chroniclife

Is the Cost of Living Worth the Pain?

November 7, 2019 by admin

Do you think the cost of living isn't worth the pain of chronic illness? Spoonies like us can struggle with exhaustion and wonder how to live a life with limited abilities and energy. There's a way to schedule in fun and make room for living. Click through and let’s figure it out together! #chronic #illness #chronicillness #grief #loss #chronicmigraines #spoonie #spoonies #grieving #chronicpain #chronic #organizing #depression #mentalhealth #mentalillness #spoonielife #scheduling #plannerbabe

What is the Cost of Living?

I need to ask, Is the cost of living worth the pain? I know this question is a little frightening. We don’t want to talk about it, do we? Those who are risk-averse may understand what I’m about to share here. Many of us have past experience that tells us that life is costly, and those of us dealing with grief or any sort of health issues know that we are going to pay physically for every choice we make. And if we end up paying physically, there may be a financial cost as well.

It may seem better, easier to hide from the pain by not committing to things. I have done this and I have missed out on so much.

If you are bold, confident, and never struggle with indecision, you may be wondering what is wrong with everyone else. I know not everyone has the same issues, but you may be friends with or even be married to someone who does. Are you wondering, why are they so anxious? What is their deal? Just make a decision and move forward!

Honestly? Impulsively plunging into something that is necessary or even sounds fun can become terrifying. Many of us are convinced we have to weigh the options. We may do this for days, going back and forth. And then, when we’ve finally made the choice, we end up second-guessing. We fear we were selfish using our energy the way we chose. Did we do enough for others with what we had? Why can’t we just do all the things?

A Painful Lesson in Organization

I’ve shared before that this past year has been difficult for our family. Right now, we are approaching the one-year anniversary of losing my sister, for whom I was a caregiver, in freak accident. My health, which was hampered by debilitating migraines before her death, has deteriorated as I tried to avoid the pain of grief. But in the past few months I’ve been meeting with a grief counselor, journaling, and confronting the depression and anxiety that gives me worse migraines and leads me to want to quit living.

As I have started to finally mourn, what I have discovered I hope will help others. One of the most incredible things in our lives is something I openly confess to you I am HORRIBLE AT. Organizing. I am a scattered, creative-type who finds people who know where to put things fascinating. Who are these demi-gods? But even in the midst of grieving, I have had big goals and great dreams, and I knew I needed to make room to try to reach them. That meant goal-setting, scheduling, etc. But anyone working through illness or grief or even just struggling with limited resources knows that the best-laid plans often get side-lined.

But what if we also make room for recovery, what if we make room for the movement of life–both inhaling and exhaling? What if we organize a silly week of fun, counting in the cost of living with limited abilities?

Taking what I know

Even though I knew it was going to cost me, I did two things recently. They were both career-oriented and still fun. They also left me drained and in serious pain for at least a week afterward.

Knowing my children would be home for fall break an entire week and that I would likely struggle to accomplish normal work, I decided to combine the idea of stay-cation with celebrating our favorite book series. As part of my job as an author, I am continually posting on social media about great books and sharing in newsletters with my readers about fun things to do with those books.

The Cost of Book Week

Each day of our Book Week I got up and fought my normal migraines. We did silly things like raking the yard as our own silly (and oddly competitive) version of quidditch to celebrate Harry Potter. We ate blue food all day to celebrate our love of Percy Jackson. One day we chased each other in an odd game of hide-and-seek cyborgs versus Lunars to celebrate The Lunar Chronicles. On my favorite day, we went for hike in a nature preserve to celebrate Rapunzel’s Journey series and had freshly baked bread for supper.

But there was one day I couldn’t even get dressed I was in so much pain. I wore my sunglasses most of the day and felt bummed I couldn’t go on the front lawn to play pirate-sword-fighting to celebrate The Ascendance Trilogy. My kids understood and were even prepared for this possibility. We ended up sword fighting inside during one small surge of energy.

And the week after? I was toast. In “American” that means I had nothing left. To recover, I had to take giant breaks from social media, writing, and business goals. Thinking back on the week, though, I’m glad that I paid the cost for living and making memories with the kids. It’s a bright spot in comparison to a difficult year.

Showing up

Similarly, I attended an online conference to help me grow as an author-entrepreneur. I completed 15 classes in three days and had a few meetings afterward to figure out how to best implement what I had learned. And, you guessed it, I was in horrific pain afterwards. It confirmed again that working from home is the only job I can manage right now, and if I don’t take breaks like I should, or if I push myself daily without having a rest day somewhere in between, the migraines get much worse.

So, why take the risk? Why push myself at all knowing the cost? Because I want to live my life and I feel that as long as I don’t do it always, I’m telling my illness “You’re not the boss of me!”

The Cost of Living is Worth the Pain

I’ve made choices like this since and I will keep doing so, but I am learning to cushion those choices with some grace. My hope is found in the gospels as it speaks over and over again of how Christ looked on the crowd with “compassion.” He saw them for who they were, sheep without a shepherd, and He knew what they were struggling with. In those passages, He makes room for them, feeding them, teaching them, sometimes even healing them. (see Mark 6:30-56).

I think that even now He sees me and He sees you with what we struggle against and what we struggle for. I love this quote:

What’s next for you?

So there are things ahead of us that we are called to. I know it will cost me, and it may cost you. We can also know if we choose the right things, the things that are worthwhile and matter we can pay for them with confidence. And maybe a little second-guessing. But mostly confidence.

About JacQueline

As the author of The Journey series, a young adult fantasy retelling Rapunzel’s misadventures, JacQueline also wrote Memoirs of a Headcase: Held by the God of Hope, to share hope in the battle against chronic pain and depression. Currently she lives in North Alabama with her karate husband and three book-crazy kids. All opinions expressed on this website come from her own experience. Do not substitute it for professional therapy or medical advice. Any affiliate links used on this website will provide additional income to JacQueline’s family at no additional cost to you.

If you are a reader wanting to connect with JacQueline, you can get a free book here. Each month you will receive book recommendations and other booknerd fun.

Are you a writer or an author looking for help? JacQueline has been writing all her life and loves meeting others who think writing is living. As an author coach, helping other writers on their journey gives her joy. Schedule your free coaching call to learn what steps you should take next now.

photography: Chris Lawton, Timothy Eberly, and Eric Tompkins.

Graphic Design for Social Media: JacQueline Vaughn Roe. Contact her for help with graphic design or other author services.

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How to Survive the Summer with Kids and Chronic Illness

August 9, 2019 by admin

There seemed to be a bit of a panic in America as the school year ended. Did you feel it, too? Maybe it was just me, but I felt a sense of wide-eyed fear that soon I would have my three home ALL DAY LONG. I wasn’t ready. I write for a living and my work-in-progress was lacking some serious progress. Is there a book on how to survive the summer with kids and chronic illness?

As I have struggled to balance life with chronic illness, I have wondered how to keep everything under control. How do I take care of my family, myself, and contribute financially? As grief over the violent death of my sister has set in, this has become an even greater concern.

How to Survive the Summer with Kids and Chronic Illness - authorjroe.com - When parenting ideas for the summertime clash with chronic illnesses, the question of how to live with chronic pain and grief often comes up. My parenting isn’t perfect, but I have found that God has something for each of us in difficult seasons. #friends #friendships #motherhood #momlife #chronicillness #spoonie #spoonies #spoonielife #summertime #parenting #inspirationalquote #devotional #Biblestudy #joy #hope #quotes #bestquotes #Biblequotes #grief #depression

How can anyone do it all? There’s a fundamental flaw in this question. Can you see it? No one can or should try to do it all. And the more we try to control things, especially when we have chronic or grief issues, things are going to go wrong. The first couple of weeks of summer found me sweating with the effort of not screaming everyone into silence. (Not recommended when you have daily migraines.)

Pain and Fear had Begun Controlling Me

There was something vital missing. Can you tell what it was? I was missing perspective–lacking wisdom. The first step was to recognize that cowering in my house in pain and fear wasn’t controlling these emotions–the pain and fear had begun controlling me.

My best friends from college and I used to get our families together every summer, but the last few summers we haven’t been able to. When the invitation came for us to travel to help for a week at their church, my family decided we would make whatever sacrifices were necessary to make it happen.

How to survive: Moving Forward

If I were to write a book on how to survive, I would say, “Go spend time with wise friends.” Armed with painkillers, sunglasses, and earplugs, we descended on their unsuspecting home for a week of fun and chaos. We crammed five adults and eight children into one house and one camper. In the mornings I took painkillers and headed to the chapel of their church. While others were bouncing in and out of loud activities, I was literally pacing in circles and praying.

Years ago, I had been the song leader and the drama teacher. I had kids shouting and jumping. But this summer I just couldn’t. I could still hear more noise than I have recently been able to tolerate, and I tried to use the week to desensitize myself. And you know what? I loved the time alone with God. We talked about what the kids were learning about Him that week and a great many other things. I’ve never made myself be quiet and pray for three hours at a time and the exercise was calming.

In the afternoons, I retreated with my friends to the back porch, letting the kids take over and sprawl around the house. Like my time with God, I found comfort and wisdom. I found healing. I discovered that I needed to relax, and I remembered that I needed to enjoy this hectic season. Sure, I wouldn’t be as productive business-wise during these few short months, but I could learn to live in the moment, use this time to reaffirm my love for each member of my family and knock out work in the afternoons or evenings.

How to Survive: Capturing and Exchanging Anxious Thoughts

That week gave me hope. I began listening to music again, which is healing even if somewhat painful. Returning home, my family and I tried to find creative ways to have fun together. But the grief was still heavy, the pain ever-present.

My thoughts were becoming too dark and I was returning to such a deep depression that there seemed no point to living. I know this to be a lie from the enemy, the one who longs to destroy those who love Christ. Still, the lie was making its nest in my thoughts and I needed to evict it. I found a local counselor and began the difficult process of sorting through this minefield of grief that has wreaked havoc with my already-tenuous health.

My counselor has already reminded me of the necessity of capturing and exchanging anxious thoughts in order to heal. Sounds amazing to us who struggle, right? But to do it, we have to look what we fear in the face. We must call it by name. I don’t want to. I guess I’ve been hiding in my house instead of facing the anger and pain of my sister’s horrific death.

How to survive: In This Together

If I say that I trust God is going to “work all things together for the good” even I cannot in my finite mind fathom HOW (see Romans 8:28) then I have to believe there is something here not just for me, but for you, too. Yes, you. You may not know me well, or you may know me very well, but you are reading this intensely personal blog because you are either a) struggling like me and searching for joy or b) just love me lots and lots. Whichever is the case, we are in this together. And I think we need that. Just like I needed to see my friends in Texas and work at something greater, I need us to connect and become stronger as we get through this.

Guess what my assignment is? She told me I have to go outside each day and face the sunshine. I know it will be painful, but yesterday (when my pain level was around a 5), but I was able to do it. My son, who is still young enough to want to, reached for my hand and walked me around our neighborhood to their various bus stops while we waited for my girls to get home.

I have other assignments including journaling and trying to return to my karate classes, too. Yes, that last one has a lot to do with getting me back in the company of good friends. Something as simple that and yesterday’s walk is like telling the grief, the depression, the migraines, ALL OF IT, “You’re not the boss of me!” Today I hurt a bit more, but I’m going to do my best to fight anxiety and get out of the house, go be with people I love and enjoy them. Allow myself to see and be seen again.

For Those of Us Hurting

For those of us hurting and wondering how to survive, we must allow good people, wise people to come beside us and offer their help. Bit by bit, we will become ourselves again. We won’t ever be exactly the same. The hurt has altered us forever and given us a different view. But, we can adjust and live a different life, capture these negative thoughts and discover what God has for us in this new and different landscape. We aren’t alone. This may sound simple, but I know it to be extremely hard.

So, friend, you’ve read all the way to the end. Why? Are you just concerned for me or do you relate to some of what I’ve been going through? I truly believe we are stronger together. We need one another to make it through this life, especially if we are in a season of struggle. Is there anything I can pray for you? I like to pray as I walk and since I have many walks in my future, it would be my privilege to lift you up. Let me know in the comments or on whatever social media platform or messaging system you feel comfortable using.

JacQueline is the author of Memoirs of a Headcase: Held by the God of Hope as well as The Journey series, a young adult fantasy retelling Rapunzel’s misadventures. She uses her writing to share stories of hope and joy. JacQueline currently lives in North Alabama with her karate husband and three book-crazy kids. All of her writing is from her own experience and based on her opinion. It should never be substituted for a professional therapist.

How to Survive Graphic Designs by JacQueline

Photo Credit: Jason Blackeye, Paola Chaaya, Jared Erondu, and Levi Guzman

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Planning for Joy

April 3, 2019 by admin

I want to get to the good part of this story, the part where I share with you how everything got better. But even as I sit here in pain, I know the struggle isn’t over. We should know this by now, shouldn’t we? As long as we are alive, it’s going be a battle. For some of us, it’s a difficult job that perhaps doesn’t pay enough or maybe the loss of a loved one. For others, it’s our marriage or perhaps our singleness that is hard to live with. There are the less dramatic issues of the lack of motivation and dealing with squabbling children. Still, others like me wrestle with bodies that don’t work right. What do we do with these issues? How do we move forward in order to embrace a life full of joy in the midst of heartbreak, grief, and pain?

Inspire and Educate

Yesterday morning I stood onstage ready to share with a few hundred squirming students. I was there to inspire and educate, but they were the ones inspiring me. As they sat on their cafeteria stools staring up at me, I remembered myself at their age. I would look at the guest author who had come to speak to us and I imagined what I would do when I finally grew up. I would be a writer, an author, someone who created worlds with her words. Oh, the places I would transport my readers! Oh, the adventures they would take with my characters! The young me imagined the shape that my life would take and it was breathtaking.

But the young me never imagined a life of debilitating chronic migraines. I bet your younger you didn’t, perhaps couldn’t imagine the difficulties you would face one day. As I stared into the little faces full of expectant hope, I wanted to share some of the hard truth I’d learned, but I wanted to do it in a way that encouraged them to keep dreaming and keep striving.

Story Seeds

I held up my fingers and asked the students to imitate me. “This is a story seed,” I began, and I told them how important a seed was. It contained all the excitement of a new life inside it, but it was going to take work to bring that life into being. We talked about the obstacles and barriers. We talked about unexpected surprises. It was time to introduce them to Rapunzel and we discussed her fairytale.

I selected three students to play Rapunzel, the witch, and the man who befriends Rapunzel. (You would have loved the little girl I selected from the audience to be the witch. She had a wicked laugh!). The witch had a little too much fun “throwing” the man out the window, cutting off Rapunzel’s hair and casting her out into the unknown to travel “Beyond the Tower.” The kids loved that part!

Since I had their attention, I shared some of my musings, my story seeds. Did Rapunzel know how to make more friends? How would she find a way to earn her bread after being locked away her whole life? What would she do if the witch didn’t leave her alone and kept tormenting her? I shared with them that Rapunzel almost gave up in that first book and that she, like all of us, had to figure out the answer to one of the most powerful questions in the entire universe.

Why? Why am I doing this?

This is a question I have to answer before I go to bed at night or when the pain hits me in the morning, I won’t be able to find the strength in me to beat back the depression and scramble out of bed. But my husband needs me up and moving. My children need me loving them and making breakfast. And you know what? My reason “why” to get out of bed and fight against chronic pain is really the only thing that keeps me going.

I have struggled with “Why am I doing this?” in almost every aspect of my life, including writing Rapunzel’s story. My true “why” is because I have a relationship with the God who loves me. I want to joyfully live the life He has blessed me with, even though that life is painful. Right now, that means trudging through chronic pain and dealing with grief over the loss of my beloved sister. When everything else falls away and that’s all I have left, I pray He will help me find that His grace is sufficient. It’s not just a feeling, His joy truly is strength. (I’m still trying to understand Nehemiah 8:10.)

We must quiet ourselves

I found it to be true today. You see, I was supposed to look in those upturned faces a little over a month ago and share with them how to find their whys and not give up on their dreams when working for them seemed too hard. But on the day I was supposed to share with the students, I barely got out of bed. I tried everything I knew to do to get some relief so I could drive. But I still had to cancel. The teacher who had booked me to come in kindly said we could reschedule, but I felt afraid. I felt the guilt of having let down the teachers and students. I was scared to plan and fail again.

It feels like all of life is a risk, doesn’t it? No matter where we turn, we have decisions we have to make, and it is easy to become paralyzed by doubt and self-recrimination. I think this is when we must quiet ourselves, become aware of the negative thoughts buzzing in our minds. We need to take captive thoughts that are lies, the ones trying to keep us from worshipping God with our whole selves.

Giving back by never giving up

You know what I did? I got out my calendar. It felt like a huge risk, a great act of faith, but I rescheduled. That little act was weighty. I realize now I was planning for joy, making space for God to show up and make things possible. Dear friends were asked to pray. I made certain that I had the right medicine available. The day before was spent practicing and preparing to go make lots of new friends so I could share with them that we must never give up, never give in.

And, though I awoke in pain, the medicine helped this time. My family helped get me ready. I was able to drive. And I had so much fun! At last after months of being mostly house-bound, a shut-in, I was giving back by sharing a little of what I am learning so we will “never, never, never give in.” (Winston Churchill)

You are not alone

Have you noticed that I usually end my posts this way? Think through your life. What you are currently wrestling with? I may not know, but I believe I know the One who made you, who sees you, who longs to help you by being your “why”. He wants to be the reason you get out of bed in the morning and keep trying. He wants to be your everything. I have discovered that even as I am thrashing around in this life, reeling from the loss of my sister and in more pain than I can put a number to, He gives my life meaning and purpose. He fills me with joy–but it’s not a feeling. Peace comes as an assurance that harmony is being worked to restructure the cacophony.

I will say it every chance I get, every chance you will let me, dear one. He is not through with you, He is not through with me. He promises that once He has begun a good work in you, He will be faithful to complete it. (see Philippians 1:6) We can trust Him because He has proven Himself trustworthy.

The truth is this life is tiring no matter what you are dealing with, but we don’t have to deal with it alone. God has surrounded us with people who will help us along the way if we will only reach out. No matter where you are on this journey, please reach out. Let me or someone you trust know how we can pray for you. Feel free to follow me as I keep #searchingforjoy on Instagram and Facebook, as I keep reaching for excellence in writing on Twitter and my other Instagram account. You are not alone, we can do this together.

If you would like more information about Rapunzel’s misadventures, you can purchase her books on Amazon or Kobo. I’m excited to announce that the sequel, Amidst the Castles, will be published at the end of April. Contact me if you would like an advanced copy. If you would like to know more of my story of hope, you can purchase it on Amazon.

A special “thank you” to Sheryl Chan for April’s chance to “link-up” with other chronic illness warriors. It is an honor to be part of this community.

Photo credit: Giulia Bertelli, Greg Rakozy, and Alexander Possingham.

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Struggling in the Search for Joy

March 8, 2019 by admin

Do you feel like you are always failing?

This is where we often find ourselves at this time of year. We had great aspirations, wonderful intentions. But by the end of winter, hope has dimmed and the daily challenge of doing all the things supercedes any grand vision we may have had back when the year was new.

Just after the New Year, I had committed to myself and to you to begin searching for joy. I was going to look and unearth the beauty of everyday life in the midst of chronic pain, mounting depression, and the grief of having lost my sister. I heard from so many of you, especially in February, that you wanted to connect and come search with me. It had to be the right thing to do. If I opened my eyes like I had in the past, I would be able to share insights with others and be an encouragement.

But my determination flagged in the darkness of illness and sorrow. I flailed, I floundered. My mind kept recalling Bible passages on joy . . . Wasn’t I supposed to consider facing trials “pure joy”? (see James 1:2) I felt a sense of loss and as though I was failing you. I saw that others were struggling as well. The search was hard. I felt like giving up. Have you felt this way, too?

Pause if you must, but decide to find a new way

In the past, I would have dismissed my pain, my sorrow and made myself try harder. Instead, I let go. I took a deep breath. I realized with the help of some friends that in the dark night of hardship joy, like the sunrise, can be a long time coming.

I have a couple of friends a bit further in their grief journey than I am. We have each experienced different losses, but their wisdom and prayers have been a lifeline to me. In essence, they shared that healing is not a destination, it is a journey. And knowing that my journey includes the battle against chronic debilitating migraines, I must take care. This is not something I can conquer or a task I should force myself to do. It is a decision to discover that the story of our lives includes pain and loss. As I paused in my search, I discussed my frustration and my fear of failure. What one friend said to me was beautiful. She asked me to consider if perhaps joy was the outcome of going through a trial, not always what one experienced in the midst of the trial.

I thought about this for a long while. In America, we have a phrase, we “chew” on a thought. For days, I kept returning to this thought. What if joy is a seed we plant during painful seasons to be harvested later?

What if success looks strange?

Deciding to look at joy as something that I can’t perceive yet is changing everything. It looks different than I imagined. It is the hard work of waking and getting up in the morning knowing there will be pain in my head and an empty seat at the table. It also means seeing past the loss to what I do have.

And what I have is an odd sense of humor about life in general.

I have often remarked that people who have been through hard things are a bit peculiar, slightly “off.” This has brought a great deal of laughter back into our home. We remember aloud the funny things my sister used to say to us. Before you think us heartless, my sister had a brain injury that caused her to be literal and made her already sharp wit a bit sharper. My children and I have also been laughing at how migraines and depression have caused us to live “dark” lives. We look for ways to make each other laugh and that does bring joy.

Thriving instead of merely surviving

Many of us had great intentions at the beginning of the year, but the first quarter is nearly gone. We needn’t panic, though, because our best ideas often need tweaking. What if we take the rest of this month and reassess what we have been learning? What if we collaborate with one another and recognize what our struggles could be growing in us? Perhaps if we do so, we can leave behind survival mode.

I will continue sharing #searchingforjoy across social media. Please join the search as we work together to plant these seeds.

Photo Credit: Volkan Omez, Imani Clovis, and Paz Arando on Unsplash

Graphic Design: JacQueline Vaughn Roe

Special thank you to Sheryl Chan for the chance to link-up with others suffering from chronic illness.

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