The Real Work of RA: Slaying Demons
In order to live well with any chronic disease, you have to actively work with it, and the key word in this sentence is WORK! My part-time job is JRA, and sometimes I’m called in for extra hours. Just like any job, the extra hours are usually required when I have something really fun planned. Take today for instance- halfway through Labor Day weekend and I knew I would be working at resting because if I didn’t, tomorrow I will be moving on fumes because my energy is so low. I know what I’m dealing with is what my fellow rheumatoidarthritis.net writer Tamara recently wrote about in her article, The Travel Hangover. I’ve been pushing hard because I’m moving to another town, I’ve been asking a lot of my body, and I’m experiencing an activity hangover.
An activity hangover = flu or flare
An activity hangover is much like the flu, or a flare-up, and I get them more often at certain times of the year. Summer, when I’m wanting to be exploring the Colorado mountains, and during the holidays, when I’m wanting to be at family gatherings. Both of these things take their toll, especially since I’m someone who hates being left out of anything. And for years, along with the activity hangover, came the doldrums. As my body crashed, so did my thoughts. I’d spend my time, “resting,” fuming at my body, upset with it and with how it interferes with my life. I’d bemoan the fact that I was in the prime of my life and I couldn’t even make it through a weekend of fun without suffering for it.
You can imagine how well that resting actually went. It turned me into a resentful, wound-up, mess. My body would eventually feel better but my mind just kept working itself up. After years of doing this, I realized that if I continued beating myself up every time my body wasn't doing well, the disease was getting the best of me. Enough was enough, I needed to figure out a new way of doing things.
The demons we fight
Every one of us who lives with RA will have demons to deal with along with swollen joints and severe pain/fatigue. My demons come out when my body is in an activity hangover. It’s the time I sit and stew over the losses I’ve suffered along with the pain. The experiences I miss out on, the opportunities I have to say no to, the lack of the children of my own, all run through my mind as I stare at my offending joints. For me, altering my diet or doing my daily exercises aren’t hard, but resting is. I come from a family of energizer bunnies, hard workers, and high performers. The idea of sitting down with a pot of tea and watching a movie in the afternoon is practically slanderous and makes me feel like a lazy bum, especially if I’m watching people buzz with activity around me.
The key is not to compare
Comparing myself to an impossible self-standard is like shooting myself in the foot. I knew this, and I knew that I needed a new standard with which to compare. My husband lives with chronic pain as well, and for the past five years, I’ve had a resting buddy. This has helped my state of mind quite a bit because when he joins me I’m no longer left out. But I can’t always ask someone else to sit with me when I’m in rest mode.
Learning how to truly rest
So, I decided to work harder at learning how to truly rest. For me, life changes first happen with an attitude shift. I needed to shift away from thinking about all of the things I couldn’t do, and instead shift into enjoying the rest my body requires. It’s taken a while to get there, especially since resting during a flare can be laughable if it includes increased pain. But over time I’ve realized that there are books I can read, crafts I can do, movies to watch, friends to talk to, and meditation music to enjoy.
Now, whenever I hear about an interesting book or movie I make a note. I save them for activity hangover days so I’ll actually have something to look forward to. And it’s working. Today, I’m drinking tea, writing, and looking forward to lying down and listening to the audiobook I picked out last week. My activity hangover day can actually be enjoyable. I’m slaying my dragon. I know that by improving my emotional health around my JRA, I’m also giving myself a better life even of the JRA symptoms never improve. And having done the work to tame this dragon, I will be better able to do it the next time one shows up.
When was your last flare?