RA and Reasonable Expectations

“Pace yourself.”

Those two simple words are ubiquitous among people who live with rheumatoid disease (arthritis). On the surface, they’re good advice. Since the major symptoms of RD are fatigue, pain, and malaise, many of us start out each busy day with a built-in oomph-deficit, so it makes perfect sense to try to control how we expend what energy we have.

Pacing: easier said than done

But the fact is, pacing is hard. For many of us, the day starts with a rude alarm early in the morning, signaling the beginning of a literal marathon of activity. Although I’m retired now, I remember those workdays, floating in the dim, golden silence after fumbling the alarm clock off, carefully assessing how my body felt while I mentally girded my loins to start the day.

I knew that moving might result in instant, stabbing joint pain, that simply sitting up in bed and putting my feet on the floor might take up a great deal of oomph. How much I started with depended on how long and how well I’d slept, what I’d done the day or even the week before, and even how the meds I took to treat my RA affected my body (I’m looking at you, methotrexate!).

My mental/emotional health affected my precious store of energy, too. They still do, today. Frustration, sadness, anger, and feeling helpless under the heavy fact of an incurable, painful disease are all serious energy sappers.

Tired before even starting

One of my first RD symptoms was painful feet in the morning. I’d get up from bed and they’d feel like I’d been up on them all night, working an 8-hour shift at the counter of some busy fast-food place.

Each step away from the bed required gritted teeth. I’d hobble to the kitchen to make coffee. Then I’d wake my elementary-school-aged daughter and take a shower. By the time I was groomed and dressed, made breakfast for the kiddo, got her dressed, and hustled us both out the door for work and school, I was already exhausted from the pain. But not doing it wasn’t an option. I was a mom with a full-time job that I depended on for a living. Back then, no one ever mentioned “pacing” to me. I’d have laughed at them if they did.

Pacing feels like a lovely fantasy

Life doesn’t slow down just because we want it to. Even with RD, we must work, grocery shop, clean up around the place, interact with friends and family, and all the other myriad things expected of us each day. I don’t know about you, but the world doesn’t care whether my RD is flaring, or if I’m fatigued/feeling cruddy/in pain.

Back in the day, my employer paid me to show up and do the job I’d agreed to do, so somehow, I did. Today, I’m my mom’s caretaker. Her needs — nutritious meals, a trip to the doctor, a walk in the park, lessons on how to use her smartphone — are as important as my own. I take care of her whether I feel great or not because hey, no one else is going to do it. “Pacing”— metering out expenditures of energy to conserve and make it last — is mostly a lovely fantasy.

Reasonable expectations

My guess is that it’s just the same for you. So, what’s the answer? Reasonable expectations.

Take advantage of yourself

During more than 30 years of living with RD, I’ve learned to seize my moments. I make a real effort to use them to my advantage. That is, I rest. I use the occasional free minutes to slow myself way down, to concentrate on my breathing, nice and slow: in, out. In, out. In, out. It’s a meditation, a Zen thing. Or maybe I’ll dial up a little headphone music on my smartphone and just listen for five minutes. Or I’ll read a couple of pages of the book I’ve been working my way through. The point is to decompress.

If I’ve got some actual time, maybe I’ll take a nap. Just 20 minutes of light sleep is enough to give me a small burst of extra energy, just enough to get me through until the day is over.

Does all that count as “pacing yourself?” I don’t know, but it works for me.

Forgive yourself

Finally, don’t beat yourself up if “pacing yourself” isn’t working. Listen to your body. Say “no” to add-on activities when you’re tired or in pain, or when you know you’ve already taken on too much. Forgive yourself for not always being able to inhabit your Superwoman or Superman persona. You're human.

Above all, take several deep breaths and be kind to yourself. Do that every single time you think of it. In my experience, it works a lot better than “pacing,” anyway.

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