You know how everything has a name nowadays. Like stupid days we can buy cards for…
So Singles Day or National Pizza day (it’s a thing.)
Diabetes has a whole host of names for related conditions that are a spin off from the condition itself…
(I know, like having Type 1 isn’t enough, turns out if has a whole family of conditions that tie into it.)
There are so many.
Currently, in this house, we are suffering from Diabetes Burnout.
My daughter has it, and I have it – and the prolonged guilt that I have for having it is like a weight around my neck.
But I need to say it out loud – I am sick to the back teeth of Diabetes, I just want a week without it, to remember what life was like without this massive fecking cloud shitting all over our life.
I said it. Using words that will displease my mother.
And now, I need to apologise to my thirteen year old daughter for saying it. Because, actually, I don’t have Type 1 – she does.
I don’t live with Type 1 – she does, I am more the irritating neighbourhood watch representative, that frequently pops round to enforce the rules.
It is relentless.
It is a condition that doesn’t have an off day, that follows no rules. That can lull you into a false sense of security by giving you a decent week of blood sugars, then bamn – it hurtles razor blades from the skies at you – for what seems to be no reason at all.
And of course, there are reasons – puberty, periods, growth, boyfriend issues, pizza, a sneaked sweet.
But it isn’t logical, and it can take weeks to figure out what has gone wrong, and then you may have a whole new host of problems to contend with.
It is infuriating, the condition steals the sleep of the parent, and takes away the carefreeness of childhood for the kid.
It breaks my heart. Because my kid should be relaxing and rebeling through her teenage years, not counting carbs and wondering if she will still have her eyesight when she is fifty.
It exhausts me, I spent Saturday night watching her blood sugars rise and fall like the swell of the ocean when a storm comes in. She was at a sleepover, mortified at 5am when eventually I had to call her to prevent a night time hypo.
What 13 year old wants their mum on the phone at 5am….
What mum wants to call their teenager at 5am?
After six years, and one epically bad month – I am ready to throw the towel in.
Irony being, if I do throw the towel in – all that will happen, is, it will boomarang back into my fist. Because there is no where else for it to go. The only person who can shoulder this burden is her, and christ nows, I am going to do my best to carry as much of it as possible for as long as I humanly can.
The cure for diabetic burnout – well, just like its big brother, no bugger has invented one.
So, it is merely, just a case of suck it up momma.
I feel like laying down in the middle of the world and tantruming. I want to wrench the sugar gremlin out of her blood stream and burn it alive. I want to be able to eat a meal without carb counting, I’d like an evening spent without graphs in front of me looking for trends that I can control. I would love to watch my daughter drink an apple juice without wondering how that sugar rush will impact her kidneys.
I crave normality like a junkie hunkers after a fix.
Then I feel the guilt shaped monster consume me with one bite again, because, as someone who has frequented the children’s ward far too much in one lifetime, I know it could be worse.
But burnout is where we are. She is home from school, as I can’t control her numbers, we are sitting here, not really sure what to do – because we are not doctors.
We have spoken to the doctors – they are not sure what to do either – because it is a condition that makes its own rules, and changes them at will.
We have been here before, and I know I’ll be here again. It’s part of the curse. I am trying everything to alleviate my mood and to look like a good parent. Flipping hard when you are bustling through on 24 nights of broken sleep, and you just want to moan.
Good job I have a blog where I can brush off my soapbox and climb upon it.
The moral – please take a moment to understand the complexities that make up a type 1 world. And if you know a Type 1 or their mother – take them cake – because that helps.
Thanks for listening,
Jane
x
You hit the nail right on the head. My D is T1 & Coeliac. She was diagnosed at 21 months old, now aged 13 years. I’ve been following you for a while now as I don’t have any contact with a pubity aged T1 children’s parents who would understand.
Before I had kids I imagined the mum I’d be. I’d read stories at bedtime. Make them laugh. Hug them. Wipe away the odd tear. Take them for walks. Push them on a swing. That sort of thing.
Then I had my first child, and I didn’t sleep for a full week because she was a heavy sleeper and I had to keep prodding her to make sure she was actually breathing. I was consumed by three things: love, responsibility and fear.
In the meantime I’ve had another three children. Some of them are grown up now and, to be honest, I feel absolutely shattered.
Our issues are completely different to yours: ADHD, autism, gender issues, bullying, depression, asthma. 99% of our friends and family fell by the wayside as my focus just had to be my kids, whose issues were always way more extreme than anything friends and family had experienced. My feelings of love, responsibility and fear grew, as did my feelings of loneliness in coping with it all.
What struck me when I read your post, was the feeling of lack of control you have with what is happening to your daughter. That lack of control gives you a sense of helplessness. You’re forced to live in a response environment, instead of being able to choose to live in a prepared environment. On top of that you constantly watch your little girl suffering. I think that’s the worst thing a parent can go through. That then adds to your feeling of helplessness because you can’t take her suffering away.
My guess is, she sometimes lashes out at you as well, just because of puberty. She probably feels pretty angry at times and definitely confused. Sometimes she’ll seem all grown up and responsible and other times like a small child. She’s probably lost some of the balance you just felt she’d found inside herself.
Maybe it helps you to know that you are giving her so much strength. You are teaching her incredible survival skills that she will need her whole life long. You being constantly by her side will be helping her to deal with all of this.
I’m rather a spontaneous type of person. (I suspect you might be the same?) I had to learn to be prepared (not my natural setting) and then sometimes it didn’t work anyway because life just took its own turns.
I have come to realize that spontaneity is (at least for me) a really good thing. And that I actually need it to keep my mood up. That it makes me a better mother and sharing it with my kids has made them more robust and able to deal with situations they weren’t expecting. Even the autistic one! It also brought more fun into the household – which is especially necessary when times are tough.
Perhaps you and your daughter could also take up an activity together that is very calming and re-balancing like yoga, or mindfulness. Mindfulness sounds a bit funny but it’s actually really easy and can be easily adapted for kids. For example: going for slow nature walks, lying on the grass and closing your eyes identifying different sounds. Nature photography is also very calming. Drumming is also really good – it’s a good way to let anger and frustration out and also to find your inner calm. You don’t need an expensive drum kit, there are sticks you can hit off each other which are pretty cheap or there’s a drum that you can sit on (could double as a stool/table) – I think it’s called a cajon. Or bongos. They are pretty cool.
I know I’m an intermittent reader, but I’ve been returning to your blog for years. That’s not just because I like the way you write, but also because I think that you are an amazing, inspiring person. You’re an incredible mother, with love pouring out of your pores. With you by their side, your children will not only survive, they will fly.