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Things kind of took a nose-dive on the CGM front last week (much like, indeed, what happens to blog stats after a post: up up up, then two days later, down down down).

ANYWAY.

The damn thing was hardly ever within spitting distance of a fingerprick test. Of course, the delay is 15 minutes or whatever, so it won’t ever be the same, BUT it also failed to show trends accurately, once having a stellar moment of showing 6.5mmols all night — and in reality, E woke on 2.2mmols! Argh!

Then, seemingly arbitrarily, suddenly a number would be close, and showing accurate movement…. Sigh.

We are the process of trying to find out if there are methods of a) calibrating b)reading c) insertion that may help things. Any thoughts welcome!

In the meantime, our path down CGM land is blocked. We don’t have another one in. E has understandably declared it next to useless for him. I’m sure this is not irrecoverable. But it’s important not to waste goodwill: when we have a clearer idea how to help things, we’ll try again. Pressing experimentation on a teenage boy with lots of better things to do is just not a good idea.

As I said, understandably.

***

I’ve also got the hump because just as my sister arrives in town the weather goes grey and rainy. DAMN! We are having a lovely time nonetheless, but it’s a bit of a shame after two weeks of hot sunshine. Damn again.

***

And just so’s you know: I’ve created a ‘Place to Talk’ page. It’s, as E would say, pretty random I guess. But I wanted to make a spot for people to visit and just exchange stories, or say something, anything. No threads, no structure. Just a place to get something out, or celebrate, or commiserate, or observe.

It’s been there for a while, but Louise has started us off, so I thought I’d now mention it. Thank you Louise!

Well, it happens all the time. Only each time, you think: I can’t do this. Anymore.

But you do. Because that’s what you do. That’s what humans do, every which way and in all states of mind and body.

We have the capacity to start again, whether that means picking up where we left off, like a thread lost — or whether we must indeed re-build from the ground up, after catastrophe or death.

All these things have come my way in the last 24 hours, one way or another. My stuff, but stuff too surrounding people I care very much about.

1) in a sudden and unexpected shift, the CGM now seems to be serving a purpose. Several times a day E looks at it when he wonders what he is. Saves him two or three finger pricks a day. Looks at it in lessons, out of interest and for reassurance, he says. He says, it’s worth it already. And I’m stunned. And so we start to look up, start again.

2) one of my very dearest friends has undergone a freak event at her old childhood home in the States: a tiny tornado destroyed it, when the whole family was sitting at dinner. No one was injured, but how do you know where to start? I guess the answer is, you start again. She knows I’m thinking of her, but in case she forgets: I am.

3) and a long-time friend and colleague of OH died peacefully two nights ago. Perhaps mercifully quickly, given the situation. But we feel for his family, and thank him for his friendship and real gentleness in life.

So. It’s been a time to reflect. On what is possible. How hard sometimes it is to get there, and to know this, not to speak of just plain carry on. But here we are.

Today it has been cloudy mostly, warm. And this evening, the sun manages to break through. Time to water the pots. You have to work at it everyday, but the rewards are of course flowers.

Pots in my garden

My hanging basket!

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.

When E was diagnosed he stayed in a nearby hospital, about 30 minutes away. It isn’t our local one, but has a paed ward, etc, so that’s where he was.

I’ve since had no reason to go back. All of our consultant appointments are at the local hospital or at our shared care hospital some one and a half hours away.

I went back two days ago to pick up a CGM for E — great news in itself, and more on that later.

The ride there wasn’t great, but I was under some time pressure and that was occupying me. Then when I arrived, it began to hit. I remembered that day. OH had gone ahead with E, and I had joined from work. I remember not being able to find a parking space. And becoming hysterical, screaming and crying at the parking attendant that my son had just been admitted. Literally. I remember being completely and utterly beside myself, so desperate to get into them, although I knew that they would just be sitting there waiting to be seen….

Back to two days ago. I picked up the CGM. No problem.

I got back in the car and started driving out. And was overcome by memories. How I rushed to get back to my daughter, still at school, driving down the getting-dark road. How my father-in-law rang, having found messages from his son left all over. I pulled over to speak to him in that petrol station. My father-in-law, a retired doctor, took the symptoms from me. I sat there and said it over and over. I don’t know what he thought of me… Then, he was quite silent, and said he would phone the rest of the family.

So two days ago I drove back on my own just as I had done sixteen months ago. It was darkening then, and darkening now too.

I wish it had never happened, any of it. And I don’t like going back to that time, though clearly it is never very far away. For me, remembering what things were like before diagnosis is one of the very worst aspects to all of this. Does that sound selfish? And specifically, it’s the memory of how I felt about the future, what I thought the future would be like. I know we can’t predict it. But not knowing is part of the lightness, the hope and possibility of it.

The drive back from the hospital reminded me how very heavy diagnosis is. The weight of it and all it means. The whole future, so many ingredients of that future, barreling in on you, immoveable, endless and permanent. And worse, this future is your child’s. Your child has to face more in the future than you ever, ever did or wanted to. And none of them are positive, or even, I have to say, particularly hopeful.

As parents and carers and believers in advancements and how our attention can help, we search for brightness. Which is our job, and the best we can do, yes.

Over time, we have all pushed our way out from under it somewhat, but I have to confess that with diagnosis a rock became lodged in me. Perhaps like a gunshot, or shrapnel. And it’s like lead, dragging itself to a memory or a feeling, stirring just when I think so much has grown up around it.

And I’m going to share something else. Soon after E’s diagnosis, in one of our tearful heart-to-hearts, my daughter said it all so well. She said, now I know what forever is.

That’s right. And it’s not really a thing to know. It’s so heavy to carry around.

Setting sail

In November 2008 my 12 year old son was diagnosed with type 1 diabetes. The effect of this event on me -- and on our nuclear family -- was like being thrown overboard and watching the ship leave.

'Dealing with type 1' in the family has morphed into another sort of 'dealing' -- a wholesale resituating of parenting, of family dynamics...of life.

At my son's diagnosis I could not to locate a record of what living with a type 1 child in the family is like. I could not see myself or our family anywhere. I longed for a starting point, a resource and a sense of the future. Being a writer, my instinct is to write it. This space, I hope, is a start.

Blood Sugar Ranges (UK)

<4 mmols = low or hypo, life-threatening if untreated
4-8 mmols = within target range
8-13 mmols = high but not usually dangerous
14+ mmols = very high, or hyper, life-threatening if untreated

Bubbles

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Distance Travelled

Disclaimer

I am not a medical professional. Any view expressed here is my opinion, gleaned from experience, anecdote or available research.