E’s Wellness Emergency Kit

We all have things that we automatically do when we are sick or feeling low, a kind of “wellness emergency kit” full of tools like your favourite CD, a hot compress, that favourite pair of pyjamas, or the classic, homemade bowl of soup.  What do you prescribe when you’re forced to nurse yourself?

Here are some of the tools in my wellness emergency kit:

Hot showers:  A quick, hot shower loosens up my body and soothes any inflammation I am feeling. Afterwards, I feel fresh and more ready to deal with the physical pain and stress I am experiencing.

Naps:  Napping has always been an integral part of how I manage lupus.  I always try napping first before taking any additional pain medication like tylenol.  Although, I always say that I have “sleeps” rather than naps.  It’s nearly impossible for me to nap less than two hours!

A steaming cup of decaffeinated tea: My top and most frequent choices are ginger, peppermint, lemon balm, and indian spice.

Steamed plantains: For as long as I can remember, my mom has cooked plantains for our family, mostly in the pan fried form with a sprinkle of brown sugar. When I was experimenting with nutrition and trying to cut out sugar, she encouraged me to steam them. They are healthy, naturally sweet, warm, filling, and my ultimate comfort food when I’m feeling sick and secretly wanting someone to take care of me. It’s as if my mom is in the kitchen making them for me!

Watching an episode of The Daily Show: I tend to watch Jon Stewart online (I don’t have a TV) at the end of a long day or when I am feeling sick because I know I’m guaranteed a laugh out loud moment.  No matter what has happened or how I am feeling, ending the day with laughter puts things in perspective.

Fuzzy socks and fuzzy blankets: Making sure I’m warm is always a top priority when I’m feeling sick.  My sock drawer is overflowing with thick and fuzzy socks and I have several blankets in my apartment aside from those on my bed. I’ve also been known to sit in front of my little heater, as well!

Candles: Creating a peaceful, quiet atmosphere when I am dealing with pain (physical or otherwise) is important to me.  Softening the lighting in a room calms and helps me focus on getting through the sensations I’m feeling.

An epic fantasy novel:  In the past, escaping into a really good novel has really helped me in the recovery process. Recently, I’ve fallen in love with fantasy authors like Guy Gavriel Kay and George R. R. Martin, but any great piece of writing will do the trick. The short opportunities to let go of my story/present moment and lose myself in someone else’s helped ensure that I wasn’t swallowed up by the fear, stress, and pressure that come with the recovery process.  I found that when I did come back to my story, I felt less overwhelmed and more ready to face my circumstances and move forward.

A little help from my friends:  When I am feeling really sick, I tend to want to be alone, but I’ve tried to teach myself that it’s okay to call a friend or take a quick drive to be with family.  It’s hard to ask for help and not feel dependent or incompetent, but it’s important to remind yourself that sometimes the healing is in the company you keep.

Measure by Measure

Fatigued from the humidity and heat of recent days, I opted for a non-heated yoga class this past Thursday, hoping to soothe my body and mind with a moderately paced practice.  I sank onto my yoga mat, peering curiously at the towels covering the mats around me.  This isn’t a hot yoga class, I thought, I’m not going to sweat enough to need a towel, right?  Right?? And before I knew it, I was in the midst of the most challenging and fast-paced yoga class I’d ever experienced. Towel envy descended quickly as my arms quivered through 108 primarily arm and core-focused poses in 45 minutes.  At the end of the class, we did three rounds of three different push up variations.  On my last leg of strength, I modified the pose by dropping my knees to the floor and accepting that my upward and downward movements would not travel very far. I exited the studio in a daze, embarrassed of my weak performance.  As soon as I crossed the threshold into the lobby, the instructor caught my eye and waved me over.  He scurried out from behind the reception desk and swept me into a big hug.  Sweaty and confused, I gaped at him as he gently released me.  “I just want to tell you how proud I am of you,” he said looking down at me with a smile, “I kept looking back to you and when others had given up on the sequence, you didn’t. You modified the pose and tried every time even if you could only move an inch.  You are an inspiration.” In truth, I felt like the furthest thing from “an inspiration” in that moment, but I felt the blood rush to my cheeks as I smiled and thanked him.

This morning, the sky outside is a clouded calm, the quiet and lazy beginning  to my August long weekend. I sit here remembering his kind words, as well as a very different morning, a very different beginning not so long ago. Three years ago today, I was admitted to the hospital. I was manic, riddled with inflammation in my brain, my chest lining, and a large majority of my joints. That day, any control I thought I had in my life was lost, my independence, my ability to work, my ability to reason,  even my personality had changed. My life as I knew it was wiped clean.

I guess you could say that since then, I’ve moved forward one inch at a time.  At times, the inches felt like triumphant victories, at other times, pathetic under achievements, but ever so slowly, my life is being re-written. I plan to mark this anniversary by one, a trip to the Farmer’s Market to celebrate the changes I’ve made to my diet, and two, by doing something that scares me and takes advantage of my “newfound” mobility (my first spin class – eek!).  And of course, I will mark this anniversary with gratitude for the people who have helped me get to this day and for the opportunity to continue to move forward, inch by inch, one failed push up at a time.

To my amusement, my Yogi tea bag quote this morning sums it all up quite nicely:

525,600 Minutes

August Long Weekend 2010:  The anniversary of my Lupus Cerebritis meltdown approaches. This year, a celebration is scheduled.  Not for myself, but for one of my oldest and most beloved keepers.  And just as she stood by my bedside a year ago, I will stand by hers on her wedding day (sans hospital gown, of course), as she enters into a new stage of life.

Shall I pour on the melodrama and claim that on that weekend, after a year of recovery, that I am doing the same?  Is it silly to think that I’m crossing a shimmering threshold into “better days,” or that I have been “reborn” into a different type of existence?  I can see the peanut gallery rising up to condemn me – “Arrogant little flake, isn’t she?”

I should know better than to hype things up the way I do, the way I cram forced symbolism and relevance on “anniversaries” and arbitrary events.  The thing is, I don’t quite know what to do with myself as I eye the calendar days inch closer and closer towards closing this particular circle of time.  It feels like I need to recognize it somehow, that I’m searching for closure for something that doesn’t end.  Recovery is forever.  Not just for me, but for everyone.

I have been on 2.5 mg of “Evil P” for over a month now, maybe even two… I stopped keeping track.  Incredibly, I have been making up every excuse to delay going off it completely.  I have a nagging feeling that there is indeed, a man behind the curtain, who could pull the plug on this beautiful, painless, and ultimately, illusory existence.  I guess I’m not feeling brave enough to find out… just yet.

And so, in about two weeks, I will surpass the “one year mark.”  I think it is best to quietly acknowledge it without fanfare or grandiose statements of what it means or where I “should be at.”  It may be best to do nothing, because there’s nothing to do, but to turn the calendar page.

Storm Chaser

A storm is brewing.  I dash out into the looming grey, raincoat in hand.  Seeds float down from the trees, swirling ’round my feet.  I kick my way through them, letting them slip into the bottom of my shoes as I stroll to my favourite card store.  The humidity warms my bare arms as I brush past patio onlookers.  If they look, I stand a little straighter.  I try to smile with my eyes.   Why not?

“The obstacle is the path.”  – Zen Proverb.  The quote pops out at me as I slowly rotate a rack of cards.  I let it pass out of my line of sight, but it lingers in my mind as I make my way home.  The storm is at my back, but I walk slowly.  

I think about how differently I would have felt about that quote a year ago.  A year ago, I wouldn’t have been able to take this walk.  A year ago, I could hardly breathe from chest inflammation.  A year ago, I had just lost my appetite and was on my way to losing 20 pounds.  I was about to reach the very edge of my tolerance for pain and fatigue and would be getting my first shot of Prednisone from an incompetent doctor.  I was a landslide.  I was about to crash down, crushing myself and all my keepers with me.  I would of looked at that quote with exhaustion and indifference.  “Yah, yah,” I would have thought, “I’m living it baby, now fuck off.”  

And now, pain-free, head full of hair, bubbling with lesser-moon-faced enthusiasm and Prednisone-reduction optimism, I nod like a self-anointed zen disciple.  I am startled by the truth of it and by my own ridiculousness.  It’s easy to be a mighty zen warrior when you’re in between wars.  

Down to 5 mg of Evil P, the lowest ever.  My butterfly rash comes out to play.  I’m a little more tired and prone to eating less, but it’s nothing I can’t fix.  And I am myself.  Truly.  I stand guard over my brain, armed with my zen proverbs and leafy green salads.  Ridiculous, indeed.

And so, the sleepy zen warrior scurries up the stairs and crosses the threshold of her hobbit hole.  Dry.