Pain and Sensation

Living with chronic illness (plus another starred review for my forthcoming book)

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Every morning for the past eleven (twelve? thirteen) I’ve unscrewed the blue cap from the orange bottle and, after eating something (one must eat something before), I swallow the Prednisone, grimacing at its bitter taste, impossible to avoid.

I waited nine months for my last rheumatology appointment, and the doctor spent seven minutes with me, quickly reading over her notes, grasping my hands to squeeze my knuckles, wrists, elbows. She didn’t bother asking me to remove my shoes. Pain level? Three. She says I’m inflamed, notes several new cysts forming in and around my joints. Has the Humira stopped working? It stops working, eventually. We’ll go to once a week. If that doesn’t work, we’ll have to try something different.

The Prednisone is an emergency tactic– a miracle drug with major drawbacks. My inflammation is down but last night I lay in bed trying to feel my body. I couldn’t feel my own physical boundaries, only my throat and spinal cord. I patted myself with my hands to make sure I wasn’t swelling up with air, threatening to float away. Eventually I got up and went for the Valium, a last ditch effort to prevent an impending panic attack triggered by the looming threat of complete physical disintegration.

Reddit provided relief, if only to confirm that my experience was a common one. Several posts about psychotic episodes, breaks with reality. One commenter wrote about seeing a bloody foootprint wherever they went, until their Prednisone course ended. Another detailed breaking fifteen years of vegetarianism, eating several bags of pork rinds in a row. And worse things I won’t detail here. This morning I took magnesium and vitamin D, which supposedly helps.

This is what it is to have chronic illness, and I’m lucky that mine has a name. Rheumatoid arthritis. Lucky to have health insurance that covers my expensive medication, whether it’s working or not.

Yesterday I had several anxiety meltdowns, and with each one I kept asking: is this real anxiety, or just the Prednisone? As if there’s a difference.

Today I began tapering down from 20mg to 15mg, despite my doctor not telling me to do so. She just gave me the prescription, a 30 day course, with no taper. From previous experience I know the consequences of stopping without tapering. It all depends on the doctor– whether they care, or whether they have too many patients, as mine does, to pay close attention to any of them.

Last week I began physical therapy again, too. My leg has been bothering me. My spine. The nerve from that old injury and surgery. When the physical therapist asked me about pain I kept using the word “sensation.” It wasn’t until the end of the appointment that it dawned on me: I was describing pain, but I did not call it pain, because pain is painful.

Much better to call it sensation. Burning. Pins and needles. Muscle spasms. She told me the nerve was once again compressed. My quads aren’t firing. I have to stop lifting weights. I can’t walk for longer than twenty minutes. Sitting is a dangerous sport. Throughout the day I manuever my body from shape to shape, each movement changing the sensations, none relieving them.

She sends me to the pool. Not to swim, but to walk in the shallow end with a kickboard in front of me. I recall deadlifts, pull-ups, hiking. I long to be out of breath. Strong. Maybe I’ll get there again, but there’s also a possibility that I will never again be able to lift heavy weights, or run, or sweat over the stairmill.

Life is a series of transitions.

Some of us are lucky enough to live in healthy bodies, without chronic pain or illness. Some of us aren’t. But eventually all of us will experience the limitations of our bodies. It’s a privilege, yes? To live long enough? Except some of us don’t have to live very long. And some are born into bodies that operate differently than those who are, as they say, “abled.”

I am experiencing pain and limitations. My work here is to be present. In the past, I’d have pushed through.

After my physical therapy appointment I wondered how strong I was– as a firefighter I worked at the highest athletic level– harder than Olympians. I swung tools for 16 hours a day, seven days a week, six months a year. Ran chainsaws. Hiked with 50 or 90 pounds on my back or over my shoulder. Was I strong? Or was I just good at calling pain by another name?

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My forthcoming book got (another) starred review!

And I’m putting together a bit of a tour. If you’re interested in hosting me at your local indie bookstore or library, please reach out.

Tell me how you are? What you’re doing? I’d love to hear.