I just finished up a two week pain med journal for my PCP and MTM to review between appointments. The point of the journal was to see how I was using my medications -OTC and Rx- and figure out if there was a way to re-arrange them a bit to better control my pain.
This isn’t the first time I have tracked my daily activities, medications, time outs, meals, how many times I breath in and out, etc. Sometimes I track one thing, sometimes I track all of them, sometimes I just pick two out of a hat and go with those for a few weeks. The factors differ, but the end goal is always the same; how can we best manage the amount of daily pain.
Every time I do one of these journal bits I secretly hope that my team will see how responsible I am, how hard I am working at using every tool at my disposal to cope and control my pain. And every time I fill one out I find myself wondering how I could best show them that on paper. This last time around was no different. I had just finished making my spreadsheets all pretty and wishing they would accurately express my efforts when my husband asked me if I wanted to take A to the water park for her birthday when it hit me: a trip to the water park is exactly what has been missing from these journals.
Yep. You read that right. No, I am not nuts. Check this out.
When your friend asks you if you want to head to the water park your plan of attack is something along the lines of going to the beach. Towel, sunscreen (need that SPF baby!), snacks, water, money for unhealthy snacks, and an adrenaline rush to go on the big slide. Okay, maybe that last bit is just me, but you get my point.
When The Hubs asked me if I wanted to take A to Wild Mountain for her birthday, my twisted mind did something like this.
Well……..I guess…..NO…….But the kids would have so much fun!…….There’s so many stairs….I could probably do a few hours, that would be alright…….Are you nuts?! It’s a 1.5 hour drive to just GET there…..I don’t have to go on any slides, I could just hang out at the picnic spot and in the lazy river……..But I WANNA go on the slides (stomps imaginary foot)….Okay, let’s go! This is gonna be fun!…….I’m going to have to stand for 15 minutes just to ride a slide for 30 seconds…..oh geez……but I WANNA go….
Anyway, you get the point. Ultimately a trip to Wild Mountain would look something like pre-medicating before we sit in the car for 1.5 hours one way while I sit on a heated car seat with instant ice packs in our picnic bag. Once we get there and get settled in our spot I would hit the lazy river to un-crunch my back and pelvis from the car while The Hubs and the kiddos hit the slides. I would meet them later, hit a slide or two and then head back to the picnic spot to lay down to recover from standing, walking, stair climbing, and screaming my head off on the way down.
Yes, I would enjoy it. I would read my book while I soaked up the sun in the grass. I would smile and wave and take pictures of the kids and The Hubs screaming and cheering on the slides. Rhino and I would have fun on the lazy river just taking it easy. It would be a trip to Wild Mountain with my family because we rode in the car together on the way there and on the way home. It would be a day at the water park for those 30 minutes I rode a few water slides before I had to take a break. Mostly though, it would be a trip to a place to read a book or lay in the sun while my family went to the water park.
These are the things that just don’t get communicated in a pain or a med journal. This is exactly what is missing every time I try to show my team how I manage my pain. Yes, I could say fuck it and just go nuts. Climb every staircase and ride every slide. Twice. I could drive the Go-Karts and play volleyball and I could medicate myself to the point where it doesn’t matter what I do. I could, but I don’t. I won’t.
I won’t because that is not what pain management is. It doesn’t mean stuff pills in your face and do whatever you want. Pain management is exactly what is sounds like. Management. Everything is a choice. Everything is a “this or that” situation. Everything.
A trip to the grocery store is strategically placed between yoga and dinner with enough recovery time in between to watch Ellen or Jimmy Fallon reruns. Every birthday party invitation is weighed against what things need to be done the day before and after the party date. It’s all a big Tetris board with pieces that don’t always fit together. Let’s face it, Tetris is easier to master than Spoonie life 6 out of 7 days a week.
Truthfully, I don’t say this to whine, but to express to my peoples that pain management goes so far beyond what medications I swallow. I want to find a way to really help people who are both living with chronic pain and those who are close to people living with chronic pain understand why we make the decisions we do. Why it seems like we can do something one day, but not the next. I want to show my care team what a spreadsheet obviously cannot.
I want to help you understand why, for just a minute, I look like a deer caught in the headlights when you ask “Should we go to Wild Mountain?”