During the holidays, I read about musician named Jason Crigler who suffered a brain hemorrhage that left him temporarily unable to speak or walk. He also had to teach himself how to play guitar again.
Don’t worry, I’m definitely not trying to compare arthritis to a brain hemorrhage, but there is something about this quote from Crigler that I think rings true for a lot of us arthritis warriors.
“I knew what to do; I just couldn’t physically do it,” he says. “It was painful, because my hands were so tensed up, like claws almost. I’m still working to get that open all the way. But I knew mentally what to do, and I could hear what to do. Physically doing it was the issue.”
Nothing is more frustrating than trying to do something as simple as say, open a can of soup, only to discover that either you simply can’t do it, or you can do it, but with great difficulty. If you haven’t had arthritis all your life, you can remember when opening a can of soup was not hard. But now it is, along with a lot of other things. We adapt and we get through it, but it still sucks. For me, the momentary frustration of not being able to do something that I believe I should be able to do with ease, does not go away. It’s always there. Sometimes I get teary. Sometimes I’m angry. Sometimes I just roll my eyes, as if to say to my arthritis, “I know what you are up to, but can you cut me some slack today?”
But I keep moving forward, and I remind myself that there are good days and bad days. Here’s to a year where we all strive to “keep moving forward.”
Read More on Jason Crigler [via NPR.com]
There was a documentary made about about Crigler’s miraculous recovery, which looks to be very inspiring. Check it out here.
Juliana Sadock Savino used to be a professional musician, but was forced into early retirement after a hand injury. Around the same time she was diagnosed with Fibromyalgia.
Juliana’s story is a beautiful illustration of how to cope with pizazz. She found a regular activity that lifts her mood, while also giving her a bit of a musical fix that has been missing since she had to basically give up playing the double bass. That is inspiring to me.
“There is the fun that comes with feeling free to make a complete fool of myself, one of the consolation prizes of middle-age,” she told me. “I dance for myself and for the fun of being in class. My doc says I am the only tap-dancing fibromyalgia patient he knows of. Do my feet hurt? Sometimes. But as Sammy Davis says in ‘Tap,’ I want to die with my taps on. Actually I’m living with them on.”
Watch the short video that tells Juliana’s story of coping with chronic pain by tap dancing — even while in line at the grocery store!
I also highly recommend checking out Matt Harding’s YouTube video, titled "Dancing" (which is mentioned in the NY Times blog post) if you have not already seen it. It’s simple, beautiful and powerful.
Being the variety junkie that I am, I have a few different activities that help me cope with my rheumatoid arthritis: physical activities (biking, swimming), blogging here, playing my clarinet on occasion. Next year, I am hoping to take up outrigger canoeing … if my body can handle it. Really anything that I can get excited about helps me cope, from watching "The Office" to listing to a great new song on the radio.
Do you have a regular activity that helps you cope with pain? Tell me about it in the comments.
Having a chronic disease not only has a way of zapping your energy, but it can also deliver a mighty blow to your optimism as well — especially when you are first diagnosed and trying to sort out all the new information:
I have WHAT? I need to give myself a SHOT to feel better? I CAN’T play softball anymore? I need HELP opening the salsa jar now? I don’t have TIME to be slowed down by this disease! Bah!
Thomas Edison was an optimistic fellow and has some great tips that one can apply to managing their disease or to life in general. The folks over at Life Dev have the complete post, but I’ll offer up my favorite tip to get you started:
1) There is no such thing as a failure- there are only unexpected outcomes which will provide valuable guidance for future work
Our greatest weakness lies in giving up. The most certain way to succeed is always to try just one more time. -Thomas Edison
Edison believed that most people gave up to soon and walked away from success, accepting failure. He viewed negative events as temporary setbacks on his inevitable path to success. To live like Edison, coach yourself to not take setbacks personally, and instead think of them as temporary glitches on your way to success.
When I am having a bad day, I think of that line from the movie Galaxy Quest: “Never give up; never surrender!” That helps keep me on the right track, mentally.
On days when your body isn’t cooperating and you just feel like crawling back in bed, but you can’t because you have responsibilities to attend to … how do you stay positive? Leave your tips in the comments.
Read Life Dev’s full post on living optimistically here.
I created a few arthritis-related T-shirts and hope that they provide a giggle or a smile. I sported the “My Rheumatologist is My Hero” tee at the JA Conference this past weekend. These shirts are great for arthritis walks, arthritis camps, support group meetings or the gym! Be sure to check back, I’ll be adding more in the coming weeks. In the comments, let me know if there is a slogan that you’d like to see featured!
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