I was laughing about the story and explaining why I was deciding to skip the after meeting snacks available at our family group Bible study. Someone there looked at me with deep compassion and said "I am so sorry you have to deal with that."
I believe he really does feel this way. I believe his heart hurts when he sees other people have to deal with difficult things but I hope he understands that I don't talk about my disease in order to garner attention or sympathy. I talk about diabetes and the fight that it is for two reasons. First, it's part of my life. It's what I deal with on a daily basis. I spend more time thinking about blood sugars, what carbohydrates I'm eating and the amount of insulin I'm taking than most people do about their jobs, or the hobby they have that they want to tell everyone about. The second is, I want people to understand what diabetes is. There is so much misinformation and assumption out there. I just want people to know that insulin is not a cure. I want people to understand the delicate balance that all diabetics are trying to achieve, how hard that is and how easy it is to mess it up.
When I was diagnosed at 9 years old they told me, "You can live a normal life, you can be just like everybody else if you take care of yourself." I was taught not to draw attention to my diabetes and to try to blend in with everyone else. The problem is, as.a diabetic you are different. In 1978 there were no home blood glucose test units. I had to go into to the bathroom 2 or 3 times a day to test for sugar in my urine. Try explaining that one to your ten year old friends. I had to learn an exchange list and at birthday parties either skip the cake, cut the icing off the cake or just act like I didn't have diabetes. The third is what I ended up doing most of the time. I was a kid, I wanted cake and I wanted to be just like everyone else.
I remember hiding my insulin syringes while working at a radio station in Joplin Missouri, in the early 90's because I was told the owner had seen me with one and thought I was doing drugs. Working in the restaurant business episodes of low blood sugar were assumed many times to be evidence of drinking or evidence that I was doing something wrong and couldn't be trusted. You try working a lunch shift as your insulin is peaking and you can't stop for a snack.
After an auto accident where another diabetic who was having a low blood sugar episode ran into me while I was sitting at a stop light my own insurance agent said to me. "I don't think those people should be allowed to drive." I didn't mention to him that I was one of "those people"
Until very recently my solution to all of these things was do everything I could to appear normal. Eat the cake, skip afternoon shots so I didn't freak out the station owner, Eat a whole bunch before the lunch rush to avoid the low.
As a diabetic though, I'm not normal. Here are some things to understand about type 1 diabetes as far as I've learned by living it and now wearing this continuous glucose monitor.
- What works today may not work tomorrow: Stress affects how your body deals with sugar and insulin, exercise affects it, insulin absorption rates from the site your pump is in you can affect it. I'm convinced that the synthetic insulin we use these days can come in stronger and weaker batches. I don't have any research to back this up but it would help explain why some days I fight with lows all and others I can't seem to do anything to bring my blood sugar down.
- Many type 1 diabetics have reached a point where they cannot even feel the symptoms of low blood sugar until they are way too far gone. I have my CGM set to warn me when my glucose level drops below 70 (regular blood glucose levels are between 80 and 120) due to watching my CGM and noting when I actually feel bad I know that I don't even start to feel symptoms until I'm near 50
- Low blood sugars are caused by two much insulin in the blood stream and not enough food. This would seem to be fairly simple to avoid but it is not. Exercise will use blood sugar faster. Diabetics can't just jump in to help with a strenuous activity at the last minute without risking low blood sugar. I remember one time at church, the chair team didn't show up to set up the sanctuary. I started setting it up and after a time started to get very angry. I was tossing chairs around and mumbling to myself about these people. I realized that I had to stop because my anger wasn't really about the chairs it was low blood sugar. Please if you know a diabetic don't blame them for low blood sugars. These things come out of nowhere and sometimes we don't even feel them coming.
- People over-react, As a diabetic I'm making decisions on what to eat and how much I can exercise based on what my body is doing right now. The problem I see is that people assume if I say I can't do this right now it means it's bad for me and I can never do it.
- At work recently after a weekend of fighting with highs they had a taco/nacho party. I decided to just eat the lunch I brought because I had carefully measured the carbs in it and wanted to bring blood sugars back to more normal. Everyone wanted to know why I couldn't eat tacos/nachos. It wasn't about the food it was about estimating the carbs in the food.
- After the chair incident at church I mentioned to some people in the men's group about what happened and told them they I thought they should know that if I ever seemed irrationally angry they should ask me if I need to eat something. Some of the guys in the group have taken my story to mean that I shouldn't be putting up chairs, ever. Whenever they see me doing it they tell me to go sit down.
No comments:
Post a Comment