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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.

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I’m willing to accept that there may be such a thing as being too alert to your cat. So let me state that right off.

However, the last few days with Cleo and the kittens have been utterly fascinating, and make me realise (all over again) how all animals have to negotiate — whether instinctively or deliberately — the development and independence of their offspring. How we may think one thing, but encourage another. How we may wave goodbye and then burst into tears. Etc.

Here’s the thing: two nights ago I was up for four hours trying to settle the kittens with Cleo. She had suddenly taken it into her head that they needed moving. They weren’t safe. Perhaps it was simply that the other basket was too small — which it was. They were like sardines in there.

Anyway, that evening I twice came to the door of the playroom to find her next to a baby with a wet scruff. I deduced (!) that she was trying to move them, and if the scratching UNDER our bed earlier had been anything to go by, she was planning to take them there, where they could not be even slightly contained… Sigh. So I shut the door. At 4am she would not be quiet. She called and called and called and called. She got out and ate. Came back and called. Searched and searched for someplace to put them.

Sigh. I was struck by an idea. I righted a box we had in the room, put a blue blanket in it, and moved the kittens in. I know she likes the blanket. The kittens were HUNGRY. She climbed in and fed. Phew, I thought. Went back to bed. 5am.

Within the hour she was crying again, clearly trying to tell me something. She was out of the box. She didn’t like it. She kept looking from the kittens to me and back again, like do something!

I had another idea. It was an open box, though a table ran along 2 feet above it. I knew, for some reason, that she wanted more privacy. So I took another fleece, and pegged it to the table (under the guinea pig cage, mind you…stay with me), and draped it like a tent around the box.

Hmm….she checked it out. She quite liked it. She purred. She climbed in. And the deed was done.

Now, what’s been interesting from this is that the move to the bigger box meant that for another day the kittens didn’t venture out. They had more room, and maybe didn’t need to. They kind of poked their heads out of the end, then most of the time Cleo would make noises and literally yank them back: your bottom needs cleaning. Etc.

She wasn’t ready for them to go. And they probably weren’t quite ready to go.

Because last evening and today, she’s done something completely different. She has gone into the room and called them OUT of the box. It’s hysterical. Their little heads poke out and they fight to get out of the box, getting stuck, and they tumble around her. She bats them a bit, bites their ears, lets them suckle a little. They stagger about quite happily and explore. After a few minutes, she stands up and walks into the box. And gradually they follow her in, and everyone settles down.

It’s so simple. She knew what was best. She really did. She knew that if she had someplace different for them, they wouldn’t keep wandering out of the box and getting a bit lost before she thought they were ready. She knew when they were strong enough, and encouraged them to get going, to play.

Wow. When the children were little, I always made decisions about ‘what next’ based on what I would call my gut instinct. But I didn’t know that it probably really is instinct, in the flesh. It’s a real, palpable and despite our evolution, necessary thing which pushes us forward, helps development and survival. At each turn — sending my eight year old to get a cup of water from the counter, sending my eleven year old up the hill to buy some bread… or even standing in front of our one year old (we’ve all done it!) holding out our arms (that’s right, walk to mummy) — at each turn, something could go horribly wrong. You dream about everything that could go wrong. Like I’ve seen in Cleo’s eyes — they’ve gone too far! make them come back! But you know it’s your job to say hey come out here. The world is good. The world is full of new things. There’s a bit of it that might be dangerous, yes, and sometimes stuff happens. Don’t I just know that stuff happens. Better to learn to walk and run and play.

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!

Things continue to be hither and thither — hence my struggle to post! Apologies. What always then happens of course is an overwhelming urge to say EVERYTHING.

Not possible. So a quick run through: we think Cleo the cat is with kitten! Her brother is able to tolerate her, phew. We had a party for 30 people last week, and the sun managed to shine throughout! Phew. I’ve taught some year 6 (11 yr old) and today year 5 (10 yr old) school children poetry these last few days too. Really excellent fun. Phew! I delivered a paper to the Poetry and Voice conference at University of Chichester over the weekend. On how different sorts of writing have served different purposes since my son’s diagnosis — and on how the beach hut poems came about. Went well I think, and the whole conference was a stimulating one. Phew!

Not so phew: daughter M, six weeks after cracking her cocyxx in a rounders match (seriously painful, missed two days of school), then jammed her ring finger on her, yes, fingering hand…. So has had to re-schedule her violin exam. Oh dear. Very painful, swollen joint. Little delicate hands. Sniff!

Not so phew too: battles with lows. The heat seems to have had the generalised effect of lowering E’s insulin needs, so last week we had several evenings of unfortunately several hours of dragging around in the 3’s and 4’s… Even with the pump on 0%, eg actually off. It was extraordinarily wearing for him, and a I don’t mind admitting that one night it was a little scary: no insulin going in, already treated two hypos, and gee, 15 minutes later he’s still on 2.5mmols... Disconcerting. But we got up I think half a dozen times that night, and by morning he was okay.

Sigh. Then after 3 nights of going high from too low a temp basal (too little insulin) in the day — we think we’ve sort of cracked it. For now! 90% temp basal in the day, plus 90% of the usual carb counting/ratios. Turn off temp in early evening to stabilise for the night. Unless he’s exercised of course…! In which case turn it to 95%.

Assuming he remembers that he’s exercised.

Assuming that we remember what he’s told us. And that we all don’t crash out on the sofa from SHEER EXHAUSTION while watching the World Cup, where England did SO BADLY. Oh dear.

Did I mention that on the way back from Chichester the car sprung a diesel leak and I ran out of fuel while passing a truck? Scary.

And had to wait on the motorway verge 10 miles from home. Never, ever nice, traffic whipping past at 80mph. I took my linen trousers and sparkly flip flops into the nettles and thorns, up the bank, I can tell you!

And did I mention that because one car is in the shop I did all the driving this morning: child to school, OH to work. And oh, deliver a testing kit to the OTHER child across town, because accidentally forgotten….?!

But we’re here. And we’re okay. As long as we keep our juggling hands free.

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.

 

My friend’s son’s diagnosis of course is still at the top of my mind. And I’m struck by something her message to me yesterday said: I know it will be like trying to carry water in my hands.

Indeed.

This seems a particularly apt way of describing the first feelings, like nothing stays with you for long. Like you start off on a walk, with your hands full of the stuff, then you take three steps and they are empty. So you go back and start again.

In our house we use the pedaling a bike slowly uphill metaphor. I think of how the front wheel twists and turns in this situation, how you just about stay on. This is how we feel. Most of the time.

And in another entry, the running for the bus one seemed best: you chase after, then when you finally get on it, you realise you should be on the one way over there, on that road.

***

These are all quite depressing ones, really. There must be some moments of relief. I’m thinking of my friend H here and her son. What to tell them?

What are the moments of your or your friend’s/child’s care like? What images occur to you in the middle of the night, or in the day on your own, or when you think of the people you love? Have the images and metaphors changed over time, or like us, do you have different ones for different times?

I’m just curious. Because I know that thinking through metaphors somehow helps me cope. It helps me express and articulate these complicated sets of feelings as nothing else can. I feel like there I’ve said it. For the moment, anyway!

***

On the home front, after a few days of highs and raised temp basals (more insulin dripping in), we realise that we are back where we started after the last unexplained round of lows. Sigh. Spluttering pancreas, growth spurt, infusion set site? Who knows. Two mornings now of finally waking in target. 

What would be the metaphor for this?! Two steps forward, one step back? No, that’s a cliche, and different.

How about following an overgrown path until you reach a sort of clearing. You take a breath, but then realise that the path continues out the other side, and that you must follow it. It’s a bit of a slog, lots of cutting back and hacking through. But you do it. When you arrive a the next clearing, after a few minutes it dawns on you. Yes, it looks familiar. You were here before, only now you’re approaching from another angle.

***

All being well I will update in the next couple of days about the school’s talk with M’s year group, the Bayer Contour USB. And maybe daffodils.

I was going to write something completely different today. Yesterday was my birthday, and — despite E running consistently high now for two days, irritating but welcome growth spurt we think — things have been good: he took his Grade 7 piano exam and it went well. Daughter M won a poetry competition at her school — and played well in a concert last night.

***

Yet. This morning I open my work emails to find one from an ex-student and long-standing friend and colleague: her 12 year old son is in hospital, diagnosed yesterday with type 1 diabetes.

Aside from being heartbroken for her — such a blow, just a blow for her and her family — I was overrun by things I wanted to tell her. This is where I started:

 
Make sure he gets onto MDI — multi injections. Then say you know all about pumps and you want to get on the list. Ask to be taught carb counting as soon as possible.
 
DO NOT let them tell you to bring his numbers down mega-slow. It will take a few days, but sitting around 13+ is NOT right. Keep on top of changes to the amount of insulin so that he comes down in few days. We sat with high numbers for several weeks.
 
DO NOT let them tell you that he can’t eat this, and can’t eat that. We received advice that was more suited to type 2 when E was diagnosed, and it was devastating. Your son can eat a normal healthy diet, with treats etc. He can only really do this when you learn to carb count — so that you can always cover what he is eating with insulin.. Things like brown bread or brown pasta being better is NONSENSE. In fact these are harder to dose with type 1, because they take longer to digest and therefore you can’t be sure that the insulin with the meal has covered them. What you DO need to watch while on MDI are snacks without injecting — these will send his blood sugar up quickly. You need to keep them small or carb free: small packet of biscuits — or better, cold meats and cheese, which have no carb. We can talk more about this later.
 
Also, I would advise regularly testing before a meal and if you can bear to, 2.5 hours after as well. This will help you quickly learn how his long term insulin (Levermir) is working (before the meal) AND how the short-term (Novorapid) is working (after the meal). When E was diagnosed we were only told to test after eating — and this was patently outdated and darn near useless. We had no idea what was happening with his blood sugars for several weeks.
 
Get Lucozade in the house — the fizzy stuff, if he likes it. Or small cans of coke. Glucose tablets and jelly babies work well, but fizzy is faster. Also small cartons of apple juice work very well. Get 15g carb snacks for after hypos: pre-packed small packets of biscuits like maryland choc chip or mcvitties digestives. Spread these things around the house — in his room, in your cars, in the kitchen. He will come home with a lot of kit. Empty out a cupboard in the kitchen and keep everything together.
 
The team at [our local hospital] are very nice, but not always up to the minute. Get yourself onto Children with Diabetes UK AND join the Diabetes Support Forum…. Go to the Parents’ section and put yourself on it. You will find a huge amount of support.
 
Oh dammit, H. It’s a hard road. I’m so sorry.
 
Call me when/if you can. I’m here.
 
Sorry if this is information overload. It will make sense very quickly though, and I wanted to tell you some things.
 
I’m so upset for you and your family. It will get much better, but…cry all you like. I cried for weeks and weeks and months. And we still cry now.
 
xxoo Patricia
***
That’s really all I want to say today. The same age as E at diagnosis. She said in her note that she kept up with this blog. And that she used it to learn some things before they went to the doctor’s with what they suspected.
 
In my head today I am re-running the scenes of diagnosis, and the horrible sense that we thought we were learning when in fact we knew so little. For so long T1 seemed difficult, but doable once we ‘figured it out’. The real sinking heart has come over a number of months, even a year, with the realisation that we will never figure it out. And that some of the initial information we received was inaccurate, plain mis-leading and patronising.
 
Another time I’ll make a clearer list of what I would have found helpful at diagnosis. It’s so confusing. But for now, well. I wish her luck, and wish, as I so often do, that I could just take this away from our beautiful children.

As I’ve mentioned, one of the most remarkable side-effects of all this diabetes-debacle (DD for short!), is the straight-to-the-heart experience and belief in the value of connections. Having diabetes and being a carer of someone with diabetes can be tremendously, tremendously isolating. It’s invisible. At a glance everything seems okay. But underneath, behind the scenes, there is necessarily constant, stressful, vigilance.

Being connected with people who DO understand is as important as setting out your stall and saying hey this is what it’s like to people who DON’T understand (yet!).

So. As a start, my blogroll in the sidebar is now beginning to reflect the incredible range and commitment and energy of some d-bloggers. Check these folks out.

I’m picking up a few more through Twitter…A surprisingly interesting venture, actually. Aside from the haiku-like nature of the entries, which I find inherently pleasing (surprise, surprise), connections have been made very quickly, and I now have people contacting me from all over the world with diabetes-led tweets and blogs… One entry re-tweeted (ah, the lingo!) to me yesterday, about the idea of ‘normal’ in a diabetes context, is just a FAB post.

***
Update on other fronts: E has had a run of great numbers, and we’ve had three nights of sleep! Yay. Just in the nick of time. OH is down with a draggy cold thing, M is home from school with same, and I can feel my throat tickling…

The peculiar thing is two days of an odd number, very high, at 4pm. What’s going on?! This time of day is an almost guarantee HYPO time for E, if we don’t get it just right. He has ALWAYS been this way. So three days ago he was 14.7mmols (big time YELLOW number, ‘hyper’), and two days ago 16mmols (double ergh). Checked that he had remembered to bolus (the insulin with the food) for lunch, and that his/our carb counting was okay. Yes to both. So we adjusted both basal (drip feed insulin) and the lunch ratio (the proportion of insulin to grams of carb). It’s worth saying here that all insulin levels, whether basal or bolus (ratio-based), differs person to person, time of day to time of day, depending on the body and its metabolism etc. Amounts of insulin also change according to things like temperature and time of life/hormones…. Anyway, E’s ratio at lunch is usually 1 unit of insulin for every 9 grams of carb (1:9). We lowered it to 1:8, so that he would get more insulin for his food intake.

So it follows in the upside-down world of diabetes that yesterday at that time he’s plummeted to 4.1 (RED number) and feeling rough with being low. Sigh. The irony of it! We will keep things as they are for today, and if he’s low again, slowly pull back and reduce the insulin once again… It’s a sensitive time of day for him, clearly…

***
Also, for those of you with a fondness for rodents like my daughter, Mimi and Peaches are STILL at the vet’s. This morning however we have good news: Mimi is now very perky, running around, and we hope to have them home by the weekend.

Daughter M is withholding excitement and hope thus far though…This is something which has developed from E’s diagnosis, and is, I’m sure, inevitable in life.

And that is: the knowledge that life as you know it can turn on a dime. That in truth, anything can happen. She knows this deep down in a way that I wish she didn’t. E’s diagnosis completely unravelled her — this is a girl who has always dreaded leaving last year’s teacher, who still, at nine years old, visits her nursery school. Her loves and loyalties are deep and fierce and admirable, and her security comes from physical connection. When her brother’s life changed, her world view did too. She experienced — with an articulacy far beyond her years — and felt — every day, for months — a grief for what she thought the shape of her life was and always would be, and now wasn’t. It’s painful for me to think about. But that’s what happens.

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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Disclaimer

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