The RA Battery Drain
I’ve been working to restructure the expectations I set for myself. Living with rheumatoid arthritis/rheumatoid disease (RA/RD) means that pain and fatigue often get in the way of my “productivity.” I’m doing all that I know to do to decrease the symptoms of this disease, and being frustrated with myself for the impact the remaining symptoms have on my life is counterproductive. Negative self-talk about what I “should” be able to accomplish doesn’t enable me to get more done; the only difference it makes is feeling worse about myself. Therefore, I’m making a conscious effort to change the messages I give myself.
Instead of thinking, “I should get up off the couch and clean the house” I’m trying to shift to “I successfully made it through a work day and now my body needs some couch time.” I’m swapping “I have to get all these errands done today” for “Let me look at my errand list and see what absolutely needs to be done today and which ones can wait a few days.” Instead of “I didn’t get half the things on my to-do list done this weekend” I’m working to think “I got half the things on my to-do list accomplished this weekend!” and (gently) pat myself on the back for it.
Changing my thought patterns takes a lot of effort.
Just as with starting a new workout or a healthier diet, some days are easier than others and slip ups do occur. However, the more I catch myself in negative thought patterns and decide instead to give myself a break, the easier it is to give myself some grace.
For instance, recently I experienced what I’ve coined as an “activity hangover.” On a Saturday evening my family and I participated in a really fun community event that involved a lot of walking and being on my feet for about three hours. The next day I was exhausted. I had a long to-do list for the weekend, and I had planned to tackle as much of it as possible. However, the activity from the night before left me with the telltale signs of an activity hangover: increased fatigue, inflammation, and mild achiness throughout my body. None of my symptoms were at full-on flare level, but I was feeling worse than on a standard day.
Instead of feeling frustrated with myself and trying to push through, I thought, “Last night was really fun and was a special time for my family. It was worth it, but it did take a toll on my body, and right now I just need to rest.” So instead of trying to force myself to deal with my to-do list, after breakfast I blew up our air mattress, piled up pillows, and put on a movie for the kids while I dozed through it. It was just what I needed.
My energy level is like a battery.
Later that evening, as I was plugging in my smartphone to charge overnight, it occurred to me that my energy level is like a battery. Daily activities decrease my “charge,” requiring me to recharge overnight with sleep. However, just as increased phone use requires more frequent charges, so too does increased physical activity for my body. Being on my feet for three hours at a social event on a Saturday evening is similar to streaming a video or downloading data: it requires more energy than standard daily activities.
While I can wish that my phone could stay charged far longer than it does, wishing doesn’t make it so. Instead, I plan ahead. If I’m going on a trip and want to stream a movie while I’m gone, I bring my backup charger so that I can give my phone or tablet a boost if it starts running low. Similarly, if I’m participating in an activity that requires a lot of my energy, it is going to run my battery down more than a typical day, and I have to give it a boost with a nap or some downtime.
Thinking of my energy level as a battery that can be depleted is helpful for me, as it makes it easier not to judge myself. I can get frustrated with RA/RD for giving me shorter battery life, but I’m not frustrated with myself or viewing the situation as a personal failing. Until engineers figure out a way to develop a smartphone with a significantly longer battery life, I’m going to have to plug it in every night and sometimes during the day. Until researchers figure out a cure for RA/RD, I’m going to have to sleep a minimum of eight hours to feel rested and will sometimes need to nap during the day in order to function. Fighting that reality is futile, whereas planning for it can be very helpful.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?