One of my most vivid memories that comes to mind on the 21st of January every year, is of me sliding down the stairs at my Mum's home, on my bottom, and laughing all the way.
On January 21st 2010 I was staying with Mum as I'd sold my house and was looking for land where I could build my new home. I woke up at about 5.30 am as I wanted to go to the toilet, but my body just wasn't moving the way it should have been. I tried to sit up and couldn't. I tried to move my legs off the bed so I could stand, and couldn't. I had been unwell for the 3 days before and hadn't thought much of it, until now.
I had started getting ill in 2004 and been through years of no diagnosis, gone through many terrible episodes of being very ill and in hospitals for months. I was finally diagnosed as having MS and had been, and was being pumped full of drugs and even 6 months. I'd even had 6 months of chemotherapy. Later it turned out to be the wrong drugs as I’d been misdiagnosed and had a very disease called NMO (Neuromyelitis Optica). It's far too long to write here however if you're interested, read the section called MY STORY.
I called out to Mum to ask her to help me out of bed to go to the toilet. She came through to my room, looking very worried. We tried all kinds of things to get my body to stand up but to no avail. I then started to worry as my bladder was about to burstl, and I really needed to go to the loo. Something was clearly very, very wrong. Luckily I am great during a crisis as my brain goes into solution mode immediately to try to find the best solution for the next step to take. My neurologist was away on holiday, and his instructions were always to go to the Royal Melbourne Hospital if I needed help. I decided that was what I needed to do. We called emergency and organised for the ambulance to transfer me to the hospital. They were there in no time at all, 3 of them, upstairs next to my bed with me in my T shirt and undies, and Mum. The problem was that my room was on the 1st floor of a double story house, and they are unable to get their bed up the stairs. The problem was getting me down the end of the stairs where they could then transfer me onto it.
While we had been waiting for them I had been working out all the options on how to get off the bed, down the stairs, and all the what if's. We all started to talk about it and I came up with a suggestion. My right leg could still bend and move a little, my upper body was ok, it was just my left leg that wasn't working and my bladder (that I knew of). So, they helped me to slide off the bed onto the floor. I then slid along the floor on my bottom by pushing with my arms and pulling with my right leg. When I got to the top of the stairs 2 ambos went in front of me and 1 was behind me. It was like being on a bumpy slide, I just bounced my way down the stairs laughing. I was worried but I find that if I don't let the fear in, then all that is left is to find solutions and laugh.
Little did I know that was the beginning of one of the most terrible times of my life for the next 2 years, and would change my life, forever.
As a child, I used to crawl on my bottom and did so for 2 years, that's right, I didn't walk until I was 2. It's amazing how we learn life skills that one day we may use in our lives, and what makes me laugh about this day, is that very thought.
I'm very proud of all that I accomplish daily not only living as a paraplegic, but with the terrible and trying symptoms this terrible disease causes. I am amazed I haven't topped myself, although there are many down days that challenge me.. I am very grateful for "happy" pills, and most of all to my wonderful Mum who has not only become my best friend, but remains to be such a loving, caring and my number 1 supporter, and unpaid carer every day, 24 hours a day.
I worked out recently when I updated my application for all the care and help I really need in order to apply for assistance, that Mum should be paid, just for that, $105,000.00 per annum.
Thanks Mum, Love you very, very much xx.
In a wheelchair permanently since early 2010 due to a disease called NMO. I am loving getting out and about in my wheels. My blogs capture my journey.