Pace Yourself: Guilt-free Pay-to-Play

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It’s Roo’s birthday! Already!

My goals include making a simple M&M cake with no complicated writing although I used to spend hours with a frosting bag even for Valentine’s cookies. Roo’s doing great with school subjects and Cub Scouts and playmates. He’s funny and smart, with a mind of his own. Other parents may know what that means – we never know what he will say.

Last fall, when we discovered his vision loss, Roo started eye patching a couple of hours per day. After several months covering the strong eye with the patch, his vision improved immensely. He even achieved depth perception for the first time, learning to use both eyes at once, and eventually reducing his prescription.

Woody_eye_patchEven though Roo taught himself to read at 4, and reads beyond grade level, there was a question of whether he was able to use his eyes together so his eye doctor referred us for vision therapy. Last month, we did testing with the vision therapist and one interesting result showed he might benefit from exercises, even though he’s reading well and doesn’t have headaches: They use a vertical prism to test at what point the eyes separate one object into two, and when monocular vision is regained (seeing one object again). Roo’s results were very abnormal. Which makes sense to me since he used only one eye for over seven years.

The vision therapy exercises

I was surprised to learn the exercises are exercises. We’ve made progress already in a few weeks, and I’m learning more about how balance and movement are related to vision. But the first day (last month) had an impact on me I might never forget. We got clear instructions about what daily exercises to do, and how to make them incrementally more difficult, so that Roo is challenged, but not overwhelmed. One exercise that first day was jumping jacks. We started with feet only, and used music to help establish a rhythm. I hopped with Roo for demonstration, and he said I did great.

The whole jumping exercise was about five minutes (including breaks). I pushed myself hard to finish because of pain in an Achilles tendon. Then both Achilles tendons seemed to seize up, and I had to sit down. That evening I lay on the sofa, feeling guilty I couldn’t help Katie Beth with dinner (not unusual, unfortunately). But the next three days, I could barely walk. I took muscle relaxers and anti-inflammatories, drank fluids, and massaged my calves with creams. Heat was the only thing that gave some relief. My legs were just like the time took the Cipro.

Truth-telling about pay to play

A few years ago when I first wrote about the usage principle, I felt like one of the government leakers. I was telling a story people in our community knew about, but it had not been told before. So it was like underground information. In some of my early blog posts, you can tell I felt like a dissident.

But I’m not alone. Hundreds of comments on this blog say so – like the comment last night by Mr. C. that now his second biologic is failing him and he is “wiped out” for a few days after doing things he enjoys. It’s obvious he pushes himself as far as he can, and that appropriate doses of rest are necessary to keep functioning with active Rheumatoid Disease.

It’s not a new phenomenon

The 1953 book by an RA patient, Private World of Pain, repeatedly describes this phenomenon, discussing various situations where things are much more difficult for the author than others can grasp. She says, “we must frequently choose to do the ‘impossible’ (but) it should still be our own kind of impossible…our own feasible life.”

The laundry limbo

After I could walk again, I addressed my guilt about the mountains of laundry. With 6 people at home, and Roo the only one who doesn’t wear adult clothes now, piles grow rapidly into about 20 loads. And I must have done at least 8 that day. Even though a lot of rest was built-in, that night, I could not move. I think every cell in my body was inflamed.

Lessons for me, as much as anyone else!

  • Guilt about disease symptoms is useless and inappropriate. (The usage principle is an undeniable symptom of Rheumatoid Disease.)
  • Live the best life you can, that suits you and your loved ones, according to your values. This means sometimes you may pay to play. (I know this cake will cost some pain, but I want to do it. My fingers hurt after wrapping presents last night, but that was my choice.)
  • Pace yourself. Only you can determine appropriate doses of rest, in relation to your level of disease activity.

Recommended reading

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Kelly Young. All rights reserved.

This entry was posted on Thursday, June 20th, 2013 at 12:00 pm and is filed under Living with RA / Managing RA. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.


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