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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.

Just a glancing post to say that E (and T) made the summit of Snowdon yesterday via Knife Edge (250 meters of toe-hold rock scramble across ridges, sheer drops either side!), in heavy fog, and then all the way back down…

Inordinately proud of him (them). And for taking so much so lightly: only a coupla hypos (he wrote) and a little high, but meh.

When asked what it was like, to us he wrote: Knife Edge was terrifying, but quite easy.

To his sister: You could only see 10 meters all around. It was like walking on clouds.

***

Sigh. A good night for him last night — no panics — and for us too: last minute, our special friend Nancy took us out for a meal. Daughter M stayed up chatting over her British cheese board in style, and we enjoyed confit duck with lentils and pear!

Feel completely lifted today. He’s done it. He can do it. And so can we all, sister M included.

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.

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.