You are currently browsing the tag archive for the ‘temp basal’ tag.

Yes, it’s been a bit like that: like ha ha let’s play ping-pong…

Sigh. Two nights ago E is 10 mmols at 12am. I do a correction dose, thinking okay not  bad number, little unusual to be that high 4 hours after eating, but hey… Then at 3 am I hear him coming to our room. He’s big now, bulky in the doorway like his father, and for a moment I have no idea who it is! Then he says, I’m 24 mmols and feel absolutely awful.

A sudden spike like this hasn’t happened in a number of months. And of course it would happen when R and I are both hammering through huge piles of work — markings, plans… Hence why I’m up at 12am testing him!

Anyway. Nothing to be done. All hands on deck. Check pump is working as far as we can see — fine. Give whacking huge dose of insulin (what the pump recommends plus a whole extra unit) and put him on 200% temp basal (eg twice the amount of insulin he normally has dripping in per hour).

We wait for the insulin to take proper effect, which we know will be about an hour and a half. Meanwhile E feels sicker and sicker, and then, with awful predictability, begins to throw up. We know he has ketones. He tries to drink water, but can’t keep it down.

An hour later his level has hardly come down, 22 mmols. This too is not unusual — with such a high, the body can become resistant, and it takes more aggression with insulin to lower things than it normally would. To cover all possibilities (in case something invisible is wrong with the infusion set currently in him), we do a set change. E as usual does everything himself, but we can see it takes everything he’s got, as he fights to do it between bouts of retching.

We correct again, again overriding the pump (which remembers what it gave an hour ago), in case some of the last correction dose didn’t actually make it in (in case the set was faulty: see the inexact science of all this! All guess work! And too much insulin of course will send him crashing into hypo, so you just do it and pray…).

It’s pretty dire. My heart breaks for him. He’s so exhausted he dozes off, and so I go back an hour later: 11 mmols, a massive drop.

Phew. It’s over. By this point it’s 5.30 am, and we are due up in an hour. I go back to bed, fearing that with all that insulin sloshing around yet to take full effect, he will be hypo in an hour. But I’m desperate for sleep.

At 6.30 am, he is 8 mmols. Not hypo. Phew again. Made it.

Poor E soldiers on. He gets up, gets himself out for school.

We can only think this is all from his cold. Which drags on and on: cough, chest, nose. I’m watching him closely for infection. He’s not 100%, but surviving.

So yesterday at school he begins to go high again, but manages it himself: overriding the pump for a correction dose, and putting himself on 120% temp basal all day. He wrestles his levels down… And we hear nothing about it until we are all home last night.

It’s hard to overstate the pride I feel in his grit. For getting through the night and pressing on, but also for then making his own decisions, the right ones, yesterday.

It’s also hard to overstate the grief I feel for a future where he will have to make it through nights like that on his own. He will have to do this stuff with no one beside him.

Once again I turn away from this thought. I can’t make it better, ever. I never wanted my children to have to be this strong. Yes — like I had to be. Those who know me will know what that means, and those who don’t will just have to believe me. So if there was one thing I wished for my children, it was not to have to deal with big heavy life too soon.

But life has dealt us this hand. This arbitrary hand. And our children will have to endure. E will have to endure things that most can’t imagine. The potential toll on his mental health, not to speak of his physical health, grieves me. My children will have to be unusually strong unusually young. Like too many, it must be said. Still. Why can we not protect our children?

***

I know that they will make it. Are from stern stuff, whole stuff, sound stuff. And they have us, who have with every fiber tried to give them what they need not to feel too alone too much of the time…

I know all this. But it all seems just something I tell myself to feel better when it hits me in the middle of the night.

 

So the reason R was in Japan was to deliver a lecture and to have a piece performed. All of which he enjoyed a great deal, and which went well. Even the simultaneous translation bit, which must have been a remarkable experience…

So he receives a fee. In cash. Which necessitated him doing the most uncharacteristic thing of shopping. In order, you understand, not to end up losing lots to commission converting the currency back.

So he returns yesterday positively laden with gifts: some hand-painted small ceramic somethings — very beautiful, eight of them — a very finely worked inlaid wooden box, pashmina type scarves for M and me — again, so finely made, pure wool, so soft — a couple of small prints, a couple of Shinto good luck charms (‘traffic safety’!), a brilliant duty free watch for E (much needed), and a bit of duty free bling for me. Packets of rice crackers and rice sweets. As you do.

 

Every girl deserves some bling!

 

 

So last night the family was gripped not only by the presents, but also by the origami birds and asymmetrical wrapping lavished upon each gift. The classy ribbons, the display boxes. Even the stickers holding the ribbons in place and the bags closed were things of beauty somehow.

So none of this was particularly expensive. But the care of the presentation, the boxes and bags and tissue paper…is almost breath-taking, an experience in itself and unto itself. When straightening up, I could not bear to throw anything away, even the paper and said stickers. I put them in our ‘bag and wrapping’ drawer in the kitchen.

So how do we — us, the Japanese too — marry using so much paper with wastefulness, with recycling? And if I’m honest, with the almost cleansing aesthetic pleasure that the results, the process, bring?

However we slice it though: it’s so good to have R home.

***

Meanwhile E battles a long-lasting, dragging sore throat which began toward the end of hypo lane last week and is now gradually wearing him down. Probably the same one that kept his sister off school two days the week before. His levels are becoming quite irregular — 4.4 mmols yesterday morning, 17.5 mmols this morning! We are all just reacting — no choice — and he soldiers on. Has a Spanish assessment today. Doesn’t want to miss it.

Sigh. We correct and send him off to school on a 200% basal temp, fingers crossed he doesn’t crash.

And M has brought her stunningly beautiful inlaid box into school. Along with its wrapping paper. And the blue origami bird.

As ever just when you think it’s safe to go out…. E spent ALL of Wednesday hypo-ing (it’s Saturday today). At least SIX hypos. Dig it. Just could not get back up. As I wrote to a friend, by the time he got home from school he was literally scraping six month old sweets from the bottom of his bag to get some sugar, having finished off the four boxes of juice and whole roll of fruit pastilles which he always carries with him.

Sigh. That first day we thought we’d nailed it: discovered that he’d forgotten to temp basal from his exercise in PE, and also somehow that he’d been on his weekend pattern for the pump — which means he’d been getting more insulin across the board.

Aha! we thought, that explains it — and changed nothing.

Thursday rolled around: four hypos. Hmm….

Many of these hypos have been in the 2 mmols range — very low, in other words. So we took action, changing basals all over the place.

Friday: one very low hypo. Too high in two more places.

Argh.

Then somehow we forgot to put pasta on a dual wave (drip the insulin in) last night. So he took the full whack of insulin for 95 g of carb up front, followed by 29 g for a bowl of ice cream, 20 g for a packet of crisps and 10 g for some chocolate…and by bedtime was low and plummeting when we discovered the mistake. In went the juice and fruit pastilles…. but of course this morning he woke on 14 mmols because the pasta GOES IN LATE, the HYPO TREATMENTS STACK UP more unaccounted for carb, and THERE WAS NO INSULIN to cover ANY of it.

Sigh again.

It’ll be fine. But something’s changing. Temporarily. As always. We’ll just get it right, then have to go back to where we were.

Am I allowed to sigh three times?!

And tomorrow R heads off to Japan for nine days.

Ack.

In the inimitable words of the fabulously plotting penguins in the film Madagascar: just smile and wave boys, smile and wave…

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.

So, you know, all is going well and then all of a sudden two nights ago before sleep E is 16mmols. 16 mmols! Over twice as high as he wants to be.

What the heck? We check his insulin history, and we haven’t forgotten to give him some for dinner. Damn.

We are up three times that night battling him down. Giving more insulin twice, and socking a high temp basal on… By morning he’s in better shape though still too high, 10mmols. Something was pushing his levels up such that they did not want to be brought down quickly.

Honestly. Why? We don’t know. This is the thing. We actually don’t know.

Two possibilities: he has a cold. But it had already come out, and his sugars had been fine. Probably not that.

The other possibility relates to what happened yesterday: one hour after eating a Penguin biscuit and bolusing for it, he’s again 16mmols. WHAT?!

The night we chased him down, he’d also had a Penguin, some time after dinner.

All we can think is that somehow the Penguin is a bit nasty for his blood sugar, even if he doses properly for it. He does love them and often has them with lunch. We’ve never noticed this happening before, but both recent situations are unusual: one was during a dual wave for pasta, so the Penguin would have entered his blood stream in near isolation, not tempered by other food. (It’s also always possible that the pasta dose was not quite right. It’s one of the doses we do mostly by eye.) Last evening, the Penguin was in complete isolation, and we tested an hour after because it was time to eat dinner. Otherwise we never would have discovered the huge spike, because he doesn’t normally test until at least two hours after he eats.

In any case now one of his favourite things is off the menu. Just a chocolate biscuit. But it’s a high price to pay for a snack. He was very upset at having such a spike, so has decided not to have them. It’s the down side of wanting good numbers: guilt and distress at ‘bad’ numbers.

I shake my fist heavenward. Why must everything be fraught with implications and consequences, every single damn choice?! Argh.

Upon arriving home, we knew for sure that Cleo was expecting. She is round. Eating like a horse. And there are kittens in there! Moving around like crazy.

She is due sometime after 21 August (three days). We are in a bit of a lather.

First time grandmother, I have taken to it with typical obsession. She has not one, but three firm ‘nest’ alternatives now. Which have been alternately lined with towels, fleece and now finally newspaper in the last week. She has not so far chosen any of them. I pray her eventual stopping place will not be a) under a double bed or b) on a window sill, which to be honest has been her favoured place these last ten days. A windowsill! Imagine this. Or not.

Establishing nests for her also seems to have led me into my own nest building: I have been (again rather obsessively) clearing out cupboards and wardrobes. It’s a case of serious overdrive. You could be forgiven for thinking we were getting ready to either move or adopt a child. We have so far filled about ten black bags with STUFF. Only two more sets of clothes and two more chests of drawers to go, and then we will have been through all storage items in the house. Preparing for babies, moi?!

OH says that daughter M would do best to be at some distance when she falls pregnant (one hopes, years from now!). I think he may be right. Meanwhile, I am trying to catch languishing Cleo long enough to trim around her teats (yes, she says defensively, this is actually done, we are informed by the breeder!) so that the kittens (kittens! kittens!) can find their milk…

Sigh.

Cleo looking altogether more relaxed than I feel!

***

On other fronts, we did have an absolutely wonderful time: we read and swam, read and swam. But also saw a number of deep South of France cities we hadn’t before: Avignon, Orange, Arles. Of these, Arles was stupendous. The kind of working, ancient town — with a few Roman remains thrown in — that you’d just like to get inside of. This is what I love about imbedded history: yes, there are tickets to buy and audio books to listen to. Yes there are tourists. Of a sort. But the life of the city just carries on around it. People drive around the Roman amphitheatre, walk through it on the way to work. It’s incredible. And heartening. We also went back to Uzes and the Pont du Gard, two favourite spots which lived up to our memories of them. Stunning, Provencal, and somehow liberating.

ANYWAY.

Number wise things were just fabulous: after the first couple of days of temp basals, E’s insulin levels seemed to settle rather miraculously. We began not to put him on any temps, he hardly had any lows, played in the pool a great deal, walked a great deal… And, you guessed it, GREW like a beanpole. By the end of the holiday we realised his needs had gone up overall, which is why all the exercise etc had not sent him crashing over and over.

And you guessed it: on the way back in the car, his numbers began to soar. Where they stayed, enduring the battle of the 200% temp plus corrections, for about 4 days. Like a plant, with a little sun and water, he had shot up. Had he been less active, we would have had to increase his insulin by about 30%. As it was, we had to do it when we got back.

We figure he grew about an inch in that two weeks. No kidding. He came downstairs the morning after our return saying his eyes were at a different level in the mirror! My lord!

No wonder we have been running to keep up.

So OH and I have not had an unbroken night in four weeks now. We are still trying to get night basals right — he keeps being 12-14 mmols at 2 or 3 am, which is sort of incredible. We then correct him and he’s usually (but not always) okay in the morning. Clearly he’s doing all his growing at night! This morning he was 2.9mmols however, too low, so it’s just that middle of the night window that needs looking at again. We’ve already raised it by two increments since our return.

Oh well. We will get there. Until something else changes.

We’ve also had to change his insulin sensitivity on the pump, or his correction ratio (eg how many mmols can one unit of insulin be expected to lower him?). It used to be 1 unit insulin to 4 mmols in the daytime (high, but he’s quite sensitive), and 1 unit to 5 mmols in the nighttime. For the first four days back at home, we kept finding corrections less effective, lowering him only a little. After setting the basals on 110-120% temp all day and night, and still corrections were not doing it, we figured it wasn’t just a question of basal adjustment. We therefore changed his correction ratio to 1:3mmols for the day, and 1:4mmols for the night. The nighttime one still seems hit and miss (eg didn’t bring him down from bedtime to 2am, and brought him down too much this morning) — but we’ll have to tackle this again through basal rates, as I say…

Endless.

But he’s  three inches taller than me now. Since Christmas. He looks like a tall person in a queue of people. He is beginning to measure up to his father. Which is some good growing, type 1 diabetes aside. Yay!

***

And I haven’t even mentioned daughter M. Who grew like a plant as well, and was the only one in the family who turned the colour of a nut effortlessly and has French style, with scarves and tank tops and gladiator sandals and sunglasses, like nothing I’ve ever seen. Who is only now four inches shorter than me. Who will pass me in height in oh, two years or less. And I will be the short, comparatively squat one in the family. It’s alarming. Really wild. I always thought I was tall. 5’7″ is pretty tall for a woman. Isn’t it? Isn’t it?!

But I’m surrounded by lean, soaring, willowy folks. Of whom I’m so proud. Sniff.

Cleo, E and M. Must be something in the water.

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!

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.

It continues to be all-go in our household. There are times when I feel like a drill sergeant. Sigh. And I’m sure my family would say the same (!).

However. Good news from last week’s clinic appointment is that E’s HbA1c is once again back down to below 7%. This is approaching the high end of ‘normal’ (I love this word – NOT. It means here the high end of a non-diabetic person’s HbA1c). SO this is all good news, and confirms our suspicions that the vast majority of the blip last time was down to the dodgy sets, the missed boluses, and some plain wacky numbers. Two weeks later and those blips have disappeared more into his ‘blood history’, the measurement is 50% from the last month, and the proof is in the pudding. As it were.

It’s a wonderful clinic. Sensors for the CGM are arriving tomorrow, thanks to their help. The doctors and DSNs are open, kind, congratulatory, and we always come away having learned something — or at least with something to think about. This is incredibly rare nowadays for us: diabetes is such an individual condition, that what works for one may not work for another, and the pattern of x may not be the pattern of y. Not to speak of how things can vary day to day. So a new thought is, unfortunately, not usually one we haven’t already thought of. Nevertheless, in this clinic (our pump one, not local) we come away with food for thought. For instance: one of the doctors picked up what might be a pattern: E tends to have a hypo (below 4mmols), about 8 hours after changing to a new infusion set.

This may be nothing. But it may be something. What we would do about it is place him on a slightly lower rate of 95% of his insulin for that time. Maybe it will work? One of the lows was a severe low — the ol’ favourite, 1.8mmols of ten days ago. Ack. Each time, we count our blessings that he seems to weather these well. I am touching wood like mad for luck, but so far even these lows have not caused him to lose consciousness, fit or even become particularly disoriented. As I say, I realise we have been lucky.

And speaking of temp basals, it’s been ‘low insulin’ city in our neck of the woods the last two weekends. E is keen to earn money, so has been doing a lot of gardening work: sweeping the drive, weeding, hauling cut down branches to the bonfire. Etc. Last weekend he went onto a 50% temp basal to try to account for the exercise, and still had four or five hypos (I know, I know)… This weekend we tried a different approach. On Saturday, a shedload of hypos. One after the other. We reduced him to 0% for at least half the day. By evening he was stable again, though on 95% through the night, again to account for the exercise.

On Sunday however, we whacked on a low temp basal (20%) AND under-carbed his food. For instance: scampi and potatoes plus veg weighed out and added up to about 80g CHO. He bolused for 60g, thus receiving about 75% of his ‘usual’ dose.

Interestingly, this seemed to work (aside from two hypos in the morning, before we cottoned onto this new idea, sigh!), combined with the temp basal. We did the same for the evening meal — risotto, a slightly awkward one, that he normally doses at 25/75% (eg 25% up front, 75% spread out) over 7 hours. Again, no hypo.

What’s been useful to think through is that it makes a kind of sense that if the body is sensitive to insulin generally at a certain time, then it will also be sensitive in all instances: so any insulin going in during a sensitive time is bound to lower the blood sugar more than is desirable — whether it’s a ‘long-acting’ basal insulin, or a ‘short-acting’ bolus one.

This is not something anyone has ever mentioned to us. I’m mentioning it here, and will do so on the forum. But it makes sense, and worked.

Will it work the next time, however?! Ah, who knows….

***

The reason we have been so happy to let E work like a dog (and yes, I have a list for him after school this week!), is that we have about 30 people for dinner on Thursday. Eek. Spare a thought. The GREAT news is that the weather looks very promising: hot and sunny. (And DON’T even mention the possibility of a thunderstorm to break it, as is the tendency is this part of the country! Just keep it to yourself. Touch wood….)

Last year at the same party E had been on the pump for less than a month. We had lentils. And it sent his numbers all over the shop, being low GI. That would be very unlikely to happen this time. Incredible the distance you travel. We have travelled.

Touch wood.

copyright Tim Haynes

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.

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.