Karen’s Story

My Life with Diabetes

This text has been adapted from a PROUD narrative

Out of the Blue

I was ten years old when I was diagnosed with Type 1 (insulin-dependent) diabetes. The day started off just like any other day; I went to school as usual, and was totally unaware that anything was wrong.

It was rare for the headmaster to interrupt classes, so it seemed very bizarre when I was summoned out of the room, and then told that my parents were here at school, and we were going to look at a new house! As we left school, I was informed that actually we would be going straight to the hospital because I wasn’t very well. That was news to me! What on earth was going on?

I arrived at what was then North Tees General Hospital to be told that I would be staying for a fortnight. It was all organised! By this stage I was very confused, and had difficulty working out what was real and what wasn’t. However this turned out to be just the start – there were more revelations to come, which would further add to my befuddled state of mind…

There was another girl, newly diagnosed with diabetes, in the bed diagonally opposite me (Rebecca Jennings or Jenkins? What happened to you?). We went through much of the initial learning processes together, which helped me enormously.

We learnt how to draw up insulin and inject ourselves, and how to divvy out meals into carbohydrate portions.  We had a supervised hypo, so that in theory we would know when it happened ‘for real’ (I remember racing up and down the corridors of the children’s ward on little bicycles – they may have been tricycles? – that one pedalled with one’s arms…)

I left hospital armed with a glass and metal syringe and a few needles, plus a little chemistry set for testing my urine. I was almost as bewildered as when I had arrived – but nevertheless, I was pleased to be going home.

Test Tubes and Turmoil

My whole life had been turned upside down and the weeks following diagnosis were to be dominated by a steep learning curve.

I had to have an injection twice a day – and what a palava that was in those days! The heavy glass and metal syringe was stored in methylated spirit; the metal needles were also re-used time and again, and, in comparison to today’s short sharp microfine needles, these were long and blunt. The injection was comprised of a mixture of long and short acting insulins, and these were drawn up into the syringe from separate vials (small bottles). The short acting was always drawn up first, so that it didn’t get contaminated by the long acting… To further complicate matters, the insulin was not manufactured at “U100” strength at this time, so the numbr of units in the dose didn’t necessarily correspond with the worn marks on the syringe…

In addition to the insulin injections, I also had to test my urine three times a day before meals, and before bed. The sample was collected in a cup. 2 (?) drops of urine were added to 3 (?) drops of water in one of the test tubes. The other test tube would contain 5 (?) drops of water – this was the ‘control’. A “Clinitest^TM tablet” was dropped into each test tube. The tubes fizzed right up to the top and got very hot. The liquid contents then settled, turning either a brilliant blue or a shade of green through to yellow or orange or brown, depending on how much glucose was present in the urine. The final result was noted down on the chart that came with each bottle of Clinitest^TM tablets.

Experiments

In the midst of the turmoil, I discovered an exciting new world – that of biochemistry. Intrigued by the fact that Clinitest^TM tablets could do amazing things to a few drops of liquid, I began to experiment. I was fascinated by the heat generated in my little test tubes, and by the different colour changes that my urine would elicit. Soon I was adding all sorts (!) to my samples, eager to find out how much of what would change a ‘negative’ to a ‘1 per cent’ or a ‘2 per cent’. Diabetes had started to shape my interests.

Real Life Diabetes

The advent of the blood glucose meter was a blessing for people with Type 1 diabetes. Within a year of being diagnosed I had been given a blood glucose meter, and my experimentation turned to real-time. It was easy to find out how food, insulins and my lifestyle were interacting. I had two sets of records – one for me and one for ‘them’. One documented what I actually did. The other was carefully composed and detailed what I was ‘supposed’ to be doing; I had become shamefully adept at lying. I knew that I wasn’t alone in my approach. Indeed, it was common knowledge amongst us children with diabetes that parents and the medical profession had no idea what we really did(!) I remember one summer camp run by the then British Diabetic Association, I was aged twelve at the time. Whilst discussing hypos in the dormitory we agreed how difficult it was to stop eating when you were low. One girl admitted that she could eat up to 70g of carbohydrate when she had a hypo. She then confessed that she would sneak an extra injection in to ‘hide’ the fact that she’d eaten so much. “What a good idea,” I thought.

It wasn’t long before I’d worked out that I could effectively design my diabetes regimen around my lifestyle, and I could even do things differently on different days and still get ‘good results’. The two sets of records merged into one – the blood test results were no longer made up. I still didn’t write down what I actually did, that would have been frowned upon. But at last I was in control, and so were my blood glucose levels, and I could be seen to have come to terms with my diabetes – indeed, I had.

For a while this seemed acceptable; I was judged by the numbers and they were good and true. So I struggled through adolescence and early adulthood, continuing to experiment, and learning all the time. I progressed from clinical biochemistry to medical research, pursuing my interests in diabetes-related subjects. However, I felt unhappy in myself.

Prescriptive Care and Judgemental Attitudes

As I talked to other people with diabetes and members of the medical profession, I became increasingly aware that the prescriptive approach to diabetes care was ineffective, destructive even. I had to educate others! I retired the lab coat and my biochemistry knowledge was fine-tuned to diabetes-related metabolism; combining that with personal experiences I started to write about what I knew. I felt as though I was finally making a difference as I entered into the world of diabetes education from the ‘other side’. However, I remained unhappy. Diabetes seemed to have taken over my life, and I felt as though I had lost track of ‘me’.

Time for Change … Brings Realisation

As a lay educator and support group facilitator I had met many people who seemed to be having difficulty coming to terms with the fact that they had diabetes. I could empathise, lend a shoulder to cry on, offer some wise words, but since ‘true acceptance’ comes from within, I couldn’t make it happen in anyone else. As I was trying to explain this to someone I said that it was “just meant to be”… And there lay the answer to my own insecurity: it was just meant to be.

For a long time I had been trying to beat diabetes. Originally, I had mistakenly thought that I was supposed to find happiness and fulfilment in spite of having diabetes. Not so! All I needed to do was to acknowledge that I had diabetes, and to accept life with diabetes. Diabetes is a part of me, and it has shaped my life in many ways. I am all that (Type 1) diabetes is and I really wouldn’t be me if I didn’t have diabetes. Actually, I quite like me, so I guess in some obscure way, I quite like having diabetes too.