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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.

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

So after two nights of VERY stable numbers, we decide that 7.7 mmols at midnight is good going, and we will try for another unbroken night.

Forgetting the significant amount of cheese with dinner: goats, Swiss and cheddar, all hot on toast with salad. Yum.

So this morning: 15.7 mmols! Cripes!

E stays home while we battle him down- have to make sure it’s not a faulty set. By 10 am he’s down to 12 mmols and we set off to school.

I’m due to teach in 30 mins. I’m going to the supermarket to get juice and biscuits for my last class.

The traffic is slow. You ok? E says.

Yes, I say. Just HATE FLIPPING DIABETES! I yell this, no doubt looking crazed.

We swing round the roundabout.

Lol, he says. Dryly.

***

Got to love him.

Cheese has a high fat content and can slow down digestion. So there is no insulin left to deal with the late carb from the toast. He HAD gone hypo very early into the dose. The clue we ignored. Insulin missed the meal completely, and he was high for hours after.

Lol.

Sigh.
– Posted using tBlogPress from my iPhone

…anyone thought that life with diabetes was anything less or more than consistently inconsistent, last night things stayed weird and also got weirder.

6.8mmols at 10.30pm. Too low given last few nights. So, a whole piece of bread and some cheese — 15g carb, quite a lot — which we did not give insulin for. We actually anticipated a high reading this morning with that…

Woke on 3.6mmols. Half a carton of juice.

Sigh.

No, we did not get up in the night. He, for once, just couldn’t handle it. He is exhausted from his nightly 4 hour performances, and needs sleep desperately.

Not to speak of us too.

However. We will get up tonight to see if we can find out at which point the drop is happening. Traditionally any change with E seems to take place before 2am. If it is happening after this time, this is truly a different turn of events.

We will get up and test, and treat accordingly.

Latest theory: he is eating dinner very early in order to get out the door for the performance. He is also then sort of burning it all off, playing in the performance (though it’s only a little physical, really, blowing in a reed! Brain activity?).

So we now wonder if somehow this is all adding up, bringing him lower than usual, with no food at all knocking around, and high levels of concentration for the performance…?

If tonight shows this again, we will use a low temp basal function (eg lower his insulin over the course of the whole night) rather than actually change what has been a very stable basal pattern for him overnight… Until the performances are over, and then see where we are… If indeed we can even see the wood for the trees.

***

GCSE went very well apparently. I spent half of yesterday morning berating myself for not having clarified with the invigilator E’s procedures for hypos etc…Fortunately, not necessary.

***

I need to do a Life 101 post. Too much diabetes! Too much diabetes! Pah to diabetes!

Well, as if I needed reminding how important feeling ‘connected’ is to us now, in this day and age, and with all this happening all the time, there has been a pretty hilarious/awful series of events which have unraveled us…

1) internet at home STOPS working last Monday. Apparently new stuff coming day after tomorrow. This means: * no Facebooking or podcasts for E * no forum-checking or surfing for me * no idea what the weather is for any of us * no access to email except through teeny-tiny iPhone keyboards, where only the most rudimentary messages can be tackled without a headache and a nervous breakdown * no Moshi Monsters for daughter M * no cuteoverload for same * no TV license renewal

2) last week was half term. Which meant: * children home every day * not being able to go into work as much as usual, even though internet not working at home * therefore falling behind with work business * more running around dropping children at friends and in town * and therefore even less work done

3) thousands of words of marking need arbitrating. Which means: *unexpected hours of reading * extra reports need writing *even though there is no internet access at home * the children are on half term * and I can’t do as much work in a week as I normally would

4) we have forgotten to renew not only the TV license, but the CAR TAX as well. Which means: *because it is more than a month overdue, we can’t do it online, so must bring in a logbook to the local post office *only we can’t find the most recent logbook, only an older one * therefore we have to go to a town which is 40 minutes away to request a log book *and then request a tax disc *and I have to do this today because OH is in a meeting all day *only the car is not in my name *so he has to write a note * and we have to hope it will be accepted *even though we were told it WOULD be accepted *by the man on the phone at 8am this morning.

5) I couldn’t get a hair appointment until Friday. Which means: *I look my age *which upsets me because I normally don’t *and depend on people gasping and practically squeaking out but you don’t look it! when I tell them I am *45 * almost 46.

***
I feel so much better having written all that! Thank you for listening.

The good news is that aside from the last couple of days when E has been inexplicably too high (and pasta seems again to be causing us a problem, alas), numbers have been good generally. Nights are doing something funny so we are up with the 3am club at the moment, but again, from then until 7am, he is as solid as a rock. Long may it last.

More reassuring news is that his annual review went well. Consultant, dietician, diabetes nurse, eye examiner and person who took gallons of his blood (ewww), delighted with him. Fatty lumps appearing on his tummy from overuse of one area, which may be inhibiting some insulin absorption, but we will slowly tackle this. It’s hard to manage something new. It’s important to feel safe, rather than always at risk, on the edge, as a change of site for the pump feels. But we will work on it.

Also potentially good or at least different news is coming home with the new Roche Mobile meter. It has a tape inside it which serves as the testing strips, and rotates with each use, so you just dab the blood on. No more foil! No tubes of strips! Also, the lancet drum has six lancets in it, and can be attached to the side of the meter, so it’s really quite compact. The clinical waste is nil. Which is a great relief, because if used lancets and foil packets from test strips were breadcrumbs — our birds would be very fat. We find them EVERYWHERE, dropping out of E’s pockets, shaken out of his bed, his bag, the sofa, our cupboards…Now no more!

Two disadvantages to the meter thus far: it is quite noisy. The rotating of the test tape is mechanical, and it does so every time you open it for a new test. It sounds like an old digital camera being powered on. The finger pricker priming is also quite loud, though the thing itself is more solid than the Optium Exceed we’ve been using. The noise may bother E in time, especially in some locations or at school. But so far not having to balance the thing on his knee or someone’s back while he tears open foil and places a lancet in and out of the pricker, is winning.

Second disadvantage: not entirely dependable. There are times when it seems like there is enough blood on the tape, but then it throws an error message that there isn’t. You then need to close the tape place, wait a second, and re-open it, making sure it’s rotated. The stuff that is testing tape and the stuff that isn’t are the same colour, unfortunately. And we have already several times dabbed blood on tape which isn’t actually test tape, causing real frustration, because then you have to start over AGAIN.

Saying all this, it’s a promising thing. The problems with the dependability will either get better with use and understanding of the particularities — or get more bothersome, which will mean we give up on it. But so far so better.

Sorry for the going on, folks…And yes, I’m using some work time for this, because THERE IS NO INTERNET AT HOME!

After seemingly solving high night time blood sugars through a tiny raising of insulin, over the last two nights we’ve had to steadily drop it down again. Sigh. He woke up one morning VERY low…We’ve been lucky that he’s never been so low as to be unconscious or not able to look after himself…but some people with diabetes, when they encounter numbers as low as he has had, find themselves unconsciousness, or worse.

SO. We had two nights of unbroken sleep (the first since Christmas), but are now back on the treadmill of night testing. Things are just too unpredictable at the moment.

***

All that aside (yay!), meanwhile two more furry creatures have entered our lives. Meet Mimi:

and

Peaches:

They are very gorgeous, good fun, cuddly, and make a pretty hilarious soundtrack, with their squeaks and boinks…

This is the first time we have ever had guinea pigs, and they arrive after three years of soulful longing by daughter M, who had reached the point of weeping when we left pet shops, and railing against all who keep pets and don’t take care of them, because she would do so much better a job and REALLY love them…This is all true, of course. Love them she does, taking full responsibility for feeding and cuddles.

The cats of course are bemused: what could possibly lie behind that closed door? Obviously, we aren’t letting  them in there yet. If ever. Schubert has caught an astonishing array of beasties in the garden over the last couple of years — countless voles, mice, a snake, three birds, two rabbits….I know, I know. It’s a bit much. So we are being wary, to say the least. Last night I had to get up and put a suitcase in front of the door, they were scratching at it so much. It’s cat-night-fun as much as anything, I’m sure…

***

Also in this category was a happy gym morning yesterday: this time another song from E’s playlist, and one that is so bouncy  and postivie that I never do anything but smile when I hear it. I realise now that the ups and downs of all this often bear little relation to the ups and downs of blood sugar numbers. They are as much if not more to do my own relative fragility. Anyway, the song. Peace and love man…

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.