I wake up at 6 o’clock every day. My muscles are stiff and achy, from the base of my skull to the tops of my feet. I usually have a headache, too. Some days that goes away by the time I leave the house; sometimes it’ll stick around all day.
Every morning upon wakening, I crawl into the spare bedroom across the hall. (I literally crawl; the floor creaks and I don’t want to wake up my husband.) I slowly stretch my tight muscles. The lights are off, although this time of year the sun is already up so I can see my kitty sitting next to me with her eyes closed in disapproval of the early hour. Pointing and flexing my toes is painful. A cat-cow yoga pose feels equal parts good and bad for the angry muscles that run along each side of my spine. Simple neck rotations are part of my routine every day, even though they make me cringe.
It’s 6:30 and my energy is starting to wane. I sit on the toilet lid to do my makeup and hair. Next, I spend about 10 minutes listening to a guided meditation. Relaxation is an important part of managing my symptoms.
It’s almost 7 o’clock. I leave the lights off in the kitchen as I pack my lunch and eat my breakfast. My headache is still lingering. I spend a few minutes in the living room playing with my cat and enjoying the stillness of early morning. I get a few more stretches in while I’m sitting on the rug.
My dad once asked me if I ever feel good. Right now is it: I feel pretty good most days from about 7 to 7:15 a.m. It’s a great 15 minutes!
Driving 15 minutes to work, then walking from the car to the building and up three flights of stairs to my office saps a significant chunk of my energy. I find driving exhausting because of the constant mental focus it requires. When I get to my office, I walk around to the back side of my desk to hit the power button on my laptop and I sit for a moment on a stool to rest. Once in a while, a coworker will see me sitting there and laugh. I laugh, too. It’s ridiculous to be this tired before 8 a.m.!
Throughout the day, I move around a lot. I use a standing desk and switch often between standing up and leaning back on a flexible, one-legged stool. I am careful to always square up my body with the monitor I’m using; otherwise, my neck and shoulders get angry. I try to strike a balance between moving too little and getting stiff, and moving too much and getting tired. I know if I surpass a certain number of steps I am likely to run out of energy. I try to spread my maximum allowable steps throughout the day so I don’t crash too early.
Despite monitoring my steps and taking a half-hour lunch break to stretch and rest, there are days I (begrudgingly) have to leave work early because I’m so tired and sore that I am worried about driving myself home.
After work, an evening at home involves a continued effort to strike the right balance between resting and doing things that need to be done. I lie on the floor and observe dirty dishes, shaggy grass and filthy floors. Sometimes I ignore them and allow myself to rest, read or do yoga. Other days, those chores loudly call my name and I run my gas tank past the emergency empty warning. “Pace” is a new four-letter word in my life since my diagnosis. It’s a struggle.
Bedtime comes too quickly at 9, but I’m always ready for it. Getting into bed is a good hurt. My body hurts, but it also feels so good to lie down, cover up and fall asleep.