Considering long-term goals potentially doesn’t always feel like a priority in early diagnosed multiple sclerosis (MS) patients or something to discuss with a healthcare professional.
For many, disease progression can seem far away into the future, and the potential of experiencing new or worsening symptoms is not a priority.
While MS presents itself differently for everybody, some can feel that focusing on disease management outside of treatment isn’t necessary when there doesn’t appear to be much impact from the disease in your life at this stage.
Talking to those around you on forward-planning and setting achievable goals not only highlights the importance of planning ahead for your disease, but it can also help manage disease progression during early stages. It ensures you’re taking an active role in the continued management of your disease now, and for the future.
We spoke to Kandis, who was diagnosed during her early-20’s, about her own journey and the importance of setting achievable goals to help manage her every day symptoms and the impact of MS on her life.
My name is Kandis, I’m 31 years old turning 32 in a month, which seems crazy to me. I live in Toronto and work as a mortgage agent. I’m the oldest of four kids, and as of this past Christmas, have a fiancé!
I have a dog named Lucy who is a rescue from Mexico and she’s awesome – and that’s a little about me.
I was studying at university the first time I experienced any symptoms of my MS. It was in the middle of exam season and I was reading for hours. Then, one morning I woke up and realised that my eyes weren't able to fixate left or right.
At the time, I figured it was from being tired, but I ended up going to the on-campus doctor just to get my eyes looked at. They referred me to a neurologist because from what they could see, there was nothing wrong with my actual eyes so they thought it could be something else.
I went and saw a neurologist, and that was the first time I had heard of MS being a potential explanation for what was going on.
Later on, I had to go home for the summer after exams and by that point my vision had gone back to normal.
I was 18 at the time so in my mind I thought, "Well, I guess it wasn't actually that, I should be fine and I'm just going to completely ignore it and pretend it didn't happen and just continue living my life."
So, I finished school and I got a job when my next relapse happened – again, it was vision related. I worked in a call center, so I was always having to look at the call board. I noticed the colors were looking dim to me. As the week progressed the colors seemed less and less vibrant to the point where it was almost just like different shades of gray.
Obviously in the back of my mind at this point I was thinking, "oh no, this could be MS." But, I didn't want that to be the case so I went to an eye doctor, I went to my general doctor, everything other than a neurologist to find out what was wrong.
At the eye doctor, I was diagnosed with optic neuritis, and was sent to the emergency room, where they diagnosed me at that point saying that I had relapsing-remitting MS, and that's pretty much my reality now since then.
My life is very similar to anyone else, I work Monday to Friday, come home, walk my dog, maybe see friends and go visit my family on the weekend.
I’d like to think it’s a pretty normal life for most people in my age group!
Eating healthy and exercising are both two things I am slowly getting better at. They also help me manage some of the triggers of my symptoms, like stress.
I’ll admit that it’s no different because I have MS, at the end of the day I’m human and I don’t always want to have a salad.
Even still, every day I make a little goal for myself to make healthier food choices and walk the dog for a little longer, and I know that it’s good for me.
Any increase in body temperature can trigger my MS, whether from exerting myself exercising or relaxing in the garden with my partner. My MS does get in the way in those instances. It’s a balancing act of being outside in the fresh air, but also preparing myself knowing that it will exhaust me later on.
Setting goals for myself is about understanding that if I make changes now, they’ll have a longer-term impact for me and my health later on.
My partner definitely supports me.
Shortly after we met he began to participate in MS charity events and completed an MS bike ride. I cheered him on at the finish line and he convinced me to do it with him the following year. I hadn't ridden a bike in years, however we did the bike ride together and I remember crying as I crossed the finish line.
I was so proud of myself that I had achieved my goal and there were so many people there all supporting the same cause.
He's kind of the chef in the family too, which is nice because I don't like cooking. So if he has anything to say about it, I'm drinking eight glasses of water every day. He tries to encourage me to eat healthier. He tries to get me off my butt to go for a walk down to the water with him.
He's been kind of my biggest advocate when it comes to trying to live a bit healthier of a lifestyle.
While MS is a progressive disease from the start, having open and candid conversations with your healthcare professional can help you not only receive the right information about your disease, but help you in making the right decisions to support you in managing your MS now, for the future.