A Different Normal

By Maya Brown-Zimmerman

It’s summertime, and that means our kids are home from school, there are vacations to take, fairs to attend, pools to swim in…and heat and humidity to combat.

I love the warm weather and all the activities that come with summer, but I have to be careful not to overdo it. Having two toddlers (ages 3.5 years and 1.5 years) can make pacing myself a little more difficult too.

My biggest tool in managing my energy is my calendar. I schedule everything: doctor appointments, play dates, church meetings, etc. and I try to not plan more than two things a day. Not only does that keep me from getting too tired, it’s better for my kids too (one has autism and one has Marfan syndrome. In fact, just last week I tried to get M, my son with autism, roused to go to the library. We’d already had a playdate and doctor’s appointment. M protested that he wanted to stay in his room, that he was tired. I started to argue, but realized this was a great learning moment for me: my son was telling me his limits and just as I need to respect my body’s limits, I need to be cognizant of my children’s limits as well.

In addition to scheduling, I make sure to always keep a couple juice boxes and small snacks on hand to boost my blood sugar. Since the summer months are a prime time to have trouble conserving energy, I went to Facebook to ask friends with a variety of chronic illnesses (psoriatic arthritis to cancer to Marfan syndrome, and many others) what tips they have to share. Here are a few that make good sense (and are good to keep in mind year-round!):

-  Stay in the basement, which tends to be cooler than the rest of the house

-  Drink a lot of fluids

-  If your kids are older, employ them as helpers!

-  Spend time in the pool

-  Protect yourself from the sun (sunscreen, hat, sunglasses)

-  Yoga, which can help the joints

-  Get enough sleep at night

-  Plan relaxed, indoor activities: going to the movies, playing games at home, etc.

-  Make sure to laugh and spend time with friends!

What are some of your favorite summer activities? How do you conserve your energy?

Maya Brown-Zimmerman, MPH, is a patient advocate and volunteer with the National Marfan Foundation as a member of the board of directors and coordinator of the teen program. She also chronicles the ups and downs of parenting two sons with special needs while having a chronic illness herself at Musings of a Marfan Mom and the Sensory Processing Disorders Blogger Network.