Disowning Fibromyalgia

I’d rather say yes than to turn down an invitation to talk about the “Leora stories.” The latest was for a group in the evening and an hour out of town. These days, I need to say no. 

Dealing daily with fibromyalgia is something I don’t like talking about, but last spring, I was invited to interview on PJNET. For new guests, the host does a trial run to make sure of computer connections and to get acquainted. When we went on the air, I expected to talk about Leora’s Letters, but the first thing he brought up was the fibromyalgia.

He said it’s part of my story. That I’m writing in spite of daily challenges.

I needed to think that through. It’s been part of my life for more than two decades. I know that God is with me in this. Mostly house bound because of daily symptoms, I guess I’ve tried to disown the suffering. When pain and exhaustion set in about every 3-4 hours, 25-minute nap usually calms them down. Yes, that’s three naps a day. Even in between, I don’t feel well enough to write, but sometimes, an hour or two a day, I’m lucid enough to tackle it.

The Onset

Before the onset of symptoms two decades ago, I wrote regularly and began getting paid for essays and articles. My goal was to eventually share the Wilson family World War II story, but I needed to learn to write, so I attended the summer writing festival at the University of Iowa several summers. 

I regularly journaled first thing in the morning, including prayers. Some of those prayers during the 1990s included the Wilson family stories. One was that someday people might want to see where the stories took place. I remember thinking that was an audacious prayer. Who did I think I was, Laura Ingalls Wilder? (That’s what we fans have done, visit the places she lived.) 

In 2001, I went downhill physically. Exhaustion. Pain–joints, bones, muscles. A painful bout of shingles. As the horrors of 9/11 were played out on TV, I watched with a heating pad against my afflicted ribs. That fall I gave my last program for a group of women.

The Miserable Middle Years

There’s no test for fibromyalgia, but that’s what the doctor listed. About all she could prescribe was something to mask the pain. I’d read that sufferers are usually women and that the condition lasted an average of seven years. 

Brain fog set in as well. On my worst days, I couldn’t read or write. Sometimes the goal for the day was to take a shower. I begged God to heal me, reminding him that I’d certainly be more useful if he would.

I was sensitive to loud sounds, lights, music, and watching TV became impossible. The basement steps were a challenge, and getting into the bathtub was scary. Getting dressed to go anywhere was an ordeal, with extra discomfort for the next couple of days. So I mostly stayed home. Walking very far was hard. So was standing to do work in the kitchen.

As my husband (Guy) and I settled into how much I could tolerate, we realized that long trips were a thing of the past. 

Sleep apena is also part of my story, as are several unrelated surgeries. I was still in the hospital after the worst one, for diverticulitis perforations, when God reminded me of his presence. Even during those darkest hours of misery, he was alongside. 

These Days

About four years ago, the brain fog began to lift. My heart and head returned to the WWII story. Robin Grunder eventually helped shepherd it to publication. Right before it came out, all five Wilson brothers were remembered on the Dallas County Freedom Rock. They asked if I’d speak at the dedication. I gave two talks that month (October 2019) for the first time in 18 years.

But still, the more times I need to get into and out of a car for errands, the longer recovery time I need. I’m so thankful that my husband Guy does floors, chauffeurs, does the grocery shopping (all of it since my shoulder replacement in 2020), and everything else. 

With lots of prayer and help, I’ve managed to self-publish two “Leora books,” and the third is due out next month. I am so amazed and humbled at this. One program or book club a month is about all I can handle, since it means “saving up energy” ahead of time, then a few days to recover afterwards. 

Is there purpose in all this pain? Have I been trying to deny something precious? What if fibromyalgia is God’s way of getting me to stay home and write the stories no one else can? Grandma Leora’s stories? I’m grateful and humbled. 

What if I’m to share about suffering, about living (and even thriving) in spite of pain?

I certainly have discovered blessings while feeling crummy. And because of fibro, I have a circle of encouraging internet friends I’ve never met. What a blessing! 


. . . We rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope. – Romans 5:4-5  


I’m in the endurance stage, and I’ve got hope. Whether I’ve developed character through this is up to God, as is whether I’m able to write. Or anything else. Praise God from whom all blessings flow!

 

26 comments

  1. I watched my mother-in-law go through fibromyalgia and my heart goes out to you. You’re a strong woman (good Iowa stock, right?!)

  2. What an encouraging post! It’s encouraging to know that God uses us in spite of (or is it because of?) our weakness. When we are weak, He proves Himself strong. You post is a reprimand to me for all the times I’ve failed to write even when I’m not suffering such problems as you face daily. Thanks for this gentle nudge to stay busy for Him, doing what He’s called us to do, regardless of circumstances.

  3. Thank you for sharing this part of your life with us, Joy. I am particularly struck by this statement: “What if fibromyalgia is God’s way of getting me to stay home and write the stories no one else can? Grandma Leora’s stories?”

  4. Wow, interesting-
    There’s a cosmic thing going on here. Health issues pop up and how to deal with it. People all have lives we know nothing about. And we search for ways to go on. Good for you, Joy!

    • Thank you, Deb. At the Cedar Falls Christian Writers Workshop, I had to mosey to my cabin twice a day for a nap! I just didn’t talk about it, but guess maybe I should. hmmm

  5. Thank you for your story. You have a wonderful perspective by God’s grace. It was tough to read how painful everyday life has been for you. So glad it is better than it was and that Guy has been so loving and patient. Thanks again.

  6. Thank you for sharing your story. I must admit I was quite ignorant on what fibro entailed for it sufferers. I now have a better understanding. It really helps and reminds me to be conscious of those around me that are silently suffering with something I can not see ~ your amazing! So glad you are out of the fog too!

    • When I told people what it was like long ago, I’d get comments that everybody gets tired sometimes, and that I looked “normal.” Hmm, they don’t say that anymore. ha

  7. I’m grateful that you persevered through all that to gift the world with your books. These stories of love, hardship, and endurance need to be told; real life, real people, and real places. I have been blessed both in reading (and hearing) your stories, and in the encouragement you’ve given me through our online friendship. You and Guy are in my prayers for better days.

  8. I’m so sorry you have to deal with fibro, Joy. My aunt had fibro. I have Hashimoto’s disease. I understand pain, brain fog, no long trips, and exhaustion. Praying for you.
    It always amazes me how God can take our weakness and use it for His glory. I’m glad you’re publishing your stories!

    • I had to look up Hashimoto’s disease. I’ve taken meds for thyroid for decades, and am so thankful for modern medicine. . . and social media! Without them, we wouldn’t even be able to share with each other. God bless you, Gail. Thank you for your note.

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