Bravo, Body!

Screen Shot 2014-12-09 at 11.06.19 am

My fingers sink into the springy grass.
The broad flat blades are baked from the equatorial sunshine.
There are people everywhere, milling around the edges of the sports field;
the air between me and them shimmers in the fierce midday heat.
White painted parallel lines disappear ahead to a point in the distance.
I can feel the nervous tension of the other kids beside me; calves bracing,
ready for the sound of the starters gun cracking the air.
I lift my head and fix my eyes on the end of my lane.  And we’re off!
My strong, long legs pump up and down and I realise I am gaining.
I take a gulp of air, reaching my arms and legs longer and further,
pulling the track in toward me as I run.
The wind pushes my hair back from my face and smarts my eyes.
I am in the lead!
I turn to see who is hot on my heels just in time to catch them overtaking me.
Go faster!  ‘Run, Rach… just gun it!’
I come in second.
Elated with my efforts.
Harried hot breaths heaved into my lungs.
I slap my legs in appreciative awe. I had no idea they could do that!
I am grinning; I race back to the marquee, punching the air in exaggerated victory.
I am Wonder Woman, with wings on her heels.  I can fly!


When I hear the term ‘body confidence’ I usually conjure an image of a woman in a bikini, walking that terrible distance from towel to the water’s edge at a relaxed saunter.  She isn’t tearing into the break, desperate for the water to hide her sunless legs.  She has all the time in the world to endure the unflinching gaze of other beach goers.  Maybe she pauses at the water’s edge to lift her toddler from her hip, to laugh with them as their toes touch the glittery cold foam of the ocean.  She has body confidence.

Or that voluptuous wonder of a woman on the pages of the catalogue.  She’s all curve and sass and I want to be her.  Her head has that little tilt that says she knows people recognise her beauty.  She’s comfortable with her shape and her style.  She isn’t plucking at her clothes or shrinking herself into a dark corner. The easy smile says it all, she’s full of body confidence.

Or, I remember what it felt like to be that kid, flying down the sprint lane with the wonder of legs that take you where you want to go, at speed, barefoot.  Confident in the knowledge that all you have to do is look at that spot on the horizon and go for it.  Your body will run you there, your feet will fly you where you want to go. Or maybe swimming through the water and arcing up to break the surface with your face. Climbing a tree and letting the wind blow your branch like the mast of a tall ship, holding on one handed, far above the ground.  Body Confidence.  A complete unswerving belief that what you expect your body to do, it will do.

Since my first Tilt Table Test, I have had confirmation that true body confidence might be a tad displaced.  I learned then, that my autonomic nervous system was struggling to regulate my heart normally.  After nine minutes upright, my heart stopped beating.   It’s the reason why I have a pacemaker now.  It wasn’t the first time it had ever happened, by any means.  But it was the first time I understood what was happening with my body.  It made me ‘body nervous’.  As my situation has progressed, the nervousness has grown.   I am a planner, I like to do as much as I can, whenever I can.  I love heading out with my family, if just to enjoy that undistracted time in their company.  But I have to plan, make contingencies.  Always wondering “Will my body manage that?”  “Can I cope with that today?”  “Have I got enough energy in the tank to keep myself running for that long?”.  I miss body confidence.   I miss the feeling that I can enter a store to buy Christmas gifts and walk until the list is complete.  I miss the feeling of swooping down the slope on my bike. Of being able to stand by the sidelines to watch my own daughter run her race.

Today, I’m off for another Tilt Table Test.  For a Dysautonomiac, this test is a gruelling event.  You can find out more information about how it is run, here.  But in spite of the challenge of having one, it is one of our most effective diagnostic tools. This time, we’ll be using the data as a baseline for before and after my first lot of steroid treatment. My pacemaker will probably get a chance to show off it’s skills, and I am so glad to know it is there, ready to kick in if needed.  But nonetheless, I can’t shake this Body Nervousness this morning.  If I could just run away I think I’d be sorely tempted!

Do you feel body confident?  Or are you nervous about what your body throws your way?
This morning, I am wrapping my arms around my bod. I am going to thank it for all the things it does well.  To remember again, all the complexities it is busy with while I am getting on with life. I’m going to celebrate what it can do and forgive it for what it can’t.  Bravo, body!  You really are remarkable, all the things you do; all the things I get to do because you carry me around.
Thanks bod. I know I complain about you a lot, but I am glad I’ve got you.  Let’s get through this thing…

Move over Marvel

Yesterday was my first day back home after my trip.  I’d been feeling less than super.  My bed and I reacquainted our special friendship and I spent most of the day hanging out there.  I got up around time for school pick up, and just then, the phone rang.  It was a private number, I sighed …I didn’t have time for another one of those telemarketers.  I picked up the phone anyway.
“Hello, is that Rachel? It’s Richard Steele. Immunologist.” 
Imagine that, said in a Superman voice and you are right there in that moment.

I sat down.
We’ve been waiting to hear more from the two immunologists I went to see a few months ago. I have an appointment coming up soon at the hospital to discuss The Plan. Last appointment, we talked about high dose steroids and IVIG.  IVIG has yet to be approved. He continued, “-has anything happened?” well now, there is a leading question!  My brain travelled instantly down the path usually accompanied by that question.  Why was he asking about my toilet habits? Was I supposed to do something in particular?
“…have you had any bloods or other testing done?”
Ah. Not about poo then.  The whole world is not about poos after all.
“No, not yet”
He apologised for the delay (have you ever had a doctor apologise for delay?!) and said he would send me through some new blood forms forthwith, get me referred for another Tilt Table Test and a Gastric Emptying Study.

I think they’re a bit like superheroes, these Immunologists I am seeing. 
Not in a crazy way, more in a “Woah… those guys are clever” kind of way.  It’s great to have lovely thoughts about doctors.  So often the experiences of Dysautonomia patients with doctors leads to other, less happy thoughts.  So I’m rolling with the loveliness.  If, in the end, they can’t help me, I will always be grateful that they have tried.  It’s all I need; people to try to help.

So those are the things I am looking forward to in the next wee while.  The tests are to establish baselines for comparison.  My last Tilt Table Test was in 2009.  It was a scary event, because it was when we learned that after 9 minutes of standing without the ability to posturally compensate, my heart stopped.  This time, I’ll have my pacemaker on board, but it is hard not to be nervous after the last time!   I’ve never had a gastric emptying study done, but I am interested to see what the findings are there.  Post-prandial bloating is a daily occurrence for me, so some data would be interesting.  The blood forms, I am also intrigued by.  I wonder what tests they have ordered?  Will they be different, or the same as I have had before?
Fascinating.  Scary.  Exciting.

Stay tuned for the next adventures of The Man of Steele (see what I did there?) and his accomplice Rohan The Illuminator.  Here’s a little sketch I did of them.  🙂