Being diagnosed with multiple sclerosis (MS) in 2019 caused me to feel like I’d been catapulted into a progressive state of impending doom, confusion, and pain. I kept thinking to myself, “Who knows when I won’t be able to do the things I love, so I need to cram it all in as quickly as I can.” I am a walking testament to the fact that this mindset does not work.
Slowly is the best way to get where you want to be — baby steps … one day at a time. But how can we be so nonchalant when we are living with a progressive disease? To address this, I want to share an answer to a question I received from a MyMSTeam member who recently wrote looking for advice about a topic we all know: MS and lifestyle changes. Check out their question, along with my answer regarding what has helped me along the way.
Question: Do you recommend any ways to keep doing the hobbies you liked before you were diagnosed? I miss a lot of the things I used to do.
Answer: If you’re anything like me and you’ve checked off the personality box for being optimistically resourceful, then you’re already ahead of the game in figuring out how to navigate life with MS while maintaining the lifestyle you want. It can be hard to see some of your hobbies slip away as you put the raves and mud runs on hold, but you don’t necessarily have to bid farewell to all the things you love to do in life. Check out a few strategies that have helped me embrace my hobbies while living with MS.
I’ve always been fairly resourceful, which I credit to growing up as an only child. My mom was also able to make lemonade out of lemons, finding fun activities for me during my early years while she was financially struggling. Therefore, I’ve been able to develop hobbies that may seem somewhat outside the box.
For instance, I’m an avid angler. If you’re not familiar with the term, this means I love to fish and I take it very seriously. Both saltwater and freshwater fishing have been passions of mine since I was about 5 years old. I’ve fished lakes in Maine, New Hampshire, and the Sierras in California for bass and trout, and I’ve dropped a line off the coast of Catalina and in Mexico’s waters for dorado and bluefin tuna.
After my MS diagnosis, one of my biggest concerns was how I’d be able to stand on a rocking boat again, particularly with a group of 50 other people on it. I loved being the only woman on a boat of 50-plus guys who thought I knew nothing about fishing. The shock on their faces when I pulled in a 35-pound dorado and a 45-pound bluefin after a one-hour battle of strength and determination was priceless. I loved the competitiveness of the whole scene.
But now I have to ask myself: Is it in my best interest to put myself on a giant floating object with 50-plus other people when I have balance and mobility issues? Not so much. But there’s nothing stopping me from strapping myself to the side of the boat or posting up in a deck chair instead. I tend to do more freshwater fishing now, simply due to the significantly lower intensity factor. But when I hear the counts for tuna are high, you bet your bass I’m going to look for a small boat with less capacity and ask if they accommodate people with disabilities by providing deck chairs and such. Better yet, I’ll try to find a friend with their own boat, so I can fish at my own pace. My days of overnight fishing trips are definitely gone, simply because there’s no chance of sleeping well on them.
Ultimately, it all comes down to this: If you want it badly enough, how much work are you willing to do to find alternative ways of making it happen?
Now, I know that not everyone reading this is angler obsessed like me, so here are some suggestions for generalized hobbies, along with tips I’ve found to make them MS-friendly.
Maybe I haven’t mentioned your specific hobby, but my point is the same: If you love it, you should be able to find a way to keep doing it.
And yes, I truly believe that you can! I recently started an “I can’t” fund for my 12-year-old son. He is very self-critical and determined, yet when he allows himself, he can enter into a mindset of little confidence. So earlier this year, every time he said “I can’t,” he put one dollar into the fund. After a few weeks of my son going broke, the “I can’ts” stopped completely, and overall he became more confident and determined to figure out solutions.
I’ll be honest — it can be really easy to give up and throw in the towel. But why should you sacrifice something you love because of a disease? You didn’t ask for MS. You didn’t cause yourself to have MS. For many of us, MS has caused pain, struggles, numbness, weakness, fatigue, and more. Why should it take away the things we enjoy doing in life?
So get out there, get creative, get scrappy, and make it happen.
MyMSTeam columnists discuss multiple sclerosis from a specific point of view. Columnists’ articles don’t reflect the opinions of MyMSTeam staff, medical experts, partners, advertisers, or sponsors. MyMSTeam content isn’t intended as a substitute for professional medical advice, diagnosis, or treatment.