Stop the ride, I want to get off

For some people, a diagnosis of Type One diabetes is more easily subsumed into their lives. For friends who knew someone like this (or knew someone who had been diagnosed for many years) watching my story unfold must have been undoubtedly confusing. As with many things in my life, the pattern didn’t follow any norm, I didn’t fit into a box and things didn’t settle down by Christmas. I think I drove my nurse nuts.

I tried, I really did. I wanted my life to return to normal, for the state I was in to pass on, move along, to catch another bus. And I was indeed in a state. Some days I couldn’t walk the length of myself. In the very early weeks, life revolved around my in-the-middle-of-renovation-house. I relied on help from my ever supportive Mum and Dad. I would’ve been lost without my husband. *Cue Oscar-type-tears*.

With so little energy and no clear idea of when I might be ‘better’, I had to make the hard decision in those first few weeks to give up some of my charity PR contracts. As any sole trader knows, being sick and self-employed is no fun. The guilt of not achieving is awful. Frustration set in. My defective immune system not only killed my beta cells but it was ruining my livelihood.

For those clients I did keep on, I continued trying to work, on top of which I attempted (badly on days) to look after my family, and to live my life as it had been before. But with the daily up and downs of blood sugars, the mood swings that these fluctuations brings and hospital appointments coming out my ears, my life felt far from normal. It was like I was trying to put its pieces back together but some eejit had mixed them all up with another one when I wasn’t looking. My new normal wasn’t working for me and to be honest I didn’t like the cut of its jib.

I thought I was doing all I could. I sat with an attentive ear at my hospital appointments. The nurse said she’d never seen someone with so many notepads. Nurses and dietitians continued my diabetes education, explaining the impact of carbohydrate on your body, what insulin is and what it does, what impacts on your blood sugars, for example not only food but activity, stress.

As well as regular face to face visits, there were daily calls to the Diabetes Specialist Nurse. I’d call out my waking, pre-breakfast, pre-lunch, pre-dinner, and pre-bed numbers, like a game of Weird Bingo – 12.7, 13.7, 10.6, 12.6, and the winner is…..! She’d advise me on any changes to my insulin regime. I compalined to her that my life was out of my control.

I didn’t like that one little bit. Looking back, it was the lack of knowing what it all meant. But my brain was burling and I was finding it hard to keep a thought.

Things refused to settle, diabetes refused to be subsumed into my life. My bloods continued to run too high (8 – 20mmol) and I started to have this debilitating sickness most days which came on from 9 - 10am, and often meant having to lie down until it passed.

Then the hypos started. I had my first ‘mock’ hypo five days after diagnosis. This is where your bloods have run so high for so long that just being at a lower level (but not ‘official’ hypo territory of 3.5mmol) can bring on the symptoms; heart racing, shakes, cold, tingling, tunnel vision, irritability. These symptoms can be different for everyone. But as my bloods lowered from pre-diagnosis highs in those first few months, there were more hypos.

The Diabetes Bingo calls to the nurse continued. She continued to make changes to my insulin levels but things weren't getting any better. Too high, too low, and the rollercoaster didn't show any signs of stopping. It was starting to feel like a long ride.

Looking back now, with a year's knowledge under my diabetes belt and a week-long DAFNE course, the nurse's incremental changes make sense. The attempts to keep me on a reasonably standard set of insulin injections, requesting I eat three good meals, no snacks, and record my meals, make sense. They wanted to try to see some 'patterns' in my blood sugars to try to work out insulin requirements. But to me, feeling awful on a daily basis and struggling to adapt to having to take each day hour by hour, it was excruciatingly painfully slow. Why couldn't they hurry up and fix me, I'd wonder? Was there something else wrong? What was happening to my body? All these questions brought much instability and irritability (as I'm sure my family, close friends - and medical staff - will bear testament too). I felt lost amid a world of numbers, wishing desperately that I knew what they meant. I've always hated numbers.

This status quo continued until the nurse called me in December - almost two months after diagnosis - to announce she had a New Plan. I hoped it was a cunning plan. More importantly I hoped it would stop the rollercoaster ride. I was beginning to get very dizzy.