Tuesday, October 29, 2013

Energy Crash and Burn: Defeat? Or a Time to Learn?

I love these steps. 

The cool moist air rushed to meet me as I pushed open the church's sanctuary doors. It had happened again, and I was not happy.

"It" was a familiar experience to me a couple of years ago: I'd wake on Sunday morning, take a shower, get dressed, and slather on some makeup. Even after dawdling over a cup of coffee and a bit of breakfast, by the time we headed out to the car to drive to church services, I would be able to tell that I was pushing my energy boundaries.

"It" played out true to form last Sunday almost as if all those months of rituximab-created energy had never happened. I felt as if I were in a time warp that zapped me back into my earlier Sjogren's years: as we drove into the parking lot, John looked over at me, and after a quick assessment, pulled up directly in front of the church. "Why don't you get out here, hon? I'll meet you inside."

The man knows me. I should just ask him how I feel instead of guessing for myself. He's always right.

After taking a seat in the back, I shrugged off my coat in the hopes of stemming the flood of exhaustion-induced perspiration.  My face began to slowly turn icy cold as surely as if I had begun to rub ice cubes over my skin. By the time John slid in beside me on the pew, I had serious doubts about my ability to participate in the service. The unwelcome symptoms of a crash and burn made me feel frustrated and angry.

Why now? I NEED this! I want to be here! I feel cherished, lifted up, and so loved here. I want my prayers to join with everyone else in this room. I want to listen to God's word. I want to sing. I want to hear Father's words of inspiration. And after it's over, I want to linger on the church steps, visiting and laughing and enjoying just being together with my spiritual family.

I toughed it out for the first half of the service, until waves of nausea began to wash over me and I realized that I wasn't experiencing any of the good things that I had wanted; instead I was just miserable. It was time to wave the white flag and call retreat.

All I had to do was tap John on the arm. He whispered: "Do you want to leave?"

I nodded, grabbed my coat and purse and followed him down the aisle after which I stood on the church steps in a fog. We rolled out of the parking lot with me in a sickeningly familiar posture: in the car with seat back completely flat, feet propped up on the dash, vents open and fan blasting cool air.

Dang. I hate the fact that this seems to be routine.

I was deep in thought as John carefully maneuvered the car around twists and turns in the road on our way home. I realized that there was one small thing that differed in this experience from years past.

I was thinking WHY? as I always do. But instead of thinking WHY ME? I was examining my morning routine step by step and evaluating the energy expenditure from each action. I was truly wondering WHY in terms of why this particular experience happened, and then WHAT could I do to minimize the chances that it would happen again.

Then my thoughts turned to wonder whether this little mental exercise was a capitulation to the reality of this disease. That I wasn't even allowing myself to entertain the thought of living without the presence of autoimmune dysfunction in my body. That I was giving in and giving up on the fight.


Another thought slowly pushed it's way though the brain fog: is this what real disease acceptance is? To skip the tantrum phase of a crash and move on to the recovery and strategizing part of things?

After ten years of living with Sjogren's, I certainly hope so.

Have I finally arrived there?


Unknown said...

Julia, I'm sorry you are having a crash episode. I have just built up to the good day followed with at least one day stuck in bed routine. It's taken me a long time to accept this as part and parcel of AI living. I'm still working to get to the shopping in the store phase but I have hope. In the mean time... Amazon Rocks! Lol. At least I can do my Christmas shopping through them. Positive thoughts and hugs for you.

Annette said...

That does sound like a good sign. Tantrums take a lot of energy, even when some is psychic. Here's a toast to strategy and finding ways to 'work around'.
I am taking the unbeliever route for the holiday we are going on (3 weeks in BC) and having a systemic shot of prednisone. Maybe that will even see me through Christmas. I do wonder if it depletes your reserves and ultimately you pay for it. Have only had 3 or 4 in 30 years.

I liked your Halloween costume. I'm still in PJs today after yesterdays conference. My husband got locked out and came to get me on the streetcar. Took a while.

LM said...

I still haven't learned. Maybe one day I'll eventually come to that point. It seems to sneak up on me, even when I recognize the signals. Or perhaps I'm ignoring them hoping it will all go away?

Wishing you well!

Mirabella said...

I have been following your blog for sometime now, but never posted a comment until now.

I only got my official diagnosis for Primary Sjogren's last week, but was declared a "suspect" already in Feb. Your blog has been my main source of information about this condition, and I would like to thank you for it.

Even though Sjogren's is common here in Finland too, it is very difficult to get information on how to cope with SS. I have now decided to follow your path, and have set up a bi-lingual blog (English and Finnish) in an effort to start collecting information and sharing my experiences in trying to come to terms with this diagnosis. I've added your blog address to my blog, hope that is ok: http://itchingandbitching.blogspot.fi

You are an inspiration on this side of the Atlantic as well! :-)

The very best from Finland!

Gill said...

Is this happening as you start to relax and unwind? This is one of the (thankfully) few symptoms I get. I have noticed that it happens as I stop/slow down rather than when in full flight. I go around the supermarket and then get to the checkout and the hot/cold buckets of persperation startand I wait in line. I stop what I'm doing and this starts around home. No prior warning, it never happens as i am actually doing any physical activity.

Amy Junod said...

Did you snap that picture Sunday? It sure is pretty with the leaves scattered about.
I hope that this crash finds a quick recovery.
Be well.

annie said...


Is this something you've suffered through since the beginning of your diagnosis, or has it worsened as your illness progressed? Just wondering what fate awaits for the rest of us.

I'm mostly okay, but I do have days, not as bad as yours, where I feel very weak and not able to stand up much, and this brings on light-headedness and nausea. Rest up and hope you get better.

Tana said...

Oh Julia, this sounds so familiar to me. Just a few weeks ago, I pushed myself to go to church because my in-laws were coming with me (hubby was out of town). About halfway through the service, I started sweating and feeling very nauseous and faint. I was unfortunately kind of stuck in the middle of the pew, but the second the closing prayer was said, I took off running and vomited in the bushes just outside the door. Yeah, that was not embarrassing. I don't even know how I ran in my heels, but I sure did.

I'm trying to figure out why Sundays are so tough on me because I too love going to church. I have a couple of suspicions - the fluorescent lighting and everyone's perfume. I know they contribute for sure. Plus like you pointed out, the effort it takes just to get ready is exhausting. This last Sunday, I did most of my getting ready on Saturday (shower and hair) and fared a little better.

Thanks for sharing - I thought I was the only one who had this problem with making it through church.