This morning I woke up to my insulin pump beeping at me. It was telling me that is was time for a change. The beeping was to tell me that my pod was out of insulin and that I needed to put on a new one. But I needed a different kind of change.
I went for a morning run with my roommate and decided to just take my pod totally off and run without it. I set my temp basal rate to 0% when I exercise anyway so I don’t bottom out mid workout. When I got back from the run and was getting ready for the day, I simply had no desire to activate a new one and put it on. So I just didn’t. I grabbed a vial of Lantus and Novolog out of the fridge and some syringes out of my cupboard and went back to the old vial and needle method.
Most people say that having a pump means more freedom and more control. More control is absolutely right. My A1C is down to 6.6% which I’m very happy about. The freedom part however; that’s a bit more subjective. There is freedom in not having to take shot several times a day, not having to draw up insulin into a syringe, and not having to do all the calculations yourself. But being attached to a machine 24/7 sometimes does not feel freeing at all. It sometimes feels intrusive, violating, and burdensome.
I hate having a bump under my dress on my abdomen. I hate having to be careful of my pod when I put on a pair of pants. I hate having to plan ahead and pack extra pods when I travel (although, there’s not getting rid of having to be well prepared when you have diabetes). I think it’s safe to say that after 2 plus years of having diabetes, I’m starting to feel a bit of the burnout everyone always talks about.
This morning, my boss showed us a Stop Diabetes PSA put out by the American Diabetes Association that gave me goosebumps and resonated with me more than any other diabetes PSA had. It talked about believing that one day there will be joy without limitations, days with schedules, life without diabetes. Instead of riding or walking in the Tour de Cure or Step Out Walk, we’ll be riding a victory lap and walking in a victory parade. Someday, the vastly expanding number of Americans will be at high risk of developing…nothing. Diabetes won’t exist.
But today, today I wish diabetes didn’t exist. I wish I didn’t have to wear a pump. I wish the alternative was something much better than giving myself 5 shots a day, 5 pricks to the finger a day, blood sugars that are all over the map, and a tired body and mind from all the ups and downs. What kind of break/alternative is that anyway? I wish “one day…” was today.
You’re not alone.
My D never bothered me when I was diagnosed…I mean, sure I was bummed but I was relieved that I had an answer to my symptoms and that I really wasn’t losing my mind or morphing into some kind of depressed, exhausted fish.
But, that excitement and relief only lasted for about 6 weeks. That was over two years ago. Today, I loathe my D, I hate everything about it. I hate my pump, I hate shots, I hate being sick and weak all the time, I hate feeling like I’m constantly losing a battle for my health, but most of all, I hate that no one understands. No one understands how much “today” sucks, how much dealing with and accepting this f****ing disease messes with your life, not only do does anyone not understand, they really don’t care.
I wish, for a least a week people that ridicule me, and make fun of me and ask stupid questions and spread stupid rumors would have to feel what high and low and all the disgusting care in between feels like.
Because, I hate that I can’t remember what it feels like to be healthy.