An example

During a recent OzDOC chat on Twitter, a point came up about whether it's our role to be a constant advocate and educator on t1. Whether we need to "properly" represent t1.

I would argue no, it's not, but I often feel like I'm an access point to t1. Often, I'm the first person someone has met with t1 and I'm very aware that what they see is likely what they take away about the condition. I'm becoming increasingly aware I'm not always a shining example like I used to be. Lately I think people around me have seen people with t1 as having constantly fluctuating levels, tiredness, sensor alarms going off constantly. I've projected that having t1 means instability. Perhaps they think I'm somewhat fragile, fluctuating between extremes. That's not the message I want to convey about people with t1 though. I want non diabetics to see that we function normally and manage it well. I want people to see that it doesn't limit me in any way.

Not so long ago I was the one with fantastic sugars, great a1c results even under 6 sometimes. I was precise and stuck reasonably well in the 4-8 blood sugar range. I was congratulated on my tight control and encouraged to keep at it. But then as I got older and time passed, it became harder.

I don't weigh food and carb count precisely.
I don't take my insulin 10-20 minutes before I eat for optimal results.
I don't consider the GI of food or what it will do to my sugars.
I don't correct high blood sugars promptly.
I don't regularly fine tune my insulin levels.
I don't test my basal rates (background insulin amounts).
I don't analyse my sugars for trends often.
I don't keep a log book.

I operate my diabetes on auto pilot instead.

I see my twitter feed full of sugar levels. Sometimes someone is aghast at a level I wouldn't bat an eyelid at these days. I know everyone is different and I do need to run a little higher because I can't feel my hypo symptoms, but there's always the sense I could do better.

I'm often asked how my diabetes is going, how I'm managing with it. It's hard to respond to that question. I don't feel justified saying I manage it well any more. I don't. I get by. I do enough to be safe. My a1c is 7.5, perfectly average considering I'm hypo unaware.

Maybe I'm not a very good example any more. But maybe I don't have to be.

Comments

  1. You're mindful of modelling a good example of type 1 to those around you.
    You're telling me that type 1 isn't the most consistent condition.
    You're sharing that you're only human, and that sometimes diabetes takes a back seat to the other things in life.
    You're being honest and not sugar coating the realities of this lousy condition.

    I think that's a pretty good example.

    And I don't think being a good example goes in hand with doing all of the things in that list. Although, I do hope that you are able to shift out of autopilot mode when you're able.

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