Living with a chronic illness is often like riding a roller coaster. There are quick turns, loop-di-loops, and sudden drops, each of which can pull your stomach right up into your throat. On a roller coaster, you never know what will happen around the next turn.
Each day living with a chronic disease can be like the sudden turns on the roller coaster. You never know what truly will greet you until the day comes. There will be good day and bad days.
It’s okay to have a bad day.
This past week, my mother and I have been on vacation at a nearby resort. You may recall that my mother lives with a number of serious, chronic illnesses. She has good and bad days, as do I at times. I am her care partner.
On Monday, we made arrangements to enjoy an outdoor, poolside, barbecue lunch. Exhausted from traveling, we both sleep in that morning and lunch became our breakfast. As we approached the pool, my mother expressed that she wasn’t feeling too well.
“Maybe if I eat something, I’ll feel better,” she said.
I had to wait in a long line to collect our meals while she found a shady spot to wait. It wasn’t too terribly hot outside; in fact, it was a beautiful day, warm with a gentle breeze. Once I finally got our food, we began to eat.
I was hungry, but my mom only ate a few bites. She was not feeling well at all. Whether it was the sun, the heat, the noise as the DJ began, the travel days, or lack of a good night’s sleep, the cause doesn’t matter as much as how we handled the situation.
Dealing with the bad day.
I helped my mom get back into our unit. She laid down on the couch and soon fell asleep. I put away the uneaten barbecue sandwich and settled in to check emails and write a bit. Our plans to go shopping were set aside.
My mom was having a bad day. It is how we handled that day which helped us both to have a good day on Tuesday. I will continue to say “we” because if she has a bad day, it affects both of us, just as my bad days affect my mom and my husband who help to take care of me.
What did we do, or not do, that made a difference?
- We didn’t try to “snap out of it” or push through the tiredness and overall sick feeling. We honored the icky feelings and changed our expectations of the day accordingly.
- We didn’t get upset because I had just bought an uneaten lunch (which did get finished eventually.)
- We made sure that my mother had what she wanted and needed within reach to make her feel more comfortable.
- We didn’t say, “woe is me,” or made a big deal out of the bad day. Instead, my mom allowed her body what it needed—another five hours of sleep, air conditioning, comfort—and I gave her time and space to do so.
By being patient and kind, my mother says that I was able to help her slow down the roller coaster and bring it to a gentle stop. I went out shopping alone and prepared a simple meal for supper that evening. With the extra rest, she and I both were in better shape to continue with our planned vacation activities on Tuesday.
When you care for someone who is having a bad day, know that it’s okay. Give them space, emotionally and physically, to have that bad day. Be flexible, patient, and kind. Honoring the bad days will allow the good days to blossom.
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Lisa Emrich is a patient advocate, accomplished speaker, author of the award-winning blog Brass and Ivory: Life with MS and RA, and founder of the Carnival of MS Bloggers. Lisa uses her experience to educate patients, raise disease awareness, encourage self-advocacy, and support patient-centered research. Lisa frequently works with non-profit organizations and has brought the patient voice to health care conferences and meetings worldwide. Follow Lisa on Facebook, Twitter, and Pinterest.