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

The Vacuum Epiphany

For 30 years of my life I’ve loathed vacuuming. 

Technically I shouldn’t count the years before I could walk, talk, or you know, understand the concept of vacuuming, but the hatred I harbored in the comprehending years more than made up for it. 

I don’t know what it was that spawned so much disdain.  ( I’m a clean person, I swear.)  Maybe it started because it was one of my almost daily chores as a child, though that certainly didn’t ruin dishwashing for me.  Maybe it was the years I spent as a waitress at a local restaurant where it took at least 15 minutes to vacuum up the fries and chew spittle at night.  For most of my life I’ve attributed my hatred of vacuuming to an inherent aversion to either floor chores or physical exercise itself.

So I avoided it.  At the last townhouse I lived with a roommate—hold your dinners people if you vulnerable to queasiness—I vacuumed probably three times in two years.  It disgusted to me sit on the floor, look at it, or even think about it, but I wouldn’t bother to vacuum. 

For one, it seemed pointless.  It never seemed to get clean, and like all the other vacuums in my life, I believed the one available at the time was more likely to start on fire than suck up the dirt and grossness.

At my new apartment though where I was finally reunited with my cat I realized I had to do the unthinkable: buy, and potentially use, a vacuum.  The cat fur was rolling through the place like tumbleweeds in the Wild West before the end of the first week.

So I bought a vacuum.  And realized everything I’d believed about vacuuming in the previous decades had been wrong.

I found I enjoyed it.

It was easy, and best of all, the results were clear.  The carpet looked as if it’d been fluffed, but best of all I could see all it had picked up.  At work I thought about it, even looked forward to it.

And realized that all along what I had hated wasn’t the practice or concept of it.  The equipment I had been using was consistently ineffective; choosing the right tool made all the difference.

I should’ve known that, because it’s clear in diabetes care that choice in supplies matters significantly.  I feel I’ve never recovered from my insurance company’s decision to stop carrying a small portable meter and rarely take the new one with me as a result.  The #AccessMatters / #MyPumpMyChoice debate this spring hit home because even though I don’t use a pump, I completely understand how access to the right tools for each individual determines attitude and practice towards proper care.

It’s not just a piece of equipment.  It’s an experience, reinforcement or recreation of a mindset.  

Tools, it seems, change everything.

The Other Half of Diabetes: You Know, the Mental One

It’s not possible to measure the effect diabetes has had on me emotionally.

There’s the endless tasks of a day-to-day routine.  There’s the guilt over highs, panic over lows, and frustration over the numbers that don’t make any sense.  There’s the worrying about how much my loved ones worry about me (meta-worrying? J).  There’s the bad days where everything seems hopeless.

Mental health doesn’t get enough attention in diabetes management.  They loudly broadcast the possible side effects on your kidneys, eyes, heart—everything but your brain.  Nobody in the doctor’s office (or elsewhere) encourages you to pay the same attention to your mental health as they do your numbers.

But treating the emotional/psychological side of living with a chronic disease is just as important as keeping the numbers under control.  People with diabetes can have all the information and resources available to them, but it won’t help unless they’re willing to use them.  A doctor can prescribe medications all day, but they won’t do anything if the patient doesn’t take them, and the patient won’t take them unless they believe it matters. 

When I my A1Cs used to be in the 10s, 11s, 12s, my doctor used to always conclude that I needed to visit the diabetes educator again, as if education and not attitude was the problem.  As if I needed to see the plastic pork chop again to understand the proportion size for meat.  I knew; I just didn’t care.

Attitude is everything.  So is hope.

As a wise blogger wrote today for #DBlogWeek (I’m sorry I can’t remember who it was, I read more than a few today J), it could be worse.  It’s true.  We’re alive today, and our blessings only increase from there.

I recently started a new mental exercise, fill in the blanks style: 

_______ today as if _______ was a gift

Because it is. 

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.

Thanksgiving Every Day

This Thanksgiving my sister-in-law attempted to nudge a couple of the children into reflection and gratitude as we sat around the supper table.

"What are you thankful for this Thanksgiving?" - sister-in-law
"My tractor trophy." - nephew

And of course my other four-year-old nephew echoed this sentiment despite that fact he had no such trophy and was too interested in rides during the local fair to even compete in the pedal tractor race.  It was cute.

The day was by no means perfect--work that morning had sadly prevented me from doing my turkey trot tradition, and I started the binge early in the day with a face-sized jelly donut-- I was repeatedly reminded we were so blessed to have everyone there for supper, even as the young children on either side of me used my cream-colored sweater as a napkin. 

The next day I met a friend from out of town for lunch, a continuation of the Thanksgiving week eating marathon.  We got on the topic of how she was feeling lately and her mindset toward a chronic health condition that causes pain and progressively affects her lifestyle.  With much more sagacity than I can portray she said she is realistic about the chances for a cure in her lifetime, has prepared for what happens if she has to stop working earlier than expected, and has planned for her long-term care as she ages.

I wasn't sure how to respond right away.  I was overwhelmed by admiration for the courage of her honesty and the pragmatism of her approach.  At that moment and for many afterwards I considered sharing my struggle with diabetes, but as usual something held me back.  Instead, as a true Midwesterner, I looked for something comforting to say and came up with the one of the blessings I've found in living with a chronic health condition: that unlike most other people you are given a real reason to take better care of yourself and pay attention to your health; and although it comes with a host of challenges you learn to take it one day at a time and to appreciate everything you have.  Only when something is threatened do we ever seem to really appreciate it, and in some ways people living with chronic disease are more aware and able to experience deeper gratitude for life because they are confronted with challenges to it.  "Yes", my friend replied, "my husband and I talk about how lucky we are all the time."

I'm not saying it's easy, or even possible, to stay in a positive mindset all the time.  With chronic conditions like diabetes there's always new challenges and the build-up of frustrations over a complicated disease that feels more high maintenance and fickle than a needy boy/girlfriend.  But reflecting on our blessings is a good exercise to bring us out of the depths we can find ourselves in. 

It can't be Thanksgiving every day. (Which is a good thing, because pants with zippers would soon be out of the question).  But the essence of it--spending time with people we love and reflecting on what we're grateful for--need not be confined to the holidays.

On the Malice of Bugs

When I took a walk today tiny gnats swarmed in clouds around me.  They stayed with me for a good clip of my route as if magnetized to my face.  
 

Annoyed, I tried my best to ignore them, but I soon got amply frustrated.  It seemed as if they were trying to ruin the outing, holding me back as well as they could with their muted buzzing and dangerously close proximity to my eyes.  I imagined they were deriving amusement from it all.

Which, of course, is ridiculous. 

Though my knowledge of biology is shaky, I doubt the the bugs were actively attempting to foil my walk. 

I thought on the way home that I needed a mental reset; I was thinking of things in an unhealthy way.  Not only were the bugs not “out to get me,” but wasn’t it just plausible that the converse was true, that the bugs were swarming me because they wanted to join in and accompany me on my walk?

Feeling beaten down is always a choice.  Stress and frustrations from dealing with diabetes easily brings us to a place where negativity seems the most real, but we have to clean our lenses to see things for what they are.

Remembering to Look Up

With the threat of snow safely past us, it’s safe to say spring has reached Minnesota.  And it’s absolutely glorious.

Like many of my neighbors who seem similarly euphoric to be outside without having to wear a coat, I’ve been taking as many walks as possible.  In an effort to shake things up yesterday I went rollerblading for the first time of the season. 

I love rollerblading, but I’m not good at it.  I am graceless, my balance is non-existent, and when falling I tend to catch myself with my face.  I can only rollerblade on newer, smooth paved trails or there’s no hope of staying upright.  Despite the danger to my limbs, it’s a great workout and it’s pretty fun.

As I rolled along yesterday I enjoyed feeling the breeze, the tranquility of being removed from the noise of traffic or the TV, and the pleasant muscle exertion that made me proud of working out without the panic-related doubt during intense workouts that makes you feel like you may pass out or die at any second. 

But after going along for about twenty minutes, I realized I hadn’t glanced up more than a few times to take in my surroundings.  In fear of tripping over a stick, a crack in the asphalt, or Heaven forbid, a snake, my due diligence was robbing me of enjoying the natural beauty of the wetlands and woods surrounding the trail.  Was it necessary to stay fixated on the ground to prevent myself from ending up on it?

I continually struggle with the same question regarding managing diabetes, and I have yet to answer it.  What is the right balance between living a healthy life and enjoying it? 

More and more I am realizing that the two approaches must be integrated—that you have to discover healthy ways of eating, exercising, and thinking about things in ways that appeal to you.  When I used to separate the two and switch back and forth between the two--controlling diabetes or living a “normal” life—I never did well with either one.  Guilt or doomsday feelings of long-term effects always follow you when you live like a non-diabetic, and when you do try to pay attention to it you feel cheated of the “normal” life you still envision as part of your world. 

I’ve been working to find more ways to live healthy that not only don’t feel like punishment but are actually enjoyable.  I signed up for a couple 5ks to keep me motivated to jog.  I’ve experimented with different salad toppings and dressings that effectively distract me from my constant craving for a cheeseburger.  I joined a new gym (that I hopefully will actually use ;) ). 

I doubt, however, that the search for true balance is over.  It seems even when I am keeping tight control of my B.S. the energy required to do so shifts my focus too far one way and I don’t focus on enjoying every moment, or I start to envision false limitations. 

For now I’ve decided to take the same approach as I did when rollerblading: scan the ground ahead for potential pitfalls, but keep my head up and enjoy the view.