One thing I’ve found that is unwavering about M.S. Everything you do becomes very deliberate. How you walk, where you walk, how you eat, when you eat, how you sleep, when you sleep, how you dress. Routine and diligence become your friends, the backbone to your life.
I was thinking about it today, as I stepped carefully on the sidewalk, my eyes scanning for uneven pavement or cracks. I thought about how I go to bed and wake up at nearly the same time every day of the week. How I eat the same things. How I track things, and chart things. How I feel it every time I deviate from the norm.
How this disease has made routine a daily exercise.
My alarm began chiming at 5.15a this morning. The sun hadn’t begun to crest the horizon. The room was still murky darkness. Every part of my body felt heavy, aching and slow. And this was after going to bed at 8.30pm following a nap halfway through the day, riding my bicycle and eating zucchini spirals for dinner.
That’s my life.
I’ve been dying of fatigue recently. I attribute it to the unrelenting heat of late August and the frenzied stress of a growing business. The fact that half the time, every single person in my company just gives up and hands me their task. Because I have nothing of my own to do. Obviously.
I walked down the sidewalk, noting the picnic tables (if I bump them, a huge black bruise will color my leg for weeks, so I’d like to avoid that), noting the slanting concrete, the jagged edge of a crack, the person walking aimlessly toward me on their phone.
M.S. doesn’t allow you not to be present. You sort of have to be in the moment at all times ~ aware of your surroundings, what’s happening, who is around you. Because my eyesight gets dark and fuzzy, I have gotten really good at seeing ‘clues’ in large shapes. In knowing the train schedule and the track number ~ knowing where everything is located before hand. The bank address, the turning lane for a restaurant ~ so many things. Just so I don’t feel lost, so I don’t get swallowed up by the frustration.
I look totally normal. When you see me. I don’t have any super obvious handicaps. It’s not like when I needed Lydia and people could see there was something amiss. It isn’t like that anymore. When I’m talking, and I completely forget what I’m saying ~ it seems like anyone who gets distracted. But it eats away at you bit by bit. You start to doubt yourself. Wonder what will be next to go.
So you start to do everything very deliberately. Park in the same spot every morning. Follow the same pattern as the day before. Do anything you can to keep the fear at bay. To feign normalcy.