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Upon arriving home, we knew for sure that Cleo was expecting. She is round. Eating like a horse. And there are kittens in there! Moving around like crazy.

She is due sometime after 21 August (three days). We are in a bit of a lather.

First time grandmother, I have taken to it with typical obsession. She has not one, but three firm ‘nest’ alternatives now. Which have been alternately lined with towels, fleece and now finally newspaper in the last week. She has not so far chosen any of them. I pray her eventual stopping place will not be a) under a double bed or b) on a window sill, which to be honest has been her favoured place these last ten days. A windowsill! Imagine this. Or not.

Establishing nests for her also seems to have led me into my own nest building: I have been (again rather obsessively) clearing out cupboards and wardrobes. It’s a case of serious overdrive. You could be forgiven for thinking we were getting ready to either move or adopt a child. We have so far filled about ten black bags with STUFF. Only two more sets of clothes and two more chests of drawers to go, and then we will have been through all storage items in the house. Preparing for babies, moi?!

OH says that daughter M would do best to be at some distance when she falls pregnant (one hopes, years from now!). I think he may be right. Meanwhile, I am trying to catch languishing Cleo long enough to trim around her teats (yes, she says defensively, this is actually done, we are informed by the breeder!) so that the kittens (kittens! kittens!) can find their milk…

Sigh.

Cleo looking altogether more relaxed than I feel!

***

On other fronts, we did have an absolutely wonderful time: we read and swam, read and swam. But also saw a number of deep South of France cities we hadn’t before: Avignon, Orange, Arles. Of these, Arles was stupendous. The kind of working, ancient town — with a few Roman remains thrown in — that you’d just like to get inside of. This is what I love about imbedded history: yes, there are tickets to buy and audio books to listen to. Yes there are tourists. Of a sort. But the life of the city just carries on around it. People drive around the Roman amphitheatre, walk through it on the way to work. It’s incredible. And heartening. We also went back to Uzes and the Pont du Gard, two favourite spots which lived up to our memories of them. Stunning, Provencal, and somehow liberating.

ANYWAY.

Number wise things were just fabulous: after the first couple of days of temp basals, E’s insulin levels seemed to settle rather miraculously. We began not to put him on any temps, he hardly had any lows, played in the pool a great deal, walked a great deal… And, you guessed it, GREW like a beanpole. By the end of the holiday we realised his needs had gone up overall, which is why all the exercise etc had not sent him crashing over and over.

And you guessed it: on the way back in the car, his numbers began to soar. Where they stayed, enduring the battle of the 200% temp plus corrections, for about 4 days. Like a plant, with a little sun and water, he had shot up. Had he been less active, we would have had to increase his insulin by about 30%. As it was, we had to do it when we got back.

We figure he grew about an inch in that two weeks. No kidding. He came downstairs the morning after our return saying his eyes were at a different level in the mirror! My lord!

No wonder we have been running to keep up.

So OH and I have not had an unbroken night in four weeks now. We are still trying to get night basals right — he keeps being 12-14 mmols at 2 or 3 am, which is sort of incredible. We then correct him and he’s usually (but not always) okay in the morning. Clearly he’s doing all his growing at night! This morning he was 2.9mmols however, too low, so it’s just that middle of the night window that needs looking at again. We’ve already raised it by two increments since our return.

Oh well. We will get there. Until something else changes.

We’ve also had to change his insulin sensitivity on the pump, or his correction ratio (eg how many mmols can one unit of insulin be expected to lower him?). It used to be 1 unit insulin to 4 mmols in the daytime (high, but he’s quite sensitive), and 1 unit to 5 mmols in the nighttime. For the first four days back at home, we kept finding corrections less effective, lowering him only a little. After setting the basals on 110-120% temp all day and night, and still corrections were not doing it, we figured it wasn’t just a question of basal adjustment. We therefore changed his correction ratio to 1:3mmols for the day, and 1:4mmols for the night. The nighttime one still seems hit and miss (eg didn’t bring him down from bedtime to 2am, and brought him down too much this morning) — but we’ll have to tackle this again through basal rates, as I say…

Endless.

But he’s  three inches taller than me now. Since Christmas. He looks like a tall person in a queue of people. He is beginning to measure up to his father. Which is some good growing, type 1 diabetes aside. Yay!

***

And I haven’t even mentioned daughter M. Who grew like a plant as well, and was the only one in the family who turned the colour of a nut effortlessly and has French style, with scarves and tank tops and gladiator sandals and sunglasses, like nothing I’ve ever seen. Who is only now four inches shorter than me. Who will pass me in height in oh, two years or less. And I will be the short, comparatively squat one in the family. It’s alarming. Really wild. I always thought I was tall. 5’7″ is pretty tall for a woman. Isn’t it? Isn’t it?!

But I’m surrounded by lean, soaring, willowy folks. Of whom I’m so proud. Sniff.

Cleo, E and M. Must be something in the water.

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Well, it happens all the time. Only each time, you think: I can’t do this. Anymore.

But you do. Because that’s what you do. That’s what humans do, every which way and in all states of mind and body.

We have the capacity to start again, whether that means picking up where we left off, like a thread lost — or whether we must indeed re-build from the ground up, after catastrophe or death.

All these things have come my way in the last 24 hours, one way or another. My stuff, but stuff too surrounding people I care very much about.

1) in a sudden and unexpected shift, the CGM now seems to be serving a purpose. Several times a day E looks at it when he wonders what he is. Saves him two or three finger pricks a day. Looks at it in lessons, out of interest and for reassurance, he says. He says, it’s worth it already. And I’m stunned. And so we start to look up, start again.

2) one of my very dearest friends has undergone a freak event at her old childhood home in the States: a tiny tornado destroyed it, when the whole family was sitting at dinner. No one was injured, but how do you know where to start? I guess the answer is, you start again. She knows I’m thinking of her, but in case she forgets: I am.

3) and a long-time friend and colleague of OH died peacefully two nights ago. Perhaps mercifully quickly, given the situation. But we feel for his family, and thank him for his friendship and real gentleness in life.

So. It’s been a time to reflect. On what is possible. How hard sometimes it is to get there, and to know this, not to speak of just plain carry on. But here we are.

Today it has been cloudy mostly, warm. And this evening, the sun manages to break through. Time to water the pots. You have to work at it everyday, but the rewards are of course flowers.

Pots in my garden

My hanging basket!

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

It’s been a shock to go from my peaceful mornings at the hut to a life punctuated by the fast train from Kent to St Pancras, but so it has been: external examining at Norwich University College of the Arts for three days, home examining at my own, then to York for a NAWE meeting, then three more days examining at my own institution again.

Ack. Meanwhile the sun has mostly shone, despite the cool wind. Like life of course. Mostly sunny, a more or less constant cold wind. That you just learn to get used to.

Three items for report (how many meeting have I been in the last ten days, you ask?!):

1) desperate cat Cleo is going on a singles’ holiday this weekend. Eg we hope for kittens in late August! Watch this space. The relief will be mutual, to be blunt. The poor girl spends some of every evening trying to settle in the bathroom, with bed, tray and food. Poor thing. Poor us. At its worst, we can’t hear ourselves speak. And her brother hisses at her all the time… Bring on some peace (and for her, satisfaction?!).

2) the Tooth Fairy has only just recovered from being in deep doo doos in our house. Not one, but two teeth languished under daughter M’s pillow. For a WEEK! I know, someone shoot that fairy. But the worst of it has been M’s eventual understanding, once the glowering passed. I know the tooth fairy has been very busy, she says. Eek, I can’t stand the guilt! Anyway, now the teeth are in the fairy’s castle, and M has not only £2, but a rather glittery bracelet (hopefully not made out of teeth…).

3) E’s numbers have been generally better. Again, some weird and wonderful nights: a drop from 8mmols to 1.8mmols once (yikes!), and another of a random rise… But these weirdnesses aside, things have eased. We are off to clinic for CGM instruction today. Another matter for report….!

***

Finally, at the gym yesterday (for the first time in two weeks…really, thank goodness the place doesn’t have cameras. I don’t think it does, anyway…), I encountered one of my favourite songs of the moment, by Jolie Holland. She is, if anyone is still around from my other blog, one of my favourite artists, but this song…I don’t know. I listened and thought you know, life is random. Life is harrying and harried. And is all about risk, about doing what you don’t and can’t know. And sometimes it works out, and sometimes it doesn’t. On Jolie Holland’s website, it says this about the song:

“Palmyra” is a prayer for the broken-hearted and traumatized, both individuals and communities. The first half paints a picture a love-lorn traveler pulling herself back together after a disastrous affair. The second half is lovingly and respectfully dedicated to the hard-pressed people of New Orleans’ Ninth Ward, hallowed estuary of some of the finest music the world has ever witnessed.

(But the real place to check her out is probably her myspace page, in which I have just spent several happy minutes…)

For me, the song’s somehow about strength. My OH and I met over 25 years ago. We married 22 years ago a week from tomorrow. He is my soul mate and best friend. And one of the very few people in my life that I haven’t had to leave for some reason, whom I haven’t left and hasn’t left me. A gift in my life I never really thought my life would hold or be able to hold. How very very lucky and blessed we are in this way. Just wanted to say that. He got the album this song comes from for me. He’s not mad on the music, but knows that I am, and lets me dance and sing to it in the kitchen. Even while he’s making dinner. What a guy.

After barely three days’ respite, little girl cat Cleo is on heat — AGAIN. We are gritting our teeth. She is doing something altogether different, but no doubt just as taxing. About another two weeks of this, all being well. We hope for another little mini-break for her. Then maybe making babies. And everyone will be happier… there is too much hissing in the house now, and not just from her brother Schubert, who is fed up to the eye teeth with all her moaning and constant IN YOUR FACE – ness. We keep putting her in the bathroom with a litter tray, food, drink and a bed. Her boudoir, in which she can recline. Fat chance.

AND: a day when E has helped me make a postcard for my hut poems. Okay, he’s done the whole thing (:-)). And here it is, the front image, and the back poem. Splendid job.

Hut postcard

(Sorry, on my computer you need to click once to go to some page in space that says ‘Hut postcard’, then click on that and then it finally downloads. Why? Who knows.)

So we go for a milkshake from the dreaded McD’s. Very unusual. Get a medium milkshake. Read the carb content from the handy placemat. Hurray, McD! Says 70g CHO. Sheesh! We think: a load of carb. Sounds TOO high. Settle on 55g CHO, and agree to pick up the pieces later if he goes sky-high. Two hours later he’s a steady 5.8mmols… Hmm… And still hasn’t gone higher.

So we wonder: Mr McD, what you playin’ at?! If we’d done the full 70g, it would have been hypo city! Oh dear.

Just another day in the land of managing diabetes. And life. And getting through both. For the moment!

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

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.