By Dawn DeBois
Last week, a popular meme circulated in the chronic illness community. It said “Sometimes you’ll move mountains. Other days, you’ll move from the bed to the couch. Both are okay and necessary.” The message must have resonated with so many in the chronic illness community because it popped up on multiple pages.
While this meme circulated, I was experiencing several days of very low energy myself. My move from the bed to the couch was then followed by a move to my recliner and back to the couch again. I napped multiple times, multiple days in a row and still went back to bed before 7:30 pm. If I glanced at social media, I’d see friends having fun at concerts, camp or at the beach. Me? I hadn’t showered for days, and was curled up in the air-conditioned refuge of my home. But you know what? That was okay. It’s what my body needed at the time.
Growing up, we are conditioned to make the most of each day when the weather is gorgeous outside. TV was never allowed in my house during the day. We were sent outside to ride bikes or find an adventure to partake in with the neighborhood kids. As an adult with multiple chronic illnesses, it’s difficult to break that mindset. My brain tells me to get outside and seize the day, and yet my body tells me otherwise. When it’s hot outside, I’d love to be out enjoying the water somewhere, but my neuromuscular disease tells me to stay where it’s cool or risk a flare and great weakness to follow.
One of the greatest challenges of managing chronic illnesses is managing our own expectations that we set for ourselves. It’s not enough to set aside the ableism that surrounds society in general; we must truly respect what we are able to do, when we are able to do it, and not cast judgment on ourselves when we simply need to rest our bodies and our minds. How much benefit is there to resting our bodies if our mind is saying it is not okay to do so and that we should be productive in some shape or fashion?
I realized today just how much pressure I put on myself because of the ongoing beautiful summer weather. We haven’t had a day of rain in months. Today, a nor’easter hit New England, bringing rain and hopefully a break to the drought. However, it also brought a much-needed break to stop putting pressure on myself to be productive. When I saw the weather forecast, I thought, “Great! I’m not going anywhere. Today will be a no shower ‘messy hair don’t care’ day, and I’ll just relax.” My entire being is going along with the plan because when looking outside, I’m not internalizing that I should be outside doing something. So instead, I’ve read, written a column and decided to write this blog post, too. I’ve had mental energy to write because I’m not stressed over what I “should” be doing!
I think chronically ill people experience the opposite of seasonal affective disorder (SAD). We become SAD when our health prevents us from enjoying the gorgeous weather outside, and in turn, that stops us from resting and recovering on the days the weather says we should be outside enjoying it. Chronically ill or not, everyone needs days to rest and recharge. Try not to be “sad” on days that are beautiful if your body tells you to take a break. Being “sad” will just take energy away from recharging. Try to enjoy your view outside, instead.