When Too Much Comes Knocking

Before this new year began, I made a drastic decision to do less to accomplish more. (You can read more about it here and here.) This has meant cutting back or even cutting out some things in my schedule. At times, this has felt like cutting off an appendage. But I feel really good with my decision. I have so much more energy now. I'm finally getting a chance to work on things that are most important to me. I'm happier.

I'm also realizing that I have an addiction to busyness. I have an amazing gift of being able to fill my schedule beyond maximum capacity. But that is exactly what I don't want to do, because then I'll end up right where I was before: exhausted, constantly sick, and feeling like a piece of me is dying because I never have time for what matters most to me. I'm not going back. I need to learn a lifestyle that allows for space. I am NOT going to rush to fill up my schedule again. 

...Or am I? This week, the requests, inquiries, and offers have been coming in. I'm not inviting them. I'm not seeking them. They're just coming. It's like some sick test. Will I stick to my word or will I give in? Thoughts of, "But this could be great," or "But the extra cash would be nice," or even, "But what if the opportunities stop coming?" keep coming to my mind. 

But I have to trust that I made the right decision. I have to trust that if I follow God with all my heart, then He is going to take care of me and not let me miss out on something that I'll later regret missing. And I have to trust that when the time comes, I'll be ready for something much greater. There comes a point in life when you have to do what is right for you. This is what I believe I have to do in this season of my life. It's not easy. But I believe that in the end, it will be worth it.

Prayers for Sleep

I am presently typing away in the wee hours of the morning. I have insomnia.

Last night, after dinner, I informed my husband that I had a headache and it was probably because I didn't have any coffee or tea that morning. I simply forgot. For me, caffeine headaches are no small thing. They often lead to migraines and a night of misery and uselessness. There is only one way to keep it from getting worse: drink a cup of coffee. So my husband lovingly made me a concoction of iced coffee with vanilla almond milk. It tasted wonderful. My headache is gone. And now I have insomnia. And my back hurts. Okay, the back pain is completely unrelated, but it is present nonetheless. And I have a feeling that even if I didn't have a cup of coffee swimming through my veins, the pain in my back would have been enough to keep me up.

Lupus leads to a vicious cycle: pain begets insomnia, which begets more pain, which begets more insomnia. This is not only true for those with lupus, but also for many who are battling chronic illness. At times, it can seem so cruel when sleep alludes those who feel they need it the most. It can be frustrating, discouraging, even lonely.

I have had many people tell me that they are praying for God to heal me. I appreciate those prayers and the love that motivates them. I hope those prayers continue. But can I be truly honest with you? Sometimes, Often times, I think I would prefer it if people would pray that I would have a good night's sleep. Of course, the two prayers are not mutually exclusive, but I am well aware that most people pray for the former and don't even consider the latter. I have learned that I can live a full life with lupus. It's not easy, but it is a full life. The thing is, we live one day at a time. And I have lost so many days because of the sleepless nights that preceded them.

So, for those of you who pray for your friends who need a healing touch from God, I would like to challenge you to not let your prayers end there. Pray for sleep. Pray for restful nights. And pray that when morning comes, they wake up feeling refreshed.

If you would like more ideas of how you can pray for someone with a chronic illness, you can find some here.

Explaining Lupus Fatigue

Sometimes when people ask me how I am, I answer,

"I'm tired,"

and they say,

"I know exactly how you feel."

Really? I appreciate the sentiment. And I show my appreciation with a sheepish grin. But unless they are living with a chronic illness, I highly doubt they know exactly how I feel. In fact, the fact that they would say that they know exactly how I feel causes me to doubt they have a remote understanding of what I'm going through. Before you start to think that this is an angry rant, let me be clear: I know they mean well. I know their words are just a sign that they don't understand. They probably will never understand. And to be perfectly honest, I hope for them that they never will. So I will continue to appreciate the sentiment and reply with a sheepish grin.

But there are times when a sheepish grin is not enough. Maybe you've been there. Times when people at work ask more of you than your body will allow. Times when friends want to hang out when your body is hurting and craving rest. Times when someone who loves you truly wants to understand so they can better know how to be there for you.

Maybe you don't have lupus, but you've been there in a different way. I have been blessed to have a husband who has been my greatest supporter. He has learned how to watch for my symptoms. He knows my limits. And he knows more than anybody what I mean when I say I'm tired. But I know that there are times when people ask him how I'm doing or wondering if we're available to hang out...and he has a loss of words.

The other day, I came across an article that beautifully articulates what I'm feeling when I say that I'm tired. It is honest without being angry or sad. So if you, like me, are grasping for ways to help the people in your life understand what you're going through, check out the words of Jenn Schoch in "The 5 Types of Lupus Fatigue." I think she explains it better than I ever could!

Facing A Reality of Too Much

After two weeks of traveling here and there and here and another there and here again...(whew!)...I have a couple of weeks before my work schedule comes back into full swing. Before you think, "Oh, how lucky for you," it's not as blissful as it seems. For the time being, when I am not occupied with my private piano studio, I am busy catching up on a to-do list that has become longer and longer from a life of overwork the past few years. I haven't just fallen behind on housework. (I haven't even finished setting up a couple of the rooms in the house we moved into a couple of years ago.) I've haven't just fallen behind on sleep. (Dark circles under my eyes are just now beginning to fade.) I've fallen behind on some things that matter most to me. It's not that I've forgotten about them or lived irresponsibly. It's not that I don't know how to manage my time.

I've had lupus for over two years. That's not that long. I've made a lot of changes in my life since my diagnosis. But if you look at my planner, aside from the multiple doctor appointments, you would have no idea that I have a chronic illness. On paper, I have lived a workaholic lifestyle. I looked ahead to these two weeks I have now and thought I could catch up in this time. I was wrong. Years of falling behind from pushing my body to the limit cannot be made up for in two weeks. This is my reality. So where do I go from here?

I will stop trying to live as though I don't have lupus. If I need more sleep, I will schedule time for sleep. If I get tired in the middle of a task, if I can put it down, I will put it down and rest. I will not let work be the reason I make unhealthy choices. If I allow my health to suffer, everything else in my life will suffer with it.

This is another day, O Lord. I know not what it will bring forth, but make me ready, Lord, for whatever it may be. If I am to stand up, help me to stand bravely. If I am to sit still, help me to sit quietly. If I am to lie low, help me to do it patiently. And if I am to do nothing, let me do it gallantly. Make these words more than words, and give me the Spirit of Jesus. Amen. -Morning Prayer for use by a Sick Person from The Book of Common Prayer

I will not be "all or nothing." I am a perfectionist and I finish what I start. Sounds responsible, right? Nope. When I don't have enough "spoons" I tend to operate in two modes: I typically push my body past its limit and attempt to borrow spoons until there are no spoons left in the foreseeable future. When this happens, I enter the mode where I look at tasks and don't even begin. (If you are unfamiliar with spoon theory, feel free to google it. I don't have enough spoons to explain it right now.) I am an all-or-nothing kind of person. But I don't want to be anymore. So what if I have just one spoon I can spare? What if that means I can start something but leave it undone? Maybe I don't have to complete a task in a day. Maybe I should give myself permission to take five days to clean all my kitchen counters. Maybe I should start living with the realization that something is better than all-or-nothing.

I will not pack my schedule to the limit so I can fill it with the things that matter most to me. I recognize that this means I may will need to cut things out and say "no" more. I recognize that this may will disappoint some people. I also recognize that there are people in my life to whom I want to give more. And until I cut some things out, I will never be able to do that.

I will do less to accomplish more. 

Lupus, Scriabin, and Holding On

Last summer, as a result of debilitating pain in my right hand and a refusal to throw myself a pity party, I decided I would not stop playing the piano. I studied Scriabin's Nocturne for the Left Hand. That's right. Only the left hand. This morning, I had an opportunity to perform this piece at my church as a part of my pastor's sermon. I was so delighted to be able to share my story through music in this way.

People have asked me, "How do you learn a piece like that?" I learn it the same way I learn all my other pieces: Practice. And a lot of it. But learning this particular piece takes more than just practice. It tests your character and patience. It tests your will and beckons your breaking point. So how do I do it?

I refuse to quit. I love the piano too much to stop playing. And this love brings me back to my piano every single day. Even when the pain is too much. Even when the piece seems too difficult. When I was diagnosed with lupus, I made a decision right then and there to not choose easy and to choose life. And everyday, I have to make this choice all over again: Do I want easy or do I want to live? Everyday, I force myself out of bed and choose a path that is hard so I can have life. But that is only part of the story.

I don't want you to think that I am really strong and courageous. I'm not that strong. I'm not that courageous. I wake up every morning feeling weak. And I have very real doubts and fears. I am every bit as human as you are. My aching joints and tired body don't let me forget it. So I hold onto God with all that I am. When I feel like I just can't keep going, He reminds me that He has brought me this far and isn't about to let me go. When I feel like I can't make it, He reminds me that He made me and His plan for me didn't end when the doctor told me I have lupus. And when I look into the unknown that lies ahead, I hold onto Him - a God who is bigger and stronger than me - and I trust Him with my life and my destiny. He makes things possible in the midst of my impossible situations. He takes my mess and makes something beautiful. He brings light to my dark places. And He holds me together when I am falling apart.

I will hold onto Him even when my hands are too broken to play and my breath is almost run out. And as I continue to hold on, I know that He will continue to hold me, too.