Speaking of Guilt and Unexpected Outcomes

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As I go about my diabetes-infused world, I keep coming back to this idea that I lack good ways for explaining the severity of Type I to people who don’t have Type I.  Keep in mind that I am being genuine and do not aim to exclude; there are loved ones out there who have invested in our lives enough to know the ins and outs of the situation.  I can remember writing that “update email” to my entire group of friends and family to describe how my diagnosis (and prognosis and osmosis and neurosis) had affected me after about two months of living with diabetes.  I wrote then (and still ponder today), “I’ve really been struggling recently with how to be myself through this whole experience.  I feel like I am constantly wavering between two extremes:  with half of my self, I want to show the world how capable I am and how people with diabetes can do anything anyone else can do and how it’s possible to live a healthy, happy life with diabetes.  With my other half, though, I’m desperate to show you how hard this has been and how annoying it is and how much resentment I have for the fact that this will be part of my life for the rest of my life.  Forever.  Forever and ever.  I know it will get easier and I know everything will come more naturally and I know exactly how to focus on the positive.  I do not, however, know how to tell people how frustrating this has been.  I feel like there are very few people who can relate to my exact position and I am so thankful for them.  For everyone else… it’s somewhat impossible… just as it is impossible for me to fully relate to people who are working through other challenges that I don’t personally face.”

 

How could it be that my thoughts from two months out and my thoughts from 16 months out are so similar?

 

While reading through other blogs this past week (specifically Jane Kokernak’s post on how to not beat yourself up after an unexpected low and Michael Aviad’s post on how to not beat up your pump after an unexpected battery fail), it seems as though others of us are also challenged with this multi-faceted frustration of facing diabetes in your everyday life… every day… and not quite knowing how to respond.  From what I’ve gathered, it’s all part of living with the disease, but I can’t wait until 30 years from now when someone reads these blogs (you know, in the Library of Congress, where they will have been published as leather-bound books) and laughs at “how hard they had it back then.”  As with other challenging situations facing other humans, I believe that it gets better.

 

Until I have it all figured out (which, undoubtedly, will also happen in the next 30 years), I’ve decided to shed the guilt whenever possible and make healthy decisions whenever possible.  As for making it clear to other people that the two-year-old inside me is alive and well, screaming, “I can do what I want!”…  I’m still pondering.

 

To illustrate, let me summarize my trip to Chicago this past weekend.

 

A little bit of this...

 

Giant Rice Krispie treats + walking a billion miles + 76% humidity = a very happy endocrine system for Miss Emily Patton

 

My BGs were actually the best and most consistent they’ve been in a while, most likely due to the constant walking I did every day.  I try to remind myself that if I don’t allow myself to take credit for the times when my BG is unexpectedly “good” (within my target range), then I can’t blame myself when it’s unexpectedly outside of that range, either.  I can plan and monitor and correct and respond, but I ultimately cannot control–the Diabetes 101 lessons I am re-learning every day.  And if I can’t control it, I refuse to beat myself up about it.  Easy, right?  All in good time.

 

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Lee Anne TobinSam GellmanshannonJessica Apple Recent comment authors
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Lee Anne Tobin
Lee Anne Tobin

Thanks Emily, for taking the time to help those of us who care for you understand what it’s like — at least, as much as we can from the outside, right?

love * lee anne 

Sam Gellman

An absolutely fantastic post Emily.  That back-and-forth between wanting to relate to others that everything is ok yet still also knowing that it is sometimes dangerous, normally a royal pain and always life-changing is very difficult.
 

shannon

excellent post!  i especially related to the section you excerpted from your email to friends and family. striking that balance is something i continue to struggle with.

Jessica Apple

I don’t expect to ever have it all figured out, so don’t feel bad!  I think diabetes brings out the two-year-old in a lot of us.  Well said.

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