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Spring is springing so hard it’s practically bouncing off the page! The sun has shone almost without interruption now for two weeks. The tiny showers have made all the grass green and the tulips livid with life.

1) Thank you to everyone who sent me messages (see About on this site, but I’m afraid you can’t hack into my email, 🙂 ) about my article in Balance, the Diabetes UK bi-monthly magazine. I do what I do because it presses upon me to do it. Just hearing from people and knowing that somehow we all have places to go, and that I might, might be laying one tiny bridge of connection down for folks — this is good enough for me. This is what it’s all about. Thank you. My column continues in the next issue.

2) The beach hut is the BEST THING since sliced bread. I’m writing a lot. The sun is shining. At the end of the day it goes grey, and the horizon mixes the sea and sky. I’m researching coastal terminology and just plain watching the water, the birds, the dogs being walked, the children playing, and the slow flow of the tide. The whole thing is astonishing. I haven’t felt this connected to writing life-wise in years. Years. (Yay!)

3) Daughter M celebrated her 10th birthday yesterday. Like me, she has a tendency to tell everyone she knows and thereby reap the rewards of good wishes! She was in possession of the Birthday Cushion from her maths teacher all day, which she could sit upon, carry with her, flash at everyone and generally enjoy. Her name was emboldened upon the big screen by the school library. Her class sang to her. She ate cupcakes. Her brother downloaded a wonderful arty hand-drawn puzzle game for her as a gift. She soaked up ‘the love’. She is ten, double digits for the rest of her life. And a cracking, special girl, much adored. Here’s to you, chiquita!

4) We are off to clinic tomorrow, to sort out Manky’s sites. Lordy. We are feeling brave and resolute. As I say, the sun is shining. We have raised the nighttime insulin to combat the growth hormone highs which have persisted pretty much constantly now for three weeks. Perhaps soon we can get a night’s sleep! The sun is shining.

Til when!

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Hello everyone! 

I’m at last in front of an actual computer to write this (get ready for nice colours). The sun continues to shine — and we had a fabulous break. Yay!

Here’s what went well:

1) LOTS of good numbers, even with at least three days of fairly constant walking/hiking/splashing in cold lakes. (Thank you, not for the first time, the team that made temp basals. A godsend. For half of one day, we put E on a 0% temp basal, eg NO insulin dripping in. And for one night, we put him on 50%, because of exercise. All complete guesses. BUT THEY WORKED!)

2) One, count it, ONE hypo in a week. Out of routine, LOTS of cake, lots of guessing carb. 

3) Only one day of inexplicable highs: all day in double figures. Oh well. We just pumped the insulin in, put him on a 120% temp basal, and by midnight he was down again. Growth?

4) Both of my children seemed to grow daily while away. Like plants in the spring with sunshine and showers. I kept thinking they were standing on tip-toe. It was incredibly peculiar. E is now clearly taller than me. His eyes are at my forehead. When he throws his arm around me, I’m like his little sister. Eek.

***

The best day for me was our first real day of walking. We had a close friend staying, and chose Cat Bells to show her and climb with her. We’ve done it twice before, before diagnosis. It was a gloriously sunny day. The way was crowded, but everyone was in good spirits. One of the joys of Cat Bells is the height gained so quickly, and within minutes we were treated to breathtaking views of Derwent Water, Bassenthwaite etc. As we climbed, the view just opened out more and more, til at the top of course it was 360 degrees of mountains and lakes. The weather was perfect: sunshine, not too hot, no wind (even on the tops!). 

It was the longest walk we’d tried since diagnosis. The only hitch had been starting high — a forgotten honey on the toast dose! — but with insulin in to correct, and with the hard slog, E dropped from 17 mmols to 6 mmols in 20 minutes! We then put him on a 0% temp basal for the whole walk, and gradually raised it through the evening. No hypos. No highs. More cake. 

We all got a little sun, and look about ten times healthier than we have in months I feel.

I also feel that we can do anything now!

I know we can’t. Without lots of planning and thought. And without lots of intervening low times. But the relief of being able to do this without panic, without short term or long term danger is intense. 

The relief of being able to enjoy something, really revel in it, without the tight knot of worry or fear… is an amazing feeling.

***

Okay amongst the small things that didn’t go well is a distinct lack of photographs taken by me! Argh! Obviously delirious with joy at our successes…However, in my search for Cat Bells I have discovered a fabulous site: Striding Edge. Absolutely brilliant walks and photos of one of our favourite places in the world (so far!). Nearly 25 years later and we have not tired of it.

Here’s one of the site’s photos of the walk to Cat Bells. It shows a rather busy, sunny time, which is just what we had. A bit of a party atmosphere, actually! Enjoy.

 

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

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

It’s incredible what you can get excited about. What anyone, let’s face it, can get excited about.

Like, say, blood glucose meters….

Oh yes.

Since diagnosis, E has used the Optium Exceed. A great meter. Good case, all contained. Accurate and quick. Awful flimsy finger pricker though, and TONS of clinical waste in the form of used lancets, little strips with blood on the ends of them, and all that foil from the strips…So, comfortable, easy to use — but has its moments.

You may remember my excitement over picking up the new Accu-Chek Roche Mobile meter in February. Ah, the promise of a new day! No clinical waste, solid finger pricker, no strips or lancets floating about the place.

How I wish that had worked out. Alas — no. It doesn’t work for E. And this is because: a) it’s noisy and b) it throws error messages too often. And once that happens, you have to close the machine, open it again, start the whole process…and by that point the blood is dry on your finger and you’re re-pricking and everything… His theory is that you get ‘one go’ at dabbing the blood onto the strip — and if you miss that one dab, or it’s not quite enough right then — you are stuck. It throws an error and you’re starting over…The thing about the Optium is that you can keep trying to get blood on the little strip end for quite a while before it dries out or times out…And this is useful. Believe me, how I know this…after dozens of bleary-eyed finger pricks at 3am, when I try several times to get the thing to register enough blood and not to have to prick his finger AGAIN.

Sigh.

Which brings me to what we’re waiting for at the moment…A Bayer Contour USB!

This one is sort of exciting for two very clear reasons: 1) I was approached to review it, so feel all flattered (along with Becky over on Instructions Not Included, I might add!) and interested and 2) it has a direct USB link (no cables) to download software and readings etc that WORKS ON AN APPLE MAC!

Yes, you heard me right. for the first time ever. This might be our saviour.

As you know, OH enters blood sugars into our spreadsheet every two days or so, with all kinds of other info: exercise, how the insulin was dispensed, at what rates etc… And we get coloured blood sugar numbers, which I replicate on this blog as you know, and which help us to spot patterns…

Well the Bayer Contour USB meter downloads with the same colours! Oh my gosh! It must be karma!

***
Saying that, the damn thing has yet to be actually delivered. They have tried TWICE at 8.30 am, when we are all out delivering children, going to the gym, or heading to work.

I’ve just rung today to try to get it re-delivered to my office tomorrow morning.

So we look forward to it. OH and I are hoping for a lightening of the load. E is more equivocal. He has certain requirements, understandably. And if it’s: a) too bulky b) too loud c) not reliable or d) fiddly — it’s a goner, whatever we think. And quite rightly too I reckon.

Anyway, will keep you informed! At least it’s a new toy.

AND the sun is out. Spring is well on the way.

 

from kiyong's blog of creative pursuits

It’s just been ONE OF THOSE WEEKS. I don’t know what happens: everything lined up like clockwork. You keep going. You do your stuff. Have meetings. Ferry children. Deliver presentations. Teach. Mark. 

(AND manage to meet with a friend or two — hurray! Though what they thought of this wild-eyed woman sitting across from them, who knows…)

But it’s the dead end of winter, and everywhere you go people are complaining: it’s freezing. The biting cold wind. You’re complaining too: I’m shattered.

The children are complaining: you’re never home! I’m stressed! I’m too tired! 

Everybody wakes up and goes to bed looking wan.

So I hit Thursday and sort of collapse. Collapse a bit more yesterday. To where I physically ache, can hardly move around the house. 

Not illness. Just sheer flipping exhaustion.

***

This morning however when I let the cats out, I notice the air has turned. That edge of spring. And like some kind of underground bulb myself, I can begin to feel the lure of the garden, the promised warmth, despite how overgrown and wet and messy it is right now. I see outside the pot at the base of our garden wall suddenly has some colour: of course, I’d forgotten in the grey of the long winter that purple crocuses emerge there, followed in April by the ink-splattered looking leaves of the wild orchid that planted itself there seven years ago. I never move the pot. Never do anything but pluck the old stems out at the very last minute. I daren’t! And am rewarded in time by the appearance of the primeval-seeming leaves…

***

Meanwhile, in the house of blood sugar levels, things are somewhat better. We have two theories for the huge run of lows (in addition to the performance-equals-lots-of-glucose needed theory from the week before!) last week:

1) site change for the infusion set. Greater absorption across the board?

2) pancreas spluttering. There is growing research to show that if there is good blood sugar control in early diagnosis, this can seem to preserve some beta cell (insulin producing) function. We have been lucky with this good control (and received good support early) — and some of the price paid may be an irregular production of said insulin. 

However you slice it, it’s a game played in hindsight. Sigh. The set changed again on Wednesday, and since then still less insulin has been needed, but not *quite* as less, if that makes sense.

So all the basals are re-set, the insulin lowered across the board…and yesterday E ran slightly high. Of course. In the 8’s and 9’s as opposed to where he is supposed to be, which would be in the 5’s, 6’s and 7’s.

If the same thing happens today, we will tweak down just a tad, and hope this doesn’t send him crashing… It feels a relief however for him not to be having hypo after hypo, and suffering from that kind of wipe-out.

He’s just suffering from the usual pooped-ness now, along with everyone else! Sleeping as I write this…

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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Disclaimer

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