I’m a communications professional and I firmly believe in strategic plans and publishing schedules and here I have a blog and find myself at a loss as what to write. I thought I would have a deluge of medical updates or clear cut ideas, top 10 lists and action items. When I had much to share in May, I was too sick to write and then afterwards, found myself editing my experiences down to make my content more comprehensive. Occupational hazard I suspect.
The short and sweet update is that I’m better this week — whatever that means. I feel more emotionally stable and let me tell you, it’s quite a relief. And maybe stable is the wrong word as I know the good is felt more deeply because we also feel the bad. Success and victory are celebrated all the more because we understand failure and disappointment. Perhaps the word I’m searching for is equilibrium. My emotions are still swinging between laughter and gratitude and tears and fear throughout the week and sometimes day, but it doesn’t appear to be the constant pendulum swing by the hour or the minute.
My new metaphor is a teeter totter, one that is moving but still balanced.
I recently celebrated my birthday and spent the entire day outside. Cleveland was kind enough to provide the most gorgeous weather all day. A dear colleague turned friend brought breakfast and coffee to my home. Never at a loss for conversation, she and I chatted for more than four hours on my patio in the backyard, soaking up each other’s company and the sunshine. A few hours later, with Oyster my Labrador in tow, we headed to my sister’s house to sit in her glorious backyard. Eventually coming together with my parents and some friends, we had a casual al fresco dining experience complete with pizza, wine, cake and company.
When I was a child, I would spend all day in the summer outside, running around the neighborhood, playing softball, swimming in my neighbor’s pool, rollerblading, playing capture the flag and more. I might pop home for an ice cream sandwich or Snapple, but back outside I went. I vividly recall that luxurious feeling of exhaustion at the end of a summer day when your knees are skinned, your clothes have grass stains, you smell like sunscreen and sunshine and you fall asleep the minute your head hits the pillow.
Much older now, I realize there is good and bad exhaustion. There is tiredness that is earned from exertion, and bone-weary fatigue that is thrust upon you by chronic illness. This past weekend felt like childhood. I was surrounded by people I love and outdoors with fresh air and sunshine. I certainly didn’t frolic, but I did have an adventure and was the good kind of exhausted at the end of the day. When I fell asleep that night at 8:13pm according to my Oura Ring, there was a smile on my face.
I’m noticing small improvements in my physical function. I can’t begin to understand why but can only offer conjecture in a mad scientist formula. Some combination of stress reduction, physical therapy, sleep, time spent outside, puppy cuddles and the love and gratitude I have for friends and family. Whatever the formula, it’s working.
Previously only able to use a rollator to get around, I find myself reaching for my cane. Or if I’m puttering around the kitchen, I forget the cane all together. I’m going up the stairs of my home without stopping to catch my breath. I’m able to dorsiflex my right foot. I’m able to move my right leg unassisted by arms.
There are millions of movements we make throughout the day that we never have to think about. MS forces you to think about them. You quickly learn how much you take for granted. I’m noticing these minute improvements — not every day but often. MS has never provided a linear and upward trajectory of improvement but rather thousands of peaks and valleys in quick succession.
Learning to accept where I’m at when I’m having a bad day and celebrate when it’s a good day is a life long project.
The voice in my head, which for years has told me I would get worse and continue to lose mobility, has been silenced.
As I wait for my admission date, I instead keep thinking, “but what if it all works out?”