Diabetes & The Long Run

When you’re first diagnosed with Diabetes, it’s a major shock to the system.

The questions are endless. What do I eat? What medications do I have to take when? I have to inject myself several times a day?! What the what? I didn’t sign up for this!!

But what happens after living with diabetes for a long time? How does it feel? How does one cope? Why doesn’t one just give up?

Technically, this year marks a series of “jubilees” for me and Diabetes.

It’s been 30 years since my diagnosis this year. 26 of those I spent on a clueless treadmill/roller coaster without a mission and without a cause. The last 4 have been the best ones, so far, starting with me radically changing the way I ate. I’ve spent 28 years with around 10 injections a day, 2 years on the pump. 1 year with my BFF Dexter (my Dexcom CGMS).

Anyway, I want to focus on the first one of these – 30 years with diabetes.

Living with diabetes for 30 years is like living with the most loyal companion (or enemy, depending on the day) you’ve ever encountered. It never leaves your side, and you never get even a second to yourself.

It takes a lot to get used to living with it being a part of you. And, because it’s always evolving, dynamic and on the move, it’s sometimes difficult to keep up with it. Oh, you don’t react well to gluten anymore? Ok, let’s change that. No dairy either? Ok, well, bye bye cheese. Caffeine makes you hyper react? Ok, decaf it is. And that’s just talking about a few food things, completely disregarding certain forms of exercise, timing of medications, or reactions to certain situations.

It’s a silent friend that never talks until it screams. And when it does, it screams loudly. Scary lows, annoying highs, and the possibility of losing a limb or your vision.

The awful feelings and the taste of glucose tablets (or orange juice when your life depends on it, for that matter). Lengthy doctors appointments and the endless needles. Hospitalizations. Advice you should have never followed, other advice you should have followed from day 1. To mention a few.

There are so many things that are so bad with this disease. Horrible, in fact. But there are also things I would have never learned if I hadn’t had this Constant Companion of mine.

It has taught me discipline, timing and humility. It has shown me that life is here to be lived, not to be wasted. Life is fragile, don’t take it for granted. It has taught me about the importance of self-love, no matter what happens. It has helped me see how strong I truly am, “this too shall pass.” I’ve realized that being stubborn isn’t always a bad thing; it can even help you sometimes.

So, what keeps you going throughout the years?

You simply have to. You have no choice but to buckle up and try to enjoy the ride as much as you possibly can. Until that cure comes “in 5 – 10 years”.

Nothing gets better by ignoring diabetes. Trust me, I know.

The mental part of living with diabetes is difficult from time to time. There’s no point trying to sugar coat (ha!) that.

In my teenage years, I didn’t want to have diabetes. I was angry, disappointed at life and everything felt like a huge burden without any light in any tunnel.

Crap endocrinologists, the wrong advice and general teenage turmoil made me ignore diabetes “for a while”.

This “while” made me loose almost everything; my parents, family, friends and myself. And it almost cost me my life.

“Nothing works, why bother?”, I remember thinking. But it didn’t make diabetes go away. Rather the opposite.

Time and again diabetes would show up, scream loudly at me for ignoring it and smack me straight in the face. I was in the hospital from passing out on the street, and other times because I was in a diabetic ketoacidosis (DKA), close to death. And everything in between.

Once I got my proverbial shit together, it still took me years to get back to the excellent care my parents had once given me. Many, many trials and errors, wrong paths and terrible turns followed. As soon as I finally thought I had a foot firmly on the ground, the carpet was pulled out under me once again.

Luckily, I managed to find a road leading towards my path.

Diabetes IS a part of you, whether you want it to be or not. And it’s up to you to find a way to work with it in a way that works for YOU. It has to become second nature to you to check blood sugars, (gu)es(s)timate carbohydrates in a meal, take your medications and to accept your (new) reality. Not to mention finding the small things that make you feel better.

For me it was a long-winded road, the batter part of 26 years, to get to the point where I am today. And I still regularly find out new things about my life with diabetes. It’s a disease that keeps you on your toes, that’s for sure.

You cope because you have to. You don’t give up because it’s not an option. And just for being in this position, you deserve a huge medal! But along the way, you may just find a wonderful path through it all that is made just for you.

What are your biggest struggles and questions when it comes to diabetes? Let’s discuss in the comments below.