Follow every rainbow

E returned in fine fettle on Sunday — less odorous than anticipated! — though the suitcase was a sight (and smell) to behold, of course. His duty on the last day was cleaning the chemical toilet… Oh dear. But he seemed to get through it okay. His sister had made him a smashing welcome home banner, which he acknowledged with real affection and appreciation. And within minutes he had managed to download his camera, shift everything to a memory stick and then onto a slide show on the television….

O-kaaaay. I didn’t even know you could do that.

Sigh.

He had taken a shedload of pictures, and narrated us through. Some really beautiful shots, and some great history, environmental concerns, and shots of wild horses (taken even in the rain!) for his sister. Bless! Will try to get him to do a guest post…

Several things to note from all this. Well, lots, but I have to be contained. Time is of the essence today.

1) the staff were brilliant. As were the sixth formers. On the first night, E had a tough time. He felt very sick, disorganised and probably panicky. One of the teachers moved out of his bedroom, and T & E moved in. The teacher slept on the table for the rest of the week.

2) everyone stopped when either boy went low. One of E’s misgivings was that he would be left behind when hypo, even though he knew someone would always be with him. But in the event everyone just stopped. No fuss. E said that everyone just used the chance to talk. To tell their life stories, he said.

3) it’s clear that E hasn’t lost the ‘give it a go’ quiet confidence he has had for several years now. Apparently he tried everything, and did everything. Even things that some others wouldn’t or couldn’t. There was one small activity: threading the needle, I think it was. They foot-holded up the inside of some rock, then through the top… Lordy. He did it. He said people pulled him through at the end, but he did it. Only a few did. I can’t help but wonder if his success is also about allowing others to help, trusting teamwork in the end. Interesting…

4) coming down Snowdon, E took quite a tumble and really bashed his knee. He felt dizzy and breathless.  The guide was straight over, making sure, as E said, that he ‘could move everything’. E said he could walk on it, and up he got. But what I want to say is that two or three more times in the next half hour or so, the guide asked how he was. That’s good care.

***

Those are some of the tangible things. But of course there are so many intangible lifts that come from an experience like this.

1) He wants to keep walking.

2) He knows he can manage extreme situations. He knows what he would do differently next time.

3) WE know he can manage extreme situations. We know others can be trusted.

4) Diabetes didn’t stop him.

5) Diabetes didn’t stop him.

6) Diabetes didn’t stop him.

7) And all that this implies.

***

Something has shifted. Some kind of small attic window has been opened. And beyond it, is sky.

Numerous ranches

Things continue to be hither and thither — hence my struggle to post! Apologies. What always then happens of course is an overwhelming urge to say EVERYTHING.

Not possible. So a quick run through: we think Cleo the cat is with kitten! Her brother is able to tolerate her, phew. We had a party for 30 people last week, and the sun managed to shine throughout! Phew. I’ve taught some year 6 (11 yr old) and today year 5 (10 yr old) school children poetry these last few days too. Really excellent fun. Phew! I delivered a paper to the Poetry and Voice conference at University of Chichester over the weekend. On how different sorts of writing have served different purposes since my son’s diagnosis — and on how the beach hut poems came about. Went well I think, and the whole conference was a stimulating one. Phew!

Not so phew: daughter M, six weeks after cracking her cocyxx in a rounders match (seriously painful, missed two days of school), then jammed her ring finger on her, yes, fingering hand…. So has had to re-schedule her violin exam. Oh dear. Very painful, swollen joint. Little delicate hands. Sniff!

Not so phew too: battles with lows. The heat seems to have had the generalised effect of lowering E’s insulin needs, so last week we had several evenings of unfortunately several hours of dragging around in the 3’s and 4’s… Even with the pump on 0%, eg actually off. It was extraordinarily wearing for him, and a I don’t mind admitting that one night it was a little scary: no insulin going in, already treated two hypos, and gee, 15 minutes later he’s still on 2.5mmols... Disconcerting. But we got up I think half a dozen times that night, and by morning he was okay.

Sigh. Then after 3 nights of going high from too low a temp basal (too little insulin) in the day — we think we’ve sort of cracked it. For now! 90% temp basal in the day, plus 90% of the usual carb counting/ratios. Turn off temp in early evening to stabilise for the night. Unless he’s exercised of course…! In which case turn it to 95%.

Assuming he remembers that he’s exercised.

Assuming that we remember what he’s told us. And that we all don’t crash out on the sofa from SHEER EXHAUSTION while watching the World Cup, where England did SO BADLY. Oh dear.

Did I mention that on the way back from Chichester the car sprung a diesel leak and I ran out of fuel while passing a truck? Scary.

And had to wait on the motorway verge 10 miles from home. Never, ever nice, traffic whipping past at 80mph. I took my linen trousers and sparkly flip flops into the nettles and thorns, up the bank, I can tell you!

And did I mention that because one car is in the shop I did all the driving this morning: child to school, OH to work. And oh, deliver a testing kit to the OTHER child across town, because accidentally forgotten….?!

But we’re here. And we’re okay. As long as we keep our juggling hands free.

Spring Break

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

Friends

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

What the body does

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.