I May Joke, But I’m Not Kidding About MS
Recently, I went on a women’s group bike ride organized by a local bike shop. This was a very new adventure for me. I’m new to group riding as my husband and I usually ride alone, and we tend to ride in places that we already know.
I felt too intimidated to join a group
I’ve been aware of this local ride that occurs every Thursday evening during the summer months for some time, but I felt too intimidated to participate. Their ride description mentions using road bikes (I have a hybrid bike), suggests using clipless shoes (I’m scared to wear shoes that “lock” my feet to my pedals), and states that they ride an “easy” 13-14 mph (I don’t average anywhere near that when hills are involved).
Persuaded to give it a try
Based on each of these stated parameters, I had been very reluctant to give it a try. However, two ladies in the group talked me into it and assured me that their “no drop” ride really means nobody is left behind. I found this to be true as about 1/3 into the ride when it was apparent that I couldn’t keep up. Two cyclists stayed with me as the majority of the group rode ahead.
During some of the times that I had to walk my bike up a steep incline, one of the ladies talked to me and asked questions. First off, she noted that I was already working 3x harder than any of the rest of them just based on my bike equipment. The fact that I obviously weighed more than any of the other women was probably factored into that statement.
Talking about my MS and RA
At some point, the discussion came around to how I have multiple sclerosis and rheumatoid arthritis, and my knee was swollen from having had a cycling accident the week before.
She asked, “And you’re out here riding today?!!”
“Yes. Today I can ride, although I might not be able to walk tomorrow,” I replied in a joking manner.
Each day with MS is different
But I wasn’t really joking. It’s true that I might wake up one day and not be able to walk. Years ago, I woke up one morning and couldn’t see. It took 3.5 months before my vision returned to normal.
Taking advantage of the days when I feel well
With time, I have come to take up an attitude of “better do it now when I can” to certain activities, such as cycling. I might sound flippant when joking about suddenly not being able to walk, talk, or see. But it’s a very real risk of living with MS.
The day after this first women’s group bike ride I felt surprisingly good. I thought that I would feel awful, but I didn’t. That was awesome!
Trying the same ride again
Two weeks later, I went on the ride again. We took the same route, and I was able to keep up for most of the ride. I walked fewer hills and increased my moving speed by .6 mph, which might not sound like much, but it meant that I finished my ride within 5 minutes of everybody else. I didn’t have as much rest time on the ride because I was riding more slowly, but at least I was part of the group.
Feeling the strain from my activity the next day
The next morning, I felt it. My walking WAS noticeably affected. With legs weak and uncoordinated, I did a little furniture and wall walking throughout the house. I also spent time napping for several hours during the two days after that 2nd ride.
Recuperating was the most important thing I did over that weekend. But the ride was worth it.
I joke about MS, but the effects are real
I might joke to others about the effects of MS, but deep down I know that they are very real and very serious. I’ve been there, and I continue to face symptoms every day.
What people don't see
What nobody could see after that 2nd group ride is that I couldn’t feel anything from the waist down. I had to lean on my bike while walking it to my car to pack up and go home. My legs were “flopping” a bit and I had to concentrate on keep my toes from tripping me up in the parking lot. My vision was blurry out of the right eye. At least I didn’t have far to drive home.
How I felt when I got home
When I came home, my husband brought everything (bike and gear) into the house, and I immediately sat on the couch. He brought me several ice packs and a glass of ice water to help hydrate and cool me down. I had to be careful while climbing the stairs to go to bed later in the evening to avoid tripping and falling.
Although I can bike and (almost) keep up with the group, I must balance that with what I give up behind closed doors. Less than two hours on the bike cost me about 2.5 days of inactivity.
Perhaps joking is a way to show strength in the face of MS. But the effects of MS are never a joking matter.
Be well, my friends, and keep moving.
Were you misdiagnosed with something else before receiving a MS diagnosis?