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Yes, it’s been a bit like that: like ha ha let’s play ping-pong…

Sigh. Two nights ago E is 10 mmols at 12am. I do a correction dose, thinking okay not  bad number, little unusual to be that high 4 hours after eating, but hey… Then at 3 am I hear him coming to our room. He’s big now, bulky in the doorway like his father, and for a moment I have no idea who it is! Then he says, I’m 24 mmols and feel absolutely awful.

A sudden spike like this hasn’t happened in a number of months. And of course it would happen when R and I are both hammering through huge piles of work — markings, plans… Hence why I’m up at 12am testing him!

Anyway. Nothing to be done. All hands on deck. Check pump is working as far as we can see — fine. Give whacking huge dose of insulin (what the pump recommends plus a whole extra unit) and put him on 200% temp basal (eg twice the amount of insulin he normally has dripping in per hour).

We wait for the insulin to take proper effect, which we know will be about an hour and a half. Meanwhile E feels sicker and sicker, and then, with awful predictability, begins to throw up. We know he has ketones. He tries to drink water, but can’t keep it down.

An hour later his level has hardly come down, 22 mmols. This too is not unusual — with such a high, the body can become resistant, and it takes more aggression with insulin to lower things than it normally would. To cover all possibilities (in case something invisible is wrong with the infusion set currently in him), we do a set change. E as usual does everything himself, but we can see it takes everything he’s got, as he fights to do it between bouts of retching.

We correct again, again overriding the pump (which remembers what it gave an hour ago), in case some of the last correction dose didn’t actually make it in (in case the set was faulty: see the inexact science of all this! All guess work! And too much insulin of course will send him crashing into hypo, so you just do it and pray…).

It’s pretty dire. My heart breaks for him. He’s so exhausted he dozes off, and so I go back an hour later: 11 mmols, a massive drop.

Phew. It’s over. By this point it’s 5.30 am, and we are due up in an hour. I go back to bed, fearing that with all that insulin sloshing around yet to take full effect, he will be hypo in an hour. But I’m desperate for sleep.

At 6.30 am, he is 8 mmols. Not hypo. Phew again. Made it.

Poor E soldiers on. He gets up, gets himself out for school.

We can only think this is all from his cold. Which drags on and on: cough, chest, nose. I’m watching him closely for infection. He’s not 100%, but surviving.

So yesterday at school he begins to go high again, but manages it himself: overriding the pump for a correction dose, and putting himself on 120% temp basal all day. He wrestles his levels down… And we hear nothing about it until we are all home last night.

It’s hard to overstate the pride I feel in his grit. For getting through the night and pressing on, but also for then making his own decisions, the right ones, yesterday.

It’s also hard to overstate the grief I feel for a future where he will have to make it through nights like that on his own. He will have to do this stuff with no one beside him.

Once again I turn away from this thought. I can’t make it better, ever. I never wanted my children to have to be this strong. Yes — like I had to be. Those who know me will know what that means, and those who don’t will just have to believe me. So if there was one thing I wished for my children, it was not to have to deal with big heavy life too soon.

But life has dealt us this hand. This arbitrary hand. And our children will have to endure. E will have to endure things that most can’t imagine. The potential toll on his mental health, not to speak of his physical health, grieves me. My children will have to be unusually strong unusually young. Like too many, it must be said. Still. Why can we not protect our children?

***

I know that they will make it. Are from stern stuff, whole stuff, sound stuff. And they have us, who have with every fiber tried to give them what they need not to feel too alone too much of the time…

I know all this. But it all seems just something I tell myself to feel better when it hits me in the middle of the night.

 

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Worry

Guilt

Envy

Anger

Fear

***

In a funny way, I’ve become quite adept at side-stepping these big abstractions. I used to worry in a kind of hectic, random way. About everything. Now — well now that there’s so much to worry about, I tend to let most things go.

I used to feel guilty about every moment that was my own. Every moment I wasn’t living and breathing diabetes. I used to feel guilty for not having diabetes. Well, life is too short.

I used to feel the sour pull of pure envy when I saw families — young lads, parents, children, out eating what they wanted, talking about the traveling they will do, the nights they spent sleeping on friends’ floors, sleeping in their clothes, a night on the town etc — and thought that will never be us, can never be us anymore. Now I turn away from it. You deal with what you’ve been dealt.

And anger of course is never far from the door. I can feel it prowling. Often. Walking back and forth out there. But my energy is better spent elsewhere. It has burned everything there was to burn.

As for fear. The hardest for me. Primal. At its worst, I don’t want to go out. Don’t want my family to go out. Wake sick, afraid that this arbitrary bad luck will strike us — in so many ways, again and again.

I’m wondering if the fear is always closest to the surface. Last week M woke in the night, desperately thirsty, going back and forth to the bathroom, cupping water in her hands to drink. In the morning, she confessed that she then could not sleep for fear of the big D. Later, E bled her slim finger and tested her. The relief in the room was tangible when the number came up: 5.1 mmols. You’re fine, he said. He said, and smiled. You can’t be anything but fine. And gently laid her hand back on the table.

Of course I cannot go another minute without noting the progress of our kitten babies since I posted in the autumn. This is what they looked like at about 14 weeks. R had gone into the bathroom (where they had been placed to be safe from the vacuum cleaner!) to collect them all up to take to the vet’s for their vaccinations… and he found this. They climbed up there all by themselves. The caption is his:

 

"But we don't want to go to the vet's..."

 

Since then, three of our lovelies have moved on to happy homes. Eudora — Miss Fiesty and adventurous, first out of the box and always up for a good time, was first to do in early December — on a plane back to the States with my sister, B! Oh yes indeed. Little Eudora was apparently a real trouper, traveling to the airport, on an eight hour flight, a two hour stopover, then another hour flight and another drive — all in a gorgeous padded carrier. In hand luggage. Wow.

Artemis and Athena went together to a fellow musician and sister-in-law of a work colleague. We met on a snowy day in the middle of England to do the transfer. The family have always had long-lived, indulged cats — and from the pictures being sent back to me, they have already started down the road of happiness there! Artemis and Athena both emerged as company-needing, extremely loving, cuddly cats. They desperately needed to be together, so I’m so glad they could be.

It’s been a real joy to give them such loving homes. A great relief.

So we have Archie — Archimedes — now as the sole little one. He’s the really laid back kitty second from the right. He and Schubert have a good relationship, sometimes sleeping together and often playing. Schubert can nearly squash him however! But Cleo (mum) almost always gets cross at Archie. She sniffs and plays a little, then growls and bats… It’s kind of sad. Poor Archie. He rolls over and gazes up at her: love me!

He cried for two days when the others went. And the grown up cats were like what you want us to play?! Where are your friends?

He is a stunning young lad though, just beautiful, and very loving. I think sometimes he is still a little lonely — and a mixed message mum doesn’t help — but we give him all the love we can. He also likes to sit and stare at the guinea pigs, occasionally prodding them gently. Bless. Shall try to get a good photo of him as he is now.

***

I’ve sort of thrown a table of blood sugar levels into the sidebar for people’s reference. I talk so much about levels and what is target and what is low and what is high, that it does seem a good idea to follow my sister B’s suggestion of putting up the basic info. The sidebar widget though doesn’t have any formatting with it unless I write it in HTML, which I don’t really know…so it’s really DARN basic right now, though I’ll keep after it.

I did want to say though: notice how narrow the target range is. And shall I shock you by saying that in the last two years I think that there have only been about four days (eg 24 hours) when all of the fingerprick blood tests have shown E in range. Of course between them he may have been all over the place. And what’s for sure is that generally he’s all over the place. As everyone with diabetes often is. This morning he woke low. Before dinner last night he was high. Etc.

No wonder it’s easy to feel like you are always, always doing something ‘wrong’. Not to speak of fighting a losing battle.

Also just to let you know: E was 32 mmols at diagnosis. And on Sunday I heard of a friend’s relative who was admitted to hospital with a level of 72 mmols.

So aiming for 4-8 mmols can sometimes feel like threading a camel through the eye of a needle. Despite all the hope of reduced complications it brings.

 

Almost three days old!

I’m pretty sure that photos of newborns of any species are beautiful pretty much in the eye of the proud grand/parent, but here we are! I snuck in and snapped this first thing this morning, when mama Cleo had popped out to have breakfast and do her usual cruise around the house looking for a singularly inappropriate place to move the babies… Scale-wise, each baby is about 100 grams at the moment, with one slightly larger, at 120g. This one is also the only definite BOY. We *think* we have one boy and three girls. They have increased their weights evenly by about 12% in 24 hours. That’s some growing…

I’ve just stuck my head in. Lots of feeding noises, lots of bickering — I want this spot, no I want this spot! — with mama purring away and resting her head on the backside of one of them. Aww!

She’s very happy. And I’m very happy, because at last this morning she managed to do all of her litter tray ‘business’. Number 1s, as they say, were fine from the start, but I was just getting to the point of trying to investigate mild kitty laxatives, when aha! Done deal. All looked healthy and good. Phew.

My only remaining anxiety (well aside from the larger ‘what is life’ ones and the longer term ‘will all the kittens be okay’ ones) is WHY she won’t drink the water in her room?She has two little bowls, both of which she has drunk out of in other parts of the house, both of which I’ve shown her and dabbed on her nose… But still, she rushes downstairs like a bat out of hell when we let her out to drink from the one on the side of the bath. I mean, I ask you!

I remember what it’s like to breastfeed. You are THIRSTY. Silly girl.

***

And last night I finally had some sleep that wasn’t fraught with worry. I didn’t jerk awake thinking the kittens were squashed, and E’s 3 am number was okay, as was his morning one. Hurray! Perhaps we will not set the alarm tonight? Nah. Too soon. But we may be getting there, for a short time anyway.

Deep cleansing breath.

All well with the new additions: four healthy seeming, good feeding and content looking sort of white kitties. Cleo continues to languish in her box, kneading the air — which is called bicycling, and is a very good sign that she’s lactating and happy. She’s certainly purring a lot!

Last night and twice this morning she asked to come out of the room. She proceeded to eat loads of Schubert’s food, drink from the bathtub as of yore (remember, she has all her own food and water in her room!), and explore the WHOLE house. She keeps checking out her old possible nests, and at one point found a few more: under the sofa, under the bathroom cupboard… Right.

Absolutely NO WAY, is all I have to say to that. We can’t keep those babies safe in another situation. They will set off across the room again. Schubert will think one is a toy. It’ll be awful.

I’m only just beginning to stop feeling faintly ill from constant anxiety. Stay where you are Cleo, in a nice, furry cat basket, lovely and warm and quiet. You really don’t want to move them to the middle of all the action. You really, really don’t.

I’m also getting over my anxiety about her adventures away from her babies. She leaves them while content and wanders about the house, for 20 minutes sometimes. Although as I type she’s been snoozing with them (who can blame her, after what she’s been through) for six hours. But when she wanders, I fight panic. I’m afraid she’s going to forget about them. I know that’s silly.

I’m silly. She now knows what she’s doing. And they are stronger every hour.

I remember a dream I once had about forgetting newborn kittens in a cupboard in our old house. I looked and looked for them, and never found them. When I woke up, I was devastated. I had this dream years ago, around the time I lost a pregnancy.

Strangely, I think it’s that feeling which has partly come back. Combined with the panic of having an actual newborn baby human: like if you forget about them for a minute, they will come to harm.

Not true, of course. Funny how I have to learn that all over again.

***

In the land of type 1 diabetes, we are still struggling with night numbers in particular. Having lowered the basals, things once again went a little high last night. The thing is: we are dealing with a moving target. Diabetes never stands still, not in adolescents, anyway. What may have worked two days ago has no guarantee of working today. At the moment anyway. We can only keep pitching the balls, and hope to at least stay in the ballpark….

And I forgot to say in yesterday’s entry that roughly two hours into Cleo’s labour E came in and said that just to add to the stress he had just figured out he’d forgotten to bolus (take insulin) for lunch. Which was rice, a seven hour dual wave (dripping in of insulin). Which explained why he was 23mmols and feeling grim.

Sigh. No one’s fault. It’s so easy to do in all the fuss. But it took him three hours to come close to back in range, 11mmols. And then of course by 11pm he was too low.

Sigh again. He handled it well and didn’t complain, even though I know for an hour he thought he was going to throw up.

And during that time, two more kittens were born.

Well, things have warmed up here in the SE of Britain — even the rain is warm now — and with my hut days finished (sniff! pictures to follow) — my attention is turning to a) getting another hut; b) the garden and c) external examining, planning for next year, my own exam boards and and and…

Guess which one of the above actually takes up the most time? Yes, it’s the last one (Eeyore-ishly said).

ANYWAY. I’m mainly on here today to say that much as I adore my fast-growing beanpole of a son — who since Christmas must have grown three inches and now stands substantially taller than me and taller than his grandfather and not a million miles away from his *father* — we feel locked in a bit of a battle with it.

Herewith: went to clinic on Friday and the ol’ HbA1c (complicated averaging of blood sugar levels over three months) is the highest since diagnosis, and outside of high ‘normal’ for the first time too, eg over 7mmols. Damn. And other, much ruder, words.

We think we know some reasons for this:

1) all the fuss with the sets messing up. We had some stupendous, recurring highs with those problems, and knew that this alone would affect this HbA1c. (The new Silhouette sets, I am pleased to report, are still MUCH better, despite having been yanked out again by accident — ouch — in a game of football at the weekend. We were all no doubt suffering from sunstroke, because in that sort of running around he should have had it off anyway, but oh well! Soon replaced, bravely.)

2) growth hormones. Bane of everyone’s existence blood sugar-wise, except that of course growing is good. Very good. But after a couple of weeks of high mornings, then suddenly we had another week of low mornings, then you guessed it, another week now of high mornings. Bit disastrous. We just begin to think we need to change the basal rate from 12am-3am, and bingo! The trend has reversed. This is probably almost exclusively down to growth hormones. And probably too indicates that in the night all kinds of highs are happening about which we have very little awareness. This is disheartening in itself, as we are trying so hard. But we suspect that this is at the root of his higher HbA1c. We simply aren’t catching the night highs well enough.

3) Being slightly more laid back about numbers. This is a good thing, again. Healthy and to be desired. But perhaps we have let a little too much slide? The increments of vigilance are just so tiny, yet seem to make such a difference. Damn. We are NEVER complacent. But taking our feet off the gas is something we have done a little… But maybe we have allowed the car to slow just too much in this 50 mph zone…. Argh. You get caught by the camera whether speeding OR going too slow….

***

So I won’t pretend we aren’t a little bummed from this recent number. The doc however says it’s still WAY better than most adolescents manage to achieve. Be that as it may, we are used to better.

So, again. What are we doing about it?

1) Last night we went ahead and raised the basal for a couple of hours. He had a steady night on 6mmols.

2) We are trusting that the new sets (with their clear stability) will impact the next measurement.

3) E is expressing a clear desire to try a CGM(Continuous Glucose Monitor). This device measures the blood sugar level via the tissue rather than a pinprick, and is in situ for 7 days at a time. It is not entirely accurate, and you cannot dose insulin or take any real action on the basis of what it reports to the pump…However, you *can* ascertain trends in blood sugar, which will be enormously useful to us in a time where we are suspecting that we are missing highs. It is extremely good for discovering patterns, and we are extremely fortunate to be funded for it in our area. This, we hope, will help, even in this seemingly pattern-less time of adolescence!

It is to E’s credit that he now is firmly for trying CGM. It involves another ‘thing’ in him at all times, and another 45 degree insertion, which is what put him off it entirely initially. Now that he is used to the other sets, he is stepping up his game, and can face it. This is his decision.

Once again, I am proud of him. We are proud of him.

Chasing all this all the time is a true pain. And incredibly inconvenient in his life. His sights are set though. He knows he wants good numbers. And we will do everything we can to help him get them for as much of the time as seems sensible and realistic — and not obsessive.

So in two weeks we will attend our other clinic, at our shared-care hospital, to learn how to do the CGM insertion and set up the sensors. Deep breath.

So we decide that the best thing to do is finally do a basal test with E. This involves concocting no carb meals so that we can get a good luck at E’s background or ‘fasting’ blood sugar levels. This means frequent testing too of course. But the early evenings and nighttimes have been very problematic of late: seemingly unpredictable, seemingly swinging because of foods (really?), exercise (really?), and growth hormones (probably). And we won’t even go to the issue of the set changes in the last few weeks. Heaven only knows the effects of that.

ANYWAY. So from 6pm yesterday, no carb. Great and inventive dinner of chicken marinated in yoghurt, mint, chili and lime — lightly pan fried — on salad, with some mozzarella slices. Then a sugar free jelly (jello). All of which adds up to maybe 2 g of carb.

SO. He starts a little high (9 mmols) so we have to correct and give half a unit of insulin, but don’t add anything extra for the food. Two and a half hours later he’s still too high  — 9 mmols. (This is without eating anything remember, so MUST indicate that during this time on this day the basal or background insulin is too low.) So we have to correct again. Two hours after that he’s 10 mmols. So we correct. Clearly being pulled high has outweighed the earlier correction. Then 3 hours later he’s plummeted to 4 mmols.

Sigh. This is *precisely* the opposite of what we had thought was going on, and which our adjustments had reflected last week. We had thought he was being pulled low in mid-evening (so we lowered the basal an increment) and he has been sky high in the mornings (so we raised the basal an increment). Whereas last night’s test revealed that — for that day, anyway! — he was as a result too high in the mid-evening and too low in the morning.

Back to square one. Or maybe not. Maybe it’s a one-off. Certainly we feel that his morning rises have been almost entirely hormonal — and irregular, unpredictable in the extreme. This is where we wish for a) smaller increments on the Medtronic and therefore finer insulin tuning and b) a willingness on his part to deal with continuous glucose monitoring. It would help enormously in this case not to just have little windows into his levels, but watch the pattern of it… Oh well. In time.

Add to all this that yesterday was a ‘stay at home’ day, in which he didn’t get out of his pajamas, and really, the test can only be a bit accurate… His levels will be quite different we suspect on a school night. We already run him on two patterns on the pump, with different basal rates — one for school, and one for weekends and holidays — so we no doubt have to do two ‘fasting’ basal tests too, in order to get anywhere.

Sigh again!

***

The good news is that another silhouette (45 degree) set is in. The positioning of the hand and the body can be very awkward and unsettling, but he held on to his nerve and did it. Done!

***

And finally, I wanted to show you what I did on Friday. I looked at life for really quite a long time from this angle. And wrote four poems. I don’t know why the coast has set me on fire in such a way, but it has. As a friend said, they are just coming out of the oven cooked.

I watched the tide come in, and how the angles and rapidity and groups and heights of the waves changed over the day. I’m completely fascinated by this. It’s meditative yes, but also occupies my mind in an unaccustomed and direct way. I focus, really focus, on what’s in front of me.

Enjoy. Notice the filigree patterns of the water on the beach, like lace. And the way that sometimes the waves surge forward, and sometimes they just drop. And that they arrive in groups, and that a third of them are larger than the others… This all just screams poetry to me. I realise this might just be me, however!

I’m sitting in the beach hut, and I’ll admit my mind is a little fuzzy. Two reasons, I suspect, for this: beauty overload; and too many chocolate fingers. They have nothing to do with each other, but both lead me to a bit of a spaced out state!

The sea and the sky are an almost white blue-grey today, and there is only the faintest horizon. I’ve already drafted two poems this morning and expect to do another before packing up for the day. This post, in truth, is me ‘holding back’ from the next piece. It’s not quite time to write it. Not sure why. But a little while longer coming to the boil is what’s needed. Maybe ten minutes or an hour, no more – or the pot boils dry and can’t, in my experience, be re-filled.

Our trip to clinic yesterday was useful, energising, and hopeful. We had done everything right with the new 45 degree sets except pinch the skin in order for the needle to get proper purchase on and guide the cannula in. We all watched carefully as our brilliant Diabetes Specialist Nurse (DSN) demonstrated the insertion on a blue cushion (no Manky!). And then E, with the same quiet clear-headedness and courage he has shown from the beginning of all this, did all the steps on himself.

His father and I watched as what looked like a huge needle catapulted into E, skimming just under the surface of the skin. Perfect. He peeled off the backing tape, removed the needle – leaving the cannula in of course – and voilà. One of his final sources of real distress conquered without any evident hesitation.

So far so good. We discovered two more options to try if these sets prove difficult or not right in some way – again, bless our DSN’s pragmatism.

But right now E is very pleased, as are we. Many more sites for sets will be opened up if he stays with them. And they are much flatter than quicksets.

And you know what: NO PAIN except a pinprick for a couple of seconds. Compared to the teeth-gritting and watering eyes of every set change in the last three months, well…. Any chance to not have to be QUITE so brave he welcomes. And lord knows we want him to take it.

— Posted in the Little Blue Hut

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.

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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Distance Travelled

Disclaimer

I am not a medical professional. Any view expressed here is my opinion, gleaned from experience, anecdote or available research.