My life out in the open

Yes, my life revolves a lot around diabetes. From the moment I wake up to the moment I go to bed, my mind is constantly involved with how I feel, what I’m eating, what I’m going to be eating.

I’m testing 4-9 times a day. I’m injecting 4-9 times a day, ranging from injecting for a meal, to injecting for a correction, to injecting my background insulin, and injecting for random surprise snacks. When I step on the bike or go out, I have to have all my stuff with me – insulin, sugar, glucometer, alcohol wipes, backup batteries, lancets, needles and bandaids. Before I go outside I have to make sure I either ate enough or my bloodsugar is high enough so that I don’t pass out and cause accidents. When I go to bed, I have to make sure I don’t have a nigh time hypo from which I’ll never wake up just in case I fucked up somewhere during the day and evening.

I have to put up with the horrible feelings of hypoglycemia and hyperglycemia. Shaking, feeling confused, hungry and fog brained, often not immediately realizing you need to fix this NOW, is a horrible way to spend your time when you run low. Feeling exhausted and lethargic, fog brained, unwell, hungry and dealing with headaches is really awful when you run high. It can take hours to recover from these and sometimes they happen even when you do everything right.

I don’t think diabetes defines me, but if I want to be healthy and take good care of myself, it’s a full time occupation and difficult to avoid. It’s on my mind constantly. It can make you weary. I like to share everything about it because it keeps me motivated and pulls me through the times where I’m putting off my injection or struggling with the guilt of overeating (when you count carbs and inject to what you eat religiously even when you’re stuck in anxiety induced binge mode, it’s very confronting to see how much goes into your body).

My view on food has changed dramatically. I’m constantly thinking “Can I eat that? How many carbs? What will it do to my levels? How much fat is in there? How long do I have to wait between injecting and eating?” Whenever people ask about dietary advice, it’s hard to give that from outside the diabetes perspective. (Sorry if I sometimes forget not everyone has to be so mindful of their food!)

A lot of the time, people don’t take care of their diabetes the way they should, or they have learned to hide it from everyone. I’m very open and diligent so I’m sure it can appear as if I’m constantly shoving it into everyone’s faces especially when other diabetics are mum about theirs. But this is my life, and I want to grow old, so I want to make sure I got this and don’t fuck it up. I’m gonna talk about it because it makes up a lot of my day, even if it’s annoying, and it helps me avoid feeling burned out and isolated.

Remember to pace yourself

When your life changes because you want to be healthier or are fighting a condition, it’s almost frighteningly easy to become obsessed with things. One of the many potential examples is counting calories and/or macros.

Yes, both can be incredibly beneficial to making the right choices for your next meal. For diabetics like myself, carbs – ranging from fibers to complex carbs and simple carbs (sugar) – are an important measurement for our intake to avoid the dreaded high blood sugars. A good workout regime is wonderful for your health too. Eating lots of greens is good for you too.

But it’s okay not to be perfect at everything, and it’s okay not to count something obsessively, or push yourself to new limits every single day. You shouldn’t let this lifestyle change become an obsession that rules your entire day.

I notice that I’m becoming increasingly anxious when I’m not checking my blood sugar, and this is a worrisome development. I’m by nature someone who fixates dramatically on one thing and goes to the max, then burns out and drops everything to recover in a corner. It’s why I taught myself not to weigh in every day, or even every week. It’s why I stopped counting calories so I wouldn’t go nuts and starve myself for the sake of numbers. And now I need to learn to let go of my blood sugar values and only check once or twice a week, or if I’m feeling really bad and don’t know why. If I don’t do this, it becomes a source of stress. And stress hormones increase the glucose levels in your blood, so you pretty much always lose!

You need to enjoy your life too, and if all you can do the whole day is fret over missed numbers, missed exercise or whether or not you can eat this single piece of Starburst, then you’re doing yourself a great disservice. As long as you pace yourself and don’t go over the top, it’s totally okay to cut your exercise regime short by 10 minutes today, and do your full regime tomorrow. It’s absolutely fine to have that piece of candy and not check your levels before or after and just focus on enjoying it.

Remember that this is not a race for the finish line. You need to find peace within yourself in order to not give up on meeting your goals. Stressing over what are essentially insignificant issues won’t give you peace, and it will make your journey towards your goals unnecessarily hard.

“Why are you eating candy? Aren’t you diabetic?”

I was minding my own business as usual. My sugar is pretty low at 5.3 and I’m not eating dinner for another 1-2 hours, so I pop a lollipop into my mouth (a Tootsie pop no less, I got some ‘Murican candy!) and go take out the trash. As soon as my neighbor spots me with the lollipop, he stops me and asks with great concern: “Why are you eating candy. Aren’t you diabetic?”

I stare at him for a couple of seconds, firstly wondering why he’s not minding his own damn business. Then I wonder why he never retains any information as I explained this to him before, but all the alcohol and pot he consumes killed off large portions of his brain. So I sigh, put down my trash and go over this again.

“As a diabetic my body doesn’t handle insulin the way healthy people do. When I’m active and take my meds properly, sometimes my bloodsugar goes too low. If I don’t eat within the next hour of that happening, I eat some candy to tide me over until I can enjoy regular food.”

He gives me this braindead stare as per usual, nods and says “That’s good then.”

Besides the frustration of having a neighbor who’s as stupid as this, I frequently realize people know a lot of conditions, but they have absolutely zero knowledge on what they mean. I’m a diabetic and I can’t eat candy freely whenever I want to, but there are certainly moments where I can enjoy it – whether you’re a type 1 or a type 2 or a type 1.5, it’s not off limits at all.

My biggest issue is people not wanting to understand type 1.5 exists though. It’s not as uncommon as is often assumed, but a general consensus among diabetics is that type 2’s are often misdiagnosed and are actually type 1.5’s.

So… what IS type 1.5 diabetes?

It’s also known as LADA, or Latent Auto-immune Diabetes in Adults. In layman’s terms it’s a slow form of type 1 that starts in adulthood as opposed to childhood, and insulin dependency may not occur for many years after the diagnosis. The initial symptoms are often similar to type 2 diabetes, but blood work shows that the body fights the insulin producing beta-cells in the pancreas and is very slowly killing them. Still, not every doctor acknowledges 1.5, and not every doctor tests for it. I was very lucky that my doctor told me, “You’re too young for a full blown type 2 diabetes like this, but also too old for type 1. Chances are you’re a type 1.5, so let’s get some blood work done to confirm!” Despite being overweight and it being easy to blame on my lifestyle, my doctor made sure of it because not everything added up, and she’s awesome for that!

Initially oral medication can help. Metformin for example helps to increase insulin sensitivity in the body and lower the glucose output of the liver. Gliclazide helps the existing beta-cells to produce more insulin to make up for the loss of the other beta cells. This combination has worked wonders for me and my bloodsugar is now largely under control. However, when we have to keep increasing the dosages, possibly maxing them out, it is time for me to switch to insulin because the oral medication is no longer able to do what is needed. This could be 6 years from now, or 6 months – it differs greatly per person, but it’s happening. Some doctors choose to treat this with insulin immediately, but it depends on the person. I’m personally in favor of trying meds first, because the longer your pancreas can do this on its own, the better! But it’s important to talk with your doctor about it no matter what.

This is also why many of us believe a whole lot of type 2’s are misdiagnosed, especially if they’re doing everything right. They eat proper diets, they exercise, they lose weight, they take their medication as prescribed and go to their checkups frequently. Then one day they’re told they have to go on insulin because they’re no longer making any insulin themselves, the meds no longer work and something didn’t work out for them. Besides it making them feel like crap as if all their efforts didn’t matter, following the wrong treatment plan can also have negative consequences on one’s health.

There are still people who try to deny the existence of type 1.5 and this is baffling and worrisome. It’s real. I have the blood work to prove that my diabetes is the auto-immune kind, not type 2. But I’m also on meds, not insulin, and it’s working for the time being. Some refer to this as the ‘honeymoon phase’ of type 1, but I don’t believe it’s the same thing at all.

Either way, if you’re a type 2 and you’re doing everything right and it’s still not working, consider asking your doctor for blood work to test for the antibodies. It may drastically alter the course of your condition and treatment plan – for the better!

Sugarfree buttercake

I like to eat sweet things. I like to bake. Now that I’ve been diagnosed this has become a hurdle.

After some research I’ve found sucralose – an artificial sweetener made from regular table sugar with no calories whatsoever. It tastes just like sugar without the common artificial sweetener aftertaste. At least that’s what the package and numerous websites tell me! It’s suitable for baking too.

I obtained a jar today from the store and will be baking a “boterkoek” today. It’s Dutch for “buttercake” and possibly the simplest cake recipe around.

250 grams flour
200 grams butter
175 grams sugar
1 large egg
Pinch of salt if you use unsalted butter

The proportions vary in some recipes and some people melt the butter, but the idea is the same – whisk the egg, combine all room temperature ingredients into a firm sticky dough, leaving about half the egg for brushing the cake with. Press the dough in a round greased baking pan or dish (24cm/9″ diameter), use a fork to draw a diamond pattern and brush with the remaining whisked egg. Put the cake in a preheated oven at 175° Celcius for 25 minutes until golden brown, use a toothpick to test if the cake is done. Leave it to cool completely in the pan or dish before removing and cutting into small, 5cm/2″ squares. Buttercake tastes better after a day or so. Store in an airtight container or in decorated airtight glass jars for gifts!

It’s a very rich treat, hence the small cut portions, and goes well with some afternoon coffee or tea.

As you can imagine this is a very bad treat for a diabetic. Almond and coconut flour is stupidly expensive in the Netherlands, otherwise I’d try baking with that. As it is I’m going to replace the sugar in this recipe with the sucralose (17 grams) and see if it’s any good. The small portions and lack of sugar shouldn’t have too much of an impact on my glucose levels.

I’ll keep you posted on how it turns out!!