I was diagnosed with Type 1 Diabetes almost 10 years ago, and since then I spend each day learning how to keep myself alive — for the rest of my life. Now I understand why we don’t say it sucks “having” Type 1, no, we say it sucks “Being” Type 1. Everything you do, everyday single day, is impacted by this when you are a Type 1 Diabetic. I currently use an insulin pump that is attached to my body 24/7 with a small injection site (plastic needle), administering artificial insulin to help regulate my blood sugars. Oh and we have to check, or monitor our blood glucose levels (blood sugars) continuously throughout the day. Every day.
So what’s the big deal?
The challenge is figuring out how much insulin to give yourself and when, every minute of every day, based on things like food, activity level, stress level, sickness, temperature outside, sleep, etc. And because it’s just so damn hard to get this right every minute of the day… we feel like crap a lot, and it sucks.
Most of the following text discusses the challenges and struggles a Type 1 Diabetic faces daily. But I want this text to be inspirational as well… it is not all doom and gloom. Through all of the highs and lows of this disease, I am happily married with two wonderful kids. I successfully manage having two great careers (a daily job and part-owner of a small business). I have great family and friends whether nearby or far away. So yes being a Type 1 diabetic sucks and isn’t easy, but my life is still pretty great and I will always make the best of it.
Sense of Humor.
I have learned to always be ready to laugh at the jokes and misunderstanding by many, including friends and family. “Hey are you sure you can eat that? You might lose your hands and feet! …just kidding haha”. Meanwhile in my head I know that could be a reality no matter what I do or do not eat. To be honest I probably eat healthier than the person asking! It does make me laugh. How about when someone finds out you have diabetes and mentions “oh yeah my 60 year old Aunt Betty has Type 2 Diabetes, I know all about it”. After gritting my teeth, trying not to interrupt, I kindly explain that what type ones endure is much different than type 2 diabetes. Being Type 1 Diabetic, I cannot exercise or healthily eat my way out of diabetes. No, my genetics and my pancreas worked together to say no more insulin production for you.
What is it?
Type 1 Diabetes is an auto-immune disease. The essential hormone, insulin, is no longer produced due to the fact that one’s immune system attacked insulin-creating cells. Insulin is extremely important, its main function being to metabolize glucose in the blood for your cells to make energy. Without insulin, the sugars do not get into your cells, and accumulate in your bloodstream, which can be very harmful and even life threatening. Type 1 Diabetics must manage blood sugars and manually balance insulin input. Too much or too little insulin can cause severe dehydration, fainting, seizures, comas, and even death. Short-term effects you will read about below. The long-term effects of ill-managed diabetes go on and on including kidney damage/failure, liver damage, loss of extremities, loss of vision, cardiovascular issues, shortened life span, etc.
An average, healthy person’s day goes a little something like this:
Wake up. Debate whether work or school is really so important that they can’t sleep more. Brush teeth. Eggs or cereal? Ah man, it’s blazing hot outside; go change into something cooler. Where are my keys again? Oh right, right where I left them. Duh. Bye, puppy! I’ll see you tonight! Drive to school or work; there’s chatty Cathy again. Really? It’s the morning and I haven’t finished my coffee. Type, scribble, answer phone, sip my third cup of coffee. Is it five o’clock yet? Wrap it up and you’re back home.
Now here’s a little bit how a Type 1 Diabetic’s day goes:
Wake up. What in the world? Why are there 13 candy bar wrappers in my bed? Oh right. My blood sugar went low last night, felt like I was going to pass out, heart racing, sweating and I ate candy in bed to bring it up. That reminds me, I have to test. Great, 128, I finally got my overnight basal correct. Brush teeth. Eggs or cereal? Well, the last time I had cereal my blood sugar shot up. I guess I’ll just have the eggs and hope I don’t go low. Ah man, it’s blazing hot outside, which means my blood sugars are going to skyrocket? Unless I’m moving around then I might crash. Better find some shorts that will fit my insulin pump. Damn it, my pump insertion sight fell out again. Need to change that before I leave. Do I have enough snacks in my bag in case I go low today? Where are my keys? Oh, right, I left them on the counter when I rushed in to grab some juice to raise my blood sugar (throw having some kids into the mix and it only get crazier!).
And this is only the start of our day. Questions surrounding blood sugars, carbohydrates, lows, highs, and insulin, amongst the few, clutter our minds all day long. To give me and my fellow type ones some credit, we are literally responsible to keep ourselves alive every minute of every day. And we never get a break.
A lot of the time I just feel like crap. It’s constantly feeling dehydrated. Dry, fruity breath where nothing can quench the thirst. Always thirsty. Legs feeling heavy like they have thickened blood inside of them. My body temperature always running hot. Sweating when my sugars go low. Having to pee 2-3 times more than normal. Loss of electrolytes has me feeling like crap. A constant lack of energy.
Every time I eat or drink I must figure out exactly how many carbohydrates are in those foods (not just sugar but total carbs) and then use some math to try and determine how much insulin I need to cover those carbs. Then I must punch this into my pump so it can deliver the medicine I need. I have to time this just right before meals so that my sugars do not spike. The truth of it is I don’t always time it just right, whether I forgot or because I am busy at work or busy with kids or just busy with life. I spend a lot of time reading nutrition labels. Or guessing how many carbs when out to eat at a restaurant. Trying to learn how different brands of food affect my sugars differently. Pizza from this place versus that place. All this calculating, anticipating, guessing, and preparing is just difficult in and of itself.
Waking up 3-4 times in the night because I feel my sugars going low/high. Waiting for my heart to stop racing and that I might die if I don’t eat everything in the fridge. Waking up feeling hung over just because my sugars were high all night. Or waking up drenched in sweat because my sugars crashed and my body is begging for sugar. Feeling in a daze and completely out of it. Panicking when I do not have sugary snacks to eat.
It’s quite upsetting when I go down into the basement to do a light workout and I feel good to go, and within 20-30 minutes my sugars are crashing and my body feeling like collapsing and I will pass out if I don’t eat everything in the next five minutes. I can’t go a single work out without stressing if my sugars will drop too low from doing cardio, or go too high from lifting weights. Or simply feeling worse after working out and contemplating if it’s even worth it.
Any physical activity I do has an impact. Whether I’m outside to do some yard work or going on a walk with the family. I never know how much the activity will lower my blood sugars, leading to the frenzy of my heart racing, hands shaking, sweating, and feeling like I seriously will fall over and pass out if I do not eat everything I can get my hands on. How about when a friend or a neighbor asks for my help, ”hey can you help me for 30 minutes moving some furniture?” Of course I can. I’d love to help. But in the back of my head I know this physical activity will likely cause my sugars to drop and start the crappy feeling of going low. But I won’t know when or how low, because every time it’s a different set of variables.
Everyone has stress. Stress from work, family, kids, and just life in general. But with Type 1 Diabetes I never know how stress will impact my sugar levels. Sometimes the stress will cause sugars to stay high for long periods of time, in which I feel light headed and just out of it. Other times stress will make my sugars go low pretty quickly, thus initiating that feeling of panic and blurred vision and extreme hunger. With no warning. And there is no predicting it. It just hormones affecting our bodies, and what a normal persons insulin would do, my body cannot.
So Much Worrying. All the time.Do I work out? Is it worth it? Should I eat that? How will it affect me? Should I go out with friends? Have a drink? Will that make me crash later tonight? Will I have the energy to play with my kids? When should I take my medicine? Too soon before a meal? Sugars crash. Too late. Sugars go high and I cannot function.
Type 1 means having a weakened immune system. We are more susceptible to those colds/flus going around at the daycare or airport. More likely to get skin conditions like acne or dry skin. More likely to be sick longer and take more time to heal from injuries or surgeries. This disease takes a toll on our bodies and we feel it. No matter how well in control we are. We also have to watch the other medicines we take for being sick or having a headache. Acetaminophen like that in Tylenol or cold medicines will greatly impact sugar levels causing them to go out of control. Steroids do the same thing. So we stay away from these.
Just when you think you’ve got the hang of it, your body throws you for a loop and somehow everything is out of whack again. The 3 a.m. blood sugar tests, the exhaustion you feel from a day of highs, the scares of all the complications, and the fight with your own body. It all adds up. It isn’t easy.
It’s a constant battle and we have to learn and overcome every single day. It is manageable. It requires hard work. Most people will not see what it does to our bodies or how it impacts every single thing we do. That’s ok and I am happy to share my experiences to help anyone else out there see the good and the bad, and what its like being a Type 1 Diabetic.
Don’t get me wrong, everyone has their own struggles and it’s more than OK to complain, but when I spent the day battling the urge to faint because my blood sugar was so low, or trying my best to keep moving and finish my day at work or take care of the kids when my sugars are high and I feel nonfunctional and completely lethargic, I really don’t think you getting stuck in traffic on your way to work compares.
I think its safe to say people assume you must be fine because you “look” fine. Not the case. Diabetes is much more than what managing it looks like on the outside. There’s a lot of emotion that goes into it. A lot of thinking, a lot of worrying, a lot of distress. I would love to be more active, go on hikes, runs, do more outside. Problem is activity like that means my sugars might and usually do crash, then I have to eat like crazy, then sugars go high and I feel like crap for hours… is it worth all that?
So often I have to act fine whether it’s at work, interacting with people, or at home with the kids, yet I can feel my sugars are high/low and I feel my heart racing, eyes getting blurry, or just a complete lack of energy. It is hard to explain those feelings, and probably why I never do.
Keep reading to see the many ways diabetes affects our daily lives.
What it’s Like.
(from multiple Type 1 Diabetics)
It’s people telling you to correct your blood sugars over and over when little do they know that you’ve been trying everything you could for hours.
It’s having to go to the doctor every 3 months.
It’s arguing with your significant other over the stupidest things because your blood sugars are high and that makes you more irritable.
It’s wanting your loved ones to know how you feel to know how hard it is; that this isn’t easy but knowing they don’t.
It’s the feeling that no one gets you because everything you feel is invisible.
It’s your friends getting upset with you because you tell them you can’t go out for some reason, but in reality diabetes just has you feeling like shit.
Having scars left that mimic battle wounds. That are placed on the most insecure parts of your body.
The dazed, confused feeling of where am I and how did I get here. This disease not only alters your body but your mind.
The dependency of not just insulin, but medical equipment, devices, meters, and food when we get low.
Its being out with your friends and knowing the one drink you decide to have with them to be social is going to severely affect your sugars later and make you feel terrible.
The blurry vision and the lack of focus. Anytime our sugars fluctuate from high to low this happens.
The anger that seeps through from the rollercoaster ride of blood sugars and emotions.
The tired feeling from doing this for so long and trying to stay strong.
No days off and no vacation.
Having to put on a fake smile every time you have to explain to someone that type 1 and type 2 diabetes are NOT the same thing.
It’s people telling you “you can’ t have that” or “should you be eating that?”
It’s people assuming you have type 2 when you say you have diabetes.
It’s watching people look at you like you’re breaking the law by having candy at random times throughout the day.
Getting upset every time you hear a representative say “your insurance doesn’t cover that entirely so your out of pocket cost will be…”
Worrying if you will wake up the next day because you don’t know how your sugars will be throughout the night.
It’s avoiding anyone who is sick because you don’t want to get sick and have to deal with high blood sugars.
It’s the possibility of ending up in the hospital over a stupid cold.
It’s finding glucose test strips everywhere you could possibly think of.
It’s looking like robotron with so many devices connected to you (sensors, insulin pump, transmitters).
It’s your pump tubing getting caught on something and tearing out and trying not to scream in pain while trying to stop the bleeding.
It’s ensuring you have all your supplies anytime you plan to leave the house.
It’s the fear that it’s too much for a loved one to handle and love you for.
It’s having to be okay with death because in reality, it’s a possibility at any given time with this disease.