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.

Wisdome from a Chronic Illness Warrior

I am excited to have a beautiful warrior from the Chronically Hopeful Facebook page guest blogging for us today! “Ellie is a 45 year old woman living in South Carolina.  She has battled Malignant Multiple Sclerosis with grace and courage. She works as a cashier, but is always dreaming of more, she’s just not sure of what more is. Her favorite hobbies are reading, writing and yarn crafts. Her biggest hope in blogging is to help no one ever feel alone in their journeys with chronic illness, or anything else.” Please check out her blog here.

 

She never wants to meet me for lunch. It’s the only time my health will mostly fully allow me to socialize outside the home. My friends know this. She never answers my phone calls. That email has been sitting there unread for days. He won’t answer my texts, but he’s all over social media with all those silly memes. The phone shouldn’t ring off the hook every time I call for an oil change appointment only for me to come home to 3 messages on the answering machine asking why I haven’t scheduled my service appointment.

 

There’s no reason I can see for me to be number 68 of 123 on hold for a customer service rep when I call to try and straighten out yet another medical bill. Yet I am. It’s only more aggravation added to a life already made extra stressful by multiple serious and chronic illnesses. Can’t people act right if they’re going to be a blip on my radar? Don’t I deal with enough already just fighting to live?

 

There’s something I’m forgetting in the throes of all these medical appointments, treatments and pain-  the world won’t stop spinning because I’m always in pain. It won’t even slow down a little. I have to jump up on the ride while it’s spinning, full turbo blast speed ahead. Sometimes there’s a kind passenger already onboard willing to help out, but not usually. I must adjust and remember that people in my life are more than just blips on my radar, even the people just passing through and the strangers I encounter.

 

In a life full of illness and pain and the extra stress and hardships they cause, people are everything. My city is in the midst of a big cold snap with high temperatures in the 30s. I was sitting outside the library to cool off because my body doesn’t regulate temperature the same way as “normal” people. There was a shirtless man in shorts walking by on the sidewalk. He was singing loudly until a police officer pulled up beside him in his cruiser. I wondered if there was going to be some kind of huge scene because the lyrics the man was singing were not the nicest ones.

 

There was no scene. The police officer talked to him quietly and then reached back in his cruiser and put a coat on the man. They then got in the car together like they were friends. I hope they went to a shelter if the man needed it.

 

Many years ago I was grocery shopping with my mom and saw a woman crying in the store. We asked if she was ok. She said yes and we didn’t press the issue, but it didn’t look like she was ok. We carried on with our shopping and rounded a corner and there was the woman full on sobbing sitting on the floor in the produce section. The store manager was on his knees beside her praying. It seemed to help her.

 

Many years later, this event is still having a profound impact on my life. I didn’t know religion in any way at the time. I was dead set against it, actually, and quite vocal about my lack of faith. Time has changed that, and recently I went back to this store to see if that manager was still there. He was. He too remembered the crying woman. I told him what an impact it had on me. The conversation I had with this manager will stay with me forever, and well, is too private to share, but it, and the crying lady were a huge stepping stone on my path to a faithful life.

 

Please remember that as we go through life with disease and pain that everyone is going through something. Illness that doesn’t go away does not make our pain different than anyone else’s. It may mean there’s less of a break, but pain is in the eye of the beholder, everyone feels it differently. Just like beauty, and that is a beautiful thing.

 

 

 

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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Thanksgiving

Crips fall beauty lingers in the air as people hurry to prepare. Nature adorn in the finest hue crafting an elegant view. Thankfulness consumes each heart uniquely setting people apart.

An individual’s definition of thankfulness is transformed when chronic illness enters their life. Simple things possess deep pleasure. Such as a walk in the park or a phone call with a friend. The delicacy of life is illuminated. Cherishing moments with those they adore is vital. Laughter is treasured.

A person’s list of blessings is as exclusive as their heartbeat, which is especially true of someone with a chronic illness. Generalizing thankfulness in the chronic illness world is nearly impossible, so I will share a few blessings of my own.  I am grateful for my medical team. I have made progress from the time I entered this facility. This is the best hospital I have been at. I am deeply blessed for the chance to be on Remicade. Though I don’t like being on medication, I am grateful to have it and for the help it provides. I am thankful for the friends I have made. The support that I have. The lessons I have learned from chronic illness.  I am thankful beyond words for the chance to continue my education at Liberty University online. I feel spoiled with the resources available to me. Fiction books provide a way of coping with pain and I have been blessed recently by Karen Kingsbury’s books.

These are a few examples of blessing from my life as a chronic illness warrior. I hope Thanksgiving day is a day you can cherish. One that is consumed with love, laughter, joy, and spoons. I pray the pain levels are low and the symptoms are few. Happy Thanksgiving Warriors!

When A Warrior Passes

Honestly, I have wanted to write this post for a good two months, but it has been difficult to write.

You know once you have transported to the world of chronic illness that one day you will be devasted when someone passes away. However, you are never ready enough for that moment.

I had expected to eventually lose someone in a Facebook support group not someone I went to school with. Two weeks before she passed I ran into her mom while food shopping. I barely remember anyone from high school and it is embarrassing as well as frustrating for me. But when her mom said her name I could picture her sitting next to me in middle school. I had assumed she moved not that she was chronically ill with at least one of my illnesses. I promised her mom I would talk with her and we could hang out. Her mom said they were attempting to get her paired with a service dog. I was so excited at the possibility of having an in person chronically ill friend my age.

I didn’t hesitate finding her on Facebook.I tried to be patient waiting for her to response constantly reminding myself she was flaring. Within hours I found out I was too late and it broke my heart in a new devasting way. I immediately regretted not connecting with her sooner. I know she suffered way too long and things were horribly unfair. She should be going to college and building a life for herself.

Lossing someone who has one of your illnesses or who is chronically ill is extremely different. I have balled my eyes out many of times for a life of a fellow warrior that I barely knew. My heart goes out to the families in a unique way.  I might not have known them well or maybe not at all yet I live a small part of their story. I live the pain, doctors, symptoms… the life of a spoonie.

The grieving seems to be unique to those with chronic illness. There is an element of guilt for living because you know it could have been you. You wonder why it was that person, what if someone listened better, could it have been avoided, or will that be me one day. Frustration with the health care system at times.  Angry with the people who brush us off.

It has been a few months but from time to time she’ll come to my mind. I wish I remembered more about her other than her pretty hair and sweet voice, like an actual conversation. This death has been completely unique in the way it affected me.

Anytime someone passes with a chronic illness around your age it hits home and it is difficult. When you lose someone to chronic illness allow yourself time to grieve. If someone in the chronic illness community you know passes find a special way to say good bye and to pay your respects. When a girl passed with IBD a few weeks back, I found great comfort in leaving her family a message on an online guest book in honor of her.

Regardless of how close you were let yourself cry if you need to.  Give yourself permission to get angry, to feel hopeless, or broken. Emotions are healthy. They are indicators of things going wrong and of heartbreak. However, emotions are not your dictator so once you have allowed yourself to feel you need to slowly move forward. Allow yourself to heal slowly. Seek support from others who are chronically ill, family, and friends. Cherish each moment in life and live them to the fullest as best you can.

 

 

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. ❤