"Curl up like a little girl and cry."
This was Brad Carlson’s* tongue-in-cheek response when I asked him how he deals with a flare. Then he got more serious and said, "It feels like it makes your life stop."
Describing a flare
"Some people have different names for a flare," Brad said. He explained that it seems to depend on the context and the severity of your illness. For those who have more moderate disease, a flare can be located in one joint and not interfering too much with your life. "For some, you take a pill and go to work. For those of us who live with severe RA, 30 pills a day barely gets you through. A flare makes you need a Medrol patch or shot."
Brad explained how a flare impacts someone who has severe RA. "A flare takes over your life. RA is bad enough every day, but a flare ups the ante." For him, having a flare means "a week of being out of it and hurting, curled up in bed or recliner, letting the world go by. It’s a depression. You don’t have the want or desire to do anything." Brad mentioned that one of my older posts hit home with him. In it, I describe crying in the shower every morning from the pain. He said, "it can curl you up and bring tears to your eyes. That’s a flare to me."
Coping with a flare
Brad sees a flare as similar to the green blob featured in the commercials for a popular cold and flu medication. "I think of them like that. As a cartoon flare sneaking up on you."
Brad calls his bedroom The Flare Room. "I escape to it when I have a flare. I have a power recliner, a TV, a computer. I wrap up in a blanket and stay away from the world. I watch mindless TV as a distraction, let it run its course, and try to not dwell on it."
As we talked about flares and how to cope with them, Brad kept coming back to the idea of distraction. He said that finding a way to distract himself from the pain allows him to "isolate it, to go somewhere else" in his mind.
Distraction also works for lesser flares and it can take many forms. For Brad, nature is a big healer. So are his dogs. "It’s hard not to feel good when a dog is giving your puppy eyes. They cuddle up to you, know the difference when you’re not feeling well."
For Brad, finding something outside himself, something that is joyful, helps him to separate himself from the pain and flare. As you may have seen in the Live Bold multimedia story of Brad and myself, giving back to the community is one of the ways that Brad copes with RA. "It helps you to help someone else. Someone saying thank you is the biggest thing you can get."
Preventing a flare
Sometimes, flares are unavoidable and you just have to get through them. But Brad emphasizes the importance of prevention. "If you feel a flare coming on, listen to your body. Curb what’s going on, such as a social event. It could keep you from going into a major flare." We both agreed that when the signs of a flare start appearing, it’s important to "sit down and take it easy or your body will make you."
But how do you recognize the signs of an impending flare? "It’s about experience," Brad says, emphasizing that the longer you have RA, the more you get a feel for it. "You can break the cycle once you know the signs." That’s especially important for him, given that he lives with severe complications from RA. "I have RA lung. If I don’t listen, I’ll wake up on a ventilator."
Brad also emphasized the importance of your loved ones in helping you prevent flares. His wife Laurie "can tell by looking at me. When ‘I’m okay’ means I’m not. Thank goodness she can." In fact, Laurie’s ability to read the signs of an impending flare saved Brad a few weeks ago when he went into respiratory arrest.
At the end of our interview, Brad again touched on the problem of broad labels, such as the moderate to severe designation of RA. He believes that "it should be broken up into ten stages." I think he’s right. A more nuanced approach to defining RA and RA flares would give everyone from doctors to people in the community a better understanding of the impact different people experience.
How do you cope with flares?
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* Brad Carlson is a writer on the RA site. Due to the severity of his RA, he has trouble writing. He now contributes through interviews or slideshows.
Lene writes the award-winning blog The Seated View. She’s the author ofYour Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain and 7 Facets: A Meditation on Pain.
Lene Andersen is the Community Leader for HealthCentral’s RA Community. Lene (pronounced Lena) is an award-winning writer, health and disability advocate, and photographer living in Toronto. She’s written several books, including Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain, and 7 Facets: A Meditation on Pain, as well as the award-winning blog, The Seated View. Follow Lene on Twitter @TheSeatedView and on Facebook. Watch her story on HealthCentral.