It’s that time of year when the focus is once again on Diabetes. What an opportunity to raise awareness of Type 1 Diabetes and get the word out that this is not an easy condition to live with, nor for the person who has the condition or for their families.
I am always personally astounded by the complete lack of knowledge by the general public. I do try to educate at every opportunity and I find the confusion between type 1 and type 2 to be the first hurdle. Sometimes, I wish they would change the name of type 1 diabetes to differentiate. Autoimmune Diabetes would be a better name I believe. I always start with:
‘It’s an autoimmune disease, the body destroyed its own cells that produce insulin, it was not caused by lifestyle or diet’.
Then followed by looking into the face of a person who still doesn’t know what that all means. It can be tiring and lonely when you open up to the struggles faced, to be met with disbelief.
If I could get everyone to listen, to really listen, I would say this…
Waking my child up in the middle of the night for the umpteenth time, to save their life with glucose, is exhausting. The fight or flight response being triggered multiple times a day to ensure my loved ones safety, takes its toll. No, it REALLY takes its toll.
Trying to figure out how to adjust insulin to minimise lows, but control the highs is an impossible task, and only can I ever make a good guess based on my learning. Even then, the unpredictable absorption and use of insulin by the body, that is affected by exercise; fast carbs; slow crabs; mood; growth hormones and even the weather, makes it highly likely I got it wrong. And, getting it wrong comes with the penalty of endangering my loved ones life. The responsibility is enormous and I carry this weight each day and night, whilst trying to live a positive happy and productive life. Sometimes I hide it well and other times I look frazzled and lost.
So, when you ask with genuine kindness, ‘Are they stable yet?’, I want to cry out and shake you and let you know,
‘No, this is it, they will never be ‘stable’, it will be a battle, day and night, until a cure is found. I too am in disbelief that there is not a better, safer treatment in 2023!’.
I also want you to know that type 1 is like having another job that never stops and you cannot take a day off no matter how tired you are. When you lay down to get the sleep you so desperately need, it isn’t allowed, it isn’t possible. You must get up and attend to the blood sugar as the consequences are too great if you do not. You feel this exhaustion in your bones it is so deep and your brain is foggy from the hundreds of extra decisions being made every single day. Shall I wait to give insulin, should I give less insulin as they are more active today. They are under the weather do they need more or less insulin…they are excited or angry, do they need more. It’s hot, I need to reduce the insulin. They want pizza and that means the food is slow release carbs so the insulin must be delayed. The thinking and guesstimating never stops.
The photo below is of a person demonstrating the extra decisions they made due to type 1 in a single day. It is enlightening to see this as these decisions are hidden inside our brains.
Every meal and snack we have to calculate the carbohydrates in the food so we can correctly dose the insulin. Giving too much is easy to do and a simple error in a calculation can result in a serious low blood sugar, or even be fatal. Just think about that. Every meal, every single day for your life!
The image below has been borrowed from another mother of a type 1 diabetic. It really brings home just how little margin for error there is when dosing insulin.
I personally find it anxiety inducing having this level of responsibility each day for my child. I also find that other people simply cannot comprehend the level of caution required when looking after a child who is dosing themselves. People’s ignorance on why I am checking and supervising my child is a conflict for me. I cannot seem to get across the seriousness of allowing a child to be solely in charge. You wouldn’t give a child a packet of painkillers in their school bag but my child has insulin at hand each day.
The overwhelm does not stop here because there is also the ordering of medical supplies, which there are many. If you are fortunate to have an insulin pump , changing the infusion site every three days. Wearing blood glucose monitors that read blood sugar, so you do not have to draw blood from the fingers. Changing these devices every 10 - 14 days without fail. It is work to keep my child healthy and it requires constant attention and effort. You cannot take your eye off the ball because the ball is their life and there is no dropping it, even whilst you sleep!
If that wasn’t enough there are the many hospital, dental and opticial appointments needed to maintain my child’s health. But all of this is nothing compared to the emotional burden it takes on my child and family. It seeps into every crack of my family, affecting relationships and dynamics. Trying to manage the toll it can take on my child’s mental health and their sibling and of course my own. It is a lot more than simply giving insulin.
The 14th of November is World Diabetes Day, and I will celebrate the discovery of insulin and feel the magnitude of this discovery, knowing full well it saved my child’s life. However, I also look to the future for the next chapter, the next breakthrough that we so desperately need to take away the burden of living with type 1. I really do believe a functional cure is on the horizon and I dream of the day that my child is free from all of this. I pin my hopes on the fantastic work that JDRF do in raising awareness and bringing together people to collaborate, so the elusive cure is finally found. We wait patiently until that day arrives.
