Monday, May 28, 2018

Held Hostage by the Uncontrollable

Numbers, numbers, numbers.  With three they have been anywhere from low to high whenever we check.  Haven't really had all three in range at the same time.  Each is so different.  Have you ever juggled?  That is all I seem to do now but I never learned how.  When our second was diagnosed there wasn't education on how to handle one high and one low at the same time.  We just muddled our way through.  And now...three.  And I feel like I'm failing all three of them.  My brain was full with just one and now I can't seem to keep it together.  And all I really want to do is sleep.  I think I'm at the boiling point.  You know, put a live frog in a pot of water and slowly bring to a boil and he won't jump out.  If you already had a boiling pot of water and put him in he'd jump out immediately.  Acute crisis versus chronic.  If someone is severely low (has happened in the last week) I can feel the adrenaline push me into overdrive. I react.  I have to.  No choice.   Fear sucks.  Anxiety sucks.  Depression sucks.  Diabetes sucks.  I hate middle of the night 3am pump changes and/or insulin shots.  I despise trying to navigate insurance.  And the stress that comes when we can't get more insulin "just yet" cause it's not time or insurance won't approve what the endo prescribed.  Ugggh.  Internally I am constantly, silently screaming.  So many hoops.  How do you live a "normal" life with this crap?  Yes, I work.  I volunteer.  But friends seem to have disappeared, and it's just us in the middle of the never ending storm.  Held hostage by the uncontrollable.

And I know it's not just us.  I have a friend who was on his last 30units of his insulin and he couldn't get more...his endo wouldn't write the script because he hadn't been in recently.   The doc wouldn't write a script for medicine that keeps this person alive until he made an office visit.  Thirty units doesn't even last a day.  Let that sink in for a minute.  Or google Kevin Houdeshell.  This is real life here.  Life and death.  And choices.

SugarBear seems to like to run his BG a bit higher.  I think he is afraid of lows.  Drago doesn't like to check his.  I think he doesn't want to have the responsibility of the choice a number will dictate.  And Cro wrangles with going out and having to publicly take care of his disease.  He doesn't want to be judged.  I'm tethered to these boats but they are not mine.  These are just my thoughts and perceptions.  Everyone has there own perspective.  We're all in the storm.  My heart belongs to my family and our own boats but I don't have all their struggles.  I can only surmise their challenges.  And I get reminded often that I don't truly know how they feel.  I don't have Type 1.

Out here it doesn't have to be lonely.  We can gather all our boats together and face the tumult.  We can work towards that normalcy but pencil things in because you never know when a wave will crash over you.  But you have to stay afloat.  Together.






1 comment:

  1. Type 1 parents are the heroes of our wider community. I cannot imagine being the parent of a t1 because i knwo how much difficulty and worry I gave my parents (mom really).

    The good news? I am 43 years post diagnosis and doing well. There is hope.

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