Getting Home Before Midnight: Self-Care Planning With Chronic Illness

June 7, 6:55 p.m.

I’m standing proud and tall dressed in my new “official school chorus” shirt, generously provided by the parent of one of my students. As I raise my iPhone to my ear to hear the starting pitch (yes, there really is an app for everything), I take a calming breath, ignore the sounds of the crowd and focus on the eager faces of the 53 young children in my chorus.

Tonight we are to sing the National Anthem for our local minor league baseball team and 400 people from our school community have come to cheer us on. With a bright smile to allay the fears of my young charges, I raise my arms and begin to conduct. They sing their hearts out, stand proud and I’m overcome with joy and honored to be given the gift of leading them. And just like that, it’s over. We run off the field as instructed (and because they are 9-11-year-olds they take the instruction to run very literally, leaving me chasing after them) and it’s time for me to assume the role of General. My chaperones jump into action with their clipboards I’ve prepared for them so we can assure all children are safely and orderly returned to the correct parent/guardian that dropped them in my care (they tend to frown when given one that looks similar but isn’t the right model).

Once all have been accounted for, and the last of the chaperones has been thanked, I can enter the game and join my family for a fun night out at the park. This of course means catching up with alums, parents, students and generally spending so much time enjoying myself talking and hugging and laughing that I forget to sit, eat and drink my water. (My husband jokes I don’t really need a seat since I never sit anyway). But nevertheless, I love these moments.

The “outside the classroom – OMG she’s human” moments are so crucial to developing relationships with your students and their families. I see sisters I taught from when they were 6 who are now accomplished young women, one about to go off to college. There’s the big brother of one of my current students, a former chorus student who discovered a love of singing in fifth grade who is now off at our next building and mom brings him by “just because he was dying to see you.” I could go on and on (and I tend to, just ask anyone) because these are my “kids.”

Finally, I make my way back to my seat, as my back and neck are screaming, only to find my husband and kids on their way to find me. He knows that, just like Cinderella, my time at the ball(game) is almost up and he needs to get me out before the magic is gone, the clock strikes midnight (OK, more like 9:00 p.m.) and the lupus takes over.

June 8, 6:55 p.m.

Slowly and gingerly, my husband helps me up the stairs. The swelling in my ankles and knees makes one flight feel like Mt. Everest. He has to help me undress and get ready for bed since I just don’t have the strength. I sat too long on the couch. I should have gone up when he told me to a half hour ago (he will love seeing he was right in print – OK, he can have this one). We make sure I have my doses of medication I take before bedtime, iPad, phone and anything else by my bedside. Things hurt and I’m mentally and physically done. My face is on fire from the maylar or “butterfly” rash currently spreading across my cheeks and nose, telltale signs of a lupus flare.

As I struggle to find a comfortable position to rest my weary body, my son comes in to read with me. This is one of the ways we’ve found to stay close as a family, despite the fact that on nights like this, my kids are tucking Mommy in. I know my daughter will be up in a bit and the three of us can have some nice snuggle time before their bedtime…if I can only keep my eyes open.

None of what’s happened tonight is a surprise. In fact, my husband and I planned for it when I set the date for this event back in September. As they say on the popular television show  “Once Upon a Time,” “Magic always comes with a price, deary.” Well, I may not live in Storybrook, the fictional town of the series, but I know that in the land of lupus, fibromyalgia and other chronic illnesses, a night out, fun event or even sometimes a trip to the food store (um…not so glamorous) can require hours to days of recovery.

We all know that as we age we remark that we can’t “bounce back” like we used to. When you live with chronic illness, forget bounce – think belly flop. We’re talking the kind you see at the neighborhood pool and everyone cringes in horror (yet video of it makes the finals of America’s Funniest Home Videos, go figure). The overwhelming fatigue can hit you like a ton of bricks stopping you in your tracks, the kind of fatigue that you’re still tired after you’ve woken up from 10 hours of sleep and need another nap.

Everyone has different ways in which their own body lets them know “I’m shutting you down for repairs” and eventually you learn to listen to it or end up face-planting somewhere (not pleasant, been there, face-planted there, usually involves a ride in a truck with very loud sirens to the “white coat hotel”). So, don’t be as stubborn as I was – learn to listen to your body and realize that rest and recovery is an essential part of your self-care.

Going to bed at 7:00 p.m. is not my ideal (we didn’t even have dessert!) but tonight, this was always part of the self-care plan. We knew not to plan anything for this afternoon or evening as “the price” for last night’s fun was the flare and crash tonight. Hopefully, by getting the rest and recovery time my body needs, I can, if not “bounce,” maybe land a little more gracefully. Just in case, we’ve kept tomorrow’s itinerary after school light as well. These are the lessons learned after too many “belly flops” and way too many “I told you sos” from my husband, who somehow can always spot when it’s a “quarter to midnight” way before I can.

Do I regret going out last night because of the pain I’m in today? Not one bit. I refuse to let these diseases stop me from living the fullest life I can. I refuse to let these diseases rob me and my family of any more amazing memories. I refuse to let these diseases hold me back professionally. But most of all, I refuse to let these diseases rob me of today’s joy because I fear tomorrow’s pain. Today is all we are promised, tomorrow is never a given. Now if you’ll excuse me, there’s an adorable little girl who just climbed into bed with me who needs some cuddles.