keep up anymore. It’s difficult having to come to terms with the fact I’m not going to be able to run marathons anymore.”
Help in the darkest moments
During her darkest moment, Lisa reached out to MS Connect – our free helpline for people with MS, their families and carers (made possible by generous and caring people like you, our fundraisers).
“It was during a relapse when I reached out to MS Connect as I was feeling depressed. When I’m in the middle of a relapse and it’s active, I can’t escape the pain or the symptoms. A flare up could mean I don’t have feeling in certain parts of my body, and I’m not sure if it’s here to stay or will recover.”
Lisa felt grateful she had somewhere to turn at the time, and shares her life with people who understand.
“It’s the unknown that’s so frightening. The people at MS Connect understand what you’re going through.”
“I’m lucky to have such amazing family and friends who support me and allow me to use my voice to promote MS not as negative but let me use it as a positive. I don’t want MS to rule my life, it’s about adapting to the challenge.”
For our fundraisers (that’s YOU!), Lisa has a message:
“Thank you for creating that awareness. You’re helping the people that have MS to know they aren’t alone. I always say, ‘Yes, I’ve got it, but it doesn’t have me.’”