Living with Type 1 Diabetes

Today is World Diabetes Day.


I dislike this poster.

Not because of the message it is spreading, but because of how it makes me feel. You see, there are those two little words that I would prefer not to think about. Life-Threatening. They are horrible words to see in relation to a disease, especially when you have it. People with diabetes can look like the picture of health, so much so, that they sometimes tend (consciously or not) to forgot that it is a life-threatening and serious illness. I am guilty of it.

Here are a few statistics pulled of the World Health Organisation website.

About 347 million people worldwide have diabetes. It is estimated that 10% of those have Type 1.
Diabetes is predicted to become the 7th leading cause of death in the world by the year 2030
Diabetes is a leading cause of blindness, amputation and kidney failure
In 2012 diabetes was the direct cause of 1.5 million deaths.

It doesn’t paint a pretty picture does it? That’s why I don’t like the poster. Because it reminds me of all those things. It reminds me that I am all those things.

There are three types of diabetes. Type 1, Type 2, and gestational.

I have Type 1 which can also be referred to as juvenile diabetes, or insulin dependent diabetes. It’s an auto-immune condition where the pancreas doesn’t make enough insulin to transfer glucose from the blood stream into the cells that convert it to fuel for muscles, or store it as fat. There’s no cure for it (yet), no prevention method, and in fact doctors can’t even agree what causes it. But it can be managed.

I was diagnosed in my late teens. I had been to the doctor many times complaining of feeling tired. He simply told me I was doing too much and I needed to slow down. I did. But I was still unbearably tired. There were times at work where I would fall asleep on my keyboard. Of course, to counteract these feelings of tiredness, I consumed cans of energy drinks filled with sugar. All they did was make it worse. I remember my mother coming by my flat only to find me asleep in the middle of the day. I had vacuumed the house and needed a three hour nap to recover. It wasn’t until a friend of mine tested my blood sugar levels that it was discovered I had diabetes. Normal blood sugar ranges are between 4 and 8 mmol/L. I registered as ‘high’ on the blood meter which meant my sugar levels were above 32 mmol/L. No wonder I was so tired. The amount of sugar in my blood stream made it so thick my body was exhausted from attempting to pump it around my body, and my muscles and brain were starved from lack of fuel.

The doctors tried me on pills, assuming I was type 2, but when the tests came back revealing I was a type 1, I was moved to insulin dependent. It was a strange sensation being told I had this disease. I remember one doctor sitting me down and asking how I felt about the diagnosis. I thought it an odd question as I didn’t see how it mattered how I felt about it, the fact was I had it, and there was very little to do other than learn to deal with it. And that’s exactly what I did.

I had to learn how various foods affected my blood sugar levels. For example a piece of chocolate cake would in no way lift my sugar levels as much as a bowl of pasta. But other than a few adjustments to my life, in the way of testing and recording my blood sugar levels and injecting myself with insulin, it didn’t affect me too much. Or so I thought at the time. I would brush off concern in an attempt to appear as normal as possible. I never hid my diabetes. I would inject myself in front of others, (sometimes much to their disgust) test my blood sugars, and that was about it. I never changed my eating pattern, never thought I couldn’t be involved in anything I wished to be involved in, I just carried on as normal.

It wasn’t until years later that the monotony of having this disease got to me. It wasn’t that I felt ill, it wasn’t that something in particular happened, it was that I was sick of it. I was sick of pricking my fingers. I was sick of injecting my stomach. I was sick of not being able to go to bed without reading that little meter first and checking it was safe for me to go to sleep. I was sick of not just being able to put food in my mouth without thinking of the affect it would have on my body. So there were times I would forgot all those things. Instead of testing my blood sugar levels 4+ times per day, I would test them once. Instead of watching what I ate, I stop caring. As long as I took enough insulin and kept my blood sugar levels okay, it wouldn’t harm me. This only occurred on occasion though, mainly I was well controlled and aware of what it was doing to me. And despite my avoidance at times, I knew that what I did to look after myself may not always affect me now, but it certainly would later in life.

A hypo, as it is called, is when the blood sugar falls to a level usually below 4 mmol/L. There are warning signs that this is occurring. For me, it can be as little as one thing, or an accumulation of many. One of the first signs is usually an inability to think. It’s like my brain clouds over, but even as it’s happening I am aware of it, aware that my brain is not functioning in the way it normally does. Other signs include tingling lips and trembling hands, feeling hot and sweaty, or cold and overwhelmed. And if left untended it results in a sickly feeling of dread as you know you are getting close to loosing control and awareness of your own body. This can lead to seizures and comas. The desire to lift your blood sugars can manifest so intensely that consuming food becomes a life line. Literally. But if I let those urges overtake me, I can consume so much sugar, that a hour or so down the track my blood will be thick, and I will enter the opposite state known as a hyper. Saliva will turn to syrup in my mouth and my body will try to counteract it with a immense desire to drink. And then there is the tiredness. Overwhelming tiredness.

Only once have I gone into a coma. Usually, I am sensitive to hypos but this one I had no indication at all. I had spent the day at the park with a friend and our children. When I arrived home I had a headache and said I was going to have a quick lie down to try and shake it before dinner. That’s the last thing I remember until I woke up around an hour and a half later. I thought I was dreaming. There were ambulance officers, my mother, and my husband, all hovering in my room. The sun was lower in the sky and the windows were open which struck me as odd. I couldn’t speak. I couldn’t move. I couldn’t do anything but lie there. My mother spoke to the ambulance officers telling them she thought I was now conscious because my eyes were following her as she paced at the foot of my bed. Finally, I was able to lift myself out of this state long enough to utter one word. ‘Dream?’
The ambulance officer shook his head. No, this wasn’t a dream.
I was in a bit of a mess. My body’s reaction to the coma was to empty all my stomach contents. Eventually, I made it into the ambulance and then onto A&E. I didn’t stay long at the hospital, my body was still reacting rather violently to the ordeal and they considered me too sick to stay. Those were their words, not mine. I was petrified to go home. What if I fell asleep and never woke up?

After that, my outlook on diabetes changed. It introduced me to a part of my disease I was unacquainted with, and it was a part I didn’t want to become reacquainted with anytime soon.

Now, I’m a little less blasé in my approach. I’m one of the lucky ones. There are people out there who have to deal with so much more than I.

I learn more about myself and my disease with each passing year. I realise now, it’s not simply something I have to deal with, but something I have to live with. And unless they discover a cure, it is something I hope to live with for many, many years.