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

17 comments:

Anonymous said...

Hope you feel better very soon.
Hugs
GaL

Anonymous said...

Hope that you can recvover soon, and dance more and better than ever.
A tango hug from Iowa.

Kirra said...

It is so scary to not know what is going on with your body and how to remedy it.

Hang in there Mari, and like a follow must do just go one step at a time.

hugs to you

Hassayampa Slim said...

Just started following you and now to read this. When you can't be on the dance floor, dance in your mind. Put more faith in you, and the power you have over yourself, then in all those tests and "educated" guesses.
J.M.
aka Hassayampa Slim

Christine--RHP said...

So sorry to hear this. But I'm glad you are getting help, and I hope you are back dancing as much as you like very soon. Hugs from the desert.

Ghost said...

*hugs*

Andreas Wichter nicked this idea from someone else, I can't remember who, but credit to them.

Stand perfectly still in the embrace for an entire song.

I suspect the results vary depending on who you are and what the embrace means to you. But for me it's a profound experience, quintessentially tango. (It's sensible to put in few weight changes for comfort).

*more hugs*

Matthew J Brockwell said...

Mari, I hope you are doing OK. You might consider, if you have time, reading "Full Catastrophe Living" by John Kabat-Zinn. He has some great insights into using techniques of mindfulness to help manage pain. I was always amazed by how mindfulness and tango overlap - and being in the moment will serve you well at every step (no pun intended). best wishes for your continued health and enjoyment of dance - Matt

Anonymous said...

Mari, I was very touched by your entry, knowing yet undiagnosed pain myself. What always helps me is to know that nothing lasts forever. It'll pass. I love Ghost's/Andreas Wichter's/someone else's advice to stay still in the embrace for an entire song. I'm sure it'd help me. Good Luck!

Frances R said...

Mari, I am very sorry you are in pain. Sending lots of positive energy your way. Get better soon!

Deirdre said...

I am so sorry to hear your story and particularly to hear how it affects your dancing. I wonder where you are........... if you are anywhere near London I would be happy to help. I am a massage therapist with 28 years experience and would be happy to offer you a free session to see if I can help. You will find out about me on www.Healthtouch1.co.uk
with love and hugs D x

Keep Breathing said...

Everyone, thank you so much for your comments and messages. Hassayampa, Ghost, and Matthew - I am following your advice (and Matthew, I found the book at my local library - thanks for the rec!)

Deidre, I'm afraid I'm in central Texas - so far away, but thank you so much for offering. I'm starting physical therapy soon, and we'll see what that holds.

Again, thank you everyone for the hugs and healing energy - it must be working because I'm actually getting a bit of sleep lately. :) :) There's a milonga tomorrow night and even if I just get to sit on the sidelines and take some pictures, I'm going.

Mari Johnson said...

oops - I was signed into an old account and posted my comment from there. I really need fewer google accounts *sigh*

Elizabeth said...

Mari, sorry to hear this. Hope it gets properly diagnosed and that you can be happily dancing!
xoxoxo
E

wlobatto said...

sorry to read your pain so graphically Mari. sounds absolutely desperately hard. i hope it passes soon.

Tangocommuter said...

Terrifying. I hope you get good diagnosis and effective treatment, and soon get back to regular dance.

juh said...

I really hope you'll get better. Enjoy the tandas without your grim companion.

smw said...

*hugs*
I'm so sorry to hear this is happening to you! I believe that Mark introduced us a couple of years ago at a festival. I can't imagine that anyone who is dancing with you wants anything other than to experience that particular moment with you whatever it might bring.
Sara