Book launch and anniversaries

Yesterday evening we launched 'Slantways' an anthology of prose poetry written by a group of MA students at the University of Kent. Their tutor, Patricia Debney had been teaching them about prose poetry two and a half years ago when her son was diagnosed with Type 1 Diabetes. Patricia took some time off but the MA group carried on writing and then decided to put together a book to raise some money for JDRF - the Juvenile Diabetes Research Foundation. One year ago just as they were beginning to formulate what they'd do and how to go about it, my son was diagnosed with Type 1 Diabetes. Patricia and I already knew each other as I'd graduated from the same MA course some years earlier. She was also the first person I contacted when R was diagnosed because I knew she'd been in the same place eighteen months before when her son was exactly the same age as mine. Within a couple of months I'd also been asked to contribute to the anthology - I'd already had some prose poetry published and it didn't take long for me to sort out some other pieces to add to it.

Finally last night we had the launch at Waterstones in Canterbury. The plan was to read one poem each and we'd go in alphabetical order - making me first up.

So far so good.....

Except that 22nd March 2010, exactly one year before to the day my son received his diagnosis and instead of me going to a reading of Scarlett Thomas's latest book I was in the William Harvey Hospital on the Children's Ward with him. In the past year R has been in hospital three times - the first on diagnosis, then six months ago he was readmitted because his blood glucose levels were so unstable and then he was transferred to UCLH where he remained for another few nights. He has gone from being a normal boy who plays rugby, enjoys meeting his mates, goes mountain biking, rock climbing and swimming to a boy who has only had about two weeks of school attendance since September and whose life has temporarily taken a back seat to this horrible condition. There have been two big positives in the last year - R was given an Insulin Infusion Pump which means that he no longer has to inject at least five times a day and we found a wonderful website and email list called Children With Diabetes and through that we've all met the most amazing families whom we're proud to call friends.

So, back to the book launch....Patricia said a few words to 'open' the reading and launch and then I was up. I'm used to standing in front of some very unfriendly groups - I've taught Ritalin repressed primary school children right up to hung over undergraduates. An audience of supportive poetry lovers should have been a breeze. I'd planned to explain how I'd come to be invited to contribute, how pleased I was to see everyone there and then finally tell them how the poem I was about to read, 'Beachboys' was written all about my twin sons who were both in the audience.

What actually happened was that I walked up to the front, faced the audience of about forty people, said thank you to them for turning up.....and then completely lost my nerve and almost began to cry. I turned not to 'Beachboys' which I knew would now make me blub like a hormonal teen in front of Justin Bieber, but instead I went to 'The Seahorse' and was about to begin to read before someone pointed out that I hadn't said who I was....
I read 'The Seahorse' despite my voice, my hands and my legs shaking. I didn't cry but I did look terrified, I didn't feel terrified, instead I felt very sad.

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.

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.