Tag Archives: burden

Becoming a Chameleon

The longer my life goes on with diabetes, the weirder it seems to get.

I’ve been experiencing a strange situation lately, where I can tell when an infusion site for my insulin pump is giving out. Or, maybe I can say I can just about tell, with the help of my Dexcom CGM, when it’s giving out.

It doesn’t happen all the time, but when it does, it’s always on the last day before a site change. You know, when you’d rather be doing anything else, and when you’d like the last remaining drops of insulin in your reservoir to last all week.

But there I am on those days, eating low-carb or no-carb, bolusing way more than I should have to, and watching my BGs go up even higher. It’s frustrating.

Sometimes I can finally get the numbers to come down a bit, if I rage bolus enough. But it’s only temporary. Eventually, I’ll start to see another trend upward, and the insulin I had hoped would last for a whole day or more winds up lasting only 2/3 of a day. Even more frustrating.

This is one of the many things that People With Diabetes think about when they consider the burden of living with this condition. Despite our best efforts, efficient glucose management does not come easy, even on the good days. Days like this make it even harder.

But you know, the weird thing about it is that I haven’t really experienced this particular issue until the last six months or so. Even more proof that diabetes is not set it and forget it.

Fifteen years ago, I had a terrible problem with morning highs, and for a while, it seemed like I would never get over it. At some point, however, that problem went away (mostly), and then seemingly, another issue took its place. Now this.

This diabetes is a chameleon, and we’re forced to become chameleons ourselves in order to adapt to it. If possible, while avoiding the trap of feeling like ourselves and our diabetes are becoming one.

I wonder what new issues the coming years will bring to myself and my diabetes. Regardless of the issues, I hope to still be here to experience all of them.

Including us. Especially us.

This Tweet really spoke to me the other day:

Renza was at the annual ATTD Conference in Berlin, and she had likely been watching various presentations from companies showing their latest D-tech developments in beautiful, asthetically-superior ways with beautiful, asthetically-superior people. Hence Renza’s tweet.

It should be no secret that the outward message about diabetes, from technology companies, drug companies, and even non-profits, tends to be positive. I don’t think I’ve ever seen a Medtronic, Tandem, Dexcom, Abbott, Eli Lilly, Novo Nordisk, Sanofi, or even JDRF or ADA ad or presentation showing someone dealing unhappily with the day-to-day existence of a chronic condition.

The most obvious reason for that is because it’s not pretty. The second most obvious reason for that is because it’s hard to explain the burden of living with diabetes.

That’s why I sent this tweet in reply:

The thing we need to continue to do is tell our story. No one can explain the feeling I have when late night diabetes attention is required better than I can.

Insulin affordability issues? Listening to people tout their cinnamon okra yogurt cure? Day after day of early morning highs or early morning lows? We’re the ones who experience it. We’re the ones who should talk about it.

No one will know what it’s like unless we show them what it’s like.

There are plenty of things that add to the burden of living with this condition. If they can’t show it in their presentations, I want groups and companies to at least show me how their product or their initiative can help reduce the burden of living with a gusher when performing a set change at work, a failed CGM sensor, and the fear of dying in our sleep.

We, the people living with diabetes, are in the best, perhaps the only, position possible to share this and get non-profits, corporations, and academics to acknowledge and include burden as a factor in their public-facing material.

Yes, of course we can be successful, happy people even after a diabetes diagnosis. But our lives are not the same every day, and there is often a fair amount of bad in addition to the good of living with this disease.

No one should ignore that, or try to put it into a convenient corner for us to talk about when everyone has left the building. Including us. Especially us.

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