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It’s been a shock to go from my peaceful mornings at the hut to a life punctuated by the fast train from Kent to St Pancras, but so it has been: external examining at Norwich University College of the Arts for three days, home examining at my own, then to York for a NAWE meeting, then three more days examining at my own institution again.

Ack. Meanwhile the sun has mostly shone, despite the cool wind. Like life of course. Mostly sunny, a more or less constant cold wind. That you just learn to get used to.

Three items for report (how many meeting have I been in the last ten days, you ask?!):

1) desperate cat Cleo is going on a singles’ holiday this weekend. Eg we hope for kittens in late August! Watch this space. The relief will be mutual, to be blunt. The poor girl spends some of every evening trying to settle in the bathroom, with bed, tray and food. Poor thing. Poor us. At its worst, we can’t hear ourselves speak. And her brother hisses at her all the time… Bring on some peace (and for her, satisfaction?!).

2) the Tooth Fairy has only just recovered from being in deep doo doos in our house. Not one, but two teeth languished under daughter M’s pillow. For a WEEK! I know, someone shoot that fairy. But the worst of it has been M’s eventual understanding, once the glowering passed. I know the tooth fairy has been very busy, she says. Eek, I can’t stand the guilt! Anyway, now the teeth are in the fairy’s castle, and M has not only £2, but a rather glittery bracelet (hopefully not made out of teeth…).

3) E’s numbers have been generally better. Again, some weird and wonderful nights: a drop from 8mmols to 1.8mmols once (yikes!), and another of a random rise… But these weirdnesses aside, things have eased. We are off to clinic for CGM instruction today. Another matter for report….!

***

Finally, at the gym yesterday (for the first time in two weeks…really, thank goodness the place doesn’t have cameras. I don’t think it does, anyway…), I encountered one of my favourite songs of the moment, by Jolie Holland. She is, if anyone is still around from my other blog, one of my favourite artists, but this song…I don’t know. I listened and thought you know, life is random. Life is harrying and harried. And is all about risk, about doing what you don’t and can’t know. And sometimes it works out, and sometimes it doesn’t. On Jolie Holland’s website, it says this about the song:

“Palmyra” is a prayer for the broken-hearted and traumatized, both individuals and communities. The first half paints a picture a love-lorn traveler pulling herself back together after a disastrous affair. The second half is lovingly and respectfully dedicated to the hard-pressed people of New Orleans’ Ninth Ward, hallowed estuary of some of the finest music the world has ever witnessed.

(But the real place to check her out is probably her myspace page, in which I have just spent several happy minutes…)

For me, the song’s somehow about strength. My OH and I met over 25 years ago. We married 22 years ago a week from tomorrow. He is my soul mate and best friend. And one of the very few people in my life that I haven’t had to leave for some reason, whom I haven’t left and hasn’t left me. A gift in my life I never really thought my life would hold or be able to hold. How very very lucky and blessed we are in this way. Just wanted to say that. He got the album this song comes from for me. He’s not mad on the music, but knows that I am, and lets me dance and sing to it in the kitchen. Even while he’s making dinner. What a guy.

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1) Never happens. We know this. You know this. We plug on though. After 10 days/2 weeks of strangely low numbers, we finally lowered insulin across the board. As said. And things a little too high. Tweaked. Things still a little too high. Then, yesterday, things just TOO HIGH: 14mmols +. Eek. Went straight onto 120% temp basal, to get more insulin in. By 10.30pm had crashed into a bad feeling hypo (worse of course by virtue of having been a little high for a few days). Another panicky one. Yuck. Removed temp. At 2am was 4.9 mmols. Woke on 4.6 mmols. That’s better. Back to no temp.

Sigh. We’ll see what today brings.

2) Two days ago there was a talk on ‘healthy eating’ at daughter M’s school. During which diabetes was mentioned as a consequence of not eating well.

Oh dear. M then finds herself, not for the first time, defending her brother’s basic health in the face of her peers over the lunch table, who could add to their usual your brother can’t have sweets/ate too many sweets/must be fat, the cry of but teacher said so.

So no one believed her. And she was so cross she was stomping her foot about it when she got home.

So. I went in yesterday and chatted to form teacher. Was, rather incredibly, rung by the school nurse later in the day. Yes she said we will address this. Distinction not made clear and not good for children, not good for M.

Could have knocked me over with a feather, but oh well.

The two year groups who were originally spoken to will be kept back after assembly this morning, and things clarified. Upon arrival at school M was offered the chance to not sit in with them, or to sit in. She chose to sit in.

She is fearful that there will be too much M’s brother, M’s sensitivity etc for her liking and everyone will know it’s about her…

But I tell her, we tell her, that getting some things right are worth it. She feels so strongly about it, so fiercely proud of her brother and so deeply understands that him developing diabetes is just PLAIN BAD LUCK.

She yelled this in the car yesterday: it’s just plain bad luck!

If everyone knows it’s her doing — so what? They will also know that they were wrong. She just needs to be brave. And she’s very capable of that, every bit as brave and strong as the brother she loves so much.

Okay, so after that massive low (which, btw, in case anyone is wondering, can actually do damage… This is not just parents’ hysteria here — oh my baby, etc. Severe hypos can impair function. Long term. Them apples indeed)….ANYWAY.

After that massive low, E as predicted did fight lows all day, having two mild and one rather worse (2.9) hypo. We reduced the insulin overnight, knowing full well he probably would be high because maybe the massive low was a one-off — and it was. He was high in the morning.

Last night we back-tracked on the insulin, raising it again, and he was slightly low at 2am. Woke him up for some juice. Woke in range at 6.30am. Phew!

***

Honestly. I am SO tired. The last two mornings I’ve texted OH to ask if he is CERTAIN we had coffee with caffeine, as opposed to decaff, in the morning. He claims yes. But I could close my eyes RIGHT NOW and sleep.

It is not to be. Life says that I’ve marked and consulted about marks all day. I’ve seen two students, both chasing me for references. Eek. (One by-product of all this is that I now quite often think I’ve done something when I haven’t. Or is this just age? Hmmm…)

I’m home now, having handed the Reading Series reins over for the night to two more very helpful graduate students. Because I’m due out to dinner later. With a VIC (Very Important Composer). Which means that OH cannot do the child-runaround that he normally does, occupied as he is with keeping the VIC company.

So. I will head out at 5.30pm to get daughter, who is busy in the BEST after school club on earth: her (yes, just her!) and her Design Technology teacher, making props. Mum, she says, I got to use a drill! We spray painted outside without masks! Mrs F walks around the studio in her stockinged feet! 

Hallelujah. Good on Mrs F, I say. Daughter is in hog heaven.

Except that this club is only one term long. So she still needs to go to ballet (which she refuses to give up) that starts right after. She changes at school, and snarfs a snack in the car.

THEN home to make them dinner. Then out to dinner myself. Any ideas on what to wear warmly welcomed…

***

Tonight E will babysit daughter M for the first time, properly. Two ish hours. Another thing the big D called diabetes has done is slow down his progression toward independence. What if he has a hypo? Will M know what to do? Will he? Is that all just too much to ask?

No, it’s not. He’s the most responsible young man in the world. She is alert. They love each other. He is desperate to become a babysitter. He’s a good lad.

So we will go out.

Just in case you’re wondering, he’s had one hypo today. And exercised, and put a temp basal (lowered insulin) on a bit late. But he’ll be fine. We are ten minutes away.

And life is all about small steps.

A synced life: I think. My Christmas present this year from OH was an iPhone on Vodafone — OH made me teeny-weeny little flip calendar, tied with silver thread (awww!) counting down the days from Christmas. One inch square. So yesterday is the day it’s available, and off I go. Collect. Bring home. Stare at it. Plug it in and watch it go like some kind of information eating monster…all my photos, all my albums, in minutes. Now I can look at pictures of my children taken 4 years ago — on my phone! Ack. Now too, I have to figure out how to ‘push’ my email onto it (erk), work a calendar that syncs the computer and the phone without  you even prompting it (ack), and enter all my contacts (thank goodness for touch typing). THEN my whole life will be streamlined. (Cough.)

An artificial pancreas: this really is BIG news. Received word yesterday of a recent announcement — the first prototypes are expected to be available in the US within four years. Four years. Read the press release. I like this short article. Because it makes clear what the heck living with this is all about. And what a difference even half the job of a pancreas (preventing highs and lows) would make, the impact on every minute of every day…

***

Random case in point: YESTERDAY

Daughter M has a ballet performance (soldier in a version of the Nutcracker) in the evening. I tear home from school with her and friend, have a 45 minute turnaround for dinner. Earlier decided on pizza — hard for E to dose the insulin (pizza, pasta and rice in particular take longer to digest so getting the insulin in at the right speed to ‘catch’ the food and metabolise it is challenging to say the least — see Diabetes Basics for an explanation of the mechanics!), but needs must.

Pizza packaging is confusing: says 25g of carbohydrate per 100g of pizza…but then says that half a pizza is 60g of carb. We weigh up his serving: 200g. But is it more than half the pizza! So per 100g measurement says it’s 50g of carb for him, whereas written amount says it’s more like 70g…These disparities in numbers make the difference between E’s blood sugar going too low, or shooting too high. Since he has to go to the performance, we decide to allow some leeway to avoid a hypo in the middle of it all — we go for 50g. Then the decision about how to measure out the insulin… There is a facility on the pump for spreading out a dose of insulin over time, in order to avoid dumping it all in when the slower-digesting food is not there to receive it (this facility is called a dual wave on the Medtronic pump). Thing is, you have to decide what kind of dual wave to do, and for how long: you have to ask the questions how much insulin should he have NOW (to go in over the next two hours) and how much should he have LATER than that (to go in over anywhere from 1 more to 8 more hours….). Okay, so we know from experience with pizza than Sainsbury’s brand usually works pretty well on a 50/50 (50% now, 50% later) 2 hour dual wave. BUT because I got the pizza from Marks and Spencer (because I was in town getting my iPhone!), we have a different base, and we can see a less cheesy, less oily pizza (fats also slow down food absorption). SO, we make a more or less random choice to make the dual wave a 1 hour 50/50 one, thinking it will go in a bit quicker than usual.

Stay with me!

So, we slam the food in, by now quite late, M changes and I whack her hair into a low bun, slick her face with a curly black moustache and round red cheeks. Meanwhile E has left the crusts of the pizza — aaaah! He’s full. Is this okay? we wonder. Will he hypo later? He’s left some of the carb we have already counted, you see, in case you’re drifting…We decide that we’ve probably under-estimated the carb content anyway because of the packaging mix-up, and leave it.

Meanwhile, M is readying herself for a performance. I feel sick with guilt and stress that this nine year old has gathered her own ballet shoes, a book to read, and her toy rifle to take with her, while I’m trying to contribute to a unanimous decision about dosing and carb content.

She gets there. We take our seats. She does an excellent job, and the whole production is great fun, lots of good dancing, lots of dramatic pretend fighting.

At the interval E is very grumpy. I think he’s high, though he rolls his eyes at me. He tests, and is high. However, the dual wave has not finished having its effect, and from experience we know that if we override the pump and try to correct him now (eg give more insulin), there is a high chance he will hypo later.

So we leave it. He doesn’t feel great, and is sulky-ish. (My point is, here the artificial pancreas would know without him testing, and correct him! He would not still be climbing!)

The performance reaches a resounding climax, and we all go home happy.

At home though, E feels worse. He’s a bit higher. Damn pizza.

M wants to recount the performance…wait, we say, having to interrupt her. We need to look at E’s numbers. Damn diabetes.

She stops talking. We make the decision to correct. It’s 9.15pm. This decision means that we will need to stay up until 11.45 at least — in order to ‘check’ the dosing. As a couple, we have made the decision not to let him go through the night without checking him at a point where his levels may have stabilised, and this always applies to an insulin dose, which takes 2.5 to 3 hrs to complete its cycle. This commitment to seeing every dose and change through has saved numerous potentially dangerous situations: we have ‘caught’ many dangerously low lows by doing this. We have also corrected many out of range and long-term dangerous highs similarly….

We ask M to go ahead, and we all finally get the chance to talk about the night.

So. E’s numbers will come down, M has had a good night (though as ever mediated by diabetes), and OH and I know we will be up much later than we want to be in order for this all to have happened.

***

In the night: at 11.45 pm we do a blood test on him while he sleeps, as usual. He is borderline low. Damn pizza. Damn correction of insulin earlier. We cannot leave him in this state because

1) the insulin still has another hour of activity, so he is likely to go lower

2) he is on new nighttime insulin rates (changed by us yesterday because he’s been rising overnight), and therefore his levels are even more unpredictable than usual. So we wake him enough to drink some apple juice — about 10g of carbohydrate. We calculate that this should be enough to hold him through the night. It’s a guess, of course, because of the new rates.

We decide too that we can’t leave him all night without testing: the new rates, the starting the night low. It’s my turn to get up (we’ve had a bad stretch, been up almost every night since Christmas), and I set the alarm for 2am.

At 1.30 am I hear the finger pricker clicking and shoot out of bed. He has woken up, feeling bad. He is again borderline low. He has some more juice and then falls asleep instantly. 

I go back to bed, and wonder if he’s had enough juice, and whether the rates need changing again. The night before had been convincing, we had thought everything was okay…

(Again, an artificial pancreas, even the basic one in the article, would have caught these slipping lows and prevented them! He would have slept through! We would have got some sleep!)

This morning — again, he is borderline low and feeling unwell. Something clearly needs looking at in his rates, just 48 hours after the last adjustments.

***

Four years in the States probably translates to six years until it’s available here. But for him, that’s partway through University. That’s entering his adult life. That’s great! Give it to us! We’ll fight for it! We’ll campaign for it! Safe and healthy nights in his independent life — bring them on.

 

 

This is not a New Year’s resolution. You’d think it would be, but it’s not. At least I don’t recognise it. My resolutions, such as they are, tend to drift, tend to wind out of reach and out of sight before I’ve caught up with them, or grabbed them. They are ghostly, and are quickly swallowed by regret.

This, however. Well. What happened is I woke up four mornings ago and thought It is time. Coincidentally, it was New Year’s Eve.

It’s taken nine months to give birth to this place, since the last entry over on Schroedinger’s Cat

That was then, this is now. What has happened in the meanwhile is the gradual glimpsing of a shoreline.

***

Because having something chronic and unusual happen to your family is like being thrown out of the boat. I feel that so strongly I’ve put that in my sidebar, so it stays there forever. You are out of mainstream, out of the flow, without social direction or definition. The only thing you know and that anyone else knows about you and what happened, for a long time, is that you (and your family) are suddenly not like everyone else. And never will be.

***

I have never considered myself normal. It has never occurred to me that I wish to be normal, or to be in any way like anyone else. Indeed, more times than I can count I have gone out of my way to be abnormal, to be what seemed to be different — in dress, in attitude, in art. Etc. I have never had a problem rowing the other way.

However. With a diagnosis of a chronic illness in the family — and especially one requiring such relentless attention as type 1 diabetes — every moment of every day marks you and your family out as different. This differentness is largely invisible. But you ignore it at your peril. Literally.

And how I long now for a day of that old normality.  I didn’t know we were ‘normal’, but we were.

***

In the last few months my daughter, now nine, has taken to saying after something surprising happens (a trip, a slip, a head bash), ‘I’m…O-KAY!’, holding her hand up in the time-honoured index finger and thumb circle. This comes from one of her old favourite films, A Bug’s Life. It’s what Flick, the main character, says after slamming into a rock cliffside and dropping out of sight. ‘Are you alright?’ he’s asked. There’s a pause, and you see his face struggle into view…. ‘I’m…O-Kay!’ comes the shaken but cheerful response.

Indeed. We are okay now, more or less. 

p.s. There will be lots more on the whats whys and wherefores of type 1 diabetes, and probably everything else in the whole darn world…but I’m holding back the flood here. Stick with me and it will all come in gentle swells. I hope.

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.