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It continues to be all-go in our household. There are times when I feel like a drill sergeant. Sigh. And I’m sure my family would say the same (!).

However. Good news from last week’s clinic appointment is that E’s HbA1c is once again back down to below 7%. This is approaching the high end of ‘normal’ (I love this word – NOT. It means here the high end of a non-diabetic person’s HbA1c). SO this is all good news, and confirms our suspicions that the vast majority of the blip last time was down to the dodgy sets, the missed boluses, and some plain wacky numbers. Two weeks later and those blips have disappeared more into his ‘blood history’, the measurement is 50% from the last month, and the proof is in the pudding. As it were.

It’s a wonderful clinic. Sensors for the CGM are arriving tomorrow, thanks to their help. The doctors and DSNs are open, kind, congratulatory, and we always come away having learned something — or at least with something to think about. This is incredibly rare nowadays for us: diabetes is such an individual condition, that what works for one may not work for another, and the pattern of x may not be the pattern of y. Not to speak of how things can vary day to day. So a new thought is, unfortunately, not usually one we haven’t already thought of. Nevertheless, in this clinic (our pump one, not local) we come away with food for thought. For instance: one of the doctors picked up what might be a pattern: E tends to have a hypo (below 4mmols), about 8 hours after changing to a new infusion set.

This may be nothing. But it may be something. What we would do about it is place him on a slightly lower rate of 95% of his insulin for that time. Maybe it will work? One of the lows was a severe low — the ol’ favourite, 1.8mmols of ten days ago. Ack. Each time, we count our blessings that he seems to weather these well. I am touching wood like mad for luck, but so far even these lows have not caused him to lose consciousness, fit or even become particularly disoriented. As I say, I realise we have been lucky.

And speaking of temp basals, it’s been ‘low insulin’ city in our neck of the woods the last two weekends. E is keen to earn money, so has been doing a lot of gardening work: sweeping the drive, weeding, hauling cut down branches to the bonfire. Etc. Last weekend he went onto a 50% temp basal to try to account for the exercise, and still had four or five hypos (I know, I know)… This weekend we tried a different approach. On Saturday, a shedload of hypos. One after the other. We reduced him to 0% for at least half the day. By evening he was stable again, though on 95% through the night, again to account for the exercise.

On Sunday however, we whacked on a low temp basal (20%) AND under-carbed his food. For instance: scampi and potatoes plus veg weighed out and added up to about 80g CHO. He bolused for 60g, thus receiving about 75% of his ‘usual’ dose.

Interestingly, this seemed to work (aside from two hypos in the morning, before we cottoned onto this new idea, sigh!), combined with the temp basal. We did the same for the evening meal — risotto, a slightly awkward one, that he normally doses at 25/75% (eg 25% up front, 75% spread out) over 7 hours. Again, no hypo.

What’s been useful to think through is that it makes a kind of sense that if the body is sensitive to insulin generally at a certain time, then it will also be sensitive in all instances: so any insulin going in during a sensitive time is bound to lower the blood sugar more than is desirable — whether it’s a ‘long-acting’ basal insulin, or a ‘short-acting’ bolus one.

This is not something anyone has ever mentioned to us. I’m mentioning it here, and will do so on the forum. But it makes sense, and worked.

Will it work the next time, however?! Ah, who knows….


The reason we have been so happy to let E work like a dog (and yes, I have a list for him after school this week!), is that we have about 30 people for dinner on Thursday. Eek. Spare a thought. The GREAT news is that the weather looks very promising: hot and sunny. (And DON’T even mention the possibility of a thunderstorm to break it, as is the tendency is this part of the country! Just keep it to yourself. Touch wood….)

Last year at the same party E had been on the pump for less than a month. We had lentils. And it sent his numbers all over the shop, being low GI. That would be very unlikely to happen this time. Incredible the distance you travel. We have travelled.

Touch wood.

copyright Tim Haynes

Well as half term approaches, so my days at the hut are numbered. Sigh. Being there has been an eye-opener. A gift. And a lesson. Namely: the more time I have, the more head space, the more I write.

This probably seems a simple equation. If x = y, then 2x = 2y.

Not exactly, however. In reality, if time x requires me to sit and write RIGHT THEN, or I won’t get anything done for another week, then yes, I might produce y.

It’s an eked out creative existence, though, one put together *between* other things. I’m lucky, I can usually write something when I have even the tiniest slot of time. I’ve trained myself well!

What I did not anticipate was the exponential effect of doubling or even trebling x. And then adding another variable, let’s call it z. Now z is neither x (time) nor y (work produced), but in combination with x, z seems to have an incredible effect on y in any case.

Z is white space. Z is free fall. Z is nothingness. So if I were to include z in the equation like so: 3x + z = ?…I could only quantify it as zero. In which case it has no effect on the balance of things.

Ah, but it *does*.  This kind of equation for my time at the hut seems better: 3x + z = 3y + z. Where z can be ANYTHING. And even to look at, it expands the equation, it makes it open-ended, infinite, etc. And this expansion is partly what this feels like. Anything is possible.

Saying all this, I have the feeling that what I’m really talking about is trigonometry or even calculus, where equations are not worked out around equal signs, but around functions, or change. And then what you put in can have an exponential effect on the result.  Which is even closer to how I feel…. But I can’t remember anything of trigonometry, and passed college calculus by the skin of my teeth, so oh well.

Suffice it to say that z has entered my bloodstream now, and I will always be on the search for, and respect, the empty space and freedom z brings. It is invisible. And vital. And not a waste of time. So there.

Some more photos then from the last week or two, when suddenly it became summer. I became obsessed with my actual view through the hut window… Rothko-like I thought… and of course wrote a poem about it.

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


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Distance Travelled


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