How Setting Goals Shapes My MS Journey
This year marks the 20th anniversary of my MS journey. Twenty years ago, the vision in one of my eyes became temporarily blurry, and it was the first relapse. After the second relapse the following year, when I became numb on the left side of my body, and after a series of tests, I was diagnosed with Multiple Sclerosis (MS) by a very kind young female neurologist in a local hospital in Finland. It’s one of those moments in your life that you’ll always remember and the fear of an unknown future that lingered for years.
Multiple Sclerosis is a chronic neurological condition where the nerves don’t work the way they are supposed to. This means that the messages from the brain don’t always reach the body. Many people with MS look normal and healthy, but many also need a wheelchair to move around, because their legs don’t receive the message from the brain on how to walk.
Looking back at those moments now makes me realize how fortunate I am, because it has turned out that my MS is not one of the aggressive forms. However, there is one main symptom that affects me the most in my everyday life, which is fatigue. Fatigue also contributes to another symptom which is sensitivity to light, sound, and smell. For example, if I am in a noisy place with lots of different sounds, I start to feel very tired. But if I step outside or find a quiet spot for a while, the tiredness tends to go away. The same happens in a place with very strong smells.
Tracking Physical Activity to Help Manage Fatigue
It has been scientifically proven in many studies that physical activity and exercise are the best medicines for fatigue and overall mental health. The problem that I’ve encountered during the years after visiting many neurologists, in different hospitals and in several countries, is that they are not experts in the field of physical activity and are unable to recommend anything regarding it, so I was on my own to figure this out.
I got my first smartwatch in 2017. First, I wanted to see how much I moved each day. Once it was clear that I didn’t move nearly as much as the recommended 10,000 steps daily, I started using the smartwatch as a “personal trainer” to reach the daily goal of 10,000 steps. However, after months of use, I realized I never reached that goal, and it was frustrating. I started to blame the watch and that it didn’t track all the steps I took, so I got another smartwatch. For a while I wore two smartwatches, one on each arm, to see the difference in their readings. It was true that the first smartwatch didn’t calculate all my daily steps. I guess it had something to do with how I move (or in this case don’t move) my arms when I walk, but still, I wasn’t even close to 10,000 steps daily. After a while, I completely lost my motivation and gave my smartwatches away to friends.
There are many kinds of smartwatches and many manufacturers, but most of them are aimed at professional or semi-professional athletes. It’s really demotivating for a person with a chronic condition to use the predefined programs for athletes and never reach the goals, no matter how motivating the messages from the watch might be.
Using Adaptive Self-Management to Reach My Goals
People like me need activities that are adapted to our abilities and smartwatches that can be either fully personalized when setting goals, or that can have the goal feature turned off so that it’s only used for tracking. This concept took me years to grasp and understand. It’s called self-management, which means I understand and take personal responsibility for my own behavior and wellbeing. Or even better – adaptive self-management, which means I can adapt according to how I feel, the weather, or the circumstances around me.
My personal goal is to exercise (as much as I can OR at least a little) but often – to make it a habit. Some days are not as good as others, but if you can achieve at least something little every day, then it’s a win. It’s OK if you miss one of your swimming lessons, but it’s NOT OK if you miss two lessons in a row. Then you’re losing the main goal of making it a habit.
It takes self-discipline to change your own behavior and improve your self-management. But no one said it was going to be easy.
I started horseback riding a year ago. I’ve never in my life been in any contact with horses before, but I figured I’d give it a try. It looked so easy. To be honest, I fell in love with the sport after the first try. Being outside, in close contact with an animal that moves in a way that can be quite unpredictable sometimes has improved my balance, my mental wellbeing, and overall fitness, while reducing my fatigue level. Of course, I don’t go as fast or as eloquently as the younger people in the more advanced group, but I do my best (depending on whether I have a good day or not) in a small group with my teacher, who has been supportive. I’ve also learned my limits from the times I have fallen off the horse.
My goal is not to compete one day in a competition or to do it as a living. I do it for myself and I’m fortunate to be able to spend money on activities that help with my health and wellbeing.
My Journey Inspired Adhera Health
The good news is there is help for people who want to take responsibility for their health journey. That’s why I’m so proud to be part of Adhera Health, which is committed to empowering people with chronic conditions like me to live healthier lives. The scientists and technologists at Adhera Health (one of them my husband) have developed the Adhera Precision Digital Companion, which is an adaptive self-management platform that delivers highly personalized programs. The platform combines an AI-based health recommender system and content using real-world data that offers interventions and personalized recommendations based on observed and reported user behavior that helps people like me develop skills to better self-manage their condition and improve their lifestyle.
A major part of Adhera Health Digital Programs is setting goals. It is so important – it's what keeps me honest. It allows me to try new things and never give up. I’m grateful every day because after 20 years, I’m still in the stage of “invisible disease” – I walk without aid, I have a career, and a family with kids. Some days are great, some days stink but knowing it’s a journey helps. It reminds me of the famous quote “When you fall off a horse, get back on” and that’s exactly what I do.