Okay, let’s face the truth: we chronically ill teens want a “normal” teen summer life, but we are not “normal”. Many of us with a hidden chronic illness LOOK normal, but unfortunately our bodies have a wicked sense of humor and can present very unpredictable and debilitating symptoms. Now add on the Texas summer heat (which, in my case, makes my dysautonomia symptoms worse) and I now face a long summer with extreme exhaustion in weather that makes all my other symptoms worse. So what is a girl like me to do?
There is one small part of me that just wants to crawl in my comfy bed in my dark comfortable room and imagine all my “what could have beens” if I was not sick. The bigger part of me, though, likes to stomp that little part down stubbornly and reminds me that I will NOT let my illness ruin my teen years. I will NOT let it rob me from fun experiences or setting goals. And with that determination, I make a list of the things I CAN do this summer and recommit to myself that I will remain positive… even when the doubt crawls in.
A couple of things to keep in mind: Please note this list is with dysautonomia teens in mind, however, can be modified to your chronic illness. Also, all the below recommendations are meant to be shared with friends! It’s easy to get trapped in the never ending doctor appointments and hospitalizations. Before you know it, weeks have passed since you last spoke to your friends. Give them a call and make socializing one of your biggest priorities this summer! (And let’s encourage all of our “normies”… that is non chronically ill teens… to reach out to their friends who are chronically ill. Their text, phone calls and visits mean the world to us who are mostly homebound.)
1. Swim! – Yes, I said swim! And no, I am not talking the Michael Phelps world record breaking swimming. I mean the fun leisure swimming with modifications. Besides it being a fun activity, it is one of the most recommended exercises by my doctors and physical therapist (make sure to check with yours!). Gravity isn’t as hard on the body in water as it is on land, which means your body won’t overwork itself. Concerned about the summer heat? Try to find an indoor pool at your local YMCA or go swimming early in the morning or late in the evening. Swim a little… rest… and repeat! Always swim with a friend. Besides it being more fun and you get to socialize, its good for safety too!
2. See the Stars! – Get your inner astronomy buff ready, grab a glow in the dark constellation map from your local library or purchase one from Amazon and head outdoors at night. There is something so peaceful about looking up at the stars and gaining perspective about life. Find a trampoline or grab a blanket and try to identify as many constellations as you can.
3. Pick your favorite actor Movie Marathon – Pop some popcorn, get into your pjs all day and enjoy your movie marathon in comfort! My pick would be hands down a Johnny Depp movie marathon! He is my all time favorite!
4. Check out free local events – Just about every city has free events during the summer. And remember this motto: when in doubt, go check them out! You might be surprised and have FUN! It is also a great opportunity to meet other people. Concerned about any possible long walks? If you have a wheelchair, like I do, bring it. (I know I had to get over my aversion to using my wheelchair in public. Once I did this, I was able to go out and about to see more for a longer period of time… instead of walking for a few minutes and having extreme exhaustion hit me.)
5. Spread Awareness – Share your story! At my charity Mik’s Hidden Hearts Alliance, we want to continue spreading awareness by sharing fellow chronically ill teens’ stories. Fill out the questions at the link here and let your voice be heard!
6. Serve Others – No matter what our circumstances are, if we focus on serving others it helps us to gain perspective. It feels GREAT to have a purpose for the pain we live with on a daily basis. From random acts of kindness to volunteering at your local hospital, think of all the ways big and small you can serve others. This one accomplishment will not only brighten someone else’s day, it can change your life by changing your perspective.
Once we start focusing on what we can do and not what our bodies limit us to do, there are many entertaining things we can do for the summer. Above are just a few ideas to get you started. What are some of your ideas? We would love to hear from you!
Posted by Mikaela Aschoff with Mik’s Hidden Hearts Alliance.
For more Mik’s Hidden Hearts Alliance updates, check our website at: www.mikshiddenhearts.org or our Facebook page here.
We help teens and their families who have Dysautonomia and other life changing hidden illnesses.
Dysautonomia Awareness – Support Group – Socials – Hope Kits