I don’t remember my diabetes diagnosis. I remember small things, snapshots, of what happened at the hospital, but I couldn’t give you a full account even if I tried.
I remember the huge walk in closet they had for night gowns, and that I got to choose whichever one I wanted. I remember pulling out the feeding tube out of my nose. I remember playing outside in the hospital parking lot. But that’s about it.
Perhaps that’s because I was only 2 years old? Or that it was so frightening that I’ve repressed it?
My diabetes story started pretty much exactly 30 years ago, when I was diagnosed with Type 1 Diabetes in 1985. Being so young, I didn’t understand what was going on, but I know my diagnosis hit my parents pretty hard. My mother was petrified of needles, but had to give her 2 year old daughter daily insulin injections anyway.
They did the best they could in terms of taking care of me, despite the lack of technology that we have today, and the dietary recommendations that they got for me (and that diabetes patients still get today). Nobody understood at that point that it was the “healthy whole grain” and “five servings of fruit” that made me increasingly worse, needing more insulin and breaking down my body step by step.
When I first started taking care of diabetes myself as a teenager, everything went well in the beginning. That was until my hormones kicked in and started wreaking havoc on everything, to put it mildly. It got so difficult for me to cope with diabetes, in combination with “normal” teenage angst, that I actually stopped caring. Completely.
This meant that I didn’t check my blood sugar at all, and rarely took my insulin. In hindsight it’s no wonder it all got so messed up and complicated, I didn’t get the help or medical support that I needed. By this point, my family and I had moved across Europe, so I didn’t even have my usual support systems to fall back on. In any case, the help wasn’t there when I needed it the most.
For 10 years I kept trying, back and forth, to regain control over the monster that diabetes had become for me, with one try ending up worse than the next. These experiments and trial-and-error based tries had me going in and out of hospital, being screamed at by various doctors, nurses and dieticians because I “didn’t try hard enough”. Dangerously high blood sugars were followed by deadly low ones. And it all left me exhausted, thinking “what is the point”? I felt defeated, lonely, misunderstood and confused.
Fast forward to beyond a few more years of trying and failing, it wasn’t until I re-educated myself to become a nutrition coach that the coin finally dropped. I finally understood how the body really works, what effect carbohydrates have on it (and especially so on someone who doesn’t even make insulin), and that I had been terrorizing my own body with sugar for all those years. In the belief that I was doing the right thing, I had listened to my health care team and believed them blindly when they said that “not eating carbohydrates as a diabetic” was “extremely dangerous”.
I slowly took my health into my own hands, I slowly started reducing the amount of carbs I ate. I slowly started doing my own research on what actually works and what doesn’t when it comes to diabetes. And I slowly started to understand.
Understand that I had been lied to for 26 years. Understand that my body had been beaten up badly on the inside. Understand that I could have saved myself so much pain and suffering, had I only thought a little bit ahead. And, understand that I was in for a rocket ride in terms of my health, well being, blood sugars and A1c improvements.
I’ve honestly never been as well as I am today, 4,5 years after starting to figure things out. I’ve been able to reduce the amount of insulin I take to ⅓ of my previous dosage, my blood pressure medicine by half and my A1c has gone from double digits to under 6%.
Although the food part has been a huge step for me, it’s certainly not the only thing that has helped me. In my opinion, there are three basic things that you need to figure out in order for diabetes to cooperate more: food, lifestyle and mindset. And only once you figure out what works for YOU will you see the results you’re looking for. Diabetes is so individual, every treatment plan is unique.
This is also the reason for me doing what I do today. As a diabetes lifestyle coach, I help other people with diabetes to find their way of living a fantastic life with, and despite, diabetes. (See http://www.hannaboethius.com/.)
My personal journey hasn’t been easy so far. The amount of tears I’ve shed, panic I’ve felt, horrible news I’ve gotten, amount of things I’ve tried aren’t few, and should definitely not be denied. It’s been part of my journey, and it’s helped shape me into the person I am today.
Perseverance, stubbornness, resilience and tough skin are all vital characteristics for living with diabetes. You live and you learn, and you need to be thankful for what you’ve got, but most importantly, you can never, ever give up.
“Life is not over because you have diabetes. Make the most of what you have, be grateful.”
– Dale Evans Rogers