What Brings Me Down: None and All of It

Most days if someone would ask me how I feel about diabetes, I would say it’s fine, no big deal.  Everyone is dealing with something, and diabetes happens to be where my goat is tied.

But some days it is too much.  The nonstop worry, guilt, stress, fear, and questioning overwhelm you.  You need a break that will never come.  You feel inadequate and unable to master this disease and thus your own fate.  You wish you were cursed with anything else but this.

A few years ago I sat in on a workshop about de-escalation and learned one of the basics was to acknowledge what the person in crisis was feeling.  It makes total sense.

Unfortunately as diabetics we deny ourselves this all the time—the acknowledgement that it is a lot to handle.  It isn’t cancer, it isn’t a terminal diagnosis, and it’s manageable.  We want to minimize the stress and fretting of our loved ones, so we carry on and try to normalize it.  At least I do.  I don’t want to bring anyone down, as if my vulnerability is their burden.

But living with this condition is significant.  It’s always there.  It dominates my thoughts around every meal and every workout and every drive and every date and every time out with friends. 

It’s hard, and we should give each other that much.  Which is why I really appreciate Thursday’s topic and posts relating to Mental Health Month and coping.

On the worst days, some of the things that bring me down are thoughts (if irrational) like this:

•         Having to deal with this when none of my friends do is the worst thing in the entire world
•        I am alone and no one understands
•        I am failing at BS control, and the resulting complications and/or death will be my fault
•         Diabetes has made me an inferior person

Dark stuff, right?  What I do to conquer these feelings and move on is at first acknowledge them.  I accept that it is okay to feel them and confirm that I am facing a challenging situation.  In other words, I revel in self-pity.

After that phase has concluded I try to do things that make me happy and calm.  This can be very hard to do at times because I’m having so much fun with the self-pity phase, but I know it works every time so it’s just a matter of getting out and doing things such as:

•         Taking a walk

Walks are nice.  Always.

•         Playing with my cat (or any animal that is readily available)

Someone super hates her Christmas accessories, which only serves to make it more endearing.

•         Making a delicious but somewhat healthy meal that makes me feel like I’m back on track

Curry would be super healthy but for the can of coconut cream that has basically a week's worth of calories. YUM!

•         Seeing family or talking with friends

Bonus: hanging with loved ones AND a furry animal!

•         Writing or journaling about what’s going on
•     Going online to listen, learn from, and share with the wonderful diabetes community there

Diabetes won't give you a break, but you certainly deserve one.  Go for it!!

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 Healthcare Experience: A Clash of Experts

Throughout my time with diabetes visits to the doctor have undeniably improved.  As a teen I used to cry and scream in the car at my mother after every consult (God bless all the parents of diabetics).  I committed all the biggest sins: made up my numbers, told any lie to appease my doctor, and pretended to commit to new plans without the slightest consideration. 

I feel like I’m in a good place now: I like my doctor, feel like I can be honest with him, and sometimes actually don’t want to wait for three months until the next visit.  Crazy, I know.  After 15 years I finally established a doctor/patient relationship that worked like it was supposed to: as a team.  The post-doc dirty martini tradition I started a couple years ago is a reward, sometimes a celebration, and rarely a somber distraction.

But there are still troubling issues I can’t figure out.

The last doctor visit was one of the best I’ve ever had.  He used words like “tight control” and said my A1C didn’t need to be lower—probably the closest I’ve ever come to a compliment from a doc.

More prevalent though were words like “safety.”    The theme of this visit seemed to be lows even though they were far outnumbered by highs, and I hadn’t had more than a few or any severe ones.  My A1C had been steady for a year, and the last result had actually gone up a smidge.  But the conversation and according medication adjustments hinged on safety and lows, in my belief, because the student/resident doctor’s “focus du jour” was on lows. (She had asked me with incredulity during our one-on-one consult if I drove.  I was, and still am, irked by that question.  Does diabetes mean you’re supposed to be relegated to taking public transit and cabs?)

The most lasting effect of this visit was an increased paranoia of going low, “cheating” more, and higher BS.

In conjunction with the talk about lows I was also gently pushed to consider a pump and/or CGM and set up a meeting with a diabetes educator to learn more about the products available, which I balked at but pretended to consider in the future, kicking the can down the road.  I am profoundly averse to change; I refuse to use the bank drive thru, still use a typewriter on occasion, and was a late adopter of smartphones. 

Both of these recommendations—the medication adjustment to err on the side of highs instead of lows, and the consideration of switching from MDI/insulin pens to a pump—are absolutely legitimate.  One hundred percent.  I just didn’t know if they were right for me.  I kept asking myself: if things are going good, why do we have to change anything?  I didn't have a problem with using pens or having the occasional low because I over-corrected from a high; why did they?

On the other hand, what if I was just being stubborn?  I challenged my reluctance to embrace what I knew could be a very positive change.  I likened the switch from multiple daily injections to a pump as the same hesitation I felt when going from pills to insulin—a change I wished I’d made sooner.  I have an inkling I’ll feel the same about a pump when I try it.  I’m trying to figure out what’s right for me and if it’s personal preference or fear that holds me back from switching.

That’s the hard place I can’t seem to escape in the doctor/patient relationship: there are two experts in the room with often differing views on the best course of treatment.  The doctor has formal education and vast knowledge on the disease, and you have an intimate understanding of your body and its day-to-day management.  It’s good for one to challenge the other with ideas, but hopefully the ending place is not so far apart.  

In the end, patients should leave with plans that are actionable and leave them empowered.  We should feel we have the agency to chew, and not just swallow, our doctor’s orders.

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.