Life with MS

 
At 25 years old, I was running my own start-up business. I was a hard worker, but also partied hard. I was putting in about 70 work hours a week, drinking heavily in my spare time, and pretty much living on junk food. I weighed more than 100kg (about 220 pounds) and was generally unfit and unhealthy.

My symptoms started in early 2004 with stabbing pins-and-needles-type headaches and a constant ache behind my right eye. I had slightly blurred vision in my right eye, but never really took too much notice of it. I guess with such long hours and late nights I assumed it was due to tiredness.

This went on for several months. I didn’t confide in anyone at the time, as I just hoped one day it would all stop. Then one day I remember walking along the street and suddenly the sharp, stabbing pain behind my right eye was unbearable. That was the first time I acknowledged something could be seriously wrong.

That evening I visited a doctor who examined my right eye and observed significant lack of pupil dilation. He immediately referred me to Auckland hospital. I remember the exact words he scribbled on the specialist referral note: “Optic Neuritis, MRI?”

I had an appointment the next day, but couldn’t wait that long for answers. I went home and immediately googled the words he had written. All signs pointed to multiple sclerosis. As you can imagine, I barely slept a wink that night.

I was extremely anxious throughout my hospital appointment. Doctors ran various tests. A specialist noted the optic nerve was very inflamed.

“Is it multiple sclerosis?” I asked.

The doctor appeared very calm as he replied, “It may be, but whatever the case, we have to get the swelling of the nerves down immediately to avoid potential blindness.” I was immediately put on methylprednisilone for a week, to help try to bring the swelling down.

Within three days I was sent in for an MRI. I remember lying inside the machine and looking through a small window on the side. I could see several doctors standing around, looking quite sad. One was frowning and shaking his head. I knew at that moment it was confirmed – I had multiple sclerosis.

My family was devastated, and everyone else felt “sorry” for me. At just 25, I battled depression and thoughts of being wheelchair-bound within months. I felt like my whole life as I knew it was gone. I felt lost, lonely, and held little hope for my future.

I immediately shut down my business. I just didn’t feel I could cope with the demands of it any longer. As much as I was struggling – both physically and emotionally – I knew I still had to work to pay the bills. So after about three months, I took up a role at a finance company. It was predominantly phone-based, which suited me as I didn’t feel like dealing face-to-face with people at the time. 

While still trying to mentally come to terms with my diagnosis, my physical symptoms started to increase by the day. Lethargy kicked in. I gradually lost my ability to walk straight, as I was losing general feelings in my arms and legs. My arms started curling up to the point I could no longer write with my right hand. I had to train myself to become left-handed for many day-to-day activities.

It was a constant mind and body battle throughout the first 12 months after my diagnosis. Then one day, I decided that enough was enough. I was no longer going to just sit back and let this disease take over my life. I needed to gain back control in any way I could.

I started with my diet. I vowed to give up the junk food and instead stocked up on healthy fruits, vegetables and lean meats. I also bought a treadmill, setting a goal to regain control of my limbs. In the beginning I held onto the side rails, focusing on one step at a time to retrain my legs and urge myself to walk steadily again.

I took it one day at a time. With each day of improvement I felt great satisfaction, and setting goals gave me real purpose again. After several months I could let go of the rails. Then I started to walk faster, and eventually could even run! 

Each day I worked hard. After about 12 months, I lost 40 kg (88 lbs.) and had a whole new lease on life. I was walking steadily, the tingling and numbness had stopped, my arms were no longer curling. I was physically and mentally functioning again. I was back to the person I was before the diagnosis. And from there, I vowed to never look back!

Sure, it hasn’t always been smooth sailing. MS can attack different parts of your body at any time. At one stage, due to muscle wastage, I got down to just 62 kg (137 lbs.) and looked drawn and weak. But I maintained my positive outlook and pushed myself to regain my strength. Eventually I got back up to 80 kg (176 lbs.) and looked and felt fitter, stronger and healthier than ever.

Bouncing back from the worst of my symptoms, I was determined to work my way up the corporate ladder. My health was good, work was going well, I was socializing again. Life was once again enjoyable.

After 10 years working at the same company, I decided I needed a change. I left my job and sat back and had a good think about my life, and where I wanted to go from there. MS was such a huge part of my life now. I decided that I wanted to make it my life mission to assist in finding a cure for multiple sclerosis and support the MS community in any way I can.

I am passionate, driven, and determined to fight against MS. I want to join the many people around the world who dedicate their time and efforts to raising funds and awareness towards the cure, prevention and treatment of MS. Together I believe we can join forces, find answers, and one day beat it.
 
Anson Kowanjko worked with Multiple Sclerosis Auckland to launch “Bid For A Better Life” is a global fundraising platform designed to raise funds to assist in the research, support and treatment. The goal of this initiative is to build a treatment and research facility in Auckland, and to fund independent research grants and global research projects with the aim of finding a cure for MS.