Walking that tightrope #showmeyourpump

Everyday this week while compiling T1D in the News, I continue to see articles, blog posts, tweets, and the like about Siera Sandison, Miss Idaho 2014, and her #showmeyourpump campaign. I posted my #showmeyourpump photo last week, and I have loved all the openness I have seen on social media about showing pumps, pens, CGMs, and the like. People aren’t shy about showing off their diabetes!

Ever since the big news about Siera Sandison wearing her insulin pump onstage for the Miss Idaho competition, I have been trying to follow her social media accounts to keep up to date on her campaign and all the awareness she is creating.  Yesterday she tweeted:

For upcoming blogpost: what is the most common question or misconception you encounter when discussing diabetes with others? #showmeyourpump

Well, I’m going to take a break from writing about my internship and take this opportunity to respond to Siera’s blog prompt!

Up until this past year, I honestly didn’t experience many of the outrageous questions or misconceptions that many people with T1D encounter everyday, but simply because I wasn’t very open about sharing my diabetes with anyone.  Sure, my closer friends and family knew I have T1D, but I never intentionally took the time out of my day to bring this topic up to my more casual friends, acquaintances, or introductions.  If the topic came up I would give the simplest explanation of T1D as I could, leaving very little signals that welcomed more conversation on the topic.

Sure, I’d get the occasional, “Wow, so you really have to watch what you eat, right?” or “You have diabetes?  But you’re so slim!”  But I tried to clear up those misunderstandings as quickly as possible and move on to another topic of conversation, unless the person I was talking to shows a genuine interest in learning more about the disease and how I live with it.

Only in the past year or so have I gained more of a confidence in talking openly and freely about living with T1D without trying to end the conversation as soon as possible.  I’ve learned that by welcoming conversation and inquiries, yes, I do get more crazy questions and misconceptions, but I also receive a lot of understanding and desire to know more about the disease and how I manage it.

SO now to answer the actual prompt.  After thinking on this for a while, I guess I’d have to say the most common question or misconception I encounter when discussing diabetes with others is the following: People seem to think that as long as I do the “right things,” (count carbs, check my blood sugar, and give insulin) I am able to perfectly control 100% of my numbers 100% of the time.

FALSE FALSE FALSE!

Oh HOW I wish this were true.  Seems simple, right?  My pancreas doesn’t make insulin, so as long as I calculate the right dosages of insulin to take with my meals and my high blood sugars, everything should be a-okay, right?  Wrong.  Type 1 Diabetes is a complicated disease.  Every day presents a different set of circumstances.  While other people’s bodies automatically regulate their blood sugar levels perfectly no matter what curve ball life throws at them, my body is left powerless to the threats that stress, exercise, food, sickness, and a dozen other things pose to my blood sugars.

One of my favorite online posts explaining the exhaustion that comes with trying to “perfectly” manage blood sugars with type 1 diabetes is written by Riva Greenberg, who describes Type 1 diabetes in this way:

 Type 1 diabetes is a tightrope walk — all day and all night taking action to anticipate, prevent and recover from my blood sugar going too high and too low.

Yet no matter how hard we try to balance on that tightrope, type 1 diabetes is relentlessly unpredictable.  What works one day doesn’t work the next.  The insulin that you so perfectly calculated to cover that bowl of cereal you just ate? Turns out it wasn’t enough.  Your doses have been the same for weeks and producing nearly flawless numbers?  This week they decided to be different.

While I understand why people who don’t have T1D would think it’s a perfectly controllable disease, I still get frustrated when they ask me questions like, “Oh, your blood sugar is high today?  Why?  Did you eat too much?  Did you not calculate your insulin correctly?”

No, I didn’t eat too much, and yes, I calculated my insulin correctly.  There are just way too many other factors in my body affecting my blood sugars that I am not aware of.  The body is unpredictable.  It is impossible to know every single thing that is going on in my body every single second of the day.  It is amazing how seamlessly undiseased (is that a word?) bodies work to stay functioning every single day.  Only through having T1D have I gained a true appreciation for how our bodies work.  Who would think that missing one little hormone could have such an effect on how the body works?  It is SO much more difficult to control blood sugar levels manually than it is with a functioning pancreas doing it for you.

Writing this post reminds me of a hypoglycemic episode I had back in March while I was at school.  I was studying with my boyfriend, Matt, near the fireplace at school, when all of a sudden he noticed I was typing the same sentence twice in an email, zoning out, not reading as quickly as I normally do, and dozing off even though it was only 8 pm.  He realized I was going low.  I didn’t have my CGM in that day, so I hadn’t been alerted to my low blood sugar (I had also been struggling with hypoglycemic unawareness, not usually feeling low symptoms until I am in the 50s or 60s).  He tried to give me sugar tabs, but I was belligerent, stubborn, and slightly violent in refusing them.  (I don’t even recall this episode past trying to write the email I mentioned earlier).  He eventually called 911 and an ambulance took me to the hospital, where my blood sugars was 19 mg/dl.  People, that.  Is.  DANGEROUS.  I remember coming to and seeing a team of nurses and EMTs surrounding me, with Matt in the corner of the room.  My blood sugars came up quickly and I was able to leave the hospital that night.

Why do I bring this story up now?  Because for the days following this episode, I was bombarded with questions.  Going to a very small university, word spreads quickly (as do prayer requests – I go to a Christian school, so many had been praying for me when they heard I was in the hospital).  I felt very overwhelmed with care and concern and was very appreciative for all of the love that was shown to me.  I felt cared for.

Yet I also felt a little intruded upon in some ways.  Some people asked me questions (with the best of intentions) like, “Why did your sugars go so low?  Did you not eat enough for dinner?”  or “What did you do, how could you not have known they were dropping so quickly?” or even “Hadn’t you been managing your numbers well this week?”

While I can make some educated guesses as to why my numbers dropped so quickly, the mysteries of the human body are just that: mysteries.  I can try as hard as possible, I can devote all my time and energy to blood sugar control, and I can vigilantly pay attention to every bump in the road that might cause my blood sugar to spike or plummet, but ultimately it comes down to this: my own efforts will never quite measure up to what my body was made to do on its own.

Until a cure comes, I will continue walking this very shaky tightrope.  But I might lose my balance a few times…  It just happens.  🙂

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3 thoughts on “Walking that tightrope #showmeyourpump

  1. Very well-written, making one feel the life’s road of managing sugar-control while living life. All of our “seamless” bodies don’t stay that way. We, all, need to embrace each other with a desire to help. Curiosity can be filled; but, loving encouragement needs to be given in return. When the latter is lacking, one can feel deflated. Overall, people need to be taught about Diabetes, beginning in health class in elementary years and continuing through highschool.

  2. Your posts have given me a better understanding of diabetes and the struggles the disease poses on a daily basis. Our bodies are complicated and don’t always work the way we want them to. But God knows exactly every little detail, and He has your body and this disease in His control. And he has placed loving, concerned people in your life including Matt, who I am so glad was with you that day to take action when you needed someone to step in.
    I think it is wonderful that you are feeling more comfortable sharing your experience with others. Although no one wants to deal with a chronic illness, “…we know that in all things God works for the good of those who love him, who have been called according to his purpose.” (Romans 8:28). There is a bond that is formed between people that have experienced the same struggles. (I felt that with your mom when I first met her.) Only someone that has been through something can truly understand what it is like. God will be in the middle whenever you share your story, and He will mold it into something wonderful for his purpose.
    God bless you, Amy. Enjoy that “Big Apple!”

  3. Pingback: 10 Things I’ve Learned from Living with T1D | Dia-be-terrific!

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