Riding the waves – by Tom Startup

For those that can remember it looks like an iPod only chunkier and black, with a rectangular LCD screen and some silver buttons. It fits snugly into the pocket of my jeans, where it sits most of the time, silently, reassuringly, feeding me my supply of insulin. The pump is connected to me by a transparent tube which coils through a hole in my pocket, passes through the no man’s land between my stomach and my trousers and into a cannula located to the left of my belly button. Raising my shirt to examine it in the mirror, the tubing and cannula resemble a pressed, white poppy.

My first week on an insulin pump

I am in the hospital, being guided through the process of attaching the pump. I have just completed the final step of inserting the cannula into my body. I expected pain and discomfort, but instead I feel nothing. I look up at the nurse with disbelief in my eyes. “I can’t feel anything,” I say. She smiles.

The first feeling is one of relief, almost of coming home. Since 2003 when I was first diagnosed I have always injected insulin through my trusty blue pen (long-acting insulin my body needs between meals) and red pen (short-acting insulin to cover meal times). Five injections a day, every day for 13 years: that’s 23,725 injections my poor body has endured. They don’t always hurt – on those lucky occasions it doesn’t I imagine I have ‘missed’ a nerve – but mostly it does, and sometimes it stings badly.

On top of that, repeated injections into the same area in my abdomen has caused the flesh to become lumpy and sore in places.* Now I have the pump I will no longer have to inject (although the cannula does have to be changed every 3 days). The pump drip-feeds the insulin to me all day (my basal) and then at mealtimes I press a few buttons and it pushes a bolus of insulin down the tubes while I start eating. The nurse says people often say they miss their injections. I don’t think I will.

It’s also reassuring to be attached to my own supply of the hormone my body needs. Before, I would leave my pens at home and only take them out when I would have to inject. In the past sometimes I found I wanted to eat but didn’t have my insulin with me, scuppering that plan. Now I always have my insulin with me, wherever I am. If I want to eat, I can eat. Over the years I have suffered from hypos (when my blood glucose is too low) at night, which has often made me anxious about sleeping. Partly this was because I couldn’t control how much insulin my body was getting – it depended on the injection I had hours before. But now with the pump I can programme it to give me just enough insulin at the right times, so I shouldn’t have so many hypos.

The realisation hits me: this isn’t a cure

Sarah picks me up from the hospital and we go home. I feel almost euphoric. It is a fresh start for me. Over the past few months I have struggled with very volatile blood sugars and a sense of exhaustion with my condition. Now I have the best possible equipment, perhaps I can get things under control. The first two days is like a dream: blood sugars like gentle ripples on the surface of a mountain lake. Like the pump, I feel brand new.

But then on the third day I wake up with very high blood glucose and panic: is it working properly? Did I block the tubes in the night? A lack of insulin, if not treated, can quickly lead to diabetic ketoacidosis, a process which can lead to coma and even death. Heart pounding, and hands fumbling, I try to change the tubing and reservoir, but can’t remember all the steps. With the help of a few YouTube videos I get there in the end. But then later that morning I have a hypo while walking around an art gallery. The realisation hits me: this isn’t a cure.

On top of this I am not sleeping well because I am attached to the pump: as I twist and turn I’m scared I’m going to damage it or block the tubing. I start to worry about how I’m going to do other things. You can unplug the pump for up to an hour, but otherwise it must be attached all the time. How can I go swimming? Go to the beach? Do yoga? Have sex?

It’s a life-support machine

By the fourth day I am distraught. I lie in bed and sob, while Sarah holds me. I feel as if I have been diagnosed all over again. When I was on injections I was still able to deny my condition. From the outside I looked normal. There was nothing I couldn’t do, if I was careful. Only when I was injecting was I fully conscious of my illness. But now, with this device attached denial is no longer possible. It’s a life-support machine. I remember our last holiday when I ran and played in the sea with George, making sandcastles and diving into the waves. Now, attached to a machine, I feel as if I have given up that freedom, forever. I grieve for that lost liberty, for my broken body. I feel like ripping it off and throwing it away.

The next day, after a better sleep, I feel a glacial calm. The anguish and grief of the previous day has washed away. I am becoming used to the pump, and now, while writing, I forget it is there at all. My mood, like my blood sugar level, is stabilising. Neither high, nor low, I am somewhere between joy and despair.

Tom Startup is a freelance writer. He tweets at @type1_tiger

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