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.

High speed

It’s been a shock to go from my peaceful mornings at the hut to a life punctuated by the fast train from Kent to St Pancras, but so it has been: external examining at Norwich University College of the Arts for three days, home examining at my own, then to York for a NAWE meeting, then three more days examining at my own institution again.

Ack. Meanwhile the sun has mostly shone, despite the cool wind. Like life of course. Mostly sunny, a more or less constant cold wind. That you just learn to get used to.

Three items for report (how many meeting have I been in the last ten days, you ask?!):

1) desperate cat Cleo is going on a singles’ holiday this weekend. Eg we hope for kittens in late August! Watch this space. The relief will be mutual, to be blunt. The poor girl spends some of every evening trying to settle in the bathroom, with bed, tray and food. Poor thing. Poor us. At its worst, we can’t hear ourselves speak. And her brother hisses at her all the time… Bring on some peace (and for her, satisfaction?!).

2) the Tooth Fairy has only just recovered from being in deep doo doos in our house. Not one, but two teeth languished under daughter M’s pillow. For a WEEK! I know, someone shoot that fairy. But the worst of it has been M’s eventual understanding, once the glowering passed. I know the tooth fairy has been very busy, she says. Eek, I can’t stand the guilt! Anyway, now the teeth are in the fairy’s castle, and M has not only £2, but a rather glittery bracelet (hopefully not made out of teeth…).

3) E’s numbers have been generally better. Again, some weird and wonderful nights: a drop from 8mmols to 1.8mmols once (yikes!), and another of a random rise… But these weirdnesses aside, things have eased. We are off to clinic for CGM instruction today. Another matter for report….!

***

Finally, at the gym yesterday (for the first time in two weeks…really, thank goodness the place doesn’t have cameras. I don’t think it does, anyway…), I encountered one of my favourite songs of the moment, by Jolie Holland. She is, if anyone is still around from my other blog, one of my favourite artists, but this song…I don’t know. I listened and thought you know, life is random. Life is harrying and harried. And is all about risk, about doing what you don’t and can’t know. And sometimes it works out, and sometimes it doesn’t. On Jolie Holland’s website, it says this about the song:

“Palmyra” is a prayer for the broken-hearted and traumatized, both individuals and communities. The first half paints a picture a love-lorn traveler pulling herself back together after a disastrous affair. The second half is lovingly and respectfully dedicated to the hard-pressed people of New Orleans’ Ninth Ward, hallowed estuary of some of the finest music the world has ever witnessed.

(But the real place to check her out is probably her myspace page, in which I have just spent several happy minutes…)

For me, the song’s somehow about strength. My OH and I met over 25 years ago. We married 22 years ago a week from tomorrow. He is my soul mate and best friend. And one of the very few people in my life that I haven’t had to leave for some reason, whom I haven’t left and hasn’t left me. A gift in my life I never really thought my life would hold or be able to hold. How very very lucky and blessed we are in this way. Just wanted to say that. He got the album this song comes from for me. He’s not mad on the music, but knows that I am, and lets me dance and sing to it in the kitchen. Even while he’s making dinner. What a guy.

Growing pains

Well, things have warmed up here in the SE of Britain — even the rain is warm now — and with my hut days finished (sniff! pictures to follow) — my attention is turning to a) getting another hut; b) the garden and c) external examining, planning for next year, my own exam boards and and and…

Guess which one of the above actually takes up the most time? Yes, it’s the last one (Eeyore-ishly said).

ANYWAY. I’m mainly on here today to say that much as I adore my fast-growing beanpole of a son — who since Christmas must have grown three inches and now stands substantially taller than me and taller than his grandfather and not a million miles away from his *father* — we feel locked in a bit of a battle with it.

Herewith: went to clinic on Friday and the ol’ HbA1c (complicated averaging of blood sugar levels over three months) is the highest since diagnosis, and outside of high ‘normal’ for the first time too, eg over 7mmols. Damn. And other, much ruder, words.

We think we know some reasons for this:

1) all the fuss with the sets messing up. We had some stupendous, recurring highs with those problems, and knew that this alone would affect this HbA1c. (The new Silhouette sets, I am pleased to report, are still MUCH better, despite having been yanked out again by accident — ouch — in a game of football at the weekend. We were all no doubt suffering from sunstroke, because in that sort of running around he should have had it off anyway, but oh well! Soon replaced, bravely.)

2) growth hormones. Bane of everyone’s existence blood sugar-wise, except that of course growing is good. Very good. But after a couple of weeks of high mornings, then suddenly we had another week of low mornings, then you guessed it, another week now of high mornings. Bit disastrous. We just begin to think we need to change the basal rate from 12am-3am, and bingo! The trend has reversed. This is probably almost exclusively down to growth hormones. And probably too indicates that in the night all kinds of highs are happening about which we have very little awareness. This is disheartening in itself, as we are trying so hard. But we suspect that this is at the root of his higher HbA1c. We simply aren’t catching the night highs well enough.

3) Being slightly more laid back about numbers. This is a good thing, again. Healthy and to be desired. But perhaps we have let a little too much slide? The increments of vigilance are just so tiny, yet seem to make such a difference. Damn. We are NEVER complacent. But taking our feet off the gas is something we have done a little… But maybe we have allowed the car to slow just too much in this 50 mph zone…. Argh. You get caught by the camera whether speeding OR going too slow….

***

So I won’t pretend we aren’t a little bummed from this recent number. The doc however says it’s still WAY better than most adolescents manage to achieve. Be that as it may, we are used to better.

So, again. What are we doing about it?

1) Last night we went ahead and raised the basal for a couple of hours. He had a steady night on 6mmols.

2) We are trusting that the new sets (with their clear stability) will impact the next measurement.

3) E is expressing a clear desire to try a CGM(Continuous Glucose Monitor). This device measures the blood sugar level via the tissue rather than a pinprick, and is in situ for 7 days at a time. It is not entirely accurate, and you cannot dose insulin or take any real action on the basis of what it reports to the pump…However, you *can* ascertain trends in blood sugar, which will be enormously useful to us in a time where we are suspecting that we are missing highs. It is extremely good for discovering patterns, and we are extremely fortunate to be funded for it in our area. This, we hope, will help, even in this seemingly pattern-less time of adolescence!

It is to E’s credit that he now is firmly for trying CGM. It involves another ‘thing’ in him at all times, and another 45 degree insertion, which is what put him off it entirely initially. Now that he is used to the other sets, he is stepping up his game, and can face it. This is his decision.

Once again, I am proud of him. We are proud of him.

Chasing all this all the time is a true pain. And incredibly inconvenient in his life. His sights are set though. He knows he wants good numbers. And we will do everything we can to help him get them for as much of the time as seems sensible and realistic — and not obsessive.

So in two weeks we will attend our other clinic, at our shared-care hospital, to learn how to do the CGM insertion and set up the sensors. Deep breath.

Go figure

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!

Hut days

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.

Lord knows…..

But we don’t. After thinking the high numbers of the last post were set probs etc, here we are on the third day since the last change and ALL IS WELL. A relief. Stable ish numbers. A night’s sleep….

And lovely Cleo has passed the worst of being on heat. After two nights locked in the bathroom she’s to all of our great reliefs a bit more settled. Phew! No more earplugs, and a bit happier a cat….

Finally, exams: I phoned the school and they suggested 10% extra time to account for E’s lack of concentration. Which he has done.

It’s good to get in the habit of being obvious and up front about all this: hypo or hyper, he can lose at least 15 mins of a test to treating it. Now, he’s a VERY bright boy. He would do ok no matter what. We know this. The school know this.

But he never complains. He gets on with things. He thrives and excels. So when he says he thinks his performance is affected by his diabetes, the school listens. They want to set up similar formal provisions for him for GCSEs. Just to give him the best of all possible worlds.

They believe in him and trust him. I was quite choked up on the phone, hearing how much they thought of him. In his RS public exam the next day (part of a GCSE) his numbers were fine. But arrangements had been made for him to sit close to the door. All of the invigilators knew the situation. He came home saying he felt so much better now that nothing was unknown. Before he had gone into every exam explaining…. Uncomplaining and necessary, but hard work I’m guessing before an exam.

Anyway. For the first time I feel, tentatively, that the school is beginning to understand….

***

Morning at the hut.

- Posted using BlogPress from my iPhone

Honestly!

By now you can take a wild stab at what happens after I quietly whisper ‘numbers are more stable’, as I did in the last post. And you’d be right. THEY GO CRAZY!

Stability has been out the window off and on now for a few days. Why oh why? We don’t understand. We wonder if these new sets are starting to lose effectiveness after two days rather than the three of the old sets. But this hasn’t happened consistently, certainly not since the beginning… Can it happen suddenly? Who knows? Who flipping knows?!

So suddenly he wakes high yesterday, after 1.5 days with the set. We battle him down a bit, but he’s still pushing high. Battle down. All through the night we battle down, testing 4 times, running a fairly high temp basal.

Wakes at least stable from 4am, though too high, 12mmols.

Corrects like mad. Goes off to school and EXAMS with a temp basal on. We don’t want to send him low because of exams, but not too high either because of exams — both ends affect performance — so he texts back at 11am that he’s 17mmols.

Argh!!!!

Corrects, and raises temp. 13mmols at lunch. But then, suddenly, coming home he’s 19mmols! What?!

We’ve whacked the temp up to 200%, and corrected, and an hour later he’s still only 16mmols.

Argh!!!!

And to top it all off, he feels that his performance today was affected by being high. He had a hard time concentrating, needed to pee through half the exams, and had run out of water mid way through another.

You know, honestly. You want to climb into a hole. How unfair. I’ll phone the school tomorrow, but I don’t know what can be done…

It’s three days tonight since a set change. So we will change again, yes. But it’s been going wrong for half the time the set’s been in.

What the heck…

I’m sure I don’t even need to mention how very much I wish I had been able to be in my hut watching the sky rather than typing up reports and supervising the electricity man replace the meter and helplessly fielding texts from my struggling son. WHO DIDN’T ASK TO STRUGGLE LIKE THIS FOR HEAVEN’S SAKE!

***

And to top it off our beautiful girl cat is in heat in the most LOUD and DISTRESSING way. She sounds distressed and upset ALL THE TIME. We can barely talk over her. We are planning to try to get her pregnant in late June, for the timing to be right…Meanwhile I barely slept last night what with all of her pounding around and complaining, and being up and down like a yo-yo testing…

And the sun is shining and I’M NOT IN MY HUT. And feeling sorry for myself. And for my son, who really did nothing at all to deserve this. Bad luck, hormones…who knows. But he’s on a roller coaster at the moment, and all we can do is just keep running the insulin in:

And try to get the tub full QUICK…

Dammit.

The week that was

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.

Small waves

So we decide that the best thing to do is finally do a basal test with E. This involves concocting no carb meals so that we can get a good luck at E’s background or ‘fasting’ blood sugar levels. This means frequent testing too of course. But the early evenings and nighttimes have been very problematic of late: seemingly unpredictable, seemingly swinging because of foods (really?), exercise (really?), and growth hormones (probably). And we won’t even go to the issue of the set changes in the last few weeks. Heaven only knows the effects of that.

ANYWAY. So from 6pm yesterday, no carb. Great and inventive dinner of chicken marinated in yoghurt, mint, chili and lime — lightly pan fried — on salad, with some mozzarella slices. Then a sugar free jelly (jello). All of which adds up to maybe 2 g of carb.

SO. He starts a little high (9 mmols) so we have to correct and give half a unit of insulin, but don’t add anything extra for the food. Two and a half hours later he’s still too high  – 9 mmols. (This is without eating anything remember, so MUST indicate that during this time on this day the basal or background insulin is too low.) So we have to correct again. Two hours after that he’s 10 mmols. So we correct. Clearly being pulled high has outweighed the earlier correction. Then 3 hours later he’s plummeted to 4 mmols.

Sigh. This is *precisely* the opposite of what we had thought was going on, and which our adjustments had reflected last week. We had thought he was being pulled low in mid-evening (so we lowered the basal an increment) and he has been sky high in the mornings (so we raised the basal an increment). Whereas last night’s test revealed that — for that day, anyway! — he was as a result too high in the mid-evening and too low in the morning.

Back to square one. Or maybe not. Maybe it’s a one-off. Certainly we feel that his morning rises have been almost entirely hormonal — and irregular, unpredictable in the extreme. This is where we wish for a) smaller increments on the Medtronic and therefore finer insulin tuning and b) a willingness on his part to deal with continuous glucose monitoring. It would help enormously in this case not to just have little windows into his levels, but watch the pattern of it… Oh well. In time.

Add to all this that yesterday was a ‘stay at home’ day, in which he didn’t get out of his pajamas, and really, the test can only be a bit accurate… His levels will be quite different we suspect on a school night. We already run him on two patterns on the pump, with different basal rates — one for school, and one for weekends and holidays — so we no doubt have to do two ‘fasting’ basal tests too, in order to get anywhere.

Sigh again!

***

The good news is that another silhouette (45 degree) set is in. The positioning of the hand and the body can be very awkward and unsettling, but he held on to his nerve and did it. Done!

***

And finally, I wanted to show you what I did on Friday. I looked at life for really quite a long time from this angle. And wrote four poems. I don’t know why the coast has set me on fire in such a way, but it has. As a friend said, they are just coming out of the oven cooked.

I watched the tide come in, and how the angles and rapidity and groups and heights of the waves changed over the day. I’m completely fascinated by this. It’s meditative yes, but also occupies my mind in an unaccustomed and direct way. I focus, really focus, on what’s in front of me.

Enjoy. Notice the filigree patterns of the water on the beach, like lace. And the way that sometimes the waves surge forward, and sometimes they just drop. And that they arrive in groups, and that a third of them are larger than the others… This all just screams poetry to me. I realise this might just be me, however!

The Shape of Things

I’m sitting in the beach hut, and I’ll admit my mind is a little fuzzy. Two reasons, I suspect, for this: beauty overload; and too many chocolate fingers. They have nothing to do with each other, but both lead me to a bit of a spaced out state!

The sea and the sky are an almost white blue-grey today, and there is only the faintest horizon. I’ve already drafted two poems this morning and expect to do another before packing up for the day. This post, in truth, is me ‘holding back’ from the next piece. It’s not quite time to write it. Not sure why. But a little while longer coming to the boil is what’s needed. Maybe ten minutes or an hour, no more – or the pot boils dry and can’t, in my experience, be re-filled.

Our trip to clinic yesterday was useful, energising, and hopeful. We had done everything right with the new 45 degree sets except pinch the skin in order for the needle to get proper purchase on and guide the cannula in. We all watched carefully as our brilliant Diabetes Specialist Nurse (DSN) demonstrated the insertion on a blue cushion (no Manky!). And then E, with the same quiet clear-headedness and courage he has shown from the beginning of all this, did all the steps on himself.

His father and I watched as what looked like a huge needle catapulted into E, skimming just under the surface of the skin. Perfect. He peeled off the backing tape, removed the needle – leaving the cannula in of course – and voilà. One of his final sources of real distress conquered without any evident hesitation.

So far so good. We discovered two more options to try if these sets prove difficult or not right in some way – again, bless our DSN’s pragmatism.

But right now E is very pleased, as are we. Many more sites for sets will be opened up if he stays with them. And they are much flatter than quicksets.

And you know what: NO PAIN except a pinprick for a couple of seconds. Compared to the teeth-gritting and watering eyes of every set change in the last three months, well…. Any chance to not have to be QUITE so brave he welcomes. And lord knows we want him to take it.

– Posted in the Little Blue Hut