We forget how much diabetes is such a silent illness. Twenty-four hours a day and seven days a week we think, think, and think again. Did we count the right carbs? Should I have taken the subway instead of walking to prevent that low? Should I not have had that extra chocolate kiss at the holiday party? The worry goes away during this trial, well, for the most part.
I have an extra pump with extra tubing and a nurse following me around like a hawk with an iPhone that triggers an alarm when its time to check my blood sugar. The lack of worry I have is amazing. My brain is free. I often wonder how many times my blood sugar rises just because I’m worried, and that worry is most often about diabetes.
Why am I high? Didn’t I wait long enough before I ate? I should have measured that cereal? Did I re-hook my pump before leaving for work? I realized how lonely of an illness is because we don’t usually share our every waking thought with the world around us (okay, maybe now that Facebook and Twitter have come into play I should reconsider that sentence). I think part of the problem of why type I diabetes receives less than 1/4 of the funding that cancer does is because “we don’t look sick.”
But what is sick?
My blood sugar could go from 80 to 280 and back down to 60 in two hours if I forget to do one little task or decide not to because it interferes with my life. Or is it the pressure of wanting to be “normal” most of the time.
My boyfriend said it to me the other day, “I know how hard this is when I wake up, because when I start to think about my day, I just get up and just go take a shower. When you wake up its what is my blood sugar? Why is it low? Where is the closest juice box? You can’t go running with your friend because you won’t be high enough to do that to prevent a future low. You need to remember to grab a new bottle of test strips to have at work, or call the PCP to get a referral to see an Ophthalmologist to get your eyes dilated and the list goes on.”
The thoughts that go on inside our heads are insane. I was recently told that people with type 1 make over 350 decisions a day regarding their diabetes…crazy! When I speak to parent groups I like to tell them to compare the feeling of having diabetes to that moment you’re about to step on the scale at the doctor’s office, yet, that feeling never goes away.
I took a little break before typing this next paragraph because I was looking at my bionic pancreas mesmerized by the fact that my blood sugar has been reading in the 70s and 80s for the past several hours. One of the questions people have asked the most over the last five days is, “How are you feeling?”
I feel amazing! I have not had one symptom of low blood sugar in 5 days.
If you look on the graph in the picture above you’ll see that, as I started to dip, red bar graph lines indicating a tiny bit of glucagon was delivered through the pump start to appear. That’s why I didn’t go low. That lack of worry is gone. I can trust it and it works.
It is interesting because now that people can see that I “look sick,” am constrained by an IV at night, and have a nurse attached to my hip is the time when they start asking if I feel okay. In reality it’s the best I’ve felt for the last 24 years. I can honestly say, at least 2/3 of the time, I feel like crap whether my blood sugar is rising or falling. A low blood sugar feels horrible. I’m shaky, weak, sweaty, and cranky, the list goes on and on. The after effects can last for hours and I can feel not only guilty that I can’t wrap my head around the cause of this low, but also feel guilty for interrupting an activity during a busy day.
Please continue to ask your family and friends how they feel. It matters. You’ll be surprised as to what they say. I will tell you though, that with this new device I have no worry when I exercise or even just walk up the street to CVS. I know that I can trust this, I’m not worried, and it feels awesome to be able to say that.
Continue Reading her Journey Day 5