I’m just lying in my bed, well sitting up in my bed. Trying to do the million and six things I have to do for work at the mo. I can’t focus. I am needing a vent.
I actually don’t know who to vent to anymore. This shit is not new. It’s not news. It’s ongoing, every day, every night, all day, all night. The same. But different. And frustrating. And painful. And heartbreaking. And relentless. And tiring. And just fucking ARGH.
It’s been now just over 2 and a half years since Beau was diagnosed with T1D. I really REALLY should have this sorted by now. His levels should not be a fucking seesaw, and he should not be high all the time. Followed by lows.
Lately, we have noticed Beau has been sitting quite high in the afternoons and evenings, and we thought maybe we aren’t measuring everything – like sometimes when you’re out and about things get hard to calculate – particularly treats like hot chocolates and ice creams etc.
So we had been blaming ourselves, so in the last week we have been SUUUUUPER good at weighing, calculating and bolusing correctly (SOMETIMES slightly late, as in, when he starts to eat – fussy 4 year olds are so bloody fickle – you never know if he’s going to like it or eat it or what!!!!)
Anywho, it’s still not bloody working.
So. It looks like his ratios might need to be changed again. KW also reckons sometimes it’s like when we bolus or correct (give him insulin for food, or to bring his high down) it’s almost like it just sits there in his bum where the needle is, without going in his bloodstream. So then you give him more and thennnnnn it ALL goes in at once and he goes low. A mind fuck I’m telling ya.
This means Beau’s HbA1c is going to be crap again. FFS. 🤦🏻♀️
I hate myself for it, I really do.
I am so tired. I know I write this often. BUT FUCK ME I AM TIRED.
Something of late interesting to note, is Beau can go completely nuts psycho when he is high, like completely smashing his brother or us, throwing things at us, screaming in a rage. Not cool. It is weird to witness and so hard to know how to handle it. Is it just him? Is it diabetes related? What should we do?
So. That’s something new. Always fun isn’t it.
Might try to chat to the psychologist when we next have clinic in the hospital – whenever that is. Next month I think…
I mean, things haven’t been boring – he broke a wee bone in his foot! So that was shit, but the temporary cast didn’t last long – even though we were super careful and he wasn’t having much pain when the Dr pressed him so he left it off. We got nearly home and Beau goes ‘I was tricking that Dr, sometimes it did hurt when he touched it. 😳’ Luckily he was ok with it off and was able to walk ok, just not run or jump – but to be fair I don’t think it really stopped him. It was just a tiny dent of a break in the bone on the side of his foot under his little toe.
So. Here I am, typing frantically, spilling my shit to who knows who on the internet, rather than talking to anyone in my real life about it cos I feel like I am an annoying, draining broken record.
I utterly love and adore my gorgeous Baby Beau. So much. More than anything and anyone (EQUAL with his Dad and brother) – and the cat and dog too if the kids ask. And I wish more than anything that some really smart scientist(s) finds a cure for this fucking shit arse disease that found it’s way into my son’s body and our lives.
In the middle of the night the other night, I found myself thinking how lucky we were 3 years ago not having a clue about anything at all to do with diabetes. Like no clue. And then I felt guilt for all the people to manage this and help their loved ones manage it and how I hadn’t known anybody or even thought twice about them with empathy and compassion as I had no idea what it entailed.
Last week, Beau said to me in the car ‘I wish I didn’t have diabetes’ I said ‘I know darling, me too.’ And we talked again about how he does have it and he’ll have it for his whole life until he dies, or even when he dies.
We got to the mall and I was taking pics of him with (earlier mentioned ice cream treat) and I found an eyelash in his eye and he blew on it to make a wish ‘I wish I didn’t have diabetes but that I don’t die.’
💔💔💔
Heartbreaking.
He manages so amazingly well though. It must be so frustrating, embarrassing, painful, annoying, horrible, tiring, confusing, worrying and fucking hard for him. You wouldn’t know it most of the time. What a star!!!!!!!!!
Anyways better get back to work. Or to sleep.
Note – I don’t write these so you need to comment to make me feel better, I write them because I need to write them. I need to write and write and write and feel better with blurting all this crap out on my laptop. And it’s really amazing to me if people have read it and it’s helped them in some way. It’s one big crazy world guys – let’s just have kindness and empathy always.
When your cast matches your sensor tape!
Just before the eyelash wish 💙
Asking if Cooper’s rugby is finished yet 😂