Acknowledging the Price We Pay for a Day of Play

I love to go out and explore bits of the world with family and friends. Dinner at a restaurant, coffee dates, shopping trips, festivals, vacations — all of these are awesome activities.

It takes some effort and teamwork to get my medical equipment out the door and tote it around with us so that we can safely partake in these activities with SMA, but we’ve got it down to a science. Even with all that equipment in tow, we’ll be sure to have a wonderful time together. And we’ll definitely take pictures to help remember the occasion.

Then we’ll likely select our favorite photos — those that capture smiling faces, sun-filled skies, or delicious food — and share them on social media to keep everyone in the loop about our lives and, hopefully, make them smile, too.

But what about the parts of our lives we don’t post?

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In a recent column for Pulmonary Hypertension News, my dear friend Jen Cueva shares that there are aspects of her life that typically stay hidden from the public eye. “My posts on social media are often on my ‘good’ days, when I’m dressed and outside, enjoying life,” she writes. Many of us can relate to preferring to share our “good” days.

For me, the world doesn’t always get to see what comes after a day or two of fun. My body has very limited energy, so all of that play will take its toll. There will likely be a price to pay the next day.

My recent birthday celebration demonstrates this well. For our day of play, my mom planned a surprise trip to Who North America, the only official “Doctor Who” store and museum in North America. It’s located in our home state of Indiana, but this was our first time making the two-hour journey. For a hardcore Whovian, wandering its aisles of merchandise and displays of collectibles was a perfect birthday surprise.

Halsey survives an encounter with an alien Dalek at Who North America during her 25th birthday celebration on Sept. 24. (Courtesy of Halsey Blocher)

Since no celebration is complete without good food, we also stopped at a restaurant that was new to us for a delicious meal on our way home. My gnocchi was spectacular, and for dessert, we all split a decadent salted caramel crème brûlée. Our fantastic server also made sure we didn’t leave without complimentary chocolate truffles for my birthday, and he even tracked down a candle.

After a day of birthday fun, Halsey and her family enjoy a meal complete with chocolate truffles and a celebratory candle on Sept. 24. (Courtesy of Halsey Blocher)

The day was absolutely perfect, and I loved every minute spent celebrating with my family.

The day after

That long car ride and day of excitement wore me out, though. The next day, I woke up with a headache that was probably caused by a mixture of being tired and fluctuating fall weather, which is one of my migraine triggers.

For several hours, I lacked the energy to do much more than relax and watch television, so I took ibuprofen and listened to my body’s demand for rest. Because I listened instead of pushing myself, I was able to regain my energy and ditch the headache in time to enjoy a quiet dinner and cake with my grandma and her sister at our house that evening.

This sort of thing isn’t guaranteed to happen after a big day. There are other factors, such as the weather, that make it unpredictable. But because it’s always a possibility, it’s best to plan for downtime in our schedules to ensure that my body isn’t accidentally pushed beyond its limits.

Finding balance

Despite knowing that we may need a break afterward, we have no intention of giving up these adventures anytime soon. Recovery days don’t put a damper on that enjoyment for us. They’re a fair price to occasionally pay for a day of play.

We also aren’t going to stop sharing about our fun outings like Multiple Sclerosis News Today columnist Ben Hofmeister is learning to do. Although he’s been hesitant to share good news in the past because of guilt, he’s realizing that people may enjoy hearing his good news just as he enjoys hearing theirs. In his debut column for the website last June, Ben writes, “I’m beginning to see that having good news shared with me doesn’t make me feel bad, just as letting some light in doesn’t make it darker.”

This isn’t to say that we shouldn’t acknowledge our bad or tired days. It’s important to take time to care for ourselves and recognize our need for rest. But it’s OK if we choose not to share those moments with the whole world.

It’s also important that we not only recognize that we sometimes need breaks, but also remember that the same is true of everyone around us. We don’t have to be given a close-up view before we can extend grace and compassion to someone. That’s a gift we can give to anyone for their good and bad days.

Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.