Uphill battle

It’s felt a very full few days. Sometimes in families there is a time when it seems things are changing quickly. The children outstrip themselves. The adults make plans. Some kind of change is in the air.

We had another clinic appointment yesterday, and despite the week of highs after our holiday, E’s HbA1c is again very good, the lowest yet, well under 7%. Just how lucky we are in this achievement was brought home to us when we both heard another teen’s HbA1c, same day, same clinic: 12%.

Living with diabetes requires an incredible vigilance, and, as the consultant pointed out yesterday, gaining control requires a kind of obsessive nature, a perfectionist bent. How true for E.

Growing with diabetes, growing up with it, requires quite a different set of coping mechanisms. And some are winners in it, and some have Herculean sized struggles with it. This is the hormone story: insulin (a hormone), brings blood sugar down. Cortisol and adrenaline — both typically sky high in adolescents, and especially in driven adolescents (check) — raise blood sugar. Unpredictably. Of course.

Growth hormone, as I’ve mentioned before, also raises blood sugar. And is only secreted at night. What I did not know is that it is secreted at all different times of night, in response to the body using up the glucose present in the blood. As the blood sugar drops, growth hormone has the chance to kick in. So it is secreted in a pulsating type pattern. Unpredictably. Which is why over the last six months we have had these astonishing runs of highs in the night, and then just when we want to do something about it, boom, they stop. We have been completely unable to predict or grab them.

The consultant’s advice for these adolescent highs was very good: correct the random highs (perhaps caused by cortisol and adrenaline) as you find them. Don’t worry overly about the growth hormone highs in the middle of the night, because some of the effect may well settle and drift off by morning. So try to get the morning reading okay, but stress less about the night time one.

He also confirmed that E had grown over an inch since June, and another inch in the preceding three months. So we all had a bit of a celebration and a sigh: we are in the middle of his main growth spurt, which may  last another year. Hold on for the ride.

It is clear that E and we seem to have the mentality to constantly ‘be after’ diabetes and control without it wrecking our lives. He tests as a matter of course, without protest, and is keen to keep in range if at all possible. His most upset times come when he runs high — not just because he feels bad, but because he is hugely, hugely aware of how bad this is for him.

In that way and so many others, we are lucky. We are able to carry all this, to hold it, without it taking an incapacitating toll on us.

But how easy it is to imagine a family, many families, where people just aren’t put together like us. Their lives are not as settled, not as happy in other ways. They’ve not had the support of a good diabetes team in the early years. The child or teen just wants to pretend it’s not happening. And the numbers spiral up, kept just within the need the hospitalisation.

I’m not saying anything that almost all of you know, and may even be experiencing. It does make me desperate though, desperate for help with this: how can all families be expected to essentially cope on their own? How can every person be expected to understand and be motivated to look after themselves? They can’t and UNDERSTANDABLY SO. It’s dire. But the price is so high.

E was speechless when he realised that the teen across from him had an HbA1c which was almost twice as high as his. I could see a helplessness mounting in him. How does this happen? We both felt chastened, and left feeling quite humbled. And for me, a little heartbroken too.

***

A little kitten vid. Cleo calling and playing with them. After a while she realises one is still in the box. Hmm… goes to check it out, and they all (eventually) follow… Our bundles of good and silly stuff amongst all the sobering thoughts…

Co-existence

I’ve had the odd sense in the last few days that I really shouldn’t do a post about the kittens. There are lots of other things to talk about, and some of the reason I’m here is to talk about them: our experiences with type 1, the way that diabetes is seen and talked about (or not), and our family functioning alongside all of this….

So I’ve decided to DO BOTH. In time-honoured multi-tasking fashion.

First, for days I’ve been haunted by Justin Webb’s article in The Daily Telegraph online. OH sent this to me, and I happened to read it on my way into work, stuck in the car park. I should have known better, because it completely undid me for a few minutes. Once again, the relief of reading about how someone feels, how they understand, how they get it, can be overwhelming. And to have my feelings encapsulated, for just a few moments… Still overwhelms me, and probably always will.

Second, everyone is back at school and so far so pretty good. Daughter M has swung into her last year at this school with real vigour, to the point of having a school play audition from 5-6pm tonight. So watch this space. E’s numbers have been pretty respectable as well, with too many hypos however and a couple of odd highs. The change in routine means a fairly wholesale overhaul of his doses and ratios, so we’ve been chipping through that the last few days, with decent success. Fortunately his night time levels seem to have stabilised, and we had three — count them three! — nights of unbroken sleep.

That saying, he did wake on 2.7mmols one morning. We know the reason and it is this: he fell asleep without testing. We came in and tested him before we went to bed: 3.3mmols. Semi-woke him under great protest, forced in most of a carton of apple juice, and put him on a very low temp for an hour. This was still not enough, clearly, thus the 2.7mmols at 7am.

Lesson: he mustn’t go to sleep without testing. End of story. If he had tested, he would have seen he was too low (eg 5mmols or so) for the night, and had a biscuit, which would have done a far better job of holding him steady in the night.

(Heartache: that he has to do this at all. That this ‘life lesson’ is literally one about life. He forgets it, of course, at his peril. Which is, how shall we say, a stupendous drag.)

Sigh. We continue to live and learn. And learn, and learn and learn.

***

And all along, like our own secret supply of the sweetest music imaginable, are the kittens:

2 weeks old!

Archimedes, Eudora, Artemis and Little Miss Unnamed Yet at the back

Archimedes, Miss Unnamed, Eudora, and Artemis apparently playing dead

Archie standing, Eudora swatting Artemis, Miss Unnamed maybe cleaning?

As you can see from the captions, we are beginning to name them: Archimedes (or Archie) is the larger darker boy. He always looks a bit disheveled and bumbling, because he has long, plush fur, and also M says, because his eyebrows are tufty! Eudora is the lightest, a girl, and she is extremely alert: the first eyes open, the first out of the box. She also now comes toward our voices, which is heart-melting. Artemis is the darker girl (we think). Called thus because of the gender confusion, and because two members of the family are very into mythology (Artemis is often used as a boy’s name now, but is actually a goddess from Greek mythology, a huntress and goddess of wild animals and childbirth). Artemis looks like a delicate one, very fine face. She is third in development and shy, but now beginning to show herself. Miss Unnamed is really only slightly so: we are stuck between Pandora and Eurydice, the former because it’s like Eudora and they are both light, and the latter because she is a bit of a ‘follower’, more reserved — was the last to venture out of the box, and is frequently sleeping while the others are playing. Negatives about Pandora is that she let all sorts of evil out of a box! And that seems unfair to put upon a kitten (though M points out that Pandora also released hope, which was mega good…). Negatives about Eurydice is that a) it’s hard to say and b) it’s hard to spell! And what could it be shortened to in which case? Eury?

Anyway, as you can imagine they are the light of our day and HUGE time-wasters. Cleo is still confined with them, so I’m still doing lots of letting her in and out of the room. Cleo is also eating for Britain, so our cat food bills are tremendous. I allowed Schubert in the room with us today for the first time. Cleo was very relaxed, stretched out. He came in, she watched closely. He sniffed out the room, stuck his head in the box. By this time Cleo was on her feet. He and Cleo sniffed noses, and he left the room.

A good start!

For you real die-hards, I’ve put a 9 minute video up on YouTube. It’s a film of Eudora and then Archie venturing out of the box. Eudora had already been out once, and this shows in her far-wandering propensity. Archie is a brief explorer. Cleo was there and can’t figure out what to do with her wayward daughter….

If you do watch, I apologise for the 2 or 3 minutes of  filming into space… I just forgot what I was doing, alas. Also, mid-way through you can hear E (muffled like the adults talk in the old Charlie Brown and Snoopy films) outside the door. What he’s doing is telling me that he’s home from school and tested his blood. And that it was 15mmols and he doesn’t know why because he’s checked and he did dose for lunch. But that’s he’s corrected with more insulin and won’t have a snack until his level goes down — even though he’s starving. Argh. And heart-tugging.

Anyway, be patient. There’s some nice footage at the end. Such a good mummy!

Back in the saddle (nearly)

As is the way with life, business as usual has now taken hold: school and stationery preparations have occupied some considerable time, as has the trying on of shoes and uniform etc… The good news is that for daughter M’s final year at her school we won’t have to buy any more uniform! Yay. Everything more or less fits. Never mind that everything was a little baggy to begin with, and that her skirt — bought three inches above her ankle — now rides slightly above her knee. Never mind that the SAME P.E. kit has lasted E and M both in this school — that’s eight years, altogether. Good quality stuff, eh? Though by now quite, ahem, faded. And it was second hand when I got it! The truth is out.

The bad news is that E does not fit in one single item of his school clothes. In six weeks he has outgrown his shirts, his jumper, his blazer, his trousers and his shoes. Granted, he was looking a little ‘wristy’ as we say, in his shirts and blazer by the end of the school year in July, but now they are unwearable. Sigh. AND he only has two more years in his blazer before going into the top of the school where they all wear ‘home clothes’. Sigh again. And blazers are eye-wateringly expensive. Second hand shop, here we come!

Life with the kittens has settled into a very sweet pattern: Cleo scratches to get out between 6-7 am, eats and drinks, goes outside. Kittens snooze. Cleo returns in an hour expecting some fanfare, which she receives, then goes back upstairs, checks them, eats a bit more in the room, stretches out asking us to tell her how very clever she is and how much she is loved, then climbs in with them. We check on her over the day but although she sometimes climbs out and stretches (and oh yes, eats two more meals), she doesn’t want to leave the room. At about 5.30pm, she fancies a stroll and goes out, eats again, visits with everyone and goes back into her room. Last night for the first time she wanted out at 11pm, so muggins here had to stay awake long enough to let her into the room when she was ready. She also wanted ANOTHER meal, and was interested in traversing the top of the piano, which she miscalculated somewhat and tumbled down, waking the house with her dischord. Oops.

Schubert her brother has stopped being quite so cross with her, which is a relief. He now greets her at least. He has yet to meet the kittens; we’ll wait for 3-4 weeks for that. Meanwhile two out of four babies have opened their eyes completely and one in particular is very pleased with her ability to hold up her wobbly head and look out. The eyes of the other two, the darker ones, are half open. All can do a very endearing hiss when they smell or see something they don’t recognise. Completely soundless and expressionless, they pull back their mouths repeatedly. Then snuggle down with the others, job done. It’s pretty hilarious.

Eight days old!

We think we have two seal point Birmans, one of them the boy, and two chocolate point Birmans, though one of these looks a bit lighter in the ears… could be developmental, or we could have a blue point? Not expected, but hey. (Classic examples of Birman types here. Cleo is a lilac point and the kittens’ father is a seal point…)

***

Re E’s numbers, well. Generally pretty good, but some inexplicable highs. Since I last posted we’ve had two unbroken nights’ sleep: one was fine; another he woke up on 2.7mmols. Right. Then the last two nights at 3am he’s been high again, 13mmols. So we can’t yet find a way to get full nights’ sleep with any consistency. We do look for opportunities, but there have been reasons to get up every single night: he’s running high, he’s running low, he’s at the end of a pasta or rice dual wave, it’s the first night of a changed basal dose, we’ve had three different numbers the last three nights so we can’t risk it! Etc.

People weren’t kidding when they said adolescence plays havoc with blood sugar levels. There are many, many times when it’s just random, random, random.

And today he’s eaten like a horse. He’s always hungry again. For us, this usually corresponds to growth and fighting to control high numbers. Sigh for the third time. (Really, we are okay. It’s just when I look at it baldly I admit we’re tail chasing again…)

It’ll be fine. Some day. Just please lord let his new clothes fit him for a little while.