Tomorrow, I’m boarding a plane again for the first time in more than a year and a half.
I’m having some feelings about it.
The primary feeling is excitement. I’ve missed traveling – not the flying part – but I’ve missed the opportunity to see new sights and experience new things. I’ve been extra excited for this trip because my partner and I are both going to California for the first time for a friend’s wedding, so we definitely have a lot to look forward to regarding our plans.
But the secondary feeling is anxiety. A whole lot of it. I don’t quite know what to expect when it comes to traveling in this weird, not-so-new normal we’ve got going on. The only thing I do know is that I’m going to take as many precautions as possible (including masking up, carrying hand sanitizer, eating outdoors whenever possible, etc.) and try my best to quell my anxieties by taking comfort in knowing that I’m doing what I can to protect myself and others.
Of course, it’s easier said than done to conquer these anxious thoughts, and my pre-existing worries about traveling with diabetes complicate matters. For example, I’ve always had concerns about managing my blood sugars on flights. I’ve never been on one this long before (it’ll be about 6 hours), so I’m a bit stressed about that. Other pain points linger in the back of my mind: What will I do about meals? Will I have enough back-up supplies? Will I remember all my devices (and their respective charging cables)? Are my nerves going to drive my partner bananas? (He’s the most patient person I’ve ever met so I will be putting that to the test on this trip!)
So staying healthy and well, in addition to making sure I take good care of my diabetes, are top of mind. It makes me long for the days when getting from point A to point B was the most pressing part of planning a trip…
Through writing this blog post, though, I think I’ve come to realize that I’ve got to keep a third thing top of mind: having fun. The first two things are obviously important, but so is enjoying every minute of this vacation.
It’s just a one-night trip, but one that I’m super-excited about for a few reasons: 1) It’s for my best friend’s bachelorette weekend, 2) it will be the first trip that I’ve taken since I got vaccinated, and 3) it will be the first time in just shy of a year and a half that I will be gathered in-person with a group of people.
My anxiety and nerves are starting to kick in, but it’s not because I’ll be under one roof with nine other people (every person attending has been vaccinated, in most cases completely, and each individual will be taking a rapid-result COVID test to ensure the health and well-being of everyone for the duration of the weekend). Rather, I’m on edge because I feel like I’ve forgotten how to adequately prepare for an overnight trip.
Let’s be real, prior to the pandemic, traveling with diabetes could get tricky. Even if I was only going to be an hour away from home, I’d still pack back-ups for my back-ups, or at least do my very best to do so (let’s pretend that I did during that near-DKA episode a few weeks back). In addition to normal overnight trip things like clothing and toiletries, I’ve always had to leave extra room in my bags for spare pods, alcohol swabs, insulin vials, my meter, and the like. But for this trip, not only do I have to be cognizant of packing the “normal” stuff and the “diabetes” stuff, but I also have to take care to remember the “bachelorette” stuff – snacks, paper goods, and alcoholic beverages that I signed up to bring. And extra masks, hand sanitizer, and such because I want our group to be protected and to help protect others. There’s just so much to remember! I’m positively terrified that I’ll forget something, but I can’t let my stress cloud my thinking because that won’t lead to a positive outcome.
As a result, I’ve come up with a strategy to make sure that at the very least, the diabetes aspect of traveling is well covered. I started packing earlier in the week and made out a list of the must-bring items as well as the just-in-case items. I went to the store to buy extra juice boxes and snacks so I won’t have to worry about access to food at all times. I’m definitely erring on the side of cramming so much into my bag that the seams will split, but you know what they say – better to be safe than sorry.
So when I head out of the house tomorrow morning, my arms will be laden with so much stuff that it’ll appear as though I’m going away for much longer than one evening. But such is life – not just with diabetes, but with people you care about who make it worth it to bring so much to a weekend getaway.
You know that feeling you get in the pit of your stomach when you receive bad news? It’s like your heart falls to the floor and your stomach starts swirling from the perceived sensation.
That’s unpleasant enough on its own, but for me, it can also cause blood sugar issues.
The same thing can be said for when I’m on a literal roller coaster (which doesn’t happen often, but when it does, involves extreme coercion from family or friends) – I get that awful swooping sensation on top of some sort of blood sugar impact.
Whether it’s anxiety, adrenaline, fear, or just a rush of unidentifiable feelings, there’s no doubt about it: Extreme emotions tend to make my blood sugar unhappy by causing it to spike.
I’ve always been somewhat aware of this phenomenon, but I started thinking about it more last week when I got some upsetting news. (I’m okay, please don’t start to speculate on what it was…just a personal matter that I don’t care to discuss in greater detail here. Love y’all for understanding and respecting that.)
Actually, it’s kind of interesting to think about how the sequence of events unfolded last Thursday. I received a message that caused me to instantly panic. I was going to learn the context behind the message about a half hour after I got it, so in the interim, I was pacing all around the house and trying to figure out what exactly was going on. My stomach was roiling, my palms were coated in a light sheen of sweat, and my already-unruly hair frizzed out even more….
…and my CGM trend started going up, up, up, ever so slowly but noticeably.
I didn’t do anything to correct my blood sugar – at least, not right away. I waited until after I heard the specific news that had gotten me so worked up to really pay attention to my rising levels. I probably could have made my high blood sugar less severe by running a temporary basal increase right after I initially freaked out, but obviously, I had other things on my mind than my diabetes at that moment in time.
The whole experience was a stark reminder that food and insulin are far from the only things that impact blood sugar levels. Raw human emotion did that to me, and it will do that to me again in the future.
It sucks, but isn’t it also fascinating to think about how diabetes is totally a physical and emotional chronic condition, in every possible way?
Just breathe…a mantra easier said than done when each breath flows in and out smoothly, instead of in ragged, wheezing gasps.
I’m no stranger to asthma. I dealt with it throughout most of my childhood. The details are blurry on when I experienced my first asthma attack, but all I know is that it left me rasping and feeling (on top of sounding) like the cute little penguin from the Toy Story series, Wheezy.
The only thing that would keep my asthma symptoms at bay was nebulizer treatments. The nebulizer is one of those loud machines that generates vapors – albuterol medicine – that must be breathed in through a mouthpiece. I hated these treatments because they left me feeling shaky for a long time afterward and often caused high blood sugar, but it was much easier and more comfortable to breathe after them…so they were worth it.
Throughout my teenage and most of my young adult years, though, asthma slowly became a distant memory. I experienced it less frequently until it stopped altogether, and suddenly diabetes was the only thing I had to worry about. And I was glad for it.
But then…let’s fast-forward to the week leading up to Christmas. I was busy. I mean, wicked busy. I was running all over the place, jetting from one party to another, interacting with all sorts of people who were bringing germs from all over to each of these merry gatherings. I was getting run down and sleeping less due to the holiday celebrations, so really, it shouldn’t have surprised me when I felt the first tinge of a sort throat in church on Christmas Eve. But when that sore throat was soon followed by a tight chest and a whistling sound whenever I exhaled, I was taken aback – not to mention straight-up annoyed.
I treated the initial waves of wheeziness with my rescue inhaler. But when that started to be less effective over shorter and shorter lengths of time, I knew I needed to get in touch with my primary care doctor. So I did, and I met with a nurse practitioner who diagnosed me with something new: reactive airway disease. I left the office feeling shell-shocked over a new diagnosis that would mean that I would have to use a different kind of inhaler twice daily for the next two weeks.
I was afraid to start it for many reasons, but the two biggest ones were 1) I was nervous it would make my blood sugar go up and 2) it can cause thrush (also known as an oral yeast infection, which sounds positively nightmarish) if I forget to rinse my mouth out with water after each dose.
Overall, though, it doesn’t sound like too big of a deal, right? If it helps my breathing, it shouldn’t be an issue to add this inhaler into my morning and evening routines.
Silly old me, however, did turn this into a big deal. I wasted far too much time fretting over this inhaler and saying “woe is me” for having to deal with yet another medication that was extremely expensive (I paid $56.83 for the darn thing…I have no idea what the total would have been if I was uninsured).
My logical self knows that this won’t do any good. So now, I’m getting my act together and just rolling with the punches.
On second thought, that may be an understatement. I’m the type of person who always NEEDS TO HAVE a plan.
I always need to know the date, time, location, and what to expect during my length of stay when it comes to anything in life: a night out with friends, a quick trip to the grocery store, a vacation.
I always need to know what the plan is for dinner…and breakfast, and lunch, and snacks…every single day.
I always need to know what my options are should a plan not go according to my carefully thought out course of action; in other words, I take a great deal of comfort in having a Plan B…and a Plan C, Plan D…
The bottom line is, I think that my obsession with planning has a lot to do with how my diabetes has turned me into an absolute control freak over the years.
Let me explain: Try as I might, I will never have complete control over my diabetes. This has been a difficult reality for me to accept, but it’s the truth, and I know that nobody can ever truly control diabetes. It has a mind of its own sometimes, and the best that we can do is react accordingly to the curve balls it throws.
Since I won’t ever have control over this major, major thing in my life, I think this has triggered me to feel compelled to control everything else in my life…even things beyond my control. And yes, it’s as maddening as it sounds.
It affects myself and everyone close to me.
It is the reason why I worry so much and waste a lot of brain space on things that I shouldn’t.
And it’s something that, though I’ve come to terms with it, I would like to change because the rational part of me knows that it’s not healthy to maintain the unrealistic expectation that I can control everything that happens in my life. If I can accept things like random pod failures and unexplained high blood sugars, then shouldn’t I also be able to accept that other random things can just happen in life, such as a pipe bursting in my apartment or the car I’m driving getting a sudden flat tire?
The more rigid version of myself that existed a year ago would’ve absolutely panicked and melted down in the face of those scenarios, but the type of person I’m trying to be now actually recently handled both of those unpredictable events with a lot more coolness and calmness than I ever could have imagined.
So I guess what I’m getting at here, in a very long-winded way, is that my diabetes may have turned me into an obsessive planner control freak…but I’m just beginning to discover my ability to let go a little more and not let my diabetes affect my thinking and reactions to many other things that happen in life.
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.
Diabetes evokes curiosity for those who are not familiar with it. I’ve been asked many questions over the years – can you eat sweets, does it hurt when you give yourself shots, do you have to protect your pump from water, just to name a few – all relatively easy-to-answer, yes-or-no questions. But every now and then, someone will ask harder questions. And one that I’ve struggled to answer in a succinct manner is: What does it feel like to have low blood sugar?
There isn’t really a simple answer. I guess my textbook response is to rattle off a list of common hypoglycemic symptoms: shakiness, dizziness, sweating, slurred speech, weakness. But I know that other PWD experience slightly different symptoms, such as feeling cold instead of sweaty, or drastic changes in personality. And there are even some PWD who don’t experience any symptoms due to hypoglycemia unawareness.
So how exactly do I response to a question like that, one that’s more loaded than it appears?
I could tell the asker to imagine feeling simultaneously ravenous and disoriented. I could tell them to picture walking into the kitchen and feeling like inhaling the entire contents of the pantry – that’s how intensely your body craves sugar.
I could tell them to think about what it’s like to wake up in the middle of the night drenched in sweat. It might seem like a reaction to a nightmare, but it’s the body trying to convey a message that is, by some miracle, supposed to be grasped by someone who was just trying to get a solid night’s sleep.
I could tell them to envision feeling like energy is sapped out of every pore in the body abruptly, with little warning.
I could tell them that sometimes, it results in pure panic, particularly when no fast-acting carbohydrates are on hand or when no one is around to help you.
I could tell them that low blood sugar is one of the biggest sources of anxiety for many PWD, that it causes a deeply rooted fear. That it can sometimes lead to a PWD making unhealthy choices just to avoid a low from happening in the first place.
I could say all of this to anyone who asked me this question – and I still don’t think it would completely convey what it’s like to have low blood sugar.
How would you describe it to someone asking you about it? Would you use the terse medical explanation, or would you try to talk about how it really feels?
Leave your responses in the comments – I’d like to know how you handle this. And if you thought this was an interesting post, let me know. I’m thinking of doing a series about how I answer the more complicated diabetes-related questions I’m asked.
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.