A Pained Life: The Balancing Act

By Carol Levy, Columnist

It is time for a renewal for my pain meds but I have a number of pills left.  I was excited for a few seconds. Maybe the pain has been better so I need fewer pills!

And then I thought about it a little bit more.

It is not because the pain has lessened.  

I realized I have stopped doing a lot of what I used to do.  It was not the pain that had backed off. It was a reduction in my willingness to do things that trigger pain.

I had been working on a line of greeting cards that I both wrote and illustrated. I had also created a doll and made pins of the character that had her jogging, playing the trumpet, skating and more. I had hoped to learn to sew and bring the doll to market.

Looking back, I realized I stopped working on all of it a few months after my brain implant stopped working.  I had not realized it had been helping reduce the pain. 

I still had the eye usage and movement pain that caused me to be unable to do any consistent eye work for more then 15 - 20 minutes -- before the severe and often unrelenting pain started.

Apparently, the stimulator had reduced the anesthesia dolorosa (phantom pain) in the left side of my face. And now that it had failed, the weight of small plastic glasses or the use of facial muscles (tight as a result of facial paralysis) set off pain again.

I had moved from my house to a small apartment.  Well heck, that‘s why I’m not doing things. No room to do my crafts and art.

That made sense, except I had stopped before I sold the house, when I had an entire room devoted solely to my art and crafts work.

So what stops me?

The pain, of course.  But it is also the fear of pain.

The thought occurs: I need to work on the doll, the cards, even this column, and immediately the next thought comes: But then it will set off the pain, or make it worse if it is already in play.

It is a game of balance and juggling.

Do I give up on the things that make me happy, give me a sense of accomplishment and purpose, because the pain will be bad, even unrelentingly bad?

Or do I give up? 

Lately my choice has been the latter, maybe not consciously, but a choice nevertheless.

At what point and how do we make the choices balance out? 

I wish I knew.

I only know that right now, for me, the pain is doing the choosing for me.

It is a decision most of have to make at some point.  Can we master the pain or does pain become the master of us?

Maybe, as long as we do not make it a permanent decision, it is okay now and then to give in to the pain and the fear.  Maybe it is a healthy way of taking care of ourselves.  Not a capitulation, but a short term concession.

And that is not always such a terrible thing.

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.”  Carol is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.