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Is it very bad if I take this one chance in two weeks to post – seeing as I’m sequestered in a Starbuck’s waiting for straggling students. Straggling and bedraggled as it turns out, in the light rain.

We are in town ‘doing’ some psychogeography – a walk following an algorithm. But it’s wet, alas.

So. News in brief:

1) E again running high in the mornings. Growth. Herewith ends our 2 week stretch of unbroken nights. We must get up and test to try to ascertain at what point he is rising…

2) but not react too aggressively because from Sunday he is away in Wales for a week, no running water, no electricity. Snowdon to climb. Heart attacks to give his parents. He will set running a little high (but not too or he will feel rough and be low energy) the whole time. Hence we go easy on the night levels. For now.

3) this trip should be fine. Should be great. Everyone is prepared. My motherly concern is that he not feel too alone in having to deal and make so many hour by hour by minute judgements in the no doubt changing and out of routine environment. We shall see. Gulp.

4) term has started for me. Hence the headless chicken thing. I think I will come up for air around early November. Alas again.

5) it’s raining. I said that, didn’t I?

6) the KITTENS are spectacular. Like popcorn. Heads held quizzically. Napping in the most awkward positions (sliding down sofa arm, in someone’s crossed ankles). Photos. Will add vid when I get home.


They are now of course escape artists so are underfoot all over the house. And unbelievably lovely. What an experience. And mama Cleo has just been so happy, calling them, checking on them, grooming them. Even though they are weaning. So salutary really….

7) we went to Cornwall for a flying visit – very gorgeous. St Ives Tate, surf beach, and the Eden Project. (sorry, will imbed links at home!) Glorious weather and a special gift of a time, just before we go blinkered for three months…


— Posting on the move, tiny screen!

After barely three days’ respite, little girl cat Cleo is on heat — AGAIN. We are gritting our teeth. She is doing something altogether different, but no doubt just as taxing. About another two weeks of this, all being well. We hope for another little mini-break for her. Then maybe making babies. And everyone will be happier… there is too much hissing in the house now, and not just from her brother Schubert, who is fed up to the eye teeth with all her moaning and constant IN YOUR FACE – ness. We keep putting her in the bathroom with a litter tray, food, drink and a bed. Her boudoir, in which she can recline. Fat chance.

AND: a day when E has helped me make a postcard for my hut poems. Okay, he’s done the whole thing (:-)). And here it is, the front image, and the back poem. Splendid job.

Hut postcard

(Sorry, on my computer you need to click once to go to some page in space that says ‘Hut postcard’, then click on that and then it finally downloads. Why? Who knows.)

So we go for a milkshake from the dreaded McD’s. Very unusual. Get a medium milkshake. Read the carb content from the handy placemat. Hurray, McD! Says 70g CHO. Sheesh! We think: a load of carb. Sounds TOO high. Settle on 55g CHO, and agree to pick up the pieces later if he goes sky-high. Two hours later he’s a steady 5.8mmols… Hmm… And still hasn’t gone higher.

So we wonder: Mr McD, what you playin’ at?! If we’d done the full 70g, it would have been hypo city! Oh dear.

Just another day in the land of managing diabetes. And life. And getting through both. For the moment!

Well as half term approaches, so my days at the hut are numbered. Sigh. Being there has been an eye-opener. A gift. And a lesson. Namely: the more time I have, the more head space, the more I write.

This probably seems a simple equation. If x = y, then 2x = 2y.

Not exactly, however. In reality, if time x requires me to sit and write RIGHT THEN, or I won’t get anything done for another week, then yes, I might produce y.

It’s an eked out creative existence, though, one put together *between* other things. I’m lucky, I can usually write something when I have even the tiniest slot of time. I’ve trained myself well!

What I did not anticipate was the exponential effect of doubling or even trebling x. And then adding another variable, let’s call it z. Now z is neither x (time) nor y (work produced), but in combination with x, z seems to have an incredible effect on y in any case.

Z is white space. Z is free fall. Z is nothingness. So if I were to include z in the equation like so: 3x + z = ?…I could only quantify it as zero. In which case it has no effect on the balance of things.

Ah, but it *does*.  This kind of equation for my time at the hut seems better: 3x + z = 3y + z. Where z can be ANYTHING. And even to look at, it expands the equation, it makes it open-ended, infinite, etc. And this expansion is partly what this feels like. Anything is possible.

Saying all this, I have the feeling that what I’m really talking about is trigonometry or even calculus, where equations are not worked out around equal signs, but around functions, or change. And then what you put in can have an exponential effect on the result.  Which is even closer to how I feel…. But I can’t remember anything of trigonometry, and passed college calculus by the skin of my teeth, so oh well.

Suffice it to say that z has entered my bloodstream now, and I will always be on the search for, and respect, the empty space and freedom z brings. It is invisible. And vital. And not a waste of time. So there.

Some more photos then from the last week or two, when suddenly it became summer. I became obsessed with my actual view through the hut window… Rothko-like I thought… and of course wrote a poem about it.

Keeping a blog sometimes feels a bit like staying in touch with an old, good friend. You think oh I need to say this, or I need to say that. A part of your brain holds ‘blog things’. It usually works quite well.

Until you drop a stitch. And of course it unravels down the whole piece of knitting, putting a kind of empty path through the middle of it. Damn.

So this last week and a bit, I’ve dropped a stitch. At least. And it’s been depressing, to think every day, oh yes I can say this, and I can say that — and never get to it.

Reasons are good ones: writing in the hut; and university work. As well as normal life, but hey.

***

So it’s list time, just to cover bases. This is the worst thing: I can’t just LEAVE IT.

1) new infusions sets are working so well we’re in shock. Insertion is much easier, done in a flash, and since we started with them, we’ve had NO error messages from the pump, MORE stable numbers (generally, see below!), and THEY HURT LESS. So an all around thumbs up!

2) we have however had two completely uncharacteristic missed doses, when we all just kind of forgot to give the insulin — within 24 hours. The first time we caught it quite quickly. E was high, but no ketones and feeling okay.  Insulin given, and job done. The second time he’d been running a little high anyway (we think from the end of a cold), and three hours after the missed dose, he was 20 mmols. Ergh. Within a few minutes, he felt bad. A few more minutes, and despite correction insulin being on its way in, he felt positively dreadful. We had to pull over while driving home while he got air. He thought he was going to be sick. And he felt this way for another two hours. For him, there is NOTHING worse than being high with ketones. It took another six hours, running temp basals, for him to come into range. Such is the ridiculously high price of forgetting to do one thing in certain circumstances.

3) We have figured out we think for certain that E actually tends to run slightly LOW when colds are starting and coming out. Unusual I think, but this seems definite now. Then, after the worst is over, he runs high for a couple of days. Oh joy!

4) It’s Sounds New week, which means we have all been rather hither and thither. Esp OH. So I’ve been having to keep about a billion things in my head at once: lunches, drop offs, pick ups, swimming gear, dry cleaners, paperwork. We usually split as much as we can, but this week of the year, it’s always like this — a bit overwhelming! Being a parent and working, being a partner and working — and trying to do a decent, open, sound and not too controlling job of it — is overwhelming sometimes. How’s that for stating the bleeding obvious, as they say?!

5) And yet through all this (and uni work — have I mentioned that?! A bit of a trial to keep up with these weeks, but oh well…), I have been to my hut! Three mornings this week. The work is still coming. There have been big waves. So I’ve made a Big Wave link. I have become aware again — and not for the first time, but for the first time in a long time, 5 years I think — how delicate a quality creativity is. How easily the imagination could be swung from itself, and everything be lost. It’s so important not to disturb the surface — but too, to disturb it, to dip down like a fishing bird, and find something. If you get in there and swim and splash about, you’ve got no chance. So I’ve spent a long time — hours maybe — trailing my fingers in the water: watching, listening, being, making a few notes. And soon enough, as long as I don’t move too fast, I hear a voice — mine and not mine, of course — that is the (maybe temporary) first line of a piece.

I’m so glad that this rich place near the surface hasn’t been wiped out by so many things happening in the last few years. I feel like a poet again, like when I was drafting How to Be a Dragonfly, which happened in a similar rush. To be honest, it’s a source of tearful relief.

***
So, Bigger Waves. Madness, I realise. And sorry about the last minute shift of point of view in this. Like writing a story, I suddenly thought hey I know what I want! I want the pure white froth… But by then it was too late. If it were a story, I would go back and re-do the whole thing with this in mind. But it’s not, so here we are.

Okay, so after that massive low (which, btw, in case anyone is wondering, can actually do damage… This is not just parents’ hysteria here — oh my baby, etc. Severe hypos can impair function. Long term. Them apples indeed)….ANYWAY.

After that massive low, E as predicted did fight lows all day, having two mild and one rather worse (2.9) hypo. We reduced the insulin overnight, knowing full well he probably would be high because maybe the massive low was a one-off — and it was. He was high in the morning.

Last night we back-tracked on the insulin, raising it again, and he was slightly low at 2am. Woke him up for some juice. Woke in range at 6.30am. Phew!

***

Honestly. I am SO tired. The last two mornings I’ve texted OH to ask if he is CERTAIN we had coffee with caffeine, as opposed to decaff, in the morning. He claims yes. But I could close my eyes RIGHT NOW and sleep.

It is not to be. Life says that I’ve marked and consulted about marks all day. I’ve seen two students, both chasing me for references. Eek. (One by-product of all this is that I now quite often think I’ve done something when I haven’t. Or is this just age? Hmmm…)

I’m home now, having handed the Reading Series reins over for the night to two more very helpful graduate students. Because I’m due out to dinner later. With a VIC (Very Important Composer). Which means that OH cannot do the child-runaround that he normally does, occupied as he is with keeping the VIC company.

So. I will head out at 5.30pm to get daughter, who is busy in the BEST after school club on earth: her (yes, just her!) and her Design Technology teacher, making props. Mum, she says, I got to use a drill! We spray painted outside without masks! Mrs F walks around the studio in her stockinged feet! 

Hallelujah. Good on Mrs F, I say. Daughter is in hog heaven.

Except that this club is only one term long. So she still needs to go to ballet (which she refuses to give up) that starts right after. She changes at school, and snarfs a snack in the car.

THEN home to make them dinner. Then out to dinner myself. Any ideas on what to wear warmly welcomed…

***

Tonight E will babysit daughter M for the first time, properly. Two ish hours. Another thing the big D called diabetes has done is slow down his progression toward independence. What if he has a hypo? Will M know what to do? Will he? Is that all just too much to ask?

No, it’s not. He’s the most responsible young man in the world. She is alert. They love each other. He is desperate to become a babysitter. He’s a good lad.

So we will go out.

Just in case you’re wondering, he’s had one hypo today. And exercised, and put a temp basal (lowered insulin) on a bit late. But he’ll be fine. We are ten minutes away.

And life is all about small steps.

Quite a bit to mention…As I become more used to this again, once again it becomes clearer what to say. Like writing. Once the fluency is there, the facility, the naturalness of it…It’s all easier to do. Flexing the muscles.

1) Semi MC-ed the competition awards for the wonderful writing group Save As last night. What a treat! The work was fab, and the people great, and it was so very good to see so many from all over, from so many groups and walks…All for writing, for listening, for appreciating. Loved it. Read a bit from the developing memoir about diagnosis and subsequent feelings. Bit harrowing! But done now.

2) A GREEN day two days ago. Joy of joys! The THIRD in 15 months. Remember ‘green’? When blood sugar numbers are in range? Just to set the record straight: E has actually REALLY good numbers. We work hard for it. He works hard for it. And it’s a big pain in the backside. His average readings are actually very good for an adolescent, for which we breathe a sigh of relief. Consultants are delighted with him. However. Even with a laudable HbA1c (average blood sugar level over 3 months), he has only had 3 all green days in 15 months. Imagine this. Over 50% of the tests are not right. Not in range. The overall is good, but the daily is crap. The frustration is nightmarish, for him and for us. Once again, we are at the ‘you can’t win’ scenario. It’s no wonder that for so many, giving up is the next step. You can’t get it right.

There is a flipside to this. You can’t get it right, but in the end you are winning. Slow and steady wins the race. In this for the long haul. Don’t sweat the small stuff. That’s the good way of looking at it. When you can bear to look at it at all, that is!

***

In a section all its own is the recent private viewing I attended by our gorgeous and mega-talented dear friend, Nancy Wilson Fulton. It was a special evening. Her photographs positively glowed from the walls, seeming to make space where none had existed before, like the back of a cupboard leading to C S Lewis’s Narnia. 

Remarkable. Felt quite choked up. M went too, and steeped herself in her favourite friend’s artwork. They are like peas in a pod. The best bit: when asked by a dear friend of Nancy what animals she liked best, M replied, with some hesitation but a fixed determination to tell the truth…’Rodents, actually’. A bemused silence ensued.

Bring on Mimi and Peaches! (Still in vet, sniff!)

Here is Nancy’s website and her Flickr site. And here’s news about the exhibition. You have to drink it in.

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.