Often our health care team only sees us for about 15 minutes several times a year, and they might not have a sense of what our lives are really like. Today, let’s pretend our medical team is reading our blogs. What do you wish they could see about your and/or your loved one's daily life with diabetes? On the other hand, what do you hope they don't see?
When I come to visit you, I may appear calm, cool, collected, and I even make jokes. This is not the real me. This is a façade. I am a fraud. It's not because I'm hiding anything. I do this because I am really a basket case, just fraying at the edges, ready to come apart at the seams.
I know you are trying to help me, and I know you must be wondering why anyone would be this anxious when you're just trying to help me?
What I want you to know is that I'm trying. Back in the day, I was a solid B+ student who got a good share of As. However, these days I know that I am a C student in your eyes - I am the student that never seems to get it quite right.
I know you never have criticized me directly. I know you want to guide me, to help me overcome the challenges that I have faced and will no doubt face in the future.
But we both know...
I don't exercise like I should.
I often miscalculate the number of carbs and even forget to bolus on occasion, which is obvious when you look at my logs.
Sometimes I even forget to hit the button on my pump that one last time to actually initiate a bolus.
I do mean to test more frequently, but sometimes, well, life just gets busy, and I don't quite get to it. I know my HbA1C may even be less than stellar with a 9 point something. And no, I can't even remember what it is. To me it is nothing more than a measure for you to grade me.
I know that you know that I live with this disease every day. But I also think that the words "every day" might mean something different to me than it does to you.
For example, when you go to work every day, then you go home, leaving the day behind, and enjoy what's left of the day with your family.
When you walk the dog every day, you get out there, play with your dog, come home and perhaps watch an episode of Modern Family or the Amazing Race, or call your mother.
Yes, I do all that too (admittedly I could walk the dog more, and I'd certainly like to have the luxury of sitting in front of the TV), but every day, I am wrestling with this blasted disease that permeates everything that I do.
I sometimes deal with lows that seem to come out of the blue, interrupting conversations with family members, fogging up my mind at work, and then must snack, test and deal with the subsequent roller coasting of blood sugars. I fight stubborn highs, which demand my attention.
I don't get to plan these things. They just jump into my life, and I deal with them.
I would like to share a story with you. Last night I was prodded by the CGM, insisting that I had a low blood sugar. When I got up to test, it turns out that my CGM was playing a stellar game of the Boy Who Cried Wolf - and insisted on playing it - all night long. The dog thought it was pretty exciting too, and thought she might need an excursion to her potty in the backyard.
This is not an unusual story. It is one story of many that interrupt me and demand my attention. This is my "every day".
To look at me, you may not see a B+. You may see something less than your definition of best. But in my eyes I'm still that solid B+; the plus because I am still trying my best.
All I ask is to please see beyond all the numbers and get beyond any assumptions about me. See me for who I am - as someone who is getting by and perhaps just needs a break.
I would like you to know that I know you are here for me. But next time we meet, take a minute to ask me how I'm doing, and then, really listen to my answer.
Beautiful, Jamie.
ReplyDeleteLove this post, Jamie.
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