I’ve mentioned before that I have Type 1 Diabetes. Put simply, that means my pancreas doesn’t produce insulin, and I have to give myself that insulin. I use an insulin pump, but others do injections.
For the sake of simplicity, I’m going to say “diabetes” and mean Type 1. Type 2 is a different disease.
Diabetes is considered an invisible illness. There are no outward, physically visible symptoms that show up. Unless you’re a regular Sherlock, one look at me wouldn’t tell you that I’m a diabetic.
My insulin pump is so slim that it hides neatly under my clothes. My CGM sensor sits on my arm, a little bump that’s usually unnoticeable.
But I see it all. I feel all the highs and the lows.
I feel the stress.
Diabetes isn’t a joke – it can kill people. Being too high or too low can spell disaster. The magic is hitting the sweet spot with my blood sugars – making them look like this:
I believe that my diabetes gave my mom gray hair. She woke up in the middle of the night every night to check my blood sugar when I was a kid. I sometimes wonder if she still wakes up at 2 AM thinking she has to go check me.
That’s what diabetes does to people.
It trains you into a new “normal” that never goes away.
There is no cure, only treatment.
I get excited about new treatment technology like smaller sensors, touch-screen pumps, and closed-loop systems.
We’ve learned to doubt the exclamations that a cure is 5 years away. A cure has been 5 years away for 50 years.
A day in the life with my diabetes looks like this:
- Wake up and immediately check blood sugar.
- Give a correction if high.
- Give a bolus for the basal I’m going to miss while in the shower.
- Put on a temporary basal of 0% so I don’t lose insulin from the reservoir while showering.
- Clear the alarm on the pump telling me that my basal is too low – if I don’t clear it, it’ll beep loud enough to wake the husband.
- Unhook pump from my body and plug it in to charge it.
- Re-hook after showering and check number again.
- Monitor for the next hour and a half to make sure I didn’t under or over correct.
- Check again when I get to work.
- Bolus in advance for my Keto Chow shake.
- Calibrate CGM when it asks for a blood sacrifice:
- Listen for pump or CGM alarms all day.
- Check before eating, before meetings, if I feel weird, if I’m going outside to walk around for a bit, before getting in the car to leave, when I get home, during the evening, etc.
- Keep track of how old my infusion set is since I have to change it every three days.
- Change the infusion set when needed.
- Change sensor once a week.
- Check before bed. Correct with insulin or food if necessary.
- Calibrate again.
- Wake up in the middle of the night to alarms – clear alarms and fix whatever it’s alarming about.
Some days are worse than others.
Some days are slightly different, like when I have to change my sensor or change my pump site. Even with a CGM I probably check 6-10 times a day on average with a glucose meter. This has helped me get really good control over my numbers and has brought my A1C, which is a measure of average glucose over the last 2 weeks (though it’s only tested every three months) down to 6%. For a non-diabetic, the normal A1C is around 5.5% or lower. For a diabetic, 6% indicates VERY good control.
Diabetes affects everything.
It dictates when and for how long I can exercise. It dictates when and how much I can eat. My experience and efforts in losing weight have only recently started to stick because insulin is a hormone that promotes weight gain. There’s a whole cycle there that indicates carbs are the culprit, so I eat low-carb now and my weight and insulin dose have plummeted.
My diabetes governs the conditions under which I can drive my car.
There are news stories about crashes caused by people who have fallen unconscious from a low blood sugar while driving.
That – THAT terrifies me. And it’s the reason I have to be so in tune with my body that I can feel the low even if my sensor doesn’t catch it.
There’s stress involved with the daily routine of care, the not-daily fires to put out if something’s gone wonky, and then there’s insurance.
Both the bane of my existence and the reason I’m able to keep such good control.
I have to go through three different suppliers to get all my supplies. They all ship on different cycles, and billing is a nightmare.
I once had a three-way call with my mom and our insurance provider because they just wouldn’t listen to my problems in order to help.
Some days it feels like too much stress to bear, and some people can hit a breaking point. They just *can’t* anymore.
I’m going to preemptively say that I’m lucky to have never experienced diabetic burnout. This is when you just stop taking care of yourself in the futile wish to be “normal.”
Burned out diabetics stop taking their insulin, stop counting their carbs, stop checking their blood sugars, and stop caring.
What follows is a rapid decline in health and stability and you end up worse than ever.
It might be selfish or inconsiderate to say that I think those who are diagnosed young are better off – not because of anything against teenagers or adults, but because we don’t know any other version of “normal.” I was diagnosed at age two – so young that I don’t even remember it, and I’ve never experienced the normality of eating a bowl of breakfast cereal without checking my blood sugar first or giving insulin for it.
Burnout is terrifying to me, and it’s caused by stress.
The stress of diabetes is not a joke. Diabetes is not a joke, despite how Wilfred Brimley pronounces it. “Diabeetus.”
At this point, it feels and sounds like I’m just complaining about this disease, but like all things, it’s a balancing act.
I have friends that I never would’ve met without having diabetes, and for these people, I’m eternally grateful. I love talking about diabetes with interested parties at work or when I was in school. And I give back to the diabetes community every year by volunteering at a local summer camp for children with type 1.
So yeah, it’s stressful, it’s annoying, and I often wish I didn’t have it.
But it’s also a blessing in disguise.
Do you have an invisible illness that you’re comfortable talking about? What questions do you have about type 1 diabetes?