Get off the couch!

by Rosalind Joffe, M. Ed. - CICoach

rosalind joffe cicoach.com * from the Editrix: We just dig CICoach! Rosalind coaches people who live with a chronic illness or condition to stay employed and thrive in the workplace; her clients live with a wide range of chronic conditions, including: multiple sclerosis, scleroderma, ulcerative colitis or Crohn’s disease, spinal conditions, rheumatoid arthritis, epilepsy, diabetes, depression, and fibromyalgia, to name just a few. To learn more, check out CIcoach.com.

I spend a lot of time reading, thinking and talking about illness and health. And no matter how I look at this, I come up with the same conclusion: You don't have to be a passive player. You play a big role in your response to illness, pain and fatigue.

Here are 3 examples of what I’m talking about:

1. An article in The New York Times Magazine, July 16, 2006, describes how Floyd Landis, the Tour De France winner, is responding to the enormous pain caused by osteonecrosis (bone death). Although he lives with an extraordinary amount of daily pain, Landis continues to participate in what’s considered to be the world’s most physiologically demanding event.

Landis needs a new hip and is “shopping” for the right one, but he chose to delay surgery and ride this year with his severely damaged hip. Why? Because he can’t be sure how his body will respond once he has the hip replaced. His doctors tell him that he’s not hurting his body more by continuing to ride in this pain, but they also admit that they don’t know for sure.

It seems to me that Floyd Landis has actively made a decision, based on the information he has and his priorities, to do what he could to adapt his body to living with pain and limitations.

2. Last week, my good friend and colleague, Jenni Prokopy, ChronicBabe.com Editrix, was having a bad flare (she has Fibromyalgia and other AI) with lots of pain. She responded as she typically does. She rested for a few days until she felt frustrated that it hadn’t improved and went to her Physical Therapist. That’s been her normal routine for years.

But this time her physical therapist said, “Jenni, you honor the pain more than you honor your body’s desire to feel better. Don't forget: you do have choices.” Today when we spoke and Jenni wasn’t feeling well, she decided to go the gym and do a very short work out. It might not improve things but at least she’ll have given it a try.

In a follow-up email, Jenni wrote: “The workout DID help things, actually - it made me feel more in control of my health, and that helped me relax about the flare. The hot tub afterward didn't hurt, either. :)”

3. Recently, I participated on a panel of experts charged with creating a set of recommendations to the Social Security Administration regarding how to improve the disability determination process. My “expertise” was the perspective of the consumer. I learned an enormous amount from this group, Occupational Doctors, Physical Therapists and Occupational Therapists, many of whom see patients when they’re filing disability claims.

As you might guess, I was particularly interested in the discussions about diagnosing and treating pain and fatigue. One clinician said: “American culture tells you that when you’re tired or in pain, you should stop and rest -- because pain and fatigue are bad. Do what you can to avoid it, at all costs. And that creates a lot of problems. It’s not that we should keep doing things that bring pain or ignore the pain. But, when pain rules your life and you have no strategies for living with it, you’re on a dead end street.”

As my physical therapist once said to me, “It’s just pain.” Many people don’t see that they have options and choices about their response to pain or fatigue. It’s hard to change your attitude and beliefs about pain.

Here’s one suggestion: Occupational health physicians and practitioners noted that they have seen positive attitude and behavioral changes with cognitive behavior therapy. Read a non-academic description of cognitive behavioral therapy and chronic illness.

I know this isn’t simple. For some, it’s a daily struggle. You go to sleep with the pain and wake up tired -- that couch is looking really good. You don’t get trophies or even gold stars for this.

But ask yourself: Will I feel better being that couch potato in pain or will I feel better if I don’t pay as much attention to it and keep living my life?

It’s your call. You have the choice.

** Reprinted with permission from CIcoach.com **

Posted: 8/18/2006 in Coping

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Get off the couch!