My running story is a multi faceted story. I am a runner, I am a Mum and I also happen to have Multiple Sclerosis (MS).
During my school years I found any and every excuse to ditch PE. I was never a sporty or athletic girl. As I was always a slim build I didn’t care if I was unfit. I figured you only needed to exercise to lose weight so I never bothered.
When I was 25 I was diagnosed with MS. To be diagnosed with an incurable disease at the prime of my life was frightening and confronting. I did my best to approach it with a positive attitude and carry on with life.
As my health declined I turned to caffeinated soft drinks for a quick energy boost but was way too exhausted to do any vigorous exercise or anything too energetic.
I was having MS relapses or flare ups about once every six months and my symptoms were worsening each time.
A couple of years after I was diagnosed my husband and I decided we wanted to try to fall pregnant. We fell pregnant almost instantly but unfortunately we had a miscarriage. This was the first of several recurrent miscarriages, five in total.
Finally when I was 31 I fell pregnant with a baby girl. This pregnancy was only successful due to me taking steroids, blood thinners and a heap of other interventions throughout the pregnancy.
To add to the stress of this high risk pregnancy my Dad was diagnosed with cancer. At this point I was taking 25 tablets and having two injections per day to maintain the pregnancy and six weeks before her due date, our baby daughter Jaida was born.
Jaida was a big premature baby weighing 2.6kg and was as healthy as a full term baby. After three weeks in hospital growing and learning to feed she was able to come home. Everyone was so relieved and excited to welcome this much wanted baby into our family. I was finally a Mum!
My Dad was as proud as punch with his long awaited, miracle baby granddaughter!
After all the steroids and medications I was on during the pregnancy I had quite a bit of weight to lose. After always being a slim person I was not comfortable with the extra weight and decided to try to see if I could run to lose the weight.
At first running 500 metres was almost impossible but I kept on trying. Each time I’d just get to running a couple of kilometres consistently I would have another MS relapse and have to stop running. By the time I’d take it up again I would have to start from scratch. This was pretty frustrating and I never seemed to progress. This went on for quite a few years!
When my daughter was about 3 I had the worst year with my MS and had recurring relapses, about 6 in one year, where I temporarily lost my mobility. I used a walking stick, my vision was impaired, I had cognitive dysfunction, numbness and pins and needles in most of my body and ice pick headaches that would see me hospitalised and on morphine to get on top of them. Running once again stopped.
When my daughter was nearly 5 I embarked on a new and experimental procedure (CCSVI) to improve blood flow between my brain and heart by widening my jugular veins in my neck which were found to be severely narrowed.
Three weeks after this procedure my Dad sadly passed away. I was devastated…
A highly emotional and stressful event like this would usually cause a massive relapse but my MS remained stable. It was like a bitter sweet miracle!
I decided that if the stability in my health stayed I would attempt to take up running again and not waste another moment of my legs working properly! This was my second chance and I wasn’t going to waste it.
I started by using the C25K app and gradually worked my way up to 5km running. It took me twice as long as it was supposed to but I had finally completed it! The fact I ran any distance at all after everything my body and mind had gone through just made me want it more. I had been bitten by the running bug!
I have been running on and off (MS likes to interrupt) ever since and developed a huge love for running.
The procedure on my veins had given me over 6 amazing years relapse free and I was now a runner!
In December 2015 I was hit with a massive relapse that caused a lot of new lesions on my brain, spine and brain stem. By now I was pretty fit and still managed the odd run here and there even though I was very unwell. This relapse went on for quite a few months and caused a lot of damage.
In May 2016 I changed my entire diet to the “Overcoming MS” diet and completely cut out meat, dairy and saturated fat. No soft drinks, no junk food just good clean eating!
My Neurologist suggested a new treatment using a chemotherapy drug called Lemtrada. In August 2016 I spent five consecutive days in hospital hooked up to an IV getting chemotherapy. Due to my immune system being destroyed by the treatment, I had to stay quarantined at home for a few weeks so as not to catch anything.
After about 4 weeks I went to my local park run to see how I’d go. I ran it in 33 minutes which I was pretty pleased with. I was back in action!
Now ten months since changing my diet and six months post Lemtrada treatment, I have managed a Park run PB of 27:54 and a 10km PB of 1:00:02. I am hoping for a sub 60 min 10km PB at the Australian Running Festival in April!
I am feeling fitter and healthier than I ever have in my life and have recently introduced my now 11 year old daughter and my husband to Park run which they are enjoying too.
MS still pays me a visit now and then and my immune system is still quite compromised. It will take a couple of years for my body to rebuild itself but so far things are looking pretty promising.
Even though it is highly frustrating that my running is so often interrupted by my health issues, I am eternally grateful that I still achieve the things I do after almost 20 years with MS and my determination is stronger than ever.
To say I’ve had my ups and downs is quite an understatement. The wisdom and patience I have gained because of these experiences have fuelled a strength and determination in me that I didn’t know previously existed. The one thing that had remained consistent is that I never give up. I will keep “Running with MS” for as long as my body can do it…
Feel free to follow Kylie on Instagram @runningwithms