Fighting to Thrive

Have you ever felt yourself drowning in the chronic pain & illness sea?

That's where I've been the last few months. The fatigue that accompanies my disease had passed the point of ridiculous. I was so exhausted that I could barely function.

Honestly, the whole summer has been quite difficult in many ways.

But there is light now...

I finally kicked my way to the surface enough to call my primary doctor.

I treaded the proverbial water while I had blood drawn for labs and waited for the results that offered hope... my thyroid, which hasn't been behaving itself for at least two years now, had acted up in a new way.

Hope came in the form of a new thyroid supplement. So now every morning I swallow two tiny pills to help my thyroid know to do its job.

Hope came in the form of a call that said, "The doctor is happy to see you. He can see you in September."

So there's treatment now, and there's new options and expertise on the horizon.

I don't feel quite so much like I'm drowning now.

This is for you: the one who feels she's drowning. This is to say, "Please keep fighting."

You have a beautiful life to live. You are a unique gift to the world. So please keep fighting to live your best possible life.

That's what I'm going to do. And we'll do it together.

The "Chronic" I Want to Be

We had a big weekend, and Sunday afternoon I collapsed into rest mode. I thought I'd be okay if I got off my joints for several hours, but Monday I was even worse. My knees were on fire, my hip was in such pain I was nauseated, and I had no energy. Some with lupus and other autoimmune diseases call themselves "spoonies," in reference to the Spoon Theory written by lupus sufferer Christine Miserandino. In the theory, she attempts to explain to a friend how energy works when you have chronic fatigue caused by the battle of chronic inflammation and pain in a body like ours. She explains that at the beginning of every day you are given a handful of spoons and each task takes one or more spoons. Some days, she elaborates, you wake with only one or two spoons. It's those days that are killers, because you have to make deliberate choices about what's most important. Do you want to exchange your one "spoon" of energy for a shower? Or would you rather use it for running a load of laundry so your family has clean clothes to wear? 

Let's just say that Monday and Tuesday I was running on zero spoons. I rested as much as I could, around taking care of my daughters, and tried to fight the mama-guilt and the worry that comes with flares. I coached myself that a flare does not necessarily mean "new normal." Last winter, for example, I was in a long flare. I began having new symptoms like nerve pain down my leg. I got a cane and used it off and on. I spent a lot of time in my bed. I developed a new level of appreciation for things like electric blankets, wedge pillows to prop myself up, pajamas and pretty-smelling lotion. I worried a lot that my disease, Ankylosing Spondylitis, was progressing and that this would be my "new normal."

But finally, eventually, the flare eased, and I was back to my "old normal" -- battling pain, stiffness, low-grade fevers, and fatigue regularly, never feeling "good," but walking without the cane, rarely having the nerve pain, and not in bed nearly as much.

This week I worried. I worried that I, in this condition, am not Good Enough. I worried that my fatigue might overpower my will power, and wondered what life would be like with never ending Zero Spoon days. I worried that I would not be a good enough mama, a good enough (homeschool) teacher, a good enough anything.

Wednesday I was still exhausted and hurting and limping on that hip and those knees, but I had more spoons in my bouquet and I was able to run a bit of laundry and vacuum and tidy up the house. We had dinner with friends, although I didn't have spoons left to apply makeup or do anything with my hair or change out of comfy lounge clothes.

Today I made it out of the house for almost three hours. I took my girls to the park to enjoy the warm sunny day.

We did a couple of errands including picking up food for our kitten Mitzy, and checking out armloads of books and DVDs from the children's section of the library.

We came home and I finally made good on something I've been wanting to do with my girls for a couple of weeks: bake cookies.

Natalie helped me unwrap sticks of butter. Both girls helped me roll dough in sugar. We baked till barely golden brown and enjoyed a couple with squaty glasses of milk.

We waited till they all cooled and filled up our new-to-us adorable Goodwill cookie jar adorned with a kitty, bunny, bear and mouse.

By the time the oven was turned off, my spine was screaming in pain. I was almost cross-eyed from fatigue, but so happy to have mastered a day the Old Me did regularly. So happy to make memories of park fun and cookie baking with my girls.

I don't know what tomorrow holds. I don't know if at some point, the New Normal I fear will catch up with me. But I know that today we lived and loved and did what we could. I also know that without resting for a few days this week, I wouldn't have been able to do today. So this isn't a post to say, "Go ahead and use the energy you don't have because the memories will make up for it." No. We must become wise. We must know our bodies, know our diseases, know our triggers, and know when the pay off is worth it and when it's not.

Today I'm thankful for the energy to bake cookies with two little girls who call me Mama. And if I don't have any energy tomorrow, I will try to remember not to worry. I will do what I must and rest when I can and be thankful for two little girls who cuddle with me when I'm "down" for the day.

I will keep working on releasing expectations, and separating my sense of worth from what I am able to accomplish. Spoons or no spoons, I will be aware of what I am grateful for. Because I fully believe that what we are grateful for becomes enough, and gratitude creates the joy and peace we crave.

When all is said and done, I want people who knew me to say that more than chronically ill, more than chronically in pain, I was chronically grateful.

That's the kind of "chronic" I want to be.

Popcorn, Canes and Contentment

I'm in a flare (maybe the last one didn't end, as my husband says). I've been using the cane again and spending as much time as possible in bed.

My husband Jonathan is a tall French Canadian with broad shoulders and an equally big heart. Tonight I was in bed with my older daughter. We were just hanging out, discussing important topics. While she designed our dream house on paper in pink ink, I did some Windows Shopping (what I call shopping online when you're not intending to buy anything...) So she's sketching out our new and improved home and I'm perusing new bedding for our new and improved bedrooms, and out in the kitchen Jonathan and our younger daughter Natalie are making popcorn.

Pretty soon I hear him say to Natalie, "Okay, I think we're going to go eat in Mommy & Daddy's bedroom," and here come my sweet 5 year-old and her handsome daddy, carrying a tray full of popcorn, bowls and our family's favorite toppings -- brewer's yeast (aka nutritional flakes) and grated cheddar. A stool for my laptop and a box of wet wipes and we're ready. All four of us get arranged in the Big Bed and we put on a movie, dim the lights, and start munching popcorn. Pain or not, I'm content.

It's hard to feel so poorly so much of the time. The pain can be really scary; it can whittle me down to an exhausted, impatient version of myself. I worry sometimes not only about my future, but about what this may be doing to my daughters and my husband.

I read a quote that says something like children who are raised by a mother with crutches will learn to walk with a limp. The concept haunts me as I limp out to the kitchen this morning, holding onto both hall walls for support as my oldest runs unprompted to bring me my cane.

The new nerve pain is scary and hard to deal with. A simple grocery shopping trip reminds me how bad I am doing as I begin to limp and have to get my folding cane out of my bag. People look, confused, at this thirties mama who is wearing boots and a skirt, holding hands with a little girl and yet clutches a cane and walks with a limp. It is easy to just look down and not be bothered by their inquisitive stares, but I try to look up and smile at them instead. This makes me happy, because I am showing them that while I may walk with a cane, I am just fine inside.

Before I go to bed, I go into the bedroom my girls share, and check on them. I love this quiet time every night, the maternal feelings that wash over me as I smooth hair out of their faces, tuck them back in properly, pat their sweet little selves. Tonight I feel a lump form in my throat and I think, "If the trade off for all of this love and happiness in my life is AS, I will bear it gladly."

Writing Conference Weekend

Last Saturday I spent the day at a one-day conference put on by the Oregon Christian Writers. While the speakers were good and the conference, well organized, what I most enjoyed was simply being in a huge room full of writers all day. I loved meeting other writers, hearing about their projects, whether in progress or just an idea, their published books, and perhaps above all, their writing process.

I loved batting around ideas about how to stay focused, how to make time for writing when you have a full life, how to set priorities and boundaries, and how to take care of yourself so you can do your best work.

Another wonderful part of the weekend was exchanging contact info with other writers and bloggers so we can stay in touch and cheer each other on.

Although the conference was just one day, I took the opportunity to turn it into a writing retreat, by book-ending the conference with a hotel stay the night before and night after. This way I had time to write, enjoy some solitude and process what I learned before it was time to go back home.

Have you ever experienced a rapid perspective shift when you get out of your normal routine? I sure did this weekend. I realized that trying to run away from my health problems doesn't work, I haven't made it up, it's real and I must find a way to acknowledge it and take care of myself even in the midst of dreams and travel.

I couldn't believe how tired I was. It was really frustrating, to the point of tears, how much time I had to spend resting instead of writing. It was great to get some writing done, and I was thrilled to enjoy the conference, but I had to realize at one point that if I don't take care of the writer, the writer won't be able to get any work done.

Sometimes when we dream, at least I know this is how it's been for me, we imagine a fantasy world without factoring in challenges or realities. I realized a few years ago that dreams up close are less glossy. When a fantasy becomes reality it's wonderful, of course, but it will include things you didn't count on when you were dreaming. My writing conference/retreat fantasy became reality this weekend. It was wonderful. It also included the reality of pain, a short night due to pain, exhaustion and some tears. I left my house in the pouring rain with a crying daughter. These things are reality.

I think it's important to remember when dreaming, that while your dream can be wonderful, perhaps even better than you dreamed it, it will also be real life when it comes true. Maybe if we know that going in, we can create reasonable expectations.

Here are some of the realizations I had while away:

I am very blessed to have supportive people in my life who help me make dreams come true. Special thank you to my husband and my parents here.

Not all days will be word count days. Some days will be resting days so that I can create another day.

Continuing to make space in my days for creativity and for my writing will yield results, even if it's just a bit of time consistently. Consistency creates results.

If you have a dream, what's stopping you from making it a reality? Get real and honest with yourself here. Write it down and process it. Then figure out the first step. For me, one of my first steps was that it was time to see the doctor again and try to implement a new treatment plan, so I can be living a more full and vital life.

I have to take my own dreams and goals seriously before anyone else will. Similarly, I have to ask for what I need and want.

I hope you join me in taking your dreams and goals seriously, and figuring out the first, or next, step to pursuing them. No one's going to do your work for you. You make it happen! And when it does, give yourself a bit of grace with the realities, and don't forget to say thank you to those who helped you along the way.

Finding the Balance with Chronic Disease

It can get discouraging -- the spectrum of pain and ability (or dis-ability) my health can span in a single day. Yesterday, despite raging back pain, I was able to dress nicely and go to church, chat with friends and draw encouragement from church members who took the time to thank me for my writing and even a family friend / deacon who always notices when I make it to church, and as he is aware of the challenges of my disease, will say to me affirmingly, "Nice to see you vertical!"

It is truly amazing sometimes, the amount of pain I can be in and still appear "normal." Ankylosing Spondylitis, especially if the patient does not use a walker, cane, or wheelchair to get around, and is not yet fused into a curved, stooped position, is truly an invisible illness. I look normal, but inside inflammation rages through my spine and joints and I experience the pain others can't see.

One normal day for others is like a marathon for me. I am so tired and being out and about tires me with systematic efficiency -- draining me of energy and pumping up my pain levels. Something as routine and simple for most people as grocery shopping, can leave me too exhausted to speak, feverish, and in severe pain.

It's really frustrating that people can't understand. It's awful to think that people around me may think I am making this up, faking it, or that my pain is really just some mild aching.

Pre-diagnosis, I enjoyed an outdoor walking routine. Never one to enjoy exercise or athletics, I discovered walking offered many positive benefits: increased energy, decreased stress and anxiety, improved posture. I loved my "artful walks" -- enjoying the skyline, backdrop of pastel sunsets to black tree silhouettes, music in my ears thanks to my MP3 player, fresh air, and the scent of laundry detergent from neighbors doing their laundry. Sometimes I paused to capture one of these images with a camera, or to jot down a snippet of a sentence in a notebook. Inspiration was all around.

I became unable to continue my walks about a year ago -- three months before I was diagnosed. The walks caused a spike in the pain and limping, and elevated my low-grade fevers.

This week I determined to try again. According to Arthritis Today magazine, walking is an excellent form of exercise for arthritis. Walking lubricates the joints, releases pain-fighting chemicals... It sounded great to me.

The first day I walked 1.5 miles, divided into two walks.

It was wonderful! I was back to my old routine. The beautiful afternoon or pre-sunset skies, the fresh air, the drifting laundry scent hovering in my neighborhood right along with a very real sense of hope. I was strong, I would prevail, and I would show Ankylosing Spondylitis who was in control!

The next day I went out again for another 0.75 miles. Not that far. The walk increased my spinal pain, and by the end I had knee and hip soreness. Oh well, I mused, I was strong and I would walk through it and soon I would be better.

By the end of the next day I could barely gimp through my tiny house, my hip on fire with inflammation, the ligaments and muscles that support the joint feeling pulled and bruised.

My spirits and hope sank.

What if I wouldn't be able to reclaim my walks? What if walking for exercise aggravated my hip joints to the point that it claimed the ability to walk even the small bits I need to maintain my life? I just don't know what the future holds for me with this disease. I don't know if I may be one who needs to have hip replacement surgery, or ends up in a wheelchair.

I'm 32 years old. I'm not prepared to choose a cane or use a wheelchair for trips to the zoo or the mall.

It's a very isolating sense of worry; a very isolating pain. I thank everyone in my life who takes me at my word when I say I am exhausted or in severe pain, even when I "look normal" and am smiling.

So while I take a day or two off from my walking and turn to research to try to find the answers to my questions, I cast out the proverbial net and pull in my thrashing, fighting hope, and know that tomorrow may be better than today.

I will keep fighting to find the balance.