Tipping the Scale: When Today’s Choices Become Tomorrow’s Consequences
Like watching a scale tip up and down, I’m constantly assessing how any choices I make could affect how I feel tomorrow, or even later today.
Although my multiple sclerosis was as aggressive and unstable as a hurricane in my first few years with it, I’ve found a baseline since starting Lemtrada (alemtuzumab) treatment in 2018. Of course, I still have MS flare-ups — sometimes daily, sometimes less frequently.
If I’m having a good day physically, my baseline involves using a scooter to go out or into town alone. It’s strange now to need my wheelchair. But on bad days, you won’t see me at all because I can’t leave the house.
My baseline for more invisible symptoms, such as sensory issues and fatigue, is less predictable. I usually have some level of numbness from my chest to my feet, but I’ll experience sensations on a sliding scale between numbness and hypersensitivity. This may include feelings of burning, pins and needles, running water, and pain.
Fatigue is another given. For instance, despite my best intentions and medication, I was unable to write this column when I sat down to do it yesterday. Sometimes there is a trigger, but not always. This time, I can’t identify one. A fatigue trigger could be something as elusive as a long, deep conversation with an old friend several days earlier, or an issue that’s been causing me to overthink and worry.
My physical baseline, however, often resets overnight. If I’ve done too much, such as vacuuming, cleaning, or anything that renders me unable to walk in the evening, I’ll usually be back to my baseline by the next morning. But my tolerance for physical activities is low, and I don’t get much warning before reaching my limit. When I don’t see it coming, it’s like the opposite of a jack-in-the-box: One minute I’m cooking, and the next I’ve crumpled to my feet.
My tolerance has definitely improved since MS stormed into my life and left me paralyzed. Now I rarely let myself reach that point of tipping the scale over. It’s part of the reason my scooter has been revolutionary for me.
I struggle when there’s a lot of activity packed into a short time, such as when my husband and I visit family or friends or have people stay at our home. I often forget how tiring simply talking is. Coupled with the fact that I’m an introvert, I need my fair share of alone time to reset.
Big gatherings are also difficult to navigate. I’ll often be found seeking solace in a quiet corner rather than participating in the hubbub.
I tend to go off alone for a bit of respite from gatherings. If I don’t, I’ll find myself teetering on the edge of sensory overload, and that’s not a fun place to be.
People often ask me why I attend parties, see friends, or go out when I know it will have an impact on the following days. Simply put, if I didn’t shoulder the consequences of these things, I’d never do anything or go anywhere. And that’s a life I wouldn’t want to live.
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