Type 1 Diabetes and me. The story of a Diabetic life – Diagnosis #DOC #gbdoc

Type 1 Diabetes and me. The story of a Diabetic life – Diagnosis #DOC #gbdoc
Type 1 Diabetes and me. The story of a Diabetic life – Diagnosis #DOC #gbdoc

As the “About me” section on this website states, I’ve been a T1D for more than 27 years. I’ve rarely, if ever, really spoken about T1D in my life and how it has affected me. Well this is the story, and it’s probably going to be quite a long one, so I’m splitting it up into a number of posts! We’ll start where T1D and I jumped on the bus we’d be on together for the rest of our natural lives.

So let’s jump in the time machine and take a trip back to November 1988, a time when there were only four terrestrial channels, the internet was a network used only by government and research agencies and Margaret Thatcher was still the incumbent at Number 10. And I was thirteen.

I’d had a year or so, following a bout of really bad flu that had taken me off school for two weeks, where I had progressively become more and more thirsty and needed to go the loo more and more frequently. On any shopping trip to the local town, I knew where all the toilets were and where all the taps that I could drink water from were. I’d get the car stopped at any opportunity to go and pee on any long trips and I’d probably use the loo every thirty-fifty minutes by the end. I couldn’t get through a night without needing the toilet and frequently I’d not make it through the night, to the extent that I was using nappies. This was, suffice to say, a little embarrassing. There were other signs. I’d always been tall and skinny, and yet I was now a proper bean pole. I just didn’t gain weight and as an active and rambunctious child, even I noticed that I was no longer able to keep up with my peers as they ran around everywhere.

It came to a head when I went, with my family, to my uncle’s wedding and was picky and emotional and just didn’t want to eat any of the food on offer. I’d always eaten Ice Cream, and yet here I was not eating any of it.

One day soon after this, my father visited the GP for something that was up with him, and for some reason, conversation landed on me. Suspicious of what might be going on, and as my father was a former Pharmacist, the GP gave him some BM urine testing strips and when I got home from school, I was told that I needed to use them. My sister had watched an episode of “Bodymatters” where they had talked about Diabetes a couple of months previously, and suggested that was what was wrong with me, bu it had been dismissed. But there it was, inarguably. When I used the strip, it turned black, which I seem to recall meant that my levels were more than 44 mmol/l. In anyone’s terms, I should have been unconscious and out with DKA, and yet somehow I’d kept going. And that’s when the tears came. I don’t recall precisely why, but as a thirteen year old boy, I’d suddenly realised that life had just changed immeasurably, and that I was never going to be able to eat chocolate again.

The next morning, I went in to school as normal, and my father called the GP. I was summoned to the reception in the early afternoon, and told that due to the result, they couldn’t wait. The GP had called the Diabetes unit at Pilgrim Hospital in Boston, and I was whisked off there and admitted as an inpatient, with Dr Olczak as the consultant under whom I would be cared for. I don’t remember a vast amount about this. The key facts I remember are:

  • Getting bored and doing a lot of wandering around – the Diabetic ward was mostly full of elderly people who wanted to watch things on telly that I wasn’t interested in. As a result, I missed a check-up because Dr Olczak was late and I had gone to the hospital shop.
  • My first injection, with a syringe. I was started on Protaphane (which was renamed Insulatard in the mid-nineties and had green labels), an NPH Isophane insulin, twice daily. If I remember correctly, I was put on something like 18u and 12u as my two daily amounts.
  • The nurse came in with an orange and showed my how to shoot up, then suggested I try it on the orange. Being a little precocious, I decided that it was stupid to use the orange and went straight into my thigh. At least the syringes were disposable. And it didn’t hurt.
  • The ward registrar. Why do I remember him? He was also a T1D, or had IDDM (Insulin Dependent Diabetes Mellitus) as it was known back than. And he used this great device called a NovoPen! I wanted one. Then, as now, I was a bit of a tech nerd and for injections, this looked like a great way of doing it. How cool was that? He was one of the few doctors whose handwriting you could read!
  • It would only be about ten years before a cure would be found. I truly believe that everyone was told this, just to give them some hope. 
  • The warnings about going blind, losing limbs and general nastiness of complications. It wasn’t like I was shown people in this state, but I saw a few on the ward I was in. 
My parents and I were introduced to Carb counting, exchanges, the book countdown published by what was then the British Diabetic Association (BDA) and the amount of carbs I needed per meal. Due to my dramatic lack of weight gain and malnutrition caused by DKA, I was bulking up and distinctly remember a regime of eating 7 exchanges with each meal, plus 1 to 1.5 exchange snacks mid-morning and mid-afternoon, with a 3 exchange snack before bed.
Whilst I didn’t know it at the time, this was all to feed the Isophane insulin and ensure that I didn’t have terrible hypos. I was also instructed what to do with hypos, and used to carry around Dextrosols. 
I also recall the introduction to blood testing. These were Boehringer Mannheim test strips and were visual, There was a brick of a testing machine as well, and I wanted one, but they were ridiculously expensive and at the time, not really necessary. 
You couldn’t touch the pad on to which the drop of blood was placed, and the process was time consuming. Place (large) drop of blood, leave for 60 seconds, wipe off, leave for a further 60 seconds, and then compare the colour to the side of the canister. It was like developing a photo. There were two bars and by comparing the two you knew what your level was, similar to the below:
Packed off home with a blood test diary and strips, I was told to test once a day at different times, to get a regular view of how my levels were. Over the course of eight days, I was supposed to test before and after each meal, before bed and during the night. And to a greater extent, certainly in the first couple of years I did. In the early days, I was taken to the Clinic every three months for Hba1C tests and my target was always to be below 7.5%. My memory of those clinic appointments is dulled. It was much the same as now, in that there was an inordinate amount of waiting and I used to find them boring. I think I usually had an Hba1C in range, but I don’t really remember too much of them, and the occasions where I didn’t usually resulted in a telling off from the consultant. 
Having been released from the in-patient status, I was very much back to being a young boy, doing what I was supposed to and getting on with my life. I no longer felt breathless and exhausted in the playground games and life had a normality to it. My poor parents had a much harder time of it, having to make sure that I had the right amount of carbs, checking that I was blood testing, but more or less leaving me to do my insulin. They dutifully joined the BDA and we received Balance magazine once a month. At the time I didn’t consider just how much trouble it must have put them through to have to deal with me and the diabetes and the emotional strain they suffered. I’m very thankful for what they did for me as I was able to do a lot without ever noticing the impact.
A lot of what we were told in those early days has remained with me in terms of amounts of carbs in various foods. Learning it early probably made my life a lot easier. From here on in, my parents and I learned to look after me at home and manage me from there. But that’s a different post and there’s a lot that I didn’t do tremendously well!

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