What Is it Like to Have Rheumatoid Arthritis? Part 1: The Usage Principle
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 ya’ll, 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 RA’ers, I endure reactions of skepticism. Who can believe something so invisible can be so powerful?
Non-RA’er, 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.
Recommended reading:
Rheumatoid Arthritis Makes Things Difficult
What is Remission of Rheumatoid Arthritis? Part 1
Should Rheumatoid Arthritis Patients Exercise, Part 2
Should Rheumatoid Arthritis Patients Exercise?
Subscribe to feed
Don't miss this!
I so understand this.
Well said Kelly….and understood. I hope your weekend with relatives is good & goes by really fast.
This is absolutely like it is. Although I’m not to this point yet, I’ve had relatives who were, and it was painful to see. They were stoic, but suffering. I’m glad you brought it out into the open so those w/o RA (or any kind of arthritis) might learn a thing or two when meeting a person w/ RA. I always love your blogs…
I’ve experienced the “Usage Principle” too many times. Experts recommend swimming for RA patients. The past two times I tried swimming, I could barely walk as my knee that has damaged cartilage was screaming at me day and night!
outstanding. I was seriously wincing in pain for you as I read about your shopping trip….well written and true. thank you k.
Sister, I know how you feel, I use the shopping cart to lean on. I don’t care what people think. I just smile at them!
Yep the usage principal!!!
You surely must be able to read my mind, I had to go shopping yesterday & it was horrible, my knees hurt, my neck hurt and I saw everybody I knew! And of course, they all say ” Wow, you have lost weight, you must be feeling sooooo much better! You look great!” If they only knew how hard it is to walk all over Wmart, gather groceries, off high and … Read Morelow shelves, ant then knowing you have to unload it onto the checkout, bag it then load it into the car and you know the rest, it is VERY hard on us folks, but we are SURVIVORS and we do it for our family. But Yes, I use the buggy to lean on, never go into Wmart without getting a buggy, it is a security thing!
Thanks for sharing, Kelly. I’m very bad about not telling how things are. I bluff my way thru, because I don’t want sympathy. Maybe it’s denial – or rebellion.
I know just how you feel Jodi, to me RA is my dirty little secret. I am not sure if it’s that I don’t want sympathy or I don’t want people to think I am complainer. It could even be the fact I am so sick of explaining something that no one understands anyway and getting the lame comments that I know everyone can relate to!
I’ve been putting off shopping for 2 weeks now… I can relate (but I’m not as much in pain as the rest of you–but bad enough). Thanks for the post and sharing what we are all thinking.
I can relate to the shopping experince. It has become too much for me lately. I try to run into small stores so I am not stuck running all over a big store (i.e., Walmart)looking for what I need. I am relieved that an Aldi’s store opened a quarter of the mile from my house. When it comes to my shopping experince, I don’t feel like driving farther than I have to. Everything is hard with RA, walking, sitting, you name it. I am going on a month of pain in my entire left foot, with swelling escalating into my left hips. This is my life now. I accept it, but it isn’t always easy. I hate to see others suffering from RA, but I am relieved that I am not alone.
Kelly, when I read this, I swear I felt like you were telling my story, our story, girl you know the art of RA and hit it everytime like a nail on the hammer….. this is exactly what working out or doing too much does to me, one day of yard work and I am down for 3 days….thank you for wording it so well
You are so right! I am completely wiped out and in pain from my neck to my toes after going to walmart for groceries. The rest of the day is wasted because I can barely move and just want to rest!
Kelly, I can’t walk at a normal pace, but I have a high endurance rating. I walk, stand, climb stairs for 12 hour shifts at work. Some days after work it is all that I can do to make myself stop and pick up a few things that we need. But I’m looking at the bright side, at least I’ve not shown up on the people of Wal-Mart web page yet.
http://www.peopleofwalmart.com/
Thanks for the post.
Kelly, amazing blog and SO the story of my life!! I try and get in and out as quickly as possible so that I never hit the 45 min mark but the other week I did have the bagger put all of my groceries in the car for me, I had been in the store for almost 30 mins which is 10 min too long. They all looked at me funny, a 26 yr old woman who looks perfectly fine needs help!?! Im sure they thought I was lazy. But hey I survived another shopping trip
And why aren’t there more people at Sam’s Club to lift heavy things for us?!?!
Right there with ya.
Optimism is a wonderful thing. Both me and my OH are full of it lol. I have RA & he has AS so the blind leading the blind in our household lol.
Grocery shopping online is superb for days when we’ve overdone the Usage Principal with general housework.
Our motto now is “If we can, we do. If we can’t, we don’t”
I love your motto. I have said something almost exactly the same here on the blog with regard to exercise. Cheers to your lovely attitude.
Kelly, I am laughing so hard it hurt’s…. The Usage Principle is sooooooo true,,, I love the way you think,,,, it is funny but not so much because it is sadly true…. thanks for the humor I will think of this as I rally my possie of people going with me to Walmart today to shop for the dreaded groceries…. I may take the electric cart today, it may be funny to endure the stares and be able to laugh….thanks my friend…. thinkin’ of you and smiling….
OMG! I live the Usage Principle daily but had not heard it described so well. My family has adjusted to the fact that I will look “fine” and then all of a sudden I have to sit down and rest.
You just described my trip to the grocery store every weekend! And people really don’t understand this concept!
Dear Kelly,
I thank God for you and the transparency with which you write!!!!!!! Thank you for this blog and helping so many of us realize it’s not just “ME”.
May God Bless your faithfulness!
Very appreciative RA sister
Thank you very much, Connie.
I try hard to make it clear what it’s like to be me (us) without chasing people away because it sounds like “whining” – It’s hard because some are defensive & do not want to hear about this…
Would be fun to write about something people really like to hear about some day…
Dear Kelly,
Please keep doing exactly what you’re doing! I can’t imagine anyone with RA being chased away by the truth.
It is so refreshing to read your blog and the replies.
We all need the support and humor provided on these pages.
You have a gift my friend, keep shining for HIS glory——-I for one REALLY LIKE HEARING what you have to say!!!!!!!!!
I found a cane on Amazon that can be opened into a little seat. I use it every time I go shopping, just sit down for a while two or three times. Makes a huge difference. Good luck, all.