A couple of months ago, we posted an article on activity pacing – figuring out what you can reasonably do in a day, how much you need to rest, etc. This skill is crucial for effectively managing chronic pain and fatigue. There are a couple of ideas that can help you visualize this concept and explain it to others.
One is something I call the Marble Concept, from an essay written by Linda Jean Frame in 1998. Here is the idea: every day you imagine starting out with a jar of marbles that represents how much energy you will have that day. Everything you do, including getting out of bed, showering, and getting dressed, is going to cost you at least a marble, and many activities will cost more than one marble. You may start with a different number of marbles every day, so even though you may have enough for certain activities on one day, you may not have enough on another day. The faster you do something, the more marbles it will use up. Stress and tension increase the marble cost of activities. You don’t get any more marbles until you rest, so you need to prioritize how you are going to use your marbles.
The other idea is the Spoon Theory, known to many folks with chronic illness (they call themselves “Spoonies,” and there is even a Wikipedia entry). It comes from an essay written by Christine Miserandino in 2003. Christine has lupus and fibromyalgia, and came up with Spoon Theory when she was trying to explain to her friend what having these illnesses was like for her. She and her friend were sitting in a diner at the time, and Christine grabbed up all the spoons she could find, twelve in all, gave them to her friend and explained that she would go through a hypothetical day, and Christine would take away a spoon for each activity. When she was out of spoons, she can’t do anything else. It’s similar to the Marble Concept, but is a little more explicit that an outside force (Christine/the illness) was limiting the number of spoons, and determining how fast they get used up.
I like both of these ideas. Both can be very useful in visualizing how to prioritize your activities, and in explaining to others what it is like to have a chronic illness. I like the Marble Concept because seems harder to figure out how many marbles you have in the jar at the beginning of the day, so it gets at some of the uncertainty about the limits of living with chronic pain, and you have a wider range of units – something small might take one marble and something large might take 20 marbles. An added bonus are the puns you can make about “losing your marbles!” I like the Spoon Theory because the limitations and frustrations are much more obvious – there are only so many spoons available to you, and you don’t get to decide how much the activity will cost you. Christine’s essay is beautifully written and eloquently illustrates the challenges of living with a chronic illness, without being self-pitying – I encourage you all to read it, and to share it with friends, family and co-workers.
ButYouDontLookSick.com is Christine Miserandino’s website “to help everyone with a chronic illness or invisible disability, in order for them to live their lives to the fullest and not feel isolated and alone,” with all kinds of great upbeat articles and ideas about living with chronic illness, especially “invisible” illnesses, like chronic pain.
At North Shore Pain Management we provide advanced, evidence based, multidisciplinary and cost effective pain management. Our goal is to improve your ability to return to the activities you have been missing as well as provide a meaningful reduction in pain.