Diabetes and the Unexpected: Ground Rules

This is the first post starting off Diabetes Blog Week.  Check out a bunch of fabulous posts on this topic here!  

The prompt says it best: “Diabetes can sometimes seem to play by a rulebook that makes no sense, tossing out unexpected challenges at random.”

There is no comprehensive playbook.  It’s like every other job: a lot of it you learn on the fly, and it’s not all covered in the manual.

Like an employee manual though there are a few guidelines to not forget.  This year, having reached a decade birthday and my 17^th year with diabetes, I’m learning the hard way that it’s good to not forget about the basics.  Ie check your blood sugar before dosing insulin.  Take exercise into account. Don't let yesterday's frustrations about high blood sugar affect the way you carb count today. Make sure your car has at least a quarter tank of gas during a bitterly cold winter.

That last lesson was painful.  I was reminded in January that I had become too comfortable with my routine and too slack with the rules, and a long walk in the freezing cold with much cursing ensued.  I made the same error in judgment months later, this time relating to diabetes.

A few weeks ago I had to wait up with a low for the first time in my life.  It certainly wasn’t the first time I’d experienced a low at night, and while they are rare, I usually just wake up and find my way to the candy dish.  On this night I had accidentally overshot my insulin by ten units, and it was the first time I had to stay awake hours to make sure everything leveled out, coincidentally on a night when I just wanted to go to bed early. 

It wasn’t because my glucose monitor malfunctioned (that I know of, at least), that my medication went berserk, or that the moon did its thing where it plays with blood sugar.  The insulin worked as it was supposed to—the problem was just with the person using it.

I didn’t test my blood sugar before I gave myself those ten units while out with friends for a beer and a slice.  I assumed my blood sugar would still be riding high from the watery spaghetti they served at a charity supper earlier.  I didn’t take into account that the insulin I took for that was still running in the background, and I had run a 10k that morning so my body could still be in workout mode. 

Stupid mistakes, I know.  When you’re constantly adapting to moving parts, knowing 1+1 doesn’t always equal 2, and having lived with a condition like this for so long you start to believe you’re pretty practiced at steering this ship in wild waters.  So you go loosey-goosey with the basic rules like a grammar student who, having learned the ins and outs of punctuation, assumes he’s an expert then throws caution to the wind and starts chucking commas all over the place for artistic effect.

I got home after the pizza soiree and immediately checked my BS.  It was 110.  Crap.  That meant a bunch of insulin was coming on board to do its job and there was no job to do.

It was my fault, but I was frustrated.  I was tired of the unpredictability, of the highs and lows, of doing simple math that commonly seemed to come up with the wrong answer.  So I bathed in self-pity and the next day decided to make peace with it.  There were things I could change about my perception of diabetes and thus my experience, starting with respect for the basics, and most importantly taking a lighter mental approach and learning to roll with the punches that were most certainly going to keep coming my way. 

You can’t be Type A about it.  I mean maybe you can, maybe that works swimmingly for some people, but I’ve found it’s easier to get by when you expect the unexpected and let it go.  There are two rules of diabetes: respect the ground rules, and know there are no real rules. There you have it: an old cliché, paraphrasing from Fight Club, and a Frozen reference in the same paragraph.

Another nerd note to round this all out—when I looked up “unexpected” in an online thesaurus it listed “wonderful” and “amazing” as synonyms.  Other words related to "unexpected" also denoted more positivity than unpleasantness, which I was surprised by.

But I shouldn’t be.  Nothing should surprise me anymore. J

Message Monday: What I’m doing here

I’m stoked to take part in Diabetes Blog Week for the first time this year!  Thank you Karen (@KarenBittrSweet) of the Bitter Sweet Diabetes blog for doing all the work to make this a wonderful week to learn from each other and discover new D voices!  Read them here.

I set up this blog in 2014 because I had known for a long time that going it alone wasn’t working anymore.  I’ve lived with diabetes for 16 years—most of them poorly controlled, the last few well managed, and all of them alone.  I could count the people who knew about my diabetes with two hands and the people I’d personally told on one.

When I emerged from my “dark ages” of diabetes and got back on track I realized my numbers were fine, but mentally the disease was still wreaking havoc.  My A1Cs were the best they’d ever been, but I still couldn’t talk about it.  I had neglected a key part of diabetes management: the psychological need for support.

So I went where the experts, my diabetes peers, were: online. 

Finding the online community was invaluable.  I found people I immensely respected who were following their dreams, having families, and advocating to make things better for people with diabetes.  

Why online?  For one, you get to connect with, learn from, laugh and cry with people.  Two, you don’t have to wear pants or makeup while doing it. 

When I moved to a smaller town from the metro area I sadly had to say goodbye to my local diabetes support group and hadn’t been able (read: hadn’t tried) to round up people to start a group in my new area, so I went online.  Like in the support group I sat back, listened to some stories, and slowly joined in, ever appreciating the courage and resiliency of the people who made me proud instead of ashamed what made us different.

I also hoped to add my voice, because so many times while reading a book or a blog by an author with diabetes I got that feeling that screamed, “ME TOO!”  I wanted to share the hard-won lessons I’d learned from my mistakes, the facts that changed everything I felt about diabetes and still rely on daily, in hopes they are of any use to others. They are:

• You Can Do It

People living with diabetes are incredibly strong.  We practice many skills throughout the day: constant math for carb calculations and insulin doses, medical equipment troubleshooting, coping skills to deal with constant strain and unpredictability, and on and on.  We’re awesome, and we need to acknowledge that.

We’re often reminded by well-intended people, organizations, and media that dangers and dire side effects are possible with diabetes, but only in the diabetes community is it made clear that your life is more full of possibilities than it is of limitations.  When I diagnosed I thought I had to give up my dreams for the future.  Now I realize that that misconception, not diabetes, was what stood in my way.

You can do it!

• It’s Easier with Gratitude

Everyone with diabetes knows it’s no cake walk.  While the numbers go up and down they sometimes take your moods with them, and either one can go off the rails without provocation.  Diabetes is a party that never ends, even when you get tired. 

It’s expensive too.  I’ve left the pharmacy a number of times with tears in my eyes.  After indulging in self-pity for a while I try to remember that I’m incredibly blessed to have access to life-saving medicine, even if it costs me dearly. 

On days when I’m mentally stuck in muck, when I’m ready I remind myself I’m lucky to have made it this far and to have today.  I’ve found blessings are way more fun to count than carbs.

• ...And People

It’s also easier with people in your lives who support and accept you.  I used to fervently defend the belief that you could do it by yourself and didn’t need anyone to be successful at diabetes management.  I suppose in some ways that’s true, but it’s lonely, and for me at least, emotionally damaging.  I still love me some independence, but engaging with people about diabetes is empowering, educational, and inspiring.  I’m encouraged to challenge myself and do better.  It’s gotten easier to talk about it with other people in my life and support those I know who live with diabetes, which is a wonderful feeling.

Thank you for that.

What's in a Name?

The title of this site was something I toyed with for a while. 

It wasn’t my first choice.  But like other surprises and hurdles life brings, it brought me back to the most fitting place.

By the time I had thoroughly considered every angle, re-examined every possible negative scenario, and finally decided to launch this website, the titles and URLs I had considered were already taken by people just as creative and certainly more prompt.  The title “A Shot in the Dark,” which I imagined would speak to managing diabetes in secrecy and unfamiliarity, was long ago put to better use in a wonderful blog by a mother of a child with diabetes.  The other title I entertained, “the D word,” was meant to allude to how I’d never spell out the full word when I wrote about diabetes in my journal, but it was also already claimed by a community of documentary filmmakers.  (Go figure).

Later on I became very grateful these names were already taken.  After a while I realized they described where I had been, not where I wanted to be.  They embodied the challenges I faced, not the capabilities I had since discovered. 

What this website stands for, beginning with its title, is the empowerment of people living with diabetes.  I hope it serves as a positive way of focusing on what we can do to counteract all the limitations put on us by others and by ourselves.

Like diabetes management, “BS in Check” isn’t just about meds and doctors and treatment plans—it’s about keeping your mentality in line as well.  I’ve found mindset is what guides health, especially with a condition where so much is determined by everyday choices. 

After well over a decade of hiding, denying, lying, and half-trying, I learned that believing in your abilities and the possibilities of your future make all the difference.  It is easy--perhaps even inevitable--to get worn down by the relentless strain of chronic conditions so that you begin to focus more on the obstacles than your own power in controlling them.  But thriving is about keeping your Blood Sugar, as well as your Bull Shit, in check.*

*please excuse the use of expletives and near-dirty words.  I don't want to offend anyone, but it's going to happen here.

The Beginning: A Rallying Cry

Welcome!

It comes as no surprise that I’ve been struggling for months with how to start.  But there is a common sentiment regarding talking about important secrets that goes: it is not so important how you say it, as long as you say it.  So in other words, spit it out.  Don’t let questions over how to approach and frame the story prevent you from telling it. 

Here goes.

There are many reasons why I wanted to start this website.  Some of them entirely self-serving (practicing telling the story of diabetes and discovering my own story), some of them silly (Money! Fame! Blogging makes you super rich, right?), and some of them eagerly if vaguely benevolent (hoping somehow in some way this helps someone). 

But above all else, the core principle is this:  the diabetes narrative deserves some positivity. 

No matter the medium or the speaker, the dominant message about diabetes is ominous.  Diabetes appears to go hand-in-hand with life limitations, serious threats to your health, and miserable routines.  While those things can play a part in experiences with diabetes, that perception doesn’t do justice to the disease or the people who live with it. 

People with diabetes are incredibly strong and their tenacity should be celebrated.  Diabetes is a serious condition, but it is within everyone’s grasp to make changes that will help them improve.  If we really focus on our health instead of what’s holding us back or what could happen, we can live just as happily, if not more, as anyone else. 

There’s something missing in all the pamphlets and pharmaceutical commercials and doctors’ visits and materials about diabetes.  Maybe it’s in there, but the font size just isn’t big enough:

WE CAN DO THIS.

More on that to come.