What does Type 1 Diabetes Feel Like?
From someone who lived 32 years without it.
After being asked this question often enough over the past year and a half, I’ve decided that witty or funny comebacks (or, just as bad, nonchalance) will no longer serve me, nor the rest of the Type 1 Diabetic community at large.
Instead, I will provide my account of what it feels like physically and on various other levels. If even ONE other T1D can share this with someone who loves them but doesn’t know how to care for them, or what they may need in certain scenarios, I will be happy.
Let me preface this by saying that I am only one Type 1 Diabetic. I am also a very recently diagnosed diabetic, so some of the feelings I mention may or may not go away with time. But, I feel I’d be remiss not to share Type 1 Diabetes (Amelia’s Version) with all of you.
A word on blood sugar
Physically, having diabetes feels different when you have high blood sugar and when you have low blood sugar.
A question I get a lot is: “What’s a normal blood sugar? And what’s normal for you?” (GREAT question!)
For the normal person, anywhere between 70-100ish (mg/dL) isn’t going to raise any red flags. (That’s from 3.9-5.6 mmol/L for my friends outside of the US).
For me, ideally, I can stay somewhere between 90-170 mg/dL; however, the threshold changes based on if I’ve just eaten (up to ~200+ (or 11.1 mmol/L) is “normal,” as long as I’ve dosed insulin before it spikes to there). The danger truly comes from blood sugar levels that remain too high for too long. OR, when blood sugar is accidentally sent too low (due to too much insulin), which can lead to sudden death.
High blood sugars, over time, can cause damage to every single organ in your body.
For me, that meant my hair was falling out in clumps, my kidneys were failing, my eyesight was growing worse by the day, and my body was eating itself alive. I lost 25 pounds in a short period (and I was only 100 lbs. to start with), and finally, I began to have slurred speech and stroke-like symptoms. I don’t remember the last two weeks before I went into the Critical Care Unit.
Physically, high blood sugar feels like…
When my blood sugar is high, I can usually tell. It feels like I’ve been force-fed three dozen hot glazed donuts from Krispy Kreme, then told to jump on a trampoline, do some backflips, then jog a casual half-marathon to work. There, I’d typically be expected to sit at my desk from 9-5, just like the rest of the world, all without puking, and within the time constraints set by society on “normal,” “able-bodied” people.
And that’s just after a light, protein-rich meal. A “treat” for me on a day when I’m required to function is a Greek yogurt with 20g protein (7 carbs).
If I’m in the wild, I’m on my own as far as guesstimating the amount of carbs I’m taking in, which means multiple calculations (shoutout to my calculator app on my home screen!) all to figure out how much I should bolus for.
(By the way, “bolus” is just a fancy word for giving a specific amount of insulin before eating or sometimes just because your blood sugar is high.)
But what if I don’t bolus enough? That depends. If I didn’t bolus before— let’s use a recent example: Waffle House—
There are two major keys to a good bolus:
Timing: I probably already know what I’m going to order before we go somewhere, unless, of course, we’re traveling.
Amount: I can only bolus according to what the menu tells me, but let me go ahead and tell y’all that a half serving of hash browns and half a strawberry pancake is much more than the 70 carbs I had counted!
Cue the feeling of eating three dozen Krispy Kreme donuts again, except this time, you’re also blindfolded and put on Space Mountain. I get irritable, out of breath for no apparent reason, my face gets flushed, my vision gets blurry, I get headaches, and I feel nauseated. I feel extremely sluggish, my brain is foggy, and I also usually feel excessively thirsty.
I generally find the nearest flat surface and lie down while I wait for (up to two hours) for my insulin to catch up to the carbs, finally. I also pound water (hydration is a diabetic’s bestie) and attempt to move around as I start to feel better. Movement helps get the blood flowing and the insulin to where it needs to be.
How can you help? If you’re asking this question, bless you. The kindest things people have done for me have been small, but the most meaningful gestures.
Things like:
Grabbing me a Sprite/Ginger-ale/Coke ZERO (NO SUGAR)— or water
Asking if I feel like a break would be good
Talking to me in a normal way, or telling me funny stories
Helping me to a couch, bed, a yoga mat, or a cool spot on the floor
Telling me to take my time and rest, and that I’m not missing out on anything cool
Physically, low blood sugar feels like…
Low blood sugar occurs when I overshoot my bolus. So if I’m guessing a slice of cake will have 120g of carbs, but it only has 80, my body doesn’t know WTF is going on. My blood sugar behaves as it always has (similar to when I had a functioning pancreas for 32 years), and my blood sugar levels drop.
Low blood sugar feels like a panic attack mixed with cold sweats and (again) irritability. My hands also shake, and my palms become sweaty. Oh, and I become super forgetful. Some people report fainting spells, seizures, and numb fingertips or toes, but mine is usually limited to a feeling of impending doom,
The problem for me is that I’m already a chronically anxious person. So, without my CGM (constant glucose monitor, also known as my Dexcom, also known as the little round thing that’s stuck in/on my body 24/7), I honestly might have no idea that my blood sugar was too low until I was in a coma.
This introduces yet another layer of issues, as my CGM isn’t always even close to what my finger pricks indicate my blood sugar level is, which means numerous finger sticks until I get my CGM calibrated.
Even then, I’m still wary of the CGM. The Girl Who Used To Cry Over Shots and Needles now pricks her finger (almost) every morning just to make sure the two numbers are within the same ballpark,
Finally, neither high nor low blood sugars causes me to wake up if I’m already asleep. I’m currently hoping to get a dog trained in smelling blood sugars/ketones who can wake me up once I live on my own again.
How can you help? (Again, bless you.)
Ask if I’ve double checked my blood via a finger stick & offer to help me if I’m struggling due to shaking hands.
Find a regular (YES, WITH SUGAR) Coke, Ginger-ale, Sprite, etc. for me (these are my go-tos, as they usually help my stomach feel better when I’m anxious from low sugar). Also, liquid hits faster than food.
Make sure I’ve texted my family, or offer to text them for me (they also all get my alerts).
If we’re going to be exercising/hiking/walking excessively, offer to throw an extra Juice box in your purse/pocket for me.
Decision fatigue & the emotional toll of T1D
If your brain isn’t spinning after reading all of the information I’ve spit at you in the past few sections, congratulations! (No, seriously, it took me months to learn this stuff.)
But if it is spinning, then welcome to my world. Every single second of every single minute of every single day is spent feeling like I am my own life support machine.
There’s a (probably bogus, I don’t know) number I saw on Instagram earlier that stated that Type 1 Diabetics make 300+ more active decisions in a day than the average person. This can often lead to decision fatigue, which can show itself through burnout, FOMO, and guilt over not managing one’s diabetes “perfectly.”
And here’s the thing that I want you all to understand: We want to spend time engaged with our friends and family, not worrying about our blood sugar. We want to be there for the special moments, without worrying that our CGM or pump is about to start blaring a siren signaling a low. We’d love to try your grandmother’s blondie brownies, but we’re already trending a touch high. We can do the same thing every single day, eat the same foods, and still get the same number of steps, yet we can end up with wildly differing blood sugars.
But we’re trying our hardest. Often, we feel like outcasts to our friends and like burdens to our families. We feel it in the stares as we inject in public. It can also be tough to work a (traditional) full-time job, and yet, the hospital bills and the insulin and the CGMs and the pumps continue piling up. But we’re trying our hardest.
TL;DR
I know. I got into some scientific stuff up there.
The most important things I want you to take from this are:
High blood sugar = bad in the long term (think: organ failure, coma)
Low blood sugar = bad in the short term (think: loss of consciousness, sudden death)
High blood sugar feels like: Eating three dozen hot glazed donuts from Krispy Kreme and then being forced to do both manual and mental labor.
Low blood sugar feels like: a Panic attack with cold sweats and an impending sense of doom.
Neither one of these typically wakes me up in the middle of the night, which is the scariest part of T1D to me, and the main reason I’m looking forward to getting a diabetic sensing dog.
Individuals with diabetes in your life are likely exhausted 24/7, even if they handle it with grace.
Please give them a little bit of grace wherever & whenever you can.
Finally, no matter what age you are, REQUEST AN “A1C” TEST at your next physical! Mine likely would have caught my T1D before I ended up in DKA.
If you have any specific questions that I didn’t address, please post them below.
I have a follow-up article planned, with lots of things I couldn’t fit into one post… things like:
How does alcohol affect your blood sugar?
Is your diabetes considered “genetic” even though you didn’t get it as a child? (In other words, could you pass it on to a child?)
What’s the difference between Type 1 & Type 2?
How much does exercise affect your blood sugar?
How the hell did you survive your brother’s wedding weekend? (Lots and lots of love, grace, protein, extra supplies, and months of planning, tbh.)
How does sleep affect your blood sugar?
And quite a few more I’ve been asked recently, which I need some time to think about and research a bit more before answering.
BYE FOR NOW!
Xx,
Amelia
Oh, and I rarely ask this of y’all, but would you consider sharing this with anyone who loves a T1D, or who may have it? (The share button is right below)