I’ve written a lot about George’s diagnosis. But have not been overly expansive on what his daily routine is like. You can see from the pictures above that he has just had a truly wonderful holiday. A week in Cornwall, surfing, fishing, running, playing every sport under the sun and being with his cousins. George heaven. It was close to perfect. Except Type 1 diabetes. That was savage.
The important bit…
Your blood sugar will be between 3.9 and 7.0 – That’s what we’re trying to achieve with George with his insulin settings and doses. His CGM alarms when he goes above 9.0 -dangerously high and left too long his blood turns to acid as diagnosis.
Below 3.9 – low. A ‘hypo’ – too low and he can slip into a coma. Alarm sounds at 4.6 (we need warning)
Both low and high can be fatal. BOTH have serious consequences for long term health- loss of eyesight, loss of limbs, organ failure etc
George needs insulin 24 hours a day. But he can have his insulin pump removed for ninety minutes or so. He can be ‘unclipped’ from his cannula in his bottom to go and jump in the sea or go dune surfing. And not having insulin for these periods works well. The extreme exercise causes his blood sugars to dip sharply and we want to keep him safe. The unfortunate news is that when he is in water his continuous blood glucose monitor stops working when he’s in the water, or further than six metres from us. We can give him a blood test so we know his levels. But it’s very hard to give someone a blood test when they’re in the sea! So we test him before he goes in, we give him some sugar/glucose and in he goes.
The trouble with George is that he’s growing. Every day he is becoming more capable. Every day he exerts himself more. We can’t know exactly how much he is going to exercise, he’s a child. In my training for the 100km I can tell you almost to the nearest 100 calories how much energy I will burn, even over a five hour run. But I know my limits and capabilities and they aren’t changing much. I know what to eat and when. And, most importantly, I know when to stop.
George went swimming in an indoor pool on holiday. Both Tracy and I were with him. He’s now able to swim underwater and loves doing it. But I’ve realised that his blood sugars dip very sharply when he does this a lot. It makes me nervous. We take his test kit pool side, and watch him carefully. His pupils shrink when he is going particularly low and the blue in his eyes seems to fade a little.
I’m really pleased with how the swim goes. I gave him a little sugar before he went in the pool and he comes out at a really good number. Now the tricky part is that his blood sugar really climbs after the swim. This is because he has missed out on insulin while his pump has been off. So I give him some extra insulin and we go and get showered for lunch. Now, I know that he will dip again in the night. Oddly, for reasons I will never know, he falls very quickly the night he has been swimming.
We get out of the shower and he has climbed way too high. I need to get him down before he eats any food. I give him more insulin and we slowly make our way to lunch. Thirty minutes later and he’s still high… I can’t work this out. I check the line for bubbles. Give him some more insulin. I’ll need to wait another thirty minutes to see if the extra insulin has worked but all of the family are sitting down and getting ready to eat. It always feels so cruel to make him wait when he’s starving hungry and everyone else is eating. Tracy decides to test him early, just in case it’s work quicker than we thought. George is very, very dangerously low. Only 2.0.
This number panics me. Firstly, because I didn’t spot any signs that he was low. Secondly – the sensor is way out. This can happen, it needs calibrating every twelve hours with the input of a blood test but sometimes it just stops working. I’m also panicked by how much insulin I’ve given him. He has gone from 12.2 to 2 in ten minutes. This means he could keep hurtling down. 2.0 is enough for many diabetics to lose consciousness. I’ve had to revive George in the night when he was 1.7 – slapping his face gently and blowing on him until I got some glucose in his mouth.
I check the kit bag – George is out of Glucojuice. This is exactly what it sounds like – liquid glucose – and is easily the best and quickest way to treat a big hypo. We have sweets that will amount to the same but won’t work as quick. My family see the panic on my face as I sprint out of the restaurant. I run through the glass doors and slip over on the gravel outside. I keep sprinting until I get to the apartment 200 metres away. All the time, all I can think is that I have just put my son’s life in danger. What if he keeps going down? What if I don’t get back in time?
I run back and George is still sat, perfectly calmly waiting for his food. My heart is going at 200mph. I stare into his eyes. Test him again. 2.0… despite the treatment he’s gone down further. I look to Tracy in panic. We give him half the glucojuice and I know he’s safe now. We have the medicine. We watch him and test again. He’s going to be alright.
I walk away from the table as I can feel myself being overwhelmed. I’ve been overtraining a bit- a 45k run two days ago and an hour of HIIT in the morning. And last night his sensor stopped working. Tracy and I were up every 45mins testing him. The adrenaline and fear grab me from my toes to my throat and I can feel that I’m going to cry. The restaurant is full of my family, my brothers and my sister, their other halves, the children, my mum and dad. So I turn away and try and hide a bit but my sister and my Dad see me cry.
I don’t want anyone to see this part. I’m alright. I know I am. But sometimes it gets a bit too much. I promised George he would never be in danger again six years ago. And in these few minutes I jeapordised his life. We got there in time. But I am just left with ‘What if?’ ‘What if?’ ‘What if?’ And the answer to each one of those hypothetical questions makes me want to vomit thousands of tears. But he’s alright. I’m alright. My sister gives me a cuddle and my brother marches over to me and orders me not to run the next day. He says that he’s taking George and his kit for a while this afternoon – my Mum is to stay with them as she knows what to do and I am to sleep. I try and protest and he doesn’t back down. The fact that I can see the fear in his face when I hand over George’s kit makes his gesture all the more moving. I go to bed. Tracy comes with me. I sleep for all of half an hour and could cry again as I can see my brother checking George’s receiver every five seconds as they play on the grass by the apartment. Tracy is asleep for almost three hours. Did I mention Tracy? She’s slept barely 8 hours in three nights since we’ve been on ‘holiday’. She remained calm throughout the swimming episode. At least on the outside. Inside I know its battering her.
It’s two days later and George is having the time of his life on the beach. He’s in an enormous lake formed by the sea on the beach on a boogie board. His number has been between 5 and 6 for nearly two hours – no insulin required as he’s exercising such a terrifying amount. I wade out into the water to give him a blood test. And the happy numbers are continuing. Leave him without a pump for half an hour til lunch. The bad news is that his sensor has stopped working again. Happens all the time he’s in water but this time, even when we take him out of the lake, it doesn’t return to action. No problem, we’ll blood test him every half an hour. Only now, for the first time in six years, his blood test meter has broken too.
Straight away I feel the nausea of panic. And all of the sun tan disappears from Tracy’s face in a flash. We try and try to get the meter working but without luck. George has done another half an hour of extreme exercise, we have no way of knowing what number he is. I think the right thing is to give him a little food to make sure he’s running high enough to be safe. Tracy is all over the internet trying to get suggestions from support groups. I tell her we should drive to hospital in Newquay, the nearest town to get a kit. Tracy takes George up to the apartment. He’s in floods of tears as he leaves all his cousins who continue to have the time of their lives. They rush up to the apartment. And the next hour feels like ten years.
My sister drives Trace and George in the car. And as soon as they get in George starts to close his eyes. He’s probably just tired, he has been running around like a loony for four days but ‘What if?’ ‘What if?’ ‘What if?’ Tracy shakes him a little, tries to keep him awake. They rush into a pharmacy and buy a new kit for £90
I am on the beach staring up at the path – no phone reception – no way of knowing and all the time I am asking ‘what if?’ I think I’m doing a great job of looking calm until my sister in law comes over to me and puts her hands on my shoulders. The call comes in the end, turns out one phone among 20 works and George is fine. A little high but with a handsome new test kit. I breathe. And realise that every muscle in my body had been tensed for ninety minutes. It’s the end of the day now. The fun is coming to an end as he finally returns to the beach to an eruption of cheers from his cousins. He looks crestfallen that they’re all leaving. ‘What do you want to do? Where do you want to go?’ ‘Fishing? Swimming?’ I’ll stay until midnight to make it up to him. He’s not quite forgiven me for not allowing him to sleep over with his cousins – the trouble is that Mum/Daddy would have to go for the sleepover too which rather kills the fun. The injustice of this condition makes me rage sometimes. Why him?
I thought I’d tell you about these two incidents on holiday to give you an illustration of what it’s like. Out of seven nights on holiday, Tracy and I were up, on average, ten times a night. He had one failed test kit, three failed sets and a sensor which regularly vanished on us. I think it’s cos he’s growing and exercising more than ever before. His juvenile arthritis has been defeated by a steroid injection this past year and his capabilities have soared. He has attacked every day with such vigor. He’s had the time of his life. The holiday has been incredible. Tracy and I have stood back and marveled at his fearlessness. We’ve drowned ourselves in his joy. I cried. Tracy cried. It has been a wonderful holiday. Now time to go home to sleep.
If you want to do something about this how about joining in? Our mission is to raise £100,000 by George’s next birthday (March 24th 2018) All corporations have something called CRS. You are entitled to decide which charity your companies CRS money goes to. It’s your right as an employee to ask for a meeting and tell your company you want to support George. Any money raised will go towards ending Type 1 diabetes. A cure is very close but money is required to fund research. By giving to this cause you will be part of a health legacy. See more at www.georgesrunfortype1.com