Hench-ness

If you haven’t explored the Urban Dictionary, you might want to think about doing so. I say might, because if you do, you also have to be prepared to run across some shall we say colourful definitions. All the words are input and defined over time by readers….so some of them are decidedly wacky, and many of them are not fit for under 16s.

However. Having a 14 year old in the house does mean that these totally unheard of words enter common usage. Hench is one of them, and one of my favourites. For anyone who doesn’t click through to the dictionary, it means large, muscular, fit. As is the way with slang words, it’s also used with this kind of smart boy self consciousness. And it really does make me laugh. As in:

1) from OH: I’m going to go to the gym now, and get hench.

2) from E, while watching the World Cup, about the players in turn: hey Mum, is he hench? Well is he hench? How about him then?

3) from M, about our large fluffy white cat Schubert: he’s not chunky, he’s hench.

4) from E again, two nights ago, on the verge of inserting his first CGM sensor: this is one hench needle.

******

Yes, we have finally but finally ventured into CGM land. And the jury’s out so far. The sensor insertion is, I have to be honest, pretty grim. The needle is VERY hench, and scary for a slim boy with virtually nothing extra on him to fire it into. He really had to screw his courage to the sticking point. Did not want us to do it. And it was quietly a little heart-breaking to witness. Like the sil-sets, the needle goes in at 45 degrees, and like the sil-sets, the insertor sounds like a small firework being set off. Disconcerting if you’re not prepared for it. But by far the hardest thing really is the clunkiness of it all. It’s big on his stomach, with sticky tape over it, and that combined with a pump set… well, we will need to see how this goes. At the moment, it’s feeling invasive, and a little brutal, somehow. Perhaps this will pass.

We long for it to pay off, for his quality of life to be improved. It’s all worth it then, and he’ll learn to do it, exploit it, and live with it.

At the moment though, the readings are still up to 2mmols off and the hypos had in the first 24 hours weren’t picked up in the readings.

I suspect there is considerable skill to this, learning when to calibrate the machine for maximum benefit and accuracy, when not to.

For now, the best we can hope for is that in the next day or two he may be able to have a snack without testing. Or we may be able to get up in the night and look at the graph rather than wake him and poke his finger. This would start to feel like a promising path.

In another five days, there’s the prospect of the next hench needle to contend with. He doesn’t have much room on his stomach for the CGM and the pump, certainly not enough to guarantee good rotation of sites. So he’ll have to circulate the CGM elsewhere, to his leg perhaps. Which will be another leap of faith for him, and more courage. He has terrible memories of painful injecting on his legs.

Sigh. Every change and improvement in control and quality of life is preceded by a period of insecurity and SUCH hard work. And stamina, and courage. And belief. We’re in this together, but it ain’t half hard sometimes. I don’t want this for him. We don’t want this for him. Sometimes it feels like we would trade ANYTHING for him not to have to deal with this, day in and day out, morning noon and night… And when it’s like this, useless anger comes in waves: why, why why?

Sigh again. Just because.

Numerous ranches

Things continue to be hither and thither — hence my struggle to post! Apologies. What always then happens of course is an overwhelming urge to say EVERYTHING.

Not possible. So a quick run through: we think Cleo the cat is with kitten! Her brother is able to tolerate her, phew. We had a party for 30 people last week, and the sun managed to shine throughout! Phew. I’ve taught some year 6 (11 yr old) and today year 5 (10 yr old) school children poetry these last few days too. Really excellent fun. Phew! I delivered a paper to the Poetry and Voice conference at University of Chichester over the weekend. On how different sorts of writing have served different purposes since my son’s diagnosis — and on how the beach hut poems came about. Went well I think, and the whole conference was a stimulating one. Phew!

Not so phew: daughter M, six weeks after cracking her cocyxx in a rounders match (seriously painful, missed two days of school), then jammed her ring finger on her, yes, fingering hand…. So has had to re-schedule her violin exam. Oh dear. Very painful, swollen joint. Little delicate hands. Sniff!

Not so phew too: battles with lows. The heat seems to have had the generalised effect of lowering E’s insulin needs, so last week we had several evenings of unfortunately several hours of dragging around in the 3’s and 4’s… Even with the pump on 0%, eg actually off. It was extraordinarily wearing for him, and a I don’t mind admitting that one night it was a little scary: no insulin going in, already treated two hypos, and gee, 15 minutes later he’s still on 2.5mmols... Disconcerting. But we got up I think half a dozen times that night, and by morning he was okay.

Sigh. Then after 3 nights of going high from too low a temp basal (too little insulin) in the day — we think we’ve sort of cracked it. For now! 90% temp basal in the day, plus 90% of the usual carb counting/ratios. Turn off temp in early evening to stabilise for the night. Unless he’s exercised of course…! In which case turn it to 95%.

Assuming he remembers that he’s exercised.

Assuming that we remember what he’s told us. And that we all don’t crash out on the sofa from SHEER EXHAUSTION while watching the World Cup, where England did SO BADLY. Oh dear.

Did I mention that on the way back from Chichester the car sprung a diesel leak and I ran out of fuel while passing a truck? Scary.

And had to wait on the motorway verge 10 miles from home. Never, ever nice, traffic whipping past at 80mph. I took my linen trousers and sparkly flip flops into the nettles and thorns, up the bank, I can tell you!

And did I mention that because one car is in the shop I did all the driving this morning: child to school, OH to work. And oh, deliver a testing kit to the OTHER child across town, because accidentally forgotten….?!

But we’re here. And we’re okay. As long as we keep our juggling hands free.