Some days I’m so sick that I don’t have the energy to exercise the dog, prepare food, or spend time with my family. Even reading or watching TV feels like too much. I spend hours in bed in my shade darkened room, and when I’m up I stumble around in a stupor, my body a jumble of pain and tenderness and my head filled with fog and misery. I call these days Lost Days. They’re like nothing days, like days that don’t really exist. Pointless. Most of the time I am able to keep a perspective on my illness and find things to feel grateful for. But on Lost Days all I want to do is disappear. Sometimes I cry. Mostly I wait for the day to be over and hope that things turn around by the next morning.
When I have too many Lost Days in a row I start to feel like a waste of space. I have a hard time remembering my value. It seems that I contribute nothing, that I have no purpose, that I am useless. I worry that my life will pass me by in a blur of illness without allowing me to make any sort of meaningful impact. I have to remind myself that my value doesn’t lie in what I do but in who I am. I tell myself this, but I don’t always believe it.
Today, after several consecutive Lost Days I woke up feeling GOOD! I showered (Hallelujah!) and got dressed in real clothes. I put on makeup and jewelry. I brought the kids to camp and Riley to the groomer. I worked on some new blog posts. I spent time with a friend in the sunshine while our dogs played. I found myself smiling and couldn’t stop. There was a spring in my step. I let myself fully enjoy this respite from illness, but I opted not to overdo it by taking a hike or trying to catch up on a million forgotten responsibilities. I took ZERO naps! I can’t even remember the last time that happened. Who knows what tomorrow will bring? I could end up back in bed. All I have is now. And right now I’m HAPPY.
So how do I handle the ups and downs? How do I make peace with the capriciousness of my illness? One thing I do is try to appreciate every moment of my good days, from having clear thoughts and a positive state of mind to enjoying a bit more energy and fewer aches and pains. On good days I take advantage of being able to exercise Riley, take a nice walk, get together with or have a long phone chat with a friend, play a game with my kids or have dinner out with Harlan. The good days shore me up so that I am better able to handle the hard days. It also helps to remember that the hard days always end. The closing of each hard day marks the possibility of a better day to come.
I recently came upon some words of wisdom from my favorite blogger Glennon Doyle. I have a feeling I’ll return to them again and again:
“Know that there is enough. Know that you are enough. Know that you have enough. Enough time, enough talent, enough love. You can’t miss your boat. It’s yours. It stays docked till you’re ready. The only boat you can miss is someone else’s. Let them have theirs while you wait for yours.”
I find this quite comforting. I love the idea that my boat will wait for me; that I have enough time to make an impact. I feel calmer while reading these words, more accepting, patient. I know I was put on this earth for a reason. And as hard as it is, I know my health journey is wrapped up in my purpose. The best way for me to live my purpose is to be present for the journey and have faith that there is meaning in the unfolding of my life. I believe, I believe, I believe.
And I try to remember, as my wise older brother Danny once said, that “Things turn out best for those who make the best of how things turn out.”