What makes chronic disease so challenging is that we’re never 100 percent. Our great days are different from yours; I promise you that. I think many of those who love us can misunderstand what a great day means to us, and sometimes feelings can get hurt. So let me share my parameters with you, and then maybe you can share yours or use this for conversations with your doctors, friends and family.
I have a baseline I consider my normal. I accept that my baseline is not perfect. It comes with serious and often excruciating pain and fatigue. My symptoms are managed with medicines that we dial up and down, depending on the severity of my symptoms. Within that baseline I have some great days, some good days and some bad days. This is my life and as a family we live in the baseline; we accept it and made peace with it.
So I have bad days in my baseline, too. Having a bad day means I stay in bed, watch TV and rest. On good days, I run errands, make dinner for the family and go to bed happy at 8 p.m. feeling satisfied and successful. A great day is a good day with a movie or the beach tossed in. All of these days are still filled with pain and discomfort. The pain is tolerated and managed. I can guarantee you that if I have a great day, the next day is a PJ or sweats day because I need to take it easy. It’s a dance. It takes practice.
On the scale of 1 to 10, I will never have a day that’s a 10. My body is not in the 10-generating business. For me, a 10-worthy day would be a day without pain, and I’d have the energy to do a full day of work and activities.
I want 7’s and would love two hours of an 8. I accept and celebrate a few hours of a 7 or an 8 on any given day. So that’s my goal. I try to make the best use of the energy and pain management on a given day. I need to take a siesta every day if I want to make it to dinner. That means I need to lie down on my bed for at least an hour or maybe two.
This is my life, my normal and I’m happy in this place. I take great comfort in this baseline. I recognize to many that it may seem limited, but I’m happy here. I don’t need much other than to enjoy and bask in the great days I get to spend with my family and friends together.
My baseline changed in May after a simple case of strep throat developed after my daughter, Norah, went on a third-grade field trip. (Let me be clear: I would do that field trip over and over again because third-grade field trips are amazing.) I’ve been battling for months, and in the last week, well, my body decided it was time to crumble. When my thoracic pain was too intense and I couldn’t find a break from the pain, we moved out of our baseline into messy territory, which is a flare.
A flare for me is when the pain and inflammation is widespread, systematic and unrelenting.I won’t call a flare a flare until it’s kept me in bed a solid three or four days. In the past, a flare also required extended stays in hospital. Now thanks to my amazing medical team, most of my care can be done as an outpatient treatment, and I can sleep in my own bed. When my lungs and heart get inflamed, I like to sit with my back up against a wall. It makes it easier for me to breathe somehow. If I lean forward, the pain is excruciating, and if I sit perfectly straight and don’t move, it’s tolerable.
The hardest part of managing a chronic disease is you never know how long a flare will overstay its “unwelcome.” The other problem with a flare is that if you do too much (like I did this week), it just sets you back even further from returning to you baseline. And so, planning becomes challenging. Does your spouse cancel his business trip? Do you call someone to stay with you? Do you line up a contingency on top of the contingency? The mental planning of a chronic disease is exhausting by itself, then you throw a Type A personality on top and it’s a hot mess.
I’m writing this for all the other pilgrims with chronic diseases who may not have the support and love that I do. Many of our loved ones are so thoughtful with dinners, carpools and visits. If you’re a loved one of someone with chronic illness, here are some things I think you should keep in mind:
Don’t ask if we’re feeling better yet. Instead, ask us, “Is today a good day?” Sometimes nothing hurts more than being reminded you “were” doing well. And whatever you do, don’t ask us if we overdid it to get here. That doesn’t help. We all want the same thing: to be one day closer to our baseline. Please be patient with us.
Tell your loved one that you love them and that you’re praying and thinking of them.
Make us laugh. Nothing makes me happier than to hear stupid stories when I’m in bed. I think trashy gossip magazines and mindless books are wonderful.
Spend time with us. Just last night, my husband, Jeff, took me in my PJs to the beach. I just needed to look at the ocean. That was perfection. I watched the kids pick up shells, and I could see, smell and taste the ocean from the passenger seat. So offer to drive the getaway car for a friend or offer your own sofa. After being stuck in your house forever, sometimes another venue is delightful.
Today, I’m one step closer to my baseline, and I’m humbled and grateful for all the love, prayers and notes from my loved ones.
Follow this journey on Pilgrimage Gal.
The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.