The joy will burn out the pain

Pain is temporary. It may last a minute, or an hour, or a day, or a year, but eventually it will subside and something else will take its place. If I quit, however, it lasts forever.  -- Lance Armstrong

My old companion is back. Sometimes it is resting on my shoulders, sometimes squeezing my ribs, sometimes clawing at my legs. In its wake, I'm sore, angry, tired . . .  and scared. More paralyzing than the pain, as always, is the fear of the pain which has settled over my skin.

I'm dancing less and less. I go as often as I can, dance as long as I can. Saturday night I made it two tandas and then my calf seized up hard enough to turn my ankle and pull my foot under.  My partners have been patient with me. I can feel the change in my dance, I'm sure they can feel it too. A couple have said so.  I'm slower, less responsive, heavier. I can either dance in pain, or dance under the sedating effect of muscle relaxers that minimally help control the pain. Every time I get up to dance I wonder if it's a mistake. Moving makes me feel better much of the time, but I'm putting my partners in the position of compensating for me.

Anxiety sets in with that thought.

How long before I can't dance anymore at all? How long before my skin hurts so much I can't even be held?

Two days ago, for the first time in my life, I needed help to get off of a city bus. The driver gently chided me, saying that if I had an impairment I needed to be seated at the front of the bus where it's easier to get on and off. I told him I hadn't been impaired when I got on the bus. How could I explain? I never get warning before hand.

So now my cell phone is always charged and ready should I need to call for help. I sit at the front of the bus. I double the amount of time I think I'll need to get anywhere. I've always tried to operate under my own power and I'm not going to stop now. It's just that everything seems so much more complicated now.


Looking for answers

I had a visit with my new Osteopath yesterday.
After much discussion, prodding, patting, stretching and poking, he said, "Well, I know what it isn't."
Me: "um, okay?"
Him: "It's not fibromyalgia."
Me: "Excuse me? That's what I was diagnosed with years ago."

A small, hard panic formed in my stomach. Was I going to have to start all over convincing someone that the pain wasn't all in my head?


Him: (flipping through my chart) "and that's what you had years ago. I don't doubt it at all. This is something different. You don't have the tender knots under the trigger points. We're going to have to start all over - first with rather a lot of lab tests to rule out some things." CPK, C-reactive protein, mineral levels, thyroid, sed rate . . . the list went on and on.
Me: "Well what do you think it is, if you had to guess?"
Him: "Right now? Based on nothing but symptoms," he looked at me under knitted brows, "Polymyositis. It means 'many-muscles-inflammation'," he said in answer to my confused expression, "a little bit like rheumatoid arthritis, but in the muscles and connective tissue. It's treated with short term, high dose steroids among other things. But let's make sure that's what it is."

He ordered the tests and sent me to the lab just before closing time. Next week I should have more answers about what to do next. Meanwhile, my instructions are pretty clear cut. When I'm not in pain, move, exercise, walk, dance as much as I can comfortably. When the muscles cramp, stop - stop everything. Don't try to stretch it out (which is incredibly hard not to do since it seems like it should work - but it never does.) Get the muscles in as neutral a position as possible and wait it out. Otherwise, because the muscles are in such a vulnerable position, it's very easy to do damage unintentionally.


So now, I wait.
I dance when I can. Stretch, walk, move when I can.
I listen to tango.


Find a place inside where there's joy, and the joy will burn out the pain.  -- Joseph Campbell