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Things were so fraught last week that although I had a lot to say, it all slipped out of my grasp…. We boarded the internet-less boat called ‘Holiday in a Hot Place’, and I left everything dangling.

And here we remain for another week and a bit. Several days in, we are unwinding, reading a book every two days, eating lots of tomatoes and soft cheeses. Not to speak of wine tasting!

E’s numbers are so far so okay, though early on an approaching cold combined with pizza weirdness sent him into a nasty, throwing up hyper (>15 mmols) that took us hours to conquer through 200% temp basals and overriding pump corrections…. The cold itself was hardly anything by comparison. Grrr.

Other than that, all the pool play and walking has meant hours off the pump, 50% temps and still having good numbers for the most part. Mornings tend to be a little high, but this is a holiday pattern: he seems to particularly GROW over breaks! We are also having more slow-digesting food than usual – pasta, rice, lentils – so OH and I are up once again every night testing dual waves – but with life this laid back it’s hardly noticeable.

Which shows how not laid back life normally is, sigh.

I’ll sign off now until after 9th August. A bientot.

— Posting on the move, tiny screen!

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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!

Spring is springing so hard it’s practically bouncing off the page! The sun has shone almost without interruption now for two weeks. The tiny showers have made all the grass green and the tulips livid with life.

1) Thank you to everyone who sent me messages (see About on this site, but I’m afraid you can’t hack into my email, 🙂 ) about my article in Balance, the Diabetes UK bi-monthly magazine. I do what I do because it presses upon me to do it. Just hearing from people and knowing that somehow we all have places to go, and that I might, might be laying one tiny bridge of connection down for folks — this is good enough for me. This is what it’s all about. Thank you. My column continues in the next issue.

2) The beach hut is the BEST THING since sliced bread. I’m writing a lot. The sun is shining. At the end of the day it goes grey, and the horizon mixes the sea and sky. I’m researching coastal terminology and just plain watching the water, the birds, the dogs being walked, the children playing, and the slow flow of the tide. The whole thing is astonishing. I haven’t felt this connected to writing life-wise in years. Years. (Yay!)

3) Daughter M celebrated her 10th birthday yesterday. Like me, she has a tendency to tell everyone she knows and thereby reap the rewards of good wishes! She was in possession of the Birthday Cushion from her maths teacher all day, which she could sit upon, carry with her, flash at everyone and generally enjoy. Her name was emboldened upon the big screen by the school library. Her class sang to her. She ate cupcakes. Her brother downloaded a wonderful arty hand-drawn puzzle game for her as a gift. She soaked up ‘the love’. She is ten, double digits for the rest of her life. And a cracking, special girl, much adored. Here’s to you, chiquita!

4) We are off to clinic tomorrow, to sort out Manky’s sites. Lordy. We are feeling brave and resolute. As I say, the sun is shining. We have raised the nighttime insulin to combat the growth hormone highs which have persisted pretty much constantly now for three weeks. Perhaps soon we can get a night’s sleep! The sun is shining.

Til when!

This is not a New Year’s resolution. You’d think it would be, but it’s not. At least I don’t recognise it. My resolutions, such as they are, tend to drift, tend to wind out of reach and out of sight before I’ve caught up with them, or grabbed them. They are ghostly, and are quickly swallowed by regret.

This, however. Well. What happened is I woke up four mornings ago and thought It is time. Coincidentally, it was New Year’s Eve.

It’s taken nine months to give birth to this place, since the last entry over on Schroedinger’s Cat

That was then, this is now. What has happened in the meanwhile is the gradual glimpsing of a shoreline.

***

Because having something chronic and unusual happen to your family is like being thrown out of the boat. I feel that so strongly I’ve put that in my sidebar, so it stays there forever. You are out of mainstream, out of the flow, without social direction or definition. The only thing you know and that anyone else knows about you and what happened, for a long time, is that you (and your family) are suddenly not like everyone else. And never will be.

***

I have never considered myself normal. It has never occurred to me that I wish to be normal, or to be in any way like anyone else. Indeed, more times than I can count I have gone out of my way to be abnormal, to be what seemed to be different — in dress, in attitude, in art. Etc. I have never had a problem rowing the other way.

However. With a diagnosis of a chronic illness in the family — and especially one requiring such relentless attention as type 1 diabetes — every moment of every day marks you and your family out as different. This differentness is largely invisible. But you ignore it at your peril. Literally.

And how I long now for a day of that old normality.  I didn’t know we were ‘normal’, but we were.

***

In the last few months my daughter, now nine, has taken to saying after something surprising happens (a trip, a slip, a head bash), ‘I’m…O-KAY!’, holding her hand up in the time-honoured index finger and thumb circle. This comes from one of her old favourite films, A Bug’s Life. It’s what Flick, the main character, says after slamming into a rock cliffside and dropping out of sight. ‘Are you alright?’ he’s asked. There’s a pause, and you see his face struggle into view…. ‘I’m…O-Kay!’ comes the shaken but cheerful response.

Indeed. We are okay now, more or less. 

p.s. There will be lots more on the whats whys and wherefores of type 1 diabetes, and probably everything else in the whole darn world…but I’m holding back the flood here. Stick with me and it will all come in gentle swells. I hope.

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.