A Day in the Life of Fibromyalgia

Photo courtesy of ChristaSterken.com

Photo courtesy of ChristaSterken.com

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 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.

I LOVE creating words that give people pause – it feeds my soul.

I LOVE my camera. That little window enlarges my world.

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.  And 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.

[Did you catch that?

Regular ol’ life.

Just with fibromyalgia]

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.

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.

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

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?

(By the way, if you’d like to get more interviews about chronic illnesses in your email inbox, you can subscribe to my blog here)

Comments

  1. La McCoy says:

    Great Interview. Great Questions.
    I am really looking forward to this progressing.

    • Christa Sterken says:

      Me too! Chris has a gift, looking forward to the rest

      • I think you give me too much credit Christa. I just asked some questions. You made this great

        • Christa Sterken says:

          I give credit where it is due, and I know you are following God’s leading to encourage others through this series. I am glad to play a part in it. If this ugly story can have a beautiful ending, then honored to share it

        • It’s refreshing to read such a good description of fibro from someone. I get those symptoms and a few more, though fibro and I have been doing the tango for 25 years. And now I’ve been blessed with a baby brain tumor, lol. It is what it is. So you just keep trusting that you’ve put it in his capable hands, and he sees better than I do, so he’ll keep me on the right road, lol.

  2. Tiffany DeOs says:

    What a great interview. I heard about you, Christa, from Kristen (BACH Co-Op) when we were talking about my fibromyalgia. It’s nice to know there is someone local in almost the exact circumstance I am in. 🙂

    • Christa Sterken says:

      Wow Tiffany! Kristen is a long time friend, what a fun surprise! I pray you find encouragement here today…

  3. nhvwriter says:

    I understand Christa’s life completely. I, too, have fibromyalgia and deal with the same struggles she does. And I homeschooled my children, graduating both from our homeschool. Homeschooling with any chronic illness is challenging. Christa’s story is encouraging and helps me remember that I am not alone, and that I can accomplish much even though I have fibromyalgia.

  4. Oh Christa, how I wish I had known what you were going through when you were here! Caught up in diapers and pregnancies, I didn’t see much beyond my own little sphere during that season of life. You are an amazing woman, and I thank you for sharing this. What I deal with physically is in some ways so similar (hands and feet and hips aching on good days–for me this includes shoulders), yet what you describe is also far, far worse in its intensity. When I hurt, I think of you and your positive outlook. You are my hero.

    Chris, what you are doing here is awesome and so needed. Thank you for your wisdom, insight, and your heart for helping those of us with chronic issues to feel not so alone and freakish. 🙂 You are amazing!

    Blessings to you both today! Know that you are blessing many others with your words. <3

    • [Blushing]

      I know what it is like to be ostracized because of what is to us just a part of life. I want to do my part to limit that terrible feeling for others. Education is part of the way forward, but not medical educaiton per se; rather, an education of the fact that we are NOT our illness…we are more

    • Christa Sterken says:

      Rebeca, making me tear up there ♥

  5. Laura V says:

    I feel very blessed to have been part of your life, Christa, where I’ve been able to witness your struggles – and triumphs – first hand. Those many opportunities God has put in our path have shown me what unconditional love and friendship is really all about. Your ability to forge ahead when you are called so strongly to something – homeschooling, a kind gesture for another, motherhood, wife and heart-mate to Art – shows us that God DOES equip us to the unique vocations He has for each of us. I know you’ve had to take some pretty creative approaches to accomplishing all that you have in your life, but the fact remains that – by God’s grace and strength – you have persevered and done it. Thank you for showing the world a closer look from your perspective.

  6. Chris, what a wonderful interview! Thank you for what you are doing! And to you, dear Christa, you are so brave! I feel as though you have so eloquently described MY life! I know it is you we are taking about here, but it is so amazing how similar our journeys have been! I am so glad that you find yourself in a place of hope & peace most of the time. And on those bad days, which I know very well, were no exaggeration, I pray for an extra measure of strength & patience for you and your family! Love to you, my friends!

    • Christa Sterken says:

      So glad you weighed in Lauren, I know that your light shines brightly in your world even with your fibro

    • Lauren,
      My hope in this series is twofold:
      1) To educate those who are ignorant of different illnesses; and
      2) To remind everyone with these illnesses they are not alone.

      I often start to believe the lie that nobody understands the trials I go through with my seizures, and I am so thankful to have other epileptic friends to dash that lie into smithereens.

      I am so glad you connect with Christa’s story!

  7. such a fabulous and heartening introduction to what i believe will be one brilliant series, chris.

    christa, thank you for sharing the truth and reality of your fibro life with such heart and humor. i had tears streaming down my face as i was reading. i particularly love your answer to the final question. god is not in the business of punishing us; it’s always disheartening and frustrating when people take that approach. for whatever reason he chose this journey for you. and it sounds like he knew what he was doing! 🙂

    god is good, today, tomorrow, and always!

    • Christa Sterken says:

      Tim, so grateful that you took the time to read it. That IS disheartening and all too common isn’t it?

    • In one of my other interviews, someone said — “God loves us, but shit happens.” Sounds like a great theology of illness to me. Perhaps not very church-friendly, but then again neither are certain aspects of chronic illness.

  8. Powerful interview Chris! Thank you Christa for sharing your world with us. It is often easier to hide behind “ok” and all is well.. never letting others in. You allowed us a glimpse of the struggle, challenge and the joys that are woven into your life! Hugs beautiful lady !!

    • So true — it’s easy to hide behind a fake smile and a false facade instead of letting folks know where we really are. Like Christa has done here.

    • Christa Sterken says:

      Hey Nancy, trust me I am a master of “ok” and fake smiles too… I am learning to let my guard down. It is hard because there is still that voice inside that shouts “Quit being so dramatic!” Then I have to remind myself, who would choose this? So instead, I accept what it “is” and try to make the most of it

  9. Christa, I had no idea you suffered from Fibromyalgia. As with many illnesses, some people think it’s “All in your head.” I have a friend who suffers from it and it’s certainly real.

    I don’t understand why people question why God would allow something like this to happen. He never promised that life would be free of trouble – in fact the opposite (John 15:5).

    Thank you for your openness and honesty in this interview. I pray those who read will have a better understanding of this disease.

    Blessings,
    Joan

  10. Written fabulously! Thank you Christa for sharing candidly. You have always been my hero. The way you embrace and accept life with all of its struggles and joys. I’m so proud of you for sharing your story so openly! You are truly an inspiration! Thank you Chris for bringing Christa’s story to us all!

  11. Christa Sterken says:

    I’d be curious to know how many of you have people in your world, who feel that their physical challenge limits their feeling of being able to live a rich life?

  12. Thanks for being so real in sharing your story Christa ~ and helping all of us to understand more about what everyday life is for you and your family! I’m inspired by you ! BTW We also homeschooled our kids until Gr.7…then they went to school…but it was the best experience ~ kudos to you for doing it all the way through !

  13. Anastacia says:

    Thank you for being so transparent and honest, Christa. I think one of the biggest problems we sometimes have in our society is just not wanting to talk about our struggles. Perhaps as you said it is fear. I don’t know but I do think we would all do better to listen and learn from each other. Our world would be a much friendlier place if we did.

    • Christa Sterken says:

      Well said! A little understanding sure goes a long way in the empathy department. I am looking forward to the rest of the series to learn about so many things unknown…

  14. Great interview Chris. Thanks for sharing your story Christa. We all understand pain, but when we can understand the pain of others it changes us.

    Chris thank you for shining a light on those who suffer with chronic illness and thank you Christa for allowing us a window into your world. Thanks for showing us how to live inspite of illness and pain.

  15. Wow, Christa. I had no idea that you face such challenging struggles. You’re such a positive light in our online community, I always pictured you with tons of energy. You’re a real inspiration!

    • Christa Sterken says:

      Stacy, your words just encouraged ME! Thanks so much. Some days I do have that much energy, but it usually comes in the middle of the night when I should be sleeping 🙂 I hope what people take away is that no matter our so called “limitations”, we all can still shine for others

  16. I have personally seen Christa live through the pains in her life. And I mean LIVE. She chooses to follow God’s direction no matter how her body tries to dictate her path. I have watched her grow into an incredible woman who truly focuses on taking care of, not only her family, but anyone she finds in need. I am in awe of her strength, dedication to her beliefs, and all of her accomplishments. She is my hero and I am proud to call her my daughter!

  17. Christa, I think the misunderstanding of people must add to how you feel. Am I right? I pray you are surrounded by people who do understand, and that those who don’t will at least extend grace to you, because the truth is, we never know how another person is handling life. I do love your wonderful pictures and I hope to one day embrace life as fully as you do. That was inspiring. Great interview, and thank you for educating those of us who did not fully understand what it’s like to walk in your tired aching shoes.

    • Christa Sterken says:

      What kind words Anne, you are right. There are times of misunderstanding, I worry people think I just don’t want to be with them for example. I hope that there will be better understanding after this series Chris is doing! Thanks Anne

  18. Thank you so much for being so open and honest with us, Christa. I had no idea that you worked through pain with your writing and beautiful photography. Thank you for sharing it all with us.

    • Christa Sterken says:

      Appreciate you reading it Stephanie 🙂 Some days are easy…and the other days? I am learning to be more open about them. Thanks for sharing Stephanie

      • Christa, as you learn to be more open, do you find that people are generally kind-hearted and interested in what happens in your life? This is NOT a leading question, and I really don’t know the answer either.

  19. Christa Sterken says:

    Thank you so much for highlighting this issue Chris! Look forward to the dialogue

    • I think that information is a strong first step toward understanding. I am convinced that, armed with this type of personal insight into the daily lives of the chronically ill, we can change things for the better.

      • Christa Sterken says:

        That is why I am super psyched you are doing this series! I plan to read and share them all… You are made for important work here Chris, YOU inspire me

  20. Beautiful interview, Chris. Christa, We need more sharing of what it really is like with this disease because it truly is one that people believe is “not real”.

    Christa, I feel your pain as I’ve lived it.

Trackbacks

  1. […] the difficulty of having fibromyalgia without the help of its motor. Yes, thankful […]

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  3. […] extends his arm a little further when he sees me start to reach out, as my balance shifts without warning. If I want to lose weight but am having a “chocolate” moment, he brings me some after work, […]

  4. […] Today I continue my A Day in the Life series, which started so wonderfully by a conversation with Christa Sterken about fibromyalgia. […]

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