I guess today’s title is a bit misleading. After all, I can’t envision a scenario where having a life-long autoimmune condition would ever be anything but dark. In retrospect, I can’t genuinely say that my life has been absolutely horrible. After all, there have been plenty of instances where my condition has helped me grow, develop and mature faster, given the requirements to stay alive and healthy. It’s given me a sort of perseverance that many don’t have, especially in the face of today’s modern issues. But I would be lying if I said the hard parts aren’t, well… HARD. Throughout my youth especially, I’ve faced a number of obstacles that threatened my life due to Type-1 Diabetes, starting with the actual event that led to my diagnosis, the subsequent coma events in the years that followed, all the way up to my vision and organ issues (most of which I’ve fought my way back from and am maintaining a healthy front).
So, what’s left? Well, in today’s post, I’ll light out some of the most prominent and misunderstood obstacles that I face on a daily basis. This is one of those posts, and I can’t believe I haven’t had to say this in quite some time, that I feel obligated to remind anyone reading that I am not a doctor, I don’t work, nor do I have education as a health professional and the information contained in this post is strictly my opinion, mixed with a minty hint of some materials that I may have found through peer-reviewed medical journals or websites. So, take what you read with grain of salt and bear in mind that not ALL Type-1 Diabetics are necessarily dealing with the same issues that I am (although I can’t imagine that most are not). So, read away and dive into the issues that I deal with on a daily basis…
- Constant Medical Appointments: This one is pretty straightforward and should come as no surprise to anyone. During my childhood, medical appointments were something I viewed as a bit of an inconvenience rather than an obligation. And sometimes, it was actually fun. After all, what kid doesn’t enjoy getting out of school early, even if it’s to hit up the doctor’s office? This was usually followed by convincing my mother that there wasn’t enough time lefty o the day to make it worth going back to class, which meant I could go home and chill. As an adult though, it becomes a little more complicated. Working a significantly busy job, working around all my medical needs it becomes significantly challenging. I usually have outstanding appointments schedule with helps practitioners that include but are not limited to, my endocrinologist, whom I see every six months, my optometrist once a year, ophthalmologist every sixteen weeks for eye injections, dentist for proper gum health to prevent cardiac issues and the occasional visit to my family doctor (although my echo usually refills all my prescriptions for me). Over the years, I’ve adopted a policy of full disclosure of personal observation to my boss. Otherwise, it can become a bit tricky trying to explain WHY I’m always taking medical absences from work. In short, one does not inherently have to. But it does leave a bit of a spurt taste in one’s employer’s mouth and can affect future opportunities. But in short, it makes navigating my schedule on a month-to-month basis extremely difficult.
- The Constant Fatigue: I’m always fuckin’ tired. I can’t overstate this aspect enough. Even when my meds, blood sugars and fitness supplements are well balanced and I have the energy to hammer through my day, exercise and play with my kids, my body is still effectively telling me to stop and lie down, take it easy and rest. Some of this comes with age, of course (I happen to be in my late forties, after all). But an aspect that people tend not to realize is that my body is constantly fighting; fighting blood sugars levels, fighting to stay healthy, fighting ME and all the efforts I put in to stay alive. This can lead to some awkward situations where I’ve found myself cancelling plans because I’m just too beat, deciding that binge-watching a show is preferable to going out to do something and in many cases, I hit the pillow significantly early in the evening, which often takes away time with my wife and children. That sucks on multiple levels but I usually lose the internal battle and opt for increased sleep as opposed to being bitchy, tired and cranky with my family. I do enough of that as it is. But in the past, I’ve damaged friendships and have lost opportunities because I couldn’t muster the energy to respond, which really sucks.
- The Double Standard: This one is a bit tougher to lay out, because in most respects, I have no choice. One of the more difficult aspects of Type-1 Diabetes has been becoming a father. Taylor becoming a parent is normally viewed as a joyous thing, and it certainly has been in my case, it does come with its fair share of challenges. Explaining Diabetes to a child is already a challenge in and of itself. But when your trouble to teach your child to eat healthy and that no, he can’t eat snacks and junk food all day, it becomes difficult when he sees your shoveling Skittles down your throat to treat a low. Then comes the obvious question: “If I’m not allowed to have candy until I’ve eaten dinner, why can you?” From a child’s perspective, this can seem like an obvious double standard; one that isn’t satisfied by an easy “because I’m the parent.” At least with my kids, that shit doesn’t fly. But it can make things difficult, especially since some children will take it upon themselves to revenge the situation outside of the rules. I’ve lost count of how many times I’ve suffered low blood sugar and staggered over to my home office, only to find that my candy stash has been pilfered by one and/or both of my sons. This is not only something disciplinary that I would need to address but it can be inherently dangerous for me. I remember the one night, when I awoke to blood sugars hitting 3.2 mmol/L. I stumbled downstairs and found my box of Halloween candy was nearly empty. I didn’t have enough to properly repeat my low and hoping myself digging through cupboards at 2 in the morning to find something else. Some speeches and punishments may or may not have been doled out the diluting day.
- Increased Preparation and Planning: This one is a personal pet peeve but one that I have to deal with on a daily basis. When you have Type-1 Diabetes, you always need to plan ahead and pack bags, prepare and anticipate all T1D contingencies, even if you’re just running errands at your local corner store. I remember an instance last fall, when I ran out to the mall to hit up a store for a couple of items. I left the house with my blood sugars sitting at 6.2 mmol/L. By the time I had reached the mall, I started to feel off and checked my pump, which displayed 3.5 mmol/L. Are you KIDDING me??? It was a five minute drive! Since I hadn’t had any caffeine at that point, I opted for a normal, sugared energy drink. Killed two birds with one stone. Problematically, it took some time to take effect, during which time I was parked on a bench and couldn’t do much but let my wife know I would be delayed in getting home. It demonstrates an important aspect of living with T1D, that even the shortest trips require certain items to be brought along, including a blood glucose monitor in case one’s CGM fails and some fast-acting carbohydrates to treat any sudden lows. Don’t even get me started on long0distance travel! During my recent trip back to New Brunswick, I had to preplan how much insulin, how many infusion sets and reservoirs I would need, as well as ensuring I had fast-acting carbs to carry with me onto the plane. Nothing worse than being at 30,000 feet and suffering a low, with the flight attendants unavailable to bring you a can of Coke to help. We have a trip to see family coming this weekend and although I’ll only be gone for a coupe of nights and only a few hours away, I’ll have to ensure I’m prepared for any contingencies. A larger obstacle is being in a smaller community where the limited pharmacy presence can result in there being nothing available if I’ve forgotten something.
So, there it is, folks! Just a short list, despite the long read, of some of the “unseen” obstacles that someone living with Type-1 Diabetes will usually have to contend with. For myself, some of these obligations have helped me develop my overall organizational skills, which have carried pump my professional life, which is good. Cause and effect, right? And nothing teaches you better than something that could potentially be life-threatening if you forget. I’ve always quipped that I would survive no longer than a couple of weeks in the event of a zombie apocalypse. This is mostly because once the insulin runs out, I’d be toast, no matter how skilled at survival I may be. But jokes aside, this would certainly apply to any significant disaster. I remember back in the early 2000’s when New Brunswick had a number of long-trucker strikes. Setting aside my personal disapproval of striking as a general action and the opinions that this would bring forth, some of these strike were long enough that medical supply chains suffered and on one occasion, my supply of insulin ran dangerously low, with no alternative.
There’s a significant amount of planning, anticipating and organizing that comes with managing and living with Type-1 Diabetes. Especially if one expects to maintain and extend their life expectancy beyond the usual 20-year shorter lifespan average for folks with my condition. When I look at some of my friends and associates who also live with T1D, I believe I’m well ahead of the curve. But that doesn’t mean that every day isn’t an ongoing challenge that others don’t see. And that, in and of itself, is exhausting and tiring in ways I can’t possibly explain. All part of the great journey of life. Good for thought… ☯️
