Arranging the Pieces of My Life...with Lupus

Living a full life is hard work. Living a full life with a chronic illness is harder work. At any moment, I can have a flare and my body (and mind) can shut down. For the past couple of years, I've worked two to three jobs at a time...while sharing a car with my husband in a town where public transportation is not practical. And lupus adds a special sprinkling downpour of complicated to my life. I love what I do. My body doesn't. When I make a commitment, I don't know what kind of obstacles or surprises I will have. And I always have them. Last fall, I had surgery. In the spring, I got very sick (being surrounded by high schoolers does not bode well when you're taking immunosuppresives during flu season). So how do I stay on top of my life when so many people are depending on me but my body is so unpredictable?

I am a time organizing queen. That's right. I'm a queen. Or maybe not. I forget.

I organize like crazy. I view every item on my to-do list, every responsibility, and every appointment as a puzzle piece. My life has a lot of pieces. Too many pieces. And the pieces don't arrange themselves. They must be arranged deliberately. So how can you arrange the pieces of your life? Here's how to start:

Before the week begins, decide and write down what you want to accomplish by the end of the week. This means you have to know what your priorities are and what's most important to you. If you aren't sure, there are a lot of wonderful resources out there. Maybe I can blog about it. But that's not on my list of priorities this week, so I'll save it for another time. (See what I did there?)

Next, using your planner/calendar, decide when the best times to accomplish those tasks are. If you're doing this on paper, use pencil because you may have to rearrange later. Feel free to rearrange as the week progresses. Some days and weeks are harder than others, so give yourself a lot of grace. If you have to rearrange again and again because your body is struggling or life got complicated, that's ok. You'll probably still accomplish more than if you didn't plan at all. Something is better far better than nothing!

When possible, try to group "puzzle pieces" according to categories for productivity. If you have multiple tasks that require you to drive to a certain part of town, plan to do those things in one day so that you're not making multiple trips. If you have multiple tasks that require use of your computer, try to accomplish as many of those tasks as possible in one sitting. When you have limited time and energy, the key is to figure out a way to work as efficiently as possible. 

Don't evenly distribute tasks throughout the week. Put a heavier load in the beginning of the week so that you have more room to work with later when unexpected things come up throughout the week. Procrastination is one of my worst enemies. If something is truly important to me, procrastination can steal it from me. So I don't usually push things back unless I have a really good reason like I'm in the hospital or my arms won't move. It happens. It happened.

Leave time later on for make up work. If that time ends up being open, you can get extra rest (Yay!) or get ahead on work for the next week.

Don't budget time minute-by-minute. 
Budget time according to segments in the day.
     Examples:
     morning, afternoon, evening
     before classes, after classes, after work
This is for tasks (such as doing the dishes or working on a project), not appointments or events (which have a set start time or schedule). I used to organize my time minute-by-minute, but it was impossible to maintain, the rigidity made me feel pressured, and I ended each day feeling inadequate. On the other hand, when I think in terms of segments in the day, it's easier for me to wrap my head around all that needs to be done and I can be more flexible for whatever life may throw at me.

Budget time for rest. You will be more productive, efficient, and creative when you are well-rested. I know my body well enough to know that when I fill up an entire week with activity, I will be unable to work the next. So I actually write "Rest" in my calendar. Each week, I make sure I have at least one chunk of time dedicated to rest. And if someone asks me to do something during that time, I say, "I'm sorry. This is the only time this week I can rest. And if I don't, I won't be able to work next week. Is there another time or day that will work?" You don't even have to tell people that you're resting. You can simply say, "I already have something scheduled at that time."

May all your puzzle pieces fit a little better and may your life be a little fuller!

A Simple, Quiet Space: Epilogue

Ever since my amazing journey at the monastery (you can read about it here, here, and here), life looks very much like it did before. I still teach and practice piano. While school is out, I'm working on projects and slowly organizing the house we moved into last year. I still spend more time than I like each week organizing all the pills I take for lupus (up to 16 a day). I still lug around a ginormous bag filled with too many books everywhere I go and watch TV with my husband in the evenings.

Same old, same old. But not quite. My days are nuanced in ways they weren't before. And one small change in particular went a long way.

The day I returned from the monastery, I traded my iPhone for an alarm clock. Well, not entirely. I still have an iPhone. But instead of using my phone as my wake-up alarm, I use a tiny alarm clock to wake myself up in the mornings. It cost $5 and is so small it doesn't even have a radio. And where is my phone? Charging in the living room. It's not allowed in my bedroom at night. This one small change led to thousands more. My phone (e-mail, text messages, FaceBook, Twitter, Pinterest, Instagram...) is no longer the first thing I see when I wake up and the last thing I see before I sleep. On my night stand, I have a Bible, The Book of Common Prayer, and a devotional. In the mornings, when I feel lupus the strongest and my body is too stiff to get up, these are the things I grab first. Though my first thoughts range from "Where's my iPhone?" to "I need to brush my teeth," and to "My body hurts and I have too much to do today,"...my first action is to surrender all of these things to God and pursue what matters most. Each morning, my mind races in a million different directions. And each morning, I will my mind to turn to God.

It hasn't been easy. I am breaking habits that are deeply imbedded into my being and starting new habits that the enemy of my soul doesn't want me to have. At first, everything else on my mind felt so urgent and loud (almost yelling). The high-pitched beep beep beep of the alarm clock made me and my husband grumpy. It felt awkward turning to God when my mind was so hazy and I hadn't brushed my teeth yet. But I chose to stubbornly pursue what matters most. Each morning, all the "other stuff" in my mind yells a little softer than it did the day before. My husband and I are getting used to the morning beeps. And I've come to accept that God loves me so much that He will take me just as I am--morning breath and all.

I don't feel like I'm moving mountains in my new morning routine. (Maybe I am and I just don't know it yet.) I haven't had any moments that were full of intense emotion and prophetic words from God. But I'm less frantic now. My day is filled with a calm I didn't have before. Things that would have caused me anxiety don't have that power over me anymore. I loved my work before, but now I enjoy it even more and have a stronger sense of purpose when I do it. My husband and I argue less and talk more about meaningful things. (And now that I just typed this, we're probably going to have an argument about something ridiculous tonight. Just kidding. I hope I'm just kidding.) I feel safer letting God search the little crevices of my heart and fill me with dreams so big they scare me. And instead of feeling shame because I'm not where I thought I would be by this time in my life, I see the significance of what I'm accomplishing now and feel like I'm on the verge of something wonderful.

So this is my life. One small, five-dollar change. I have all summer to make it stick before I go back to working three jobs in the fall. And who knows what kind of stories are waiting for me ahead...

A Simple, Quiet Space: Day Three

[This is the conclusion to my last couple of posts. What follows are journal excerpts from my third day on a spiritual retreat at a monastery. You can learn more and read my journal excerpts from the first two days here and here.] 

Today's Agenda:
   1. Pray and reflect.
   2. Book of Common Prayer devotions before breakfast and lunch.
   3. Read the Bible (Isaiah 43).
   4. Look over Anything.
   5. Spend time outside.

8:21 am.
I feel the world pulling me again to rush. When I woke up this morning, the first thing I did was to shower and prepare for the day, I did not turn to God first. That was a mistake. But I turn to Him now and I still have several hours before we leave this place.

9:17 am.
Like manna, no matter how much I pour myself in God's presence and God pours in me, the next day I must do it all again.

9:46 am.
Yesterday, I feared that I would forget. I will. I will forget again and again. I will keep forgetting because that is what we do on this side of Heaven. There is no shame in that. One day I will stop forgetting because the sight of His face won't let me forget. Until then, I need to keep returning to the simple, quiet places so I can remember again.

11:07 am.
I am thankful for this place. A sacred place full of quiet and full of lessons. A place where it is easy to find the presence of God. A place that gently forces you to experience God's goodness. A place that makes you better because it makes God bigger. A place that makes you homesick for Heaven.

12:30 pm.
During lunch we met a man who just arrived here this morning. He asked us questions about what we do here, how this place works, whether we ever talked to the monks. His wife passed away last fall and he came here for whatever this place can offer him. His journey here is just beginning. My heart is so broken for him. God, please work miracles in his life while he is here. Let him find healing, comfort, peace, direction. Touch the places in his heart that are hurting, that are searching for answers. Let him leave this place full of strength and joy. Do for him what only You can do. Thank You for bringing him here. And thank You for making him part of my journey here. Amen.

12:45 pm.
Lord, I am ready for the world now. Please go with me. Amen.

A Simple, Quiet Space: Day Two

[This is a continuation from my last post. What follows are journal excerpts from my second day on a spiritual retreat at a monastery. You can learn more and read my journal excerpts from day one here.]

Today's Agenda:
   1. Ask God dangerous questions.
   2. Book of Common Prayer Daily Devotions (breakfast, lunch, dinner, end of day).
   3. Read the Bible.
   4. Read Anything.

7:26 am.
Simplify. This word has been stuck in my head for many weeks (months?). This morning, I felt led to do it. I simplified my agenda - both from what I expected of myself to accomplish here before I came and from what I scribbled in a tiny notepad last night. But I won't get as much done...on paper. Maybe God will be able to accomplish much more in me. This practical call to simplify goes beyond my time here. This morning, even before breakfast, I wrote another note in my tiny notebook. I will give God the 2 days after I return home in which I will read nothing except His Word. I will not completely return yet because God will not be finished speaking to me when I leave this place. I am walking into the mystery. I am becoming the person God made me to be.

8:08 am.
The drive for productivity is not equivalent to obedience to God moment by moment. With lupus, there are so many times when my body doesn't allow me to get things done (I feel unproductive), so when I am feeling well (or at least better than not well) I try to compensate by being extremely productive. I daily judge myself based on my productivity. How productive am I being today? This is not the path God wants for me (us) to take. I should daily judge myself based on my obedience to God. Have I taken the time to hear God's voice and have I completely walked in obedience to Him? It isn't that God doesn't want me to be productive. He does. But His call is for obedience. And when I am completely obedient to Him, then I am the most productive for His Kingdom.

8:58 am.
There is a freedom in solitude and simplicity. Here, I can be free from the chains of want, of noise, of wastefulness, of comparison, of busy-ness. I can focus on God untethered here. How can I take this freedom with me when I reenter society?

9:10 am.
...and complaining. This place is free of complaining. I am content here. Content and thankful.

9:49 am.
Anything...

...God, is there anything You want me to give up or anything You want me to start doing?...

...God, I will do anything. I will...[This is one of those places where the words are between me and God and NOT me, God, and the internet]
...I will stop giving You snippets of my day and start spending extravagant time with You.

10:51 am.
I am realizing that in this place, God isn't trying to tell me to "do something." He is completely changing me. When I return home, I won't just be someone with a task from God. I will be a different person.

11:16 am.
Anything...Live for God's glory:
   - Blog for God's glory.
   - Pray for my husband for God's glory.
   - Play piano for God's glory.
   - Teach for God's glory.
   - Clean for God's glory?
   - Love people (and show them love) for God's glory.

[This prayer and commitment to do anything got very real. Very painful. Very difficult. A lot of tears. A lot of words that will stay in my journal.]

1:16 pm.
I choose to live for things I cannot see yet.
I don't want to miss anything God has for me.

2:15 pm.
Dangerous question: God, where do You want to take my plenty and pour it out? I will do anything.

6:20 pm.
In this simple quiet place, I can hear from God and experience rest...I am not perfect here, but I am closer to God. I want to bring this with me. To have moments--no matter where I am--when I can enter this simple, quiet place where I can encounter the glory of God. A different reality. A more real reality.

7:40 pm.
The sun is starting to set, the bell for the compline just rang, and I am feeling sad that this is my last night here. My heart is not ready to go back. I don't want to lose what I have here. I'm scared I will go back and forget. God, please don't let me forget! Please don't let me go back. Please make this change stick. Please work a miracle! Please don't let me go back to my old ways. Please make me different. Completely different from the inside out. Full of Your glory. Full of Your power. Full of You. Take my fear. Take my mess. Take my inadequacies. Take all of me and turn me into something new. Something beautiful. Something that radiates your glory.
          selah.
                       Amen.

8:08 pm.
Oh, the transformation--the journey--from yesterday to today! I came empty. Now I am full to overflowing. I came wanting to quit everything. ("I quit" became my motto the last few months.) Now I feel like I'm about to embark on an adventure into the unknown. I came feeling spent. Now I feel ready to give again. This is the reward for spending extravagant time with God. When you give extravagantly to God (however meager that is), He will give extravagantly to you (How limitless that is!).

A Simple, Quiet Space: Day One

I was physically and mentally exhausted from an over-packed life that just kept going and going...So we went to a monastery. That's right. A monastery. With monks. I love going there. It's a quiet place. You don't have to take a vow of silence when you are a guest there. People often talk a bit during the meals and in the public areas. But there is a freedom from the constant noise that is impossible to escape in daily life. My husband and I each stay in our own room with a bed, chest of drawers, reading chair, and writing desk - everything you need for a spiritual retreat and nothing more. (There is a bathroom too...It's not that bare!) Bells ring throughout the monastery to signify the monks' prayer times and services (the first rings at about 3:30 a.m.) and there is a schedule for meals (prepared by the monks), but you have the freedom to follow your own schedule. I went with an agenda:  Seek God and listen to His voice. It was a simple agenda, but not an easy one. In that quiet room, there was no hiding from God, no piece of my heart that was left unchallenged. It was a journey--the kind that once you go on it, there's no going back to the way things were.

 I had a few supplies to help me:
   - a study Bible
   - a very thick journal and a lot of pens
   - a book: Anything, by Jennie Allen
   - another book: something by Kierkegaard (which didn't get read at the monastery at all)
   - The Book of Common Prayer (I am not Anglican, but sometimes I like to use this book as a tool to help me pray when I can't find the words on my own.)

What follows (in this and the next couple blog posts) are excerpts from my journal. (I filled over 15 pages in less than 3 days.) This is not a researched, theological treatise or a display of spiritual strength. These words are raw and many were written through tears and deep emotions. I left out the parts that I feel are just between me and God, but I wanted to give you an opportunity to be a part of my journey, to learn some of the lessons I learned, and ask some of the questions I asked.

DAY ONE
We just arrived here. I quickly ate lunch and felt awkward in the silence. It will take a while for my soul to slow down and find rest in the quiet...

Today's Agenda:
   - Pray the Daily Devotions from the Book of Common Prayer.
   - Read the Bible.
   - Read Anything.
   - Quiet my mind so I can hear from God.

1:05 pm.
I have no words to pray. This is embarrassing to me. I am so mentally worn out that no words come. Yet I know that God hears what I cannot say and knows what I am too numb to feel.

1:31 pm.
God, I will do anything...

3:49 pm.
...I want to let go of everything that is keeping me from God and completely live for Him. I want to know Him intimately. Not like my "glory days" back in high school or college. I want to know Him now--as a 32-year-old and everything that entails. I want a life that is marked by His presence. I want God.

4:32 pm.
Doing many things does not compensate for pursuing your One Thing.

8:04 pm.
Today, I am making a decision to surrender everything to God and committing to do ANYTHING for Him. Anything. I have absolutely no idea what "anything" is. No idea what lays ahead. God hasn't told me yet. I'm choosing to be obedient. Completely obedient with no hesitation.

8:25 pm.
What is the "anything" God wants me to do for Him? I am stepping into the unknown. I am starting to feel comfortable in the silence. Time to start asking God some dangerous questions...

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This is the first in a series. You can read more here, here, and here.

Wrapping Up Lupus Awareness Month

To everyone who
 
changed their profile pics to help spread the word,
read our blogs, status updates, tweets,
liked and shared our posts and pics,
wore purple and told the world why,
said words of prayer for us and words of encouragement to us,

On behalf of those who have lupus and are affected by it,

THANK YOU.

As things are wrapping up this month,
I have a few more requests:

Don't forget.
Don't stop spreading the word.
Don't stop praying and giving and loving.
Don't stop believing that your small acts are impacting the world.

Purple Shmurple

Purple is not my favorite color. In fact, I despise purple so much that I would pick pink--which I often claim is my least favorite color--over purple any day. I don't really have a good reason for my strong dislike of the color purple. I think I was just born this way.

...Then I got lupus. Purple is the color for lupus awareness. When I'm having a lupus flare, I have a bracelet that I wear to encourage me throughout the day. It's purple (of course), has a butterfly charm (butterflies are a lupus symbol because of a butterfly-shaped rash many lupus patients have on their face), and says the word "BRAVE" to remind me to be brave even in times when I feel weak or afraid. When I wear it, my husband knows that I'm having an extra hard day, that I will need some extra encouragement, and I will probably struggle to accomplish simple tasks. (If you come over my house when I'm wearing my lupus bracelet, expect to walk into a mess.)

For Lupus Awareness Month, my life is covered in purple: purple wardrobe, purple jewelry, purple profile pics, purple pens...A lot of purple. I believe so much about lupus awareness (see why here) that I am actually excited to don my least favorite color for the cause.

On Friday, May 16, 2014, the Lupus Foundation of America is doing a Put On Purple campaign. It's easy to participate. Here's what you do:

1. Put on purple.
2. Tell people why.

To help spread the word even farther, take a pic and post it on Facebook, Twitter, Instagram and whatever other social media you like. This will give you a chance to take a selfie for a great cause! (How often do we get to say that our selfies change the world?)

This Friday, I'll be wearing purple for lupus awareness, for myself, and for all the people who are impacted by lupus. Who's with me?