So apparently “diabetes burnout” is an actual thing, I just found out myself that I’ve had it, and I have been a diabetic for the past 12 years. For a while, I thought I might be burning out myself but this disease, like any other, will wear you down. I know there are plenty of awful conditions in this world, and this one can be manageable, but goddamn diabetes is so unpredictable and fickle. Managing an organ that has failed you all day every day can get real tiring, especially when you do your best to stay healthy and in control.
So here I am nearing the end of my 20s, and just like my diabetes, I feel like I still don’t have a stable hold on my life. That’s why I am dedicating this year to making Diabetes my bitch. I intend to truly explore and my master my diabetes; I know it’s not a skill like kung-fu or gardening, but it’s something I have to live with everyday. It’s my invisible monster, my own beast within that I can control and I need to know that I can control it.
Ever since recently learning about diabetes burnout, it has really put my little hospital visit last year, and diabetes control in general, in perspective. After that hospital visit 6 months ago, my eyes were really opened and some light was shed on the darkside of this disease. I was given just a glimpse of what this disease can do to someone.
The diabetes burnout surely had a hold on me, and for who knows how long before it took me to the hospital for a little thing called Diabetic ketoacidosis (DKA), which it also turns out is not just a little thing in the world of diabetes. It’s actually a diabetic’s nightmare. It’s when a person with diabetes isn’t receiving enough insulin along with the glucose already in the bloodstream so the cells can’t properly function, and in turn the body begins to burn fatty cells for energy, which is not a good thing. Next thing you know, you are in a coma and organs are shutting down, and if you’re really unlucky - dead! All of which can happen, and tends to, within 24 hours.
DKA really isn’t anything to mess with, because it certainly will not **bleep** around with you. It doesn’t care if you eat healthy, or if you are a good person or how **bleepy** your healthcare is, it straight up just does not care. It’s not like it’s a living thing, but in a way DKA is kind of like diabetes’ bigger, meaner, and drunk older brother. Still in the family but doesn’t come around often, not unless you’ve been a bad brother to Diabetes. And if so, he will punish you and he will torture you, just for not paying enough attention or not being nice enough to Diabetes. So a note to all diabetics, don’t ever p*** off your older brothers, who knows what you might have to endure.
That being said, DKA was easily the toughest thing I’ve ever been through, and I truly hope no one ever has to go through such a terrible experience. I can’t believe how common of an occurrence this is for some diabetics, and it was such a bummer to hear that while talking to some of the staff while in the hospital. But as I said, diabetes burnout is a real thing, and it can consume any person with diabetes. The term ain’t no joke, it really can burn someone out to the point where they truly DGAF and won’t take care of themselves; and that’s where DKA strikes, at a diabetic’s lowest.
Now I wasn’t at my lowest when DKA struck, I was probably at my all time highest (blood sugars) but I was going through some diabetes burnout at the time and had no idea, I just thought I was a little hungover or depressed as usual. I woke up with high blood sugar and didn’t know it, and like a bad diabetic, I didn’t monitor my glucose as closely as I should’ve that day (...or in a while, hence diabetes burnout). I just went about my day like a normal human being making breakfast and cleaning up, next thing I know it feels as if my stomach is fighting itself. I tried to find solace with a movie on the couch, one of my favorite things in the world, but not even funny man Ben Stiller could help me get me through this icky feeling. I made it about 15 minutes before getting sick for the first time that day, the first of many many times that day. I remember with all the stopping and starting of the film, it took me twice as long as the actual runtime to get through the movie (3+ hours, approx. 214 minutes).
It was the start of a brutal, hellish experience I surely was not ready for. Actually, I don’t think anyone can quite be ready for DKA. It’s an experience that is extremely punishing, especially when it’s happening to you and you don’t even know why. You can barely move. You can barely drink fluids. You don’t want to bother with checking your sugars. And you can’t even think about eating in fear of throwing it back up. All you should do is just seek medical **bleeping** attention, because all you’re really going to want to do is curl up in a ball and wish to not throw up again or see the world anymore. OK, maybe that last one is a bit of an exaggeration, but that’s how it felt for me. I was uneducated and a silly diabetic for not even thinking whatever this was was attributed to my Diabetes. I honestly thought I had complete control, and was owning it; I thought whatever this was was just a little food poisoning or a bit of dehydration. Who knows if I actually had those as well, either way it was just a precursor and a warning sign as what was to come.
I remember after each throw up, I would feel another stomach pain, usually within 10 minutes. From my internet research and paranoia, I found out that it was bile seeping into my stomach and it was only a matter of time before that bile had to make it’s way out of my belly, usually 30-45 minutes. So more or less it was an hourly recurring barf fest. I wonder how many times I actually vomited? I really should have kept a count. It’s funny though, ever since going through this experience, whenever I have high blood sugar I can really feel it in the pit of my stomach, just like that small deep burn I’d feel before eventually throwing up. Oh the little things we learn about ourselves in life.
After hours and hours of vomiting, and not being able to sleep through the night because of the constant stomach aches, I began to realize I couldn’t keep anything down, not even Gatorade. The sun was beginning to rise and I wasn’t getting any better, this had been going on for a good 18 hours before seeking medical help. Which is way, way too long for anyone to endure such a torturous experience. Upon trying to leave and find a hospital to go to, the sun was starting to heat up the city and I was finding it hard to walk, let alone think. I was not doing so hot and seemed to be rapidly declining. By the time I got to the hospital, I don’t think I could stand up anymore, it was such a strange and terrible experience watching my own body fail me like that - I felt completely helpless.
I remember the nurse asking me questions, and I could barely speak. I was just so damn thirsty and I couldn’t open my mouth. I was finally starting to hold down water, but they wanted the IV to work it’s magic on me. I had to damn near beg them for some ice chips just to wet my whistle. I remember getting the hiccups after being administered with the IV, and I have never hated hiccups so much in my life. Because it turns out vomiting non-stop for an evening really works your abs, and hiccuping goes straight to your core, so it was like a kick in the stomach every time, and this went on for a good 20 minutes. It’s not like diabetes and DKA weren’t kicking my ass already, and I thought the earlier stuff was the tortuous part. I highly recommend you never vomit all night and get the hiccups, you will absolutely hate life.
After getting into the ER, and going through all sorts of tests and talking with various people in white coats and getting hooked up to so many different tubes, it was clear this was something more. They told me if I hadn’t seeked medical help that day, my organs would’ve started to shut down. What a frightening thought, I’m scared to even think, or even open my mouth about what might have come next. Thankfully I had gotten there when I did, I’m not sure I would’ve lasted much longer. Crazy, crazy, crazy!
And while food poisoning and dehydration may have helped kick this whole accidental adventure off, the real problem was that I wasn’t receiving insulin the way I should have. Strange enough, the culprit was the simplest and most curious of causes... the line of my pump - not directly though, but on the catheter inside my body. In the 10+ years using a Medtronic insulin pump, I have never had a kink on the inside of my body at the site, nor have I ever heard of this happening. But I still have the site catheter if you want to see, you know what, I’ll actually just post a picture here. Check it out…
And there was no way to know that my site could have been like that. Maybe if I would have checked my sugars more that day, but I would have had high glucose regardless because I wasn’t receiving insulin properly. I just might have changed my site sooner, even though I thought I was safe because I had just changed it the night before. I didn’t know it at the time, but I feel it was going to happen no matter what, especially with the way I was managing my diabetes, it was only a matter of time. Living with diabetes requires extreme awareness, surviving DKA requires a trip to the hospital.
Diabetes is somewhat of a Catch-22, no one can make sense of it and there is no reason to, it just happens one day and you have to learn to live with it, or else… you’ll ultimately suffer. Some days it feels as if you are being bullied; it’s like losing a fight you didn’t even want to be in in the first place. Some days I’m not even sure who I am, I’ll wake up feeling like someone else completely and with such intense mood swings I can’t explain, it’s weird how it really can be hard just to feel like my own self some times.
You have to choose to embrace it, or come to realize that it won’t go away. There really is no other way of coping with this disease I’m finding out. You can’t make diabetes go away, all you can do is plan and get better at it or inadvertently choose to fail at it. Sure it is easy to let yourself go, but at the same time, you’ll eventually find it’s just as difficult to pick yourself up. The best way, I’m finding to make it better, is by choosing to accept it as a piece of who you are - only then can you truly know who you actually are and feel completely whole as a person.
“The biggest gift a patient with diabetes can ever receive is a way to make diabetes itself the road, to find meaning in living with diabetes.”
-- Victor M. Montori, MD, MSc
Professor of Medicine and Consultant, Division of Endocrinology and Diabetes
Ever since coming across that quote (in The Book of Better: Life with Diabetes Can't Be Perfect. Make It Be...), that's what I've been doing - finding meaning in my diabetes. I feel like every person with diabetes is going to go through Diabetes Burnout at some point, it’s inevitable. Now I don’t have any scientific evidence to back that statement, but diabetes is such a drag and can easily get anyone down; it’s just a matter of staying motivated and determined to get through all those never ending frustrations before they turn into a burnout.
I don’t think DKA makes me a bad diabetic now, in fact I kind of think it has and is still making me a better person with diabetes. Actually experiencing DKA and seeing firsthand what this disease can do, which makes me never want to go back to that place, especially after reading/seeing/hearing what this disease can do to someone long-term. Those long-term diabetic complications frighten me, and I’m sure anyone else with eyes and the ability to read. I don’t ever want to lose my vision or my toes, or **bleep** a whole leg! I can’t let that happen, I won’t fail my body even if my pancreas has already failed me.