It has been nearly 11 years since T1D has made its way into my life. Like most others, I went through the typical stages after diagnosis: fear, eagerness to learn, frustration, denial, avoidance, and finally acceptance. I don’t think the stages necessarily follow this exact order, or that one cannot retreat into darkness after acceptance. Life with the D is hard.
There are a few things I have learned along the way that I wish I would have known or done since day one. Here’s my condensed list, in no particular order:
- Keep a food – insulin log book. The app MySugr makes it really easy and convenient in order to stay on track. Why keep a log book? It makes it much easier to spot trends and notice what foods might cause problems, or maybe you realize next time you need more/less insulin. It helps keep a bit of guessing out of the big game.
- See a diabetic specialist: an endocrinologist. We are living with such a complicated and highly misunderstood disease, which means quite a lot of family doctors do not understand the complexities or are not up-to-date on technology/drug enhancements.
- Connect with other Type 1s. If you’re reading this, you’re probably already a zillion steps ahead of me when I was diagnosed. I didn’t know anyone with T1 for about the first 5 or 6 years of living with it. The D is alienating and it is much easier to live with when you don’t feel alone.
- Share your fears and celebrations with others, T1Ds or not. I feel much more understood and accepted when I open up about my D and how it is particularly effecting me on certain occasions. It’s important that others are aware of what we are going through, and that others can be there when we need help. For example: I am the biggest B word when my BGs are high. When I tell my husband that I’m running higher, he then understands why and isn’t so upset!
- Don’t beat yourself up. This one is hard. We all do it. It’s so easy to imagine your life success based on the blood sugars of any particular day. It is literally like a roller coaster. One high followed by a deeply sinking low. As the famous saying in the T1D community goes: you are greater than the highs and lows.
How long have you been living with the D? What are some things you wish you would have known since the beginning?