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October 8, 2019

Life has little regard for human comfort.

Journal Entry #61

Life has little regard for human comfort.

People seem to say, “when it rains it pours!” or “things always come in 3’s” as if it excuses the discomforts that life throws at us.  We just have to deal when things go awry.

We don’t get to choose what we go through in this life.

The only thing we get to choose is HOW we go through it.

This phase of healing is particularly hard.  My body has developed a new language that I have not learned to translate yet.  I spend so much time listening to it, but I don’t always know what it means.

My heart is racing…is it because I am stressed or scared?

I am so tired…did I do too much today?

My body aches, everywhere…where did I overextend?

My head is throbbing…is it chemical or am I overtired?

Usually, I just don’t know.  Which means it is hard to know what it needs. Rest?  Fluids? Quiet? Vitamins?  Minerals? Exercise? It is a guessing game most days.

I am having more good days than not so good days these days.  I feel like I turned a corner last week.  I can’t put my finger on exactly what it is that changed, but I am having moments of clarity, sudden bursts of energy and strength and a general sense of wellbeing.  Because I am getting glimpses of “normal” I know that it is possible!  However, when those other moments hit, it is so frustrating and derailing that I just want to scream “Let me off this fucking rollercoaster!”

I had two amazing days last week.  I did my regular wellness and detox program, I saw a few clients, I walked with the kids in the climate strike, watched/supported the schools Terry Fox Run and Officiated a wedding ceremony, which a pre-Leishmaniasis Juli would have been able to accomplish without batting an eye.  Now, well, let’s just say I went to bed at 6pm on Friday night and woke up 9am Sunday morning.  I woke only to pee and have a snack.  Too much, too soon?

There were no warning signs.

None.

My body was go…go…go…and my brain was like…yes!…yes!…yes!

Until it crashed.

Bottomed out.

Crumbled in protest.

I couldn’t put one foot in front of the other.  I simply could not go one step further.  It was all I could do to crawl to bed, where I slept deep and peacefully for more than 24 hours.

It isn’t like my body produced warning signs, there were no red flags, no thoughts that I had done enough for the day, no heart blips or aches or pains to slow me down…it was as if everything was in sync and I was me again.  I could think clearly, organize thoughts, lists and make decisions.

Until I couldn’t.

I haven’t had a day like those since, but I know that they are possible.  And that is exciting for me.  I find myself dancing between hopeful and hopeless these days, which is an exhausting dance.  This internal battle between my brain and body happens in either one of three scenarios:

  1. My body is amazing and I can do anything I want – even my brain agrees!And then BAM! Out of nowhere my body quits and my brain says, “just push through it, keep going!” and my body full out protests.  They battle and the body wins.
  2. My body is amazing and I can do anything I want – but my brain disagrees! I do things and make few accomplishments, usually limited by stupidity such as putting the compost bin in the fridge, or forgetting the thing baking in the oven, or unable to comprehend the email in my inbox to know how to respond.  Then my brain wages war by using negative and hopeless thoughts that create stress and make me just want to climb into bed until a new day starts.
  3. My body is in pain.Complete discomfort from the hair follicles on my head to the tips of my toes.  It hurts to walk, talk, breathe and blink.  And the brain? It wants to accomplish the work of a fast-paced CEO and doesn’t have the means to do it.  So, instead it tries to coax my body into action, sometimes talking gently and persuasively…until it is so frustrated that it starts in on the negative self-talk until my brain feels just like my body.

One of these days, all parts of me will sync.  I KNOW it will come together.  I have had a glimpse and I know it is possible!

I am still in the 1.5 hours of self-care routine/day in the thick of the detox process.  As I get stronger, I am seeing 4-7 clients a week, depending on how I feel.  This is a far cry from the 30+ I would typically have seen before Leishmania.  My family is seeing me “well” or “well-er” than I have been in the last 7 months.  And they are resorting to old, familiar patterns of just letting mom do it. We have had family meetings about re-setting this dynamic and I am acutely aware that I need to re-teach my family how to treat me and our household.  If only, my days were predictable, this would be an easier task to navigate.

Life carries on.  Canyon in grade 8 now, doesn’t want to miss any opportunity at school and really, why should he?  So, there is extra running and coordination to accommodate his schedule.  Faith is hormonal…some days I don’t even recognize her….and some days she is humble and helpful (perhaps a reflection of me?) Tim is back to work, which means he is travelling again, leaving me the primary keeper of all things in his absence. And I am trying to ease back into work myself.  Of course, with all of these players in place, life will still throw curveballs. Like the fridge conking out.

Life has little regard for human comfort.

So, with Tim away, and after seeing 3 clients in one day (which I can do no problem if nothing else transpires), the kids and I spent 3+ hours sorting spoiled food from the fridge and freezer, baking and cooking off that which was salvageable…and moving the salvaged condiments and a few vegetables to the fridge in the trailer. Then, I crashed…again.  Only to awake the next morning to the realization that I didn’t turn the fridge in the trailer back on properly. We had just finished winterizing it before Tim left and turned off not only the propane, but the breakers and switches too.  I thought I was being smart by making sure the trailer was plugged in and the light was on…but that part of my brain that deals in common sense must have been shut off that day because clearly it was the “wrong” light that I saw come on.

Insert Day 2 of pitching and tossing spoiled food.  This time without the kids help.  Not a chance they will ever be coerced in to helping to do that job again!

So, today we are on day 6 of no fridge.  It is not even 2 years old…but the warranty department still hasn’t found a time to “fit us in” for an inspection.  Not having a fridge is a huge inconvenience.  But it is also an opportunity to see just how blessed we are to have such a modern convenience…and also to have food to fill it with.

I can laugh about it now…how all three of us were gagging at the same time as the chunks of milk were clumping down the drain and the shrimp ring was so rancid it couldn’t even have been used for fish bait.

I don’t get to choose what life throws at me.  I only get to choose how I go through it. 

I put my head down and deal with it.  Work through it.  Find the bright side.  Ask for help if I need it.  Stay calm.  If I don’t have answers, I make a list (so I don’t forget) and then call or text the appropriate helpers.  Sometimes life sucks, and sometimes even in the suckiest and most rancid parts of it, I find….love.

Love?  In a rotting fridge, you ask?

Well, not entirely.  After I crashed and slept 12+ hours to face a new day, a friend offered to take Faith shopping…at a Mall!  Which is a really big deal, because I don’t do malls.  (That is a whole other blog in itself.) She was so excited!  Canyon had a birthday party, which meant I had time to myself for the day, to work at my own pace to continue cleaning the parts of the fridge and to juice and preserve the salvageable vegetables and fruit.  Although the events of the last few days had no doubt taken their toll, the day after was brutal.  It was a total body pain day.  No chance of making it to church…in fact, I slept until 3:30pm.  When I woke and came upstairs, I was overwhelmed with relief, that a friend had dropped dinner off for my family.  It was hot and ready and all I had to do was boil some noodles. What sweet relief!  Tim arrived home after 5 days away, the kids had second helpings and I found a comfy spot on the couch to rest some more.

So, yes, absolutely LOVE.

This community that we live in, continues to amaze me.  The generosity and support…the phone calls and texts….the emails and visits.  Simply, awesome!  Even in the midst of molding cucumbers and clumpy yogurt, I was not alone.  Never, through this whole process of Leishmaniasis have I ever felt alone.

What a beautiful gift!

Life has little regard for human comfort, but I have decided that that is okay.  For this is when I learn, grow and expand in gratitude.  I might not get to choose what I go through in this life, but I DO get to choose how I go through it.

ONWARD!

Xo Juli

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