This post was originally written and published on Inspired Forward, my first blog, in 2018. My T1D life has evolved significantly over the last 5 years, and accordingly, this post has been updated.
I have Type 1 Diabetes. That means my pancreas doesn’t produce insulin, and I have to give myself that insulin. I use a Tandem t:Slim X2 insulin pump, but others do injections (also called MDI, or "multiple daily injections".
For the sake of simplicity, I’m going to say “diabetes” and mean Type 1. Type 2 Diabetes 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 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.
(We also learn how to doubt the bogus cures and treatments flooding the tabloids. Listen to episode 78 to hear Jessie & I make fun of them.)
A day in the life with my diabetes looks like this:
- Wake up and check BG on my CGM.
- It's usually riding around 90 mg/dL when I wake up, so I rarely have to give insulin for missed basal for the shower. But if I do...
- If needed, give a small bolus for the basal I will miss in the shower.
- Depending on the day, I leave right for Orange Theory, boxing class, or a hike. Those days, I fiddle with a rotating combination of exercise mode, suspend, and smarties.
- When I shower, I suspend my pump so I don't lose insulin from the cartridge / reservoir while showering.
- Unhook the pump from my body and plug it in to charge.
- Make sure the pump is under my pillow so that, when it wails alarms telling me I'm a) out of range, b) suspended, or c) low/high, the beeping doesn't wake my husband up.
- Re-hook after showering. Wait a few minutes for the transmitter to reconnect to the pump so I can see what my number is.
- Keep an eyeball on my CGM graph either on my phone or on the pump screen for the next few hours.
- Correct any morning highs that happen. They happen a lot.
- Listen for pump / CGM alarms. My pump vibrates, so I sometimes miss them.
- Check BG on CGM before calls, if I feel weird, if I'm going outside on a walk, before getting in my car for appointments or other errands, when I feel like it, during exercise, in the evening, before bed, before / after baths, etc.
- Keep track of how much insulin I have left and time out when to change my infusion sites. This is especially important when I'm traveling.
- Make sure the reminder / recurring event on my calendar for sensor changes every 10 days is correct.
- Change infusion site and / or Dexcom sensor when needed.
- Check / correct before and after all meals.
- Count carbs. Pay attention to the type of carb and the macro profile in case I need to do an extended bolus or watch for a spike / drop later.
- Calibrate if my Dexcom is more than 20% off of my meter, AND the trend arrows are not straight up or straight down.
- Wake up in the middle of the night to alarms—clear alarms and fix whatever it's alarming about.
- Sometimes have to do midnight sensor or infusion site changes.
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 can check with my meter up to 6-10 times a day if my sensor is giving me problems.
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 the 5% range.
For a non-diabetic, the normal A1c is below 5.7%.
For a diabetic, anything in the 5% range can astonish a doctor.
Diabetes Affects Everything
It dictates when and for how long I can exercise. It dictates when and how much I can eat. Losing weight as a T1D has the potential to be difficult, because insulin is a hormone that promotes weight gain.
My personal weight loss story revolves around super high highs and super low lows preceding a diet 180 to try low-carb, and subsequently losing 70 pounds.
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 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.
My sensors come from Byram, and they auto-ship, thank God.
Infusion site supplies come from Edgepark, and they make me log in to "confirm" each order even though it's implied that they auto-ship. (They don't.) I once had Edgepark conveniently forget to tell me they needed a new Rx from my provider, and left my "auto-ship order" sit in processing for two months. This is why I have backups upon backups.
And... this is the worst one... I have to order my insulin through Canada. Because my corporate insurance won't pay for Novolog (because Humalog is the same, didn't you know???), my doctor writes the script for Novorapid, which is what Novolog is to the rest of the world.
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 pronounced it.
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.
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.