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Posts from the ‘Diabetes and Emotions’ Category

To A Crisp.

The folks at Diabetes Daily have cobbled together a day to discuss diabetes social media burnout.  (Yes, ironic to dedicate a day of online discussion about diabetes social media burnout …) but the topic is real and something that we have all encountered over the years, so it bears discussion.

Only I’m not talking about it today.

Why?  Because I don’t really feel up to it.

The crap that I have to do to stay on top of diabetes is non-negotiable.  Checking blood sugars, making careful food choices, exercising, blah, blah, blaaaaah.  That stuff is part of the repertoire I cannot ignore without putting my health at significant risk.

But the blogging partTwitterInstagram?  Answering emails?  That’s not required for diabetes management.  That’s auxiliary.  And mostly positive, in my experiences.  The Internet isn’t always the cuddliest place, but in the diabetes community there is a welcomed trend of positive interactions and real, substantial relationships with people touched by diabetes coming together to share experiences, ideas, and to help someone carry the parts of diabetes that get a little heavy at times.

But these connections are not required.  They are a choice you can make, just like opening your computer or clicking away on your smartphone.  More choices follow from there, steeped in personal preferences:  Download the Facebook app on your phone?  Only use Twitter during #dsma?  Take weekends off from social media?  Engage with trolls?  Engage in supportive interactions and fruitful friendships?  Give a shit about cruel things that people might say?  Ignore/block/delete unwanted commentary?  Seek out local, in-person meet-ups?  Have long text message threads with friends you’ve made in the DOC?  Dedicate your personal and professional life to diabetes efforts?

… or how about take a breath?  Enjoy a combination of what’s available.  Relax a little bit.  Enjoy social media as an option, not as a requirement.  The Diabetes Online Community is a tool in our diabetes management toolbox.  And just like with any toolbox, you don’t always need the same one.  (Avoid trying to use a flat head when you need a Phillips.  Don’t use a hammer when you need a steamroller.  Learn the difference between a level and a wrench.  Never substitute playdough for a nail.  Don’t chew on a socketwrench.  Et cetera.)

For more on diabetes burnout with a side of social media, check out these posts:

Slightly Charred

Show Me Your Pump … Or Not

Slackadaisical

Talking About Diabetes Burnout

Happy Birthday, Dr. Seuss!

 

 

Slightly Charred.

Diabetes burnout and social media burnout have a tendency to go hand-in-hand for me because it becomes tiresome to document my failures.

“No, the failures of your pancreas,” said a friend.

Nope.  The failures of me, pancreas and all.  I can’t separate the two.  Diabetes challenges me emotionally and physically because I am lucky enough to deal with a disease that offers me a fair amount of control … which translates into a predictable to do list.  As much as I try to reduce my level of responsibility when it comes to this crap, I have to own my role in this disease.  It’s not something I could have prevented, but it is something I have to deal with.  I look at other health issues in my life and realize how little influence I have over them.  And then I look at diabetes and I’m forced to acknowledge that this disease is a confluence of intention and reaction.

Writing about diabetes has become hard some days.  It used to feel good to write about a low blood sugar and get that story out there because it felt like a purging of bad feelings, and the flood of “me, too!” moments made the edges of frustration softer.  Now there are moments when sharing feels pointless; no one needs a reminder of why my disease can be a pain in the ass … least of all me.

I have good intentions.  I intend to take care of myself, and despite the variables that influence diabetes outcomes, I make efforts.  (I exercise.  I eat well.  I don’t smoke.  I am proactive with my medical appointments.  I check blood sugars and take insulin.  I list things that seem smug, like the aforementioned list.)  But diabetes is still diabetes, and I am still reacting to the disease a fair amount of the time.  Reacting to a low (eat something!) or reacting to a high (bolus!) or reacting to a skin irritation (Toughpad me) or reacting to frustrations related to the diagnosis of complications (eyeball fuckery) or reacting to the underlying theme of always hoping for the best and yet being pragmatically prepared for the worst.

Community helps me process this stuff.

Community is a good way for me to manage my emotional health as it relates to diabetes (directly).  Connecting with peers helps me find my footing in moments when I feel like diabetes is dominating.  But that sounds so formal, like secondary headline on a journal article.  The diabetes online community and all this blogging stuff has given me so much in terms of emotional health success.  So what am I doing, writing about social media burnout?  I actually feel stupid saying that there can be burnout from social media, even though I know there can be.  It just feels like the most first world issue there ever was.  Almost like having too many pairs of sturdy shoes – “I simply cannot manage all of the opportunities that are available to me!  Woe is my woe-crammed self.”

So am I burnt out?  Or just slightly charred?  And do I need someone’s permission to voice this issue?  (No.)

Sometimes I question my decision to (over)share so much of my diabetes process in a public setting.  Putting information out to the Internet invites strangers to comment and critique, which is productive when the discussions are empowering and awful when the discussions are cruel.  I’ve had a lot of positive experiences overall via the Internet but it’s been a mixed bag at times.  Which I’m not surprised about – not everyone will like everything, or support everything, or spell everything correctly – but at the same time, it surprises me when I see people rip others apart for their shortcomings or vulnerabilities.  Watching people run commentary that’s hurtful detracts from the nice, mellow community vibe that I appreciate most.  Basically, sometime people (myself included) are dicks, and I hate when that happens.  It makes it harder to share openly and to support.  As the years go by, I want to share less because I want to protect my right to fuck up.  It’s a weird halfway, because the moments where I fuck up are the ones I need the most support during.

So what’s the point of this post?  Here you go:  On September 1st, the team at Diabetes Daily wanted to generate some discussion about social media burnout.  And I hope people talk, because discussions like these make our community stronger.  Or at least that’s the goal.

It’s not about curating a perfect online existence; it’s about living a real, healthy life even with the raw and ragged edges.

A Matter of Apologies.

“I was low.  I was frustrated because of the low blood sugar.  I’m sorry.”

“It’s okay,” and I can tell she means it by the look in her friendly, brown eyes.

I used to be very terrible at saying, “I’m sorry.”  I would hold on to frustration and anger in a way that was not good for me or anyone around me, making a grudge or the need to feel like I “won” the disagreement take precedence over a relationship.  I’d keep “I’m sorry” under my tongue because I didn’t want to admit that I’d done something that hurt someone’s feelings.  I felt embarrassed to admit my shortcomings.  It felt awkward and bad.

It took a long time for my head to figure out that my heart was better off if I let the sorry fly, but once I came to that realization, I tried to embrace as often as I could.  (I also had to work on the “does this interaction make me better or worse as a person?”  This is still a work in progress.)  Now I’m less terrible at saying, “I’m sorry,” and I feel better for it.

As much as I hate to admit it, my blood sugars are not only influenced by my emotions (stress, anyone?) but they influence my emotions, as well.  The way my numbers make me physically feel can cause me to act like a total crumb.  It’s another reason to be aware of what my blood sugars are, and if I enter the Crumb Zone, apologize for it.

I find myself apologizing to my daughter at times for entirely blood sugar related reasons.  Sometimes I snap because I’m taking yet another bolus to correct yet another high and my body is riddled with sugar and rage, and I will be far less than patient with my little one as a result.  Other times I raise my voice because I’m trying to treat a low blood sugar reaction and she’s at my elbow asking to [insert rogue request from active 5 year old here].  Losing my patience during the course of run-of-the-mill parenting is something I am not proud of, but losing my patience because diabetes is leaning on my parenting style is something I want my kid to understand as best she can, because I don’t want her ever thinking my seemingly random outbursts are tied to her in any way.

It’s a weird balance between feeling like I’m blaming diabetes for my actions and simply explaining my actions.  Am I in the Crumb Zone (or Mayor of Crumb City, if you’re nasty) because of diabetes?  Nope.  Diabetes doesn’t get credit or get blamed.  But sometimes this disease is part of the explanation, and I want my family to have a sense for how, and why, I’m wired a certain way.

There are moments when Birdy assumes my attitude problem is diabetes-rYes, this whole post was an excuse to use the Siah-in-a-banana picture again.elated when it’s not, and I’m forced to fess up.

“Are you in a bad mood because of a low blood sugar?” my daughter asks, pointedly.

“Not at the moment.  Right now, I’m in a bad mood because I just realized I left a banana in the car while I was on my trip last week.  And now I’m afraid to open the door and confront the banana stink.”

“It’s okay,” she says.  And then adds, “Ew.”

 

Running the Gamut of Emotions.

In my diabetes life, emotions are right up there with insulin and food as influencers of blood sugar management.  And I wish it wasn’t so, because stress and excitement are hard to “plan.”  (Replace those actual quotation marks with finger quotes, because they fit the bill a bit better.)  And the emotions that come up as a result of diabetes crap?  Holy shit, they are a circus all their own.

The emotions of diabetes are a thing for me, and one that I need to work to manage as fastidiously as I work on my numbers.  Which is why my Animas column this month is about that exact thing:

“Diabetes is more than the lab work results and pricking fingers, taking insulin, counting carbs.  That’s the to-do list we have to check every day, but it doesn’t even begin to touch the other side of life with a chronic illness, and that’s the headspace part.  Some of my academic friends call it the psychosocial part; I think of it as the emotional portion of managing my diabetes, and in my life, managing my headspace is as important as managing my blood sugars.

There’s a whole range of emotions connected to diabetes that I run though on any given day.”

For the full article, click over to my columns at Animas.  And for more on emotions and diabetes, you can basically read anything I’ve ever written here on SUM.  :)

Reboot.

Diabetes and I are not getting along these days.  Not even a little bit.

Funny how that shit happens.  You’re rolling along [insert lilting "do de doooo" tune here] and then BAM Dexcom graphs start to get weird and BAM other health concerns start issuing commands that dominate the conversation and BAM all of a sudden, my blood sugars are absolute garbage and I need to reboot my whole system.

So okay, fine.  I’ll reboot my system.  Only it’s having trouble rebooting because of a few hard-to-change-at-the-moment things.  Like a demanding travel schedule for work.  And some meds that are gaffing up my blood sugar numbers all on their own.  And my unparalleled ability to instantly be distracted.  These aren’t excuses, but they are reasons, and these reasons are keeping me from rebooting entirely.  Instead, I’m temporarily stuck in that spinning pinwheel of rainbow doom that my old laptop was stuck in, going around and around in an attempt to reboot but ends up being a “press the power button until the whole thing powers down” moment.

(Yes, I also cannot stop staring at that thing while it spins.  It pulls me in.  Siren song of Mac doom.)

I’m aware of a lot of my shortcomings, though, and I recognize that a full reboot isn’t going to help.  I am not a “change everything all at once” sort of diabetes repair woman.  I’m more of a “change one thing, then change something else” type, leaving me with a breadcrumb trail of good decisions that eventually brings me back to better blood sugar control.  It’s a mixed metaphor that has yet to involve Hansel (he’s so hot right now, so I should get on that), but in time, I can wiggle these glucose numbers back into a better groove.

This time, I know it’s my response time to data that needs the most attention.  I have to be checking my glucose more regularly (and not simply in the morning, before bed, and whenever the CGM needs to be calibrated) and responding to the data I collect ASAP.  (Calling it “data” helps keep me from feeling like those numbers are little pockets of judgement and self-worth assessments.)  High?  Correct it.  Low?  Don’t over-treat it.  In range?  Do a happy dance in the kitchen because hot damn.  But the bottom line is PAY ATTENTION.

Complaining about this crap helps, but working to fix the parts I’m complaining about helps more.  This was my whine.  Now it’s time to work.

 

Diabetes Blog Week: The Quiet Parts.

Feels weird, and slightly ironic, starting a blog post about the diabetes-related things I don’t share here on the diabetes blog I’ve written here on the open Internet about my personal experiences with the disease.  It’s been ten years of this – the idea that there’s crap I don’t talk about might seem like a big fat lie.

But there are plenty of things I have decided not to share, both in the realm of diabetes and in the regular flow of insulin-free life.  I’m an oddly private person, considering what I do professionally.  So what do I share, and what do I choose not to share, and why?

“You put it out there, so you’re inviting people to judge you.”
That’s true.  By putting our lives “out there,” we are giving people information to judge us, for better or for worse. Giving the specifics of my lab work results or my weight or my fasting blood sugar this morning provides people with a window into my health reality.  It lets people put me into a statistic, or a range, or an assumption.  Some people are comfortable with allowing that kind of access.  I have come to realize that I’m not that kind of person.  No, I won’t tell you my A1C, even if it’s stellar and in-range and covered in fucking glitter.  I work very hard to manage this disease, and I’ve come to realize that I’m not the kind of person who does well being judged for that specific number, especially when that judgment attempts to minimize my efforts.

Because (being totally honest), I cared very much about the critique for a few years.  There was a time when I posted about my A1C while preparing for pregnancy (it was higher than what my doctor’s recommended, and I was writing about my struggle in bringing it down to baby range), and the comments that came back about my number ranged in their tone and sentiment.  Invited, warranted, or not, I can handle critical commentary, but there is a fine line between “constructive criticism” and “cruelty.”  And once I stopped getting all twitchy about the unsupportive commentary (because it’s not all going to be supportive), I felt a lot better.  Getting older has made me care less about being judged and more comfortable and confident about my decisions, decisions like not sharing my personal lab data.  Or like decisions to write about diabetes online in the first place.

“Just because you give them a window doesn’t mean you have to give them a door.”
We are not obligated to share.  We chose to share.  I write this website, and will continue to write here, because of the connection to the diabetes community that sharing fosters.  I love that part of it.  It took me a long time to realize where my boundaries are, and to feel comfortable staying within them.

While I chronicled my pregnancy in a very detailed way, I didn’t share everything.  Before my daughter was even born, I decided to keep her name offline, and after sharing some of her baby stories, I decided to keep her offline, too.  And I share a lot of the silly things related to diabetes, and some of the complicated things, too, but there are thoughts I have about diabetes that are sometimes so terrifying and other times so fucking arrogant that I keep those in, too.  Diabetes is so personal and runs a pile of gamuts.  Sharing it all feels like too much, at times.  Sharing some, however, helps me deal with the emotional side of this chronic illness.

A window in our lives?  That sounds nice.  Opening the door and letting in everything, and everyone?  I can’t manage that kind of flow.  What if a bat flies into my living room?  Fuck bats.  So I’m sticking with the windows, with the screens firmly in place.

“So what kinds of stories will we never hear you tell?  And why won’t you tell them?”
I don’t share stories about my extended family without their permission.  I don’t post about where I live or where I work during the day.  I absolutely do not write about arguments with family.  I do not share things that make me sad while I’m going through them (but sometimes I will share once I’m on the other side of that kind of emotional upheaval, as is my comfort level).  This kind of paints life as though it is “perfect” and without struggle, but I think we all know that the stuff we read on the Internet is always written with specific bias and through a specific lens. (Though I do try to disclose my financial biases, and also, I will always like my kid more than I like your kid.  It’s a fact.  Unless you are my husband, in which case I like your kid as much as I like my kid, for obvious reasons.)

I won’t tell some of these stories because they sometimes hurt to go through, never mind the added pain of retelling them.  I won’t tell them because they are mine, and privacy is an often-underrated but essential part of a peaceful life.

What I will share are stories about how diabetes affects my life, and how it plays a part in shaping my experiences.  I will connect with others through these stories and those friendships will color my existence in a way that I am still understanding and always appreciating.  I will share in hopes that someone will feel less alone, just like I feel less alone every time I read a new blogger or find a new Twitter DOC connection or have an awkward interaction with someone in a bathroom.

Regardless of how much or how little you share, your voice is important, and our community flourishes as a result.

*   *   *

This is part of Diabetes Blog Week, where blog prompts help generate a series of posts by folks in the Diabetes Online Community.  Here’s today’s prompt:  “Many of us share lots of aspects of our diabetes lives online for the world to see.  What are some of the aspects of diabetes that you choose to keep private from the internet?  Or from your family and friends?  Why is it important to keep it to yourself?  (This is not an attempt to get you out of your comfort zone.  There is no need to elaborate or tell personal stories related to these aspects.  Simply let us know what kinds of stories we will never hear you tell, and why you won’t tell them.) (Thank you Scott E of Rolling in the D for this topic.)”

Diabetes Blog Week: I Can.

Decades ago, my body did whatever it did to reroute the purpose of my pancreas, and left me with a diagnosis of type 1 diabetes at the age of seven.

As a result, I can’t make insulin.

Diabetes was presented as a series of “You can’ts” to me, back in 1986.  You can’t eat that, you can’t do that, you can’t try that, you can’t be that.  It was an unsettling feeling, being a child and living by a series of perceived restrictions.  But not knowing any differently, I spent way too much time thinking that there were things I just could not do instead of recognizing and celebrating how capable my body remained.

It wasn’t that I didn’t make insulin.

It’s that I had to coax out the instinct to live beyond diabetes.

I had to relearn how to trust myself, which was a weird paradigm shift because I was used to not trusting my body.  (When your immune system unexpectedly turns on you, you might develop a trust issue or two.)  It’s a learning curve, even to this day.  I trust my body to run for miles and hold my daughter in one arm, grocery bags in the other, but there are hiccups thrown out by diabetes here and there.  Like last night, when my low alarm went off for an hour and a half because my blood sugar was cemented in the 50′s for that long and I had to put reason and restraint into practice by treating the low cautiously instead of devouring the contents of the fridge with reckless abandon.  I had to trust the food and trust myself to bring my blood sugar up enough but not too much, aiming for that balance without caving to frustration.

I don’t know how to achieve balance, but I do know how to remain in pursuit of it.  I’m still learning.  I’m always learning.  Diabetes is not a hole in me or the whole of me.  It’s a thing that requires thinging, and I’ll thing the hell out of it until my last breath.

But not at the cost of giving in to it.

I need to remember that I can do this.  I can conquer this.  I can design this and devour this and delight in this.

I can.  I fucking can.

*   *   *

This is part of Diabetes Blog Week, where blog prompts help generate a series of posts by folks in the Diabetes Online Community.  Here’s today’s prompt:  “In the UK, there was a diabetes blog theme of “I can…” that participants found wonderfully empowering. So lets kick things off this year by looking at the positive side of our lives with diabetes. What have you or your loved one accomplished, despite having diabetes, that you weren’t sure you could? Or what have you done that you’ve been particularly proud of? Or what good thing has diabetes brought into your life? (Thank you to the anonymous person who submitted this topic suggestion.)”

Click for the I Can – Monday 5/11 Link List.

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