Redefine Normal // Rediscover Hope

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A Day in the Life of Fibromyalgia

Christa Sterken is my first interview in the A Day in the Life of… series. And honestly, she is one of my favorite people in the world. She is like the sister I never had, and I am sure we would argue over who was the little sibling between the two of us. (I’m the big brother). Christa also has fibromyalgia.

As someone very unfamiliar with this illness, I think the way she describes it is very visual and powerful

Fibromyalgia is a disease of exclusion. A neuromuscular disorder characterized by pain along certain pressure points, insomnia, and/or debilitating fatigue.

Some days are pretty pain free. On the easier days, I just hurt in the hands or the feet or hips. More like a bad sprain or cramps. I often find myself shaking my hands or trying to stretch my fingers. I can’t enjoy sitting still for more than a few minutes. Movement is better.

On the bad days, imagine getting hit with a baseball bat. All over. Then add the flu. Then imagine a charley horse, you know that pain? Now, imagine that from your toes, literally up thorugh your neck. Every single part of your body feels like a charley horse that doesn’t let up. Sometimes for hours. Then add random spots that feel burned, but there is no redness.

You can learn more about fibromyalgia here. Christa also recommends two other resources:

  1. FibroWHYalgia: Why Rebuilding the Ten Root Causes of Chronic Illness Restores Chronic Wellness is the best book Christa has read on the topic in two decades.
  2. Peace in the Storm: Meditations on Chronic Pain and Illness will bring encouragement, no matter where your pain comes from.
Christa is so much more than her fibromyalgia. I asked her to share something she absolutely loves and wants to share with the world. I expected her to talk about something she created, maybe offer everyone a chance to buy a product she created. Instead, she told me this

I LOVE creating words that give people pause – it feeds my soul. I LOVE my camera. That little window enlarges my world.

I LOVE what Home represents. A safe place, a refuge, a sanctuary. I never take for granted that our home life is not the norm for everyone. I appreciate that we can create beauty that feeds our soul out of so little.

I LOVE family, and have spent many years embracing the choice to say, “Staying home with my kids and enjoying being a wife is a good, worthwhile and Godly pursuit. I don’t have to have a career outside the home to ‘matter’.”

I LOVE the lifestyle homeschooling affords. Never, ever in a million years would I have pictured myself where I am today. God knew what I needed long before I imagined it.

Now, we will move into a more classic interview style, where I ask a question and Christa answers.

What do you wish people knew about your condition?

Looking “normal” on the outside is not indicative of what is going on within. It is a blessing to be able to move forward with a smile, but it is always a choice. Some days are easier. But please, never assume I am fine just because I am smiling or wearing makeup. What it took to get here? It might have been more of a psychological struggle than is possible to explain.

I wish people didn’t worry about me. I’m stronger than they know and I’m a survivor.  

Ultimately this won’t kill me, because it’s not a progressive disease.

The most important thing I miss out on because of fibro is life! If I say I’m going to be somewhere and cancel at the last minute, I feel terrible about it. I would never do it unless things are really bad.  I want people to never take it personally when I cancel getting together. It’s never personal.

What are some phrases that people use when talking to you, that you wish they would just stop using?

Have you tried [fill in the blank]? The answer is Yep.

Any statements that insinuates somehow I can “outthink” this. Or take another vitamin, read a book, exercise class, etc., etc., etc.

Also, this is not a blessing for my family. They do so much extra. My husband is bordering on sainthood for the help he has to give me. And yes, it is true my children learn compassion by having me as their mom, but living with me like this is all they know. They are tired of hearing about it and I am sure don’t feel blessed by it.

What are the biggest challenges with your condition?

In my mind I am a triathlete. Then, there is reality.

I can’t afford the pain meds anymore.

And even more so? Wanting to be part of people’s lives more than I can, worrying they think that I set all the boundaries for our relationships. That they might not understand the necessity. I have to spend energy preserving energy.

What are some struggles nobody sees?

What is behind the front door. Behind the smile.  

When I first became ill, it consumed a large portion of my life, trying to figure it out. Then I learned to hide the truth, or deny it, because (I believed) most people really, truly didn’t want to know.

I have since learned this is not the case. My world is actually full of people who genuinely care. Yet the lie still resurfaces from time to time.

Many, many days are spent lying down. I have three heating pads and a heated blanket. Oh the bad days? I can barely get up the stairs. My husband had to install a handrail on the stairs for me, and I use it every time. Sometimes I have to crawl up. On those days, I take my meds, close the curtains, adjust all the heating pads and lay there, suffering.

These days are hard emotionally as well. I strive to thank God for everything I can think of, to pray for others. Otherwise I would just weep, and some days I do because I feel like this is a waste of life. That I am a horrible mother, a terrible friend, a mediocre and needy wife.

Give me a snapshot into a day in your life.

Most days vary, being a homeschooling family. The more I come to terms with my health, the more I try to keep as regular of a schedule as possible.

Mornings are often rough. On a good day, I go for about a mile walk, and get ready. If we are staying home, I try to get my writing projects done in the late morning. After catching up with my kids and their school progress, we chat and enjoy lunch together.

Early afternoons I try and leave open for school. After that I am free to make phone calls, do errands, etc. Maybe fit in more writing. Definitely try and rest before dinner. On the busy days? We are running, doing life. Taking kids places, meeting up with people, regular ol’ life.

How do you want people to interact with you?

Don’t look to catch me in a fib about how good I feel. I mentally NEED to be good. Let me go with it.

Just accept me as I am, for what I can give.  Don’t guilt trip me, I do that enough to myself.

If you don’t hear from me in awhile, please check in. You can’t imagine how much the little things really do mean to me. How grateful I am when someone makes dinner or sends a note or little gift. It is beyond words how encouraging it is to know someone’s thinking of you when you’re laying there hurting. That we are not fighting the battle alone is invaluable gift.

What are some accomplishments you are proud of?

What comes to mind immediately, is graduating my oldest daughter from homeschool. We went against the flow, and I had to learn to fight for the life we knew was best for her. It wasn’t easy to be confident when people were waiting to see you fail. When she walked across the stage? It was like a lifetime achievement award.

When I completed the Christian Writer’s Guild program and went to my first conference. Totally out of my stay-at-home mom mold and my first “big girl” professional experience.

I am proud of my little blog when people tell me my words move their hearts. When my pictures give life to objects.

How do you reconcile whatever faith you have with your condition not going away?

You know, I hear people say, “How could God let this happen to you?”  I have no use for that. I don’t think that way, honestly, for as much as this sucks – and it does – I have learned so much about myself. I have learned even more about God’s faithfulness, how to rest in his presence, and how to have greater compassion.

I am grateful for those lessons, and I mean it! Would I choose this? No, of course not. Do I believe God is using it anyway? 100,100,100 %.

I pray that someday I will be freed from this, it often feels like a prison. But until then? I thank God for letting me see the beauty in these ashes.

I always feel like I have no room to complain and I thank God for giving me something so small if I have to suffer.  I look at people who go through other circumstances and realize I have so little to complain about.

Some people think I have a Pollyanna attitude but really I have so many wonderful days – and on those days? I guarantee you I live life to the fullest.

Christa will be checking in here regularly, so now it’s your turn — what questions do you have for Christa?

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