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Fibromyalgia is a Member of Our Household

July 23, 2014

Every morning this summer my nine year old daughter Julie and I sit at the breakfast table as the sun comes up over the trees.  We chat freely as she gobbles down eggs and sausages and I pound away at the keyboard, but in reality we’re waiting.

Waiting in anticipation.

Within the hour, we’ll hear footsteps coming through the living room and Julie will glance at me wide-eyed. I’ll stop typing and look over to the kitchen door.

My wife Jill will shuffle in and wave slowly to us.  We’re watching her face intently for any giveaway.  Then I’ll ask the question:  “How did you sleep last night?”

This isn’t a flippant question.  It’s one that could set the whole day’s agenda.  My wife imagehas fibromyalgia, and her particular strain of this horrid ailment attacks her most viciously at night:  kicking and twitching legs that jerk and convulse all through the hours.

She’ll either give us a smile or a grim face shake of the head.   The grim answer is usually followed by a description of the night’s battle,  which is usually described in a sleep pattern that is interrupted every forty-five minutes by such extreme pain that she is up and walking around the house or alternating between hot or cold baths, depending on the condition of that night.  If she smiles and lets us know that she was able to sleep, we cheer and face the day with a joy that no matter what else happens, Mom was able to get the rest she needs.

I’ll tell you a secret.  Jill’s had fibromyalgia for over twenty years now.  It comes and goes in its intensity but, believe me, it’s been there.  Can’t begin to tell you how many doctors we’ve been to, from Arizona to Tennessee. Can’t begin to tell you how many remedies we’ve tried.  I might even tell you that there was a local pseudo-medical organization that tried to take advantage of Jill and scam us, using false references and claiming to have access to miracle drugs.  It took every ounce of Jesus’ power to keep me in check as I spoke with clenched teeth on the phone to these charlatans, demanding that they rip up the credit card receipt or face a lawyer before the end of the week.

Can’t begin to tell you how many, many hours we’ve spent in prayer and pleading to God to take this away from Jill. It often affects her thought-process –  I mean, wouldn’t you have trouble putting your sentences together if you’d gone days, weeks in a row without more than three hours of sleep at any night?

We kept this a secret for years, mainly because fibromyalgia was still a puzzlement to the medical world, and each diagnosis raised more questions than gave any answers.  We’ve gone through our savings trying to find an answer.  We haven’t had a vacation in years – how could we afford one?  How could Jill enjoy a night in a hotel or vacation spot if she can’t sleep?  I fly solo to all of my speaking engagements, dearly wishing I could bring my wife, but it’s just the reality of the condition she has, and we’ve accepted this for over two decades now.

What was hardest was the cruelty of some folks.  And I mean other Christians.

It was actually when I was on staff at a church years ago.  Numerous times good-natured people would ask us to dinners, a gathering, or a party.  Because of Jill’s acute pain we often, so often, would have to bow out with a phone call and a polite apology – could we possibly make it another time?  Jill was embarrassed by it, but it didn’t bother me greatly – it was something we lived with. We kept the fibromyalgia a secret.

But then we started hearing snide comments.

“Don’t invite the Zockolls.  They’ll promise to come but they’ll always cancel.”

“Brad and Jill will say they’ll be there, but it’s just talk…”

“Zockolls can’t keep their word.”

And so on.

Oh, how those comments hurt, coming from people we trusted as friends.

Thank goodness we now attend a church of compassionate people who understand Jill’s limitations.  Jill can freely express her inability to attend a meeting or event, and thank the Lord, Christian folk are very supportive.

We’ve adjusted to God’s direction with fibromyalgia in the sense that as the Apostle Paul says, “when I am weak, then I am strong” because we have been able to reach out to people who suffer problems and limitations – we’ve been there.

Paul also says that because Jesus is exalted in the midst of the trial, “I will glory in my infirmity.”  I cannot speak for Jill and so I cannot say that I glory because of her infirmity, but I can say that we’ve been made much stronger in our faith and in our testimony because of this battle.

And we often deal with it in a Zockoll way.

Let me give you an example.

Two weeks ago, Jill was preparing Julie for bed one evening, and her hip started hurting furiously.

“Brad, if you’ll just help me.  My hip seems so out of joint – could you get a hold of my ankles and pull to release the pressure?  I’ll lay on my back here on the floor.  It feels like my upper leg is pinched against my hip joint.”

She sprawled on the floor, and I grabbed her ankles.  “You want me to pull?”

“Yes… well, no.  Lift them up.  Loosen the leg and hip joint.”

Julie was watching with interest.

I frowned.  “Lift them up?  How high?  I mean, really raise them up high?”

She lay there and nodded.  “Yes, just … pull.  Lift up my legs, and pull my hip  – or my leg – back into joint.”

I started lifting her by the ankles.  She nodded.  “That’s good, I can feel the pressure lessening.  Can you lift higher?” Her hips were off the ground.  She motioned for me to lift higher.  I had a vise-grip on her ankles, and was literally lifting her off of the floor.  It looked like I was going to hang her up on a coat rack, upside-down.  Julie was wide-eyed.

“Daddy, don’t drop Mom!”

“Well, look, Julie, I’m certainly not going to drop her…”

“No, Julie, Daddy’s doing what I asked. My hip feel’s like it’s going to pop open and get rid of that pressure.”

I was lifting her upside-down, now grasping her knees and lifting higher.  She motioned for me to lift her even higher.  Her head was now just about off the floor.  “Yeah, that’s it,” she yelled.  We looked like a circus act.  I almost stumbled, so I grabbed the nearby cupboard with one hand and heaved upward with the other arm.  I looked like the opening act in a Buster Keaton-era  lunatic strongman sideshow.

And Jill, now upside down, let out a bellow.  She started laughing loud and long.  “Don’t drop me!  Don’t drop me!” She yelled while holding her hands to the floor in an attempt to steady her head.  Sweat was beading on my forehead.  “Has the hip popped open yet?”

“Daddy, don’t drop her!”

“Julie, I’m not going to drop…”

“It popped!  Now let me down and watch out for the corner of that bedpost!”

We fell in a heap and burst out laughing, all three of us.  It was such a ridiculous scene that you couldn’t help cracking up.  I’m glad nobody had a camera.

But that’s what fibromyalgia has done to our home.

It’s humbled it. It’s slowed it down.  And it’s made it hilarious at times.

And it’s deepened my love for my dear wife Jill.

 

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14 Comments
  1. Thanks for this window into yours and Jill’s world, Brad. I knew she had fibromyalgia, but it’s one of those “mystery” illnesses I didn’t know much about.

    Laughter sure does help, doesn’t it? My husband is a master at applying humor to lighten various situations.

    I hope and pray Jill has as many good days as possible and experiences much grace for the not-so-good days.

  2. Barb, thank you for the kind words. Jill had a good visit with the chiropractor yesterday – brutally painful, but she seemed to think it may have helped. Please pray for her. She goes through bouts of intense suffering.

  3. God bless you guys! I’m so glad your wife has a family who doesn’t discount or belittle her very real pain…sometimes that’s even worse than the pain.

    • Thank you, dear friend. Thank you for your kindness. May I also say that I truly enjoy reading your blog. You have great insight!

  4. I pray for Jill, I know several people with this crippling illness. Petra deals with it every day also. Thankful you felt comfortable to open up about it, it is hard to be ill for many years. I have dealt with the inability to go out many times :). Don’t worry about other people, ignorance of situations can cause faulty remarks.

    • Thanks for the encouragement. As the spouse of a fibro sufferer, I didn’t realize the issues I had to deal with as well. I needed some private counseling myself for awhile to deal with proper handling of this issue, both for Jill and the family, and for myself…

  5. Thank you for sharing! I understand – I have fibromyalgia too, and it ain’t fun or pretty. It’s amazing what God can teach us through our struggles. Praying for Jill, for sure!! ❤

  6. ChrisMcD permalink

    Brad, Shirley suffers with it too but not to the degree that Jill does. I agree it’s hard for us spouses to understand sometimes. One thing that helped Shirley some is when we bought a hot tub secondhand a few years ago. That can sometimes give her some relief.

  7. Margaret Sobie permalink

    Hi! I am Margaret, Meghan Farrow’s mom. Just wanted to let you know that I completely understand your post. I have had fibro in varying degrees since 1994 after a car accident. I very much understand those first few minutes of a new day – can I do what I planned or is this another pajama day? I will be praying for you, your wife and family. Praying for a treatment that helps. Also, Meghan has forwarded me some of your posts about your church, your Pastor and the tough road ahead. I was in the services last Sunday morning. The Spirit is very present and I was blessed by the services. Thank you for sharing these thought so others can have a better understanding of how God is leading this special congregation.

    • Hi Margaret! I will add you to our Fibro prayer list. Thank you for your prayers for us, as well, and please continue to pray for our church and especially for Tom and his family. This is an important time for all of us.

  8. Becky permalink

    We relate. That is what fibro has done to our home too! So thankful for you both!

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