Living with diabetes often feels like a full time job. Without any pay. Or vacation time.
Snacking requires concentration, exercising requires diligence, and going out with friends can be a downright nightmare. Add the novelty (and stress) of university into the mix and it doesn’t take long for management to drop down the priority list.
I’ve been living with diabetes for 18 years, and I’m 21 now. When I first started university, I very quickly became busy meeting new friends (none of whom had diabetes), learning to live in a new city, and trying to keep up with my classes. I was playing intramurals at odd times of the night throughout the week, and using alcohol as a recovery drink most of the time. I didn’t tell anyone that I had diabetes, because it was a pain to explain, and I didn’t want anyone to think I was living within constraints, or living an unhealthy life.
Diabetes management is a lot about pattern, and in university life is far from routine. In my second year my struggle with diabetes management started to show when I started having some really scary lows. I never went unconscious, or had to use glucagon, but I would be so low that I would panic and drink about 6 juice boxes in a row to compensate, and end up at 350-ish after every low. This turned into an intense fear of lows, and I would panic if my blood sugar started to drop below 170 or so. Eventually my mom noticed, and I found Integrated Diabetes.
Integrated Diabetes is a consulting service for people living with diabetes. I worked one-on-one with Jenny, a registered (and licensed) dietician/certified diabetes educator/pump trainer/athlete/type 1 diabetic/mom. Things that changed when I started working with Jenny:
- I was forced to keep a detailed log of carbs, insulin, and exercise because I had to send my record to Jenny every 3 days. This kept me accountable and it was really good to look at and realize “holy shit I haven’t had a number below 10 in 3 days”. Things started to change pretty quickly.
- I started to really understand the relationship between exercise and insulin, and use this to my advantage (think treating stubborn highs with half an hour on the bike, rather than more insulin).
- I learned SO many great carb-counting tricks. Did you know on average one roll of sushi has 7 carbs in it? Did you know that if you eat 30g of protein on its own, half of that is digested as sugar (so you’d bolus as if you’re eating 15g of carb)? Mind blown.
- I learned why alcohol is so dangerous for diabetics, and why I would always wake up low after drinking the night before (and I’ve learned that my boyfriend at the time might have even saved my life a few times simply because he loved ordering pizza to share after a night of drinking).
- I learned that when I’m stressed, my insulin resistance goes through the roof, and I learned to be okay with using a LOT of insulin during those periods of time.
Jenny and I would Skype once a month, and email pretty much every day. I had hundreds of questions for her, and she always had extremely comprehensive answers for me. Like every clinician working for Integrated Diabetes, she lives with diabetes herself, and I think this is what makes Integrated Diabetes so special. You know that moment when you meet another diabetic, and they just get it? Now imagine having an educator working one-on-one with you who also gets it.
My link with Jenny helped me so much when I was having trouble with my diabetes management. Despite the fact that I have lived with and managed diabetes since I was 3 years old I had to come to grips with the fact that I didn’t know everything and I needed help.
It’s a huge change when we transition out of pediatric diabetes care; for most of us the pediatric care is very intense and supportive with endocrinologists, nurses, nutritionists and psychologists (not to mention parents!) looking out for us all the time. When we become adults (about the same time that most of us are going away from home to go to university); we seem to be floundering with not nearly the level of diabetes management support that we need. It’s tough to know where to turn to.
Meeting Jenny was the beginning of another transition for me, from floundering with diabetes to feeling like I can use my experience to inspire and help others who are also struggling. I’ve recently become involved with an organization called AYUDA where I’ve met a lot of vibrant young adults with diabetes; and of course, connecting with other college students through the college diabetes network who are having similar experiences. Nice to know that we are not alone.