January 2006 was when my world was turned upside down. On New Year’s Eve I had experienced blurry vision, and a massive mood swing. On New Year’s Day my leg started to feel “weird”. The next day the GP said it was just a “bit of fluid!” Well when I couldn’t walk that night mum said we better go to the hospital and I will never forget the words of the ER Dr.

“You need to have an MRI tomorrow and we will be looking for a brain tumor or MS…”    OMG WHAT!!!!

I was hoping for MS as that couldn’t be as bad a brain tumor, right? Then other thoughts consumed me…. And my main concern was I would end up in a wheelchair, not able to drive or do to much, completely dependent on my partner, if Joseph would even still want stay with me now. And then lastly if I had any, I would not be able to look after my own kids. The reason for this was the only other person I knew with MS was a lady whom was exactly as described and as my family were foster carers we looked after her children every 2nd weekend because her and her husband needed a break and couldn’t!!!

Well after two attempts at a lumbar puncture I was confirmed to have MS. Looking back I had probably had this debilitating disease since I was in year 11 and 17 years old, when I had glandular fever and chronic fatigue and in turn I was never the really the same since. I suffer from vertigo, massive fatigue, heat sensitivity/intolerance, pain in my leg, arms and tingling/numbness in my hands and feet, memory loss, blurry vision, poor cognition and loss of strength.

Two years with a few of hospital stints, nasty IV steroids and being treated with Avonex, (a disease modifying drug (DMD)) my MS seemed stable, but I still had to give up dancing as i didn’t have the strength. I really didn’t enjoy Avonex, it gave me flu like symptoms and would wipe me out from Thursday evening to approximately Saturday afternoon or even all weekend. I had to have a nurse come out every week to administer this awful intramuscular injection so when it was time to go on my honeymoon I stopped the Avonex so I didn’t have to do it myself. That was it I didn’t recommence it again as we tried to start our family and this medication or any MS medication is not good for the unborn child. The next 18 months was hard on my body whilst we tried and the fatigue and pains continued but fortunately no relapses. Being pregnant and breastfeeding for the next 5 years was wonderful for me. I had never felt better and my MS appeared to be at bay.

After finishing feeding Dominic in August 2013 I had made an appointment to see my neurologist and after being told it would be December, I went to my GP to get a referral to someone new. I didn’t think I should wait that long to see about what I should be doing medication wise.  Well that new appointment was scheduled for 9 April 2014, so December didn’t seem that bad after all. But little did I know, I was about to to have my biggest and most severe attack yet!!!

I woke on Tuesday 24 September and knew that something wasn’t right, my walking was weaker and I didn’t feel great. I was having a relapse, confirmed by the 5 cent piece size lesion on my MRI. So off the the hospital we went and I was admitted for a dose of IV steroids. I had noticed a drastic reduction in hand writing, walking and balance but convinced the physio that I would be better of at home with my family. I spent the next 10 days deteriorating to the point that I was practically paralyzed down my entire right hand side from head to toes! I needed help with pretty much everything – getting dressed, preparation of foods, getting in the car, brushing my hair, going to the toilet and showering. I could not hold my children, I couldnt sleep, and needed to be cared for 24/7. I used a walking frame, wore an ankle strap to prevent me from continually rolling my ankle. I could not open my hand, have any control over my arm and I was hypersensitive and couldnt stand to be touched! It was like I had had a stroke! I ordered another MRI to see if there was something else going on and on the 10th of October it revealed a massive 4cm round tumeffactive lesion on my brain.  No wonder I was so disabled! I was put on Tysabri which is a largely effective drug which comes with serious side effects including PML or death! This cant be good for our bodies! but for now it appears to be working.

Luckily my type of MS, Relapasing Remitting means I should recover from this last attack but the fact it was so large it is more than likely to leave some residual disability and 6 months on I am probably 80% better. I still walk with a limp and a bit of foot drop. I am achy, tired and weak. I cant not operate fast anymore, my last two fingers are restricted and I struggle to manage a full day at work. I will not be able to play hockey anymore or run.

They say the longer the disease goes on the worse the attacks become and more disability you acquire. Hopefully this is all about to be a thing of the past and I cant put a stop to the MS as I take a leap for a better life without MS!!!!