I stumbled across this video last night. It feels like it's about diabetes to me. Of course it isn't specifically about diabetes but it certainly captures a very particular aspect of it that I've described in the past. The use of subtitles as a metaphor to capture the underlying dialogue and narrative that plays in our heads as we maneuver through our day. "Am I high, am I low, when did I last eat, how many carbs in that dish?" And here it is, so beautifully used to bring to life this sad, poignant, truthful song by an old favorite, REM. And though this particular song from them hasn't always been my favorite, after seeing this video I've come to appreciate its universal message of human struggle in a new light. In that way too, this song for me, feels like it's about diabetes.
I just got back from a short business trip to the midwest. Only 2 nights away. 3 hour time difference though, which is always a challenge. Ah yes, traveling continues to pose some particular challenges for my diabetes control. It's as if I step into an airport and until I return, my blood sugars are out of whack, pure and simple. No matter what I try, to carry the right food with me, to stay on west coast time throughout the trip, to switch my pump to east coast time as soon as I land, at the end of the day, nothing ever really works. I'm always high on the plane no matter how much insulin I take, or how little I eat. Meal schedules are off once I get where I'm going so regardless of how vigilant I am about bolusing to cover the food I'm eating "off my schedule", it rarely actually works. And night time always poses a special set of problems because of time and meal changes. Raging highs at "bed time", do I correct or not? When I do, I often crash a few hours later, when I don't, I'm in the 300's and up at night dealing with the thirst or need to pee. Beyond jet lag, there's always a little diabetes fun to add to the fatigue of travel. Ah, it's such a bundle of fun.
And yet, at times, it's still worth it. My trip last week was one of the those times. It wasn't fun physically, but even so, it was a very positive experience. And more importantly, I come away from this particular trip with a new view about travel and trade off. Now when I'm faced with travel, I'm going to think about the potential, the opportunity for a positive experience that will outweigh the inevitable negative physical impact on me. No judgement here, no "woe is me", just put the proposition on a scale and see what comes up. Though it might not always be so hard on me physically, I'm going to assume it will be, just for arguments sake. That way I can really weigh the options. That way I can really enjoy the trips when I do choose to go, in spite of the toll they take in the immediate. That way I can feel good about the times I pass on travel, because at those times, the trade off just wasn't worth it.
I had an interesting conversation with an old friend of mine the other day. My friend's son has many severe health issues which she has attended to on an ongoing basis since the day he was born. Surgeries, infections, daily management of the most basic of physical functions. A lot of very tough, unrelenting issues, not the least of which has been having to watch her child struggle and suffer with persistent physical and emotional challenges. She does all this with remarkable grace and courage and has so for the last 16 years. Every single day. She's done so without really noticing that she's doing it and consequently, hasn't given herself much credit for all that she does in the process.
I shared with my friend that what I've come to learn through writing this blog was that it is very important to notice what you are doing and living with, even if it's become normal over time. Just because we're inside an experience like she is or we are, doesn't make the doing of it with grace any less remarkable.
It's weird how that happens, how the normalcy of the "less than normal" life with chronic illness or disease makes it hard for us to see how remarkable the choices we've consistently made actually are. To engage and do what is needed to be done. To persevere even in frustration, exhaustion or fatigue. To simple carry on, day in and day out. My friend does it every day and doesn't recognize it. All the amazing friends I've grown to know through blogging, they do it every day too. All with true grace and bravery.
I've become more and more convinced that it's critical to notice the remarkableness of our normal lives. I think it really matters to see and own the courage it takes to do this. The fact that we deal with this every day doesn't make it any less brave. I'd argue in fact, that in some ways it makes it more so. It's one thing to be heroic in a dramatic moment or event, but it's quite another to step up every time and do it again and again. Like my friend does with her son. Or the diabetes community does. Yes, it takes a special kind of courage to keep standing up in light of unrelenting physical challenge.
I also believe that once we come to see the remarkableness of our lives impacted by physical challenge, it's equally important to let it count for something. For it to have weight. For it to allow if you will, a trade off wherever possible. I've written about this before and I shared this idea with my friend last week. I'm learning to let my diabetes factor into decisions about what I want to do and who I will spend my time with. I'm starting to let it count for more than just the physical maintenance it requires. I told my friend that doing this is helping me. A lot.
She responded by saying, "But what other choice would I have had than to do take care of my son in this way?" And I said, "Oh, there are so many choices you could have made! You just chose the path of character and courage because that's who you are. It's sometimes hard to see this from the inside, but you are truly one of the bravest people I know. And you deserve some credit and gentleness because of it. You deserve to let the reality of your situation count for something in the places where you have choices about how to spend your time or treat yourself. You deserve acknowledgment and comfort and joy wherever you can possibly get it, because you are so very, very remarkable!"
Because she is. And we are. Even though we might forget it most of the time, that doesn't make it any less so.
Yesterday was a wonderful day full of small adventures and happy times. My husband I stumbled on a mysterious place (to me) in search of a scrap piece of metal for a fence we are building. I had an idea and he knew of a place and it turned out to be a magical discovery for me. Fun was had by all.
Later we went to lunch at a favorite restaurant, ran into some friends there, and had a spontaneous meal with them. So fun! We then came home and puttered about, did some more errands and settled in for the night. We started to think about dinner, looking for something simple and healthy to make. There's a wonderful farmer's market we go to where we get the best soup from a local vendor. We freeze it for nights just like last night, when it's cool and we're in need of a warm, hearty meal. We baked some rolls, made a salad and had the perfect, delicious meal.
Or so I thought. I'd tested before and calculated my carbs and insulin needs accordingly. But somehow I must have miscalculated with epic proportions. 3 hours later I tested as I always do before bed and much to my utter amazement, I was 360! 360! I couldn't believe my eyes. What the hell? I've just started using a new meter, so I tested again to make sure it was accurate. Same number! I pulled out my old meter to just make totally sure and there it was again, 360. I was shocked. I didn't have any of the usual symptoms I have when I'm this high. No choking thirst, no blurry eyes, no urgent need to pee. What was going on here?
Somehow I'd simply miscalculated the amount of carbs in our delicious meal I guess. Miscalculated in the glow of my lovely day. Miscalculated in the number of carbs in the wonderful soup that doesn't come with a label with carb information. Miscalculated in my self assured, lack of curiosity to take a little time to investigate the contents to make sure I was covering myself accurately. I slipped up, and boy did I fall because of it. Yikes.
I feel really stupid. I know that this stuff happens and I should cut myself some slack. I really do know it. But still I feel so dumb, so spanked, so presumptuous that I could somehow just go with the flow. That I could just float on the glow of a wonderful day and not do what I need to do as a diabetic. I know I'm being hard on my self, but still that's how I feel.
I'm feeling warn out this morning. I went to bed late because I stayed up to make sure that I brought my blood sugar down reasonably rather than in a manic crash. I woke up early because, though I had been careful last night, I was a little low this morning. What's interesting to me is at least I'm finally acknowledging the physical toll a high like this takes on me. I didn't do that much before. But now I see it.
What's more interesting still is that I'm not sure I'm truly seeing the emotional toll it takes too. More accurately put, I see it, but only after a bit. Only after I've kicked myself around a little first. It's only after the initial flush of criticism and disappointment that I see what I'm doing, and though I notice it and work to stop myself, that first shame and recrimination has already taken a little something from me too. I guess the goal is to stop doing this to myself sooner. To eventually not go there at all. Yes, I know that that is the goal. I guess, as always, living with diabetes is a work in progress.