Type 1 Diabetes: Choosing To Be Free

I make a conscious choice every day to be happy, grateful, and always wear a smile, but what about the darker days? The days where I hide myself away, thinking gloomy thoughts and dimming my normally bright light? I can get so frustrated at and overwhelmed by the world sometimes, secondary to living a life with a “broken” pancreas and a fear that has begun to manifest and consume me. Fear is controlling in all of us, if we let it. I don’t want to let fear control me anymore. When I was a little girl and had to change my insulin pump infusion sites (usually every 3–5 days), my dad would always whisper to me: “Be brave, Cal.” So where did that bravery go? Why have I let fear take over and sit at the forefront of my thoughts, effecting the very way I manage my type 1 diabetes?

I generally believe that I am pretty successful in all aspects of my life — I work hard in school, I am involved on my college campus and in my community, I am surrounded by wonderful family and friends, I dream big, and I take steps to achieve those big dreams. So why is it that I suffer from high blood sugar so often? The management of type 1 diabetes, or any chronic disease, is not something one can approach passively. It takes consistency, awareness, planning, preparation, and adaptability. It takes patience, kindness towards one self, and a willingness to accept the bad days, as well as celebrating the good ones.

I want to address that fear though. I have denied the presence of it for a while, hoping things will magically get better, but I can no longer sit back and treat my condition so passively, mildly, ignorantly. I am afraid. Living with type 1 diabetes is scary, and it takes a special kind of bravery to face T1D head on: Every second of every day of every passing year, sunrise to sunset, and all through the night, type 1 diabetes is there on my mind. As much as I’ve let it consume me for a while, it’s time for me to get back on the offensive and take back my control.

I am irrationally afraid of having low blood sugar and going low to the point of passing out. I fear the feelings that hypoglycemia brings: Lethargy, weakness, not being able to focus or concentrate on anything (even right in front of me), shakiness, dizziness, blurry vision, etc. Is low blood sugar an uncomfortable feeling? Definitely, yes. Is it a temporary, manageable state? Also, yes. I have been giving into fear so often now, that my mind fears the very possibility of experiencing a hypoglycemic event. It sometimes means less insulin for meals, an excessive use of temporary basal rates, “forgetting” to bolus for my meals, having a snack before bed to make sure my sugars stay “stable”(high) throughout the night — the sloppy habits go on. I make excuses like, “I just can’t afford to go low right now, I’m on my way to class”, even if I am nowhere near hypoglycemia. Excuses are made, and I play it safe. I play it so safe and so passively that it becomes detrimental; all because I am afraid of a “what-if”.

This fear plagues my thoughts, always in the back of my mind. That fear whispers to me at eight in the morning before leaving for class, to make sure I have enough snacks in my bag, or at five in the evening to take 3 units of insulin for dinner instead of 4.5 units. I battle inwardly with myself constantly these days. The worst part is knowing how wrong it is. I know it is wrong. I know it is only hurting me. I know I have to do better. I know.

What do you do when you are your own worst enemy? This is one of the loneliest, most hopeless feelings in the world.

Here: Just take more insulin, just be more aggressive, just stop overthinking. These are the obvious answers, but all can be so much easier said than done when bad habits have been formed. One night before bed I took off my insulin pump to take a shower, and afterwards forgot to put it back on. I was so tired and sick feeling that I just went straight to bed; I didn’t even brush my teeth.

I awoke around 6 in the morning, before my alarm went off and felt nauseous. My mouth felt sticky and dry, my stomach was churning, and my head was pounding. I rolled over and grabbed my testing kit and was horrified to see my pump next to my kit. I knew I was high and that I was probably spilling ketones, entering diabetic ketoacidosis (DKA). Sure enough, my blood sugar was over 500 mg/dL. I immediately put my pump back on, made a correction, went over to the bathroom sink in tears and splashed water on my face, and stumbled downstairs to make myself a glass of ice-cold lemon water to flush the ketones from my system. This fear had gone too far. I was at my end. Right then and there, I vowed that change was going to come, and I would never treat my body so recklessly and irresponsibly again. This was only a few days ago. It is time to break through my mental barrier and face this fear head on.

I am sick and tired of feeling sick and tired. I have to be selfish for myself again, advocating for myself, taking back control, being aggressive, loving myself, being kind to myself, and being fearless. All. The. Time. I have to, and I know that. I have to actively, consciously think this way until a new habit forms. Food and insulin are not my enemies, but they are my friends.

Every day is a new day, and I must pace myself. Even when the fear whispers to stop, and even when the fear whispers to give in, I have to keep trying and keep pushing through it. FEAR, simply, stands for: Forget Everything And Run, or Face Everything And Rise. I am facing my fear, bolusing proper amounts of insulin for my meals and, when I start to feel afraid, testing my blood sugar and being extra vigilant to reassure myself that I am okay. One day I hope the whispers will stop, but until they do I have to continue fighting for myself, on top of living my life and being your “every day college student”. Those who live with a chronic condition know this is not easy, but nothing worth fighting for is ever easy.

I will no longer pity or feel sorry for myself. The reality is, I experienced a life-altering autoimmune event where my T-lymphocytes falsely recognized my insulin-making ß-islet cells in my pancreas as foreign, attacking and destroying them. This lead up to receiving a diagnosis of type 1 diabetes mellitus when I was in 3rd grade, a 9 year old little girl, from a small town in Illinois, on March 25, 2005. Type 1 Diabetes can be a real bummer, and yes I can sit around comparing myself to others, feeling jealous, or bitter, or sad, or self-loathing. “Everyone around me has a working body, and they do not even think twice about what they eat.” Well, what does this do? These types of thoughts are not nice, and they only hurt myself.

My body works too, and it is not a burden. My feet allow me to walk on planet Earth, my hands allow me to write, and paint, and play the saxophone, my arms allow me to hug my mom and dad and brothers, and my eyes allow me to see all the beauty that this life has to offer. I should be proud to be who I am, to be different. A good friend once told me that Type 1 Diabetes, in a very strange way of thinking, is an asset. I am more in tune with my body than most people are with their own, I understand nutrition, carbohydrates, and metabolism more than most people, I understand the science, anatomy, and physiology behind endocrine systems more than most people, and I always, always, ALWAYS have a juice box or a granola bar if somebody should happen to need one.

Diabetes is only a part of my story. It doesn’t define me, or my life story, and I am taking back control. My body is mine, and mine alone, because this is the only one I will ever get. It is strong, and loving, and creative, and kind, and fearless. I am strong, and loving, and creative, and kind, and fearless.

There will be days ahead where diabetes will continue to test me, but a cheesy quote once told me that if you get tired, learn to rest, not to quit. And just as I ace my organic chemistry tests, I will ace these tests too, and always strive to come out on top.

I am grateful every day. On the darker days, when it can be harder to see the light, I choose to still be grateful deep down. I read what I wrote often, as a reminder for me to choose the strength I know I have, even on my weakest day. There are positive things happening every day, and new habits forming. I am grateful every day.