What does living with diabetes mean? How do you explain it to someone that doesn’t get it? How do you convey the seriousness of it when your child LOOKS healthy, acts fine, and the rest of the world would have you believe it is easily cured/fixed?
My daughter has an incurable disease. It is the 6th leading cause of death. And if you include “complications due to diabetes” it becomes third. The very medicine that is required for the diabetic to live, can also potentially kill them if given improperly. The common cold for us is a day or 2 off from work. For the diabetic it often means 4 days in the hospital. Low blood sugar is dangerous and potentially life threatening immediately. High blood sugar does damage to just about every bodily system over time. We battle to stay in between all day. Every day.
There is no such thing as a “repeatable outcome”. Same thing every day often produces radically different outcomes. Weather, stress, exercise, joy, excitement, growth, hormones, and EVERY. OTHER. POSSIBLE. THING. can cause changes to blood sugar. While most parents most relaxing part of their day is after they put their children to bed, the type 1 parents most stressful and worrisome part of their day starts.
The frustration of realizing that most general medical practitioners know less than a type 1 about diabetes causes stress and creates issues, occasionally leading to a misdiagnosis and death. Knowing that a simple 5 second, $1.50 BG test could prevent that is a source of constant frustration. The constant barrage of people offering up cures and telling you how to fix it due to misunderstood, confused, and sometimes ignorant ideas of what diabetes is, often times leads to an awful need to scream at the op of your lungs.
Diabetes infiltrates lives in every possible way imaginable. It is a factor in just about every single decision made through out the day. It limits spontaneity, constantly requiring planning. Little surprises are no longer welcomed or “thoughtful”, they lead to stress and often feeling like a bad parent. School parties, birthday parties, grandmas homemade apple pie, they all become the bane of your existence.
Having to do math. Even at 2:14 in the morning.
You know that feeling when you wake up and realize your slept through your alarm, and now your late for work? Imagine having that in addition to realizing you slept through checking your child’s blood sugar after falling asleep while treating a low, and now worrying whether or not when you go in there she is still breathing.
Yeah. It’s like that.
This doesn’t even really scratch the surface. Sometimes it’s just easier to say diabetes sucks. We need a cure.