Spoon Theory

No online discussion of a chronic condition would be complete without including the spoon theory. The spoon theory is widely shared on the internet, probably because so many people can relate to it. It was written by Christine Miserandino of butyoudontlooksick.com. She is a woman with Lupus, but her words apply to many chronic conditions. From our perspective, this explanation applies very well to chronic pain and the associated fatigue.

We may not do it justice if we try to summarize it, so before you read any further, please read the original spoon theory explanation here or have a listen to the author here.  This theory creates a common language for people in pain and their supporters to understand the impact of pain and fatigue on everyday life. Please take a moment to review it, then don't forget to come back and read our perspective.

Basically spoon theory is about having a limited amount of energy and endurance, and having to make hard choices every day about how to use it. Think back to the last time you felt under the weather, things like getting dressed and cooking seemed extra hard.  With a chronic condition everything takes more energy. On top of this pain takes energy, so it’s a double hit. Things you didn't even have to think about before having a chronic condition, become very effortful. Even “simple” things like having a shower or visiting with a friend can take up a huge percentage of your daily energy.  Before having a chronic condition, you may have been able to go about your day knowing that even if you were tired, you would have enough energy to get through everything. With a chronic condition, life becomes a giant balancing act. You have to juggle your basic needs and responsibilities with others’ expectations and activities you would like to do. This juggling act often includes multiple days at the same time. Questions such as: “If I go out today with a friend, while I be able to go grocery shopping tomorrow?” or “if I shower now, will I have enough energy to get ready after?” become a constant thought.

Spoon theory is a way of taking an abstract thought (such as "I need to decide wisely where I spend my energy”) and making it concrete so people can understand. It helps explain the concept to people who have never had to make hard decisions about daily tasks. Activities cost “spoons” and one has to decide how their going to spend their spoons for the day. If loved ones read and understand this, it can help simplify communication. Instead of having to say "I can't do that right now" (which might feel like you're letting them down), you can simply say "I don't have enough spoons for that."

To put spoon theory into occupational therapy terms, it's all about pacing and energy conservation. It's about respecting yourself and your body enough to realize you don't have an endless supply of "spoons," and that's okay. You can plan your activities throughout the day to maximize your use of the "spoons" you have (pacing). You can also think about the way you do tasks, to reduce the amount of "spoons" they take (energy conservation).

The ideas behind this spoon theory has helped both of us begin to reclaim our lives. The great thing about spoon theory is it helps you understand that you are not completely powerless. By understanding how much energy things cost, you can use it to help stop the cycle of pushing and crashing. You can learn ways to lower the cost of activities and develop strategies that will give you more spoons. Choices can be made about how to spend your resources. You can learn to recognize how many spoons you have available on a given day and how the cost of activities changes from day to day. You can borrow spoons from following days or save spoons from previous days. You can decide what tasks are the most important and what tasks would be a bonus. 

For example, consider a man with fibromyalgia, who wanted to spend a day at the zoo with his wife and young children. He knew the zoo could be an exhausting and over-stimulating place to be with children, even for someone without a chronic condition. For him, the zoo could be a near impossible venture because of his pain and fatigue. But because of his understanding of pacing and energy conservation (spoon theory), he was able to not only go, but enjoy the day. He and his wife used every strategy they had to plan this day to be successful. They planned the zoo trip for a Monday, but kept Tuesday as a back-up plan in case of unforeseen circumstances like weather changes or a flare-up of symptoms. They also planned for the next day to be a rest day, so he could recover. That Sunday, he rested and saved his spoons. When Monday came, he (fortunately) felt up to the trip. He rented a scooter at the zoo to reduce the number of spoons he would need. He and his wife had no expectation of seeing every exhibit, and just decided they would enjoy the day and see what they could. When he needed a break, his wife took the kids on a ride and he rested. After the trip, he and his wife both knew he had used his spoons, and respected his body’s need for recovery. She took over the childcare and supported him in getting the rest he needed. 

Understanding spoon theory doesn’t 100% guarantee success. Both the man and his wife were aware of the risk of a flare up. But by using the strategies they’ve developed they were able to set the stage for an enjoyable day. They had learned not to take the simple pleasures of life for granted, and they were both grateful that they were able to experience a memorable family outing.

One common feeling that can come with pain or any chronic condition is a sense of powerlessness. By using strategies to maximize your spoons and being patient with what you have, you regain some sense of control. Through this process, you can respect your body’s needs without letting pain make all the decisions. We hope this helps you create the freedom needed to do what matters most. 

Acknowledgements:

Graphic designed using Tagxedo at http://www.tagxedo.com/

References:

Miserandino, C. (2003). The Spoon Theory. Retrieved from http://www.butyoudontlooksick.com on August 21, 2015.

What is Pain? Part Two: The Pain Alarm

Believe it or not, pain is very useful.  It is a wonderful thing that our bodies are capable of feeling pain. Acute pain is protective, needed, and serves a purpose. Imagine a toddler exploring the world without pain - that child would sustain an unbelievable number of injuries while experimenting with different ways of moving, with no indication that any of these movements could be dangerous. The protective nature of pain can also be seen with conditions that affect sensation, such as leprosy, diabetes, and quadriplegia. In these conditions there is a loss of protective sensation that can result in serious injuries and wounds. The following diagram is a simplified version of what happens in the body and brain when pain is experienced. The painful stimulus is recognized and our body reacts in order to protect itself.

However, there can come a point where pain stops being useful,and it turns into something far less helpful, and even insidious. Chronic pain is pain that is no longer protective. Sometimes chronic pain may be linked to actual damage in the body, such as in conditions like arthritis or cancer. Other times, there may be no obvious physical reason for the pain to persist “If acute pain is Dr. Jekyll, then chronic pain is Mr. Hyde. It is the body’s alarm system gone amok.” (Richeimer, 2014, p.2)

Another way to think of it is that acute pain is like a fire alarm, loudly informing you that there is a problem that needs to be addressed immediately. Chronic pain is like the fire alarm is malfunctioning - sounding regardless of whether there is a fire, or continuing to alarm long after the fire has been put out (Thernstrom, 2010). Even though this alarm is not signaling immediate danger, it is very real and can be so loud and overwhelming that it leaves you unable to function or focus on anything else. It can be undeniably disruptive to everyday life. There are many theories to explain why the alarm may become dysfunctional. This diagram demonstrates a few of them.

Unfortunately, chronic pain isn’t as easy to “fix” as a broken alarm would be. For a broken fire alarm, you would simply unplug it, or call a repair technician.  If chronic pain is telling us our system is out of whack, we need to figure out why and then work to solve it, which is no easy task! To fix the misfiring alarm you may need a team of “repair technicians” - a physician, pharmacist, physiotherapist, occupational therapist, psychologist, and other team members. Even with all these people on your side it is still possible that there will be no way to silence the alarm. Managing chronic pain is like reducing the volume on the alarm and learning how to function while it’s still sounding.

We firmly believe this is possible and achievable. Chronic pain changes life, but it doesn’t have to define it. There are no overnight solutions, but there are a variety of strategies that can lessen pain symptoms and improve the ability of an individual and their family to function. What are your strategies? What has worked (or not worked) for you? Please feel free to share your thoughts with us through the comments below or email us. We look forward to discussing these in future posts.

Thank-you for. coming along on our journey as we work on fixing the broken alarms in our own lives. We hope this blog can create a community where we can inspire each other to live the best possible versions of our lives. 

Acknowledgements

Diagrams by Reclaiming Life. Brain graphic from Freepik.com

References

Richeimer, S. (2014) Confronting Chronic Pain. Baltimore, Maryland: John Hopkins Press.

Thernstrom, M. (2010) The Pain Chronicles: Cures, Myths, Mysteries, Prayers, Diaries, Brain Scans, Healing, and the Science of Suffering. New York: Farrar, Straus, and Giroux.

What is Pain? Part One: Defining Pain

What is pain? It sounds like a simple question, but we challenge you to take a moment to try and define it before continuing to read.  

It’s difficult to do without simply using synonyms (eg. “something that hurts”). It’s also difficult to come up with a definition that includes all types of pain, from the annoying sensation of a paper cut to the overwhelming pain of childbirth, from the sudden, sharp pain of a needle to the dull, aching pain of a strained muscle. There are countless sensations and experiences that can all be described as pain. None of us has any way of truly understanding what another person is feeling when they say they have pain. Perhaps this is one of the reasons there are so many stereotypes and misconceptions about pain. We think it’s very important to define pain, for two reasons: First, for a person experiencing pain, defining it can be the first step in understanding and managing it. Second, for friends and family, a basic comprehension may enable them to be more empathetic and supportive.

We asked for your help in defining pain, and here are some of the comments we received:

• Pain is discomfort that can occur at infinite levels of intensity (not just a scale of 1-10 like your doctor says).
• Burning, stabbing, achy. Exhausting, draining, overwhelming.
• Chronic pain is tiresome; it doesn't leave you alone despite all your efforts to make it go away.
• Pain is a feeling that interrupts something you may want to do. As it intensifies, it becomes all you can think about and you become obsessed with finding ways to relieve it so you can get back to your regular life routine.
• Pain can be dull or sharp. It can feel like a knife, like being bludgeoned with a club, or being burned anywhere and everywhere. As shallow as your skin or as deep as your bones; it can debilitate your body, distract your mind, detract you from your goals/dreams, and overwhelm your senses.
• All of us experience pain in one form or another every day of our lives. Pain varies from the insignificant and fleeting experience of stubbing a toe to the gnawing and persistent pain of an abscessed tooth and the intolerable, totally absorbing, and endless type accompanying chronic diseases. We know the pain from a stubbed toe will pass and soon be forgotten. The toothache, too, is usually quickly remedied with penicillin or sulfur based drugs and a dental procedure. The pain of chronic diseases is the tiger let loose. It is only marginally controllable and its lifespan, completely undeterminable.
• Pain hurts and affects everything. If I don't react how you think I should, please blame the pain, not me, or you.

You can see how there are many different ways to define pain and the impact it has on life. Each of these comments adds more clarity and a more complete understanding of the experience of pain. There are a few more definitions of pain that we’d like to share with you. These definitions seem to be very widely used and accepted. Like your comments, each of these definitions adds an essential piece to the puzzle:

• “an unpleasant sensory and emotional experience associated with actual or potential damage” (Merskey & Bogduk 1994).
• “pain is produced by the brain when it perceives that danger to body tissue exists and that action is required” (Moseley 2003)
• “Pain is whatever the experiencing person says it is, existing whenever the experiencing person say it does” (McCaffrey and Beebe, 1989)

However, even with all these definitions together, there are still parts of the pain experience that remain unexplained. One reason it is so difficult to understand another person’s pain experience is because there are so many individual factors affecting it. One factor is our mood, as “pain viewed with stress, depression or anxiety is felt more strongly than pain experienced when you are hopeful, upbeat or encouraged” (Richeimer, 2014, p.16). Social factors also affect the pain experience. For example, boys may grow up believing it is unacceptable to cry in front of others (or at all). Even though boys and girls can have the same injuries, they may experience that injury differently because of the messages society has given them. Pain is also affected by previous experiences. For example, Ashley had a family member who had two herniated discs, who was is in excruciating pain and had emergency surgery. Less than 24 hours later,the nurse caring for him was astonished that he didn’t want any pain medication. She asked “Doesn’t your incision hurt?” and he responded “A little, I guess. But it just feels so good not to have the herniated discs anymore.” His experience clearly affected his perception of post-operative pain.There are many other factors at play in our bodies and environment. This graphic demonstrates some of them.

Adding to the complexity of pain is the fact that something so unpleasant is actually very much needed. Our next post will explain why and address the differences between acute and chronic pain. For now, we hope this post has brought some clarity and understanding. If you are experiencing pain, you are not alone. Pain is part of the human condition that we will all experience in some form or another throughout our lives. Understanding it is just the beginning.

Acknowledgements

A special thank you to everyone who provided their definition of pain.
Pain Experience graphic by Reclaiming Life. Brain graphic (center) from Freepik.com

References

McCaffery, M., Beebe, A., 1989. Pain : clinical manual for nursing practice. C.V. Mosby, St. Louis.

Merskey H, Bogduk N. 1994. Classification of chronic pain. IASP Press, Seattle

Moseley, G.L. 2003. A pain neuromatrix approach to patients with chronic pain. Manual Therapy, 8(3), 130-140.

Richeimer, S. (2014). Confronting Chronic Pain. Baltimore, Maryland: John Hopkins Press.