Having chronic illness is a lot like being on a hamster wheel. We’re going-going-going! We’re keeping up! Woo-hoo! Check us out! And then . . . WHOOPS! We get thrown off the wheel. We have to lay in those damn wood shavings for a bit and then, eventually, we have to get back up. Getting back up is harder than it looks. Because it actually doesn’t look like much of anything. It looks like laying low. It looks like starting from the very beginning . . . again. And most of all it looks like teeny tiny hamster-sized steps.
I fell off the wheel about a week ago. I’m fatigued beyond reason. The pain is ramped up. But those two things I can deal with. It’s this last thing that’s keeping me down. My feet hurt. Like really hurt. Just walking through Whole Foods to get five items is too much. Walking the dog to the end of the block is beyond my ability. Standing and talking to another parent at school pick-up is torture.
And do you know what caused this mess? Going to a craft store and standing for too long. A CRAFT STORE. This is not a cool story. It’s not a hey-I-apprehended-a-purse-snatcher-over-the-weekend story. It’s not even an I-ran-a-10k-this-weekend story. It’s a lame story. I mean, if I had been horribly burned by a glue gun or if a shelf of early Christmas decorations had fallen on me, that would be something. But no. My story is that I was at a craft store, you know, standing still.
All of last school year and through the summer I dealt with worse foot pain that this. But then I started acupuncture and it got almost completely better. And for some reason, this getting better and then getting worse has thrown me off the wheel. It’s thrown me off hard. Getting better-ish and then getting worse-ish over and over and over again is what chronic illness is all about. And I thought I’d made my peace with it. But apparently my feet haven’t.
I’m trying to remember all the things that help me get back on the wheel of relative health. Or at least of relative peace in my mind and heart. So here is what I know about surviving the worse-ish part of chronic illness:
1. Keep any health related appointments.
It’s tempting to hole up and stay buried under a blanket with a bag of chocolate chips. But if there’s any possible way to keep my appointments I do it. I may show up in sweat pants with unwashed hair, but I show up. Yesterday I went to acupuncture and today I am going to therapy. HA! I am SO winning this one!
Check! Today I’ve already meditated once. Lately though I’ve been meditating twice a day. I always use guided meditations because my mind is too jumpy to be left on it’s own. Meditating is soothing and lets me have a moment of peace in my body. And, frankly, in times like this, it is something to do. I can only read or watch tv or do anything that involves standing (i.e.- cooking) for so long before my body’s had enough.
3. Do something nice for someone else.
It’s good for me to get outside my own head and think about someone else. And actually doing something for someone else is not only a distraction, but it makes me feel useful. I made chocolate covered strawberries for the neighbor . . . and yes, I totally licked the bowl. Gold star for me!
4. Remember that I am like the weather.
This means remembering that my pain, my fatigue, my anger are like the weather — if I wait just a minute it will change. The shift may be subtle. But what I’m feeling now is only that – now. Knowing that this isn’t forever is a huge relief. That’s right, baby! I’m like a hurricane and a spring day all in one!
5. Look at my thoughts, not from them.
I’m trying really hard to observe my thoughts from the shore instead of putting myself right in the middle of the class five thought rapids. This looks like me going, “Hey, look! Here comes a thought! I’m feeling anger at being physically limited and in pain. What an interesting thought. Let me watch it float on down the river” vs. “OHMYGOD I AM TOTALLY DROWNING IN PAIN AND ANGER AND I CAN’T A BREATHE AND I AM GOING TO DIE HERE IN THIS SUPER PAINFUL AND SCARY MOMENT!” I get an A for effort on this one. So that translates to . . . a half a point?
Writing every day makes me feel useful. Working on projects makes me feel connected to a larger timeline. It lets me leave my body and go to a place other than pain. And hey, look! I’m writing now! Another point for me!
7. Have something good to read.
Please. I always have something good to read. It’s an escape hatch.
8. Have something good to watch.
Okay, so I’m struggling with this one. I need a new show. I tried to watch the free episode of Homeland last night but then I realized that I’m behind by at least one season. *sigh*
9. Eat healthily.
I’m all over this one! Stuffed zucchini and peppers has already been made and it’s in the fridge waiting to be heated up for tonight! I. Am. Awesome.
I feel better when I reach out to friends and family. A phone call, an email, whatever. Anything to keep my world from getting too small. So if I call you today, please pick up!
So, basically, I’m winning. Do you hear that, chronic illness??? I. Am. Winning. I’m doing what I know I need to do. And I guarantee it’s WAY harder than it looks. But this how I’m fighting. This is how I am strong. See you back on the wheel, baby!
What do you do when you’re feeling worse-ish?