One of the first things my Diabetes Specialist Nurse (DSN) told me was that I needed to learn to be “flexible”. It was the first of our daily consultations and I think I’d asked when I’d be “better”. I like to know what’s happening, to have a plan. I’d have put it in my diary: “Recovered from diabetes.” I’m sure she may have sighed.
I was keen. Just two days earlier, the hospital nurse had shown me my new diabetes ‘regime’. Before letting me home, she’d shown me how to prick my finger to monitor blood sugar and how to inject myself, giving me steady doses of insulin to take – four set injections every day. Ever injected yourself? It’s a whole new skill I can add to my CV now.
She’d also started my diabetes education. Looking back at my notes, I really had no clue: I was rubbish in biology. Some of my notes contain the simplest of concepts, like “food = glucose = energy”.
I had a steep hill to climb.
Now on that first Monday, a dreary November day, my nurse was telling me I may feel better by Christmas but that it could take longer. I explained that life was ruled by the diary not to mention a small child and a business – I needed to be better. I’m a perfectionist. That’s when she mentioned “flexibility”. I winced.
My diabetes education began in earnest that week. Nurse and dietician telling me I could control diabetes and not let it control me, and that in time, I’d learn to know what’s on my plate, and dependant on the food and my current blood sugar level, to work out how much insulin to take. I took notes upon notes.
But it all felt a bit like that cartoon of a woman speaking to her dog. She thinks she’s saying: “Come on Fluffles, let’s go for a nice walkie,” yet all the dog can hear is “XXX***X****, blah, blah”. I felt like the dog.
Cue ‘Google’. Now searching for examples of this supposedly-possible-life-after-diabetes-diagnosis would have been a cunning plan, except I couldn’t see the screen. The high sugars in my bloods had affected the small blood vessels in my eyes, blurring my vision.
To be honest that wasn’t the only problem. I still felt physically awful, very weak and tired. Emotionally I was a mess, tearful and unbalanced. I also felt very out of control. After Friday evening’s discharge, I’d been speaking to the on-call hospital doctor every day so they could tell me what levels of insulin to take, now we were onto daily-calls to the nurse, checking bloods and adjusting insulin. Plus my first ever visit to the dietician left my non-scientific-brain struggling. And the injecting and finger-pricking, well it just felt like an out-of-body experience.
So I tried to find a story to help me understand what was happening to me, what was going on inside my stupid-body and how I could be better. Without the ability to read, I turned to You Tube videos. I challenge you to find adults talking about being diagnosed later in life with Type One diabetes. There’s plenty of chat about children with Type One, or adults who were diagnosed Type One as a child. And there is of course lots about adults with Type 2 diabetes.
But in my search, I stumbled upon two videos that stick with me today. The first was Mike Hoge of Comal Crossfit, whose story of diagnosis made me cry and whose work to ensure his life was his own gave me some hope. Even if I couldn’t really see what he looked like!
The second was from Julie (@imtype1) who had only been diagnosed 3-4 weeks. She spoke honesty about her diagnosis and confusion – and I admired her for it. But it was her video a year on which inspired me most – again, a story of tackling the Diabetes Monster through exercise.
So even in those early days it seemed the only way to get my life back was to focus on food, exercise and healthy living. I just needed to be able to get out of bed first.
But in my ignorance, I failed to realise the complications of the body. Yes, I’d learn to take account of blood glucose levels and my food. But over time I’d come to realise that a massive array of things impact on your levels: food, exercise, alcohol, stress, adrenaline, housework, shopping, looking after Boy Child, being sick, and a biggie, hormones. The list is endless. In fact I now reckon breathing is on that list too.
So the nurse was right, I had to learn to be flexible and less of a perfectionist. And I needed to learn, how all those things would impact on blood glucose levels and therefore my overall quality of life and life expectancy. In time I’d come to learn that I couldn’t find those answers in others but only in myself – there’s no such thing as a typical diabetic. But in those early days with my blurry eyes and equally blurry brain, I just wanted my ordered, stable life back. Ah, you see, once a perfectionist…