Tingly

I knew something was wrong when my tongue inexplicably began tingling.

It was a sudden, prickly sensation – almost like I had pins and needles on my tongue. (This is a sensation I get in my feet when I’ve had them in a certain position for too long and I need to get the blood flowing properly again. A quick Google search taught me that just about anyone can experience this, so odds are you already know what I’m talking about.) And it lingered for a solid 20 minutes, making my entire mouth feel as though it was simultaneously numb and on fire from the unrelenting feeling.

This is my new(ish) low symptom: tongue tingling.

And I hate it.

It only seems to occur when my blood sugar hits the 50s or 60s, which doesn’t happen too often. But when it does, it hits me so abruptly that it catches me off guard every time. It’s an unpredictable phenomenon – usually, my first sign of a low blood sugar is feeling shaky/sweaty/dizzy. Once I feel those initial signs of a low, I’m pretty good about being quick to do something about it by grabbing something sugary to eat…and when tingly tongue strikes, it can make the entire eating experience unpleasant because it almost feels like I’m having an allergic reaction to my low snack. And it lasts longer than it takes for my Dexcom to pick up on a recovering low blood sugar.

I’ve genuinely been worried that I was having an anaphylactic reaction in addition to a hypoglycemic event, prompting me on more than one occasion to run over to the closest mirror to check and make sure that my mouth and face aren’t swelling up or turning red. Let me tell you, it’s enough to deal with the low blood sugar sensation – feeling like I’m having an allergic reaction on top of that makes a normally easy-to-deal-with low that much, well, suckier, to be blunt about it.

I classify it as only sorta, kinda new because I’ve dealt with something similar in the past. In fact, roughly 4 years ago, I wrote about “a fuzzy towel tongue” feeling that I experienced after a low blood sugar. It’s funny that I wrote about it because I think at the time, I only ever felt that a handful of times, and the symptom seemed to disappear. But now, it’s apparently back with a vengeance, as the tingling feels much worse now than the numbness I’d felt a few years back.

At least I know that I’m not alone. I’ve talked to my fellow T1D mother about this and she’s also experienced it, in addition to the folks I’d interacted with in the context of my original post on the matter. It might not be fun, but there’s (quite literally) strength in numbers.

Sluggish

Pasta for lunch. I knew it was a gamble, but on a snowy Friday afternoon when I had a bowl of leftover spinach-stuffed ravioli in the fridge that was begging to be heated up, I simply couldn’t resist it.

I took a larger-than-usual lunchtime bolus to account for the heavy carbs. Or at least I thought it’d account for the carbs. But I was way off. Roughly 45 minutes after I gobbled up my meal, my blood sugar was beginning to take off – with no sign of a smooth landing in sight.

Not that I noticed. Rather, I found myself feeling…slow. My eyes felt droopy with a gradual drowsiness that I couldn’t fight off. Normally, this would feel quite pleasant, especially if I was about to take a nap. But on a Friday afternoon, when I had some work items to wrap up, it was far from a welcome sensation.

As I sat there, staring blankly at my monitor and pretending I couldn’t hear my buzzing CGM that was trying to alert me to the current state of my blood sugar, I was falling deeper and deeper into a state of utter sluggishness. I craved the warmth emitting from my space heater by my desk, relishing how the heat lulled me into listlessness.

In that moment, I was the human equivalent of a happy little slug, oblivious to the realities around it and going about life at my own passive pace, without a single other care in the world.

A representation of me as a slug in a high blood sugar stupor, complete with pod.

I don’t remember what caused me to snap out of my stupor – perhaps I’d heard my CGM vibrate one too many times, or maybe common sense jolted me into realizing that I had stuff to do and couldn’t afford to be overcome by this sensation. But I did find myself peeking at the number that my Dexcom was reporting to me and being somewhat appalled by my hyperglycemic state, as well as being almost grateful for having a logical explanation for why I’d turned into a slow-moving shell of a person. It’s funny how even after 25 years of diabetes, a high blood sugar can still throw me off my game in such a dramatic way. Luckily, a solid correction bolus, change of scenery from my overly cozy desk in my bedroom to the cooler comfort of my downstairs setup, and a large bottle of water brought me back down to where I needed to be – maybe a bit more slowly than I would’ve liked, but hey, a slug can’t complain about swiftness (or lack thereof).

The Emotions of Low Blood Sugar

This post was originally published on Hugging the Cactus on October 8, 2018. I’m sharing it again today because as I sat down to write a new post, my blood sugar tanked…frustrating the hell out of me by taking away any and all creativity. But it did remind me of the timelessness of this post, and how the emotions of a low blood sugar can be so varied. Read on for more…

Previously, I’ve written about what it feels like to have low blood sugar. While many people with T1D feel the same symptoms as me when they experience a low, there are even more who experience a wider variety of emotions and sensations.

Renza, a T1D Twitter friend of mine, did a little investigating into how others would describe what it’s like to have a low blood sugar. She sent a tweet that read:

#Diabetes friends. I’m crowdsourcing (again). If you had to use ONE WORD to describe how hypos/lows feel to you, what would it be. Go!! #Hypoglycaemia

She received nearly 100 responses, which I’ve compiled into the below graphic.

Looking at this word collage is a bit startling because it represents the vast array of feelings associated with low blood sugar. Most of them are negative. A handful of them start with the prefix “dis”, which describes something with an opposing force. A couple of them relate to feelings associated with eating. And just about all of them can be summed up as sensations that I wouldn’t wish on anyone.

To me, this graphic serves as a stark reminder that diabetes is more than just a chronic illness that affects the body: It affects the mind, too.

The Inconvenience of Low Blood Sugar

Blood sugar drops (and spikes, for that matter) are never convenient, per se. They often take my attention away from the moment or experience that I’m in, and it just so happens that there are times when it’s a bigger deal than others.

Case in point? The blood sugar plummet I dealt with in the middle of reactive dog class for my pup.

Let me set the scene: It was a warm October evening in New England – perfect weather for walking a dog around the neighborhood. That’s exactly what my classmates and I were doing: We had about a dozen dogs that were only just outnumbered by humans getting walked in repetitive loops. The challenge was to test the dogs for their reactivity and correct them whenever they tugged too hard on their leashes or got too excited by another dog, person, or squirrel that was also out and about.

The training exercise itself wasn’t difficult; in fact, it was nice to watch the sun go down and chat with the other dog owners in the class while I kept my dog by my side. But what made it a challenge was when all that walking in circles finally caught up with me and my blood sugar and I started to feel an oncoming low.

I was stressed about it, because I was feeling the shaky/dizzy symptoms of a low, but was struggling with finding a good time to correct it. After all, it would’ve been kind of weird for me to randomly start gobbling down some fruit snacks in the middle of a conversation with the other dog owners, and I really wasn’t up for explaining diabetes to everyone and taking attention away from the training. I thought I was in the clear when it was my dog’s turn to be walked by another trainer – my hands were free and I totally could’ve eaten something quickly – but I balked at it because again, I found myself engrossed in conversation as I was given pointers for walking Violet.

In hindsight, I probably should’ve excused myself from the training exercise to sit down and eat my fruit snacks, but I simply wasn’t in the mood for dealing with my stupid diabetes at this point in time. This is the one hour per week that I’ve got with my dog that is solely focused on training her, and I wanted to be present in the moment. But I’ve got to acknowledge that I can only take good care of my dog if I take care of myself first, and I neglected to do that as soon as I should’ve in this situation.

Ah, well. It was what it was, and luckily the low happened towards the end of the class so I was able to eat my fruit snacks in the privacy of my car without having to explain myself to anyone. Next time, I’ll be better prepared with a sugary drink (like Gatorade) that will be much easier to consume without explanation while walking my dog.

Diabetes and Room for Error

I have a confession to make: I’m a bit of a perfectionist. I know that perfectionism can be my own worst enemy and hinder me from accomplishing goals, but it’s just the way I am in some situations – particularly, with my own diabetes.

My diabetes perfectionism means that there is very little room for error when it comes to dosing insulin properly for the foods that I eat. Like many people with diabetes, I strive to bolus as accurately as possible to ensure better blood sugar outcomes, but I don’t always succeed at this.

That’s why I try to reduce the amount of possible error by being very specific about the number of carbs I consume at mealtimes. In fact, I have a self-imposed carbohydrate limit of about 60 grams of carbs per meal. I don’t know where this number came from, and I definitely exceed that from time to time, but for some reason I never input a number greater than 60 carbs into my PDM even when I know I’m probably eating more carbohydrates than that.

This is because of my fear of the room for error, and the potential consequence being a severe hypoglycemic event.

Something I learned by writing this post? My inner perfectionist is at war with my comfort with room for error.

In other words, even when I may be exceeding my “comfort carb count”, I know that the room for error grows with the amount of carbs that I consume. More carbohydrates = more insulin = a greater room for error, something that freaks me out and that I attempt to control by only bolusing for what I feel is an agreeable amount. I’ve written about this phenomenon of mine before and my desire to get over it, but as I continue to work through it, I think it can only be done if I change my thinking about the margin of error that I’m willing to tolerate.

This is where it all comes full circle and I begin to understand how perfectionism, the room for error, and my diabetes management all play off one another…which is to say, they don’t fare well together whatsoever. Because my room for error is low, I don’t dose correctly for some meals, which drives my inner perfectionist crazy because it’s at conflict with my inner scaredy-cat who’s afraid to dose the right amount because I don’t want to deal with any negative outcomes. I’m literally in conflict with myself, which is a wild thing to realize as I write this blog post, but it’s the truth and I’m glad I’m uncovering it.

It will absolutely take time, but as I begin to let go of some of my perfectionist tendencies, I’d like to learn how to also usher in a greater comfortability with the room for error. I’m looking forward to exploring this and hope that I can reconcile the two so me and my diabetes can live in better harmony.

Constantly Learning

As I approach my 25th diabetes diagnosis anniversary (coming up this Christmas Eve), I marvel over how much I continue to constantly learn about my chronic condition.

You might think that I should be an expert after all this time, but that’s definitely not true. Sure, there are many predictable aspects about diabetes by this stage in the game. I’ve learned how to read my body’s signals. I’ve got a good grip on the mundane parts of diabetes management (e.g., changing my sites, reacting and treating various blood sugar levels, exercising with diabetes without wild blood sugar oscillations, and so forth). I know quite a bit about diabetes technology, even the kinds that I’ve never used before (and I attribute much of this knowledge to my friends and coworkers with diabetes, as well as the fact that I have an inside scoop on a lot of this stuff because I work in the diabetes sector).

But this doesn’t mean I’ve learned all there is to know about diabetes, the terminology that defines it, the research that is being conducted about it, or the innovations that are consistently occurring when it comes to technologies and therapies.

Little “cartoon me” likes to learn best with a book in one hand and coffee in another – hmm, maybe ACTUAL me should adopt this strategy!

A good example of this? I heard the acronym “FNIR” for the first time the other day when I was at work. A clinician was breaking it down as standing for “flat, narrow, and in range”, which is a pattern that can be visible on a CGM device that indicates tight control over blood sugar levels. My mind was kind of blown when I heard this; while the concept itself isn’t revolutionary, I had no idea that doctors had actually defined the phenomenon. This might seem like an insignificant example about learning something new; but on the contrary, it’s major to me because it’s something I hope to achieve on a daily basis (literally) – I just didn’t have the words myself for it. Now that I know it, I’d like to be able to use it during my upcoming endocrinology appointment as a tool to describe to my doctor that I want her help getting an FNIR graph more often.

Constantly learning can be tiresome at times, but it just goes to show that it’s good for me because all roads point down a better understanding of my diabetes – something that I will always want and always shoot for.

High…Why?!

Ugh, high again? Why does this keep happening?!

I mused to myself as my Dexcom vibrated incessantly, alerting me to the state of my blood sugar.

I’ve actually been wondering that very thought (and cursing out loud about it) more often than I’d like in recent weeks.

High blood sugar = the diabetes version of kryptonite, at least for me.

It’s been about 3 weeks since I started the Omnipod 5, and I guess my high hopes for the system to revolutionize my blood sugars came to be a little too literally. The 5 has been a godsend in terms of 1) helping me sleep through the night as I’ve only woken up once this month to correct a low OR high blood sugar and 2) catching lows before they happen or before I have to eat something in order to bring my BG back up.

But what the 5 and I are struggling with is the exact opposite of the latter, and that is catching highs before they happen – and then reacting accordingly. I’ve found that I’m dealing with more rapid and prolonged spikes than I thought I’d be. I’m doing what I can to proactively treat them myself by bolusing when they occur, but for some reason, it seems to take a solid 2-3 hours for my blood sugar to come back down nearly every time.

After consulting with some of my diabetes pals about this, and giving it some further contemplation, I’ve got a 3-step action plan to combat these highs:

  1. Give my Omnipod 5 more time to learn my body’s patterns – I’ve heard across the community that it can take several weeks for this to happen most effectively, so I need to try to be patient and wait for the results to occur.
  2. Continue to correct for highs when they occur, and do so swiftly. One of my colleagues said this helped a lot in the beginning, so I will continue to monitor for highs diligently and not be shy about bolusing for them (as long as I’m not stacking insulin too much).
  3. Pre-bolus, pre-bolus, and pre-bolus some more. I’ve always been a believer in the power of the pre-bolus, especially since I know that Humalog typically takes 60-75 minutes to start working in my body. I’m going to build pre-bolusing into my schedule and try to do it at least 30 minutes before I actually eat each of my meals, and we’ll see where that takes me.

Hopefully, this plan of mine coupled with my automated insulin delivery system will nip these high episodes in the bud before long. I can’t wait for “why, high” to become “smooth sailing” and translate into beautiful, level Dexcom graphs!

What Happened When My Blood Sugar Crashed in the Grocery Store

I knew something was wrong when the walls of the soda and seltzer aisle felt like they were closing in on me, Star Wars-trash-compactor style.

You would think a blood sugar is no sweat (pun intended) in a place where food is so easily accessible, but this experience was far from it.

On a recent trip to the grocery store, I went low. And when I say low, I mean low – I wasn’t just shaky, I was sweating literal bullets and having a hard time seeing straight in front of me.

My boyfriend – thank goodness he was there – knew something was wrong just by looking at me. He suggested that I grab some fruit snacks from my backpack and I heeded, tearing open the small foil packet and tossing the contents back as quickly as I could. I chewed, grimacing as I tasted the strangely saccharine, perfume-y gummies, but I barely cared about the taste. I just wanted to feel better. That’s when my boyfriend placed a hand on my back, noting my clammy state, and escorted me over to the dining area at the front of the store.

“Just stay here, I only have a few things left to grab. Maybe you’ll be feeling better by checkout time,” he said, before asking me if I was okay to be left alone.

I was. I hated that he was seeing my like this, in this vulnerable, sweaty state that seemed impossible in the chilly air of the grocery store. I told him I would sit and wait there for him, fighting the feeling that I was a small child waiting for a parent to finish up some boring adult task. As I nearly collapsed onto a chair, all I wanted to do was shrink so nobody could see me: It seemed as though all sets of eyes in the vicinity were locked on me, the perspiring wonder who looked quite unwell.

I was only on my own for about 5 minutes, but time dragged as I anxiously awaited my boyfriend’s approach to the checkout line. I thought I’d wanted to be alone as I let the fruit snacks kick in, but turns out the opposite was true. I clung to his side as I slowly registered that I felt safer around someone who knew exactly what was wrong with me and how to handle it if things got worse.

As we exited the store and loaded the groceries into the car, I noted that my shakiness was dissipating, as was the beads of sweat on my body. This low episode was over and I was relieved to be on the other side of it. I was also relieved that I didn’t have to go through it alone: turns out lows are a bit more bearable when you have someone else with you to help you through them.

A Weekend of Bagels, Pizza, Ice Cream, and…Good Blood Sugar?

Would you believe me if I told you that last weekend, I ate mostly carbs for 36 hours straight and totally avoided high blood sugars the whole time?

I looooove carbs. Almost as much as Oprah Winfrey loves bread.

It sounds wild, but it’s the truth! I went on my annual weekend getaway with my college besties and it was the loveliest time filled with sunshine, conversation, and tons of delicious food. I can’t remember the last time I ate that much in such a short window of time, but it was all worth it, especially because my blood sugars didn’t pay the price for it for once.

Here’s the breakdown of what I ate:

  • Friday:
    • 2 slices of Mediterranean-style pizza and 3 chicken tenders for dinner, the first official meal of the weekend trip
    • 2 glasses of wine
    • Handfuls of crackers and cheese because who doesn’t love that with wine
  • Saturday
    • 1 blueberry bagel accompanied by 1 fried egg for breakfast
    • Salad and heaping scoop of ice cream for lunch
    • Pita chips for a snack
    • Panko-crusted haddock with jasmine rice and veggies for dinner
    • 2 cans of cider (and maybeeeee a glass or two of bubbly)
  • Sunday
    • 1 everything bagel slathered in goat cheese plus 1 fried egg for breakfast
    • 2 slices of leftover pizza for lunch, which is also when I arrived home from the trip

It definitely wasn’t my healthiest, most balanced weekend of eating, but I’m more than okay with that because it was about enjoying my time with my friends and indulging a little rather than stressing the whole time about bolusing and blood sugars. And you know what, I think that my laidback, let’s-just-savor-this approach is partially the reason why I had such stellar weekend blood sugar levels. That, coupled with extended boluses for most of my meals (you know that pizza and bagels contain alllll the slow-acting carbohydrates), really helped me achieve the relaxing weekend that I wanted.

Now if only I could get away with this on a regular basis – as I write this, my blood sugar is coasting from a peak of 248 back into the low 190s after I dared to consume a bagel at lunch in the middle of my busy workweek. But it’s all good, and maybe just evidence that I should try to remember to live in the moment on weekends of fun like this one and prevent diabetes/blood sugar from taking center stage. Perhaps that’s the key to more stable numbers.

If nothing else, this serves as a reminder to me that even with diabetes, I can still enjoy a sh*t ton of carbs every now and then.

What It’s Like to Wake Up in the Middle of the Night with Low Blood Sugar

You stir suddenly from a dreamless sleep, knowing that something must’ve disturbed your slumber but not quite sure what it may have been.

This blog post was inspired by a recent middle-of-the-night low that went…well, exactly as I wrote it here. I wrote in the second-person perspective so you might be able to imagine what it’s like, if it’s something you’ve never experienced before.

Reflexively, you reach over to where your phone is perched on your nightstand. You check your notifications and confirm what you’d been hoping wouldn’t be a problem tonight: Your blood sugar is low and you must do something to fix it.

You unroll a couple of Smarties from their package, almost surprised at how dexterously you do so. After all, it’s an odd skill to have honed over the course of your life to be really good at opening up packages of the food just moments after you were sleeping soundly, but you’re accustomed to it. You chew up the Smarties as quickly as you can, grimacing slightly as their sweet-sour taste mingles with traces of toothpaste from when you brushed your teeth before bed. You sink back against your pile of pillows, sighing, as you wait for your blood sugar to come back up.

You wait. You wait some more. You scroll mindlessly through various apps on your phone. You’re not feeling better. You wonder to yourself, how much more do I have to do to fix this? You wish you weren’t alone right now. Low blood sugars are scary to deal with on your own, especially when they sneak up like this in the middle of the night.

Your mind begins to spiral as those nasty “what ifs” enter your thoughts. What if you plummet further? What if you lose a lot of sleep over this one pesky low? What if you don’t recover from this low and…?

Just as you begin to think of the most unpleasant scenario, you realize that your shakiness has subsided. The sweat on your skin has dried and your vision seems to be less foggy – it’s hard to tell in the dark, but not wanting to turn on anymore lights, you settle back into bed more comfortably and close your eyes.

You hope you can go back to sleep quickly. You hope that you don’t have to wake up again for the rest of the night for any blood sugar-related issues. You hope that you aren’t exhausted because of this one tomorrow.

You hope that tomorrow night is different, but with diabetes, you never know.