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Things were so fraught last week that although I had a lot to say, it all slipped out of my grasp…. We boarded the internet-less boat called ‘Holiday in a Hot Place’, and I left everything dangling.

And here we remain for another week and a bit. Several days in, we are unwinding, reading a book every two days, eating lots of tomatoes and soft cheeses. Not to speak of wine tasting!

E’s numbers are so far so okay, though early on an approaching cold combined with pizza weirdness sent him into a nasty, throwing up hyper (>15 mmols) that took us hours to conquer through 200% temp basals and overriding pump corrections…. The cold itself was hardly anything by comparison. Grrr.

Other than that, all the pool play and walking has meant hours off the pump, 50% temps and still having good numbers for the most part. Mornings tend to be a little high, but this is a holiday pattern: he seems to particularly GROW over breaks! We are also having more slow-digesting food than usual – pasta, rice, lentils – so OH and I are up once again every night testing dual waves – but with life this laid back it’s hardly noticeable.

Which shows how not laid back life normally is, sigh.

I’ll sign off now until after 9th August. A bientot.

— Posting on the move, tiny screen!

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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

1) even though you don’t know why something has happened, you know how to make it better — and it gets better. We don’t know why E’s numbers have been so low the last few days. But we have settled things by going for a long term 85% temp basal (lowering across the board), even lowering meal ratios by 15% (eg the amount of insulin to number of grams of carb: this changes in every person, from meal to meal, but usually remains the same for long-ish stretches day to day). And he has stabilised. 

2) the sun is shining.

3) you find your daughter a great pair of shoes that fit for once, and are all European, on sale, and gorgeous and she loves them.

4) you go shopping with your daughter, and she winds scarves all around you a la Gok’s Fashion and discusses things like textured finishes. And she’s only nine years old.

5) you’ve written one poem anyway that begins to starts to seems to get close to some things you might want to say. 

***

Suffice it to say that two nights ago we had a REALLY grim run. E dragged the bottom for hour after hour, with two hypos which made the horrible adrenalin/fear come.

It’s hard to explain this without getting emotional. But it’s pretty awful — really awful — to see one of the three people you love most in the world, and one of the two people you actually brought into the world — in such confused fear. So frightened, and feeling so alone. Because we don’t have hypos, and have never had one. We can’t know what it’s like to be muddled, to be angry and afraid in that way, and feeling not safe. It’s the brain that does this, when starved of glucose. It begins to race adrenalin into the system, which produces panic and fear…

We reduced the insulin big-time, kept giving carb without insulin, and he came up. Eventually. By morning.

And yes, if it weren’t for my children, I would give up my life for him not to have to deal with this. Not to go through this. The everyday relentlessness of it — and oh, as if that weren’t enough, the added one-off panics, the moments of tipping over into frightening lows or sick-making highs.

So yesterday was not a good day. He stayed home from school, completely exhausted. I wrote a poem and tried to answer emails.

We put him on 85%, where he remains.

He made it through his performance last night — which we all attended and enjoyed — and also sang today in a chamber choir competition. He and his sister played and talked for two hours this afternoon. This has happened before: after a crisis, they intuitively want to re-connect.

And yes, his sister. Her day at school yesterday was also pretty dreadful. She cried in Maths and cried during English. She was worried about him. And angry that he was home for the second day this week. That maybe we were taking more care of him than her. And recovering from a cold, trying to understand it all and deal with all this conflict inside her… 

She had a long, honest talk with her father, and her teachers looked out for her.

*** 

She’s okay today. Miraculously, after the unremitting rock bottom two nights ago, somehow we are all okay. Again I say: it’s incredible what you can get used to, how many blows you can take and then get up and enjoy the sunshine.

I started this meaning to sound better….and I hope I do. I feel it. A bit sad, a bit flat. But this is not unusual. I know it will wear off a bit.

And we went shopping. And, I’ll say again, the sun really did shine.

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.