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The absolutely LAST thing I have time for tonight is a post…but I feel determined not to let work get on top of me yet again. Especially after meeting Clare H (hello Clare!), a regular reader, in the gym yesterday. I’m thinking: do a post, do a post… And all the best for her daughter C’s move this week to a pump!
ANYWAY. All well here. Some weirdo numbers. Mostly too high. But not thousands. Just a few irritating ones. Pizza dual wave needs changing. Breaded chicken continues to be problematic. And spag bolognese is a pain in the bottom: the normal pasta dual wave is consistently a disaster with this; evidently the fat in the meat slowing things down. So E crashes. Treats hypo. Then hours later goes high.
Argh.
ANYWAY. Another fun one is that using the pump is SO automatic that last night it backfired the opposite way from usual: instead of forgetting to bolus for a meal, E accidentally bolused when he meant to have some free carb (eg without taking insulin to cover the carb content)! Ack. He hadn’t eaten all his meal, so needed to have some free carb to soak up the leftover insulin… Had a cereal bar, and automatically bolused for it. I realised too late, with a kind of weird retrospect, suddenly recalling the buzz from the pump of the dose delivering… an hour after. So in goes TWO boxes of juice (because the extra insulin in the meal still hadn’t been accounted for), and we’re in bed over an hour later than we wanted to be in order to see through this errant dose…
Sigh.
AND — as if life weren’t complicated enough (as ever), Cleo is beginning to pound the floorboards. Which can only mean one thing: the vet was wrong, and the breeder was right — she’s coming into season way before spring.
And Archie is obviously an adolescent. And you know they only want one thing…
Ack.
We’re thinking we’ll put her on the pill for a year or so — what do you think? A bit like when you have babies, it’s hard to stop having kittens…
With that: back to the coal face for me…
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!
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.Â
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.
It’s incredible what you can get excited about. What anyone, let’s face it, can get excited about.
Like, say, blood glucose meters….
Oh yes.
Since diagnosis, E has used the Optium Exceed. A great meter. Good case, all contained. Accurate and quick. Awful flimsy finger pricker though, and TONS of clinical waste in the form of used lancets, little strips with blood on the ends of them, and all that foil from the strips…So, comfortable, easy to use — but has its moments.
You may remember my excitement over picking up the new Accu-Chek Roche Mobile meter in February. Ah, the promise of a new day! No clinical waste, solid finger pricker, no strips or lancets floating about the place.
How I wish that had worked out. Alas — no. It doesn’t work for E. And this is because: a) it’s noisy and b) it throws error messages too often. And once that happens, you have to close the machine, open it again, start the whole process…and by that point the blood is dry on your finger and you’re re-pricking and everything… His theory is that you get ‘one go’ at dabbing the blood onto the strip — and if you miss that one dab, or it’s not quite enough right then — you are stuck. It throws an error and you’re starting over…The thing about the Optium is that you can keep trying to get blood on the little strip end for quite a while before it dries out or times out…And this is useful. Believe me, how I know this…after dozens of bleary-eyed finger pricks at 3am, when I try several times to get the thing to register enough blood and not to have to prick his finger AGAIN.
Sigh.
Which brings me to what we’re waiting for at the moment…A Bayer Contour USB!
This one is sort of exciting for two very clear reasons: 1) I was approached to review it, so feel all flattered (along with Becky over on Instructions Not Included, I might add!) and interested and 2) it has a direct USB link (no cables)Â to download software and readings etc that WORKS ON AN APPLEÂ MAC!
Yes, you heard me right. for the first time ever. This might be our saviour.
As you know, OH enters blood sugars into our spreadsheet every two days or so, with all kinds of other info: exercise, how the insulin was dispensed, at what rates etc… And we get coloured blood sugar numbers, which I replicate on this blog as you know, and which help us to spot patterns…
Well the Bayer Contour USB meter downloads with the same colours! Oh my gosh! It must be karma!
***
Saying that, the damn thing has yet to be actually delivered. They have tried TWICE at 8.30 am, when we are all out delivering children, going to the gym, or heading to work.
I’ve just rung today to try to get it re-delivered to my office tomorrow morning.
So we look forward to it. OH and I are hoping for a lightening of the load. E is more equivocal. He has certain requirements, understandably. And if it’s: a) too bulky b) too loud c) not reliable or d) fiddly — it’s a goner, whatever we think. And quite rightly too I reckon.
Anyway, will keep you informed! At least it’s a new toy.
AND the sun is out. Spring is well on the way.
Â
It’s just been ONE OF THOSE WEEKS. I don’t know what happens: everything lined up like clockwork. You keep going. You do your stuff. Have meetings. Ferry children. Deliver presentations. Teach. Mark.Â
(AND manage to meet with a friend or two — hurray! Though what they thought of this wild-eyed woman sitting across from them, who knows…)
But it’s the dead end of winter, and everywhere you go people are complaining: it’s freezing. The biting cold wind. You’re complaining too: I’m shattered.
The children are complaining: you’re never home! I’m stressed! I’m too tired!Â
Everybody wakes up and goes to bed looking wan.
So I hit Thursday and sort of collapse. Collapse a bit more yesterday. To where I physically ache, can hardly move around the house.Â
Not illness. Just sheer flipping exhaustion.
***
This morning however when I let the cats out, I notice the air has turned. That edge of spring. And like some kind of underground bulb myself, I can begin to feel the lure of the garden, the promised warmth, despite how overgrown and wet and messy it is right now. I see outside the pot at the base of our garden wall suddenly has some colour: of course, I’d forgotten in the grey of the long winter that purple crocuses emerge there, followed in April by the ink-splattered looking leaves of the wild orchid that planted itself there seven years ago. I never move the pot. Never do anything but pluck the old stems out at the very last minute. I daren’t! And am rewarded in time by the appearance of the primeval-seeming leaves…
***
Meanwhile, in the house of blood sugar levels, things are somewhat better. We have two theories for the huge run of lows (in addition to the performance-equals-lots-of-glucose needed theory from the week before!) last week:
1) site change for the infusion set. Greater absorption across the board?
2) pancreas spluttering. There is growing research to show that if there is good blood sugar control in early diagnosis, this can seem to preserve some beta cell (insulin producing) function. We have been lucky with this good control (and received good support early) — and some of the price paid may be an irregular production of said insulin.Â
However you slice it, it’s a game played in hindsight. Sigh. The set changed again on Wednesday, and since then still less insulin has been needed, but not *quite* as less, if that makes sense.
So all the basals are re-set, the insulin lowered across the board…and yesterday E ran slightly high. Of course. In the 8’s and 9’s as opposed to where he is supposed to be, which would be in the 5’s, 6’s and 7’s.
If the same thing happens today, we will tweak down just a tad, and hope this doesn’t send him crashing… It feels a relief however for him not to be having hypo after hypo, and suffering from that kind of wipe-out.
He’s just suffering from the usual pooped-ness now, along with everyone else! Sleeping as I write this…
Waving and Drowning 