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But we don’t. After thinking the high numbers of the last post were set probs etc, here we are on the third day since the last change and ALL IS WELL. A relief. Stable ish numbers. A night’s sleep….

And lovely Cleo has passed the worst of being on heat. After two nights locked in the bathroom she’s to all of our great reliefs a bit more settled. Phew! No more earplugs, and a bit happier a cat….

Finally, exams: I phoned the school and they suggested 10% extra time to account for E’s lack of concentration. Which he has done.

It’s good to get in the habit of being obvious and up front about all this: hypo or hyper, he can lose at least 15 mins of a test to treating it. Now, he’s a VERY bright boy. He would do ok no matter what. We know this. The school know this.

But he never complains. He gets on with things. He thrives and excels. So when he says he thinks his performance is affected by his diabetes, the school listens. They want to set up similar formal provisions for him for GCSEs. Just to give him the best of all possible worlds.

They believe in him and trust him. I was quite choked up on the phone, hearing how much they thought of him. In his RS public exam the next day (part of a GCSE) his numbers were fine. But arrangements had been made for him to sit close to the door. All of the invigilators knew the situation. He came home saying he felt so much better now that nothing was unknown. Before he had gone into every exam explaining…. Uncomplaining and necessary, but hard work I’m guessing before an exam.

Anyway. For the first time I feel, tentatively, that the school is beginning to understand….

***

Morning at the hut.

– Posted using BlogPress from my iPhone

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!

There are a lot of things this title could mean: I think we might all automatically think of post not being delivered. And with all the flight problems at the moment, there are no doubt countless things that cannot be delivered.

However, this is also the message which has popped up on E’s pump no fewer than FIVE times in the last four days. What this means is what it says: insulin is not getting through.

Fortunately we have so far avoided real disaster. And we are thanking our lucky stars that we didn’t have this circus last week while on holiday.

The main, and I would go so far as to say the only, down side of the pump is that when it malfunctions or something is dicky about it — it really is bad news. When this happens, chances are there is little insulin AT ALL in the body. And those of you who have been paying attention in biology will know that in people with type 1, no insulin spells dangerously high blood sugar levels — very, very quickly.

So far, out of the five problem infusion sets (because that’s what it seems to be, see below), E has only suffered one nasty spell, in which he felt terribly ill, very sick, and had high ketones. This in a matter of several hours, and with a high reading of only 16mmols (considering he was 30mmols when diagnosed, this seems incredible. But it tells you how very important ANY amount of insulin in the body is — because ANY insulin means that SOME glucose can be metabolised, and thus conducted out of the bloodstream, thus continuing this vital cycle. When NO insulin is there to conduct this metabolising, things escalate frighteningly quickly, and at surprisingly moderate blood sugar levels).

This is a point worth making: when blood sugar is 14mmols + and there is is little or no insulin running around in the body, then anything can raise the blood sugar levels further, even things which would lower it with insulin present, eg exercise. This came up the other day when talking to someone about the difficulty of negotiating long walks with E’s type 1. Can’t you just make sure he eats?  was the question. A sensible one, because then the starting blood sugar would be higher, thus in theory reducing the chance of going low on the walk.

Well, sort of. But if the blood sugar is too high without any insulin present, it’s dangerous. Exercise will push it higher. Because the body has no way of bringing it down without insulin there to smooth the way. (For example, see last post: E dropped from 17mmols to 6mmols in 20 minutes with exercise — but that was because he took a correction of insulin. With enough insulin in the body, the blood sugar level can lower.)

But it’s getting the insulin IN which has been problematic of late.

This is not a new problem. We have been bothered by funny sets since the New Year, when E bravely set out to spread his sites around.

We thought, and Medtronic (the makers of the pump) thought that the problems may come from dodgy sets. 

This now appears not to be the case. After a long talk with an incredibly helpful technical rep at Medtronic, we have come to the conclusion that this type of set (Quicksets) may no longer suit E. He is very slim, growing, with very little fat on him.

Insulin needs to go into fat to be absorbed well. But not into the same place over and over, otherwise there’s scarring and lowered absorption. So another can’t win for losing situation, but OH WELL.

The cannula of the set needs to be in a layer of subcutaneous fat, otherwise it may bend. As has happened to us now in two out of the five recent NO DELIVERY messages. It bends when it hits muscle, and no insulin can come out. It also hurts a lot more. It also may not absorb properly, and back up in the tube…and prompt the pump to send a NO DELIVERY message.

Sigh.

So Medtronic have special delivered new sets to try, that go in at 45 degrees and therefore are much more likely to go into a thin layer of fat rather than into muscle (Quicksets go in at 90 degrees, straight through the skin).

We wanted to wait to the weekend to see how the new sets went. E doesn’t like the idea of them. They are new. It’s a whole new thing. And it’s at 45 degrees. He has bad memories of having to inject at 45 degrees because the bruising on his legs was so bad from going into muscle over and over. He had to hold the injection pen at an angle, and it made him feel sick, unstable, to do so — rather than just jabbing it in to the hilt, straight off.

How we understand all this. But it must be done. He has had several days of fighting VERY high numbers, which is incredibly bad for him. Last night we discovered 15mmols before bed. Changed the pump to the old, working set (again: always leave the old set in! We have done this over and over in the last few days, always leaving in one we know works), and corrected, but then got up twice more to correct, and set the temp basal to 120%…all night. He had been missing a lot of insulin, had become insulin resistant, and it was a haul. 

He remembers nothing of all this, fortunately! We however are pretty pooped. 

So he’s at school on the old set, which is overdue to come out. Because we can’t even trust the suitability of the current sets to risk putting another one in this morning. Chances are greater than 50% that he would have been home within the hour with another NO DELIVERY sign. Even though we are back to using the old, more fatty sites. They are just not right for him now.

So tonight we will try the new sets. No choice! If they don’t work easily, we will whip off to the first clinic appointment we can book. Can’t go on like this. Feels unsafe.

Fingers crossed!

***

p.s. the sun is still shining!

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.

Oh, you know, these things happen….

Only when they happen TWICE IN A ROW — it’s irritating and a little unsettling.

So Sunday is an infusion set change day (when the site for the pump’s connection — how the insulin enters the body — is changed. This is usually done every 2 or 3 days). No problem. But all Monday E is high. We decide to do a set change again, just in case. E does it, and halfway through its first dose of insulin, it sends a ‘no delivery’ message. He’s high and therefore fragile, and a nice chicken dinner is in the oven and he’s starving.

We wrap up the by now served out dinner. M goes upstairs to read (she feels particularly helpless when something goes wrong and she can’t do anything. We tell her all will be okay).

The question is: How much insulin, if any, has gone in?

We decree a faulty set (how? why? no idea), and play safe: we assume half may have gone in. Change the set AGAIN and give roughly half the ‘owed’ insulin. Spend the rest of the evening wrestling with numbers, but it does look like some insulin went in before stopping.

Manage to enjoy dinner.

Last night: set change day again. AND EXACTLY THE SAME THING HAPPENS!

Only this time, he is actually sitting down with food. And I have to be out the door with M in under ten minutes (a school play). 

He and I decide he will use the old set (NB: pump wearers: never take out an old set until you are sure the new one is working!!!) to give the rest of the meal’s insulin and deal with it later. 

Again: How much insulin, if any, has gone in?!

Turns out probably about what the pump said had gone in. Two hours later and he’s a little low, but it had been a cross-country running day and these are always tricky to manage…

At 10.30pm, we remember about the set problem (after the play), and all decide we will try the new set again for breakfast.

We do, and again, IT STOPS MID-WAY THROUGH DELIVERY. 

Damn. Switch to the old set again, give the rest of the insulin, and off to school. Can’t change set because we won’t know if it’s working properly until after he’s at school…

Sigh.

Phone Medtronic, the makers of the pump — who, as usual, are absolutely brilliant. Like us, they come to the conclusion that we are dealing with a faulty batch or box of sets. We switch boxes of course, and wait for them to send us more. Problem is, the box we have is the same batch as the faulty ones, but oh well. It seems an inconsistent fault.

Medtronic are pretty wonderful. Always pleasant. So helpful. 

At least it doesn’t appear to be a pump problem.

***

But it’s a pain. And too many of these sorts of events lead to a feeling of being very unsettled, unsure. At least on MDI (injections) you know the insulin is going in. Not to know what’s going in is pretty darn scary, because you can’t know anything for sure for a couple of hours at least…

So far so good though. No desperate phone calls from school. And we’ll do another set change tonight. Before going out to see the play!

***

Lessons:

1) always keep in an old set til you know the new one is working

2) trust the pump

3) batches can go wrong, but it doesn’t mean the whole world is ending

4) never hesitate to phone Medtronic

5) remain flexible!

I realise as I start this that for some reason nearly everything about diabetes concerns what the body does — and what we don’t know, can’t know, consciously or scientifically, about it. Sigh.

But this is about something different. Sort of.

At the last consultant’s visit E was told to start moving the site of his pump infusion around a bit. (There are quite a variety of places available; check this out!) He exclusively uses his tummy however, as that is the area that is most comfortable, with the most fat on his skinny self. And putting it into muscle or plain tissue is more painful.

The irony though is that insulin loves fat. It justs throws a party for fat, and gathers around it celebrating. And therefore doesn’t disperse as well into the bloodstream…which means that it doesn’t work as efficiently…which means that blood sugars may be affected. Irregularly and intermittently, because absorption may be such.

Which is so much fun. Sky-high one minute, dragging the bottom the next. What else is new in the world of teenagers with diabetes, we ask… Anyway, in truth none of us have noticed any particularly irregular stuff with absorption, but we have taken the whole issue on board.

E is beginning to develop ‘fatty lumps’ in his tummy, from overuse of these particular sites. SO… we are strongly encouraging moving around.

So yesterday is a set change day and he dares to move the inserter another inch out over his waist. This doesn’t seem like much. But I have to stress: each change to routine threatens the sense of feeling confident and safe. It’s like suddenly deciding to leave your keys someplace else at night: will you remember where you put them? Will you be able to get where you’re going on time? Will this somehow mean that you are more likely to have an accident? Etc.

Now throw pain into the equation. E knows and we know that another irony of fat is that it has no nerve endings in it. Which means that it feels like it wants you to always put the cannula in there…yes please, it says, you know you don’t even feel it when you go here

Sigh. So on top of moving location, he has to make the deliberate choice to hurt himself more and go someplace where there isn’t as much fat.

And it does. Hurt. On and off for hours. In sharp waves. So much so that he blanches and has to squeeze a hand.

Don’t get me wrong and please don’t misunderstand. This kind of pain with a set change is very unusual. Even in non-fatty places. A bit of stinging, and then it’s done. E says it hurts much less than injections.

But last night was different. We knew it was in right because his blood sugars were good. He just had to last through.

And here’s the thing: the body learns. The body says gee that hurts, and in time, by this morning, the nerve endings have withdrawn. They have dulled. And it’s all better.

All better. What the body does. Like my emotions, which careen over and over away from hurt, from that point that says this is part of his life and I hate it.

Over time, something in me has learned not to go there.

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.