Author: aggiefan80

Let me just put this right out front. This post is about my faith journey with Fibromyalgia. Feel free to bail out now if this topic is not your cup of tea, because I’m passionate about my faith and make no apologies for it. I will not be offended and would much rather you opt out than try to debate me in the comments. My faith is not debatable.

Most of us go through life expecting it to be fairly predictable. When a diagnosis rocks our world, it’s easy to ask, “Why me?” Devoted believers and those not so prone toward religious faith, often default to this question. Don’t beat yourself up for asking it. I asked the question, had my little pity party and then God gave me a swift kick in the butt. He reminded me that I wasn’t exempt from trials and that He would be with me and use this one for His good. Yes, I felt a little chastised, but I knew for certain that He was my rock and I would need to lean on Him on this journey.

For those who don’t understand the impact that Fibromyalgia can have on a person’s life or quite frankly, don’t believe it’s even a real condition, this may seem like an extreme reaction. Because I wasn’t just told that I had cancer, a heart condition or any other life threatening condition. Fibromyalgia wasn’t going to kill me. This is true, but it certainly had the potential to drastically change my life, in ways I couldn’t even imagine at the time. I will forever tell people that no one, and I do mean no one including doctors can completely understand life with Fibro unless they have it themselves. This is one reason that after several years of only sharing with close friends and family, I decided to start this blog. The only way to help others appreciate Fibro’s impact is for those of us in the trenches to be more transparent. Living with an invisible illness means being unseen and unheard most of the time. If I hear “You don’t look sick” one more time, I will scream. I’m so tempted to reply like the meme says, “I don’t look sick? Hmm…you don’t look stupid either.” I’m going to opt for screaming and let them think whatever they choose. The other catch phrases that push my civility and kindness to the test are: “If you just _____, you will feel better.” “Just go to the doctor.” And…..”You’re not better yet?” Jesus, take the wheel and silence me! While I appreciate the concern, they just don’t get it. If you’re reading this as a friend or family member of a Fibro warrior, I hope you will take this as a strong reminder before you repeat these phrases, rather than being offended by me expressing my feelings and probably those of your Fibro person.

So, after my pity party and wake up call, I got busy digging deep into scripture to find strength. I wasn’t cracking open a brand new Bible. I had spent time in scripture for years and I knew that would be where I would find the peace and strength that I would need. If any of you have seen the movie, War Room, you will understand when I tell you that I began writing scriptures on index cards and taping them on the wall inside my closet. I wanted to be reminded of His strength and grace throughout each day. This simple gesture has made a powerful impact in my walk with the Lord down this Fibro path. Reading those scripture cards and writing them on my heart has given me an arsenal to strengthen my battle.

Today’s devotional reading led me to 1 Thessalonians 5:16-18. As I read it was as if the word Fibro was a flashing strobe light on the page. Everything about this scripture spoke to me and my situation. It reads: “Be joyful always, pray continually; give thanks in all circumstances, for this is God’s will for you in Christ Jesus.”

Our feelings or circumstances should never determine our level of joy, prayer or thankfulness. That’s a hard pill to swallow for many of us, but it’s true. Bad things are going to happen to all of us, but God…. We can still be thankful for the good that God will work out using our trials. After visiting with other Christian friends and listening to my favorite Christian speakers, I know that no matter how strong our faith foundation may be, there will be times that doing what God requires here will still be a struggle. He knows that and gives us grace as we strive to follow His lead.

I’ve always loved music so I dove deeper into Christian music as another way to tap into my faith source. I blast praise music in my car and on my headphones. Other days are filled with hymns or gospel music. It all depends on my mood and my pain level. No matter the genre, I come away filled with hope and a feeling of renewal.

Psalm100:1-2 tell us to “Shout for joy to the Lord, all the earth. Worship the Lord with gladness; come before Him with joyful songs.” If you happen to pass me on the highway and I look like I’m having a seizure, hopefully I’m just praising my Lord for His goodness. If I swerve to much, please force me to the shoulder and check on your girl.

Prayer. A word that still intimidates me sometimes, until I remember that I can just talk to my friend, Jesus. If you’re eloquent and prefer fancy words, go for it. I’m much more comfortable pouring my heart out to my friend. However your prayers sound or look, just talk to Him. I know that He already knows every single thing about me, but He has told us that He longs for us to seek Him in prayer. He’s literally waiting to hear from us.

Philippians 4:6-7 tells us “Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.”

Sometimes I cry out in pain begging for relief. Other times I thank Him for getting me through my latest flare or even one single symptom. Recently, I had the privilege of babysitting our grandson. He is teething so he was fussy. As I rocked him to console him, I realized that he wasn’t the only one being consoled. Singing Jesus Loves Me and praying over his precious little body gave me such peace and joy at a time when his GiGi was actually tired and aching. God meets us where we are if we will simply reach out to him. I do have designated prayer time, but sitting in that rocker praying and singing was a holy experience. No matter the prayer, He gives me peace. He guides me through discernment when I have decisions to be made. He gives me strength to keep going day by day.

Please do not discount the power of intercessory prayer. One of my biggest comforts is knowing that I have strong prayer warriors interceding for me. James 5:14 tells us “Is anyone among you sick? Then he must call for the elders of the church and they are to pray over him, anointing him with oil in the name of the Lord;” Whether in person or long distance, anyone can pray on behalf of another human. My prayer family has held me upright when I literally could not stand during a crisis in my life. They continue to pray me down this Fibro path and feeling their support encourages me to stay strong.

Digging Deeper can mean so many thing to different people, but for me it means, scripture, music and prayer for the journey. I will forever be thankful for the gift of faith that I received from the Lord. It’s my strength today and every day.

First of all, I’m still here. Yes, it’s been quite some time since I posted. Let me just throw out a few familiar words as my explanation: Covid, Life, Fibro, Uninspired… Can anyone relate? Anyway, I’ve had time to do a lot of thinking and learning, so that brings me to this post.
The doctor said the “F”word. I heard it but I certainly wasn’t comprehending my future. I had read just enough to help me relate to a friend and colleague suffering with Fibromyalgia. I had no idea the extent that this chronic illness would invade my life. Boy did I have a lot to learn. My body was teaching me and I had no choice but to listen to it. It was screaming at me from every direction. I also dove into my version of research as a self-proclaimed “Google Doctor”. The internet is full of symptom lists and every possible remedy or cure imaginable. The most frustrating thing is the individuals and companies that prey on Fibro patients’ desperation for relief.
Believe me, I’m encouraged often by well meaning family, friends and even strangers to just keep searching for a cure or to try something they’ve heard about that will “fix me”. I do appreciate their concern, whether it is rooted in lack of understanding and misinformation or in their genuine concern for my future. They cannot fathom the old me accepting a life sentence of daily widespread burning, aching pain, brain fog, fatigue, digestive issues, depression, headaches, sensitivity to scents and light and more. Neither could I upon diagnosis, but the reality is that my chronic illness is not going anywhere.

Lesson 1: There is no cure.
Doctors can prescribe medications to treat individual symptoms. Some of the work for some people, but not for others. I make the choice not to risk my liver again, by depending on maintenance meds. It’s a personal choice for my health and one that each person must make for themselves.This may seem like a defeatist attitude, but it is actually reality and acceptance.
You may find temporary relief in some of the companies’ promises, but the actual chronic illness currently has no cure. After coming to this realization, I moved on to the coping piece of this “F” puzzle.

Lesson 2: Coping is a multi-level approach.
Honestly I’m often a wreck. Sometimes I cry in the fetal position. Sometimes I pull the bedcovers over my head. I share this, not for sympathy, but to say that some days require such a fight, that this is the best that I can do. Yes, these are coping mechanisms just like the following list.
Faith.
Pure grit and toughness.
Counseling
Meditation and deep breathing techniques
A high pain tolerance
Support of family and friends.
Self-reflection.
Gentle exercise when I can tolerate it.
More faith, because in the end, I know who’s in control and it’s not Fibro, my friends. Since this is my blog, I can openly express the level that faith has payed in my daily fight. Trusting God to never leave and to be with me in the good times and the roughest times keeps me always looking to Him. He is my rock and my shield in this fight.
A combination of these methods keeps me fighting every day.

Lesson 3: Chronic illness fighters ARE warriors.
The reference to chronic illness sufferers as warriors seemed at first a bit extreme. After waking each day from a restless night of pain to face a day of the same, I now wear the title Fibro Warrior with pride; not selfish pride, but motivating pride. Pride in the fact that I keep fighting through my circumstances every day.
I titled my blog I Am Not Fibro because Fibro has changed me, but I am still me.

Lesson 4: It’s easy to lose yourself in this fight.
My focus on keeping it together mentally and emotionally and handling the pain makes me more quiet and introverted. The sensitivity to multiple stimuli (light, sounds, smells, and even touch) means that I’m tense almost all of the time. It takes so much of my already depleted energy to keep up the fight.

Lesson 5: Chronic illness warriors are actors and actresses.
I’m not acting sick. In fact, I’m acting well many times when you see me smiling and doing every day activities. I have to work hard not to get hyper focused on dealing with the daily symptoms. It literally feels like my body is fighting itself and I am caught in the crossfire. I find myself withdrawing from conversations, shared activities and even hobbies that should help me relax. Although I appreciate invitations to get together, I may or may not participate when the time comes. I also may need to excuse myself from activities for self-care.

So, yes. I have Fibro. It is chronic and there is no cure. Yes. I am a warrior who fights this every single day. I know I am not alone. I am a card carrying member of the chronic illness society. I don’t share for pity, but to inform and relate to others in my shoes. I honor all Fibro warriors and those of you with different diagnoses, but similar symptoms. No one outside the society can completely understand. However, if you have supportive family members and friends, consider yourself blessed as I do.

Ambiguous: (adjective)

1.Open to more than one interpretation

Being defined as ambiguous is uncomfortable for the control freak in me. If there’s anything I would rather not be, it is ambiguous. I’ve always loved distinctly clear lines. Maybe that explains my passion for staying within the lines of my coloring book drawings and staying between the yard line hash marks on the football field that delineated our marching band’s perimeters. For whatever reason, defined spaces have always given me comfort and peace. I bounced from one wall of my life to another like a game of This Is Your Life (bumper car version). My life made sense. I had mastered reading myself and knowing just how far to push my boundaries.

There were very few “ifs” in my life. If I committed to doing something, you could count on me. If I told you I would be somewhere, I would be there. I was dependable and predictable. To some, this may seem like a life in need of some excitement. To me, it defined my peace. In the midst of what will from now on be called “PFM: PreFibromyalgia-before I had Fibromyalgia”, I was thriving and motivated by my self-perceived control and the sameness of my life. I’m old enough to recognize the Stepford Wife inference here. Anyone else willing to admit that they do as well? Either way, life was good because I felt in control. I could read my body like a romance novel; cover to cover in one sitting.

During November 2016 I became ambiguous. Little did I know that this would be my new normal. Whether others believed my diagnosis to be fact or fictions I knew what I felt and how my life had suddenly changed. I heard myself making tentative commitments, followed by disclaimers and qualifiers. “I plan to be there IF I’m feeling up to it on that day.” “I’ll do my best to be there.” “Do you have a backup just in case I cannot make it?” Being a FM warrior is a recipe for isolation, even when we try our hardest to remain connected. We make plans that we’re so hopeful to keep. We wake on the day immediately assessing our symptoms to decide whether our plans will carry on or be cordially declined. This decision has been known to be made as late as upon arrival to an event. Yes, I’ve pushed myself to get dressed for an event that I then promptly had to decline and leave due to the exhaustion of the previously mentioned preparation. People see the put together look, never imagining the work and often pain behind it. They can’t understand why we excuse ourselves from crowds, seem to zone out in especially noisy environments or even why we leave events early. Only a person with a chronic illness can appreciate the many thoughts racing in our heads. While others make small talk, we’re negotiating with our bodies for just a few minutes respite from these very concerns.

So, ambiguity, I begrudgingly accept you, but I do not welcome you. You keep me guessing as to how each day, and sometimes each hour may go. You stir up feelings of guilt and disappointment. You foster frustration and sadness for the life that I once had. The life that I visibly appear to still have. You plant concern, questions, and confusion in the hearts and minds of my friends and family. They try to understand and believe me, as they stand on the outside of my life staring as into a storefront window that is a huge vending machine that doesn’t work properly. It’s a whole different world inside the Ambiguous Store Machine. They put their money (love and support) in and push the button of my life. They never know what they’ll get in return. Some days are Snickers bar days. Others are more like the petrified gummy bears that have been in slot C3 all year; hard, flavorless and non-refundable.

We all deal with changes and surprises in life. How we deal with them determines what we gain from the experiences. I know, without a doubt that my faith in God gets me through all of the changes in my life. He knows what I can handle. He knows what lessons I need to learn. He knows me, inside and out. He didn’t allow Fibromyalgia to change my life for no reason. My hope and trust is in Him. He hands me ambiguity. I give Him more trust. He throws a curve ball. I adjust my swing. On days that I strike out, I know I can still trust Him to walk with me to the dugout and coach me up for my next at bat.

I am not a fan of ambiguity and probably never will be honestly. It has, however, taught me many lessons about myself and other people. My compassion, empathy and understanding have grown exponentially. We never know what people are going through. I’ve learned to show them more grace, than PFM. There’s always someone in a worse situation than you or me.

Everything about ambiguity is a question. I prefer to own it by restating it as my own question: “Whatcha got for me today Fibro? Bring it on! I’m ready for ya!”