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.

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.