5 Things I Have Learned About Life With Type One Diabetes
It is my Diaversary! Today marks the start of my 14th year living with type one diabetes, and I felt that it deserved a blog post.
I was 17, and was having the most severe leg cramps to the point that it was hard for me to walk up 2 flights of stairs to my classes, I would wake up in the middle of the night, walk around for 30 minutes and not be able to get rid of these horrible leg cramps. Track season was just around the corner and I was so worried if I couldn’t walk up a flight of stairs how was I going to compete for my senior year. Finally I fell to the ground in pain crying to my mom about how bad it hurt, and knowing my high pain tolerance she immediately called my doctor and got me an appointment the following day. I went in for blood work and then we went to breakfast since I had been fasting. I remember that meal so well - we went to IHOP, I had chocolate chip pancakes with as much butter pecan syrup as I wanted (what a final “last non-diabetic meal huh?!). I went to school, my mom called in and said that I needed to head home right after school. When I got home she told me that my blood work had come back and that we needed to go to Children’s Hospital in Seattle where we would be spending the next 3 days learning all about how to manage my diagnosis of type one diabetes.
I knew nothing about type one diabetes, I was the first person in my family to have it so there was no way that we would have known that was what was going on with me. Looking back now, my mom and I were both shocked after those pancakes and no insulin that I was only at 217 when I was admitted, but I had an A1c of 14, more than double what a normal healthy non diabetic person would be at.
Over the next three days I learned how to inject insulin, watched my parents both have to practice on themselves to learn how which was probably one of the more comical moments in our time there, dad stabbed himself super hard and mom felt faint ;). I learned how to count carbs, how to check my blood sugar and what to do to treat lows. I was in a children’s hospital, so there were little kids around with cancer and other terminal illnesses, and at that point I saw this disease as an “it could be worse” situation, which really became my coping mechanism for years to come. I also was in a way grateful that at least diabetes was something that wasn’t visible to the outside world unless I told them which as a teenager was important to me.
At the end of the three days we left on a Sunday and I went back to school the following week, as I was captain of the track team and we happened to be starting the season that week I did not want to miss it. At the time, the insulin I was taking I had to be very specific with the amount of carbs I ate at each meal, my mom would pack my lunch everyday making sure I had the exact amount of food I needed, I had to explain to my friends I could no longer share, they could not just reach over and grab whatever they wanted anymore, and I had to finish all of my food even if I was full. When I went out to my favorite Mexican restaurant my dad would count out the number of tortilla chips I was allowed to have in that meal. Needless to say I am so grateful to have a much more flexible eating schedule and type of insulin now! Two weeks into my new type one life, our track coach surprised us with Krispy Kreme donuts after practice, and that was the first time that it really hit me that something was different in my life. I couldn’t just dig in to donuts with the rest of my friends on the team and instead had to say no I can’t, and in my mind it was like man, two weeks ago I could have eaten these like normal with my friends, and that feeling was absolutely devastating.
Fast forward to 2019- I am over 35,000 injections in to this, and I have learned so much in this battle. Now that you have seen my diagnosis story, instead of explaining the last 14 years, I want to share the top 5 things I have learned.
1 - You have to advocate for yourself. As I mentioned, one of the things I found appealing about diabetes is that it was an invisible disease, so I only had to tell the people that I wanted to know that I was diabetic. The problem with invisible diseases is that people who are not going through the same thing have no idea how you feel, or what is going on internally. I learned that when I am low, I have to get some juice or food to bring my blood sugar back to a safe level. I learned that when I have a teacher that does not let us eat for a 6 hour lab course that I have to tell them that it is unacceptable. I learned that when I am not feeling well that I need to stand firm and take care of me. You are your biggest advocate, so to take the best care of yourself you have to stand your ground and do what is right for you and your body.
2 - Dating can be super awkward. I remember one time after a date, the guy was sitting on my couch in San Francisco and said “cool…a shelf of needles…” when looking at one of the bookcases in my studio apartment, which happened to be where I kept my medical supplies since my bathroom did not have any storage. I had to explain that no I am not a drug addict, but that I am a type one diabetic. That was the last time I saw that person. Luckily my serious relationships all were accepting and curious about my diabetes, learning what to do if I went low, how to help me when I was sick, and how insulin injections work as well as what blood sugar readings meant. Type one diabetes is not for the faint of heart, and you should never feel that you have to hide it from your partner. They should love all of you, even the not so fun parts like insulin injections and diabetic complications. Do not settle for someone who is creeped out by it / afraid of needles / thinks less of your because of a chronic illness that you did not ask for.
3- Only you can take care of you. This one took me longer to realize than I wish it had. The thing about doctors is they can advise you on what to eat, when to eat, when to take insulin, when to check your blood sugar, and what A1c is ideal but they can’t make you do those things and they certainly can’t make sure that you are hitting those targets. I have always been insulin resistant and because of this, I have always ran higher than I should be. My doctor in Seattle liked to use scare tactics to try and scare me into taking more insulin and checking my blood sugar more often, which in reality I was taking the amount I was told to, and I was checking when I was told to. It took until I moved to Ireland and worked with a doctor that actually finally believed me to look into my insulin resistance and through blood work found that my body has become immune to the insulin I was using, which was why all these years it has not really been working for me! So while you are the only person who can physically do all of the things necessary to achieve your diabetic control, if something is not working go back to step one of advocating for yourself. Do not wait, the sooner you can get good control the better, and the sooner you find a good doctor that wants to work with you the better!
4 - Keep a food journal. I know food journals can be super annoying and time consuming, but after 13 years of unknown reasons for highs or lows from my food, I started working with my natural doctor on what food choices I should be making. We started in a few months ago on this project, I record my meals as well as my blood sugar numbers before the meal, one hour after and 2 hours after each meal. Journaling this way has helped me so much with understanding what foods work for me, and what foods I should avoid! I am eternally grateful to her for showing me these techniques as well as her knowledge on foods that I should try to help manage the issues that have now come up with my vision. Even if you are not working with a doctor on it, do this experiment for yourself and see what foods work best for your body. The thing about food that I have found with my diabetic journey is that different foods will have different affects on everyone, so there is not a one size fits all in this situation and the best way to find what works for you is to track it. I have created a template for the food journal I use to track my food, the best part is you can open it up on your computer with adobe reader and fill it in on the computer! You can grab it for free here.
5 - Even when it doesn’t feel like it, you can do this. There are days when my blood sugar is high or that my glucose monitor literally looks like a roller coaster. There are days when I just want to eat whatever I want without needing a shot. There are days when I feel sick, but cannot convey what is actually wrong, but just feel that something is off. There are days that I feel completely alone in this, and that no one understands what I am going through. There are days that I wonder why this happened to me. There are days that I wonder if I did things differently earlier if I would be having the complications I now have. There are days I want to sit and yell and scream and there are days that I want to throw my blood sugar checker and insulin against the wall. The thing that gets me through these bad times is knowing that by doing my best I am going to feel my best. Accepting these feelings and remembering that every step I take big or small towards living a healthier life will help me get through this. I pushed these feelings away for so long as a coping mechanism that when I finally let it all sync in years later and I mean YEARS later, I have learned that it is normal to be bummed out by this sometimes, but that only I can pick myself back up and the sooner I do, the sooner I will feel like I can control this.
I hope that reading this inspires you to take control of your health. Whether you are a type one diabetic, living with another chronic illness or are healthy, I hope that you learned something from my journey so far. Here is to 14 years of T1D life, and many more healthy years to come.