There are 46 words for snow in Iceland. How many are there for physical pain in English? Googling synonyms: Suffering, aching, torture, throbbing, discomfort, ache, sore, throb, sting, twinge, shooting, irritation, tenderness… I recall sitting with my mom when she was dying of pancreatic cancer, trying to understand what her pain felt like. Ma, is it sharp, dull, aching, constant, ebbing and flowing? The more descriptors I tried to come up with, the more frustrated she became with me. No words worked for her. Yet she tried to describe it to the hospice nurse or doctor without success. Granted, my mom was home bound and bedridden. She was past the place where function didn’t mattered. How does your pain affect your ability to socialize and work? The way I manage my annoying neurological pains is to get to know them intimately. Meditate on the pain. Sensation, location, travel, duration, what makes it better or worse…. It takes the edge off, helps me be less freaked out and I can manage with less medication. I find my professional team intrigued by my desire to describe it in such great detail. I’m a bit of a freak. Turns out that acupuncture and mindfulness help me enough with my short bursts of radiating neurological zapping down my limbs that I don’t need medication and my function isn’t disturbed. I recommend that you read Rosalind Joffe’s blog this week, Can You Talk About Your Chronic Pain?
From my caregiver readers, I’ve learned that the core data set available to anyone for a person with chronic illness needs to include, What works for me when I’m in pain (or scared), and what doesn’t? In the past three years, I’ve been completely unsuccessful in finding any health data professional wanting to join me in the challenge of adding this to a core data set. I understand, no check box will work. How would you create standards for that data? I’ll keep at it.