Respecting Your Energy Budget vs. Visiting the Lupus Loan Shark

By Margie Willis

Able-bodied people can afford to be reckless with their daily energy budgets. But if you have lupus, you can't get away with it. 

Let's say you and your husband are flying back from a vacation in the wilds of Morocco. You miss your connecting flight. Your luggage is lost. You managed to chase down an alternate flight but had to run the length of the airport with your carry-on. Finally, you get home after 23 hours of travel and frustration.

Your husband feels miserable, but after a really good night of sleep, he is recovered, fully functional, and ready to go to work. He was able to "get an energy loan from a conventional bank" and pay it back overnight at a reasonable rate. 

But … not you!  You, along with people who have multiple sclerosis, long Covid, and certain chronic rheumatological diseases, have to drag yourself down to the sketchy part of town and ask that merciless Lupus "Loan Shark" for a payday loan at a ridiculously high rate of interest. 

You are in a world of hurt. The cost for you is three or more days of forced couch potato duty, physical pain, and dense brain fog. You may not have the energy to do dishes, buy groceries, remember to take your pills, or even what you were saying. 

There's more. If you refuse to repay the loan shark, that is, you go to work anyway, when your husband does, the loan shark will send his goons to take a pound of flesh, in the form of a lupus flare or a worsening of your particular illness.  

Learning to Pace Yourself: A Powerful Wellness Strategy

What is the secret to avoiding debilitating fatigue and being forced to visit the Lupus Loan Shark? Learning the art of pacing yourself! It is a required course in order to be able to live our best lives with the cards we have been dealt. 

Family, friends, and colleagues won't understand, and we need to be OK with that. Lupus is an invisible illness, so a friend may say, "But you look fine." They won't understand that fatigue is different for us. We need to learn to champion for ourselves, even when others think we are whining, exaggerating, or gold-bricking. 

If we want to avoid the loan shark, it takes assertiveness, mindfulness, self-love, and strict adherence to our daily energy budgets. You may need to calculate how much energy you have used as the day goes by, because you may not feel very tired, even when you're about to "hit the energy wall." 

Pacing yourself takes methodical discipline and radical acceptance.

The moral of the story is, if I have four days to get a big job done, and I try to do it all on the first day, I will end up being debilitated for three days and failing to finish the job by the deadline. But if I do a measured amount of work each day, I can finish with a modicum of energy to spare. Pacing helps me get more done in the long run. 

Pacing Yourself After a Setback:

If you have a setback, like an illness or an operation, that forces you to be sedentary, you will have lost muscle and fitness. The effect is amplified as we age. Many of us were raised to "jump right back on the horse" — to push ourselves to the max; No pain, no gain! Right? Wrong! The arc of your recovery will be different from able-bodied people.

When you’re ready to start exercising after a long period of inactivity, start very slowly, but with persistence and determination. Whether it is doing your physical therapy, water exercise, or walking, start with 10 minutes of exercise DAILY. Even if it is just to walk around the block. As each week passes, increase by 5% to 20%, either in time or intensity.  

Four years ago, I got a real lesson in pacing my recovery after a tiny but painful fracture in the femur at the knee joint due to osteoporosis. I had to wear a knee brace and use a walker. Four days a week, I would swim for 10 minutes — just 10 minutes a day. The next week, I increased to 12 minutes a day. After that, I was only able to increase by 5% per week. But I had graduated from a walker to a cane. 

To encourage myself, I made a big calendar to put on my refrigerator door and gave myself gold stars and smiley-face stickers for each day I did my workout. It sounds silly, but it gave me the motivation I needed.

It seemed like a real pain in the neck to go to the trouble of getting to the pool, showering, and changing afterwards, for just a few minutes of swimming. But I was determined to rebuild my fitness. On days off, I did physical therapy exercises. After two months, I was doing 26 minutes of swimming and dispensed with the cane. By six months, I was doing 45 minutes a day. All that discipline and mindfulness paid off. 

Sometimes an event is worth paying the price. It is a matter of choice. Sometimes I'm having so much fun, I lose track of my energy budget.

No one does this perfectly.

It is a lesson I keep having to relearn.

Margie Willis

June 2025

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