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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Encouragement

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It is difficult when your illness dictates your life. When you are taped with no way out. Unable to live. Merely surviving one moment at a time. Hope seems light years away. Everything seems to crumble right before your eyes. Everyone has days when they break. It is okay to have break downs as long as you don’t give up. You have everything you need to overcome these struggles.

You are NOT alone. Others feel this way as well. It won’t be like this forever. Eventually you will be able to live life to the fullest again. We must hold on to this hope, for it gives us the strength to keep fighting. Keep your faith. Stay strong. Hold onto hope.  You have so much strength and courage. You accomplish amazing things on daily. Be proud of all you have overcome.

It’s a season for beauty and blessings. Your strong will provide strength and hope to countless people. There will be positive things that occur because of this difficult season in your life. God’s got this. Rest in his loving arms. Blessing are just around the corner. Be open too receive all the Lord has to offer. Gentle hugs spoonie warriors. Sending prayers and spoons.

Welcome December

I adore the Christmas season, it is absolutely magical. Beauty overflows all around from stunning lights to warm smiles to traditions and so much more. Christmas carols sweetly fill the air. The Christmas season brings joy as it reassures us gently that things will be okay. It helps us connect with our inner child reminding us of the wonderful Christmas memories. At the same time, it encourages us to move forward filling us with a hope like no other. It unites us with those we hold dear in our hearts. I cherish every aspect of Christmas.

Unfortunately chronic illness and the stressful demands that go with it does not take a holiday. The doctors appointments, treatment, and testing still must be done. Chronic illness tends to complicate things and get in the way of our joy during this season. It is easy to lose focus of the beauty in this season when we are consumed with emotion and pain. When the world seems to be caving in on us and everything seems to be falling apart. Chronic illness isolates us. We feel the effects more so this time of year. Finding a balance between doing things and resting becomes more difficult. For some, this season is depressing, reminding them of all they cannot do.

I hope you are able to take the time to rest and reflect this holiday season. Take to reflect about all the ways you have grown as an individual, all you have accomplished, all the blessings in your life, and everything you have overcome the past few months. You, my friend, have come so far. I am proud of you. You deserve to take time for yourself this busy season. You are an inspiration. Your story is breathtaking and laced with beauty along with encouragement it will change lives. I pray your strength is renewed. The Lord will bless you greatly this season, be open to all he has to offer for you.

I pray you would have a flare free Christmas season. I hope that despite your pain you are able to enjoy this season of blessing. Cherish every moment with those you hold dear to your heart. Hold onto the Christmas spirit. I pray that this season would bless you with little to no pain, plenty of spoons, memories, joy, and love. “It’s beginning to look a lot like Christmas.”

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Good Night Encouragement

Today was far from perfect, never the less it was a blessing. You did your best which is all anyone can expect. Every day you are faced with many obstacles, which you gracefully overcome with determination. You might feel like you are dragging your body through the day like you are going to collapse from all the pain. Yet every day you accomplish so much.  You are doing an amazing job! You might not be where you want to be and that is okay, you will get there in time. You are doing a fantastic job where you are in life right now. Don’t be too hard on yourself. Be grateful and proud of the small accomplishments.

Be compassionate to yourself tonight. Take a few moments to reflect on all your amazing accomplishments and blessings. Do something nice to recover from this long day, take some me time. You need to be nice to yourself it not only benefits you but also those around you.

You are an inspiration and a blessing to many people my friend. Your friendship is priceless and very precious. Everyone you encounter is blessed by you. Bless by your smile or your kind words. The strength you display is yet another blessing to others. Inspiring them to be strong in the trials they face. You bless many people daily.

I pray that the Lord would be with you this evening as you unwind and prepare for bed. I pray that you would fall asleep quickly, stay asleep through the night, dream sweetly, and wake up with a lot of spoons.

Shake it Off

Living with a chronic illness is a challenge beyond words when encountering people who don’t understand. We have all had an experience of rudeness beyond belief. There are stairs when taking medication in public. Rude remarks when using a walking device. 

 I cannot tell you how many times people have been disrespectful or stared at me because I use a wheelchair in a store. The majority of the time people either stand in front of me, unwilling to move or practically run away. People act like I have the plague. I have heard over the few years I have used a wheelchair in a store that I am too young to use one or too pretty. The stairs and remarks make me feel like I owe people an explanation. However, I do not need to explain my life to everyone I encounter. If the right doors are open to education someone I don’t mind but there shouldn’t be a social pressure to explain it all. 

 Many people doubt the intensity of our pain and they question if we are indeed really sick. No one seems to understand battling against your body and taking care of yourself is a full-time job. Simple tasks are draining. Some people go out of their way to upset us or to be rude. They offer unnecessary options on how to break free of the chronic illness chains.

 

Too often Spoonies lose friends due to their illness. Some people want absolutely nothing to do with us while others act strangely towards us. 

Too often people judge us before they get to know us. People treat us at times like we are nothing or are stupid. 

Too often we hear phrases like: 

But you don’t look sick

You need to be more positive

Have you tried…

You’re too young to be sick

It must be nice not having to go to work/school

You’re just having a bad day

You need to get more exercise

It’s all in your head

Maybe if you got out more

These things get under a spoonies skin, to say the least. When people mistreat you, SHAKE IT OFF. It is not your fault. Don’t let them get to you. You are an amazing person. Even though you are ill, you are so valuable. You have so much to offer this world. Shake off the stares, Shake off the negative and nasty remarks, Shake off the heartbreak…. Shake it off.. It’s gonna be alright

Hold your head up high, cause it’s gonna be alright. You have so much courage. You are an inspiration for thriving despite every setback. Sending lots of spoons, prayers, and hugs. ❤

Psalms Bible Study

    This summer I am leading a super laid-back women’s online Bible study. We are reading one Psalm a week during the summer. We would be honored if you dropped by now and then or read through this life changing book with us. This post will focus on a brief introduction to the book of Psalm. Additionally, there will be a little on chapter one.

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Introduction to The Book of Psalm

A place of comfort. A refuge of strength with a ray of hope. Words alive to be cherished and written on the heart. The book of Psalm. Regardless of how one feels or where there are in their live story or how mature they are as a Christan, there is a relatable Psalm. Truly a Psalm for everyone.

The history of Psalm is richly complex over the course of more than 800 years. The outline of what occurred historically around various Palms is interesting rhythm to check it out here. I want to point out a few of these events behind this book of the Bible. For example, David & Goliath, During the Babylonish captivity, On the rebuilding of the temple, and During the war with Absalom.

Furthermore, God used numerous individuals. A few authors include David, Moses, Asaph, Solomon, and others. In addition, there are orphan Psalms which we do not know who wrote them.

The book of Psalm is broken down into five books. The order is as follows: Book 1 (Psalms 1–41), Book 2 (42–72), Book 3 (73–89), Book 4 (90–106), and Book 5 (107–150). Needless to say, this is the longest book of the Bible.

How is a Psalm defined? It is a poem, song, act of worship, prayer, and praise. The Psalm embodies experience, expression, and emotion. Read more in depth about this outline here. The Psalms tend to fall into these genres hymn, lament, thanksgiving, confidence, Remembrance, wisdom, and kingship.

A book could be written on the purpose of this book of the Bible, in opening Matthew Henry shares the following:

To assist the exercises of natural religion, and to kindle in the souls of men those devout affections which we owe to God as our Creator, owner, ruler, and benefactor. The book of Job helps to prove our first principles of the divine perfections and providence; but this helps to improve them in prayers and praises, and professions of desire towards him, dependence on him, and an entire devotedness and resignation to him. Other parts of scripture show that God is infinitely above man, and his sovereign Lord; but this shows us that he may, notwithstanding, be conversed with by us sinful worms of the earth; and there are ways in which, if it be not our own fault, we may keep up communion with him in all the various conditions of human life.

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Now, let’s take a look at Psalm chapter one (The Voice Translation), which was written by King David:

God’s blessings follow you and await you at every turn:
when you don’t follow the advice of those who delight in wicked schemes,
When you avoid sin’s highway,
when judgment and sarcasm beckon you, but you refuse.
 For you, the Eternal’s Word is your happiness.
It is your focus—from dusk to dawn.
You are like a tree,
planted by flowing, cool streams of water that never run dry.
Your fruit ripens in its time;
your leaves never fade or curl in the summer sun.
No matter what you do, you prosper.

 For those who focus on sin, the story is different.
They are like the fallen husk of wheat, tossed by an open wind, left deserted and alone.
In the end, the wicked will fall in judgment;
the guilty will be separated from the innocent.
 Their road suddenly will end in death,
yet the journey of the righteous has been charted by the Eternal.

At times, it seems like a tragedy with a side of heartbreak is around each bend. With what seemly endless negativity acknowledging the blessings around each turn can seem impossible. The negativity makes our view blurry. Take a few minutes to acknowledge the blessings in your life. Consider the blessings that you don’t generally “count”.

While studying the Bible or being connected with God in prayer avoiding sin can sound like a piece of cake. Yet once back into the world it is evident that this is not easy. Falling into sin can be second nature. We can only avoid sins highway and walk in the way of the righteous is only possible through the strength of Jesus.

My prayer is that each person reading this will become more rooted in Christ in this season of life. That you would drink so deeply and often of the Father’s Word that you would not run dry. Soaking up His goodness. I am confident that all you do within God’s will, will prosper beyond your wildest dreams. Your journey righteous sister has been charted compassionately by the Eternal.

Main points of this Psalm

  • The blessedness of the righteous man (1-3)
  • The desperation of the wicked (4-5)
  • A final contrast between their two ways (6)

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Lord,

All honor, glory, and praise belong to Your holy name. In Your name mountains are moved and seas parted. You are on the move in Mighty ways. Nature reflects Your beauty. The earth sings Your praises. You are beyond my understanding.

I am surrounded by your blessings no matter where I turn day or night. Freely You have lavished Your love on me. I praise Your name for who You are.

I am undeserving of all Your goodness. Give me the strength to battle my flesh and avoid sins highway. Let me resist sin in the powerful name of Jesus.

Your Word provides me with strength, guidance, and joy. Allow me to remain focused from dawn to dusk on Your precious Word. May I write on my heart. May my thoughts be consumed with You. Holy Spirit move within me. Let me be firmly planted in You. Let me prosper in Your name. Allow me to serve You and bring glory to Your name.

Amen

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I want to invite you, sweet friend to continue to dig into Psalm chapter one with me. I pray that you will sincerely cherish these living and active words. I am confident that the Lord will work within you during your time in the books of Psalm. I am excited to give you free print out a which will hopefully provide guidance as you study the Word of God. Please download, print, and share.  

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Spoonful of Spoonie Encouragment

Mornings for those with a chronic illness are a struggle beyond words. Waking up and willing our bodies to function is a fight. Here is a spoonful of encouragement for spoonie warriors. Happy Monday, brave friend!

You have victoriously made it out of bed this morning. The symptoms and pain are already overwhelming, but you’ve got this. You only need to take today one minute at a time. You have all the strength you need, even though it might not seem that way. Anxiety and depression attempt to dictate your day. Take a breath. Take a break.  Get some rest. Keep fighting to make today the best day possible.

You have been chosen to walk this path. It is one filled with heartbreak, disappointment, and setbacks. Walking the path of someone who is chronically ill is a challenge to say the very least. Being sick has most likely disrupted your flawless rhythm with life. It has stopped you dead in your tracks. Your illness has tried to toss your dreams out the window.

Though this path is difficult, I assure you there is a lot of beauty to be discovered. Sure life is not what it used to be, but the song you sing is just as beautiful. There is hope, joy, love, laughter, and life to be found on this path. You will be able to recreate your wonderful dreams. You are still you, despite your illness. You are an amazing and beautiful person with a flawless story and a huge purpose.

    There will be days that you become overwhelmed and feel completely alone. Your feelings are understandable, however, I promise you, you do not walk alone on this path. There are people who care about you, people who understand how difficult the journey is, and people who want to support you.

I am proud of all you have accomplished. I know you will thrive today. This week will be lovely simply because it is the only choice. While you don’t need to be positive all the time you need to take baby steps forward. You are doing amazing. Raise your coffee (or tea) to a great week warrior!