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.
What have I learnt after our second weekend away since T was diagnosed with Type 1 Diabetes?
Preparation is key and expect the unexpected.
Diabetes Kit…
Let’s start with what we packed for our 2 night trip (just for diabetes):
Glucose and ketone monitor
2 x spare insulin pumps
1 x spare Continuous Glucose Monitor (CGM)
2 x Fast-acting insulin and pen
1 x Slow-acting insulin and pen
Glucagon pen and gel
Chargers for omnipod reader and iphone (CGM reader)
Spare dextrose
Adhesive remover
Hand sanitiser
You may think that this is a bit excessive for 2 nights away, let me assure you that it wasn’t and for once, I am very pleased that we were so well prepared.
Rome
We are lucky to only live an hour away from Rome (by train) and as we have been living in Italy for 6 months now, we decided to give a weekend trip a go.
We were aware that the trip probably wouldn’t be without it’s stresses, but it was probably a bit more eventful that we expected.
Before heading to the train station, we had a quick snack and pump change stop, we were excited and ready to go.
Omnipod 5 insulin pumps last 72 hours, so it should last the weekend. Great timing, or so we thought.
As you may be aware, Italy seems to be the carb capital of the world. Don’t get me wrong, I love carbs and to me a meal without carbs, is not a meal. However, guessing the amount of carbs in a bowl of pasta or a massive pizza is just hard. That’s even with the carbs and cals app (which is a life saver).
We made it to Rome, checked in and went in search of food. As previously mentioned, eating out isn’t something that we do often anymore but we wanted to embrace the food culture this weekend and try and just go with it. First meal out for T = spaghetti with pomodoro. Yummy, he was super excited. Looked great and he wolfed it down, we actually thought that we did quite a good job with guessing the carbs, or not…..
Screenshot of the CGM readings for that night
As you can see above, glucose levels were high for such a loooong time. Let me explain for those not used to looking at a Dexcom reading. We aim for levels between 4-10 mmol/L, the numbers that we talk about when discussing ‘time in range’.
Anything above 14 mmol/L (the yellow section) really is high and is when you have to start worrying about whether ketones are building up. T was up there for over 3 hours, the longest it has ever been that high.
Initially, we thought that maybe we had just underestimated the carb content of that pasta.
When it hit 14mmol/L we gave the first correction (extra insulin) and glucose levels just kept going up…. what was going on?!?
After 90 minutes, it was time to check blood glucose levels and for ketones. I’m not sure if you have ever had to wake a child up in the night but the guilt of having to do it to then stab their finger with a lancet is real. When they are crying half-asleep and angry at you. Luckily, T never seems to remember in the morning. Ketone levels were OK, so another insulin correction was given. Eventually after another couple of hours it started to come down but what was going on?!?! We couldn’t have gotten it that wrong, could we?
Saturday morning (minus the hypo – the insulin must have kicked in at some point) started OK. Off to breakfast we went, things were looking good until 11am. Even had the audacity to think that we had cracked carb counting for that meal…. how wrong we were!
We made it to the colosseum, had a snack (which we knew the carb content of) and the glucose levels starting to creep up again….. Out of the rest of the day, he only had glucose levels under 10mmol/L for only 20 minutes. Eeek. There goes our 77% time in range. What was going on? We had promised gelato, did he get gelato, no he didn’t. Did that make us feel awful? Yes, it did.
We walked for miles…. Instead of using the hop-on, hop-off bus that we had paid for, we walked everywhere, in the rain. Walking is usually good for T at reducing glucose levels. We had been told that a 20 min walk can reduce levels by 2 mmol/L. Did they budge, not at all. What were we doing wrong???
Eventually, we gave up and went back to the hotel. It had been hours and nothing was happening. It was time to consider changing the insulin pump. Hindsight is a wonderful thing and now as I write this I wonder why we didn’t change it earlier. We had never encountered this problem though. The pump obviously hadn’t been working.
A panicked call to the diabetes nurses in the UK for reassurance, we had done the right thing and had to wait for the new insulin pump to do it’s job.
It’s safe to say that we couldn’t face eating out again. Off to the supermarket to buy some bits to make a cheese sandwich (T wasn’t happy) and some cucumber (carb counting not needed). He eventually ate 2 hours later when levels were below 10mmol/L. Needless to say, we ended up falling asleep not long after T without any dinner.
It had been a strange old day, on one hand we had seen some amazing sights, how lucky are we, but the underlying stress of things not going our way despite doing everything ‘right’ was epic.
Sunday was a new day…
Played breakfast as safe as we could so that T could get that gelato…. He had it, and enjoyed it. Yippee, mission complete. Despite over estimating carb content, up the glucose levels went. Oh boy…
Skip to 4 hours later and after a lot of walking we finally managed a late lunch in Rome train station. There was a Wagamamas!! That cheered him up and even better, they have their meals on the ‘Carbs and Cals’ app. Levels were looking good. Ironic isn’t it, levels start to look good when you are heading home.
I don’t mean to make it sound quite so negative, we did have a great time in Rome and can’t wait to go back. I struggle with the guilt of having to say ‘no’ to things, especially food. Gone are the days of nipping into a cafe/restaurant for an early lunch when it is tipping it down, instead we carry on with that walk. Food is everywhere is Rome and I can’t imagine how that must feel to a 5 year old diabetic…. Comments like ‘I wish I didn’t have diabetes so I could eat what I want’ gives me some idea though.
I will never stop being proud of how T is managing overall.
On a side note, Italian trains are great! They run on time and you get a seat. Completely different to the UK….
Take away message
Be prepared for anything!
Take that spare insulin pump (and another for luck in case it doesn’t prime). We weren’t expecting to have to change it after 24 hours be there we were.
Phone numbers – take them for your diabetes team for questions/support. We are so fortunate to be under the care of Birmingham Children’s Hospital and they have a 24/7 number.
Carry spare insulin, both fast and slow-acting, you never know when you might need them. I once dropped a vial on the hard floor getting it out to read the name to the GP and it cracked. In the heat of the moment, slips and accidents happen.
Take lots of ketone and glucose testing strips. We went through 6 ketone strips in 2 days….
Most importantly, enjoy the experience (as much as you can).
If you are currently living with diabetes or supporting someone with the condition, you will be aware of the many numbers:
Blood glucose levels
HbA1c (average glucose levels over the past 3 months)
Time in range
Carbohydrate counting (how many carbs are in a food/meal)
Insulin units
Correction doses
In a professional capacity I was of course aware of blood glucose levels and HbA1c but I learnt about the others pretty quickly.
New technology that has been developed to support and manage Type 1 Diabetes such as continuous glucose monitors (CGM) and insulin pumps are life changing but they also mean that you are constantly surrounded by numbers, alarms, screens and target ranges. It can be overwhelming.
Whilst numbers are both important and essential, over the past 5 months we have started to learn that they are not everything. Numbers do not tell the whole story…
What the deleted photo section of my phone looked like from the early days
In the early days, we put so much pressure on ourselves to get it right all the time; thriving to hit the targets, avoid the hypo’s (low blood glucose levels) and hyper’s (high blood glucose levels). However, it wasn’t sustainable.
If I am being honest, I think that I felt the pressure more as a healthcare professional (currently on a career break). Quite a few people commented about how lucky T was to have a Dietitian as a mother. Full disclaimer, since qualifying as a dietitian I have done little in the world of diabetes other than supporting patients that may also have diabetes. If a patient with Type 1 Diabetes required input, they would always be signposted back to their specialist team. I specialise in oncology which is very different. Therefore, whilst people assumed that I knew a lot, all I needed was to be treated like a mother with no clue and limited knowledge.
What the numbers don’t show
The constant decisions – it is estimated that an extra 180 decisions a day are made for a Type 1 Diabetic (Stanford Medicine, 2014).
Insulin timing
Whether running about in play park is OK and not going to send levels plummeting
Whether letting T have the birthday cake at the party is OK, never mind having to guess what the carb content of the cake is…. (still yet to get this one right)
The hypo’s avoided – the time in range may look good but it doesn’t show that having that having the target set to 6.1 mmol/L will sometimes cause the pump to over shoot, meaning that we need to step in and give dextrose tablets to prevent that hypo.
The interrupted sleep – waking up to the CGM alarm going off alerting you to a hypo and then having to wake your child up at 3am to give them dextrose tablets half asleep. I wake up most nights at least once a night to check what his levels are.
The constant maths – carb counting 5 times a day (T likes to eat). Eating out has become a source of stress, and trips to cafes and restaurants are no longer a thing. I’m not looking for sympathy as we are fortunate to be able to afford to eat out, but when you have to wait for the food to arrive to be able to guess the carb content before asking your child to look at it for 10 minutes whilst they wait to eat, it is just stressful and not really fair. The Italians also don’t do kids’ portions, and on one occasion, the bowl of pasta was never-ending and bigger than we originally thought. Cue meltdown in the restaurant as we were trying to get T to stop eating, as we hadn’t given enough insulin.
The finger pricks – because you don’t trust the CGM reading or it decided to stop working. Some days we do none and some days you run out of fingers to prick.
Changing insulin pumps and CGMs – this is done every 3 and 10 days respectively and whilst we know that it means he doesn’t have to have 6 injections a day, to a 5 year old it is rubbish.
The stress of waiting to eat – honestly, the frustration at having to wait 10 minutes is probably the biggest source of stress in our house. Before any snack or meal, T always questions how long he will have to wait to eat, even though he knows that it is 10 minutes. We have suggested things to fill the time (colouring/playing a game/watching an episode of a favourite programme) but it is always met with resistance.
Mental load and anxiety
Decisions made (did I do the right thing?)
Alarms going off in the middle of the night. It is a hypo or just a pressure low where he has been lying on his sensor?
When diabetes just doesn’t want to play ball and you have been dealing with a stubborn hyper for 90 mins, give a bit more insulin, do some running around and then suddenly levels start to drop like a stone and you are then worried about a hypo
The fact that you can do exactly the same thing two days in a row and get completely different results. I read somewhere that Type 1 Diabetes is like sitting an exam but by the time you have finished answering the questions, the questions have changed. Sounds about right…
The enforced activity – the 0830 trips to the play park on a Sunday morning as high glucose levels just won’t shift. Sometimes, a walk can be more effective at shifting those stubborn hyper’s
The guilt – when he is crying about how much he hates diabetes or if we have had to say ‘no, you can’t have that snack yet as your levels are too high’ or ‘no, you can’t run off and play yet as you are about to have a hypo’. As parents, I think it is safe to say that that we feel guilt and would do anything to take the hurt away from T.
I haven’t written this post to just complain or to make people feel sorry for us. I am writing it for the people also living the Type 1 Diabetes life to say that we see you and we get it.
For those not directly living it, it’s about raising awareness of Type 1 Diabetes, what it entails and to highlight that the number on the screen is only just the start.
Diabetes is a 24/7 job and a constant worry. We are 5 months into this lifelong journey and only starting to get to grips with things. Despite some days being harder than others, it never ceases to amaze us how resilient a 5 year old can be and at the end of the day, we still love a dance party (sorry to our neighbours for soda pop and zoo, the current favourite songs, for being on repeat).
Beyond The Numbers 