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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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.IMG-20170818-WA0004

 

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, and endurance produces character, and character produces hope, 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.

This Is Chronic Illness

How the melody began of the symphony “the Spoonie Life” is unique to each of us. However, like a ton of bricks, the news crushed us emotionally, which no preparation could brace us for the sudden shift in song. Lumped into a group of over 125 million American’s who are in daily combat with their bodies due to chronic illness. After all, these are Invisible Illnesses.

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Adjusting to the new role. A list of things we can no longer do. Harsh comments as well as the stairs, seem to greet us everywhere. Friendships fade away. Symptoms and pain consume each day. Functioning seems nearly impossible. Daily medications. Frequent breaks. This is chronic illness.

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Well-meaning doctors increase anxiety levels. Medical testing is never ending.  No one seems to know what to do. At times our health is out of control and all we can do is ride the roller coaster and pray. Help seems just out of reach. This is chronic illness.

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Yet we cling to hope because our lives depend on it. Dreaming. We find that reason to keep fighting. This is chronic illness.

This week is Invisible Illness Awareness Week. A week to honor you and to give you a voice. To equip you to fight your battle a little better. Making the invisible visible. Making those around us more aware. Hopefully, others will understand the reality of chronic illness.

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My friend with an invisible illness, you are brave, diligent, and compassionate. You overcome  negativity.  You have battled your invisible illness gracefully. You are an inspiration. Don’t give up! You are beautiful. You have an amazing purpose and you are making a difference.

30 Things About My Invisible Illness You May Not Know

30 Things About My Invisible Illness You May Not Know

1.The illness I live with is: My main illness is Lupus. I have autoimmune and an additional half dozen.
2. I was diagnosed with it in the year: 2013
3. But I had symptoms since: Childhood.

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4. The biggest adjustment I’ve had to make is: Not being able to be in the sun not being able to be on my feet for to long.
5. Most people assume: That I’m healthy, faking, or lazy. That I don’t do anything productive on a regular day.
6. The hardest part about mornings are: Being dehydrated. Dizzy spells.
7. My favorite medical TV show is: Diagnosis Me
8. A gadget I couldn’t live without is: My heating pad.
9. The hardest part about nights are: Getting to sleep & saying asleep.
10. Each day I take __ pills & vitamins. (No rude comments, please) Currently about 15. I also do chemo, self-injections, once a week. Please no rude comments, but feel free to privately ask me about my treatment plan! =]

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11. Regarding alternative treatments I: I have tried a lot of different treatments. Currently in regards to alternative treatments I maintain a healthy diet, aroma therapy, and keep stress levels down. A lot of ‘natural’ treatments can be risky for my combination of illnesses.
12. If I had to choose between an invisible illness or visible I would choose: I don’t prefer one over the other. Most days I my illnesses are 110% invisible. I have worn braces or used walking devices and some people are just as judgmental. You’re too young to use that.
13. Regarding working and career: It is difficult that I cannot work right now. I am a full time college student and patient.

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14. People would be surprised to know: I am busy despite my illness. I try to be transparent about it in hopes that others can open up about their illness. In no way am I looking for sympathy I want to encourage, support, and educate others.
15. The hardest thing to accept about my new reality has been: I need to rest and slow down.
16. Something I never thought I could do with my illness that I did was: Achieve a 4.0 GPA.

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17. The commercials about my illness: Ha. They are great… now only if the TV would play them…
18. Something I really miss doing since I was diagnosed is: I miss being normal. Doing normal activities like going out with friends, mission work, and being outside especially in the sun.
19. It was really hard to have to give up: Doing mission work and being outdoors for extended periods of time (AKA on a sunny day more than 5-10 minutes)
20. A new hobby I have taken up since my diagnosis is: Running a Facebook page, a blog, coloring, and crocheting.
21. If I could have one day of feeling normal again I would: Something outdoors, maybe visit the ocean…One day mission trip? So many possibilities!
22. My illness has taught me: To cherish every moment.

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23. Want to know a secret? One thing people say that gets under my skin is: You don’t look sick.
24. But I love it when people: Listen. And are supportive.
25. My favorite motto, scripture, quote that gets me through tough times is: So many to choose from! I love, “The Lord will Fight for you, you need only to be still” Exodus 14:14

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26. When someone is diagnosed I’d like to tell them: To educate themselves. Allow yourself to grieve and to adjust to Lupus. Learning to pace yourself is key. You will inspire so many people!
27. Something that has surprised me about living with an illness is: How rude some people are, especially those in the medical field.
28. The nicest thing someone did for me when I wasn’t feeling well was: Spend time with me and being supportive. Don’t under estimate the power of a simple short conversation or a gentle hug.
29. I’m involved with Invisible Illness Weekbecause: I feel obligated to share my story and assist others with chronic illness in any way possible. My hope is that others will be encouraged, learn, and find support through my openness. I am bursting with excitement for invisible illness awareness week. I hope you will join me in learning about invisible illnesses, celebrating those who have overcome obstacles their illness has presented, and sharing inspiring stories. Together we can put a stop to the assumptions of invisible illness. We can make invisible illness visible. https://chronicallyhopeful2014.wordpress.com/2015/09/08/invisible-illness-awareness-week/

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 30. The fact that you read this list makes me feel: Excited.

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Stillness In the Invisible Fight

Chaos, one word to sum up the invisible fight. There are always phone calls to be made, medical testing, prescriptions to be filled, and doctors to see. And that is only the tip of the ice burg.The invisible fight is draining physically, emotionally, and spirituality. It demands all we’ve got and more. Sucking the spoons right out of our grasp. On top of the daunting tasks embed in chronic illness we attempt to be as normal as possible adding school, work, food shopping, and social events. It is a full time job.

There never seems to be a dull moment. We have become accustom to fighting, it is not a choice it is something we must do in order to survive. Accustom to the demands of this life. We fight against invisible illness, for tests to be run, with insurance companies, and to receive proper treatment. Our defenses are up. We attempt to be strong for those around us. Pretending we don’t need any support. We are weary yet dressed in a warriors optimistic attitude we continue to fight another round.

“The Lord will fight for you, you need only to be still.” Exodus 14:14

Finding stillness in the mists of the fight seems impossible. Putting our to do list aside and quiet our minds we can enter into the presence of the Lord.The Lord is a flawless example of a warrior. He has fought for his children restlessly providing a picture of his love that is beyond words, beyond human comprehension. We can confidently surrender our invisible fight into His sovereign hands. The Lord understands every aspect of our invisible fight. He will support us, substation us, provide for us, and fight for us. The only thing we need to do is be still and trust in Him.

How do you find stillness in the invisible fight?

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My Invisible Fight

If you know me, you know I am chronically ill. My illness does not define who I am but it is a part of me. I look at as a trait not necessarily positive or negative. Like having brow hair, an oval face, or having dimples. My invisible fight. Words that empower. Words that inspire. Words that sum up my life over the past few years.

Without a doubt I have become a fighter, in this invisible fight. Few people know the details of my fight. Chronic illness is much more than what is seen on the surface. The battle is within. Falling apart only behind closed doors.

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I had many encounters with terrible doctors. No one took me seriously (I still struggle with this today). Doctors downplayed any concerns. My mom was my advocate, my voice. Growing up I was dangerously shy. If someone were to look at me crossed I would shrink back into my shell. Hearing my middle name released a waterfall of tears. Speaking up, was terrifying for me. Gradually I began to find my voice and become my own advocate. I have educated myself on treatment options, my illnesses, and everything medical that is relevant. I have learned that I know my body and my illnesses better than any doctor. After all I am the one who lives with it every moment of every day.  I fought to find my voice. My mom and I fought to find good doctors.

My health began to spin out of control in high school. It became evident that something was really wrong. Little by little new symptoms would develop. A new rash, unbearable pain, sun sensitivity, collapsing, weight loss, hair loss, and that was only the beginning. Medical testing became the norm of my life. Blood work that included more than thirty tubes of blood, MRIs, x-rays, GI studies, CATSCANS, scopes, EKGs, EEGS, and other medical tests that I cannot recall the names to. In addition, I had five operations in high school. The operations ranged from removing my tonsils to removing cysts to explority surgery.I thought I had hit rock bottom my junior year of high school, after an encounter with a medication that caused seizures. Little did I know rock bottom was much further down. Little did I know that I would long to go back to those high school years and deal with that pain and those symptoms.

I felt like the pause button has been hit one too many times. I have been home bound many times over the past six or so years. Every time play was hit and I began to recover, get stronger, and move forward pause would be hit yet again. It seems like each time my life is put on pause gets longer and finding the play button becomes more difficult. 

My invisible fight was taken to a new level in college first due to pluricy. Then to finding bloody urine that indicated a sever double kidney infection lasting four months. I was taken off my Lupus medication which gave Lupus permission to recklessly attack. I began seeing doctors every few days, had medical testing weekly, and became a regular at urgent care. I landed myself in the cardic unit last September. I continued to get worse. More testing. More doctors. More pain. Hopeless.

My symptoms shifted. My abdomen began to give me issues again. This time it was worse. Abdominal swelling to the point of looking at least six months pregnant was my newest symptom.  I began to question how much more my body could take. How many more days of intense pain that sent me to bed screaming and doubling over. I was taped. Giving in to the fight was tempting. No one had answers. No one knew what to do.

Things were terrible. Eating was difficult and staying hydrated was nearly impossible. The fatigue was thick yet my body wouldn’t surrender to sleep. I had to rest going up or down the stairs. Breathing was a chore. Shower a hazard. Daily tasks seemed like huge projects. Some days I couldn’t bend down to put on my own socks.

Finally it happened. This past April, I hit rock bottom. I could barely move. The pain and fatigue were more intense than I can describe. I was admitted to the hospital for ten days. https://chronicallyhopeful2014.wordpress.com/2015/05/02/hospitalization/

Looking back I believe that being admitted was the best thing for my health overall. I was at rock bottom. It was more difficult to keep moving forward than I can describe.

When I received the message on Chronically Hopeful inviting me to help and participate in Invisible Illness Awareness week I was shocked and over joyed. I firmly believe that sharing our invisible fight stories is vital. Someone had shared the fight song. I immediately connected with it and shortly after fell in love with the lyrics. I feel like that is where I am in my invisible fight, taking back my life. Taking back life after dramatic pauses is difficult. At times it is painfully slow. Progress seems invisible.  Taking back my life and continuing to fight is a daily decision and struggle. I am mastering a new balance act with my invisible fight and the rest of my life.

My invisible fight has probably been the most difficult fight of my life. I know it will continue to be a tough fight. It has caused me physical pain, heartbreak, taken me on an emotional roller coaster, played tug a war with my faith, caused me to lose friends, and lose much more. Yes, there are countless negative attributions of my invisible fight, but I am sincerely and deeply grateful to be in this fight. First of all I am grateful because I believe that God will use my invisible fight for his glory. Through my invisible fight I have matured as a person and as a Christian. I have learned so much. I have meet some of the most inspiring people. I have had the honor of running Chronically Hopeful and helping with the Invisible Illness Awareness Campaign. My prayer is that my invisible fight will be a testomy, inspiration, and blessing to others.