Tonight, while changing my daughter’s insulin pod and continuous glucose monitor (CGM) sensor, I found myself in tears. Changing pods and sensors are regular occurrences in the life of a type 1 diabetic. Lily’s insulin pod must be changed every three days and her CGM sensor every ten days. I have made these changes every three and ten days for the last 8.5 years. These changes are such a regular occurrence that I can practically do them with my eyes closed. It normally takes me less than 5 minutes to change her insulin pod, and less than 3 to change her CGM sensor. Tonight, however, was a different story.
Lily likes to shower or bathe before changing her pod or CGM because it loosens the adhesive, making it less painful to remove the old pod or CGM sensor. Like other nights, Lily decided to shower before the pod and CGM sensor changes. Unlike other nights, Lily decided to lotion herself up because she suffers from a condition known as chicken skin, which can cause extremely bumpy and itchy skin. Tonight, apparently it was particularly bothersome. It wasn’t until I cleaned her insertion sight, that I realized how greasy her skin was. So greasy that not even an alcohol swab was able to remove the lotion from her skin. I had already gone through the process of prepping and priming the pod, and though I knew her skin was greasier than normal, I prayed that the pod would stick. Immediately upon application I realized that it was not going to stick, and I must repeat the whole process again, after Lily showered for a second time. This realization brought tears of frustration and anger to my eyes.
I did not at first recognize where these emotions were coming from. It isn’t as if we haven’t run into snafus while changing pods and sensors in the past, but then I realized that was exactly why I was feeling frustrated and angry. Because nothing, I mean absolutely NOTHING about this disease is easy. I have read about diabetes burnout, and have at times, felt the inklings of it. However, tonight it seemed to hit me full force. The troubles we experienced changing the pod and sensor were just the straws that broke the camel’s back.
For months we have been dealing with unsteady blood glucose numbers. Lily is high. Lily is low. Lily is really high. Lily is really low. There has been very little consistency and the stress that comes with these highs and lows has, I realized, been troubling me for a while. I have tried contacting the doctor to make adjustments and he has not been responding to my emails, only exacerbating my frustration and leaving me to try and figure out what adjustments need to be made where in order to help regulate her blood glucose. I am also the first point of contact for the school nurse because I am available and knowledgeable. The nurse can call anywhere between 1-4 times on any given day, leaving me on edge each and every time I hear the phone ring. Most times the nurse has a simple question, but I dread the day I get a phone call that Lily has passed out from an extreme low. My nerves are shot, and diabetes is to blame.
There is a plethora of research out there on diabetes burnout. “Diabetes burnout refers to a state of feeling overwhelmed, exhausted, and disillusioned stemming from living with and managing diabetes.” Diabetes burnout can affect both those living with diabetes and caretakers of those with diabetes. Tonight, I felt both emotionally overwhelmed and emotionally exhausted. Despite these feelings, I won’t quit. I won’t quit fighting for Lily’s physical and emotional health and well-being. I won’t quit searching for answers to perplexing questions. I won’t quit bugging her doctors for information that will make her life easier. I can’t quit because her life literally depends upon my diligence.
