I’ve been on a rollercoaster the last few weeks, adjusting my insulin regimen, investigating pumps (which I’ll probably be switching over to in the near future), journaling every single thing I do each hour of each day. I’ve been frustrated as I watch numbers fall above and below the target but (for the most part) fail to land softly in the middle; frustrated because I know the issue is a basal rate that probably CAN’T be solved until I do switch to a pump, but in the meantime I’m trying my best to correct with an adjustment in my Lantus dosing. Diabetes has been the number one thing in my mind for the past two weeks. I mean, it’s always on my mind, but this has been an intensive period where everything else, including my birthday a week ago, seems like a very distant “second place” to diabetes.
To be fair, I knew this period was coming. After going to a new diabetes center (the Penn Rodebaugh Diabetes Center in Philadelphia, which has been a WONDERFUL place and an incredible resource already after only two visits — thank you Dr. Lee!), I was asked to take a two-week period and document everything in fine detail so the team could get a really clear picture of what has been going on with my fluctuating numbers. And in the end, the pattern seems clear, and the solution is pretty clear, too. It’s just that the solution needs to be the variable basal rate abilities of a pump, not my current MDI (multiple daily injections) routine. So there’s an endgame in sight and I’m confident that I’ll ultimately achieve a higher level of control than I’ve ever had (and in general I’ve had very good control for most of my life).
But this whole experience highlighted something else for me. It highlighted the sense of disconnect, loneliness, and isolation that can come with diabetes. Lately, every time someone asks, “How are you doing?” I’ve wanted to respond with: “Well, my numbers have been jumpy. I think my basal rate is too low for daytime blood sugar, but it’s OK overnight and I can’t raise my Lantus because then I’ll go really low in the early morning. I’m probably gonna switch to a pump because, as you know, that could give me variable rates. But right now it’s frustrating because I can’t set my carb ratios until I get this basal rate correct. You know how frustrating it is…” Except no, they DON’T know how it is. They have no idea! I would need a half hour PowerPoint presentation just to provide someone the necessary background information and context to even BEGIN to understand that statement! They have no idea, and they CAN’T have any idea!
Diabetes is a funny disease in that it hides in plain sight. Unless you tell someone you have diabetes, they would never know you had it. And so it’s not something that registers for the people around you. And even those who do know you have it don’t really understand the complexity of managing it, or what it feels like to live with it. For most it’s just, “oh, you can’t have sugar.” I play music, and I’m intermittently on the road with one of the bands I play keyboards for. This group has known me for many years, and I would consider us friends even if we didn’t play music. They’re good people, attentive, and all very intelligent. They know I have diabetes — I’ve gone through the glucagon presentation with them a few times so they know how to treat a severe low should it happen on the road. But they have no idea what diabetes feels like from the inside out. They have no idea how much time I’m spending documenting and calculating. They don’t know how fickle blood sugar can be and how frustrating it can feel when you’ve done all the calculations “right,” but your system is just having “one of those days” where it responds like a bratty child.
On the most recent trip with this band, I was really struggling with my numbers. This was before I started my journey toward the pump at the Penn Rodebaugh Diabetes Center. I was in the process of assessing what was wrong and trying to line up that first appointment because I knew something was off and my regimen needed correcting. I was feeling frustrated, tired out, and wanted to vent. But the things I wanted to vent about were things nobody in that van could even understand! That’s not because they wouldn’t WANT to understand; not because they wouldn’t WANT to be supportive of their friend; but because without experiencing diabetes from the inside out, without feeling the drain that can come with a 24/7/365 condition that will never go away, without feeling the frustration of doing everything right and still getting the wrong result, without the experience of the constant mental calculations and adjustments, without the “diabetes goggles” that translates every single plate of food into a numeric value to be matched by a sliding insulin scale, without ALL of that direct experience, they simply couldn’t understand what I was feeling.
Diabetes hides in plain sight. And often that’s a blessing — diabetes doesn’t force us into any spotlight, it doesn’t stigmatize us. We can live normal lives, and we live in a golden age of management — there’s no cure, but the sophistication of today’s management tools blows away anything in the past by a long shot and helps us manage our condition conveniently and discreetly! But that also means that sometimes we suffer in silence. Sometimes we’re going crazy on the inside, and simply can’t convey the experience to our friends with functioning islet cells. It’s just part of life with diabetes. There’s a part of our lives, a big part of our experience, that can only be partially understood by our loved ones — even if they DO know all of the medical/technical stuff, they still only know it as an abstraction and will never have the direct experience of it.
If anyone else out there has had this experience, I invite you to share in the comments below with your fellow Diabetians. Sometimes, we just need to vent to fellow travelers on the diabetes path.