The kid and I have been enjoying some fierce Scrabble battles. At this stage, I am absolutely owning it, and, as a mother who has always subscribed to the tough love approach to parenting, I’m not going easy on her in any way. Plus, I like winning.

I’ve always loved Scrabble. I love the empty board at the beginning and the possibilities of what is about to be laid down. I love turning over the first seven letters and arranging them on the wooden stand, wondering if there is any chance of finding a word that will use them all up as my first turn. I look ahead and try to strategise so that I manage to get the most double and triple world scores. And I play to win. Did I mention that already?

As the board fills up, and letters form different words, I hope for an open board with lots of options to use the letters already in play. I move the tiles around on the stand trying out different arrangements, searching for uncommon words that the kid may never have come across, (because why not use this is a teaching moment?!).

When our game finished the other night, I looked at the words and smiled at the randomness of it all. How did those words all come together; how was that pattern the end result? It was an exercise in haphazardness and chance and, sometimes, a bit of luck.

Just like my twenty years of diabetes. There is no rhyme or reason to most of it; nothing really happened by design. There was (and continues to be) a lot of trial and error. I stumbled on things and added to what I was doing to see if it made anything better. Sometimes, I jackpotted on the equivalent of a triple word score with a J in play. Other times, I called it a day, throwing everything back into the box and starting again. There were times that I looked at what was in front of me and somehow cobbled together something that seemed to work.

If I were to make a Scrabble board of words relevant to my life with diabetes now it would use different words today than when I was first diagnosed, or after five years of living with diabetes, or ten, or fifteen.

Twenty years ago, the words would have been about uncertainty, following what I was told and naivety. There would have been words reflecting the management tools I was first given, and they would have been very different five years later, when ‘pump’ would have replaced ‘pens’ or ‘injections’. Some cynicism and sass would have started to make its way in. Another five years later it would have all been different again, my bolshy attitudes much clearer and on show. Fifteen years of living with diabetes would have seen more technology, words showing how my world had been opened up thanks to online diabetes support networks and more travelling. These days, there would be words like ‘Loop’. And ‘tribe’ to acknowledge those friends with diabetes who have come to be an integral part my story.

There would be words that may be denied in regular Scrabble, but the diabetes version would absolutely approve of words and abbreviations such as DIYAPS, diaversary, Kellion, RileyLink and YDMV.

But undoubtedly, throughout it all, there would be some words that would be played all the time in each game. Words such as fear, anxiety, frustration. And hope. Hope would always be on the board, the first word played at every opportunity. Because it’s always been with me. It’s the thread that has been woven through and held together every part of my diabetes, from that first day to today and every single day in between.