I never thought l would be writing this story about me, but l am hoping to bring more awareness to MS and to help raise money for a good cause. Ultimately, I hope that one day they find a cure, and by sharing my story it might help others out there realise that being diagnosed with MS doesn’t mean it’s the end of the world; nor does it define who you are!
In 2017 my amazing, brave Dad was diagnosed with pancreatic cancer. What followed this was a long and incredibly difficult year for him with surgeries and intense chemo. By November 2017 he was given the all clear, but by Christmas time (a month later) we got the news that it was back and had spread to his liver, giving him only a few months to live. Life was much like a rollercoaster at this stage. Growing up, my dad was my hero – the strongest man l knew. He would hold my hand tight when we were jumping waves in the beach or crossing a road, he was patient enough to teach me how to drive a manual (despite my complete lack of skills at the time) and he would be on the sidelines cheering me on most weekends when l played netball. All of this was taken away from me in the worst possible way. Seeing someone who l loved so dearly, and in so much pain every day and not being able to help, was the worst experience of my life.
In the last few months of his life, l spent lots of time travelling back and forth to him. l was stuck between needing to work a full-time job to continue to support myself and get through each day, to spending as much time as possible with him. In those last few months, without even realising, my body started affecting me in ways l never thought possible. For 3 months I suffered from constant headaches and migraines non-stop. No amount of pain medication would work, and the doctors l saw in Melbourne dismissed it as stress. I was at the point where it was affecting my everyday life, so whilst l was visiting my dad in Orange, l went to see his doctor – who is brilliant. She said it’s likely caused from stress given what l was dealing with, but to go get an MRI - just in case.
Back in Melbourne l went for my MRI. l was told it would take 15 minutes and l’d be ‘in and out’. Fear arose when l was in there for more than an hour and a half. I knew something was wrong when they put dye through me, and said they had to call my doctor. After an anxious 24 hours, my doctor phoned me at work and asked when l could come back to Orange. I couldn’t get there fast enough so I begged her to just tell me over the phone. At this point, l was expecting the worst – a brain tumour. But instead she said ‘have you ever heard of Multiple Sclerosis?’ l said l had, but didn’t know too much about it. Growing up, at school l took part in the MS read-a-thon, but other than that l didn’t have all too much knowledge about it. She explained to me that it was condition of the central nervous system, interfering with nerve impulses within the brain, spinal cord and optic nerves. My first response was, ‘will this kill me? ‘No’ she said. Next was, ‘Will l be one of those people in a wheelchair’? She said, no - although there is no cure. I was assured that MS has come a long way in the past 20 years and they are still working towards finding a cure, but there is a lot of treatment available that will help me to lead a happy and healthy life.
Following that came a lot of tears and feeling incredibly scared! I phoned my friend who was at work, she left immediately and came and picked me up (great friend to whom l am incredibly thankful for!)
Of course, the first thing l did was go to Google – which let’s be honest is our best friend at times, but it’s generally not the case when it comes to anything medical related. I searched everywhere for experiences from actual people, how they were after treatment, and what their life was like – but came up short, then again, maybe l just didn’t know where to look.
My next step was to urgently see a neurologist (one of the best in Orange) three weeks later. I spend a lot of this time struggling to deal with this diagnosis but kept in mind that it could be worse, and that it’s not what it used to be when l was younger – it’s come a long way. I was also incredibly lucky to have the most amazing friends and family around to support me, especially when it came to keeping this a secret from my mum and dad who were already dealing with so much.
Not long after, dad began getting a lot worse, and eventually he fell unconscious at which time we knew he only had days left. My mum - as mums do, grew very suspicious and knew something was wrong with me. I wasn’t myself, but then again none of us were. We weren’t sleeping, as we were doing shifts to sit with dad 24/7. Eventually l couldn’t lie to her any more so l told her what was going on. Needless to say she wasn’t very happy with me for keeping it from her (sorry mum). Despite going through the worst time in her life, everyone was there for me 100%.
Going through something as traumatic as seeing your dad slowly leave you was tough (it feels like an out of body experience), and as time went on, my body started reacting more and more as my stress levels rose. Little did l know that stress combined with a traumatic life experience can bring all of your MS symptoms to the surface. Sharp stabbing sensations like a knife started twisting in my heels, I had numbness in my hands, pins and needles all over my body, dizziness, trouble with my vision, fatigue, and the list goes on.
The day my dad passed away was absolutely the worst day of my entire life, and it was also the day of my neurologist appointment. I phoned them to say that my dad had just passed away and was there any way l could move my appointment to another day. l was told that unfortunately the neuro was going away on leave for 5 weeks tomorrow, so that was the only time l could go.
So with that said we told dad we would be right back and my beautiful sister (also known as my rock) took me to my appointment. We must have looked like a crazy mess in that waiting room that day. Full of emotions and tears, l remember thinking, this life is so cruel, and how will we ever survive this.
When l saw the neuro he confirmed that l had MS and l had lesions in both my brain and my spine. Not the news we wanted to hear! A barrage of information was given to my sister and l, we were trying to take it all in, together with the list of treatments l could choose from. At this stage all l heard was, ‘no wine and no cheese’. Obviously, that wasn’t the treatment option l was voting for! He also said he wouldn’t start treatment on me, unless l committed to moving to Orange for at least 6-12 months. My life was in Melbourne; my job, my friends, my home – l couldn’t do that, so l started the process of finding another neuro in Melbourne.
I was in luck! The head of the Neuro unit at Royal Melbourne took on my case – which l was told is a big deal. I went to see him a few weeks later, he was a little confused as all my scans and reports had told him that l should be in a wheelchair. To his surprise l looked perfectly healthy – apart from my headaches which still had not subsided. I remember him saying – yes you have MS but you are going to control it, not the other way around. To this day l remember this and thought absolutely - this is not something that’s going to take over my life, it can simply fit into it and l will deal with it as it comes. He was confident and clear in explaining what was to come and to this day l trust him 100%.
Following another traumatic day undergoing tests and a lumber puncture l was booked in for treatment. I chose to have Ocrevus – which was explained to me as the new kid on the block! It was very new so not a lot of research had been done on it, but it was working brilliantly all over the world (music to my ears!). So once every six months (until a cure is found) l go to hospital, get hooked up to a machine and for 6-7 hours l have steroids and this new wonder drug put into my system intravenously.
I’ve had 3 rounds so far, and it truly is a magic drug. It has halted my MS symptoms and l can honestly say that 90% of the time, l feel healthy, l go to the gym most mornings, and l don’t feel like l have MS (apart from living with constant fatigue) and even better, following each treatment my MS nurse encourages me to have a glass (or a bottle) of wine– so l think it’s a win-win.
So that is my story - long l know; but l truly hope that this gives hope to anyone who goes through something similar, it can be worse, but life is what you make it, and it does not define who you are. You really don’t know how strong you are, until it’s the only choice you have!
So with that said, l with a few friends (and anyone else who wants to jump on board), are going to take part in the 2019 Melbourne MS 10km walk!
I am raising money for MS in the hope that one day they find a cure! It’s incredible that 1 in 3 Australians know someone living with MS and the average age of diagnosis is just 30 years old, at least l made it to 32!
I would be incredibly grateful for any support you can offer!
Thank you in advance!