Blame Game

Most people think of diabetes as a very physical disease, but there is a huge mental and emotional component to its management.

As I’ve said before, diabetes is one of those things where you can do everything right, and still not end up where you want to be. Super frustrating- like throw-your-pump-against-a-wall frustrating. Not that I’m suggesting that’s a good idea, because pumps are mega expensive, and you should never intentionally damage your pseudo-pancreas. But the sentiment is the same.

The other night, I went out for dinner with my roommate and her family for her birthday. It was fun, and we had some good food! I knew there was a possibility that my blood sugar could be affected during the night while I slept, but I did the best I could in calculating my insulin dose.

My CGM probably woke me up about 5 times during the night as I dipped below and rose about my “high alert” threshold, then started rising more dramatically. This resulted in several correction boluses and tests on my meter that kept me up for a fair part of the night. As I climbed out of bed feeling zombie-like and dehydrated, I found myself thinking,

“I shouldn’t have…”

Shouldn’t have celebrated my friend’s birthday the way anyone else would have? Shouldn’t have eaten the part of my dinner that I knew might give me trouble later? Shouldn’t have assumed that one correction bolus (with a little extra for good measure) would be enough to bring my blood sugar down to a level that wouldn’t make me feel sick in the morning?

The reality is, I had done everything I possibly could to both enjoy my friend’s birthday and keep my blood sugar under control. I regularly put 150% into my diabetes management, but often don’t see the results I’d like.

In a more extreme example, last fall, my blood sugars were very high (high 200s-low 300s) the vast majority of the time for a few weeks, despite massive correction boluses, basal and carb ratio changes. The fact that I was having trouble putting in pump sites where the insulin would absorb well was not helping. I felt sick and dehydrated and upset with my pump all the time, and one night during class, I developed blurry spots in my vision.

I was absolutely terrified. I could barely form coherent sentences when I called my mom. Had I damaged my vision by not taking proper care of myself?

Luckily, the endocrinologist on call at my doctor’s office assured me that it was likely a temporary fluid imbalance in my eyes, caused by my frequent high blood sugars. And sure enough, my vision returned to normal shortly afterwards. But I still blamed myself for this scary incident- even though I was doing my best to take care of myself in a difficult situation.

All anyone can expect from you in managing your diabetes is your best effort. After all, you didn’t ask for your body to attack your pancreas. Your best IS good enough. Don’t let anyone tell you it isn’t. Don’t feel bad if everything isn’t perfect all the time- what would you have to sacrifice to get the control you want? I think it’s better to live your life freely, have fun, and enjoy your experiences, instead of constantly worrying about keeping your blood sugar in range.

In case anyone was wondering, my eyes suffered no lasting damage from that incident, and I have a much better relationship with my pump at this point in time. I’m still working on not blaming myself when my blood sugars are out of range- but what goes up must come down, right?

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On Losing My Security Blanket

Tonight, I’m sitting on the couch in my apartment, writing this blog post and listening to “Hello” by Adele (which is hauntingly beautiful, and somewhat appropriate for what I’m writing).

A year ago today, I was also sitting on a couch, back at home. I was clutching a pillow and watching “The Golden Girls.” And I would stay there until 3 am, finally choosing to eliminate all distractions, and try for some much-needed sleep.

I had just ended a relationship; gotten rid of my security blanket. I lost something that had been a constant in my life for two and a half years, something that carried me through the difficult transition to college. I lost many of the plans I had made for the future. I lost my sense of direction.

But on that night when I lost so much, I took something back, too- my sense of self.

The anxiety-and stress-riddled girl who barely left her room and HAD to be perfect at everything? That wasn’t me. “Me” is someone who gives everything her all and tries her best- and THAT is perfect for her. And above all, she takes care of herself. Perfectionism is way less important than happiness. The quiet girl who shied away from getting to know new people, and barely talked? That wasn’t me either. Nowadays, if I’ve got something to say, you bet I’ll say it! I also happen to think I can be pretty witty and funny at times. That was a side of me I didn’t even know existed a year ago.

Last year, I had plans for my future. Today, I still have plans- they’re just different. And a lot less rigid. (Seriously, what 20- year old knows exactly what they’re going to do with their life? No one.) I’ve learned how to live- to be open to new experiences, discover passions, give myself credit for my abilities, and make my life anything I want it to be.

A year ago, I lost my security blanket. I took back myself, and my future.

In the words of Adele ~

“Hello from the other side.”

Burnout & Blindness: The Emotional Impact of Diabetes

I wish I could say that I had stellar control of my blood sugars. I wish I could say that when I get my A1C checked in a couple of weeks, that number will be better than last time. I wish I could say that everything is just peachy with my diabetes.

Because at this moment, it’s a little bit out of control.

My CGM looks like some sort of insanely treacherous mountain range. The other day, I accidentally fell back asleep after clearing my low alert at 2 am (happens to the best of us…right?) and spent three hours at 70 mg/dL. Thankfully, my CGM went off again when I hit 55 mg/dL; the rare (for me) quadruple vibration sent me into panic mode, and I quickly downed a juice box. Later that day, I soared up to 360 after inserting a faulty infusion set that felt more like a sword stabbing me in the stomach than a 13 mm piece of plastic. I put in a new site, corrected, and my blood sugar performed a blindingly fast descent to 75 mg/dL in about 90 minutes. I spent the rest of the night eating and drinking about 50 carbs worth of juice, gingersnaps, and granola bars, hoping for up arrows instead of down on my CGM.

I have seen it all with my blood sugars over the past few weeks. From spiking to 300 at 1 am (necessitating my basal rate to double- for about a week), to strange mid-afternoon lows despite my basal being 0.3 (seriously- it can’t get any lower), I have come to dread looking at my CGM. Scrolling to the 24-hour display is like a form of torture. I’ve been used to super tight control for most of my life- and this is anything but tight.

I’ve lost hours of sleep making sure lows come up and highs come down. I’ve spent nights out with friends glued to my CGM, waiting for my blood sugar to drop so that I could eat. Some nights, I’ve elected to just stay in all together- the pressure of trying to manage my blood sugar and have fun at the same time was just too much. I left class one day crying because my blood sugar was 300 and I had no idea how it happened (I still haven’t solved that mystery).

Diabetes is one of those things where you can do everything right, and end up with less-than-stellar results. There often isn’t a big return on the investment of your time; I have given diabetes management 150%, and my A1C has not budged in 3 years. It takes an emotional toll; I’m exhausted, discouraged, and if giving up didn’t have serious health consequences, I’d be waving a white flag. We don’t talk about the emotional impact of diabetes very often- but we should.

Ask any diabetic about the complications we may face one day, and they’ll quickly rattle off a list of scary physical ailments. But fewer people will mention depression, “diabetes distress,” burnout, anxiety, and diabulimia. These mental and emotional side effects of managing this chronic disease 24/7/365 are no less serious than physical effects, like blindness and neuropathy, but the attitude in our culture surrounding mental health allows amputations and nerve damage to dominate most of the conversation regarding diabetes complications.

If anything, we should be talking about the emotional impact of diabetes even more than the physical impact, especially for children and young adults. These concerns are much more relevant to this age group; at 19 years old, I was much more concerned about burnout than blindness. Being able to voice concerns, express our anger, frustration and joy, and get help when we need it; these things will help us feel more balanced in a life that can seem so out of control, so that we can take care of ourselves- and worry less about what diabetes will do to our bodies and minds.

So if your blood sugars are having a great day- cheer! Celebrate! If you’re having a not-so-great-day, rant about it. Talk to your friends or family. Just know that you never need to hold your emotions in. You have every right to express how you feel about this unpredictable disease you never asked for.

I’m just gonna cross my fingers and hope that my A1C isn’t TOO bad next week. And even if it is- I did my best.

This Is Not a Cell Phone

Let me start off by saying that you should never have to justify anything about your diabetes to anyone.

Except if that person is a college professor, whose exam you’re trying not to get kicked out of.

I started on my CGM last March, and because most of my classes did not have exams last semester, I wasn’t too concerned about the receiver going off at a time when it shouldn’t. My first exam of the fall semester however, took place yesterday, in a class with a professor who is VERY strict about cell phone noise during exams. If your phone goes off, you are kicked out of the exam with a zero. And did I mention how all belongings have to stay at the front of the auditorium where the exam is being held? Panic time! I have no problem with shutting my phone off before the exam, but as a diabetic, I’m equipped with two devices that look, and can make noise, like cell phones. And they can’t leave my side. Literally. One is stuck on my skin, and the other is connected by a 20-inch tube that ends inside my body.

So I did what any proactive person would do, and sought out my professor after class to explain my situation. She was very understanding, and, long story short, if my CGM goes off, or I need a juice box during the exam, I won’t be kicked out. I was TREMENDOUSLY relieved; it’s always a toss-up when you have to explain diabetes to others, whether they will be accommodating or inflexible. We shouldn’t have to justify what we need to do to STAY ALIVE to anyone (because by law, we’re allowed to), but sometimes it’s unfortunately necessary.

This situation, along with leading my first College Diabetes Network chapter meeting of the year, and a conversation with a friend, really got me thinking about the subject of diabetes as a disability. We all experience diabetes very differently, and anyone who identifies it as a disability is totally right. Diabetes makes it really difficult to do things, like going out to eat, exercising, or even getting on a plane, that pose no issues for people with functioning pancreases.

I, personally, do not identify as having a disability. I see diabetes simply as an extra set of challenges for myself. It doesn’t prevent me from doing anything; I just have a few more hoops to jump through to get where I want to be. I’ve balked at the idea of registering with Disability Services on campus for this reason, even though I know that they can provide valuable support if there is ever a problem.

Even when diabetes has the potential to get in the way of my daily routine, I do everything in my power not to let it. Last summer, my pump site failed and my blood sugar went up to 590 (note to self: never change a site before a froyo run). I was up until 3 in the morning bringing it down (shout out to the on-call endo at my practice who calmly helped me out as I did my best to not be a sobbing 20 year old diabetes-veteran). I was dehydrated and exhausted, and had to be at work for 8 am the next morning. I toyed with the idea of calling out- but at that point in my life, I was starting to feel like diabetes was consuming a lot of my energy. So I got a few hours of sleep, loaded up on water, and showed up on time for work the next morning.

And crashed when I came home- but who wouldn’t, after working on 4 hours of sleep?

Diabetes is just something that makes me, me. Without it, I wouldn’t be a leader, I probably wouldn’t be as responsible or healthy, and I certainly wouldn’t be on the path to becoming a nurse. I’ve let it define me in the best way possible. I’ve embraced the lifestyle changes I make because of it, and taken advantage of the opportunities it’s presented me with. To me, diabetes has enabled me more than disabled me.

Explaining your juice boxes, or insulin pump, or CGM is just the unfortunate reality of living with diabetes- but explaining your devices should never prevent you from doing something you want or need to do. When I spoke to my professor about my pump and CGM, I chose to say “I’ve got these medical devices that might make noise during the exam, would you rather me sit up front?” rather than ask whether it was okay for me to have my devices. Because it is totally okay for me to have my devices. They were not preventing me from taking the exam the way everyone else takes it. They just had the potential to noisily inform me of my blood sugar levels, instead of incoming calls or texts.

I’m happy to report that my exam went off without a hitch; I think I scored very well, and there were no alarms from my CGM or pump. I did hit my high blood sugar alert level (200 mg/dL) before the exam started, and stayed over 200 for the duration of the test- but better high than low, right?

To My Freshman Self

As I prepare to start my senior year of college, I’ve reflected quite a bit on the first three years, and the experiences that have brought me to today. There is so much I wish I could go back and tell my freshman self- I haven’t had the easiest or most enjoyable time in college so far, but in hindsight, I can clearly see what I could have done to change that.

I dealt with near-crippling social anxiety for most of my college career, and I truly wish I could tell freshman-me that the way to deal with that isn’t by avoiding the situations that make you scared- it’s by taking the plunge, and talking to that person, or going to that club meeting, or doing whatever it is that you’re convinced will cause the world to end if you do it. The world won’t end, I promise. Don’t be scared to take a risk (as long as you aren’t doing something destructive. Please don’t take those kinds of risks). Even if you don’t like it, or it doesn’t go the way you planned- what’s the worst that will happen? You learn something.

Also, change is COMPLETELY and TOTALLY okay. Decide you hate your major, and want to change it? Cool! Want to try a brand new activity, or get a job or internship unlike anything you’ve ever done before? Awesome! Develop a love for something you previously hated? Way to go! College is all about exploring, and figuring out who you want to be. Changing your mind is a very normal part of this process, and everyone does it. New people and passions may replace the old ones in your life, but they don’t have to- there’s room for everything and everyone you love.

I really wish someone had emphasized the importance of taking care of yourself in every way in college- physically, mentally, and emotionally. I’m practically a walking advertisement for this sort of thing now as a public health major, but freshman-me could have been a lot better at taking care of myself. Besides the obvious benefits of staying in shape, eating well and exercising have the power to transform your mood, and make you feel all-around better. Now, if I’m feeling anxious or stressed, I’ll go for a walk or run, or put on some music and dance around- dance is a very fun form of exercise, and I do it often because I enjoy it. (Sorry to the people who live below me.)

Above all, I wish I could tell myself to get out and experience life. Staying in your dorm or going home EVERY weekend is no way to enjoy the time you don’t spend in class. You don’t have to party (although if that’s your thing, live it up! Safely.); find some friends you can catch a movie or a show with, or hit up an on-campus activity (there are zillions of these at UMASS, and I wish I had taken better advantage of them while I was living on campus). You work hard during the week (I hope)- you deserve to let off steam!

College can be an enormously overwhelming change from what you’re used to, and just remember that there are always people to talk to who want to help- your parents, siblings, friends, RAs. Everyone wants to see you succeed, so reach out if you need support. You’ll get it!

Best of luck to everyone going back to school- you’ll be amazing, I promise 🙂

Learning to live

What amazes me most about starting my senior year of college in a few weeks isn’t how quickly the time has gone by. It’s how much my life, and life plan, have changed. When I began my freshman year in 2012, I was majoring in communication disorders. I was going to graduate a semester early, get my master’s degree in speech therapy, and get a job working with children. I knew what my strengths were (and weren’t), who I wanted to marry- you name it, and I probably had some sort of plan for it. I should mention that I also had tons and tons of anxiety, especially social anxiety. I was terrified of being in any unfamiliar situation that required me to interact with other people. There were some nights my freshman year when I would eat cereal and chips from the vending machine for dinner. I just couldn’t get past my anxiety and leave my dorm. At the end of the year, to say that I was relieved to move out and go home was an understatement. I pushed the fact that in only 3 short months, I’d be preparing to move back, to the back of my mind. I worked at a new froyo place in town, hung out with my boyfriend, and took yoga classes at a local studio. As July gave way to August, the familiar feelings of anxiety began to set in, and I knew something needed to change. I was shutting down new opportunities, and putting myself down in the process- all because of anxiety and its resulting self-descriptors. I wasn’t good at lab sciences. I could never get an internship far away from home. There was no way I could balance having a job and taking classes at the same time. I couldn’t manage my diabetes well. I couldn’t make new friends. And the thought of a future that was any different from how I planned it was something I couldn’t even think about. I had gone into “identity foreclosure,” as I learned in my adolescent psychology class. And the identity I had foreclosed on was one in which my strengths weren’t that strong, my confidence wasn’t too high, and one that absolutely had to stay the same. Not for long. I discovered my school’s public health major, and switched into it immediately; it was perfect for me. After taking the core classes, I had so much freedom of choice for the rest of my credits- and I could tailor my class schedule to whatever interested me. I joined not one, but TWO clubs, one of which I am now the president of. In April, I applied to become a peer advisor (which involved a LOT of interacting with people I didn’t know) for my new major the following year- and was offered a position, despite my worries that the other applicants were much more qualified than I was. During the summer between sophomore and junior years, I started a new job at a local department store- and it brought back my anxiety in a tidal wave. The shifts were long, the store was huge, and I was terrified that I would do something wrong and be fired. Living with this constant fear was exhausting, and I felt an odd sense of relief when the summer ended and it was time to go back to school. But the relief didn’t last long. Junior year arrived, and I was stressed to the max. My parents left after move-in day, and I felt so alone. And literally paralyzed with anxiety. The thought of leaving my room at all filled me with immense dread. There was no way I could get through a whole school year like that. So I called my school’s counseling service, and started bimonthly appointments with a great counselor. Along the way,I realized I just wasn’t happy- being anxious was serving me absolutely no purpose. What’s the worst that would happen if I tried something new? I ended my two and a half year relationship that was, admittedly, making me more stressed than happy. I hung out with friends more, and realized I’d been neglecting friendships for my relationship (a mistake I will not make again). I tried a hip-hop dance class at the gym, and loved it. (I’m not half bad, in my opinion. Who knew?) I replaced my grey and black wardrobe with bright colors and patterns. I tried makeup. I went to a college party. I got a job as a research assistant, and balanced that on top of classes, club meetings, peer advising, and consistently going to the gym. When I got home for the summer, I accepted extra shifts left and right at work (my bank account thanks me for this). I enrolled in an ONLINE class in BIOLOGY of all things, and just finished my last assignment with a fantastic average. I have my sights set on nursing school (with all of that hard science) so that I can work with kids with diabetes one day. I’m getting ready to move into my first apartment with one of my best friends in a few weeks. And NONE of this was in my life plan up until a few months ago. The moral of the story? Don’t plan out your life too carefully. Having plans is great, but so is exploring. That’s what being a young adult is all about. Knowing exactly what you want to do and who you want to be in your life at 18 is great, but don’t be scared of change- it’s an adventure. Your future never has to be set in stone. My freshman self saw college as a means to an end: I’ve learned since then that college and young adulthood are a period of self-discovery, and that staying exactly the same may not be such a great thing after all. Learning how to live your life, be flexible, try new things, adapt to change- all of these are great skills that I came very close to missing out on. Best of all, I’ve gained a lot of confidence from this whole process. I’m actually excited to move into my apartment and go back to school, for once. I give myself a lot of credit for managing a chronic disease every day, and managing to do everything I do. I’m not afraid to like the music, or the clothes, or activities that I like. If I’m faced with a challenge, I know I can do my best- and that my best is good enough. Just because it’s scary, doesn’t mean you can’t do it.