More of the T1D You Don't See

To go along with pictures I posted to Facebook recently for JDRF’s #T1DYouDontSee campaign, I put together a list of some of the other things that most people don’t see about Type 1 Diabetes.  I have little doubt this list is incomplete but it’s not bad.  And so, here are my things about T1 that most people don’t see: 

• Waking up in the middle of the night sweating and shaking from low blood sugar, wondering how bad things are and how long you’ll be up this time.
•  Finger pokes that turn into geysers and the blood spatter evidence of an assault they leave behind.  Evidence on my clothes, on my furniture, and one time…somewhere in the Planet Fitness locker room.  I really couldn’t figure out where my blood went!
• Stares from curious people watching sugar checks and insulin injections who are nosy enough to watch but not comfortable enough to ask.
• Math followed by more math.  What is my blood sugar, what and when did I eat last, how much insulin is already working in my blood stream, what am I about to eat, how many carbs am I eating, how much protein am I eating, what time am I going to the gym, where do I want my blood sugar to be in an hour, 2 hours, 3 hours, how much insulin do I need to take to try to get me there?
• Spending 3 to 4 hours every weekend cooking because life is easier when you know exactly what went into every meal.
• Wondering where the chef in a restaurant hid the sugar in dinner that led to a 250 BG.  Especially when all you ate was a plate of meat.
• The absolute horror when your doctor suggests he’d like your sugar to be higher on average, because he’d feel like you’re safer that way.  No, no, no.
• The joy of feeling like you pulled “it” off…whether “it” is a new best A1c, a new low carb recipe, dosing well for Chinese food, or a precise recovery from an unexpected high or low.
• How amazing it is to have people that love you enough to accept the 2 AM CGM alarms that keep you safe…even when sometimes those alarms are false.

What you don’t see is how much time, thought and energy go into trying to not just to stay alive, but to live well.  T1D has become my way of life, but that doesn’t mean it’s the life I’d choose.  We need a cure.