Sunday, June 4, 2017

CGMs, Logging, and Too Much Information

I wrote this a long time ago; like almost a year ago. Since then, I've been diagnosed with anxiety and depression which explains a lot that's going on in this post. I'm still publishing this without any edits from the last time I worked on because while I know there are so many benefits of CGMs, I also feel that it's important to talk about the negatives, so everyone with or without diabetes can understand the big picture; so people remember that CGMs, pumps, and logging still aren't a cure. They can cause issues on their own. Mindy also has a ton of great posts about issues with CGMs, similar to mine, so I urge you to read her posts, as well.

via Beyond Type 1

If you know me well, you probably know that I can get a little obsessive and I am quite the perfectionist at points. I'm pretty Type A. (I have a planner with 17 check boxes for each day that I can write in things down to the hour in, if that tells you anything.) Naturally, this can translate into my diabetes self-care. I never really realized I had a problem with it; I always thought that feeling burned out after a few weeks of writing down every blood sugar, every food I ate, how much insulin I gave myself, and checking my CGM many times an hour to watch for spikes (and obsessing over when I spiked below the yellow line) was just proof that I'm pretty much a failure and trying to make fine-tuned adjustments to get my A1C down to below 7 was a useless measure. That sounds dramatic, but it was honestly and truly how I felt.

It took about two years for me to even realize that my methods of logging and meticulous attention to every blood sugar that my CGM supplied to me was a problem. The first hint that this wasn't exactly normal was when during my first year as a CIT at camp, my clinician told me after seeing my logs for multiple that I didn't need to test my blood as much because camp was a time to relax on my diabetes management. I, of course, brushed it off and told him that I was fine testing more often because it made my blood sugars better. I also got compliments later that week about how good my blood sugars had been. I got home and told this story and honestly felt proud that I was supposedly "testing too much," since, after all, I did have some of the best blood sugars out of all the CITs. (Of course, they were also having a much more fun and relaxed week, which I would much have preferred looking back.)

I'm pretty sure my obsession with numbers began to manifest when I got my CGM. I loved the data and all the numbers it could give me, so naturally I took advantage of it and checked my blood sugar as much as possible on my CGM. I got my first CGM halfway through my freshman year of high school, which was about a year and a half after I had struggled with my own obsessions with wanting to be skinny, which lead to unhealthily dieting and counting calories in an attempt to lose weight. This gave me a sense of control over my life that I desperately wanted; getting a CGM also gave me a sense of control over my blood sugars, and therefore my life. Naturally I had to do all that I could to ensure that all 288 readings on my CGM were in between the lines. Looking back on it now, I didn't realize that this want to keep my blood sugars perfect all the time was particularly unhealthy. After all, who doesn't want to keep their blood sugars perfect 24/7?

My second realization of this lack of normality in my personal view of my CGM graph and logging strategies came at camp again, a little more than a year later. I ended my last summer before college at Camp Kudzu and was already a little exhausted by this point. I had just been traveling the week before and camp is also pretty fun, but pretty exhausting. On top of that I was stressing because I've always felt like I've been the odd one out amongst the CITs, so I was feeling left out (to no fault of theirs, I'm just not good friends with most of the girls because we didn't all go to the same sessions every year growing up) and the cabin I was working with for the week was also causing me a lot of stress. Add exhaustion, plenty of stress, and a lack of sleep due to my blood sugar going low almost every night until 1 or 2 am and you will get the perfect storm for a CGM induced breakdown from me.

I had my CGM with me at camp because I have always hated having to take my CGM off. Whenever I would run out of sites or my battery would die, I would constantly test my blood (until it got exhausting for me) because I was sure I was missing some low or high blood sugar that my CGM would have told me about. Having my CGM at camp made all of the crazy blood sugars that come along with suddenly being put in a very different environment for an entire week all the more visible and obvious to me. As a CIT 2 I was allowed to, for the most part, do all of my insulin dosing, blood testing, and typical camp diabetes care, as long as I checked in with my clinician in the morning and at night during the CIT meeting.

During our Tuesday night meeting, that perfect storm I mentioned earlier took place. I was exhausted after a stressful day of being at camp and my blood sugars kept going low for a long time, spiking up to the mid 200s then dropping back down and staying low. As I was showing my graph to my clinician, I began crying out of frustration. Seeing the graph go up and 3 or 4 times, despite my best efforts to stay around 100 was making me incredibly angry at myself for not being good enough to at least be flatlining. I was already making my clinicians a little annoyed because I was purposely running my blood sugars lower than what camp wanted me to be at (I was staying between 80-100, while camp wants 120+) and I think at this point they realized what was going on before I even did.

My clinicians promptly told me that they were taking away my receiver from me because I was having an information overload. They gave it to the head staff that stayed with CITs in our cabin and told me to take a break. Naturally, I did not want this to happen at all, as my CGM is my security blanket of control over my made up ideal of being able to achieve perfect blood sugars.

After not looking at my CGM for what seemed like a lifetime, (which in reality was less than 12 hours) I was given it back the next morning after promising to only check my CGM once per hour. This was an incredibly difficult challenge for me, as I was so used to checking my CGM every 10 or 15 minutes, but I did make it through. I began by choosing my one glance per hour carefully, in an attempt to get the most out of that one check. As the hours and rest of my week at camp went on, I began to realize that I had stopped checking my CGM and hadn't even noticed it. My blood sugars were a little higher than what I wanted them to be, but I wasn't spiking as much because I wasn't micromanaging my blood sugars every five minutes.

A few days later, I talked with Mindy about my CGM issues and what had happened and logging came up and I admitted that logging has always been an issue for me and she told me it was for her, too; in fact, she doesn't even log anymore because it has a similar effect on her as it does me. I was shocked and relieved to find out that I wasn't the only one that had issues like these. She also talked with me about my CGM and asked me a question I haven't quite got around to dealing with yet: does your doctor know about your relationship with your CGM? My answer was and still is simply a no.

I haven't mentioned it to my doctor at all because a) it's always awkward to randomly bring up my mental health in relation to logging and CGMs in conversation (especially when your parents are in the room) and b) I'm probably changing endos to an actual adult endo soon, so I don't see much of a point to bringing this up. I'll definitely mention it to my new endo, but I'm just not sure where to go from there.

I haven't logged since I got back from camp, besides when I upload to diasend to have two weeks worth of logs for the endocrinologist and I have been doing a lot better about not checking my CGM obsessively. My big question is where do I go from here? I would love to get my A1C down and to have better blood sugars, but I'm not sure what I can do without obsessing over every single number. Is there anything to do or am I just kinda stuck?

You don't have to answer my questions, as I'm getting professional help for my anxiety now and we're working on my obsessiveness. Let me know if you all also have CGM issues in the comments, I'd love to talk with you!

1 comment:

  1. My CDE recently told me I test to much. Of course she is right, but I cannot stop. I have been a PWD for 43 years and for over 20 of those I never tested. So I told my CDE I am trying to catch up. She wrote the script and said we will talk about it next time. Naw, I said. I will not be caught up until about 2030 at which time I will be 73, I do not see lots of threat in the year 2030. Get out she said.


Enough from me, I want to hear from you!