The South Canterbury Multiple Sclerosis Society is holding its annual fundraising Garden Walk this Saturday. One in every thousand New Zealanders is diagnosed with the autoimmune disease, including Timaru woman Lisa Kelly. She describes how she discovered she had MS.
It all started in late August, 2023.
We had just got back from living it up on holiday in Auckland and I had a super itchy face and neck — I thought I was having a reaction to skincare product I recently started using.
Later on that week I noticed tingling in my arms and I couldn’t grip things properly. My arms, legs and feet felt tingly, hot and cold at the same time. I didn’t think too much of it — apart from the fact it was frustrating.
These symptoms continued for a couple of weeks. September came and suddenly it was the week of my 21st birthday and I noticed my eye felt sort of itchy. Like I had something in it.
So I kept trying to wipe it and used eye drops for a couple of days . . .but nothing was working. I started to panic when I couldn’t see much at all. So I booked into the doctor.
After all the usual checks, that afternoon I was sent straight to the eye clinic . . .uh-oh. My left eye was completely fine but my right eye couldn’t see any of the letters on the wall.
That afternoon I went to the ophthalmologist and was told I had optic neuritis (inflammation of an optic nerve). Which would explain it all. On one hand I was relieved to have an answer to why I couldn’t see, on the other hand I was absolutely gutted.
I was then told I would have to have a steroid infusion for the next three days, falling on the weekend of my birthday party, a day I had been planning and looking forward to for months. It was so gutting and upsetting.
I think this was probably one of the times I have been most upset in my journey so far. People were coming from all over the country to celebrate with me. To postpone or cancel, what to do?
I was devastated but little did I know what was to come [Lisa had two infusions before her 21st birthday in September 2023 and the third the following day, then she had an MRI].
Later that afternoon I had an email of the MRI results. Mum and I read through it although, we didn’t understand a lot of it. We got to the optic neuritis and underneath it read “likely multiple sclerosis” [MS].
That’s when it clicked that this is all a bit more serious than I thought [Lisa had a specialist appointment in October to talk about MS, where to go from here, and review the MRI scans, a lumbar puncture followed in November].
I had to stay at the hospital for two hours after the procedure to ensure I was all right. Before the doctor left, he mentioned I would soon be starting Tysabri. I didn’t know how I felt about all of this. On one hand I was excited to feel more ‘‘normal’’, but on the other hand, this may be it for the rest of my life.
Fast forward to two years later . . .Wow. MS is a crazy disease. Reading back on my diagnosis from the start is strange.
While some things are very much the same, others are completely different. I have had many infusions now, every six weeks. I don’t feel the same uncertainty as I once did.
I am pretty certain I know my body and how I’m feeling. I am still taking it day by day, dealing with pretty much the same symptoms, give or take a few. I think my view has changed. Knowing that this is me forever, or at least until there are more possible life-changing drugs available!
I’ve learnt a lot about myself and the people around me. Who will be there for you, for the long run and who won’t. You have to be strong, stand up for yourself and what you believe is right.
I want people to know, it can happen to anyone. You’d never expect it to happen to you, until it does. So take care of your friends and family because you never know.
