How Momentum Helps Me Fight Lupus Fatigue

"I'm tired" is a phrase my husband and kids hear from me almost daily. I'm saddened that my illnesses have caused my family to expect my tiredness more often than not. However, my husband recently brought up an interesting facet of my lupus fatigue: momentum.

He asked me to try to do one more errand with him, after I expressed that I felt tired and done for the day, because he explained that my momentum is often helpful in providing much-needed energy.

How does momentum impact my lupus fatigue?

I was surprised to hear my husband explain his observations. In a way, he was calling my energy levels stretchable. He pointed out that it’s very rare for me to recover energy after I stop to rest, but it’s easier for me to keep going before resting.

Reluctantly, I saw some truth in his argument. So, on that day, I stayed the course to attempt the extra errand before going home to rest and things worked out just fine.

Some people with chronic illness like to use the spoon theory or a battery analogy to describe their energy levels. I guess I have a new perspective after continuing to try out my husband’s “momentum theory” over the past few months. Despite my skepticism, it turned out to be true that I almost always crash for the day regardless of whether I start resting when my battery is at 5% or 50%. Or even 75%.

It’s weird, and a bit counterintuitive, to see my energy levels as a fluid-like entity. I’ve kept going with the momentum of my days to accomplish things instead of starting and stopping, which is what a lot of people with lupus do when they are pacing.

I find it frustrating, however, that I can’t successfully use pacing to replenish my energy levels; I think my life would be better overall if pacing worked for me.

What is pacing?

Pacing is a common strategy in the chronic illness world where people manage their energy levels so that, ideally, they can space out their limited energy and try not to run out completely or get so exhausted that it causes an increase in their disease symptoms.

This might look like working for 2 hours, stopping for 1, working for 1 more hour but perhaps at a lighter level, and then resting again.

While the basic premise of pacing is modifying our behavior to try and meet our physical needs, especially for people with lupus who likely have less energy overall, I have observed that pacing is an incongruent experience for many people. Some do well with it and others don't. Some only do well with it sometimes, while others almost always find pacing helpful. It can depend on the type of activity as well.

Pacing looks wildly different for different people with lupus. While some people start and go all day long, others are only able to work a half-day and then rest. But, if pacing is done well, then it can help people achieve a better quality of life.

Why isn’t pacing more useful for me?

To be honest, I have no idea. Am I not in tune with my body well enough to pace effectively? Maybe. Is it psychological? I don’t think so. Is there an element of laziness to my need to rest? I doubt it.

I used to find pacing more helpful when my kids were young babies. Maybe back then pacing worked because there was more true rest available to me throughout the day. Babies often take several naps, so I could sleep as well. My kids don’t nap anymore, so my days feel a lot more like a marathon than a relay race.

I have had many days where I pick-up my two-year-old from preschool and take a little TV break before we go get my five-year-old from the bus stop. Occasionally I fall asleep and/or rest deeply, and, on those days, I find it almost impossible to get up. My mind is trying – often talking to my two-year-old to tell him to wait for me – but my body literally won’t cooperate for several minutes.

These kinds of experiences, where I rest in between light errands and have extreme difficulty returning to activity, make me feel more certain this is a fatigue issue that pacing can't solve for me. Even though I’ve treated my sleep apnea, began exercising more, started eating better (most of the time), nothing has provided me with this near-mystical ability to rest and recover.

I have to remind myself that much of my lupus fatigue is simply beyond my control and try to adapt to my situation as best I can. My body is obviously getting very tired; it's likely fighting a constant internal battle on the inside due to my lupus. There are many days that I have to push through the fatigue, sometimes leveraging momentum, to keep up with my busy life and family. However, I try to balance this with rest and practice self-care as much as I can.

Do you start and stop often throughout your day? Or it is easier for you to keep going tackle several things in a row?