You’re looking at the title of this blog post and thinking…”ugh, clickbait!”
I assure you that I’m not trying to present this as clickbait; in reality, I did recently say something extremely messed up about my diabetes.
In a dramatic outburst spurred by three days of frustratingly high blood sugars, I said to my parents, “I’m going to die of diabetes.“
Look…we all say things that we don’t mean sometimes. But when I said this, there was a teensy-weensy piece of me that really believed there was an ounce of truth in that statement. That’s how fed-up I was with my diabetes.
It’s because I was going through insulin like crazy in the first half of that week. I couldn’t figure out why my numbers were running so high and tried what seemed like everything to cope with it: eating low carb, running temp basal increases, doubling my mealtime insulin, staying as hydrated as possible, checking ketones…and I was still contending with high numbers. The longer I stayed above my high threshold on my CGM, the more I convinced myself I was doing damage to my body, and that was an incredibly awful feeling. So I made that horrid exclamation out of sheer exasperation and fear.
I was letting my diabetes win that day.
I was letting my diabetes control the narrative.
I was letting my diabetes make me think that I was doing everything wrong, when in reality I was trying like hell to do everything right.
And…I was letting myself down. That defeatist attitude is not how I approach life with diabetes.
But I said what I said, and I can’t take it back…but I absolutely can change my thinking so that when something like this happens again, and I’m just feeling incredibly burnt out from it all, I have a new thing to say that is far from messed up:
I’m going to LIVE WITH diabetes.
Not just live…I’m going to live well with diabetes.
August is just ’round the corner (!!!) and that…feeling is creeping up on me.
That uncomfortable feeling that’s intensified by hot and humid weather.
That annoying feeling that happens when my CGM sensors and insulin pods seem to fall off my body and wither in the summer heat – the adhesives are no match for the sun’s merciless rays.
That restless feeling that creeps up when it’s too damn muggy out for my daily afternoon walks…the walks I rely on to help regulate my blood sugars and my mental health.
That fed-up feeling that’s the result of me going outside for 15 minutes, hoping to get some fresh air, only for my blood sugar to drop rapidly thanks to the high temps.
That creeping feeling of needing some kind of relief: Relief from the hottest days of summer and from every facet of diabetes management becoming just a bit more complicated because of it.
And now that I’m acknowledging how much I’m craving relief, it honestly just sounds like I’m going through some genuine diabetes burnout.
It’s not surprising: This year’s been a wild one for me (and let’s face it, the world) in multiple ways. Overall, my stress and anxiety levels are up and my motivation to do everything that I “should” do to manage my blood sugar levels is way down. I’m very aware of what’s good about my diabetes management lately (such as my daily exercise routines) and what’s maybe not so good (my constant desire to snack on carbs and not measure them out and/or bolus for them).
I’m hopeful, though: Maybe as I continue to cope with my seesawing emotions and blood sugars, they’ll find a way to balance out on their own and be a little less intense…just as the weather will become once Autumn rolls around.
I hope that the moment you read the title of this blog post, Avril Lavigne’s smash hit from 2002 got stuck in your head (sorry, not sorry).
On a related note, it felt like it was the right phrase to use as a title for this post.
In the past, I’ve written how diabetes has turned me into a bit of a control freak (meaning that I don’t do well with the curve balls it sometimes launches into my path). I prefer a schedule – nothing too regimented, just enough to know what to expect in terms of diabetes issues in a day. And that’s not always possible; hence, I have some control-freak tendencies.
Lately, I’m also wondering if diabetes has made me more emotional.
The thought occurred to me when I was deep in self-reflection mode, a place I’ve found myself going to again and again throughout my quarantine. I started thinking about instances in which I let my blood sugar influence my mood, and I realized that it happens more often than I care to admit.
I wonder if the tie between my emotions and my diabetes exists because my diabetes requires me to be so attentive to my body at all times that it’s also caused me to have a heightened awareness of my emotions and what may be causing them. I definitely allow blood sugars, both high and low, to affect how I feel when they happen. I let the successes and failures of diabetes technology influence my mood. And when I start to get down in the dumps about non-diabetes things, it often turns into full-blown diabetes burnout.
Diabetes is complicated on its own.
But to think that it interferes with my emotions, too?
Isn’t it enough for diabetes to impact me just physically and leave my mental state out of it?
I feel defeated when it comes to just about every aspect of my life with diabetes as of late.
I feel defeated in terms of my blood sugars lately: I’ve experienced too many highs due to an ever-present fear of low blood sugars.
I feel defeated in terms of what my A1c reading might be at my endocrinologist appointment next month: I don’t even have a clue as to what the value might be right now, but my intuition is telling me that it’s higher than I want it to be, which sucks because I’ve tried hard to keep it down.
I feel defeated in terms of my diabetes supplies: I’ve had to pay a lot more money than I ever anticipated for them. I turned 26 less than 6 months ago and I’m having trouble imagining paying so much money for my supplies for the rest of my life, let alone the rest of the year. I know I’m not alone, but knowing that others are struggling (in very different and similar ways) makes me feel worse.
I feel defeated in terms of this blog: I feel like nobody else really cares about it except me. This is fine in some ways because one of the reasons why I write this blog is because it’s a form of therapy for me. But in other ways, this makes me sad because another reason why I started Hugging the Cactus was to make a positive impact, somehow, on the diabetes community that I love so much. But it’s hard. There’s many bigger, louder, more important voices in the online space that simply have a better reach than me. These people know how to connect with their audience in a way that makes a more profound impact than I ever could. Lately, I’m asking myself, “why bother” a lot more than I’m saying to myself “keep it up”.
I’m not writing about my diabetes-related feelings of defeat – my dia-feat – to garner sympathy or attention. I’m just trying to keep it real. It’s a little different than what I would consider conventional “diabetes burnout” to be, because I do still have that desire to thrive and do well with my diabetes management…but things just aren’t quite going my way.
I know that other people like me feel this way sometimes.
And I know that the dia-feat won’t last forever.
But it is important for me to acknowledge it now, so I can start figuring out how to dust myself off and pick myself back up soon.
Blogger burnout…it’s very similar to diabetes burnout, only not quite as frustrating because it doesn’t affect my physical and mental health as severely.
But it does best describe how I’m feeling right now. To be honest, I’m a passenger on the struggle bus at the moment as I try to balance many of life’s demands. I’m traveling frequently this month, attending numerous family and social events, scheduling all sorts of appointments, and trying to remember to breathe in between everything. A lot of this stuff is self-inflicted, I’ll admit, as I tend to thrive when I stay busy. But I won’t deny that it’s hard. When running this blog is tossed into the mix, I feel like I’m on the cusp of spontaneous combustion. Oh, and it doesn’t help that my blood sugars have been up and down as I run – no, sprint – from one thing to the next.
I put a lot of pressure on myself to deliver the best content that I possibly can to my readers, who I care about very much, even if I don’t know all of them personally. I do my best to post brand-new content three times per week, which involves a lot more work than you might think. I have to come up with a topic, create an image to go with it, edit the piece, schedule its publication, and prepare multiple social media platforms to promote it. And that’s just for one single blog post.
By no means is this a “farewell” post or even an “I’m-taking-a-break-for-an-undisclosed-amount-of-time” post; rather, I just want to be honest with my audience that I’m struggling to keep up delivery of solid content. Please don’t be surprised if I continue to republish old content (but still originally written by me) in the next few weeks. Please continue to visit the blog as often as you can. And please, bear with me as I get through this little burnout phase – I promise to come out of it and be a stronger writer before long.
Today, Christmas Eve, is my 21st diaversary. That right, my diabetes is officially “legal”. You can bet that I’ll be celebrating with a special shot tonight – and no, I’m not talking about the insulin kind of shot.
Last year, I wrote about the sheer joy I felt as I hit my 20th diaversary. While I certainly do feel joyful this time of year as I greet another diabetes milestone (and because I’m wrapped up in the spirit of the season), I also can’t help but feel a pang of sadness.
The fact of the matter is, I’ve lived with diabetes for 84% of my life. And that’s a hard pill to swallow.
I dream of a single day of normalcy. I want a day in my adult life in which diabetes isn’t at the forefront of my mind. Sure, I had just over a thousand days like that in my childhood…but the thing is, I don’t remember them. So they don’t count.
What I would give to have a solid, 24-hour stretch in which I don’t have to feel pricks from needles or hear buzzing, beeping devices. I wouldn’t have to feel as anxious about my blood sugars as I do on most days, and I would eat whatever the hell I wanted without a care in the world.
It sounds like a small ask, one day without diabetes, but at this stage in the game, it’d just be miraculous.
So on this day that is doubly special to me, I’m accepting that I feel a bit more negative than I did last year. There’s nothing wrong with that. In fact, it feels good to admit it, rather than force myself to write a bubbly blog post that simply celebrates 21 years of diabetes.
I’ll celebrate my own way today and enjoy the most wonderful time of the year, knowing that my little diabetes funk will pass on its own.
With that said, dear readers, I wish you a fantastic Christmas. Spend the day doing whatever brings your hearts happiness, and remember to take care of yourselves.
Last night, the College Diabetes Network hosted a Facebook Live that brought together a panel of young adults with T1D, psychologists, and special guests who discussed the mental health issues associated with diabetes. The conversation lasted just over an hour and a half, with viewers chiming in throughout to get their questions answered by the panel.
The topics covered by the panel included depression, burnout, anxiety, ADHD, and disordered eating vs. eating disorders. Incredible stories, insights, and tidbits of advice were shared as the panelists opened up to viewers and honestly answered the questions that were asked.
Several responses from the panel stood out to me, and I’d like to share what was said and why it affected me…
On T1D as a psychologically and behaviorally demanding stress in your life:
The idea of perfectionism…and you have to be perfect at everything, and transitioning into having to go into college, get good grades, do well, and plan for a successful career…and having diabetes also be a factor is overwhelming and can cause people to go into a state of ignoring it. -Karly
I related to this because I’ve always tried to be a perfectionist, in all facets of my life. Karly’s take on diabetes being an unwanted, demanding, and additional stress factor resonated with me because I also view it as just another thing in life that I have to try to handle perfectly – which, of course, is impossible when it comes to a chronic condition with a mind of its own.
On the concept of lowering expectations and setting goals:
It’s less about lowering expectations and more about establishing expectations that are real…Also, the way that diabetes is taught, I personally think is absolutely incorrect. Patients and loved ones are taught that blood glucose can be controlled…and that it responds to an algebra equation…what your insulin to carb ratio and what your sensitivity factor is can land you directly into the target, but what we know is the target is a zone, not a bull’s eye. And we don’t teach it that way. -Ann
I loved how Ann phrased that part I put in bold – I grew up thinking that I had to have my blood sugars right on the money at all times. If it was higher or lower than say, 120, I was failing (this ties in with that perfectionist attitude I was just talking about). But to hear her acknowledge that this way of thinking shouldn’t be taught was validating to me.
On the fear and anxiety of losing control from low blood sugar:
During a workout…whenever I was making progress, it seemed like something just pulled me right back…because of that, I started training high, purposely. I would start training in the high 100s, to almost the 200s, which is not good at all…I had to become conscious of that…because of my fear of lows [and feeling like I’m about to die]…I intentionally made myself high. -Jiggy
Working out has always been a challenge for me, and my fear of lows during a workout is pretty intense. To hear that Jiggy responds to that in the exact same way as me made me feel not so alone.
On accepting mistakes and that you’re not perfect:
Remember that you were never meant to perform this function. Your body was meant to perform this function. You are trying to take over from something that your body was supposed to do for you…remember you’re a human being [who is] being asked to do something you weren’t supposed to do. -Will
Yes, yes, YES. Will could not have said it better. It’s important to remind yourself that it’s not easy to take over a job that your body is supposed to do for you automatically as a biological function. You just need to try to do the best that you can, and not beat yourself up when you don’t always get desirable results.
A major thank you to William Jennette, Karly Kroeten, Jiggy Yoon, Aaron Sherman, Heather Levy, Ellen O’Donnell, Ann Goebel-Fabbri, and Quinn Nystrom for volunteering their time to get together for this Facebook Live, as well as for being vulnerable for perfect strangers on the Internet. I know it’s not easy to share personal stories, but the integrity and eloquence displayed by each panelist made for a powerful live video.
The College Diabetes Network’s website contains a variety of information on how you or a loved one can cope with the mental health challenges of diabetes. Visit their page to access materials that help explain touchy topics, as well as additional resources.