I had my first inclination of my future diagnosis when I was 21 in the summer of 2000. I had just finished university had a job interview at a factory, upon arrival, we were sent to do a medical, which involved a “wee in a bottle”. I was then informed that there was sugar in my urine. I was sent home and advised to visit my doctor, which I did the next day. My Doctor instructed me to provide a fasting urine test, which I did, and a few days later the result came back as “all clear, no action required”.
Fast forward a year to winter 2001, I was now working at the accounts department of a local government office. Throughout November, I was experiencing pain and huge swellings in my ankles. It was getting to the point where I was having difficulty walking and in early December, I was admitted to hospital where I was diagnosed with a condition called Sarcoidosis. The Sarcoidosis was treated with steroids but they then had another bombshell for me. Admission testing had revealed that I did have T1D. I remained in hospital for 7 days and I cannot fault the care I received. I had long discussions with a diabetic consultant and a dietician. The information was thorough, but, in truth, overwhelming. I have to admit, my head was completely fried when I left hospital and frankly, I was winging it. I was initially placed on a fixed dose, mixed insulin where I had to carefully monitor food intake, it was very inflexible. Despite my initial motivation, I never felt successful on this.
The week after release from hospital was the week before Christmas. I had to go out to buy presents and I had my first hypo. I can’t remember the number, but I can remember feeling like rubbish, over eating – a vanilla slice and a glass of full sugar coke – in a cafe. The Christmas food shop had already been done also so the house was full of selection boxes, Roses, Quality Streets and shortbread biscuits. It did not make for a good combination. This was a bad start and a sign of things to come……
Fast forward to the following September, I had made a big decision on my career. I went back to university to retrain as a secondary school teacher of maths. I completed my Post Graduate Certificate of Education and I secured a job at a local high school.
I honestly cannot remember how long I was on a mix. I don’t think it was long before I got moved up to the next level of diabetic treatment: separate long and short acting insulins. This combo should have allowed me more flexibility, but despite my best compliance and efforts, I honestly did not have a clue what I was doing or why I was doing it. My blood glucose would be high and I would over dose the hyper and end up low, then I would over eat the hypo and go high again. As an intelligent man, that I think I am, I was looking for patterns and perfection, but never found any.
The result was that I was always scared of having a hypo at school, in the classroom, so I used to skip or minimise daytime insulin, because whenever I did do insulin, I often had hypos in front of classes and I hated it! I would try more in the evening, but the sheer unpredictability I had, often led me to just give up then too.
I can’t remember what my Hba1c was at this time, but it wouldn’t have been good. Consequently, I started to miss appointments and fall off the radar of the NHS, out of ambivalence, laziness and shame.
I firmly believe that I was in a permanent state of ketosis and I would just do enough to stave off serious trouble.
I had made a stupid mindset decision. It wasn’t like I sat down and thought,
“Right, this is what I’m going to do, I’m going to run hyper”.
It just crept up on me over a long period of time. The fact is that hypos made me vulnerable to short term, immediate consequences, hypers much less so. Yes, I felt like garbage, tired, inefficient every day, all day, but I could still get on with life, to an extent. My experience was that my body got used to it. My reason for this belief is the fact that, despite my worst efforts, my entire diabetic journey has resulted in one hospitalisation for diabetic ketoacidosis. I personally find this unbelievable, as will you, when you read on.
The consequences of hypers are the long-term complications rather than immediate risk. Subconsciously, I accepted this as the lesser of two evils. It felt safe! My subconscious mindset was:
I am still young, I’ll deal with this later. I know about complications, but they are years, decades in the future and I’ll be sorted by then, or I might get lucky…. Because they don’t happen to everyone, probably just “could happens” , “might happens” and “possible consequences”