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Last weekend E had a chamber choir concert in a nearby village. He’d been dropped off early for rehearsal (downing a sandwich and milk before leaving), and I rolled up to hear the concert two hours later.
As soon as I arrive, he strolls over, a bit of a sheepish grin. Well it’s like this Mum. I’ve just eaten four sandwiches that I thought were equal to a piece of bread each, but then I realised that each was equal to half a piece. So… I think I need some free carb, yes? Big smile.
Oh my. The concert is starting in fewer than 5 mins. My brain goes into a kind of panic, and I can’t do my sums for the LIFE of me. Let’s see, one piece of bread is 15 g carb, which is what he bolused for. Four times. So he bolused for 60 g of carb.
So… I literally cannot think. In the end of course he works it out (typical!), and I confirm: he should have bolused for more like 30g of carb. So he had taken TWICE as much insulin as he should have.
Oops.
People are sitting down and getting ready. He has two juices on him (equalling 40 g carb), but I also have a pack of fruit pastilles. Unfortunately due to my fuzzy brain I am unsure a) how many fruit pastilles are in a pack and b) quite how much carb each is. OH WELL.
I am able to reason though that if he needs it desperately, the juice will work faster, so it should be saved for an actual hypo just in case. I therefore throw the fruit pastilles at him and tell him to eat the whole thing right away. I manage to catch both conductors and let them know what’s happened. Fortunately they are the same great teachers who took him on a choir tour to the Isle of Wight last autumn, so they know what’s what. Phew. Once I sit down I am able to calculate that if each fruit pastille is roughly 4 g each, and there are 10 or so in the pack, he should be fine. Phew.
My phone vibrates: Text me if I look low.
Eek.
So the concert starts. It sounds brilliant, lots of complicated and quite thrilling choral music. I watch him like a hawk. He makes it.
He tests at the interval: 8.6mmols. Decent, but it feels low for partway through a dose AND one propped up by a whack of sugar, which will go through fast. I steal a biscuit and get it to him, thus sparking the whole entourage of 20 boys to search out more biscuits.
Oops.
He has one more set to get through, and does so. Sits down with the others, tests again and texts me: 10.5 mmols.
Phew.
At home, all remains even. He doesn’t eat anything else, and goes to bed on a decent number. Wakes up on 5.6mmols. Ker-ching!
***
Really not an experience I would choose to have. Of course. But I was so proud of him for noticing his mistake, for addressing it, and for holding it together and putting in a good performance.
The point is: he could have done it himself. He could have managed the whole thing. We were there supporting each other, and it was therefore less stressful — but he could have done it.
OH was not happy not to be there. Understandably. You want to be there through everything.
But E did it. And could have done it without either of us. Maybe a bit more slapdash, but it would have worked.
Only one thing made me throw up my hands: as we leave the concert, one of his friends calls out hey, thanks for the fruit pastilles!
I turn to E. I don’t like the blackcurrant ones, he says. Sheepishly.
Argh!
Spring is springing so hard it’s practically bouncing off the page! The sun has shone almost without interruption now for two weeks. The tiny showers have made all the grass green and the tulips livid with life.
1) Thank you to everyone who sent me messages (see About on this site, but I’m afraid you can’t hack into my email, 🙂 ) about my article in Balance, the Diabetes UK bi-monthly magazine. I do what I do because it presses upon me to do it. Just hearing from people and knowing that somehow we all have places to go, and that I might, might be laying one tiny bridge of connection down for folks — this is good enough for me. This is what it’s all about. Thank you. My column continues in the next issue.
2) The beach hut is the BEST THING since sliced bread. I’m writing a lot. The sun is shining. At the end of the day it goes grey, and the horizon mixes the sea and sky. I’m researching coastal terminology and just plain watching the water, the birds, the dogs being walked, the children playing, and the slow flow of the tide. The whole thing is astonishing. I haven’t felt this connected to writing life-wise in years. Years. (Yay!)
3) Daughter M celebrated her 10th birthday yesterday. Like me, she has a tendency to tell everyone she knows and thereby reap the rewards of good wishes! She was in possession of the Birthday Cushion from her maths teacher all day, which she could sit upon, carry with her, flash at everyone and generally enjoy. Her name was emboldened upon the big screen by the school library. Her class sang to her. She ate cupcakes. Her brother downloaded a wonderful arty hand-drawn puzzle game for her as a gift. She soaked up ‘the love’. She is ten, double digits for the rest of her life. And a cracking, special girl, much adored. Here’s to you, chiquita!
4) We are off to clinic tomorrow, to sort out Manky’s sites. Lordy. We are feeling brave and resolute. As I say, the sun is shining. We have raised the nighttime insulin to combat the growth hormone highs which have persisted pretty much constantly now for three weeks. Perhaps soon we can get a night’s sleep! The sun is shining.
Til when!
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!
Look what happens when school ends and schedules collapse: six days since last entry! Ack!
So I’m now doing the incredibly tacky but somehow thrilling hi tech thing of posting WHILE ON THE ROAD… We are on our way to the Lake District, where we try to go every Easter holiday.
The roads are quite busy and I’ve already been outraged enough to note down a REALLY bad driver’s license plate – but it’s a blue sky and bright sun day.
This time last year we experienced one of the hardest and most stressful weeks of our lives (so far!): almost as soon as we arrived at the Lake house, E’s blood sugar numbers went through the roof. Like, 18,19,20 mmols.
He was on MDI (multiple daily injections). It was a long bank holiday weekend – so no medical support – and all we could do was just POUR insulin into him. At first we followed the rules and upped his doses by one every two days. Four days of this had no effect. He was so high and miserable – emotional, feeling sick, so tired. We spent every moment trying to figure out what to do. Could not go walking ( too high). Could not eat highcarb food or have treats. We had been desperate for a break, and had ended up with even more grief ….
Halfway through the week, we took charge and started taking chances: in a space of two days we doubled his total insulin dose. We made a pact not to speak of diabetes so constantly, or in front of daughter M – who, being a good girl, had been silently bearing up, helpless and unhappy, in the face of it all.
Fortunately our approach worked. E began to come into range, and as he went down so we could go out – I remember a beautiful ramble around Buttermere. Slowly we all recovered.
Of course what we had run up against for the first and typically dramatic time, is the unfair fact that there is no holiday from diabetes.
So that time, the break never came. We were as exhausted when we got home as when we’d left.
However. In our bones we know things are different now. The insulin pump has transformed our and E’s ability to gain control quickly. We understand more about insulin resistance, about the possible effects of growth hormones, of changes in routine, and what may happen as the pancreas’ production of insulin fades and wobbles, splutters. All or none of these things we now know may have played a part in that confusing and scary week.
We set off for this week then with very nearly a song in our hearts -by comparison, anyway. Yes we have been dragged into an education by experience that no one could wish for but plenty undergo. And which is ongoing. Of course.
Yet: the last week numbers have been good. The teeth-gritting stress that comes from feeling like you can’t win for losing is remarkably leaving us be for a while.
Phew. More than anything though, we find ourselves able to lives our lives – for the moment – alongside diabetes. For the moment, the haunting, just out of sight grey ghost has gone quiet, almost – heavens – calm.
See you in a week.
— Post From My iPhone
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
My friend’s son’s diagnosis of course is still at the top of my mind. And I’m struck by something her message to me yesterday said: I know it will be like trying to carry water in my hands.
Indeed.
This seems a particularly apt way of describing the first feelings, like nothing stays with you for long. Like you start off on a walk, with your hands full of the stuff, then you take three steps and they are empty. So you go back and start again.
In our house we use the pedaling a bike slowly uphill metaphor. I think of how the front wheel twists and turns in this situation, how you just about stay on. This is how we feel. Most of the time.
And in another entry, the running for the bus one seemed best: you chase after, then when you finally get on it, you realise you should be on the one way over there, on that road.
***
These are all quite depressing ones, really. There must be some moments of relief. I’m thinking of my friend H here and her son. What to tell them?
What are the moments of your or your friend’s/child’s care like? What images occur to you in the middle of the night, or in the day on your own, or when you think of the people you love? Have the images and metaphors changed over time, or like us, do you have different ones for different times?
I’m just curious. Because I know that thinking through metaphors somehow helps me cope. It helps me express and articulate these complicated sets of feelings as nothing else can. I feel like there I’ve said it. For the moment, anyway!
***
On the home front, after a few days of highs and raised temp basals (more insulin dripping in), we realise that we are back where we started after the last unexplained round of lows. Sigh. Spluttering pancreas, growth spurt, infusion set site? Who knows. Two mornings now of finally waking in target.
What would be the metaphor for this?! Two steps forward, one step back? No, that’s a cliche, and different.
How about following an overgrown path until you reach a sort of clearing. You take a breath, but then realise that the path continues out the other side, and that you must follow it. It’s a bit of a slog, lots of cutting back and hacking through. But you do it. When you arrive a the next clearing, after a few minutes it dawns on you. Yes, it looks familiar. You were here before, only now you’re approaching from another angle.
***
All being well I will update in the next couple of days about the school’s talk with M’s year group, the Bayer Contour USB. And maybe daffodils.
I’ve heard from my friend again, another day on into diagnosis. Her son is coping well (as they do), and the information they are receiving meshes with information I passed to them. Thank goodness.
When I told E about my friend’s son’s diagnosis, he was quiet. He then said, Tell her it gets easier, but it’s never easy.
There you have it.
Waving and Drowning 