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15/11/2015

T1D Looks Like Me - My story on Type 1 Diabetes

T1D Looks Like Me - My story on Type 1 Diabetes
If you follow me on Instagram you may noticed my post about "T1D Looks Like Me."

That's right folks. Since december 2005 I have diabetes type 1. I warn you, I deal with it being sarcastic and cynical. Here's my story.

To make sure this post isn't too long, I shall try to be brief about certain things, but take it from me that I could talk about it for days because it really does take over your life.

What is T1D?
Type 1 is an autoimmune disease. My pancreas does produce insulin, which is an hormone you need to turn your food into energy. But those insulin producing cells are being attacked. There is no cure for it, and if you have it, you either need to inject insulin or an insulin pump, like I have.

Insulin Pump
This little device, which is often called a "recoding device, ipod (really folks?), beeper" and so on by strangers, is with me 24/7. The only moment I am not connected with it, is when I shower. It isn't waterproof, and well.... I don't wear a belt or jeans when showering, so I cannot hook it somewhere.
The choice wasn't mine, but it is better for me then injecting 4 times a day. I can control it better, and my cynical reply is "pump or drown" (get it?) (Dutch: "pompen of verzuipen")

The horror of daily injections and needles.
The bandage you see is an infusion set, every 2 or 3 days I place a new one to try to prevent my stomach from getting irritated. You can also place it on your butt, the back of your arms and your upper legs.

Next to wearing that, I check my sugar around 10 times a day, by using blood from my fingertips.
I need to count my carbs, decided what I am going to do (e.g. lazy or try and go running? Stress? Am I ill?) and adjust it accordingly.

You are really a scientific project, because every day is not like the others. What works for me, might be a terrible idea for someone else with diabetes.

Check, check, double check.
I have regular check ups, every 3 months. I need to check my eyes every other 1,5/2 years. It really affects everything. From minor things like wearing a dress (were do I put my pump?) to major things, like the complications you can get if you don't monitor your diabetes good enough/or if you sugars are just out of control.

But it isn't as easy as that. If it would be equal to the effort I put in, my sugars would be glorious all day. But that's far from reality.

I lug arround extra things, like my tester, an extra infusion set, a sh*tload of food and drinks. (see for yourself here: What's in my bag - Diabetic Edition) If I want to go out for a run but my sugar is too low, I can't run. If it's too high, I can't eat.

Some people say diabetes is like a "second full time job".

You can't see it.
And it's not something you can see either, except for my pump. So people do not understand that sometimes I feel, really, really bad and must drink sugar and stay put until my sugar is normal again. For example, when my bloodsugar is low, which can be very scary, I feel tired, my mind get's foggy, vision blurry, getting sweaty and my English? Well, forget it. I need to test my sugar, sit down, drink and eat, then wait, and later I feel a bit better.

When I'm too high, I need to drink, getting hungry but can't eat, need to pee a lot and so on.


Yesterday was World Diabetes Day and seeing the tag of "T1Dlookslikeme" pushed me over the edge of sharing my story. I don't know anyone with diabetes around me, so I do long for someone who understand exactly how I feel when I say "I'm too low" or what it's like to be busy 24/7 a day with your diabetes.

So, do you want to talk? Do you want to ask me something? Please do!


If you want to know more, please ask or I can write a second post before it get's too long.

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