I had come to Melbourne on the 30th December to spend time with friends and celebrate the new year. It was new years eve, 1998 and I was not feeling very well. As the new year grew closer, I felt more and more sickly and had really bad cramps in my calves. I managed to stay out at the club we were at and see the new year in. I then drove some friends home and then went home myself with the cramps worsening. I had numerous bouts of sweats and feeling very sick.
The next day I started throwing up. I put it down to my boyfriends cooking and the cramps due to me overdoing it at the gym. We did not know what to do for someone who was throwing up continually and rang his mum who recommended I eat fruit. That stayed down for a while and so I was happy with that. However shortly after, the cramps continued and the vomiting persisted. I was not happy as a couple of friends and I had planned to go on a picnic. I never did make it to that picnic.
That night , I kept trying to walk to get the cramps to ease up. I noticed that I had a bruise on my leg when I went to take a cold bath. Later again I noticed I had more bruising. I was putting it down to me being clumsy. As it came into the early hours on the 2nd of January and I was still not feeling better, was actually feeling worse my friend informed me that if I could not sleep he was going to take me to the hospital and even if I could sleep he was going to get his brother to take me to the doctors the next day.
When, even after his threat I could not lay still, bearing what he considered to my high threshold of pain and my unusual complaining he insisted we go to the hospital. I was not happy and we persisted to argue about going to the hospital, thankfully he won. When I was in the car, I could not wait to get there.
Upon arrival I was hobbling towards the casualty, he tried to get me a wheel chair yet, I was “no, I CAN walk”. However a nurse saw this and came out and got me in the wheel chair and rushed me straight through to a doctor. It was amazing how quickly it was all happening.
My, what I thought to be bruises and what I now know to be a rash had spread. They informed me what they thought I had and I had no idea what they were talking about, meningococcal and to be honest, I did not care, I simply wanted them to give me what ever I needed to be better so that I could go and get on with my holiday. Even when I was in intensive care with my legs rotting all I wanted to do was get out and get on with my holiday.
Monash hospital staff told me they needed the number of my next of kin. I argued with them saying that I did not want to give it to them as I did not want them to worry my mother. I kept telling them not to worry, I will be fine. My friend persisted and got the details. My poor mum got the horrifying phone call that she had better get on the next plane. They rushed me through to intensive care and commenced my treatment. It was all fascinating.
They conducted a number of fasciotomy’s and not long after I was put into a ward. I ended up with a below knee amputation with a grafted stump which was very cool as it meant that I was able to keep my knee, without the surgeons taking a gamble and grafting it, I would have ended up with an above knee amputation, making prosthetics that little more difficult. I had 2 x grafts from one of my thighs and one side of my bottom, I had to have a before and after if I could.
Over the next 6 months I watched my toes on my remaining foot slowly drop off and all the scabs of my arms. The surgeons wanted to operate on my arms and foot but thankfully I listened to my instincts and only let them fiddle with my foot and my arms are great. I was fortunate enough to be put into contact with Grace Warren an incredibly big hearted and talented surgeon who operated on my foot. I still have problems with my foot but it is still there and allows me the choice of which leg is better, when I need to use crutches. I now live a “normal” existence, I don’t know if there is such a thing as really normal but the one I have is a happy one.
How I have got to where I am is with my determination, the constant belief that it will be right and most importantly my incredibly wonderful circle of friends and family’s continual support and love. Knowing that you have great people who are there when you need them is all I need to keep my spirits up. I have to do some things differently and sometimes have had to begrudgingly slow up a little. I however still try to water ski and ride my horse, go swimming. I still have a great life. Pain is always a part of my life and is at times frustrating. I have got to meet some amazing, wonderful people. I constantly get to meet people who remain so upbeat even in their adversity, they still remain such strong, fun and good spirited people.
My story is not only about meningococcal, it is about the journey that the disease has sent me on. The journey of being able to better empathise with people. About learning the HUGE difference a good and bad doctor can make, about the difference in peoples attitude and how this can affect your life. I once had a person come up to me in a shopping centre and go oh yuk how come you don’t cover them up, (in regards to the scars on my arms) what happened! As my very witty girlfriend said, you should say oh yuk, what happened to your head, why don’t you cover that up.
I do hope this story in some way may help someone, know what the warning signs of meningococcal are and very importantly I urge you to support the violet foundation and their efforts to better educate our community. To know what the warning signs are and react to these may save yours or your child or your friends life.