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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.

As anyone who moved over from my other blog will know, I am prone to weeping both on the way to the gym (hearing Obama’s acceptance speech, for instance) and while actually in the gym (endorphins, no doubt).

In general — and I’m sure you’ll understand — I have cried more than I have ever cried in my life these last 15 months, since E’s diagnosis. That’s just the fact of it.

However, I don’t cry as much as I used to, or as uncontrollably, or without warning. Which is altogether easier to manage!

However. Again. I do still often — VERY often — feel tearful in the gym. The harder I work, the more I cry.

I always listen to music there. And I almost always listen to playlists that E has put together and put on my iPod (sorry, now iPhone!). These two are from his original playlist, made for me about two months before his diagnosis. And they are this morning’s gym weeps. I almost had to get off the bike.

Mainly because I love his passion for life. And I won’t let all this get the best of me. Just as he hasn’t right from the beginning.

and

(With apologies to Grace Paley…)

Here’s what happens:

1) You know those night lows from my last post? Well, we didn’t change the insulin the next night, because you should not change on just one set of events. Good thing, because it was a ‘chips’ night — the first  in many months. And E went high all night. We battled him down by testing in the night twice.

2) Yesterday morning E woke on a good level. But within an hour had risen 6 more mmols — huh? Well out of range. Due a set change, so did one, thought this might solve things.

3) No such luck. Continued to be in the upper reaches of not-good ALL DAY, despite numerous tests and corrects. We just kept piling in insulin. Is he ill (how do you feel?)? What did he eat (eat anything different?)? Etc. Can ONLY conclude that once again, his insulin needs have shot up. Overnight. By 20%.

It’s true that in the last month he has grown to be a centimeter taller than me. From a centimeter shorter. The boy is eating everything in sight, even cleaning his sister’s unfinished dinner plate, despite cooties!

4) So last night we keep the same high amount of insulin. Get up at 2am to test: and he’s higher than when he went to bed! Argh. Correct with more insulin, and get up again an hour later to make sure he’s going down (otherwise could be sky-high by morning), AND raise the basic insulin of the pump by another increment, all night.

5) This morning, still high but not sky such.

I mean, really. It’s like a dream, only it’s real: watching the bus you want to get on pick up speed, and you are running and running after it. You get on it, only to realise it’s going the wrong direction. So you get off it and run after another one, which of course is just out of reach.

The point is:  you never arrive. You never, ever get there. But if you don’t keep trying, all this lovely food he is eating will not metabolise. He will not grow properly. He will suffer complications, even when quite young. It’s that simple.

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.

 

 

1) We chased E’s blood sugar levels all last night (so little sleep), just to get them into vaguely acceptable range (why so high now? growing we think…) by morning

2) He could not get his insulin pump reconnected after his shower, so a mad dash for a set change (see video! a different make of pump but exactly the same process) in order to get the insulin going again, quick calculation of how much loss of insulin to make up for, a request that he give himself more ALL DAY to try to beat these high numbers… all as he’s trying to rush out the door, text his friends, catch the bus

3) My daughter M and I have waited in some anticipation for the longed-for covering of thick snow which is predicted — and it has not come

On the day when these small things cause a little bit of a low pressure system in our house, my dear photographer friend Nancy Wilson Fulton sends OH and I a huge great wonderful book of all the correspondence between Elizabeth Bishop and Robert Lowell. Oh yes. What a gift.

So I thought it only right and proper that I put Stevie Smith’s poem, from whence this blog twists its name, up on The Poem page. Enjoy!

***

An insulin pump infusion set change:

(p.s. AGAIN. Pages about diabetes basics and a glossary of terms are under construction. I realise some will know all about it, some will not. There’s a heck of a lot of jargon and messin’ with diabetes…I’m sorry if it’s still confusing. It won’t be for long!)

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.