I clearly remember the moment the neurologist uttered the words sorry you have MS. My immediate reaction was to hold my mums hand and tell her that everything is going to be ok. I didn’t really cry I was just upset for my mum that she had to see her daughter struggle. I vowed from that moment to always stay positive because I don’t want to see my mum in pain. I soon realised that having this mentality is a lot more difficult to practice when faced with needing to inject yourself and feeling like you’ve been hit by a truck constantly. However over the years I have learnt exactly what works for me to keep me happy and counting my blessings. For now I will take you back to before I was diagnosed. I was 19 years old in my second year of University, studying a Bachelor of Professional Communications at Monash when my health began to decline. It started with an innocent migraine and a dizzy spell then quickly turned into tingling and full blown numbness through the right side of my face. For a long time the doctors kept telling us it was from the migraines and the numbness was because I have three slipped discs in my spine. However my mum demanded an MRI and the rest is history; I was now a proud owner of the MS label. This year is the first time I have chosen to share my story because for a long time I pretended that there was nothing wrong with me and would hide it from everyone. Although for me this method of coping worked for a while I soon realised I was hiding a huge part of what has made me and shaped me into the woman I am today from the tender 19 year old I was when diagnosed. I could write a novel of my experiences but I will tell you two moments of impact for me, the moments that kicked my ass into survival mode and the moments and people I will cherish forever because no diagnosis is dealt with without a herd of support.
Moment of impact 1 – the day I sat in the neurologists office with the MS nurse being taught how to inject myself. WOW how this has left an aching imprint on my brain. I remember exactly what I was wearing – black Gstar jeans that my boyfriend, now husband bought me, a Kookai black long sleeve top and a pair of black flats. I also had very long black hair; I could have been mistaken for a modern day Morticia. My mum and my middle sister were sitting either side of me and the nurse and neurologist sat in front of me so gently explaining how to load the needle into the gun and that the button would trigger the needle. I proceeded to put the injection together and sat; jeans at my knees with what I like to call gun of hell on my thigh and my finger on the trigger. We sat and waited and sat and waited all eyes on me to pull this trigger but all I could do was cry. The first time since diagnosis I cried. I am a little bit of a control freak and this was the first time I realised I’m not in control anymore, I don’t know what to expect and can’t anticipate the pain of the needle, the pain of the disease, the pain of leaving my teens behind me and becoming a grown up. That day I went home and cried myself to sleep but I woke up and said Jesus if I don’t stop crying I’m going to get the worst wrinkles ever!!!!! Hell no, MS can make me sick but not make me age prematurely too. I joke, there were many more tears after this and injecting was 3 years of pure hell for me, I dreaded every injecting day that rolled around. I became obsessed with me and my injecting demons; I went from being able to do it myself to my mum having to pull the trigger because the pain and welts got so bad. I started running out of room on my legs, bum and arms all while trying to hide my disease from everyone. My neurologist after 3 years of pure hell decided that it’s better to change my medication rather than me battle on like I was, so as soon as Gilenya came out I started taking the tablets and my life was good again. The side effects of Gilenya were pretty bad for 6 months but after 6 months I was always on a high because I only had to swallow a tablet. That was until my moment of impact number 2 – my first bad attack. It was my final year of university and my best friend, my mum was diagnosed with bowel cancer. I was at my boyfriend’s house when I received the call and I remember feeling like my whole world was crumbling, my body folded under me and I fell to the floor. I could be sick and I could get through it but not my mum, my mum was not allowed to be sick. I’d never known anyone close to me to have cancer before and the only stories I’d heard were whoever got cancer died and that was not an option for us. We have a close family and we are all glued together by mum. My university and work commitments faded into the background until we got mum cured of cancer; there was absolutely no other option. During this process the stress of final uni assessments and the worry that I might lose my mum saw me have my first attack. I remember waiting in the hospital waiting room during mums surgery pacing the hospital halls when I randomly dropped to the floor. My initial thought was ‘well that’s weird, how embarrassing’ and let it go. That night I got tingling in my leg and soon realised I’d run myself down so much I was having an attack and went in for my first methylprednisolone treatment. Well a few months later mums cancer was removed, I was feeling better after my treatment and I graduated from my degree with honours. I was super proud of myself and learnt that through the worst of lifes challenges I still managed to come out the other end, a little scathed and wounded but a little stronger and definitely on top. I have gone on to have many more attacks, lost reflex in my left arm, battle daily with fatigue and feeling like I have been hit by a truck and some of the worst brain fog ever. The difference now is every time I have an attack I come out a little bit stronger and wiser. I have accepted the cards I have been dealt, I am proud of what I have achieved while having a neurological disease and call on many people to help because I know I can’t do it alone. My family and husband support me whole heartedly, they jump in when I can’t cook or get out of bed, they build me up and love me. I work full time as a Communications Consultant at a big 4 bank. The MS Society have provided me with help that I could not live without and could not continue working fulltime without this help. They have provided me with a cleaner; a myotherapist and monthly check ins to keep me sane. Until last year I had never used the resources available to me so I want people to know that there is amazing help and support out there for people living with MS. I want to raise awareness that people may look ‘fine’ or ‘normal’ on the outside but you never know what they may be struggling with so don’t judge and don’t make assumptions. And I want people to know that through pain, struggle and adversity with a good mindset and strong support system you can be OK. Even when you get scared, which I do often, scared of the unknown that is MS, scared one day my leg will be like my arm and I will need to be in a wheelchair, scared to have children because how will I care for them when I feel like death all the time. I allow myself to have these moments and to be scared but then think about all the good and think about ways that I can help myself avoid what I am scared of. I have MS it does not have me and every time it knocks me down, I will always get back up and fight. Fight for me, for my parents, my husband, my family, fight to help raise funds to find a cure and raise awareness of this invisible disease that is crippling so many people.