A Journey Within: Describe The Road You Are Currently Traveling

    This road I travel is often bumpy and rocky. I frequently find myself wrong footed, twisting an ankle here, tweaking my back there. Some days the road is highly visible under clear skies, making it easier to traverse despite the challenging conditions. Other days the road is shrouded in fog and I stumble along not knowing which direction I am headed. Sometimes I crawl on hands and knees groping for a helping hand. Sunshine is often followed by rain, hail, and wind. However, the sun inevitably shines again, bringing with it clarity. Unfortunately, the cycle of sun, rain, hail, and wind is never ending, and the clarity is fleeting. It is a long and twisted road. Traversing this road often leaves me mentally, emotionally, and physically exhausted, bruised, and battered. Sometimes I grieve my inability to see the end.

A Journey Within

    About 3 months ago, while perusing our local bookstore, I came across a journal titled “A Journey Within: An Introspective Activity Journal To Help You Get To Know Yourself Better”. Each page of the journal asks a question meant to help you examine yourself and your life. When I purchased the journal, I set myself the goal of answering one question a day, not only in an attempt to keep up my writing, but also in an attempt to better know my wants, needs, desires, and passions.  I hoped that by filling out a page a day I could enact necessary changes to reduce my anxiety and depression. Since purchasing the journal three months ago, I have answered one question. Filled out one page. I have picked the journal up several times over the past three months, flipped through the pages, browsed and pondered the questions, and ultimately closed the journal without adding any thoughts. Tonight, with a burning desire to write, I picked up the journal again with the intention of answering another question. However, none of the questions produced answers. I felt stuck. Instead, I picked up my computer and began this piece as an explanation of my current goal; to write answers to the questions in my journal and to publish them on my blog. I hope that in doing so I can not only share the gunk inside my brain (the whole purpose of my blog), but also motivate myself to actively engage with my journal in a positive and productive manner. 

The Reality of Diabetes Burnout

     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.