On an MS forum, I recently came across a "wild diagnosis stories" thread about peoples' reactions to being diagnosed. Not the lengthy wait times or misdiagnosed problems people faced, but what they did in response to the diagnosis. Some dyed their hair a bold colour, others got piercings or tattoos, and some quit jobs and traveled around the world. It got me thinking and I guess I'm boringly pragmatic - I got myself in better shape.
I tend to put my faith in science (less so in the politics of pharmaceuticals), but knew that starting a disease-modifying drug program could only do so much. I'd have to take responsibility for my health more than I had been doing and start paying attention to maximizing function if I wanted to do everything I could to hold onto it longterm.
When weighed for my first MRI, I was shocked to know my weight had hit 200 lbs. I had completely lost sight of my own body. In the past, I'd hit the gym on a nearly daily basis. When I moved and that was no longer an option, I started running around my janky neighbourhod in Ontario to the dulcet sounds of Mary J Blige and old country tunes. I did ashtanga along with a pastel-painted TV show and later on my own, managing to get my inflexible self mastering some damn intricate poses. My dumbbells and I had a love-in every other day. But, when I moved from Ontario to the maritimes, my life became still. My semi-sedentary nature was entrenched in a sedentary lifestyle. Work had cheap junk food in the cafeteria. I didn't have anyone to work out with. Excuses to mask laziness. [I tried to think of a nicer word for laziness, but the shoe fit] I look at photos of me from the early 2000s and wonder who that girl is and how she got so full of face.
Just before my diagnosis, I had a little epiphany and realized that my life was too sedentary for my liking so I started walking regularly. I bought and started using an elliptical machine. Then, I was stricken with MS [sometimes I like to use the phrasing other people use to describe me...isn't it hilarious?] my feet went numb, and my legs and entire lower body quickly followed suit, and I didn't think twice about siting on the couch to wait for bad news. Did you know that I stress bake? For real. If I'm stressed, the house smells like cookies or stout cake.* Inactivity + stress baking. Oh yeah, great combo.
When the news of having MS arrived, I was having panic attacks on the regular. The first time I tried to go for a walk, I ended up going solo. I made it halfway around my 2km block and panicked. Shortness of breath, dizziness, heart banging out Bartok - I thought I was going to black out on some stranger's perfectly manicured lawn in suburbia. Impaled by a Weed Man sign. Instead, I took a shortcut and talked myself through getting home. "You're fine. You're not dying any faster than anyone else. You've walked this countless times. If all else fails, you can whisper a cry for help and people will call the police for by-law violation". I joke with myself when worried. It helps.
I made it home, flustered and teary-eyed, but in one piece. So, then I went out again. I bought a cane. It was for mental support as much as physical support. At that point I couldn't feel the bottoms of my feet (or the tops, for that matter) and that sensation of being off balance was affecting my willingness to go places. I had had a panic attack in the mall with a friend a few days earlier and had hardly been outside the door since. I knew the numbness was a big part of the panic and I didn't want a cane, but I wanted panic even less.
I eventually tried that walk again and I was fine. I carried the cane, but didn't use it. I definitely needed the physical support for a while, but when I got used to the sensation [or lack thereof], showing myself I could go without it was important to me. Then I went for another walk. Then another. Pretty soon I was walking around 30 km a week and feeling great. I stopped stress baking. I bought a weight scale (despite a love hate relationship with the concept). I got back into a little weight lifting and some yoga. I decided to become a pescatarian. I later realized it'd be just as easy for me to become a vegetarian, so I dropped seafood too.
In the years since diagnosis, I've made better choices. I made the difficult choice to leave a relationship that was easy and kind because it felt like I was alive but not living. I picked up new hobbies...ones that took me outdoors! I have half marathon medals now! I've worn out too many pairs of sneakers to count. I dropped negative people from my life as much as possible. Life with MS has changed me in numerous ways, and yeah, it's a huge, scary monster some days, but not all days. I didn't do anything wild or unconventional. No blue hair. No new piercings. But I did react and adapt. Those intricate yoga poses? Not even close to doing them now, but eff that, I have snowshoeing to do.
*Poor Nance. I'm happy so she doesn't get fresh cookies.