With Christmas looming and family gatherings impending, I am gearing myself up on how to respond when asked ‘how is Anna going’? After more than a year, I always struggle to answer this question because even though I know it is meant with genuine interest, it is not as if she is studying for an exam or preparing a speech for school.
In my mind, I want to say ‘oh, you mean how are we all coping with her chronic auto immune condition that if not managed, could result in long term complications or death?’
It is difficult to grasp the enormity of what is involved in managing Type 1 unless you have walked in the shoes of a Type 1 family. You need to be ‘on’ from the moment you wake until the time you fall asleep and even then, you can be woken during any time of the night to deal with whatever T1D has thrown at you.
You need to become a nurse, mathematician, dietitian, teacher and physical education practitioner. Your memory needs to be honed to recall information from the day before and you need to be able to remain calm in a crisis.
Your culinary skills will improve as you search for recipes that will not only contain certain food groups but will also sustain levels over a longer period of time. You will become a mediator when foods that are in the ‘every so often’ group are requested despite you knowing it’s not a great idea.
You are required to be a liaison officer and also diabetes educator when it comes Type 1 management at your child’s school to ensure that insulin procedures are followed and any risks are minimised. The role also includes analytics where you will observe levels increase, decrease and at times maintain a steady course. From here, you will then determine the appropriate course of action.
Managing a Type 1 diagnosis is a 24 hour, 7 day a week job and to manage effectively is tough. Decisions need to be made quickly and at times these decisions are hard. We will have moments to celebrate and moments where we just want to cry. There are times when you feel no one understands and often, that is the case. A Type 1 Diabetes diagnosis can feel as though it is outside our control and to an extent it is. However, I am ever the optimist and there are some elements that we can control.
Sure, we may not be able to control the numbers all the time but we can control how we react to those numbers. We can control what foods we choose to eat and when, the amount of physical activity and the amount of insulin required at any point. We can control how we interact with others and and how we interact with school to get the most effective outcome. We can control how we educate our daughter on T1D and how we as a family choose to manage this together. Lastly, we can control how we don’t let this control our lives. That is a tricky one to get our heads around but it is important.
So you see, we are in control in many ways. Let’s educate ourselves, share stories and listen to those who have the knowledge. We may not be able to change the rules of T1D but we can certainly change how we play the game.