Operation Relentless (not talking about CASD)

Definition of relentless = ‘showing or promising no abatement of severity, intensity, strength, or pace’ (Merriam-Webster).

I was going to write my next post about our recent trip back to the UK for T’s review. However, that can wait. I wanted to write about the relentless nature of diabetes. As mentioned previously, it is a 24/7 job and when you think that you are getting on top of things and that things are going well, it likes to kick you back down again.

After T’s diagnosis I did a walking event for Diabetes UK (I signed up for it in the middle of the night during his first night in hospital) and the tagline was ‘Diabetes is Relentless. So are we.’ At the time, I didn’t comprehend just what it meant.

During our recent trip to Birmingham to see the specialist team lots of things happened and overall it was really positive. I will discuss it further in another post but essentially, since changes to his insulin to carb ratio (the amount of insulin he gets per gram of carbohydrate) had been made, we actually felt like his ‘time in range’ had improved. This was despite being away from home and out of routine.

I’m not saying that control was perfect but it was certainly better.

We arrived back home last night and it was so nice to see sunshine today. For context, we only had one day of sunshine during our trip over to the UK.

So, after a planned insulin pump change this morning, off to the beach we went. We were meeting up with some other families and ended up playing cricket in the sunshine, a version of cricket at least. Levels were looking good, trickling down slowly over the morning. Too good to be true.

After lunch at home, levels just kept rising. This isn’t abnormal – in the afternoon levels do tend to rise – but something didn’t feel right. We had to question whether the pump was working. So, a check of glucose levels and ketones = high glucose levels and for the first time, ketone levels of >0.6. Ketone levels of 1.1…. we hadn’t been here before.

We did however know where to start… a call to the nursing team on the 24/7 line at the Children’s Hospital. Essentially, a change of insulin pump was required (this is the third time in 2 weeks that we have had to change the pump early because it wasn’t working) and hope that after an hour ketone levels came down enough. If they hadn’t we had been told that we needed to give an injection of insulin by an insulin pen. It had been a while since we had to do one.

All’s well that ends well but it was just one of the curveballs thrown at us of late. A trip to the supermarket to buy pizza and chocolate helped…

What doesn’t kill you makes you stronger, true, but it can also knock you down a peg or two.

So, whilst families navigating this journey often look like they have it all together, it might just be the opposite. I’m not saying that it is true for everyone but I regularly feel like a swan.

L x