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Posts tagged ‘guilt’

One, Stupid High.

On any average day, my glucose meter results are just mine.

… mostly.  I worry about lows while I’m driving my daughter or traveling alone, but while a low might be witnessed by someone else, it’s my body that goes through the experience.  (Not to minimize the experience of watching diabetes from a distance; that’s a whole other post.)  The long-term influence of diabetes is still a process-in-progress, but on the whole, the individual meter results are mine to mitigate.

Right now, though, every number on the meter isn’t mine and only mine.  These days, every high and low and all the bits in between belong to me and the baby I’m creating.

No pressure.

I take this job very seriously.  It’s easier to play by every, single rule during pregnancy because there’s a definitive start and end to this process.  40 weeks marks the duration of an average pregnancy, which means that I need to be on the ball, knocking it out of the park, and other sports analogies for that timeframe.  It’s important to plan ahead, if you can, and it’s important to keep at it once the baby is born, but diabetes is truly only shared in tandem for 40 weeks.

Which is why one stupid high is enough to send me into a spiral of panic and wtfuckery.

Yesterday, things got stupid for a few hours and I saw a number on my meter that made the string of curse words come easily.  A pump site that needed to be changed and a Dexcom sensor that was repeatedly throwing wonky numbers and a pregnancy that is moving into the “upped insulin resistance” phase didn’t help matters.  It took an injection of insulin and hours of frustration (because my body thought, perhaps, I had injected water instead) for the number to move in the right direction.  The anger was intense.  As was the guilt.

I know that days of highs, not hours, adversely influence a developing baby, but holy shit.  This wasn’t just MY HIGH but it was OUR HIGH, and that left me feeling helpless.  The best laid plains of NOD mice and women still had me higher than I wanted to be and higher than I felt safe being.  I can deal with  blood sugar fluctuations as a soloist, but bringing a baby into the mix makes me want to make my standard deviation less … deviant.

Eventually, the numbers started falling, and I cried – a wimpy, gross cry – when I saw the 74 mg/dL on my meter because it meant that I was back in the game.  23 weeks left to go, give or take, before diabetes is “all mine” again.

(Note: Crying is not limited to blood sugars.  I also cried when the mailman asked me to sign for a package.  Hormones are weird.)  

Diabetes Food Lies.

So many rules were slapped into place immediately upon diagnosis, with diabetes feeling like a disease of “don’ts.”  Don’t eat cookies, don’t forget to measure your food, don’t leave the house without your meter or insulin or glucose tabs, don’t go to bed without checking your blood sugar, don’t eat too much sugar-free candy or else you will take up temporary yet violent residence in the bathroom.

But some of the don’ts were more subtle:  like “don’t allow the disease that’s built around obsessing about food to let you become obsessed with food.”

My mom used to hide packages of cookies in her closet, and I’d wait until she was in the shower to steal into her walk-in and grab cookies by the fistful.  I’d eat until my stomach ached and I didn’t take an injection to cover my indulgences, and to this day, I still grapple with the “why” of my actions.  I know I am not the only kid who did this.

Guilt and food went hand-in-hand right away for me, as a kid with diabetes.  I felt guilty about eating those closeted cookies, and even more guilty about lying to my mother about my actions.  And yet I did it anyway.  I have a very clear memory of hiding a carton of ice cream underneath the couch upon hearing my father’s approaching footsteps, afraid not of him telling me I couldn’t eat it, but being angry that I didn’t care enough to take insulin to cover it.  I have no idea why I never bolused for those furtive snacks; it was as if taking insulin for them forced me to acknowledge that I shouldn’t have eaten it in the first place, as though the bolus itself made the action real, instead of the resulting high blood sugar.  Or, you know, chewing and swallowing.

I never wanted to have that high blood sugar.  I just didn’t want to have the restrictions, and my way of rebelling against them seemed rooted in pretending I didn’t have the rules of diabetes to own up to.  Rebelling was so subtle, and so easy, for me.

Now, as an adult, I still find my feelings about food to be complicated.  I feel very lucky that I have never dealt with an eating disorder and I always accepted, even if I didn’t always like, the shape and layout of my physical body, but diabetes has a way of making me view food through a lens that my non-diabetic friends don’t share.  My mind knew that numbers on the scale or the size tab on the back of my pants didn’t matter as much as number on my meter, but still, it is always a struggle to remind myself of that fact.

But the guilt that comes with my relationship with food, as a person living with type 1 diabetes, is always on my plate.

I live in my own house with my husband and my daughter, and I still have that urge to hide my food.  Last night, I had an uncomfortable low blood sugar reaction that I decided to use the candy conversation hearts in the deli drawer of my fridge to treat, instead of glucose tabs, and as the deli drawer creaked as it slid open, I wondered if my husband thought I was just “sneaking candy.”  (For the record, Chris hasn’t ever, ever made me feel guilty or judged for what I’m eating.  The guilt isn’t borne from the reaction of others, but from my own projected perceptions.  It’s a weird head game.)  Some of the thoughts remain, but my mini-binges stopped long ago, once the don’ts of my mid-1980’s diagnosis of type 1 diabetes gave way to today’s modern insulins, meters, and mindsets.

A few days ago, a parent wrote to me and asked me why her child with type 1 diabetes would lie about eating certain foods.  And I had no idea what to say, because I still don’t know why I did it myself, or why I still sometimes have the urge to do it.  All I know is that even with a supportive family, friends who don’t judge, access to like-pancreased people, and a mindset dominated by confidence in my diabetes management, I struggle to explain what made me binge-eat those cookies, or binge-lie about doing it.  And I don’t know why, decades later, it’s still hard to say out loud.

[This week is National Eating Disorders Awareness weekWhile this post is not about an eating disorder, it is about the disordered mindset that can come along as part of a disease that is anchored in food.  If you’ve ever felt guilty about your food choices or perceptions, you are not alone.]

Looking Back: Santabetes.

‘Tis the season for giving Santa too much of the credit.  This morning, I’m looking back at a post from 2010 about my mental Santabetes.

*   *   *

[Note:  This post contains spoilers.  If  you believe happily in the story of Santa, skip down to where it says “Diabetes is like Santa Claus.”]

My husband and I share a philosophy on Santa Claus.

Santa gets too much credit.  Why should Santa get all the glory for the gifts that show up underneath the Christmas tree on Christmas morning?  Mom and Dad work their tails off to provide a fun and comfortable life for our child, and to have the fun thunder (funder?) stolen by Santa Claus is unfair.  “Thank you, Santa, for the Barbie and the Rockers van!”  I shouted as a kid, not realizing that Mom and Dad put in some extra hours (and spent half the night assembling the stupid thing) to get that Rocker Van under our Christmas tree.

So BSparl will be fed the Santa story, but she’ll also understand that her Christmas gifts come mostly from her parents, and not from a fictional cookie thief who shimmies down the chimney.  Santa doesn’t work as hard as we do, so he shouldn’t get all the credit.

Diabetes is like Santa Claus.  (Welcome back!)  Only in this case, it SHOULD be the one given most of the credit for certain things.  And I shouldn’t give myself so much of the blame and guilt.  I have a tendency to look at a blood sugar reading and instantly blame myself for it.

“Oh, 236 mg/dl.  Great.  What did I do?”  And then I start musing about what I may have eaten or if I under-bolused.  Same guilt for a low.  Same reaction for any number that may be deemed “bad.”

Only it’s not my fault.  Even if I did overeat or over-bolus.  It’s the fault of diabetes.  I can’t assume all the blame for the effects of this disease because there is plenty that is out of my control.  I can count carbs and test often and make use of all the technology and medical advancements available to me, but when things go awry, I can’t sit around and blame myself.

Last week, I was talking to some parents about “good” and “bad” diabetes numbers.  And I hate nothing more than assigning such adjectives to a moving target like a blood sugar number.  236 mg/dl isn’t “bad.”  It’s out of range.  100 mg/dl isn’t “good,” but just in range.

Holidays and diabetes - Santabetes?

It took me a very, very long time to not see my meter results as something I should feel badly about.  Growing up with diabetes, everything was tagged with either “good” or “bad.”  But I can’t carry that kind of guilt.  By blaming diabetes for these fluctuations, I’m able to remove myself from the guilt cycle, and move on faster from an out of range number.   Diabetes is to blame for my body’s inability to maintain a consistent blood sugar.  This kind of “Santabetes” viewpoint is not an excuse for me to slack off, but the detachment makes it easier to bounce back from a tougher diabetes day.  I can’t blame myself for everything – that’s not productive or mentally healthy.  My job is to do my absolute best to keep things in range with the help of the tools and education I have at my disposal.

And, like Santa Claus, diabetes isn’t going to get all the credit for the good stuff, too.  When my A1C was at the Nice Healthy Baby Range, I didn’t give the nod to diabetes for being easy on me.  It was the result of my hard work against a pain in the ass disease.  Go ahead and take all the credit for the tough stuff, Diabetes.  I’m not owning that part of it.  I’m just going to keep looking ahead and taking one day of diabetes at a time.

… and mentally prepare myself for the Christmases to come, when I’ll be up all night assembling whatever goofy gift is on my daughter’s list.  😉

Complicated.

A few weeks ago, I was diagnosed with macular edema.

It’s a complication you can’t see, one that I can’t see until I can’t see.  Sophisticated computer equipment and  camera technology have afforded me the opportunity to find out early, giving me the chance to track this issue closely and opt for aggressive treatment options (laser surgery, medicated eye drops, intra-ocular steroid injections) when the time comes.  I feel raw and vulnerable, but I have information.  I have access to excellent doctors and specialists.  I have options.

I also have a bit of a stomach ache because when I asked, “How can I keep this from becoming more of an issue, going forward?” the response was, “Keep your glucose control as close to ‘normal’ as possible.”

It’s the “as possible” bit that throws me.

It could have been the birthday cake?

It could have been the cupcakes I snuck, and lied about, as a kid?

It could have been  NPH and Regular and hormones and the “brittle diabetes” moniker that they wrote in marker on my chart at the hospital made “normal” a definition built on shifting sand?

It could have been the pregnancy hormones, or the period of diabetes burnout I experienced after my daughter was born?

It could have been anything.  Everything.  It could have been the years of struggling.  It could have been the quick transition to tight control.  It could have been bad genes, or good genes, or tight jeans.  It could have been everything I did, or didn’t do.

The truth is, it was type 1 diabetes. 

We don’t talk about complications often in this community, and I hope that’s because many people aren’t dealing with them.  Discussions about “what could happen” are often left in those quotation marks, as if that holds the threat captive.

But after decades with type 1 diabetes, complications may happen.  Retinopathy, kidney issues, depression … the list is long and a good attitude, a determined mind, and even good control don’t keep these issues entirely at bay.  I’ve had my share of issues with my eyes.  In the past, I’ve seen some cotton wool spots in my eyes.  And during the course of my pregnancy, retinopathy near the macula dictated a c-section delivery for my daughter.  And now, this diagnosis of macular edema in my right eye.

This doesn’t mean I’ve failed.

I am sharing this because it’s real life with diabetes.  This is what’s happening, and even though I don’t want people thinking that diabetes complications are necessarily a guarantee, they also aren’t a mark of failure.  I work hard to manage this disease.  I will keep trying, even though I know there will me more radar blips, and more moments that cause momentary tears but then renewed determination.  There’s so much personal responsibility, so many moments of, “Well, you have the tools to manage this disease, so why aren’t you hitting the mark?” Diabetes is unique, in that way, with complications often viewed as a result of the patient not working hard enough, when in fact, they are the result of diabetes.

By writing this, I’m opening myself up to people who want to point fingers and to say, “Well, it won’t be my kid” or “It won’t be me.”  I can understand that.  I didn’t think it would be me.  I hope it’s not you.  But it may be you, and in the event that it is, I want you to know that you aren’t alone.  Diabetes complications need to be talked about, because the guilt that comes with their diagnosis can be crippling, melting away the value of our efforts.  It’s easy to become overwhelmed when diabetes seems to be the leading cause of leading causes.  For me, the diagnosis of macular edema made me want to wallow in self-pity for a while and hate diabetes, and I did that for a few days.  I cried a little.  I combed through internet search returns.  I hugged my husband and my daughter, burying my face in the chaos of her pigtails and inhaling the scent of unconditional love (and baby shampoo).  I called my mom.  I talked with a few friends.

And then I moved on, because if I stay in that pool of guilt, I’ll drown.

Guilt is a misplaced emotion when it comes to diabetes, and to related complications.  It’s not my fault that I have diabetes.  It’s not my fault that I have eye complications.  But it is my job to take care of these issues, and to work through the moments where I want to give up.  The guilt gnaws but I can’t let it take too deep of a bite; I owe myself more than that.  The emotional ebb and flow of diabetes has more impact on my happiness than the actual fluctuations of my blood sugars, so I won’t be beating myself up about this.  But, as I write some of this, I’m alternating between hitting keys and wiping tears angrily off my face, which pisses me off because even when I make a conscious decision to block feeling bad and guilty about it, I’m still unnerved.  I want to be tough, but I’m not as good at that as I’d like to be.  I want to be strong for my family, but sometimes I need them to be strong for me, in the moments when I’m buckling a little. (Which is why I need to thank Scott, Melissa, Kelly, and Jeff for being sources of information and good hugs last week as I was finding my footing with this and away from home.  My family isn’t limited to marriage or blood, and I’m thankful for that.)

So they checked the box, the one that says, “Complicated.”  But I knew that, far before it was seen in my eyes.  Life with diabetes is complicated.  Life without it is pretty damn complicated, all on its own.  But it’s mine, this life, and it’s still good.  When I come to the end of the very last day, I want to feel happy.  That’s more my goal than an A1C number ever was, or ever will be.

Life moves forward, complicated as it may be.

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