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.