Not Measuring Up

When I returned home from my last knee replacement surgery I had nurse visits, home rehabilitation with a physical therapist, and also occupational therapy (OT) for helping me adjust to my new limitations with adaptations. My OT sessions also included working on my range of motion and strength in my hands and arms.

During the first meeting, my otherwise very pleasant occupational therapist spent an hour measuring range of motion in my arm joints. She used a large goniometer for my elbows and shoulders. Then she pulled out a tiny metal one for my wrists and fingers.

It was agonizing! Not painful, but each joint budged just a few degrees. Truly, I was being measured and found wanting.

This was not news to me. I wasn’t surprised to learn that my arms and hands have issues. I’ve been living with severe stiffness and joint deformities for many years. Gradually I have developed ways to manage with the limitations my RA has left on my joints.

Throughout my childhood with RA I was regularly measured and therapists would shake their heads at my decline. I don’t think they understood the effect this had on me.

First, I would feel responsible and terrible about myself. But I didn’t have any control over my disease and how aggressively it attacked my joints!

Second, I felt increasingly helpless about my condition. If the goal was to prevent severe joint damage, I had lost the battle. Only later did I realize that my goal was not to be ‘normal,’ but to live the best life I could despite the reality of severe RA.

I was never going to be able to spin my shoulder around my head, do push-ups, or even point in a straight direction. But maybe I could work, write, and enjoy my life without a perfect range of motion?

Honestly, I am not against measurement or even range of motion measurements specifically. However, I don’t think measuring my lack of movement is all that helpful in understanding or tracking my RA. Perhaps in the early stages of my disease it may have showed the speed of the damage.

But after more time and reflection, I think tracking my inflammation, pain levels, stiffness, and fatigue is much more informative. Frankly, my joints are pretty far gone and many are frozen into place or with a limited range. We can get a much better picture of current disease activity from how I am feeling than lamenting all the damage that has already been done.

I know the point of measuring the limitations of my joints was not to make me feel bad. However, I’m just not sure anymore that range of motion numbers do much more than that. Does comparing my RA-affected joints with normal joints tell us anything different about my illness?

I’d like to challenge the notion that I don’t measure up. Sure, maybe in important ways I am limited. But I keep fighting my RA and work hard to live a fulfilling life. Is this failing to measure up?

I know that I’m fighting clinical assessments with ideas about quality of life, which many doctors and therapists may find uncomfortable. But living with a long-term chronic disease is not about being cured and may realistically involve gradually losing ground. I don’t want to lose the big picture, the really important stuff of life in pursuit of numbers that will never be satisfying.

Maybe in many people’s eyes I don’t measure up. But to them I want to say: don’t count me down and out. I’m still playing the game of life!

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Comments

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  • Connie Rifenburg
    4 years ago

    Kelly, how would you change the way that “necessary” testing could be handled? What would you have liked them to do/say to encourage rather than discourage you?

    I think this is an import and overlooked training of PT’s. Their “approach” to invasive monitoring of a chronic disease. Would you have suggestions, or Tracie, would you have suggestions, as to how better train those people charged with the management of your OT/PT?

    For people who are facing a debilitating illness from a young age, it would seem so important to have training that actually came from patients. I know everyone’s case is different, but I feel like you also have so much to offer as a long time recipient of care givers.

    Would it be helpful to give a course in rehabbing chronic cases vs rehab of a single injury? There truly are differences that are important. Milestones that a “complete” recovery patient could meet that a chronic disease rehab may never meet.

    They should still have successful markers of improvement that emotionally would give goals and success to those people looking for “improvement” even though the disease will never completely improve.

    What are your thoughts?

  • Tracie
    4 years ago

    Oh Kelly, you have managed to write down in exactness???? The way I have felt for many many years! I, too have had RA since about the age of 2 (1971 or 72) to be exact. I have learned to “manage” my disability as have you. From your story I think I may be a tad bit more mobile than you. I was able to work as an RN until 2004. I have 2 HEALTHY boys aged 19 and 15. Thus far I have only had both hips replaced. I do not use a wheelchair ,cane , etc YET! I totally understand what you were saying about managing. Example: with my “frozen” right shoulder I have to brush my teeth, comb my hair and sometimes eat with my left hand. And I am right handed. When I worked as a nurse I believe I could have started an IV with my left hand! In our house , there are days that I have to laugh at myself ,or my kids or husband will make a comment about. Moms ” metal legs”. If we didn’t I would probably go crazy! I know our illness ( I don’t like the word DISEASE) is not going to get any better, so we have to manage as best we can and keep moving!! Thank you for reading my mind!

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