“At least you've not got cancer”, a few people said to me after word of my diagnosis had got around. Or the more drastic: “It could be worse, you could be dead”.
On a bad day, I’d argue that these statements themselves disallowed me any level of suffering at all, implying I should just wheesht and get on with it. On a good day, I learned to just nod and “Yes, that is true”. Which it was, don’t get me wrong. Of course I preferred the alternative to death.
But in the months following my diagnosis, I’d be shouting (inside to myself): “Aye, I know I’m not dead. But this daily, 24-hour a day management of blood glucose levels, insulin needs, taking activity, hormones, and a bunch of other variables into account, keeps me treading a fine line between life and death. And you know I have to do it for, like, the rest of my life
“And it’s all being done by medically untrained, biologically naïve me. One wrong injection, one slip up, one moment of not thinking straight and I could put myself in a coma, or at worst kill myself. So yes, I’m not technically dead, or dying, more just working daily to keep myself alive.”
It seemed like a lifetime sentence, trapped inside my own defective body, which seemed intent on killing parts of itself on a bi-annual basis, having already worked through my thyroid and skin.
And it’s not just the keeping yourself alive element. I learned that if I didn’t manage my Type One and keep my blood glucose within the optimum scale, I could end up blind, with foot damage (at worse amputation), nerve damage, heart and blood vessel disease. Well, at least I’d not be dead, eh.
During those early rollercoaster days, where hypos were sometimes a twice-daily occurrence and I felt very lightly pencilled into life, when people said “at least you’re not dead”, on the very bad days, if I’m honest (very honest), sometimes ,for a fleeting moment, I wished I was. Just for the sheer fact of not having it, not having to deal with it, or think about it. Not the actual dead bit, not really. I just wanted to hide from my diagnosis. I think that stage is called Denial.
It took me a long time to realise that these were indeed stages, my grief and mourning for my life as it was, for the need to reinvent my mind and body. I am grateful for having a very patient diabetes specialist nurse and consultant and for being able to have some sessions with an in-hospital diabetes psychologist. Slowly, very slowly, I began to work through those stages of that grief, helping myself in a number of other ways, meditation, yoga, and trying to reduce my work load (which I was regularly unable to do anyway because of continued hypos/hypers and repeated infections).
I moved onto other stages of grief. Boy, I paid for the stage of Anger with one particular blow-out, the resulting hangover/hypo the next day leaving me only able to eat jelly babies and Milky Bar. I wouldn’t recommend it as a coping mechanism.
It took me a long time though to realise that diabetes is a mental battle, as much as it is a physical challenge. For your body, you must learn how the insulin works, its impact on your body, how long it lasts, what food does, what foods you need to account for – some of which is mentioned in this post But for your mind it’s whole other challenge.
It’s coming to terms with the life-changer in the first instances and then learning to cope with the relentlessness of the condition, the constant monitoring, the adjustments, taking every aspect of life into account at every injection.
For me as well, it was learning that no matter how many notes I took, learning, reading, devouring information, or trying to ‘fix’ or ‘perfect’ my diabetes (remember, the perfectionist in me) that I had, and would always have Type 1 Diabetes, with all its imperfections and randomness. Forever and ever; end of. I think that stage is called Acceptance.
So even though the hypos and hypers didn’t stop (last post) and I continued to have repeated infections causing blood spikes, there were still changes to insulin regime and I was still as confused as ever, once I had accepted that my life was never to be the same again, a change shifted in me. I accepted the imperfections as part of my life now, a new ebb and flow and I stopped trying to control things, living more in the moment. In some respects I think it made me a better person.
Luckily I managed to get to the stage of Acceptance just in time.
It would have been such a shame to have attended my diabetes education course (DAFNE) in a stage of Denial, resolute that none of what I was about to learn applied to me, that I was normal. Instead, I rocked up to the hospital one sunny day in August, ten months into my diabetes journey, feeling up for learning about my new normal.