Uncertainty in Fibromyalgia and Chronic Illness

Today we have a wonderful and eye opening post from Cassie Creley.

Cassie Creley lives in the Pacific Northwest and loves writing. Dealing with multiple health conditions including cancer, fibromyalgia, Dysautonomia, and asthma have taught her that God’s joy is available even in our worse struggles. She blogs about creativity, faith, and living with chronic illness at http://cassiecreley.com.

 

 

You would expect a diagnosis to bring some certainty to your life. But when the diagnosis you receive is for a chronic illness that is currently incurable, that is not often the case. It took me some time to realize this. At first, I was blindsided by the amount of uncertainty that took up residence in my life due to my health.

 

Being diagnosed with a chronic illness puts us in a constant state of uncertainty. This uncertainty is one of the unexpected and most difficult side effects I’ve been dealing with since being diagnosed with fibromyalgia. Before getting diagnosed, as my health declined, there was always the assumption in the back of my mind that things would get better, I would get well, and life would continue as normal. But the diagnoses have just kept coming in the last two years: thyroid cancer, Dysautonomia, CFIDS, in addition to the asthma and allergies I was diagnosed with early on in life.

 

Unless you’ve experienced fibromyalgia, Dysautonomia, or other chronic illnesses, it’s hard to imagine the daily impact. I find myself wishing someone had warned me, which is just the same as wishing there was no such thing as uncertainty!

 

My body and my mind have become sources of uncertainty. I’m normally a very organized and dependable person. I could be counted on to show up when I said I would, to have a project done by deadline. Now, I often have to cancel last minute because there’s no telling when my body will suddenly decide it’s done for the day. I also used to thrive on having a schedule and routine. My symptoms and lack of energy throw my entire day into chaos, making it nearly impossible to predict when I’ll be able to accomplish even simple tasks.

 

Perhaps most frustrating of all is the uncertainty I now experience when it comes to my mind. I used to easily memorize information, but now struggle to find words or put them in the right order when speaking. When proofreading my writing, I’ll often find that I’ve inexplicably typed the wrong word. This is all part of the infamous brain fog of fibromyalgia. It makes me uncomfortable when talking with even close friends, let alone people I don’t know well, and impacts my confidence as a writer and my self esteem in general.

 

In spite of all this (and maybe partially because of it) I’m a huge believer in silver linings. What, you might ask, could possibly be a silver lining to so much uncertainty?

 

Maybe, if we can harness our uncertainty, we can let it force us to realize that uncertainty is a natural part of life.

 

The world teaches us that we should have every step of our lives planned out. And part of me really likes that. I want to know all the details. I want to be prepared. But is this healthy?

 

This expectation starts young. I didn’t realize just how profound an impact it has until I was a high school leader at my church for a few years. Students were expected to know where they wanted to go to college and what career path they would follow well before they graduated. I could see how much pressure and stress this put on the students. And the expectations continue throughout life—people expect you to know who you’ll marry, how many kids you’ll have, what you’ll do every 5 years of your life, when you’ll retire, etc., etc. If you don’t have everything planned, people seem to think there is something wrong with you.

 

Huh. Kind of makes you realized that certainty, or at least the illusion of certainty, can be exhausting too. Probably because pretending we’re in control of everything isn’t the way God designed us to live. In fact, the book of James has some pretty harsh words about acting like we know everything:

 

“Now listen, you who say, ‘Today or tomorrow we will go to this or that city, spend a year there, carry on business and make money.’ Why, you do not even know what will happen tomorrow. What is your life? You are a mist that appears for a little while and then vanishes. Instead, you ought to say, ‘If it is the Lord’s will, we will live and do this or that.’ As it is, you boast in your arrogant schemes. All such boasting is evil.” (James 4:13-16 NIV)

 

Pride creeps in (aka boasting) when we become focused on our will and our need to control every aspect of our lives. Instead, we’re called to recognize our dependence on God’s will and surrender our uncertainty to His sovereign will and trustworthy love.

 

Maybe our unique understanding of uncertainty, brought about by chronic illness, will allow us to extend grace to others because we won’t expect people to have everything figured out.

 

Maybe we can extend that same grace to ourselves. Wouldn’t that be a relief? To know we’re not expected to have everything together at all times?

 

I’m realizing that uncertainty is part of being human. If we take the time to recognize the normalcy of uncertainty, we can also recognize that our faith makes uncertainty okay.

 

We don’t have to be uncertain about God. We’re assured in the Bible of His unchanging nature. (Hebrews 13:8) We’re assured of his presence. (Matthew 28:20) We’re assured of his unchanging love: “Let the morning bring me word of your unfailing love, for I have put my trust in you. Show me the way I should go, for to you I entrust my life.” (Psalm 143:8 NIV)

 

The uncertainty of chronic illness starts to look smaller the more we focus on God’s certainty. I’m not saying it’s easy. But it’s possible. Some days will be harder than others. But the flip side of knowing some days will be harder is that we can rest assured that some days will be easier.

 

Once we stop running from uncertainty, we can embrace the fact that there is a positive side of not knowing everything. I’m reminded of a quote by Luci Swindoll, one of my favorites that I recently rediscovered: “Lord…may I relish the joy of knowing you are full of wonderful surprises.” Even in the midst of chronic illness or whatever life throws our way, let us never forget that God can certainly bring about beautiful things that are more than we ask or imagine.

 

Even in the midst of life’s uncertainty, let us never forget that God can certainly

bring about beautiful things!

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Pour Out Your Heart

It is never ending. The symptoms. The pain. The frustration, anxiety, and tears. The fatigue. The new diagnosis. Life dramatically changes when you learn you have a chronic illness. Things become devastating when you keep adding to that list.

It is bittersweet. One is thankful to know what is going on and that there is a logical explanation to the maddest within their body. Yet on the other hand, one may question, how can so many things be wrong with my body.

It becomes more challenging when no one offers a full treatment plan. A few medications may help, some, yet it is not nearly enough. The pain becomes so intense one questions if they are dying. More frustrating when someone cannot function and sees no way out. There is no independence. Living at your own risk.

Yes, positive thinking is an asset and it is fundamental. In contrast, shutting off all “negative” emotions will do no good. Sometimes we need to allow our selves to get frustrated, upset, admit it is too much, admit we are scared, anxious, or feeling hopeless in the moment.

For a very long time, I handled my chronic illnesses emotionally “too well” to some. I wasn’t scared or anxious or depressed. My doctor at the time felt I should be unstable and offered me anxiety or depression medications which I refused. I knew it was God’s grace which I would embrace until the season ended.

Now, three years later, I am more emotional and grieving my losses from chronic illness more. Not clinically depressed or anxious, just emotional more than I would like. It is a challenge for me, like many others, to allow myself to feel hopeless, anxious, or scared. I feel the need to be super woman. To handle everything perfectly according to an unrealistic worldly perspective. Feeling like I never measure up.

No where in the Bible does it say that a saved individual will handle every problem with no struggles or negative emotions and of course it doesn’t say we will handle it perfectly. Take a look at the Psalms to see how David shared his raw emotions with Christ. Christ meets us in the struggles. “For the Eternal will be a shelter for those who know misery,
 a refuge during troubling times. Those who know Your name will rely on You, for You, O Eternal One, have not abandoned those who search for You” Psalm 9:9-10. He holds us during the unbearable pain. He wants us to pour our hearts out to Him and to share the intense emotions. He encourages us to be transparent. He is okay with us saying that we feel it’s unfair, we are frustrated, angry, or scared.

Christ meets us where we are in the middle of the mess, the emotions, and pain. Psalms 34: 4- 5 says, “God met me more than halfway, he freed me from my anxious fears.  Look at him; give him your warmest smile. Never hide your feelings from him”(MSG). He holds us in His arms when life is too much to deal with. Endlessly He pours out grace in the tragedies. He wants us to trust Him in the difficulties. Gently, He will guide us and provide moment by moment.

Lord,

I lift Your name on high. Thank You for knowing me better than I know myself. For allowing me to be completely honest with You. You understand my sorrow, anxiety, and pain. You understand my thoughts and emotions better than I do. Help me to invite You into my pain and to pour my heart out to You without holding anything back. May I never hide anything from You. You are my refuge. I trust in You. Provide all I need. Help me to live life abundantly. Let each moment of my life bring honor, glory, and praise to Your name.

Amen

Good Friday

Good Friday is at the heart of Christianity, but we don’t talk about it nearly as much as we should. As a society we tend to be more excited for Christmas than for lent. We seem to look ahead to Easter Sunday, not taking the time to pause and be thankful. Jesus’s resurrection would have been impossible without the crucifixion.

It is important for us to reflect on the gift of the crucifixion asking God to open our eyes so that we may gain a deeper understanding. We cannot fully comprehend the pain Jesus endured for us or the love He has for us. He endured being whipped to the point the flesh was coming off of Him, carried an enormous cross for miles, nailed onto it, and than suffocated slowly. This horrific death brings wholeness and beauty into our lives. Because of Jesus’ sacrifice we have received much to be thankful for.

He has given us many gifts freely. Jesus lavishes grace, mercy, forgiveness, faithfulness, and love on His beloved children. Due to all He endured we have hope that sustains us in the hardest struggles of life, we are able to spend eternity with the Father.

Most of us are addicted to hurry. One task after another, reciting a to do list. Overwhelmed, sorrowful, and anxious because we were not created to operate this way. Regardless of what you are doing today I want to challenge You to take some simple steps as an act of thankfulness for all Christ has done for You and to grow closer to Him. Slowly read the crucifixion, no hurrying allowed. Take time to think about all Jesus endured. Than write out a few things from the crucifixion that you are thankful for. Lastly, write a prayer to draw closer to the Lord.

 

^” They spat on Him and whipped Him on the head with His scepter ofreeds, and when they had their fill, they pulled off the bold scarlet cloak, dressed Him in His own simple clothes, and led Him off to be crucified.

As they were walking, they found a man called Simon of Cyrene and forced him to carry the cross. Eventually they came to a place called Golgotha, which means “Place of the Skull.”  There they gave Him a drink—wine mixed with bitter herbs. He tasted it but refused to drink it.

 And so they had Him crucified. They divided the clothes off His back by drawing lots,and they sat on the ground and watched Him hang.  They placed a sign over His head: “This is Jesus, King of the Jews.”  And then they crucified two thieves next to Him, one at His right hand and one at His left hand.

Passersby shouted curses and blasphemies at Jesus. They wagged their heads at Him and hissed.

Passersby:  You’re going to destroy the temple and then rebuild it in three days? Why don’t You start with saving Yourself? Come down from the cross if You can, if You’re God’s Son.

Chief Priests, Scribes, and Elders (mocking Him): He saved others, but He can’t save Himself. If He’s really the King of Israel, then let Him climb down from the cross—then we’ll believe Him. He claimed communion with God—well, let God save Him, if He’s God’s beloved Son.

 Even the thieves hanging to His right and left poured insults upon Him.  And then, starting at noon, the entire land became dark. It was dark for three hours. In the middle of the dark afternoon, Jesus cried out in a loud voice.

Jesus: Eli, Eli, lama sabachthani—My God, My God, why have You forsaken Me?

Bystanders:  He’s calling on Elijah.

 One bystander grabbed a sponge, steeped it in vinegar, stuck it on a reed, and gave Jesus the vinegar to drink.

Others:  We’ll see—we’ll see if Elijah is going to come and rescue Him.

And then Jesus cried out once more, loudly, and then He breathed His last breath. At that instant, the temple curtain was torn in half, from top to bottom. The earth shook; rocks split in two.” Matthew 27:30-51 The Voice Translation. 

 

Lord Jesus,

You are king above all kings. Wonderful and sovereign. I want to take time today to worship You and to thank You from the depths of my soul. I tend to rush through life and do not spend enough time with You. I don’t cherish Your Word as I should. I am undeserving of love and forgiveness yet You have chosen to lavish both on me. Thank You for all You have done for me so that I may spend eternity with You. I praise You for the blessings in my life. Give me a deeper understanding of all You have done for me. Let me crave time with You more. Cultivate a heart of thanksgiving in me. Let me love as You love.

Amen

Introducing my invisible companion – pain

A sweet member of Chronically Hopeful, Angela, is sharing a beautiful post with us today. Thank you from the bottom of my heart for taking the time and spoons to be here with us today.

Bio from Angela,

I am a christian and lay-preacher. I worked in finance for 25 years but I am currently unemployed and looking for a new opportunity when my pain is managed effectively. I enjoy writing, public speaking, mentoring young people and spending time with family and friends.

 

When you meet someone for the first time, what do you think that they see or observe about you? Maybe the color of your eyes? Your radiant smile? Your height? Weight? Or whether or not you wear spectacles, walk with a cane or use a wheel chair? It is possible that a person may see and notice all of these outward features but for me, there is one thing that whilst all-encompassing to me, it is something that no one sees. I consider that it is significant but it is also invisible (at least to the untrained eye), and that is my pain!

Pain, caused initially by an injury and then by disease. Pain that wakes me up and often prevents me from sleeping. Pain that dictates my activities or lack of them. Pain that varies, but is my closest companion. I have never asked for its presence, but daily I am forced to contend with this intrusion, this reality, something that cannot be explained and that has a devastating effect on the quality of my life.

 

My “relationship” with pain, for want of a better word, began in the autumn of 1989 following a serious road traffic accident. For about six months I was unable to leave the house alone and needed help with every aspect of my life. Over the months that followed, my father and the physiotherapy team at my local hospital helped me to recover my strength thereby allowing me to return to work.

It was my dream to return to the relatively pain free life with the energy and freedom that many of my peers in their mid 20’s enjoyed. Sadly this was not to be and I had to find and accept a new and unwanted reality. Even though I was a Christian, this was still a challenge.

I was truly grateful for life, after all, how many people do you know that have been knocked over by a fire engine on call and have lived to share their testimony? I knew that I was blessed, but somehow at the back of my mind, there were some nagging questions: Why did this happen to me? Did I do something wrong? Suppose I had taken another route home or left work on time would things have been different?

 

As I battled with questions that I could not answer, I had further complications as I encountered a modern-day equivalent of Job’s comforters. People came to pray, give thanks, and to comfort me but sadly a few came to discover what “secret sins” I had committed that had led to this terrible accident.

Over the next few years as I grappled with the effects of widespread chronic pain, I found myself dealing with people who demonstrated a lack of understanding about chronic conditions and whether or not my pain was real or imagined. I asked God for healing, friends and family came for special prayer sessions, but when healing did not come, my faith was questioned.

 

What do you do when the promises of God don’t seem to apply to you or when you look around and hear stories of miraculous healings? When people question your desire to be healed, to be whole, to once again contribute to your church, your community, your family or even take care of yourself?

 

I didn’t have the answers or the strength to cope with them alongside the fatigue, nerve pain and all the challenges that both fibromyalgia and complex regional pain syndrome, brought to my life.

 

Moving forward however, I try to encourage myself and others by what God shows me through His Word. No matter how hard it is, I still have HOPE! Why? Well after nearly 20 years in chronic pain, I had another life-changing accident, one that left me unable to work and crippled by excruciating pain. Yet in all of this time I have been able to eat, have a roof over my head and I have my basic needs met. Has it been easy? Absolutely not! I lost some things that were important to me but I held on to that all-important, life-saving ingredient, Hope! Here’s how the Apostle Paul describes it in Romans 5: 3-5 ESV:

^“3 Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, ⁴ and endurance produces character, and character produces hope, ⁵ and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us.”

Hope as described here keeps us from being disappointed. Life is difficult for those who are suffering, but believing that a better day is coming, gives us hope. The Apostle Paul also has a disability, we are not told exactly what it is, but we know that he prayed three times for it to be removed.  When God chose not to, Paul accepted that God’s strength would be revealed in Paul’s weakness:

^{2 Corinthians 9: 7-10 Message}

^7-10 “Because of the extravagance of those revelations, and so I wouldn’t get a big head, I was given the gift of a handicap to keep me in constant touch with my limitations. Satan’s angel did his best to get me down; what he in fact did was push me to my knees. No danger then of walking around high and mighty! At first I didn’t think of it as a gift, and begged God to remove it. Three times I did that, and then he told me, my grace is enough; it’s all you need.
My strength comes into its own in your weakness. Once I heard that, I was glad to let it happen. I quit focusing on the handicap and began appreciating the gift. It was a case of Christ’s strength moving in on my weakness. Now I take limitations in stride, and with good cheer, these limitations that cut me down to size—abuse, accidents, opposition, bad breaks. I just let Christ take over! And so the weaker I get, the stronger I become.”

 

When I feel weak I go to God to receive strength from Him so that I am able to continue with the life that God has given me. I have lived with chronic pain for 28 years now and some days I am unhappy about the pain that I feel, that no one appears to understand and that no one sees. When my invisible companion tries to control my life, I try to reflect on better days and lift my heart to God who gives me hope.

Does God Care About New Years Resolutions?

New years can be challenging, even more so with chronic illness. Of course, there are many things ideally we would love to do, countless goals to set, but health is unpredictable. There are years that consist of back-to-back flares where the biggest accomplishment is living to see another year. Is it even worth setting goals with a chronic illness? Does God care about New Year Resolutions?

I do believe it is worth setting attainable goals each week and each day. Furthermore, I think God doesn’t care about a fancy out of reach New Year Resolution, but He wants Your number one focus to be Him. God deeply desires for you to grow closer to Him this new year, to worship Him more, and to love Him more. Additionally, He wants you to invite Him into each moment of your messy everyday life. He doesn’t want a few minutes only during your time with Him.

How do you invite Him into each moment? Focusing on Him during the day can be challenging but vital. We must be intentional. Thankfulness opens the door to live life, just as Jesus has called you too. It shifts our perspective to see God’s glory in every little thing.”No matter what the headlines shout, the world only has two stories: bless God or curse God.No matter what the world tries to sell, we all only get to choose from two shelves: Give God thanks or Give God the door. No matter what we’re facing, there are always only two roads: thanksgiving to God or dismissing of God.” Ann Voskamp

Moreover, a five-second prayer shifts your focus. A simple, help me Lord or give me grace in this moment is sufficient. Lastly, reciting Scripture you know by heart helps you to invite God into each moment. Our goal should be to continuously bring honor and glory to God’s name.

Choosing a word and corresponding verse of the year is currently trending. My word is thankfulness. I have chosen two Bible verses, And I come, eager to offer a sacrifice of gratitude and call on the name of the Eternal. Psalm 116:17. Come face-to-face with God and give thanks; with loud and joyful voices, praise Him in songs. Psalm 95:2.

Additionally, for the first time, I am setting goals for the year to grow in my relationship with Christ. A few examples include books of the Bible I want to read, finding two Bible verses to pray each month, memorizing a verse, and writing out a Bible verse every week.

Lord Jesus,

We praise You for Your tender mercy which allows us to have this New Year. Thank You for the countless gifts You have given us. Enable us to focus on You in everyday moments. Let us invite You into the messy moments of our lives. Allow us to grow closer to You in 2018. Let us love you more. We desire to bring honor and glory to Your name each and every day. Let us cherish Your Word like never before. Allow us to desire to spend more time with You. Help us to find new ways to grow in You. Amen

 

A Prayer for a Life of Thanksgiving

“How good it is to give thanks to the Eternal and to praise Your name with song, O Most High;  To speak of Your unfailing love in the morning and rehearse Your faithfulness as night begins to fall.” Psalm 91:1-2

Lord,

I adore You, how I love You. Cherishing who you are I offer worship from the depths of my soul to You. I treasure Your living  Word. Your beauty surpasses all words. Magnificent creator. Author of Salvation, through Your sacrifice beyond human comprehension You have brought me by Your blood, calling me Your beloved child. In You I  have everlasting life. You constantly poured out countless gifts beyond what I deserve, furthermore, far beyond what I deserve. All honor, glory, power, and praise belong to You now and forever more. Blessed be Your glorious name.

The to-do list dictates my time. My emotions wildly running dictate my reactions. My pain dictates my thoughts. I hurry- thought scattered- overwhelmed-depleted. Senselessly rushing another day without ever savoring a moment. Neglecting the gifts you have bestowed on me; I take so much for granted. I do not understand the depths of each gift and many I cannot see. Lord Jesus, have mercy. Forgive my ungrateful heart and lavish on me Your stunning grace.

Thank you from the depths of my soul for providing for me. I praise You for my relationship with You, Your Word, and Your character. Thank You for creatively and compassionately knitting me together and for the purpose You formed me for.  I praise You for this season of life. Thank you for investing in me, loving me, and forgiving me. I praise You for the blessings I neglect to see, those I am unable to understand, and the ones I have acknowledged, though not enough.

Enable me to slow down… to pause and reflect on Your goodness. Help me to recognize and say thank you for a few gifts. Fill me with thanksgiving every moment of every day. Let me live by Jesus’ example offering a gift of thanksgiving to You in the midst of unspeakable pain. Allow my thanksgiving to bring glory to Your holy name.

Amen

A Life of Thanksgiving

Elegant snowflakes dance through the air as November makes a grand entrance. Many people begin to think about the holiday season approaching. The stores are full of ideas and holiday movies are plentiful. Thankfulness creeps into each mind. Even so, people do not give the gift of thankfulness enough thought.

A thankful heart is a joyful heart, furthermore, it opens the door for an abundant life. Thanksgiving is not merely a holiday but a way of daily life. Stopping in the middle of the day to give thanks enables people to slow down.

There are many individuals who give an example of a thankful heart in Scripture like Job, David, and Paul. The prime example being Jesus. I never stopped and took note that before so many miracles, Jesus gave thanks to God. Before the feeding of the five thousand Jesus gave thanks, before speaking to the crowds Jesus gave thanks, and before raising Lazarus from the dead Jesus gave thanks. Undoubtedly, we should follow this example.

Plesant emotions are not a prerequisite to giving thanks. In fact, it is vital to a soul to give thanks during the trails in life. Ann Voskamp shares how Jesus did this the night He was betrayed, “In the midst of what seems a mess, in the tripping up and stumbling down of all hopes” Jesus gives thanks.

Life is bathed with pain. This is why it is vital to learn to give thanks in the middle of each struggle. A few seasons of intense chronic physical pain has personally, changed my perspective in what I give thanks for. Furthermore, I know I cherish things that most young adults do not. There have been times the pain breaks the pain scale. It shoots, stabs, deeply aches, and burns moving me to tears with an occasional yelp. This type of pain is the type that one cannot ignore. In the middle of the intense pain, I can barely whisper thank you, Lord, for holding me now. Thank you, Lord, that You are faithful, You are stronger than any trial, thank you, for getting me though this second, and thank you, for who You are.

God is waiting to do awe-inspiring things in your life, precious friend as you pause to give thanks. Your thanks is an act of worship and it is an offering. Though this simple act, you will receive the joy of the Lord and life abundantly.

I want to share with you a simple Bible reading plan for the month of November inspired by thankfulness.

I have been reading A Thousand Gifts by Ann Voskamp. I am only about halfway through. Yet it has impacted my understanding and perspective of thanksgiving. If you are not familiar with this book, let me share a few things. Ann has a journal in which she records, beautifully one thousand reasons she is thankful. I am in awe of this discipline, even more so that she pauses in the middle of what she is doing to record something she is thankful for.

The description is as follows, “Drawing heartbreaking beauty out of the simplest of details, Ann Voskamp invites you into her grace–bathed life of farming, parenting, and writing–and deeper still into your own life. Here you will discover a way of seeing that opens your eyes to ordinary amazing grace, a way of living that is fully alive, and a way of becoming present to God that brings you deep and lasting joy.”

In addition, I would like to invite you to record at least ten things you are thankful for during the remainder of 2017. As you read the Scriptures and record your list of blessings take time to also reflect on the character of God.