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Well, after reaching the summit to Tryfan two days ago, yesterday the boys in Wales apparently bog-walked (ewww! E reports bog water over his boots), taking measurements or some such — and then swam. Which I reckon was sorely needed, after several walks and no running water (ewww!).

Number wise he was okay all day, though a little high, but in the evening things went seriously awry. For whatever reason (too much free carb? too low a temp? the set becoming non-viable? — probably all three), at 6.30pm we got a message that he was 24 mmols (over twice as high as the high end of what we were all aiming for while he was away) and feeling rotten.

It was dark by then, and they have no electricity. E had been trying to change his set (due a new one) on his own, with a torch, ill from being high, and stressed to the max. And wouldn’t you know it, for the first time since changing over to sil sets, his pump read NO DELIVERY.

A number of things then cascaded into wrongness. E was holding up, but only just holding on.

OH talked him through. Minute by minute, several phone calls, clear instructions. Try a new tube. Then a new cartridge. We gritted our teeth as E described all his pump equipment strewn around his bed in half-darkness. Talk about stress!

Tell someone, I texted him, in some desperation. They will be sad to know you are struggling.

He was still 21 mmols, despite a huge correction.

All of us had forgotten that he remained on a low temp from earlier in the day.

At last the new set was in with insulin that looked viable. But E was terribly shaken, still high, and of course would not be able to join the others for dinner (it’s unsafe to eat when that high for obvious reasons: more glucose stacks into the blood).

When E is that high — and I think this is a common reaction — he becomes emotional and muddled. He has to make a supreme effort to exert his considerable strength of mind and intelligence to trying to gain control, to understand sequences. The added stress of being away, in the dark, and on his own, meant that for a short time, it was a losing battle for him.

This end, we were losing our own battles too. OH was preparing himself to drive six hours and go get him. I was wrestling with useless tears. Daughter M, once again, had wisely set herself up for dinner in front of the box.

At last OH convinced E to go to a teacher. Who phoned within minutes. She had taken control quickly. Found things he’d lost. Sat him down to wait. Established how long he’d been high.

We tried to explain how he’d be feeling. We said it should get better. By this point we’d set a high temp, and anticipated him coming down fast. She’d saved some food for him. If he’s not down in a couple of hours, OH began — we’ll drive him to the hospital, the teacher said.

Probably not, OH said. They won’t know what to do either.

And this is true. Don’t even get me started on what medics don’t know. How they will remove pumps. How they will run both glucose and insulin in simultaneously (completely counter-productive). How they might think that 2 mmols is fine (when it’s mega-hypo), or that 6 mmols is too low (when it’s within range). Or that, so long as the person is feeling okay, 18 mmols is not bad (three times as high as you want). I’m sorry all you medics out there, but these are true stories. The training for hospital diabetes treatment must be seriously deficient, and is entirely crisis-oriented. By hook or by crook, diabetics survive hospital intervention. But so often it is ridiculously and even near-dangerously cack-handed.

Anyway. E had some carb free food: cheese, ham, cucumber, and immediately began to feel better. In 20 minutes his level was 17 mmols. He ate. In another hour, he was way down to 9 mmols. By this point the high temp was off. He had to have some free carb or he would crash. In another hour he was, yes, low at 3.8 mmols. Some juice, and more free carb.

Like a yo-yo. Poor lad. He set a 70% temp to reflect the exercise of the day, and we all agreed he could make it without night testing. Crisis over.

Only guess where they are headed today: SNOWDON. The highest mountain in Wales.

He must be shattered. Up until nearly 1 am. A walk lasting many hours in front of him.

We’ve barely heard from him this morning — a rush getting out, apparently. I’m fearful that last night will hang over him, tempt him into insecurity, into double-guessing his judgement. He’s SO good at all this. He’s great. We keep telling him.

A little prayer then: let last night go. Start the new day. Trust your instincts. Know that you are strong, and can do anything.

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Just a word here to say that living with Type 1 and getting out into the world and doing challenging things requires it. Lots of it: grit.

E and we have been in good text contact over the last two days. Lots of ups and downs. The cottage is disorganised and dirty. He wants his space and a sense of structure and control (a bit control freakish, like lots of well controlled diabetics, one suspects!). Can’t have that. A bit of a struggle.

I forgot to pack the scales. Don’t even go there.

So lots of estimating. A little added stress.

So far he’s had two mornings of heavy walking accompanied by almost constant dragging the bottom — floating around 4 mmols, with occasional hypos — for hours. He’s on 0% temp, eg no background insulin, and eating loads of food without insulin: cakes, cereal bars, sweets, juice, chocolate, sandwiches…

Then last night he had to negotiate raising the temp a bit to account for higher numbers in the afternoon — 12 mmols for too long to leave. 

Managed everything perfectly though: 60% temp all night, waking on 7 mmols.

Wow.

So today he undercarbs breakfast in an attempt to start his walk higher, and spikes way high (20 mmols). Under corrects but anyway dips low again all morning. He tells us they are taking a mountain guide and going out to climb a mountain with a rope. I send back a whoo whoo enjoy it kind of message, but feel myself  battling the urge to check my phone all the way through class…

Discover that this is what he’s climbing. I can barely bring myself to look!

And then this: constantly around 4 (he writes) and having tons of carb. But having the time of me life at the moment.

Bursting with pride. I’m at work, loads to do. But I’m about to walk upstairs and find someone just to say this to: anything is possible.

Well that was an incredibly quick but somehow slow and full few days! Heavens.

E left for Wales this morning, wary of bringing too much with him and therefore seeming different. I squeezed apple juices, fruit pastilles and extra diabetes kit into every crevice. Upon arrival, at least two other boys had much more stuff. Phew! He’d given us all our hugs before leaving the house. At the school it was a wave and a ‘bye’ in his nearly-deep voice, up the minibus steps, and they’re off.

Sniff!

Another boy with T1 is going this week too: E and T have been getting to know each other — first by hearsay, then by proximity — over the last year or so. They are both music bods, and though they have very different diabetes regimes and needs, they get on. This week when E was feeling wobbly about it all, he kept reminding himself that T would be there. They could look out for each other. And more to the point, understand something about what the other may be going through, even if it’s only a version of what the other feels.

I confess to feeling relieved myself about this good fortune. To the point that as they pulled out, I saw that E and T were sitting next to each other. They’ll catch each other’s hypos, I thought.

A bit silly, I know.

***

It will not surprise anyone to know that it took me (and E) over four hours yesterday to pack him up, going through everything again and again, situating it so he’ll remember what’s where. This, and the hours I put into pre-ordering sets and reservoirs, extra insulin, lancets and strips… and getting him the normal stuff (somehow thought one pair of jeans wouldn’t do, duh!): trousers, fleece, walking socks, base layers… Fortunately, perhaps unlike some of the boys going, E is used to hiking. We have a picture of him sitting on top of the first mountain he climbed rather than was carried up, the Lakes below and behind him, at age four, smiling his head off.

For this trip, I really hope he takes a lot of pictures! 12 boys (including sixth formers). It will be a scream. Imagine the state of the air on the bus back…

***

It’s been a week of oddly used time too, whole patches of stretched out stuff mixed with manic hours.

Now that I know what happened I can tell you the following: on Friday I lost the kittens. Well, three of them. I had lowered the barrier in the sitting room, and out they flooded. We’ve been having a hard time with little poos in corners, and I figured maybe Cleo wanted to show them HER litter tray in the bathroom (which she did, immediately, to be fair). Anyway they were having such a good time, all of them racing around the house and Cleo very happy, that I went upstairs to do my emails.

Fifteen minutes later I came down, and could only see poor Artemis, wandering around the place meeping piteously.

Cleo wanted to go outside, unconcerned.

So, I looked for the others. And looked and looked. With a torch. Moved the washing machine. Emptied bags. Took the suitcases out from the under the spare room bed. Absolutely everywhere I could think of. For an hour and a half.

Cleo came in. Artemis cried. Cleo fed her and did not call the others.

She’s given up on them! She’s saving her only kitten!

I went outside and called and called. I could not imagine how they would have pressed themselves through the bricks to get there. But anything, at this point, seemed possible.

I phoned R. We decided it did not yet qualify as an emergency. He advised me to have a drink.

I went outside again, Cleo following. Oh lord, she thinks they’re out here too!

I went back in. And lo there was Archie, stretching his way around the sitting room. Toad, I thought.

The chocolate twins Athena and Eudora were no where to be found. But I figured if he was safe, they were too, probably still sleeping wherever. I went out to get E some trousers!

I had to be out until about 6.30pm, R under clear instructions to get home as soon as he could. At 5.30 I got a text: four fluffy kittens present and correct in the sitting room.

Argh!

***

So last night I heard a meeping in the sitting room. We were all there, sitting around. Looked under the sofa, where it seemed to be coming from.

Just in time to see a white kitten emerge from INSIDE the underneath of the sofa, just DROP DOWN and shake herself off.

Crumbs!

No wonder I couldn’t find them!

I could have wrung their necks. Except that they are so cute.

And a few minutes ago, I peeped under the sofa again. A grey tail hanging down.

Honestly.

***

Here is the vid as promised, now quite old. I’ve taken another one today of them playing with a wastebasket, which I’ll put up.

Time is not really on my side at the moment. But E just texted to say he’s 5.4mmols and all well. How grateful I am for modern communication… And for having a lovely young man for a son.

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.