Most people assume the worst parts of a T1 diagnosis are the multiple daily injections and finger prick tests. Don’t get me wrong, these are a never ending, relentless necessity post diagnosis, but for me weren’t the most challenging part initially. The main aspect I initially found to be the hardest part of our new terrain were the organisational skills it requires!
When my children were babies, I breast fed them. This wasn’t solely because of the benefits for them and myself. It had much more to do with the fact they would probably have starved if they had had to rely upon their mother being organised enough to sterilise bottles, boil water in advance and ensure there was powdered milk in the cupboard!! I found it suited my organisational powers to ensure only two elements were needed to feed the baby. Namely, the baby and me!
Given these very limited powers of organisation, the irony of being responsible for a baby and now child with T1 is not lost on me. As a child, a close friend of mine was diagnosed with T1 when we were 8. She was an only child and it was this fact that I attributed her attentive mother’s reliable attendance to all our sporting fixtures armed with enough food to feed an entire battalion! It was only when my daughter was diagnosed and this same, glorious, dignified lady wrote to me, a letter that only another mother of a child with T1 could, that the penny finally dropped. Her attentive nature was not due to her having an only child. It was testament to the unfailing vigil she held to ensure her daughter’s health and I am still in awe of how she managed this impossible balancing act without any of us ever realising!
We were released into the world as custodians of this new house guest five whole days after our formal introductions. I had learnt how to mix insulins in the smallest of syringes. I could almost coordinate a blood glucose meter, lancet and baby’s wriggling heel to ascertain just how wildly out of range her blood sugars were running! And for the first time ever, we had, not just enough equipment to fill a medicine cabinet, but a medicine trunk! Prior to diagnosis, the sum total of our offspring’s medicine was a half empty bottle of Calpol that a visiting family had left behind! Looking at the bags and bags of medical paraphernalia that nestled in the boot of the car, I wondered whether I would ever be able to absorb these alien objects into our home and our lives without feeling an irrational, searing resentment towards them. For they were the only tangible aspect of her diagnosis. To the outside world our baby looked, if a little lighter, much the same as she had the previous week. There was no label to inform the rest of the world of the daily battle we would have to wage to keep her alive. We would have to keep our own vigil using these tools to keep her well and safe, and we would do this silently. Without fanfare.
But what we weren’t told was that these supplies would run out. And before this happened, they would need replenishing!! To those of you reading this blog who don’t have T1 or a close connection with it or any other chronic medical condition, you may think “So what?”. And to be fair, I didn’t think this would pose me any problem either. How wrong I was! I had, wrongly, assumed that the drawers contained within every pharmacy were the stuff of magic and would house every item ever written on any prescription! I certainly hadn’t banked on pharmacists returning to me with doctor’s script in hand telling me that the tiny syringes I had used that morning to inject my baby didn’t exist, and that he was sorry, but could he order us some larger ones!! Many 40 mile round trips to the hospital were made in the first couple of months due to the scarcity of those syringes. The hospital pharmacy were seemingly the only outfit to stock these rare syringes, although we seemed to be exhausting their supplies with alarming rapidity. My one biggest regret from those early days was that no one took me to one side and told me of the importance of setting up a regular repeat prescription list with your GP and then taking some time to build a relationship with a local pharmacist. Just these two simple actions would have saved me hours in frustration, tears and mental exhaustion as I tried and failed, to keep a check on the seemingly unending inventory of medical supplies we now needed to keep us as a family of four.
The other part of being organised was the clock watching. By injecting my baby with a mixture of insulins every morning and evening, I felt I was, to all intent and purposes, reloading a volatile compound twice a day. I’m ashamed to say in my eyes she ceased to be a little baby but became a ticking time bomb, containing insulin that would demand to be fed at very precise times of the day. My life became ruled by the clock. Everything stopped at 7am for breakfast. And again at 10am for snack. Once more at 12pm for lunch. 3pm was snack time again. And finally 6pm for dinner. A delay in these times, by even five minutes, would be enough to tip her into a hypo where her blood sugars would start to plummet. I now carried enough food to feed a passing army and their enemies! I lived in fear of being caught out without the means to properly care for her. I no longer used a handbag – I now needed a rucksack wrestled from a soldier of a passing army! In fact, I don’t think any of my handbags since diagnosis could be labelled as ‘minimal’! All bags must now be able to carry a cartridge, cannula, insulin vial, snacks, dextrose tablets, jelly babies and occasionally a set of car keys and a purse!!!
I don’t think I’ve ever completely conquered my organisational issues with T1. But I did conquer how I viewed my baby. The next post will be about how we went from injecting to pumping, and how this led to us meeting our baby girl again………..