One of my favorite books when I was a kid was a Choose Your Own Adventure book, in which I chased Carmen Sandiego all over the globe. Paragraph by paragraph, I decided what my next move would be in order to find her. It was fun and, without me knowing it at the time, it taught me how to make educated choices and that, based on those choices, there would be some sort of consequence, no matter the outcome.
Having a disease like MS is a lot like a Choose Your Own Adventure book. My entire day is filled with important decisions to make that will carry a great impact, even lasting into the next few days. For example, have you ever spent 20-30 minutes deciding what outfit to wear? No, not because you want to keep up with your trendy coworker, avoid wearing the same dress as someone else at a party, or because you think your butt looks big in those pants. Rather, have you ever had to consider how buttoning tiny buttons first thing in the morning can be difficult? Or that a waistband or seam might be digging into a recent injection site all day? Or that your medication has caused you to bloat and your clothes now fit differently? Will the fabrics you choose make your skin crawl or feel itchier than normal? What temperature will it be wherever you are spending the majority of your day? If you don’t plan ahead and it’s cold, your joints might feel stiff or your fingers and toes might be numb. If you wear too many layers, however, you might run into issues because you’re running to the restroom every five minutes. Or if you get too warm, your symptoms may intensify and you may spend the day feeling foggy and tingly.
All of these things to consider — just in deciding what to wear — can affect how much your energy depletes throughout the course of a day and how long it may take for your body and your focus to recover. Now imagine how many decisions we make throughout the day, no matter how small or routine. Each decision we make is a withdrawal from our energy reserve. How large or small that withdrawal is is determined by how we come to reach our final decisions and how much we’re willing to sacrifice the next day.
Since being diagnosed, I’ve learned how to budget my energy better throughout the day in a way that works for me. I still have much room for improvement and I certainly don’t always listen to my body, but as each day goes by, I do feel more in tune and know when I need to say “no” and just take care of myself. Many times, I only plan one or two things for a day or even sneak a quick nap or two in to lessen the recovery time I’ll need later.
What tricks do you use to make the most of your adventure?
This article was authored by Cat Stappas and originally published on the National Multiple Sclerosis Society’s blog, MSConnection.org, on January 10, 2017.