‘Each hyper is like some horrible omen of future pain’: the diary of a type-1 diabetic

Sunday, 10.14am. I’ve been in the garden raking up the autumn leaves when suddenly I start to feel hot; a hollow ache appears in my belly and my legs feel like spaghetti. Like being underwater, any movement is exhausting; I can hear my children playing, but the sound of their voices is muffled, warped and seems far away. I slump down on the garden bench. I’m diabetic and having a hypo – or hypoglycaemic episode – when my blood sugar has dropped below the normal range. Like when your phone battery is low and you can’t make calls, in hypoglycaemia the body acts to preserve energy for the vital organs, cutting the energy supply to the rest of the body. I desperately need sugar so I toss some jelly babies into my mouth, staring into space. Fifteen achingly slow minutes later I feel my consciousness bob to the surface once again.

In a normal body, the pancreas — a purple, lumpy organ tucked behind the stomach — works in a similar way to the air-conditioning in a hotel room. After a meal, as the blood glucose rises, the pancreas automatically releases insulin to bring it back into normal range. Equally, if the blood glucose is too low, the pancreas reduces insulin to prevent hypos. But in an untreated diabetic, it’s as if the air-conditioning is bust; the blood glucose level just goes on rising to dangerously high levels, because the pancreas can’t produce insulin.

Back in 2003 something still not understood by scientists caused my immune system to mistake my pancreas for a foreign body and start attacking it. Gunned down by friendly fire, my little purple genius collapsed and died. The day my GP gave me the blood results confirming a condition I already suspected — type 1 diabetes — my blood glucose was at the dangerously high level of 29. My skinny body, unable to absorb the glucose in the bloodstream, was starving — like an anorexic at a feast. Untreated, this can lead to organ failure and ultimately death.

The basic treatment for type 1 diabetics is therefore to equip them with insulin — which they inject in proportion to the carbohydrates they eat — to keep their blood glucose within the normal range. While this saves our lives (no mean feat), it is akin to opening and closing a window in your hotel room to keep the temperature right: a crude solution at best. Consequently, each day I surf great sugary waves with my trusty tools of blood tester, carbohydrate counter and insulin pen, occasionally sweeping into the beach majestically with my blood glucose in normal range, but more often than not being tossed wildly between hypoglycaemia and hyperglycaemia (too high).

Sunday, 5.36pm. Dinner time, and while my children George, three, and Chloe, six, chase each other with plastic swords and my wife feeds the cat, I unzip my blood-testing kit: a small black object about the size of a pencil case. I inspect the tips of the fingers on my left hand, pocked with little scabs from thousands of tests — each pad like a hilltop strewn with gravestones seen from the sky. Choosing the least maimed finger, I press the tester against it and trigger the mechanism; a sharp lancet bayonets into my flesh. I feel a familiar stab of pain. Squeezing my finger, a bead of burgundy blood seeps out which is slurped up by the thirsty tongue of my test strip. Three, two, one, the machine counts down to the reading: 14.1 – hyperglycaemia. Bloody hell, I think. ‘Dad, can I have some sweets?’, Chloe asks.

As the doctors never fail to remind you, high sugar levels over time damage blood vessels and organs throughout the body. Like a motorway network, worn out by careless driving and excessive traffic, because blood flows to every part of the body, high blood glucose can wreak havoc in the long term. It starts with the fragile vessels in the eyes, the feet and the kidneys, but can affect nearly every major organ, potentially leading to blindness, kidney failure, even amputation. While I am currently mercifully free of such complications, every hyper is like some horrible omen of future pain and indignity. ‘No, you can’t have sweets! It’s dinner time,’ I snap.

I put bowls of pasta on the table and while the rest of the family tuck in, I weigh my portion and, totalling up the carbohydrates in my head, input it into the app on my phone which calculates my insulin dose. I sit down and, with the nimble fingers of a drug addict, remove the syringe, dial up the clear liquid, squirting a little into the air to remove bubbles, and push the needle into my backside. I feel a sharp prick and then a spreading tightness just under the skin where the insulin pools inside the fatty tissue. Finally, I tuck into my food while the insulin begins to work its magic inside my body.

10.12pm. Falling into bed and feeling drained from the hypo earlier in the day, I close my eyes and, with my heartbeat gradually subsiding, take a moment to mourn and give thanks to my pancreas. My treatment keeps me alive, but it is no match for that modest and inscrutable little organ nestling next to the spleen. Pancreas, I miss you. Diabetes is a continual reminder of the frailty of the body but also its astounding, mysterious and effortless brilliance.