To sleep: perchance to dream

I'm getting rather used to this nighttime netherworld I've been living in for the past week. In fact tonight I went right round to 3am before I needed to get up - we've organised ourselves into a shift rota and I only get called upon if R goes really low or else it's my turn to check - tonight he hasn't gone *that* low so the 3am check it was! Of course he was a little low then - 3.9mmols, only just a hypo but at 3am you're not going to leave it untreated until 6am when everyone begins to get up. So made him wake and drink some Lucozade then set my timer and waited the prescribed 15 minutes. Retested and he was 4.2mmols - a rise, yes, but not enough for me to think I can go back to bed now. More Lucozade and a Rice Krispies Square just to be on the safe side - normally this would be really over-treating a hypo but right now not much makes a dent in R's hypos. I'm waiting now for the timer to go off again.
I didn't need the alarm at 3am - I woke with five minutes to spare and I'm alert enough now to write this, in fact so far all night I've only hovered around the most shallow of dozes rather than dipping down into the soft folds of deep sleep. I feel very alert now but come 6am I'll feel as if I need to sleep for a hundred years. So far this week the longest I've slept in one go has been about 3 hours, any more would be a decadent and possibly dangerous luxury. I remember reading somewhere that you can survive for a couple of months without food, anything between 2 and 10 days without water and apparently about 10 days without sleep will kill you but after only three or four sleepless nights you'll begin to hallucinate, suffer mood swings and generally be unpleasant to be around.

Just did another test - he's dropped to 3.7mmols - so much for the Lucozade and Rice Krispies Square....He's had a mini can of Coke and I'll test again in 15 minutes. If that doesn't work I'll give him a whole bottle of Lucozade or maybe a honey sandwich made with white bread and no butter. All of this must be rotting his teeth...but it's keeping him alive.

So.....sleep. Who needs it?

Groundhog Day

Well after all the ups and downs of the last few weeks R had his stay in UCLH but by the time he was admitted to both our local hospital and UCLH his constant low blood sugar levels had come back up into a more normal range - typical!

After we finally came home from UCLH R's blood levels began to rise....and rise...and rise. It didn't seem to matter how much extra insulin we gave him, nothing shifted those levels from really high down to a more normal level. Until of course, just like before, he crashed and we've been battling low blood sugar levels (hypos) for the past three days and nights. The day time hypos are just about bearable - R can eat loads of high carb food like jelly beans, lucozade, cola, white bread - all of those are rapid acting - they get into the blood stream very quickly and are ideal for diabetics who are having a hypo. Things like chocolate - which used to be recommended for treating hypos are not the best thing to give because the fat content in the chocolate inhibits the absorption of the sugar and slows up the whole process which you really don't want if you're going lower.

So why was all of this happening to R?

Well he's probably still in the 'honeymoon' period with his diabetes - often after diagnosis when the pancreas has had a chance to recover from the overload a little bit it begins to work again for a short while but it tends to be short-lived and sometimes it can be more trouble than it's worth! That could be causing the hypos - R is injecting insulin and his own pancreas is producing some too - don't ever forget just how dangerous a drug insulin can be - that's why we've been up for the past three nights running trying to feed him with sugar to keep his blood levels out of the dangerous lows. How dangerous? Well... prolonged low blood sugar levels can cause seizures, brain damage and ultimately death. Yep, scary disease this one and there is no cure - insulin injections or an insulin infusion pump are just treatments.
What about those highs? The biggest culprit is growth hormone - he's almost 13 and on the verge of puberty, he hasn't started a growth spurt yet and boys, being boys, tend to grow until well into their late teens or even early twenties. So that means we could be battling highs for the next seven years.

Excuse me while I go and laugh hysterically. Lack of sleep, worry and sheer desperation living in this horrible twilight world of Type 1 adolescent diabetes turns parents grey and slightly unhinged.

The thing that angers me most of all - and I know I've said this before, so apologies - is that nothing we have done has caused this. Type 1 Diabetes is rather like the evil fairy who turns up at the christening and curses you all for no good reason. If I believed in karma I'd have to conclude that in a previous life I must have been one of Genghis Khan's henchmen.

And of course I had to cancel a class I was teaching this afternoon as I sit by the telephone waiting to hear from R's consultant about what to do next. I hate how this has come into our lives. The only upside is that we've met some wonderful people along the way....every cloud.

Having a breather

Events rather ran away with us last week - after those horrible nights of R being low for hours and hours we decided on Friday to see our GP. I'd been up with R from midnight to 6am, P had done the earlier shift until midnight, R hadn't slept at all and his blood hadn't risen above 5 despite all the glucose we'd been getting him to eat. The GP sent us to the local Children's Assessment Unit where we saw our old consultant - we sat with her and discussed the problem of his hypos and how we wanted things to move forward for about two hours. Finally with some brilliant advice from other parents of Children With Diabetes we insisted she contact UCLH - the hospital where R has been referred to for his diabetes care because we weren't satisfied with the care and support we'd received from our local team. The consultant did this but because it was Friday over the weekend there would be no more particular expertise than if we went to our local hospital and were transferred during the follow week. As we were all so tired this was our best option, so since Friday R has been in the local children's ward. I stayed two nights and his father stayed with him for two nights and one way or another he's never been left alone while there - my big fear was that well meaning medical staff who were largely ignorant of current diabetes practise might insist on a treatment that could well cause further problems.
We were lucky though - the nursing staff were brilliant and couldn't do enough for both R and I - even when he had a hypo yesterday afternoon and we had to chase him around the ward and then bribe him with money to take some Glucogel! Likewise, most of the doctors we met, once they'd heard what R has been going through they accepted that specialist knowledge was required and supported us as much as they could - one doctor spent hours over the weekend trying to contact various Endocrinologists up at UCLH so he could get some advice.
Only once, this morning actually, did we come across a doctor whose ideas about managing Type 1 Diabetes in children and adolescents were out of date and restrictive. Her plan - based upon reading his notes, not having talked to him or ever seen him before - was that carbohydrate counting and injecting insulin based upon what R was going to eat was useless for him as he couldn't manage it. Instead he ought to have three fixed doses of insulin each day and a restrictive diet.
Okay....why isn't that any good?
Firstly three fixed doses a day - that's an insulin mix which was the way all Type 1 diabetics were treated in the past. For some people it works extremely well but for most it's far from ideal. It requires a fixed diet - the same amount of carbohydrate each day, snacks at the same day and ideally the same level of activity each day. For many adults this can be ideal - only three injections and their diabetes is managed without it being intrusive to their lives. Unfortunately if you add growth hormone into the mix - which all children produce in large quantities, then put in P.E. lessons a couple of times a week, rugby practise and matches, weekends lazing around playing PS3 games and normal life for children. The fixed diet and fixed activity levels don't sound so good anymore.
Oh, and don't forget, some of those mixes are now so old-fashioned that the pharmaceutical companies are phasing them out in favour of modern treatments.
Secondly - carb counting too hard? No. There are plenty of books out there to help you count how many carbs are in a meal and there's even a brilliant iPhone/iPod app called Carbs and Cals - we use it almost every day. Once you've decided how many carbs are in your meal you work out how many units of insulin you need to inject to cover it depending on what ratio you use for that meal. Okay, I admit it, this bit can be complex....there is a wonderful blog post all about how complex this really is for Type 1 diabetics - do read it and maybe get an idea of how we live our lives now. Yes, it's complex but so is using an iPhone or playing a PS3 game if you've never done it before. Since diagnosis seven months ago, R's mental arithmetic abilities have gone from good to excellent. Just because something is complex it doesn't mean you shouldn't do it.
The third reason for not wanting to use insulin mixes is because we believe that for R's continued and future good health the best way forward is to keep up with new treatments, new technology and what the very best Diabetologists and Endocrinologists are suggesting. So what is it?

Insulin Pump Therapy
So that's another reason for going to UCLH - they're the best, nearest and they're the centre for pumps in the South East.

This morning R was finally discharged from our local hospital, he's home and is now catching up on lost hours of playing Call of Duty on the PS3. Tomorrow we're all off to London - he's being admitted to UCLH for the rest of the week at least and hopefully they can help us to manage diabetes more effectively.
I have mixed feelings about all of this - on the one hand I'm so pleased that finally we'll be seeing doctors who really understand this horrible condition and on the other hand I'm exhausted with fighting both diabetes and ignorance.

Here we are again...

I thought we had passed a turning point today - R's blood levels have been really high for most of the day - way up in the 20s. Normal blood glucose levels are between 4-6mmols, so a reading above 10 isn't good and over 20 often makes people feel very ill. R felt fine all day. As soon as the sun went down so did his blood. So, here we are again feeding lows with small cans of full sugar coke, dextrose tablets, glucotabs or lucozade. The upturn will come between 3.00am and 4.00am and then he'll continue to rise again until it gets dark tomorrow.

All of this without any insulin being injected. Clearly his pancreas is doing something odd because it's not working in the same way that non-diabetic's would.

You know the worst thing about this chronic condition?
How it fills up our lives so we don't talk or think about anything else.
How every time someone asks about how R is I turn into the biggest bore in the world with details about the differences between Type 1 and Type 2, the importance of regular blood tests, the need for an insulin pump, the fears every parent has about overnight hypos, the dangers of extended high blood levels and on and on and on.
It's like when you become a new parent - all you want to talk about is your beautiful baby and unfortunately some parents become baby bores. Let's face it, most babies look like Winston Churchill and while they're cute, they're not the best conversationalists. As they get older most parents remember other things in life but some continue to live through their children. Diabetes turns us parents into diabetes bores because it consumes our whole lives.
I really don't want to talk about this horrible condition all the time. I don't want to write about it either. I'm tired of living with it and I'm not the one who has it.

My apologies to those of you who have read this - if you're a fellow D parent you'll know only too well how consuming it is and if you're an interested 'civilian' I'm sorry I've bored you.

Now it's time to do another blood test and hope he's risen above 5.0mmols. Why? Because his pancreas doesn't know to stop pumping out its own insulin right now so he needs to have a high blood glucose level to go to sleep on - that way he won't drop so low during what's left of the night and he'll wake up in the morning. Did I not mention that? Too much insulin kills.

The Joys of Diabetes

Has it really been three months since I updated this blog?!
Well I've been really busy with my son R who was diagnosed with Type 1 Diabetes in March this year. In September around the time I posted last he began to have a run of really high blood sugar levels. When I say, 'A run' I don't mean he had some high figures for a few hours or a day or two, no. He was dangerously high for about five weeks. At one point he was injecting twice the amount of insulin over twenty-four hours that you would expect for someone his size. What were the doctors and nurses saying? Not much. In fact so much of not much that we changed our GP surgery and got a referral to another hospital. Unfortunately because the other hospital is so good there is a waiting list just to be seen. We've just got a date - it's in December.

Meanwhile since September we've been managing R's care almost entirely alone. Fortunately we've got an incredibly supportive family and some amazing friends. We wouldn't have survived without the Children With Diabetes web site and email list.

Anyway, why am I posting this at 2.45am? Well, for the last three days R has been having less and less insulin but lots of hypos overnight. The last time he even had any insulin was Tuesday at noon and it's now the early hours of Thursday and we've just treated a hypo. We think maybe his pancreas has decided to start up its own insulin production again but it's going a little haywire and overdoing it during the night. We won't know for sure that this is the reason for the extended hypos until we see a consultant so I could be here each night from now until December, rather like some twisted advent calendar.

Hard Work

I try to go the gym fairly regularly – some weeks I’ll manage twice or even three times, other weeks I’m too busy. I used to rock climb a lot and I miss that – going to the gym is my attempt to keep myself ready for the return to climbing which I hope will happen in September when I’ll be working near the local climbing wall on a Tuesday afternoon. It’s hard work keeping any physical shape apart from round. I accept that.

I read a lot of books – some weeks I’ll manage two or even three, other weeks I’ll still be ploughing through the same thing I’ve been reading for days. I’ve always read a lot and some days there just aren’t enough hours of peace to read as much as I’d like. I read for work too – I’m extremely lucky that I can pursue a career that involves me doing something I love. It may not pay much and that pay may not be regular or even guaranteed, but I’m lucky (or daft) enough to be able to get by, somehow.

I work hard at planning and structuring my teaching plans. This September I’ll be teaching a minimum of six courses – four will be very similar but I’ll still need to organise things along the way in order to meet the needs of my students. I enjoy my job, I enjoy teaching and I hope I do a good job. The planning and the delivery, while demanding, time-consuming and sometimes tricky, is never hugely difficult. The reason it is no longer difficult is because I’ve been teaching for nearly twenty years now – boy, does that make me feel old! I love those daily demands that teaching make – the need to think on one’s feet, the ability to quickly adapt material to your audience – it is like performing and sometimes your audience just doesn’t get it. Sometimes you misjudge your audience. It all keeps it fresh, interesting and fun; that’s why I keep doing it.

I know that things worth doing take time and effort. Nothing worth doing is easy. I don’t even like doing things that I find too easy – I’m suspicious of ease. Blame that on the Catholic upbringing.

So now I’ve explained to myself why I need to keep plugging away at writing short stories. The plots will develop, the ‘spark’ will appear and I will get excited about a story I can’t put down. Some of that rubbish I’ve written recently will eventually join the other stories that I’m proud of – even if I haven’t sent them out yet. And yes, the three novels I’ve half-written will be finished. The fourth one that is still in the planning stages will be written too, someday. Why not make it today?

Writing is a job just like any other one. It’s hard, lonely and sometimes what you write is just plain dull. If you don’t like it then go and teach A levels full time.

Subconscious, take that as a telling off. Now come up with some brilliant stories. Thank you.

Rituals

Today I wrote my Daily Pages in my writing shed – I’ve not been able to use if for months partly because of the weather but mainly because one of the windows was smashed. At the weekend P replaced the smashed and hazy plastic pane with a piece of beautifully clear glass. Now I can see one of the cooking apple trees and the pink American Pillar climbing rose. It’s all rather overgrown in the garden at the moment – pieces of trellis need replacing, the grass needs cutting, weeds need to be pulled and soon it’ll be time to plant new perennials and to hope that they survive the winter.

All sounds rather like my writing these days – so overgrown with other stuff from life, unfocused and in desperate need of close attention. I’ve made a start on both the garden and the writing though, so it’s not all bad.

I wrote long-hand today for one hour. Most, if not all of it, is jumbled rubbish. No real attempt at a story or any definite ideas. Instead I thought about routines and rituals. Each day when I’m working from home I like to drink coffee at about 10am. I have a definite ritual for this – I won’t drink coffee with breakfast, that has to be orange juice and fruit tea (cranberry and raspberry). The ritual involves certain mugs, particular teaspoons and ideally a giant double chocolate cookie. Once I’ve had all of that I can start work. On really good days I’ll already have done an hour’s work and the coffee and cookie are the bribe to myself to finish the stuff I don’t want to do. Afterwards I can reward myself again by doing what I really want to be doing – writing.

Even when it is hard – which is all the time – I still have a passion for writing. Writing is probably the most difficult relationship I have in my life – I never have enough time for it, I never allow it to truly flourish and have independence. It’s my ugly changeling baby that I want to keep hidden yet desperately want everyone to see.

And interestingly writing this blog entry has been incredibly easy compared to the slog of the handwritten hour of Daily Pages. I suspect the Daily Pages make this easier – an intellectual laxative.  

Daily Pages

For the last four months (at least) I’ve written precious little – life has sort of taken precedence and somehow my creative life has been swept away. In an effort to bring that back and to create some discipline in my writing habit I’ve begun again to do Daily Pages. Many writers swear by this method – each and every day you sit down and simply write. Yes, I realise there is no ‘simply’ about the whole process of writing, but you can either sit for an hour without doing anything else (no temptations of the internet, telephones or televisions) or you can write one or two thousand words. Stephen King does this every day (if his book, ‘On Writing’ is to be believed) and we all know how prolific he is….Other writers use their daily pages as a journal or diary type exercise in which they simply write down how they’re feeling and what they’re thinking about. I’m not sure how I’m going to use my time right now, I suspect I’ll begin simply writing a journal and then wait to see if stories begin to populate the page.

So, I began yesterday…and here’s the result – remember this is just as I typed it, no editing, no censoring and therefore no good as a proper piece of writing but rather like training or playing scales – it’s all part of the writing process.

Second attempt at daily pages. I know i should be doing this long hand just to get used to the feel of the paper and pen, but here I am tapping away and to be honest i do find it quick and easy to just type. Probably not the best thing for writing because it goes almost as fast as I think...but maybe that’s a good thing.

If I handwrite all of this I’d be considering, probably, each and every word I put down – thinking about sentence construction and grammar and how it would work. it would be a very conscious and possibly self-conscious act.

Quite possibly a very good thing as a run up to getting back onto the horse back of fiction – dear god what an appalling metaphor!

Anyway, typing sort of by-passes that internal critic and just allows me to write as it crosses my mind. i’d love to think that Virigina Woolf did it this way – just allowed her mind to go with the whole stream of consciousness thing, but having read ‘To the Lighthouse’ and seen how closely her writing in stream of consciousness resembles poetic prose like that of Marlene Dumas – no, no, no. Dumas is a painter. I’m actually thinking about Marguerite Duras! Who wrote ‘Hiroshima Mon Amour’ and the beautiful ‘Moderato Cantabile’ which I was introduced to when I did my masters.

Anyway, that’s all notes to remind me of stuff, but doesn’t get away from the fact that when I write a stream of consciousness or even a bit of poetic prose, I just let myself ramble on. Well, I do at least for the first draft. When I go back to it then I begin (I hope) to actually craft it and shape it.

and I’m writing that and my prissy conscience is being very snippy here and saying, ‘Hmmm, and when was the last time you wrote or redrafted something then?’ True. This makes me feel like an alcoholic or a drug addict who has lapsed and is hiding something, lying to myself.

First drafts are just jumble sales of words, aren’t they?

Oooh! I’ve just had a message pop up to tell me I’ve received an email from P. And i need a pee...coincidence? Or am I just finding it really hard to pin myself down to the page these days?

And the funny thing is that I adore writing – I adore creating stories about people who populate my head, different versions of me who can do things I can’t. Different versions of me who can be angry about that lost gym kit which wasn’t lost at all, if only you’d bothered to look! Versions of me who can tell people to stick it. Versions of me who can say, Yeah, thanks for being a five minute friend, really appreciate it, now f**k off.

All versions of me who don’t bother to think about consequences, other people’s feelings, other people’s circumstances and how life affects us all differently. A wild and free version of me – impulsive and probably rather unpleasant. Not at all like the lovely, cheerful, generous, and quietly seething real version.

Still need that pee.

Still haven’t decided if hand written or typed is the way to go. At the moment the typed is wining over just because it’s quick and easy. Surely that ‘s the best way to decide? Whatever is quick and easy and suits you?

There is no right answer.

Writing long hand is just so labourious. But also that’s what can potentially make it really good – fiction I’m talking about here. And even poetry – it works better somehow if it’s written down first. I can’t write poetry on a screen, but fiction just seems to pour out maybe because for me it’s more direct. Or because it keeps up with the action carrying on in my head. Who knows?

I need to go for a pee now, otherwise I’ll wet myself and my coffee will get cold – it’s been sitting there for the past half hour at least. And I’ve not checked that email either – I’m being very disciplined. I wonder if I’ll be able to keep this up?

I really ought to check out my old diaries from my teens. I’m sure most of it is utter rubbish, but who knows? There may be something worth reading there. And I’m only 260 words from reaching my target of 1,000 words!

I really need to find something to write about rather than these tired ramblings. I can see I’ll get a blog post out of this but no fiction and fiction is what I want to write these days. I love writing stories and I miss it. Maybe that’s what I need to remind myself of – my love of writing stories. I used to make stories up when i was a child, write them down, tell myself new stories, read old stories.

I still read but the writing of stories seems to have waned a little recently . Life does tend to push things into the background sometimes.

I miss stories.

I’ve a few in draft form that probably need rewriting and might be worth submitting to some places...I have mixed feelings about doing that too – what if nowhere will accept them? What if...what if...but if I never send them, I’ll never know. And who really cares?

Never, ever let yourself do things or not do things because you’re worried about what people say. Especially when those people are people you don’t know or maybe even like.

do things because you’ve got nothing to lose. Okay, roll out the clichés now. I’ve got hundreds of them.

Cliches are a writer’s version of the yellow post it note – it’s there screaming at you telling you that you need to change this phrase in the rewrites because it’s hackneyed and bland. This is where you put in your snazzy new version which really says what you need it to say to get across your version of the world.

And I’m over 1,000 words and still need a pee and my coffee is still waiting to be drunk.

The good news is that I don’t think that writing this took me more than about 30 minutes. It may not be good, but it was quick.

Tears

I’ve read a couple of rave reviews for the latest Toy Story film and I’ve now got mixed feelings about seeing it. I didn’t see the first one when it came out, I finally watched it when I’d got children of my own and the second one had just been released.

What’s not to like about Woody and Buzz? A wonderful story about friendship and trust backed up with a strong script and enough in jokes to keep an entire lecture on intertexuality going strong. But Toy Story 3 is by all accounts a real tear-jerker and that puts me off going – not because I don’t like tear-jerkers, on the contrary, I love them but I don’t like to cry in public.

Crying in public, in my family at least, is a sign of weakness. Not that we’d say that because we’re as buttoned up as the local haberdashery. Unfortunately this is all at odds with my natural inclination to sob at every available opportunity. Someone’s dog dies? Someone’s dog rescues them? A child wins a race in the face of adversity? Man lands on the Moon? A town gets flooded? All of them bring on the same effect – I cry. When I was studying fine art I was accused of being over sentimental in my work – no surprise there.

So I try to avoid occasions that will end up with me all puffy faced and snotty – it’s not a good look. Unfortunately that’s almost impossible as I try to deal with my twelve year old son’s recent diagnosis of Type 1 diabetes. I went to see our family GP a couple of weeks ago to ask him to help us with getting my son, R an insulin pump because his life will be more close to normal with one and he’ll have better control over his condition. Our GP was great and hopefully R will be on a pump by the end of the year. The meeting itself was a total car-crash of emotions. I couldn’t even get the first sentence out without becoming blotchy, sweaty and high-pitched. I did a lot of fanning my face – you know, the action you see emotional women do on films when it all becomes too much for them. The fanning is useless – it doesn’t cool you down or stop you from looking like a baby having a temper tantrum but it does give you something to do with your hand while you try to drag back the emotional tarpaulin that’s fallen over the side of stability and into the raging seas of loopy. Blowing out seems to go along with this too – I’ve no idea how it’s supposed to help but I seem to do a lot of it when I’m ‘emotional’ – I would say I picked it up at antenatal classes when I was pregnant but that would be a lie – I’ve got twins and it was decided very early on by my doctor that an elective caesarean was the way to go – no breathing exercises but instead a subscription to ‘Hello’ magazine for when you’re waiting around for the pesky kids to be delivered, washed and sent to your arms.

Maybe all the emotion swayed the GP into getting things moving quickly – anything to have the snotty, damp woman out of his surgery.

 

So you see I can’t go to the local multiplex and watch Toy Story 3 as much as I want to because I will sob. Loudly.

Technorati Tags: Toy Story,Toy Story 3,cinema,tears,crying,type 1 diabetes,children

A weekend of exhaustion and exhilaration

It’s the end of the rugby season and this weekend saw the very first tour for Canterbury U12s. Both my sons play for them so the three of us trekked off with the team to South Wales for a weekend of fun, fear, and fry-ups.

The boys left the club Friday morning in a minibus packed with soon to be sugared up pre-teens armed with mobile ‘phones. It was no wonder then that when I joined them in Wales that evening that the parents were well on their way to polishing off a barrel of Shepherd Neame beer and the boys were apparently having a party in their dorm.

The following morning it transpired that some individuals (I’m leaving out ages and names) managed to get about two hours sleep. This was clearly evident during the morning’s activity of gorge walking as plenty of people slipped and fell in the water with an alarming amount of regularity.

We went gorge walking with Call of the Wild. It was an amazing morning for a number of reasons. Both my sons are used to taking part in outdoor activities and some things that could be called ‘extreme sports’. In the past we’ve done white water rafting in Wyoming, rock climbing in the Rockies, hiking in the canyons in Utah and at home we regularly go mountain biking all over the place and rock climbing continues to be a feature of family days out.

But….all of this was BD – before diabetes. Since son #2’s diagnosis some six weeks ago we’ve managed to go climbing once – to The Reach, and we’ve been out once on our bikes just around the local lanes and bridleways. Both activities have involved us going armed with blood glucose testing kit, sugar tablets and cereal bars. It’s also involved the constant worry that he’ll go too low and pass out or go to high and become aggressive and begin vomiting. But you go anyway because it’s what we do and diabetes isn’t going to stop that.

As gorge walking involves being wet most of the time we couldn’t take the glucose meter – I’ve long suspected that it’s a comfort blanket at times and Saturday morning confirmed it. R needs, of course, to test as often as he feels it necessary and at the moment that’s a lot. I believe that part of the testing is him learning how he feels when he’s low or high and the machine backs up his suspicions. I also believe that he doesn’t trust himself and that little read out reassures him. It’s early days yet and if that’s what he needs to deal with this right now then that’s what he should do.

We took only a packet of lucozade tablets and a couple of cereal bars – he ate the cereal bar just as we were setting off and the tablets went into a dry bag that the instructor had strapped to himself. We were incredibly fortunate to discover that Paul, one of the instructors, knew all about Type 1 diabetes as his wife has had it since the age of 15. He’s also a first aid trainer, calm, confident and kind – just what we needed. At one point I thought R was having a hypo – he’d gone white and seemed a bit disorientated. So I called Paul over, he chatted to R, made him do some finger exercises and assessed him. No hypo – but he was extremely cold - it was freezing in the water and R isn’t very big or have much of a layer of fat on him. Star jumps were prescribed and within a couple of minutes he’d regained the colour in his cheeks and was back to moaning about how cold he was! Fortunately this happened right at the end of the morning and our next stop was watching the rest of the boys and dads jumping five meter drops into the swirling cold water. Then it was back to our bunk house where R checked his blood and discovered he was 4.4 – exactly in range just before a meal.

So diabetes hasn’t stopped him. He can continue to take part in any sports he wants to – we’d been told this but until you do it and prove it to yourself, you can’t believe it. Admittedly he had a couple of hypos within the next 24 hours (one right down to 1.8) but we were expecting that.

Last night when we got back from the weekend tour and this morning as I sort out stuff I’ve found myself increasingly tearful through sheer exhaustion and incredulity. I’m incredulous because I can’t believe that a) we got through the weekend without major event and b) that I even attempted the weekend with both boys on my own at all!

It was stressful and hard. It was hard to watch all of the other boys – R’s brother included and be reminded that he’s lost some of that freedom. It’s not fair that now he has to plan ahead with everything he does so that he eats and rests regularly. It’s not fair that he’s got to try to be sensible so much now. It’s not fair that he carries around fear with him every day.

I hate this disease.

Technorati Tags: diabetes,type 1 diabetes,parent of type 1 child,rugby,Wales,gorge walking,extreme sports,hypoglycaemia

We’re here because of history

Some of you may know that when I was a twenty-one year old undergraduate I had a serious illness which saw me in and out of hospital for about six months. That experience changed my life and has rather like a small stone in a pond continued to send out ripples ever since. At the time – actually even now – it was a horrible, terrible thing to happen, but I’m still here and maybe it made me a better person or maybe I tell myself that to excuse the screw ups that happened as a result, who knows?

Anyway, one thing that happened back then was that I learned how friendships can be forged or broken by illness and experiences. Experiences alter us, sometimes it’s in tiny almost unnoticeable ways and sometimes it’s huge adjustments. Maybe I became more aware of my own mortality or maybe I began to realise what’s really important in life – it’s not your job, your possessions or status, it’s relationships. It’s a cliché but no one lies on their deathbed and says they wish they’d spent more time at work.

So now R’s diagnosis of being a Type 1 Diabetic which is currently incurable and life threatening makes work and money retreat into the background while family takes the fore. At the moment we’re still in the shadow of diagnosis and I certainly want to educate everyone I meet – I want to tell you all how without insulin R will become extremely ill. I want to remind everyone how less than one hundred years ago this was an illness that routinely killed children. Now, thanks to the work of Banting, Best, Collip and MacLeod children and adults with Type 1 diabetes can continue to have normal lives. Yes, they need to inject themselves four or more times a day and  they need to test their blood repeatedly each day, but that’s a small price to pay if we consider the alternative. Today I watched a short film all about how insulin was discovered, used to treat Type 1 diabetes and save countless lives. Thanks to ‘Sofaraway’ on the Diabetes Support Website for that link.

And now reading back this post it seems like I’ve been trying to say two things at once (it’s a regular problem with me!) . I wanted to say something about relationships and how illness and big life changing events often alter us and them. And then I got carried away educating everyone about diabetes – just can’t help myself….

I’ll come back to both topics soon – I guarantee it.

Technorati Tags: diabetes type 1,diagnosis,parent of type 1 child,diabetes support website,education,relationships,life changing

Re-entry

Last week both boys returned to school after the Easter break. For R this was his first day at school since diagnosis of Type 1 Diabetes. I took him in by car, his brother went on ahead (out of choice) on the bus. The school was great – showed me the medical room, explained to both of us what procedures are in place for the two other pupils with Type 1 and generally reassured me that they’d take good care of him while he’s there. I was about to leave when R needed to do a quick blood test as it was about two hours after breakfast. And he had a bad hypo – his blood was 2.3 – so what does that mean?
For non-diabetics our blood sugar levels hover around 5.0. R was sky-high at 30.0 just before he was diagnosed. Now we aim to keep him between 4.0 and 10.0. Anything below 4 is an indication of hypoglycaemia and if you follow that link you’ll see that it explains that having a hypo can simply mean feeling ‘spaced’, lightheaded and odd right through to becoming unconscious, slipping into a coma or ultimately death.
Scary stuff added to the daily life of every Type 1 Diabetic.
Fortunately for R he ate some dextrose tablets and within an hour he was back up at a normal level and he could go into class. So what caused this hypo? He’d eaten a large bowl of porridge only two hours before and it’s a slow release carb – greatly loved by GI dieters – it fills you up and should help to keep your blood glucose levels nice and stable. However, add a growing boy and a large dose of anxiety about returning to school, being the centre of attention and having to deal with injecting and testing – the whole newness of it – and his blood glucose levels hit the floor.
A new note to add to my mental filing cabinet about R and his diabetes – nerves give him hypos.

Technorati Tags: diabetes type 1,parent of type 1 child,hypoglycaemia,returning to school,nerves,blood glucose levels,coping,fear

Growing vegetables in your car and other forms of procrastination

Why is it as soon as I have an approaching deadline I begin to find other pressing tasks to do? These same pressing tasks never get done when I’ve plenty of time and nothing better to do, no instead I wait until the new term is beginning and I have classes which I need to plan and prepare for. In a few short days I will be back at work and teaching an entirely new set of students. I’m looking forward to this because I like my job and often there are some really interesting people taking my classes. You would have thought then that I’d be working hard to come up with some thought provoking, entertaining, enquiring lesson plans and doing lots of background reading to re-familiarise myself with the set texts. And that’s not to mention the marking I need to get done for another group of students.

I found this list I wrote months ago about procrastination because I don’t change. Back in September I wrote:-

Actually I feel like having a little nap right now and so far today I have…

weeded the garden [Don’t know why I bothered, it’s full of weeds again now and we’re in April]

fed the chickens

cleaned up the bird table

baked three angel’s food cakes [they tasted HORRIBLE – don’t bother making them again – and they don’t freeze well]

done three loads of washing [see Weeding]

watched part of a David Bowie interview

browsed through videos on vimeo.com

looked at Facebook

checked my email about ten times

looked at how to grow 100lbs of potatoes in a 4x4ft square – I almost forgot to add the ft to 4x4 – now that would be interesting – how to grow potatoes in a 4x4. Would the 4x4 have to be a static wreck somewhere? Or could you do this will continuing to use the car as your family vehicle? Potatoes probably wouldn’t be the best thing to grow as they need to be cooked once dug up. Tomatoes would be better but they require quite a bit of water and unless you managed to rig up some sort of diversion from the windscreen wiper fluid or the radiator it could be tricky.

See what I mean? That was another five minutes or so just pondering how growing veg in your car would work.

 

And now in April I’m really pondering the car as greenhouse thing. Interesting.

Add an extra ten minutes for looking on Google Images for a Greenhouse car and then another minute or two wondering how long it would take me to draw a cartoon and then upload it to the laptop.

 

You know the best advice for combating procrastination? Do the thing you hate doing first. Get it out of the way. Just do it. Then you can play all you like.

*Blows raspberry at screen*

Good writing is full of surprises

In September I’m going to be teaching a whole raft of different classes for Kent Adult Education and amongst these classes is a one day course on Booker Prize Winners of the last twenty years.  I want to teach this because I think so often we hear all the hype about the book but never get around to reading it. Sometimes we get around to reading the book and no one else has and if you’re anything like me you’ll want to talk about the book. Thank goodness for the internet on that count – at least now I can stop boring family and friends endlessly about books I think are brilliant – now I can bore all of you.

No, that’s not come out right….

Anyway, I took a look at the Booker site and picked out a few of my favourites and added some of those I hadn’t read to my Must Read List. In the last few weeks I’ve worked my way through all of Pat Barker’s wonderful Regeneration Trilogy Which I can’t recommend highly enough – I adored it. The Ghost Road is the final one of the trilogy and mixes fact – WW1, Wilfred Owen and Siegfried Sassoon with fiction – the character of Billy Prior who is an officer alongside Owen. The story was gripping and the prose quite beautiful. The ending was no surprise, inevitable to anyone who knows even the smallest amount about the First World War. I was reminded of the BBC comedy series Blackadder Goes Forth by Richard Curtis and Ben Elton and staring Rowan Atkinson, Hugh Laurie, Tony Robinson, Tim McInnery and Stephen Fry.

Even though this is a comedy it’s widely used now in schools to explain and teach about WW1 and personally I can’t watch it through without feeling tearful at the loss of a generation.

Pat Barker uses black humour throughout her books and the effect is similar to Curtis and Elton’s – one moment you’re laughing and the next in tears. Truly wonderful stuff.

Technorati Tags: booker prize,ww1,blackadder goes forth,ben elton,hugh laurie,stephen fry,tony robinson,tim mcinnery,rowan atkinson,pat barker,regeneration trilogy,the ghost road,bbc,comedy,tragedy

Fabulous shoes, fashion and Brighton

So P and I went off to Brighton on Friday night – all entirely last minute and without a great deal of planning or thought. If we’d thought about it at length we wouldn’t have gone – R is only four weeks from his Type 1 Diabetes diagnosis and we’re all feeling raw. The boys stayed with my parents – my dad is Type 2 (old age onset diabetes) and my mother knows exactly how to deal with the boys. This involves going to the amusement arcades in Margate….

Anyway, we set off alone to Brighton. We managed to get a last minute room at the incredibly funky and fun Snooze in Kemptown. We were in Room 1 which is beautifully seductive with red leather armchairs, velvet curtains and walls covered with old metal advertisement signs. The breakfast room was even funkier – each piece of china reminded us both of our childhood homes. P is a vegetarian so often staying somewhere can be difficult for breakfasts, but not here – great veggie sausages that matched my excellent full English breakfast. Anyway, enough of the B&B review – although the place was great! We went off into the Lanes on Saturday for some light retail therapy and were rewarded by some great independent boutiques. After a couple of hours wandering around in the bright April sunlight (yes, the best weekend of the year so far) we stopped for a coffee at the Komedia bar in Gardner Street. Excellent coffee and even better mini passion fruit cheesecake! We sat and watched the world go by (pavement cafe culture really does work in the UK). It seemed as if everyone walking past had taken a great deal of time and effort dressing that morning – streets like this earn Brighton its name of Nottinghill-on-Sea (or is that Whitstable?).

And then I saw them…..

An impeccably dressed woman wandered out of a boutique – Jell-o -  opposite our table. She wore a pair of slightly oversized jeans (I think they were Levis) turned up a couple of times to show off her ankles and the most beautiful pair of red Mary Jane shoes I have ever seen. The shoes matched her brilliant scarlet lipstick and complemented her stripey matelot with a twist t-shirt. The outfit as a whole was spot on trend but it was the shoes….the shoes just made the outfit.

I had to have them!

We went in and I discovered the shop sold these wonderful shoes – designed by Vivienne Westwood. They had other designs and no prices on them. Always a bad sign – if it has no price it generally means I can’t afford them.

The only ones I could see that were the same design were these gorgeous green glittery ones. Yes, they were expensive (but not three figures!).

And even better yes, P bought them for me – an early birthday present. I even wore them out of the shop.

Technorati Tags: shoes,brighton,vivienne westwood,jell-o,snooze,type 1 diabetes,margate,weekend away,b&b,komedia bar

Dizzy with exhaustion

Spring really has sprung around here – the bees are buzzing, trees and bushes are in bud and today I’ve not worn any socks. Spring is definitely here.
I finally put the review to bed – all done and duly submitted. I’m not sure it’ll go to press simply because the show opened three weeks ago and closes in a few days. I’ve written my review though and it’s one thing ticked off the list.
R’s blood glucose numbers are looking reasonable – not so many highs and only a couple of lows so we’re all feeling more positive about this whole Type 1 Diabetes thing. That is if you can ever feel ‘positive’ about it. How it alters your life is rather scary – he looks and acts just as he did before diagnosis. He’s a fit, healthy boy full of sparkly eyed curiosity and generally up to no good. How can I explain then to family and friends that actually he has a life-long and potentially life-threatening condition? One missed meal could result in a hospital stay. One mixed up soft drink – normal for diet – could result in him being sick, suffering stomach pains and generally feeling low for quite a while. Each thing that passes his lips has to be considered.
And unless a cure is found this will be his life.
All of this kind of puts into perspective all my usual moans and groans about not having enough time or money to do what I want, when I want.
Anyway, enough noodling about in my head. I have a bag to pack – P and I are off to Brighton for the weekend. Both sons are staying with my parents. Mobile ‘phones are all fully charged and the DVDs are all set up for a weekend of Grandparents and Boys fun. (Ha! I bet that won’t be how it feels to my parents by Sunday evening).
I do have mixed feelings about leaving both boys right now but we’ll only be just over an hour’s drive away. The local children’s ward is on speed dial. We can all do this.
We must return to some sort of normality, otherwise I’ll lose the plot entirely.
Onwards and upwards! 
Technorati Tags: spring,type 1 diabetes,review,writing,children,brighton

Migration

Hopefully you've found me. I've left my previous blog - Farmyard Tales because I was having problems logging on and also life has moved on so far from those early days almost four years ago when my life did still involve a great deal of the farm.

Now life is about having different jobs, new responsibilities and new demands and pressures - all of which I'll blog about.

Right now I'm worrying about finishing up a review of an exhibition I visited a couple of weeks ago and it's long past its deadline.

I'm also worrying about whether my son's blood glucose levels are okay.

There's gardening that ought to be done, a new fence to be ordered, a new driveway to be planned, essays to be marked, classes for next term to be planned, courses for next academic year to be mapped out and emails to be replied to.

Yet here I am writing a blog.

My excuse is that I just read this great article called

'Six Tips for Forcing Yourself to Tackle a Dreaded Task'

and this is one of the tips - do something every day instead of a couple of times a week.

I really can't be bothered to go to the gym every day and to be honest the chances are I won't write this every day....but so what.

The weather is lovely, the birds are singing, insects buzzing and the grass is growing. Wonderful Spring weather. I should be outside in this doing that gardening or at the very least taking a walk through the woods. It'll have to wait - now the review is glaring at me.