I’m feeling anxious about my appointment with my endocrinologist tomorrow.
I don’t know why. I like my doctor very much: She’s always encouraging, pleasant, and helpful. The only thing I’d change about our appointments is to slow them down a bit; sometimes, she whips through them so quickly that I forget to ask her the questions floating around in the back of my mind.
Could it be that I’m worried about my A1c test? Possibly. I don’t know whether my A1c has gone up or down in the last three months. I have stretches of time in which my blood sugar behaves the way I want it to, but I also experience clusters of days here and there of complete diabetes chaos. In the last month, for instance, there were a few too many circumstances in which my blood sugar was above 300 mg/dL. Each time, I’d correct the high, only to either experience 1) a sudden drop resulting in a low or 2) several hours of prolonged high blood sugar because it was taking the insulin a long time to take effect.
Now that I’m thinking about it, maybe those scattered, wicked-high blood sugars are the reason why I’m anxious about this appointment. I know that my doctor will probably ask me about them, and I’m going to have to admit to her that a combination of emotional eating, lack of carb counting, and general carelessness resulted in those highs. I know that she won’t judge me, but…I can’t help but judge myself for causing the blood sugar swings. The rational part of me is aware that it’s unhealthy to blame myself for occasional slip-ups, but the goodie-two-shoes, Miss “Perfect Diabetes” part of me is shaking her head in shame and disappointment.
If nothing else, this is a prime example of how diabetes can be an absolute (warning: foul language following) mind fuck.
Sometimes, you just gotta treat yo’self. (Parks and Recreation, anyone?)
One of my favorite ways to do that is through massage. I can’t think of a more relaxing way to unwind from various sources of stress than massage. Especially when your shoulders and neck are so tense that it feels as though they’re permanently knotted up.
So I went for a one-hour massage a couple of weeks ago to see if I could successfully take a mental break from everything while addressing my muscle tension. And I’m so glad I did that for myself. Plus, it didn’t hurt that my massage therapist was super attentive when it came to my diabetes.
I explained to her that I was wearing a tubeless pump on my lower back, and that she should feel free to massage around it. I also mentioned that if she happened to hear anything buzz or beep during our session, she should just disregard it – if my pump or CGM alarmed, I’d take care of whichever device that was going off at the end of the session.
The massage therapist couldn’t have been more reassuring. She let me know that she previously worked as a physical therapist and had experience in the field for more than 10 years. As a result, she’d seen just about everything over the course of her career – an insulin pump and a glucose monitor were nothing.
That short conversation before the start of the session really helped it start off on the right foot. I felt much better knowing that she wouldn’t be freaked out by my devices. My openness to talk about my diabetes also inclined her to ask me if it affected certain parts of my body more than others, and if she should be sensitive to that throughout the session. I appreciated her attentiveness, and she asked follow-up questions throughout the massage to ensure I was getting the best experience possible.
Not only did I leave feeling like a million bucks, but I also left feeling glad that my CGM and pump stayed silent throughout the one-hour massage: allowing me to truly free my mind from diabetes, even if it was just for a short time.
A couple weeks ago, I was convinced that I was going to go insane.
That’s because my graphs looked a lot like this for several days in a row:
All those red circles represent low blood sugars. The first day it happened, it was annoying. The second day, it evolved into concerning. Seven long days later, I was feeling incredibly burnt out as the low streak finally came to an end.
I have NO idea what triggered these lows. My activity levels were practically non-existent and I cut back on my insulin intake as it grew more apparent that this situation was sticking around for a bit. Besides standard stress levels, I wasn’t experiencing any crazy emotional swings that could cause wacky numbers. It was that certain, ahem, time of the month – but that happens every month, and I’ve never had a series of low blood sugars as a result of it. So what gives?
My honest assessment: Diabetes is unpredictable. You think you know it so well. You think you can have a handle on it when it decides to give you a big, old middle finger, as if to say, “Joke’s on you!!!”
And that’s beyond exhausting. The physical and mental toll that a week of low blood sugars had on me is indescribable, and it made me reluctant to even talk about the experience – because enduring it was enough, why the hell should I bother writing about it?
I write about it because I want it as evidence so I can remember that I can overcome any diabetes obstacle. I write about it because I want others to know that even though I seem okay on the surface at a given time, I actually might not be due to my diabetes. I write about it because I hope that another PWD can read it and say, “Yes, that’s exactly what it’s like!” or “I can relate.”
I write about it to feel less alone, and make other people affected by T1D feel less alone.
Nothing makes me feel as defeated as high blood sugar.
Maybe it’s because it takes so long for my blood sugar to come back down from a high.
Maybe it’s because I feel like I directly caused it – miscalculated my carb intake, or snuck in a snack that I shouldn’t have.
Maybe it’s because it makes me feel like I’ve lost all control. That I can’t do anything but monitor the situation and take more insulin as necessary. I hate feeling so dependent, so trusting, of my insulin alone.
Maybe it’s because the technology has failed me, and there’s few things more frustrating than that. Imagine doing everything the “right” way, the way you’re supposed to, and getting the “wrong” results. You begin to question everything and your emotions get the better of you.
Whatever the reason is, I know I’ve got to work on accepting the fact that highs happen. I’ve dealt with many over the years, and I know I’ll encounter plenty more in the future. They’re upsetting, tiring, and irritating. They test my patience as I wait for long stretches of time for my insulin to finally kick in and stabilize my blood sugar. They are one of the more mentally and physically draining components of type 1 diabetes management.
I tested three times in the span 60 seconds the other night.
High blood sugar.
That was the culprit. For five hours, I was high – over 300 mg/dL, to be exact. I still can’t quite explain how it happened. I didn’t eat more than my usual amount of carbohydrates at dinner. I didn’t deviate at all from my mealtime routine; the only thing that maybe affected this was the fact that I had to change my pod that night.
But still. It was maddening, sitting there and watching my blood sugar climb and stick to the 300s. I did everything I should do to correct it: increase my temp basal, take corrective boluses, drink water, refrain from eating. And yet, the high persisted. All I wanted to do was go to sleep, but I was afraid to. Yes, afraid to get the rest that my body needed! That’s what diabetes does sometimes – it instills fear that you can’t shake until those numbers change the way that you need for them to. It’s paralyzing; it’s helplessness in its purest form.
It’s why I ended up stacking my boluses that night, even though I knew it might not be a smart call. But I was so stuck in the high 200s and low 300s. What else was I supposed to do? I even tested THREE times in 60 seconds because I thought that my meter was wrong. I desperately wanted it to show that I was coming down, and felt tears sting my eyes when I realized it wasn’t. I had no choice but to wait some more, so I made myself comfortable in bed and watched the Gilmore Girls (because a nonstop dialogue and excellently obscure pop culture references are good for the soul). I could only get semi-absorbed in Lorelai and Rory’s back-and-forth banter though, because my mind was otherwise occupied by the nagging high blood sugars.
Finally, I saw that I was coming down to the mid-200s shortly before 11:30 P.M. I decided it was safe to close my eyes. But I didn’t dare do so until I set an alarm for about an hour from then, just so I could continue to monitor my blood sugar. I woke up when it blared, and let out a massive sigh of relief when my CGM showed I was floating down to 150 mg/dL.
I fell back asleep only to wake up again, two hours later: This time, it was because of a low blood sugar. I tested, saw that I was 67, and corrected it. But falling asleep wasn’t as easy this time around. Again, I felt fear – what if I continued to drop down? What if I corrected too much? I was so emotionally exhausted and consumed by the feeling that it took me well over an hour to drift back to sleep.
When I woke for work the next morning, I was 148. The evening’s episode was over. But my head was spinning as I did my best to analyze what I could and should have done better.
And this is when I told myself to stop. I had to stop beating myself up and going over every choice I made. I had to remind myself I did the best I could in that moment, and that should be enough. It is enough.
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.
The more I think about it, the more I realize that my anxiety towards my diabetes manifested itself in college. I was more worried about severe lows than ever, even though I didn’t have to cope with many of them.
But one particular day, it seemed like my blood sugar simply didn’t want to stay above 80. I was terrified. I knew all the tricks in the book to fix it, but that didn’t stop me from fretting over the matter. My lows consumed my mind and I couldn’t focus on anything else. I began to think about the “what ifs” – what if my blood sugar doesn’t come back up? What if I need help? What if I’m alone? What if I pass out? What if???
I was absolutely frantic, forcing myself to eat 15 or so grams of carbs every hour just to keep level as I monitored the situation. I remember sitting in a 500+ person lecture hall for my psychology class with a T1D friend, who watched me anxiously test my blood sugar three times within 30 minutes. “You’ve got to calm down a bit,” she’d said. “Remember, it’ll take your body time to process all of the carbs.”
She was right, of course. And by the end of the day, I hadn’t experienced a blood sugar below 80 for a couple hours. It seemed like the episode was over. And I was fine.
That’s what I like to think about when I remember this certain episode. I was fine. As scared as I felt at points throughout the day, I took action to stabilize my blood sugar. I monitored the situation carefully and still performed my responsibilities as a student by attending classes. I was fine.
And I will be fine, despite my diabetes, because I’m determined to overcome the hardest parts of living with it.