Let’s first take a stroll down memory…
I’m about 9 or 10. I participated in a trial of something called “The GlucoWatch” or as I call it, The Watch. Needless to say, I was traumatized by the whole experience. Working it was a nightmare, even for my dad, an engineer. Taking it off was painful, and I didn’t last very long before sassy 9/10 year old me was done. Then middle school arrives, and the CGM (the next generation) made their way to the scene and into the conversation. My diabetes care team and my mom BEGGED me to try them. I refused. In my mind, I didn’t need it, and I was still a little weary after my experience with the watch. Do I even get into my tween/teenage attitude on the matter? I was a force to be reckoned with.
(Photo from a Display at the ADA 75th Scientific Sessions- MY how things change and everything needs a beginning)
The begging continued for years. I refused for years. I watched as many of my friends went on CGMs, as the technology changed, and as insurance “accepted” it. I still didn’t want anything to do with it. I didn’t want something else attached me.
College hits, and my junior year, I finally caved. I got a CGM, but it sat in a box in my closet for 7 months, oops? I then gave it a shot (an entire month might I add). I hated it again. It wasn’t accurate and wouldn’t stay attached. Having all that data available stressed me out, significantly. I gave up. Refused it all over again and packed it back in the box. A member of my diabetes care team at the time, was skeptical of me going on it beforehand, why you ask? I was checking 8-12 times a day already, and she was happy with my A1C. BUT- She was mostly concerned about what I do when I go above 250. I would already check my blood sugar every 20 minutes or so until I would go down (*without a CGM). She was worried what 5 minutes of access would do to my mental state.
Then senior year of college hits. My new diabetes care team asks me to give it one more shot and see how I feel. They somehow convinced me to try a new CGM. I’m skeptical and worried, but I decide to try and keep an open mind.
So I do, at first, I’m very skeptical and not very open to it. I’m looking for any reason to stop using it.
But then a few things happen. It stays on my body. It isn’t falling off. It’s accurate. Maybe this isn’t so bad. (as a human being I’m allowed to change my opinion).
I’ll go into what I’m excited about and then explain why it’s complicated.
I love it for exercise: do I lower my basal rate at all or how much; do I need a snack; do I need extra insulin? The CGM answers these questions for me, usually. I’ve also learned how my body reacts to different types of exercise. and- let’s face it- When you are in college, it’s hard to keep a consistent schedule to help with how you react to exercise. I love it for driving. It’s also helped with management when I’m on my period. I also HATE logging my blood sugars and now this nifty thing does it for me- cool, right? My diabetes care team and my mom are happy. I’m sure the people who care about me in life feel better that this is attached to me too (I care deeply about other people’s emotions which can be a problem). Plus, no one is asking me why I’m not on it anymore? But the big surprise surprise- the CGM has actually helped me with my anxiety. WHAT. It did get worse before it got better might I add.
So let’s get into the complicated part. Why do I call it complicated? A lot of the people I interact with and chat about CGMs with- either love it or hate it (with an occasional in between). I don’t really find that I’m in between or anything? Just like many aspects of Diabetes- it’s complicated. How I feel about it depends on the day really.
I’m not a fan of having something else attached to me, but now it feels weird if I don’t wear it. My insurance is not a fan of it so the cost is a little outrageous. (But remember exercise and driving- win win.) My A1C hasn’t gone down since being on it (so far). My overall care hasn’t changed too much either (at least in my opinion) besides exercise.
You know why one of the reasons it’s complicated?
Everyone keeps saying “I bet your A1C went down” or “you must love it.” I’m not a fan of talking about data, that’s personal- it also doesn’t tell the whole story. I’ve gotten a lot of shock about the fact that I haven’t had some drastic change in my care. Which honestly, does bother me a little bit. Again, as people have heard me and those who know me- I feel that the world expects a level of perfection (including ourselves) from us because we have all of this new and improving Diabetes technology. We should do better and get better when we get new and shiny things. Why isn’t our blood sugar within the lines on a CGM? You have all this technology and information they didn’t have before? I should be doing better with everything I have at my disposal, shouldn’t I?
Disclaimer- I have not delved into any of those sharing options, and in all honesty- I doubt that I ever will (I won’t say it as a definite/ decision). Having it on the receiver is stressful enough, but I don’t want to imagine my brain with all of that 5 minute up to date information sitting on my phone. I have FINALLY reached a point where I can put my CGM away or in another room and not craving to constantly look at it, except when I’m above target. I feel like I’m not at the point where I can have the access on my phone and handle it – I still have a ways to go in how I relate to my blood sugar. Also- my blood sugar is a personal piece of information which is up to me if I disclose it.
So let’s get more into this Diabetes and anxiety bit. What a fun combo, right?
Like I said, the minute my blood sugar is above target, I start checking ALL the time. I’ve been told to stop and that it doesn’t do any good- but I have this companion called Anxiety with a bag filled with OCD (I promise to post more on that later)-Which makes my brain go nuts when I see my blood sugar above target. I literally don’t even think about what I’m doing when I recheck- I just do it. One of my main reasons for trying to take care of my diabetes the best I can (besides all of the other reasons we all know exist) is I know how my brain gets when my blood sugar is above target (needless to say- I get upset and anxiety, OCD, and ADHD go in a million different directions). I don’t like how my mind is if my blood sugar is out of target (among all the other symptoms at the same time). Seeing that number constantly on a screen drives me insane. When I see the up arrow, I actually go a little nuts. I keep looking at it, and I want to rage bolus. I think it’s not going down fast enough. My endo also lectured me when she saw all of my pump settings since being on a CGM- I think I was up to 16 at one point plus various patterns. She told me too much. I shouldn’t have as many. (I’m still trying to work my way down).
I do have to say, at the very beginning I felt like I was torturing myself. My anxiety definitely went a little haywire. BUT- NOW- I don’t constantly look at the screen all the time anymore (even if I do creep up a little bit or my blood sugar is above target). I don’t get as stressed out about elevated blood sugars and having access to the data all the time. I find myself not constantly checking my blood sugar when I go above target, saving money- YAY! It was also very helpful to have during my life changes-graduation; my new job, my move to Boston; when I started taking medicine for the ADHD; and for travel in general. Being on a CGM also makes me feel like I am doing the best I can in taking care of myself because I am utilizing a piece of technology that does make a lot of difference- I have my next endo appointment in a few weeks so I am definitely curious to see what happens next with it?
So there it is- it’s complicated. I definitely understand its impact and its value (and how it helps of course). There are definitely things I like about it, but at the same time there are things (I wouldn’t necessarily say “dislike) that make my relationship with my CGM complicated- and you know what? It’s perfectly fine for me to feel that way– I don’t like a world that’s black or white- and I don’t like the grey area either- I like what fits for me, and you can’t just check a box and be done. I also like to change my mind which is okay too.
I feel like my relationship with my CGM will remain complicated for a very long time- and it isn’t a negative kind of complicated- it’s just complicated.
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