The idea of pacing isn't a topic that makes most people excited. Most people don't like to be told that they can't accomplish something as quickly as they want to. The word "no" is one that we develop enmity with from our toddler years. The idea of accepting any kind of limits on our abilities is difficult for everyone.
Eventually, however, everyone will reach some kind of limit in life. Whether in time, athletic performance, academic achievements, the glass ceiling at work, or a basic physical need for food/water/sleep, we all have limits. This is true regardless of if you have a chronic illness or not. The better question is not if we have limits, but what each of our individual limits are. If we know that, then we are better able to make choices to work within our limits, compensate for our shortcomings and eventually increase the limit of what we can do.
Let's take a look at:
The Rollercoaster Rider: Understanding the Problem
When your energy supply is limited by pain or chronic fatigue, it can be challenging to get everything done in life. It is a familiar story to hear patients say "I had a good day and so, ______________"
The blank space is often filled to the brim with a slew of activity. They work overtime hours, clean the whole house, do all the Christmas shopping, and/or go run errands all around town. Unfortunately, the next part of the story is fairly predictable. "Then I was so tired and in so much pain that I spent the next day(s) in bed and couldn't do anything."
This is one roller coaster you don't want to be on. People go up the hill, just to go plummeting down the slope and as soon as they recover, the cycle continues. In light of the fact they haven't been able to get anything done for the past few days, when a good day comes around again, they seize the opportunity to catch up on what they've missed.
This mentality makes sense when you live in it day to day. Understandably, life doesn't stop, and everyone has things they need and want to accomplish. When we take a moment to zoom out and observe from a bird's eye view, however, the dysfunction is obvious.
We would never apply this logic to a diabetic trying to manage their blood sugar. No one would say it's healthy for a diabetic to eat an entire cake, and then not eat for three days. The goal is to maintain a fairly steady blood sugar by eating a balanced diet of multiple small meals a day.
Growing Grass: Pacing for Success
When we apply this concept to physical activity, it is a tough sell for people with chronic pain and fatigue. They are often fearful that if they don't take advantage of the good day they will lose their opportunity. In reality, if they pace themselves to do smaller amounts of activity each day, they will typically find they start to have more good days. Often, they are able to accomplish the same number of tasks over multiple days that they were previously cramming into one day.
Exercise and activity are a lot like watering when trying to grow grass. If a person throws grass seed down on a dirt lot and never waters the grass, it probably won't grow well. On the flip side, if they flood their lawn with water, the grass seed will wash out into the street. They'll end up with a mud pit and will have to let it dry out for a couple of days before they can put down new grass seed and try again.
The secret to growing grass is patience. You water it for a few minutes each day or sometimes twice a day, in the morning and the evening. While it is slow going at first, in a few weeks, the grass will start to grow. After 4-6 weeks, your grass will be full-grown and tall enough to withstand a flood when it comes. There will come a day when you are able to manage a busy day filled with activity without being wiped out and having to start over.
Clearing Hurdles: Addressing the Elephant in the Room
It is incredibly difficult to be patient when a person struggles with chronic pain or fatigue. It is true that life does not stop. Taking 4-6 weeks to invest in slowly increasing your activity tolerance will mean saying no to some activities in the short-term.
The goal, however, is that you are making an investment in the long-term. It's just like setting aside money to save for retirement, a vacation, or a home remodel. A person sacrifices some things in the present, to attain a larger goal in the future.
Physical therapy, losing weight, and other lifestyle changes are similar. It often takes 4-6 weeks to really see change. As much as we love the idea of a magic pill, or a winning lottery ticket, they generally don't exist and aren't good for us anyways.
Unfortunately, we know that the "get rich quick" schemes in life rarely end well. Statistics say that the majority of lottery winners end up bankrupt. The pain medications that work quickly in 20-30 minutes, often wears off in a matter of hours. Even if the medication works in the short-term, many medications have potential risks and negative side effects.
The long-term fixes in life that last, rarely work quickly. The timeless children's stories like the tortoise and the hare generally prove themselves true. The slow and steady person wins the race. When we take it slow and divide big tasks into manageable pieces we are more likely to be successful. History is filled with sayings such as "How do you eat an elephant? One bite at a time."
Mountain Climbers: Striving for Progress, Not Perfection
The goal with pacing activity is to be a mountain climber, not a roller coaster rider. Ideally, we want to lay a foundation that we can stand on and take the next step up the mountain. It's true that climbing a mountain sometimes involves some ups and downs, and isn't a straight path to the top. As you start trying to make wise choices about pacing your activity level, there are bound to be a few missteps.
To keep climbing the mountain, you may have to continually remind yourself to focus on progress rather than perfection. While we often use phrases like "two steps forward and one step back" to express our frustration at the obstacles in life, in the end, you still took one step forward.
While climbing the mountain can be slow, there are several things that can help you to keep your eyes on the prize. Motivation and gratitude are key factors to success.
Many people find it helpful to know their "why". Understanding your motivation can give you something to refer back to and lean on when times are tough. Keeping a meaningful goal in mind can help us handle setbacks better. A technique called motivational interviewing has recently gained popularity in medicine to help patients with making big lifestyle changes like quitting smoking and losing weight. (Coming soon, See: Making Changes that Stick)
Knowing your "why" can also help make it easier to say no to using our energy on the things that don't matter to us most. Let's say your dream is to go on a vacation to Italy. If you're trying not to spend so much money eating out so you can save for your trip, putting a picture of a beach in Italy as the home screen on your phone may make you think twice before you call in your to-go order for take-out.
Gratitude is another key factor to help you climb the mountain towards your goals. When a person is hiking up a mountain and gets tired, they often stop and turn around to look at the view. Taking time to look back and see how far you've come can encourage you to keep going.
When living with chronic illness, it is easy to focus on the negative things that your illness prevents you from doing. While it is ok to grieve the negative ways that an illness impacts your life, taking time to appreciate positive things in your life can help. It can be as simple as appreciating a new pair of cozy socks, or the taste of a piece of chocolate.
If you're ready to confront and reframe some of the losses from your illness, targeted gratitude can help reframe negative things into more neutral ones. For example, a person who suffers from chronic pain, might take time to appreciate the good things about having pain. If we truly evaluate the opposite claim, a person who doesn't feel pain is actually at a huge disadvantage. Congenital Insensitivity to Pain is a real condition some people are born with. Other people lose their ability to feel pain (or anything at all) in certain parts of their bodies from spinal cord injuries, or diseases like leprosy. Philip Yancey was so moved by his experiences working with people who had leprosy that he wrote an entire book called "The Gift of Pain". (Coming soon, See: Why Pain is a Good Thing)
A final suggestion for how to deal with setbacks as you climb the mountain is to learn from your mistakes. For people with chronic pain and fatigue, one of the most common helpful metaphors is learning to count your spoons.
Pacing Activity: Spending Your Spoons
Spoon Theory originated in an essay written by Christine Miserandino. The basic concept is that a person only gets so many spoons to use in a day. Some people may start the day with 10 spoons, other people might only start with 6 spoons.
The activities that you do each day cost you a certain number of spoons. Taking a shower might cost one spoon. Folding the laundry might cost 2 spoons. The spoons are simply a unit of currency to represent how much energy is expended on a given task.
While many people living with chronic illness understand that they have a limited amount of energy in a day, the concept of spoon theory can help friends and families to better understand your struggle.
If you know that you only have 6 spoons to spend in a day, and you have already spent one taking a shower, and two spoons folding the laundry, then you are down to 3 spoons. If cooking dinner will cost you another two spoons, then you only have one left for the day. Letting your family know that you only have one spoon left to share with them in the evening might make it easier to understand why you cannot be responsible for both walking the dog and taking out the trash that evening.
It may help to create a list for yourself, and your family of what the costs are in your spoon energy economy. Then you can begin to have a conversation with your family or yourself about what it is reasonable for you to accomplish in a given day.
Laying it out on paper can help everyone in your family to understand what they can expect. This provides a consistent framework and lets the family plan for their week. Your kids may realize, that if they want you to make them dinner and help with their science project, they are going to have to take on the responsibility of loading the dishwasher after dinner.
Your spouse might realize that if they want you to have the energy for a date night in the evening, they may need to help out with an extra household chore during the day.
As you make your list, keep in mind that even enjoyable things cost spoons too. You might love to go for a walk with your spouse after dinner, but it still requires energy and costs a spoon.
In closing, pacing activity levels takes intentionality and planning. We'd encourage you to take some time to think about some of the concepts discussed here, and share them with your social support system.
This article is intended for educational purposes and to stimulate healthy conversation around the topic of pacing. It is not a replacement for individual medical advice from a licensed healthcare provider. If you are interested in scheduling an appointment to evaluate your unique situation, call or click here to book online.