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E returned in fine fettle on Sunday — less odorous than anticipated! — though the suitcase was a sight (and smell) to behold, of course. His duty on the last day was cleaning the chemical toilet… Oh dear. But he seemed to get through it okay. His sister had made him a smashing welcome home banner, which he acknowledged with real affection and appreciation. And within minutes he had managed to download his camera, shift everything to a memory stick and then onto a slide show on the television….

O-kaaaay. I didn’t even know you could do that.

Sigh.

He had taken a shedload of pictures, and narrated us through. Some really beautiful shots, and some great history, environmental concerns, and shots of wild horses (taken even in the rain!) for his sister. Bless! Will try to get him to do a guest post…

Several things to note from all this. Well, lots, but I have to be contained. Time is of the essence today.

1) the staff were brilliant. As were the sixth formers. On the first night, E had a tough time. He felt very sick, disorganised and probably panicky. One of the teachers moved out of his bedroom, and T & E moved in. The teacher slept on the table for the rest of the week.

2) everyone stopped when either boy went low. One of E’s misgivings was that he would be left behind when hypo, even though he knew someone would always be with him. But in the event everyone just stopped. No fuss. E said that everyone just used the chance to talk. To tell their life stories, he said.

3) it’s clear that E hasn’t lost the ‘give it a go’ quiet confidence he has had for several years now. Apparently he tried everything, and did everything. Even things that some others wouldn’t or couldn’t. There was one small activity: threading the needle, I think it was. They foot-holded up the inside of some rock, then through the top… Lordy. He did it. He said people pulled him through at the end, but he did it. Only a few did. I can’t help but wonder if his success is also about allowing others to help, trusting teamwork in the end. Interesting…

4) coming down Snowdon, E took quite a tumble and really bashed his knee. He felt dizzy and breathless.  The guide was straight over, making sure, as E said, that he ‘could move everything’. E said he could walk on it, and up he got. But what I want to say is that two or three more times in the next half hour or so, the guide asked how he was. That’s good care.

***

Those are some of the tangible things. But of course there are so many intangible lifts that come from an experience like this.

1) He wants to keep walking.

2) He knows he can manage extreme situations. He knows what he would do differently next time.

3) WE know he can manage extreme situations. We know others can be trusted.

4) Diabetes didn’t stop him.

5) Diabetes didn’t stop him.

6) Diabetes didn’t stop him.

7) And all that this implies.

***

Something has shifted. Some kind of small attic window has been opened. And beyond it, is sky.

Well, after reaching the summit to Tryfan two days ago, yesterday the boys in Wales apparently bog-walked (ewww! E reports bog water over his boots), taking measurements or some such — and then swam. Which I reckon was sorely needed, after several walks and no running water (ewww!).

Number wise he was okay all day, though a little high, but in the evening things went seriously awry. For whatever reason (too much free carb? too low a temp? the set becoming non-viable? — probably all three), at 6.30pm we got a message that he was 24 mmols (over twice as high as the high end of what we were all aiming for while he was away) and feeling rotten.

It was dark by then, and they have no electricity. E had been trying to change his set (due a new one) on his own, with a torch, ill from being high, and stressed to the max. And wouldn’t you know it, for the first time since changing over to sil sets, his pump read NO DELIVERY.

A number of things then cascaded into wrongness. E was holding up, but only just holding on.

OH talked him through. Minute by minute, several phone calls, clear instructions. Try a new tube. Then a new cartridge. We gritted our teeth as E described all his pump equipment strewn around his bed in half-darkness. Talk about stress!

Tell someone, I texted him, in some desperation. They will be sad to know you are struggling.

He was still 21 mmols, despite a huge correction.

All of us had forgotten that he remained on a low temp from earlier in the day.

At last the new set was in with insulin that looked viable. But E was terribly shaken, still high, and of course would not be able to join the others for dinner (it’s unsafe to eat when that high for obvious reasons: more glucose stacks into the blood).

When E is that high — and I think this is a common reaction — he becomes emotional and muddled. He has to make a supreme effort to exert his considerable strength of mind and intelligence to trying to gain control, to understand sequences. The added stress of being away, in the dark, and on his own, meant that for a short time, it was a losing battle for him.

This end, we were losing our own battles too. OH was preparing himself to drive six hours and go get him. I was wrestling with useless tears. Daughter M, once again, had wisely set herself up for dinner in front of the box.

At last OH convinced E to go to a teacher. Who phoned within minutes. She had taken control quickly. Found things he’d lost. Sat him down to wait. Established how long he’d been high.

We tried to explain how he’d be feeling. We said it should get better. By this point we’d set a high temp, and anticipated him coming down fast. She’d saved some food for him. If he’s not down in a couple of hours, OH began — we’ll drive him to the hospital, the teacher said.

Probably not, OH said. They won’t know what to do either.

And this is true. Don’t even get me started on what medics don’t know. How they will remove pumps. How they will run both glucose and insulin in simultaneously (completely counter-productive). How they might think that 2 mmols is fine (when it’s mega-hypo), or that 6 mmols is too low (when it’s within range). Or that, so long as the person is feeling okay, 18 mmols is not bad (three times as high as you want). I’m sorry all you medics out there, but these are true stories. The training for hospital diabetes treatment must be seriously deficient, and is entirely crisis-oriented. By hook or by crook, diabetics survive hospital intervention. But so often it is ridiculously and even near-dangerously cack-handed.

Anyway. E had some carb free food: cheese, ham, cucumber, and immediately began to feel better. In 20 minutes his level was 17 mmols. He ate. In another hour, he was way down to 9 mmols. By this point the high temp was off. He had to have some free carb or he would crash. In another hour he was, yes, low at 3.8 mmols. Some juice, and more free carb.

Like a yo-yo. Poor lad. He set a 70% temp to reflect the exercise of the day, and we all agreed he could make it without night testing. Crisis over.

Only guess where they are headed today: SNOWDON. The highest mountain in Wales.

He must be shattered. Up until nearly 1 am. A walk lasting many hours in front of him.

We’ve barely heard from him this morning — a rush getting out, apparently. I’m fearful that last night will hang over him, tempt him into insecurity, into double-guessing his judgement. He’s SO good at all this. He’s great. We keep telling him.

A little prayer then: let last night go. Start the new day. Trust your instincts. Know that you are strong, and can do anything.

Just a word here to say that living with Type 1 and getting out into the world and doing challenging things requires it. Lots of it: grit.

E and we have been in good text contact over the last two days. Lots of ups and downs. The cottage is disorganised and dirty. He wants his space and a sense of structure and control (a bit control freakish, like lots of well controlled diabetics, one suspects!). Can’t have that. A bit of a struggle.

I forgot to pack the scales. Don’t even go there.

So lots of estimating. A little added stress.

So far he’s had two mornings of heavy walking accompanied by almost constant dragging the bottom — floating around 4 mmols, with occasional hypos — for hours. He’s on 0% temp, eg no background insulin, and eating loads of food without insulin: cakes, cereal bars, sweets, juice, chocolate, sandwiches…

Then last night he had to negotiate raising the temp a bit to account for higher numbers in the afternoon — 12 mmols for too long to leave. 

Managed everything perfectly though: 60% temp all night, waking on 7 mmols.

Wow.

So today he undercarbs breakfast in an attempt to start his walk higher, and spikes way high (20 mmols). Under corrects but anyway dips low again all morning. He tells us they are taking a mountain guide and going out to climb a mountain with a rope. I send back a whoo whoo enjoy it kind of message, but feel myself  battling the urge to check my phone all the way through class…

Discover that this is what he’s climbing. I can barely bring myself to look!

And then this: constantly around 4 (he writes) and having tons of carb. But having the time of me life at the moment.

Bursting with pride. I’m at work, loads to do. But I’m about to walk upstairs and find someone just to say this to: anything is possible.

I’m willing to accept that there may be such a thing as being too alert to your cat. So let me state that right off.

However, the last few days with Cleo and the kittens have been utterly fascinating, and make me realise (all over again) how all animals have to negotiate — whether instinctively or deliberately — the development and independence of their offspring. How we may think one thing, but encourage another. How we may wave goodbye and then burst into tears. Etc.

Here’s the thing: two nights ago I was up for four hours trying to settle the kittens with Cleo. She had suddenly taken it into her head that they needed moving. They weren’t safe. Perhaps it was simply that the other basket was too small — which it was. They were like sardines in there.

Anyway, that evening I twice came to the door of the playroom to find her next to a baby with a wet scruff. I deduced (!) that she was trying to move them, and if the scratching UNDER our bed earlier had been anything to go by, she was planning to take them there, where they could not be even slightly contained… Sigh. So I shut the door. At 4am she would not be quiet. She called and called and called and called. She got out and ate. Came back and called. Searched and searched for someplace to put them.

Sigh. I was struck by an idea. I righted a box we had in the room, put a blue blanket in it, and moved the kittens in. I know she likes the blanket. The kittens were HUNGRY. She climbed in and fed. Phew, I thought. Went back to bed. 5am.

Within the hour she was crying again, clearly trying to tell me something. She was out of the box. She didn’t like it. She kept looking from the kittens to me and back again, like do something!

I had another idea. It was an open box, though a table ran along 2 feet above it. I knew, for some reason, that she wanted more privacy. So I took another fleece, and pegged it to the table (under the guinea pig cage, mind you…stay with me), and draped it like a tent around the box.

Hmm….she checked it out. She quite liked it. She purred. She climbed in. And the deed was done.

Now, what’s been interesting from this is that the move to the bigger box meant that for another day the kittens didn’t venture out. They had more room, and maybe didn’t need to. They kind of poked their heads out of the end, then most of the time Cleo would make noises and literally yank them back: your bottom needs cleaning. Etc.

She wasn’t ready for them to go. And they probably weren’t quite ready to go.

Because last evening and today, she’s done something completely different. She has gone into the room and called them OUT of the box. It’s hysterical. Their little heads poke out and they fight to get out of the box, getting stuck, and they tumble around her. She bats them a bit, bites their ears, lets them suckle a little. They stagger about quite happily and explore. After a few minutes, she stands up and walks into the box. And gradually they follow her in, and everyone settles down.

It’s so simple. She knew what was best. She really did. She knew that if she had someplace different for them, they wouldn’t keep wandering out of the box and getting a bit lost before she thought they were ready. She knew when they were strong enough, and encouraged them to get going, to play.

Wow. When the children were little, I always made decisions about ‘what next’ based on what I would call my gut instinct. But I didn’t know that it probably really is instinct, in the flesh. It’s a real, palpable and despite our evolution, necessary thing which pushes us forward, helps development and survival. At each turn — sending my eight year old to get a cup of water from the counter, sending my eleven year old up the hill to buy some bread… or even standing in front of our one year old (we’ve all done it!) holding out our arms (that’s right, walk to mummy) — at each turn, something could go horribly wrong. You dream about everything that could go wrong. Like I’ve seen in Cleo’s eyes — they’ve gone too far! make them come back! But you know it’s your job to say hey come out here. The world is good. The world is full of new things. There’s a bit of it that might be dangerous, yes, and sometimes stuff happens. Don’t I just know that stuff happens. Better to learn to walk and run and play.

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.

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!

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.

Probably possible! But when trying out the 45 degree sets two nights ago, E decided to do as they did in clinic and go through the steps with a soft toy. He chose one one of his older (but well loved then!) ones called ‘Manky the Monkey’.

Poor Manky. He held up well as E went through all the steps carefully, methodically, as he does. And it all looked alright at first, as you can see.

A Monkey and His Pump

Upon investigation though, we could see that the cannula/needle hadn’t actually gone in. Hmm…more complicated than we thought. The fixed prime (eg small amount of insulin to ‘prime’ the system ready for use) didn’t go in. And poor Manky would have gone very high very quickly!

Thinking we knew pretty much what to do and how to correct this problem (a too-soft backside!), E set up another and off we went.

Disaster. After a big build up (the inserter is much larger than the one for the Quicksets, and very fiddly to press and control at first), the needle finally shot out of the contraption — but didn’t go in. Something to do with angle, etc…But whatever the case, we’d had enough. E had had enough. We realised if we got it too wrong it could go very wrong, with the needle at an awful angle…

So we are off to clinic on Wednesday for some help.

Meanwhile, we continue to use quicksets, dragging out each sound one as long as we can. The set change tomorrow will last until Wednesday, when we can hopefully get going on the other ones.

Meanwhile, numbers have gone from being a little high just before the start of school — with high morning numbers in particular, very common — to now being a bit low. Culminating in an hour of 2.5mmols – 3.4mmols last night. Which was pretty miserable, and required the drinking of three cartons of apple juice, which made E feel sick and later upset his stomach, and an 1.5 hours of 0% temp basal. All at 11pm, when he’s dying to sleep.

Oh dear. A low day yesterday all around for some reason, and the last couple of days have been a bit low before bed, though not hypo. So it’s a ratio (eg amount of insulin to grams of carb) change for the evening meal tonight, in the hopes of tackling this. We think last night was so bad because he had three small things to eat at three different times (was in a short play and ate before, there and after!), so the too-high ratio of the evening rate was trebled in effect, if that makes sense.

You live and learn. And live and learn. And live and learn.

Manky is sleeping it all off in the green soft toy bin, anyway!

I have heard from two parents today: one, H, whose son was diagnosed only 10 days ago.

For both, and for me and us, the lasting through is so hard. The holding-up. The way your life is shipwrecked. And you have to wander around, slowly re-collected, gathering up, all the pieces, new and old.

I find myself being in the position of old hand. 18 months in. Like in grief, you watch yourself move further away from that moment of change, that time of unremitting despair and numbing hard work.

I guess all I want to say is that it’s not that I don’t remember before diagnosis – it’s that I can’t, without the same crush of sadness as I felt at the start. So I don’t take myself there often.

So in that sense, um, I guess I’m not much help. Sorry.

But in every other sense: we help each other. Our children will grow up strong and healthy. Burdened – yes- but like us, with a deep understanding of what’s important.

They didn’t need this. Nor did we. Nor did our families.

Damn.

Thank goodness for small mercies. Friendship of a whole new type, to a whole new degree. Even in passing it means something real.

Hang in there, all of us.

– Posted using BlogPress from my iPhone

Location:Tile Kiln Hill,,United Kingdom

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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Disclaimer

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