It struck me last week, that as a family, we have lived with Type 1 diabetes for almost half my daughter’s lifetime. Certainly she doesn’t remember a world without daily insulin does, carb counting and being hooked up to at least two medical sensors at any time.
Doesn’t sound like much – but you ask your child when they get home about how they would feel being injected at least every two days if not more and having to do mathematical calculations before a morsel of food passes their lips. Not to mention having to perform more maths’ and scientific calculations around running, exercising, jumping on the trampoline before starting any of those activities.
Bugger it – perhaps don’t ask the kids, think about if you fancy that lifestyle….
I live with it, and although I would trade her places in a heartbeat, I would dread that life.
She doesn’t remember the time before, but I do.
I remember it well.
I remember a time when my first waking thought wasn’t around blood sugars. When the first action I performed in a morning was a trip to the loo, not a check of her blood sugars. I remember being able to look at food and not instantly know the carbohydrate content. Cake lacks its fun when you know one slice is your recommended carb intact for the week.
I can also remember not waking and having that tiny little fear that perhaps last night I missed that hypo that took my daughter.
I know it sounds extreme.
But still, it is my extreme. That one day, despite all our work, all our efforts, that hypo we can’t stop will cause unwritable destruction.
I also worry about them crossing the road, riding their bikes and all the other usual fears we hold in our hearts as parents.
I just didn’t need one more.
This week has been undeniably hard as a Type 1 mum; and I know that means my twelve-year-old little girl must have found it even more trying. She went on a school residential. I wrote the care plan, spoke to members of staff I don’t really know and asked them to implement it. For the first time in my daughter’s diabetic life I entrusted her overnight care to a stranger.
I don’t want to beat the drum about how hard it can be living with Type 1…
Actually scrap that – I do.
Because, whilst we don’t want allowances, as a family we crave more understanding of the condition.
Whilst other kids packed snacks, we wrote a care plan about how sun, walking and rounders would affect blood sugars.
Possibly appropriate to point out at this point, I don’t have any medical training. Six years ago, I left the hospital with enough insulin to overdose anyone in the house, a box of needles, and a pamphlet and from that point out I have calculated how much insulin is needed, hourly, to keep my daughter alive, safe and well.
Needless to say – not every day is a success.
Writing a plan about how to manage diabetes on a school residential pretty much requires a full dissertation to be able to be any real help to someone who doesn’t interact with the condition daily.
Remember those adventure books from when we were kids….. where you could tell the story yourself….
You are in a cave and you see a long passageway to your right with a forboding face etched on it, to your left is a small door you could squeeze through if you try. If you choose the door turn to page 26, if you choose the passageway go to page 14.
That is pretty much how I would like to write a plan for Type 1.
Excitement and heat cause her blood sugars to party and rocket into the teens at times, or on occasion, the heat mixed with anticipation can cause hours of hypos that no sweets seem to impact. If the party happens please turn to page 26, if the zero impact sweets come into action please go to page 14.
The book would end up being longer than Moby Dick.
But we gave it a bash. Basing a plan on how her blood sugars have been for the last couple of weeks. Bearing in mind, she is a child in the delicious phase of puberty, so every day throws out a new diabetic curve ball.
Turns out I may as well written out my shopping list, as diabetes pretty much laughed at my plans and mocked me for even attempted to manage it from afar.
15 of the feckers.
With insulin running at an all time low, and 45 fizzy haribos, one pack of marshmellows and enough apple juice to drown in – whilst everyone else got on with the residential, my kid tried to ensure she didn’t end up in hospital.
Full credit to her – she battled on regardless, and my heart broke a little for her every time she called to ask for a bit of help.
Our last call was at midnight, when other kids were causing chaos for the teachers, and my kid was with the teachers, asking for more sweets to combat the latest hypo.
For the first time, she sounded scared, clearly I have failed a little in not projecting some of my own anxieties.
She was fine, she is always fine. Because, quite frankly, we work too hard at managing this unrelenting, absolute bastard of a medical condition for her to not be fine.
But, fecking hell. It is such hard work.
It isn’t a case of a couple of injections.
It isn’t a case of avoiding sugar.
It isn’t curable.
It does have long lasting health implications if not managed well in childhood through to adult years.
It does kill.
In contrast, most people with Type 1 live full, long and healthy lives.
But like swans gliding across the water, they are pedaling madly below surface trying live and manage a chronic condition underneath.
And they also face the daily misery of knowing how many carbs are in cake. No one should live with that knowledge – it pretty much ruins cake.