What Is it Like to Have Rheumatoid Arthritis? Part 1: The Usage Principle

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RA and shopping post

A dirty little secret of RA: The Usage Principle

Certain aspects of Rheumatoid Arthritis are invisible. It’s hard to track with an invisible illness. But lucky for y’all, I know what living with RA is and I’m willing to tell the secrets.

So, if you don’t have RA , prepare to have your eyes opened. And if you are an RA’er yourself, take pleasure in knowing you are understood here. Enjoy the ride and I’ll be glad to validate your parking, too.

One revolutionary reality of the Usage Principle: Moving makes RA worse

Let’s talk about moving. There are times when stiffness, swelling, or pain prevents movement. There are other times when we can move, but there are consequences. Understanding how this works would forever transform the advice given by rheumatologists and other arthritis “experts.”

In a recent comment on the blog, Jane explained the consequences of this principle. She said, “I have spent the last week in bed with flared up hips from going to a band competition where I had to walk for a long way and then sit in bleachers for several hours. My hips flared up, I feel like I am walking with bone rubbing bone. Prior to that, I was feeling fairly well.” Moving around too much and sitting still too long without proper support left Jane unable to move during the following week. It’s perfectly ridiculous – unless you have Rheumatoid Arthritis.

Moving usually makes RA worse. I think I’ve tried to explain this too gently in the past. I need to say it more slowly so that we can bridge the RA language barrier: Moving usually makes bad RA worse.

Yes, yes, there are milder cases of Rheumatoid Arthritis which only affect a couple of joints. There are also cases of Palindromic RA. For those dear people, I have this advice: Move as much as possible while you can. I hope you do not ever get the full-blown RA that we are discussing here today. But in case that is in your future, do everything that you would wish you could do again. Don’t waste time.

“The shopping problem”

When it gets to the point that I am knocking on Old Mother Hubbard’s door to borrow some food, I give in and go to the store. It was not always this way. Have you read about any of my former shopping practices? I loved to go at off hours so it did not take time out from my family or my busy schedule.

Here is how it works now: When we are getting desperate, I go to the store. I don’t dare go alone. We get out of the car. One of my kids grabs for my purse. Often, I say this: “Oh, no. I can carry it.” But, they know the Usage Principle, so they are not be fooled by my delusional attempts to do everything for myself.

At first, I can walk at a normal pace. There may be half a dozen joints in pain, but I am fortified by ibuprophen and my optimism. I’m happily distracted by great deals over here and cute babies over there. I converse with employees and chit chat with other customers. Gradually, I move more slowly.

After about 15 minutes, the Rheumatoid Arthritis makes my knees, feet, and elbows hurt. Being adept at ignoring pain, I walk on. The foot pain gets worse, but I hardly notice it because one at a time my hips go “out.” Since it’s much harder to walk, I progress more slowly now.  My helper runs back and forth to get things while I move slowly with the cart.

By the time we hit the half-hour mark, the scene is worthy of stares.  I’ve read a lot about stares and Rheumatoid Arthritis, so I don’t feel too peculiar. I move very slowly and look for anywhere I can find to sit down – even the floor. People really don’t like it when you sit or lean on a display or any part of the checkout lane.

Between 45 minutes to an hour after I first entered the store, I’m trying to leave. I can hardly walk, shuffling my feet and leaning on anything I can for support. The pain is horrible, but the frustration is worse.

The next several hours will be very difficult because of The Usage Principle. I do not give in to the Rheumatoid Arthritis, but I am not the winner either. I always go down fighting, but I go down. RA is a very powerful adversary.

The difference is RA

The difference between me and other people is neither that I’m lazy or crazy. So, please do not recommend psychiatry or physical therapy to fix this problem. The difference between me and other Wal-Mart shoppers is Rheumatoid Arthritis.

I realize how much RA can sound like malingering. Like most people with RA , I endure reactions of skepticism. Who can believe something so invisible can be so powerful?

Person without RA, this is your lucky day

You are lucky to read this blog because I know the truth, having lived on both sides of this fence. Unless you have, you may not know. However, you can take my word for it. I have told you my secret: The Usage Principle.

Note: The “shopping problem” is also known as the “typing problem”, the “gardening problem”, or the “went to a football game problem”… these are all demonstrations of The Usage Principle.

Sequel to The Usage Principle: What Is it Like to Have Rheumatoid Arthritis? Part 2: Why Don’t They Tell You?

Recommended reading:

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Kelly Young. All rights reserved.

This entry was posted on Friday, November 6th, 2009 at 6:16 am 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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