Jane lives with chronic pain in Old Orchard Beach, Maine.
Whether you are an OT, PT or some other healthcare provider, you need to be aware that pain is pain. My pain is real, I don’t make it up. I want medical professionals to know about pain that involves the whole person—it’s not just how’s my belly feeling after surgery, especially when I have other circumstances causing different pain issues all at the same time.
I don’t look or act like I’m 77. That’s my choice. I don’t give in to the pain because my medical team supports me to have a positive quality of life. My frustration is often because I am not physically able to help with my grand daughter, Mariah. Every year there are more things I can no longer do.
The time in the day I feel the most pain is when I go to bed at night. There is often so much pain I can’t sleep. I manage it by walking around every few hours. During the day I manage the pain because I’m busy—not letting myself think about it. Crocheting, reading, genealogy, games on the computer. All of that helps me get by. I want to be able to help people, but my body wants to be in bed.
The pain scale of 0 to 10 is often misleading. Sometimes my pain level is much more than 10, because it is a combination of several unrelated causes of pain that I am experiencing all at the same time. My pain is very complex but it is very real and often difficult to explain.
I have a good relationship with my medical team. I did have one problem with a surgeon who was on call, and not part of my usual team. At one point in my treatment I heard him tell a nurse that he thought “I just liked the feel of pain meds and it was really all in my head”. He is no longer a part of my team of professional care providers.
Heal/Tell is a series of narrative and portraits by Cathy Plourde, Director of Add Verb Productions and Holly Haywood of the University of New England.
Please leave a comment – do you live with chronic pain? What helps you?
Learn more about the 11th Annual UNE Interprofessional Spring Symposium: the Science of Pain and the Art of Healing, April 4, 2013, Biddeford Maine.