Am I in Control of My Body?

Compared to many, my chronic health issues are almost embarrassingly in check. I take my meds. I try to keep to a sleep schedule. I’m not regularly in substantial amounts of pain, and in fact have good days where pain isn’t a factor at all. I’m able to hold a well paid full time job with great benefits.  I miss maybe one day a year due to actual chronic illness related concerns. I know, compared to many, I am very, very lucky. 



Nevertheless, every few years I get to add a new acronym. A new diagnosis. FM. GP. IC. And after each I adapt and learn what my new normal feels like. This last year it was asthma. And like every other time it takes months just to get into the specialist, labs, and the great game of figuring out the right meds and dosages. Adjusting my budget to fit new copays. Assessing and dealing with side effects from meds. After the asthma diagnosis, and after being on an inhaler for two months, I stumped a pulmonologist who asked me if I feel like my meds were working. What is "working" supposed to feel like?  I felt a bit better, but was a bit better the new normal? Should I have absolutely no asthma symptoms? I still had some chest tightness, usually every day, sometimes lasting the whole day. He asked why I hadn’t called the office and ask about alternatives...and frankly it was because it just didn’t occur to me. I thought that this was the new normal. Turns out that the next step up in inhalers (a combined one) definitely helped the symptoms.

All of this makes me think about what living with chronic pain does to the psyche. My good days are characterized by the simple absence of pain. And pain is sometimes confusing: I let hip pain progress too long, thinking it was a manifestation of my fibromyalgia rather than an injury (turns out it’s bursitis). Again, it didn’t occur to me to complain about it, just a new normal. Because for me and my fibromyalgia, my pain shifts. Some weeks or months its mostly upper body, sometimes lower, sometimes back. maybe a combination of quadrants. When I'm asked to rate my pain, I have to pause and think about it and differentiate it from my other pain. Which makes these smart medical professionals question my pain at all, because according to them I shouldn’t have to think about it. But I do, because I have other pain, which is sometimes equal in intensity. How much does it hurt on a 0-10 scale?  Sometimes I just don't know.  Does it hurt?  It aches.  It pulses.  And maybe I don't even know where it hits on the pain scale simply because it's been there for so long.

I have moments where I’m just dumbfounded by other peoples bodies.  I have friends who seem wholly in control of their bodies and man, there’s serious power there. They train for marathons, eat commit to fantastic diets (and display an incredible amount of willpower in doing so); they have a belief in the simple power of their bodies. I’m don’t. My body is often not within my control and I want to shriek at a world (and sometimes well meaning colleagues, friends, and family members) who continually tells me that this is because I’m not exercising enough, doing the right kind of yoga, taking the right vitamins, using the right essential oils, getting enough sleep. That I need to buy a salt lamp, have weekly massages, put air purifiers in every room. That it’s something I’m not doing, and if only I did this thing, that I would feel fine.

I know that it’s often just this simple: some days I have no control over this body of mine.  And learning to let go of control has been one of the hardest things I've had to do, but also one of the most liberating.