Big Swifty unlikely to make GB Olympics cycling team in 2012

GB top athlete distracted by real life in 2011

Followers will be disappointed to know I am unlikely to be selected for the GB cycling team at the Olympics, just down the road in six months time. There are several reasons for this, what with me being untalented, unfit, overweight and too old; but my training hasn't kept with the programme. I've been busy with real life; indeed I've been so busy I haven't even Big Swifty blogged for a few months. So here's a summary of 2011, for anyone else who's in danger of Olympic selection, and would like to follow my training programme, thereby getting a ticket to watch the sport from the sofa:

Familiar readers of Big Swifty will know that diabetes dominates our life, as we have a five year old who is a Type 1 diabetic. The disease does not define us, but it has to be our priority, and takes up a large chunk of our time, energy and brain power. Our 2011 began with a trip to Addenbrooke’s Hospital in Cambridge, to make the acquaintance of the new member of our little family: Lucky, the insulin pump.  After some training, we were let loose with the real thing, live and pumping insulin, and within a day our spirits felt lighter. It was Frank that was convinced that he wanted a pump and he has never once wavered from this.  We are very proud of our brave boy, who deals with the constant invasive world of the Type 1 Diabetic with a huge amount of grace and courage.

Homeschooling continues well for us and we are looking forward to more fun times ahead.  Our style of homeschooling comes under the “unschooling” umbrella, which means we follow Frank’s interests and thus the world is our classroom!  We can find ourselves drawing dinosaurs and reading about them one day, and then rowing on the river pretending to be Ratty and Mole from “The Wind in the Willows” the next.  We meet up regularly with other homeschooling families and have been enjoying a variety of activities this year, at people’s homes, in village halls, museums, forest schools, and at Colchester’s magnificent new gallery “Firstsite”. Next year will see more crafting, science, dinosaurs, Lego, art and music, plus anything else that takes our fancy.

Travel this year for Big Swifty included a very damp and windy time in NW Scotland solo poetry tour/ cycle camping, and a week in Denmark with Tom.  As a family we spent a fairly disastrous, wet and windy few days in the Cotswolds (with Families with Diabetes), followed later in the spring by a cold, wet and windy week on our own, camping in Devon, which at least ended well as we managed to catch some relatives on the way home.   We fully banished the damp cold ghosts of the far west in September, with a fantastic trip to the east, to the warm and sunny Netherlands. We stayed with friends in the historic town of Alkmaar, and shared a fabulous central apartment above a toy shop and children’s bookshop, next to a Flemish chip shop, and just round the corner from a chocolate cafe!

Big Swifty's been working for Colchester Travel Plan Club, with enough subscriptions coming in, and funding awards won, to keep the show on the road. And the spoken-word stand-up “Fred Slattern, Colchester’s Slum Poet”, has gone well with a wide range of gigs, including one in the Scottish highlands, where Fred claims that “I’m a legend in Gairloch”.

Our voluntary work continues with leading a local support group for parents of children with Type 1 Diabetes “Colchester Circle-D”.   We now have about 60 members, including adults with Type 1 in the group as well. A highlight was our appearance in the Colchester Carnival, where about 10,000 people saw our message. Our fundraising for JDRF, through Planet Frank , has gone well. We were also played a small part in Walk Colchester’s “Jane’s Walk” festival, appearing at some events at Colchester Slack Space arts venue, taking part in Colchester Street Festival (where Fred read a mercifully short poem to the Mayor), and in the Kidstival at Colchester Free Festival.

So, between all this lovely fun, education, caring, work and homemaking, and the number of hours there are in a year, there has been little training for the Olympics. I've cycled only 1400 miles this year, 1300 of them into a headwind and uphill, I believe.

And next year?  We have plans for the house and garden to help us be more self-sufficient; we made a good start this autumn, with a chainsaw, new shed and wood burning stove. All limbs still present, but eyebrows burnt off. And now we're thinking about what else we'll do next year, as I haven't had the call from the Olympics selectors. Whatever we do, and wherever we go, we try to enjoy the ride.

at Facebook      “andrew stanley budd”     “fred slattern”   "colchester circle d”

Today, we lied to our five-year old

Today, we lied to our five-year old boy. He said to Julie "can I die from being diabetes?", and she said "no".

We love his incessant questions, as he tries to figure out the world around him; and we always try to give him straightforward truthful answers. So why did we lie to him?

Frankly, Frank has enough on his plate, dealing with the disease, receiving dozens of pin pricks every day in our pursuit of blood samples for testing. Having new plumbing every two or three days, to link his insulin pump to the fat in his buttocks. Hearing endless discussion every day about his meter numbers, and what we do next in our attempt to keep his blood sugars close to the normal range. Listening to us going on about carb contents of his next meal, and having it all again as we decide how much to take off for the bits he hasn't eaten. Pulling him up, and holding him still, to try to assess how he's feeling, and allowing us to pump insulin into his body.

He needs to grow, and to sleep, like any other kid. He doesn't need to lay awake at night, worrying about how good is the quality of his care, and wondering if it may all be in vain. He should be able to enjoy the sleep of the innocent; tired from the day's physical activities.

Concern about his sudden or long-term death shouldn't be necessary for a little kid, that's the parents' job. A job we'd rather not have, but that's what we've been dealt. Our task isn't just his physical health, we need to consider his mental development too, and we try hard to get the psychology right. (But of course we sometimes slip up....) So we focus on the great life we have together, and try to be matter of fact about the many episodes in the day that are dictated by diabetes management.

So, yes, we're happy to be liars on top of carers, if it shelters young Frank from the harsh realities of his condition. And when he's older we'll review our stance on the "will I die of diabetes?" question.

PS: WE ARE very grateful for the opportunity we have to look after him, and for the medical care that's available. Best wishes to anyone who is dealing with a chronic condition - we know quite a few of our followers are, and not just diabetics.

Bike Racing Part 2 - some new heroes, Phil Southerland and Tony Cervati

For information about my fabulous career as a racing cyclist, see my previous blog. As an update, I had walked away from the sport, feigning no interest, but still keeping an eye on what's happening. And slowly, the riders that were doping were getting caught, and in the case of one of my favourites, Bjarne Riis, (Tour de France "TdF" winner in 1996) he decided to confess his many years of EPO use. So when the likes of Lance Armstrong give us the "most tested athletes in history and never failed a test " spiel, forgive me when I cough.

And along came our then two-years old son's diagnosis of Type 1 Diabetes, and our personal introduction to the world of shooting up with hormones just to keep him alive, the cyclists disgusted me even more with their doping choices. On the other hand, our handiness with the needles gave me an insight into how humans can quickly get used to abhorrent practices with a bit of practice.

Yet, despite it all, I still loved the traditions of the TdF, the supreme efforts and achievements of the riders, the beauty of the scenery and of the peloton. And even if they were doping, they were still incredibly fit strong people, wrestling with machines that don't ride themselves round the two thousand mile course, climbing over many thousands of feet in the Alps and Pyrenees.

Some of the bike riders have now broken the omerta (an agreement not to talk about drug taking), and the authorities seem more keen to act, and the sport is pulling me back. The TdF starts tomorrow, and I'm keener than I have been for many years.

Plus there are some very positive forces out there, and I'm going to mention just two. First up, Phil Southerland, the leader of the "Type 1" cycle racing team, who have steadily risen up the pro rankings, with some splendid results in the wake of Phil's leadership. The team are not all T1D, but they wave the flag for the condition, and show that it is possible to exert yourself to the extreme as a pro bike rider, and succesfully manage T1D, at the same time.

And there's Tony Cervati, from http://www.type1rider.org/, who had the ambitious plan of the extreme Tour Divide ride, riding for himself as a T1D, and all the diabetes community. Unfortunately he met a bear on the road fairly early in his mammoth ride, shot into a ravine, got flushed downstream by icy water, dragged himself out, hitched a lift, and got taken to the hospital.

Guys like these, and the clean riders speaking out in the peloton, have given me back my love of the sport. And no, despite their inspirational stories, you won't catch me back in my lycra gear, it's a wonderful material, but it can only stretch so far.......

Bike Racing Part 1 - the palmares of an also-ran, who fell out of love with the sport

Bike racing and I go back many years. As a 16 yr old schoolboy in the very early 70's I remember the excitement of visiting the Skol 6 Day indoor track racing at Wembley. The thrills and spills on the steeply banked boards. Blood, sweat and gears.

It wasn't until I reached my mid thirties that I thought about myself taking part in bike racing. I had always enjoyed bike rides, indeed one day when I was about 20 I cycled to my nan's house, from Colchester to Grayshott, over 100 miles. Approaching 40 I was aware that my fitness was poor, so I dusted-down and oiled-up my fabulous old lightweight racing bike, and put some miles in, and then some more miles, and then a bit more on top of that . Steadily I improved my fitness and lost weight. Compared with most people I met on the road I was fast and furious, so I paired up with my friend Paul Mason for chain-gang rides under the banner "Racing Team Last". I decided to join the local bike racing club Colchester Rovers to see how quick I had become.

First lesson from competitive sport. Not very fast at all. But I persevered, and eventually became barely adequate. Although I wasn't going to climb high in the club rankings, my efforts were recognised and I won an award for "most trying cyclist", which I think was a compliment. I became very fit, felt full of vitality, and developed a resting pulse in the low thirties. If I had gone to the Doctor with that, I would have been pronounced dead.

As a spectator I followed the sport, mainly at local and sometimes at national and international events. I didn't get much opportunity to travel at the time, but remember a trip where I cycled in the Alps, uphill for 13 consecutive miles, and I felt good as I crested the top. Coming down was good too, as dusk fell, and I got warmth from an old newspaper that I stuffed up my jumper, just like the pros!

I became obsessed with the Tour de France, overlooking the doping aspect of the sport as I swallowed the propaganda that these were highly tested and honourable athletes. Somewhere along the way I fell out of love with the sport. My private life was going through big changes and I realised I couldn't keep cycling off into the distance. Also, scandals like the Festina affair broke, suggesting that many of my heroes were doping cheats. I became involved with anti-doping organisations and individuals, and pursued some stories about doping as a freelance writer. I did a one-man demonstration against the cheats, when the Tour de France started in London. (pic above) I got some national media coverage, but I don't think the sport was listening to me.

I got to know a lot about the darker side of bicycle racing, and the sport and I went adrift. I despised many aspects of the drug takers, looking at the morals, ethics, and health issues. I felt great sympathy for the riders that were trying to ride clean.  It seemed that no one wanted to face up to the truth - the sport authorities, the riders, the sponsors, the media, and the fans. So I turned my back on the sport, and no one missed me, with my modest plamares of some mediocre time trials and "most trying loser" trophy. 

I was still riding mainly locally, but also for fun Land's End to John o'Groats, and another trip of 500 miles of Scotland coast to coast including the Corrieyairick Pass off road in the Scottish Highlands. Plus I was still using the bicycle for transport, but utility cycling is another story. So that's my glorious cycle sport career, an interest that had faded away ... but the embers never quite went out. For Bike racing Part 2  I'll cover what has changed, why it's back in my life, and some new heroes.

If we're a nation of shopkeepers, how come I've ended up as a pharmacist?

When people chat with me about diabetes, usually those who have about 45 minutes to spare, they are drawn to the blood and gore end of the diabetes management spectrum. My friends, or anyone prepared to listen, are fascinated by the concept that we administer thousands of injections and finger-prick blood tests. But what they don't realise is that the Chief Executive of Frank's Pancreas's job includes a heck of a lot of supplies, logistics and paperwork.

Anyone who has young kids knows that feeling when you set off for a shopping trip fully loaded with nappies, wipes, spare clothes in the event of "accidents", a buggy, rain covers, warmer coats, waterproofs, colouring book and pens, cuddly toy..... rendering one unable to get through shop doors or past displays, let alone buy anything else. And local shops wonder why we might consider shopping on line?

Add diabetes in the mix, and we have snacks, plus spare snacks and emergency supplies of high carb gel. And there's bottles of water to carry as they often have a strong thirst. Plus the blood testing kit, with spare testing strips and spare batteries, and two types of insulin, and the chunky log book, carbs guide pocket book, plus a stash of prickers and needles.

Of course, now Frank's got an insulin pump, this stuff is superfluous, right? No, wrong. We still need all that kit, to test his blood, and the old kit in the event of the new kit failing. So when we leave home, we have a full daypack rucksack for "justin case". And there's Frank above, travelling light with his insulin pump held in a Detroit Tigers pack.

If I sound grumpy, I should make it very clear that we are extremely grateful that Frank has access to all this treatment for his Type 1 Diabetes, although it's all a journey we hadn't planned taking. But if Britain is a nation of shopkeepers, how come I've ended up as a pharmacist? Now I know plenty of nerds to run music shops, games centres and sci-fi emporia, but I always assumed I would run a bookshop or a bakery if becoming a shopkeeper was made compulsory.

So welcome to Big Swifty's Pharmacy. We have prescriptions every couple of months for insulin, blood testing supplies and spare paraphernalia in case we need to revert to multiple daily injections. Then we have pump related supplies which are made in Mexico and China, from a California firm, distributed through Denmark and the Netherlands, but I speak to a man with a southern English accent, based who knows where? They get delivered by TNT, and we have to be in to receive them, or we have to go to Mexico to pick them up?

Add in the time ordering the "expendables" kit, follow up phone calls, picking up the prescription from the surgery, going to the pharmacy, going back 30 minutes later to pick up part of the order, and inevitably going back a couple of days later for another 45 minutes.

The online diabetes community has revealed to me one of the rules of the universe, alongside those of Newton and Einstein. It is this. There has never yet been a single case on planet earth that a diabetes patient has obtained a completely successful supply of essential materials in one smooth process. There is always something wrong, be it an incomplete prescription, insufficient stock at the chemist, or a hundred other potential pitfalls.

Plus there's the regular appointments and check-ups at Colchester Hospital with our fabulous paediatrics team, and the sessions at Addenbrooke's Cambridge with the regional diabetes specialists. Very many thanks to them all.

You can now see that having a condition is a full time job, and that's without the time actually dealing with the lovely little boy! So welcome to the life of a family in the diabetes community. Come and see our shelves stashed with supplies, and our fridge with insulin. And if you fancy a blood test or injection I have the experience to help you out. Form an orderly queue please. Tick this, and sign here, here, and here.

Not very "stormy monday blues"

All is peace at Budd Towers, but we're maybe sitting at the eye of a storm. It has been a Big Month for us all.

Foremost in our minds has been Frank's insulin pump. We have now had two training sessions at Addenbrooke's Hospital at Cambridge. During the first week we all took turns wearing the pump, pumping saline into ourselves, making me even more of a salty old dog. Last week we started pumping insulin into Frank, and it's going well, but we have lots to learn about the kit, and how to use it. The main reason for getting the pump is to help the three of us better manage Frank's blood sugar, thereby (we hope) avoiding complications later in life. From Frank's immediate point of view, he is so happy not to have four injections a day, especially the morning stinger (the slow acting Lantus insulin), although he has more fingerprick blood tests than before, has to wear the pump 24/7 and has to have a "site change" (new plumbing into his body) every three days. Right now we are "tweaking his basals", which means we are trying to establish what are the best background insulin levels to suit his body. We should be testing him every two hours, round the clock, to get more data on how his body is reacting. Hence we feel like a couple of knackered rusty old cars.

And another thing. I've been given a redundancy notice from my employer in respect of my main earner job. The money runs out on 31 March, unless some more comes in before then. At the Colchester2020 Travel Plan Club, we have a couple of bids for external funding, and some unpaid subs from the past, so the job might continue.........

Otherwise it's basking in the sun, sitting on the bench in Castle Park, supping Special Brew, which sounds a good option too. And if it's raining, I can sleep in T-Bone Walker's car.

Despite it all, we are calm. We will get by OK whatever happens. And there's always stuff on the horizon. There haven't been many blogs here recently, as we've been busy fundraising for the JDRF (Juvenile Diabetes Research Fund). There are several new pages on this blog - just click onto the tabs above.

And I'm very excited about my new adventure as a stand-up poet. My Fred Slattern act is hitting the road in May, touring the north-west Scottish Highlands by bicycle, and giving short recitals en route. Regular visitors to Big Swifty will be getting updates over the next few weeks. And join me on Facebook "Andrew Stanley Budd" and "Fred Slattern".

"blues boy budd" sings "stones in my passway" on broom guitar

We're all a bit tired and emotional this week, at the Prettygate delta home of the blues. There's a big task coming up and we're anxious. The Blues Boy Budd is taking his parents to Addenbrookes Hospital, Cambridge, next week, so they can learn how to install, use and maintain an insulin pump, which he will be wearing 24/7 for the forseeable future. It should help us achieve better blood sugar control, and maybe help us avoid the more extreme hypos and hypers that keep us awake at night............

Lots to learn, and new skills needed, but it will be worth it. And it's out of our current comfort zone of four injections a day. Sometimes the task seems so difficult, but we know we can do it. Right now we've got the stomach gripes, with apprehension. Sing up Blues Boy Budd:

"I got stones in my passway 

and my road seem dark as night
I have pains in my hearts
they have taken my appetite"
(Robert Johnson, "Stones in my Passway", recorded in the 1930s.)

Thanks everyone for supporting our planetfrank appeal for 2011, looking for a cure for this shitty disease.

Tenacious D - Diane Ranaghan (and don't mess with the D community)

Tenacious D? No, not the creation of Jack Black, this is a real Tenacious D. I wasn't intending to do "yet another diabetes blog" on my "A Flavour of Budd Living" pages. I've posted a fair few recently, and us Budds have a zillion other interests. But it has been a remarkable few days for the world's Diabetes Community, a species that inhabits a parallel planet to "normal life" where we also live when given the chance.

So who's this Tenacious D, and what's the story? It's Diane Ranaghan, a facebook friend of mine that I've never met on Planet Earth, but feel I know quite well from Planet Diabetes. She has a young boy with Type 1 (aka Juvenile) Diabetes, like us, which means we immediately have an understanding that completely outweighs all our differences, like the fact she is from the USA and is rather keen on footwear.

Anyway, on with the story. A couple of days ago the actress and TV presenter Ricki Lake appeared as a guest on "Good Morning America" on ABC, chatting about various things and said "juvenile diabetes is completely preventable" which is untrue, as it's a disease of the auto-immune system. She was possibly confusing it with (the nine times more common) Type 2 diabetes, which is linked with obesity and lack of exercise. (But it ain't necessarily so, lest anyone is going to jump on the "Type 2 is a self-inflicted disease" bandwagon).

OK, people can make mistakes, and who takes what celebs say seriously anyway? (Er, lots of people actually.) But Lake was promoting her book about health, thereby giving her utterances a certain weight to a less informed public.

The Juvenile Diabetes community were incensed by her view, and swung into action. To her credit, Lake issued an apology on her website and by twitter, but the damage was done, as a mistruth had been spread on prime time TV. And the mistruth is counter to the efforts of the D-community to educate people about our disease, seeking public understanding of the condition, warning others about the symptoms, and seeking funding for better management and A Cure.

Public opinion and sympathy is important in a competing market of shitty diseases clamouring for attention and funding. And the last thing it needs is lots of people being informed that these D-kids will have to lump it, because of their lazy, fat, ignorant parents.

Hundreds of people, mainly D-moms wielding insulin pens in one hand and laptops and phones in the other, bombarded the TV company and Lake's people. They lobbied at all levels, overwhelming customer care teams, complaints inboxes, and chief executives' answer machines. They used their knowledge, their personal stories and their passion, to put up a very persuasive case for the retraction of the comment.

But Lake's apology on its own was not enough. They wanted nothing less than a slot on the same show, spelling out that Lake had got it wrong, and what T1D is all about. And that's what they got. So thank you Ricki Lake, and ABC for listening to public opinion, and responding.

So what about Tenacious D? I have no idea how many people were involved in this campaign on behalf of our kids; it was all well beyond my horizon, at home, looking after our boy. But I do know that, from my vantage point, my friend Diane Ranaghan was in there fighting for us all, showing leadership, and tenacity, spiced up with a large dash of guile. As a result of Diane's and the others' efforts, they have turned round a bad story that damaged our community, into a good story with lots of controversy and publicity for the cause. And ABC have said they will come back for more on this topic. 

I'm proud to be part of the world-wide D-community, and proud to be a small part of Diane's world too.

planetfrank - our JDRF fundraising in 2011

We belong to a super community that we hadn't even considered three years ago. From the time of our Frank's Type 1 Diabetes diagnosis 27 months ago we have met many wonderful people - medical experts, parents, and some actual diabetics! And they have helped us beyond measure. We're now in a position to put something back. First, we set up Colchester Circle D, a support group for parents of children with T1D.

And our latest project is to raise some funds in 2011 for JDRF (Juvenile Diabetes Research Fund), the world's top geezers looking at how to better manage diabetes, and seeking a cure..... But we're not just expecting you to just hand over your money, we want to do something that you will want to buy into. So we are putting together a series of events and initiatives for the year, which we will soon outline.

Meanwhile, we have set up a donations page at www.justgiving.com/planetfrank in readiness of our programme, and lo and behold some have donated already. And you will be pleased to know that I will not be following the fashion of posing for a nude calendar, even for charadee.....

Are his numbers OK?

Our friends and family sometimes ask us "How are Frank's numbers?". I guardedly say "Well they're alright I suppose", and they say "Good, so you're managing it OK", and we move onto some other topic. But what I really want them to know, goes something like this:

Frank's blood sugar numbers are only numbers. They are not good or bad; they are just a guide for what we will do next. There are not necessarily any useful trends, just a stack of fluctuating data. Usually there is no particular discernible reason for the ups and downs, and for the large number of readings outside the preferred zone for blood sugar. The numbers are just what they are, a series of snapshots through the day, and there is no mystery to be solved so we can manage diabetes better. We're doing just about alright, and that's about as good as it gets.

For those of us with a fully working pancreas, our blood sugars should be in the 4 to 7 range, maybe up to 10. Going below 4 is hypoglycaemic, and to be avoided. Going much below 4 is a bigger problem, with potentially serious short and/or long term consequences. Going above 10 is hyperglycaemic, also to be avoided, and with serious consequences for long-term health if maintained too high, and serious immediate consequences if very high. In a typical day Frank will have four or five blood tests, and maybe two will be in the ideal range.

Results out of range seem to come from nowhere, which was frustrating for the first couple of years, but is no longer surprising. We have to work with how things are, rather than how we would have liked them to be. Diabetes doesn't play by the rules; it's so much more subtle than anything that can be expressed as a formula or law. We know what signs to look for, and what to do, if Frank's blood sugar is too high or too low, and needs immediate attention.

We know how to calculate carbohydrate content of food. We know how to calculate the amount on insulin to be injected (it's different ratios for the morning compared with later in the day). We know how much insulin to add/subtract if the "before meal" blood sugar reading is out of the ideal range. We make adjustments to timing, having consideration to the type of foods in combination - how quick release are the (naturally occurring) sugars? Will the fat content slow down the whole process, so will his blood sugar get too low, even after a meal? We know how to apply a fudge factor for the amount of exercise taken over the last few hours, and with an eye to what's happening next on the activity front. We know to accept that growth hormones are randomly kicking in, and that Frank's system will be off kilter due to a cold, or a hundred variations on "whatever". We look at nervousness and excitement, and the weather.

And nobody knows all this better than us, his parents. Nobody can look after him as well as us, and no one amongst our (non-diabetic) family and friends has the slightest understanding of the knowledge and skills to manage a Type 1 diabetic, even if they've visited many times or even lived with us. There is no substitute for 24/7 immersion in the topic, and we've had that for over two years now.

So, when I say "it's OK", what I would really like you to know is:

• Type 1 diabetes is an autoimmune disease. IT WASN'T CAUSED BY EATING TOO MUCH SUGAR; indeed Frank was a model of healthy eating before he became diabetic. There is no cure. Frank won't grow out of it.
• There is no "GOOD" (type 2?) or "BAD" (type 1?) kind of diabetes. Some Type 2 diabetics are insulin dependent, some can manage it with better diet and exercise.
• Type 1 diabetes is not a disease where you take your medicine and forget about it. We have to think about diabetes all the time. Yes. ALL THE TIME. We are always thinking about his activity, and what his current blood sugar level is, or what he's eating, or what he's going to eat, or wondering if he's rising or falling (slipping into a coma if too high or too low), or what's going to happen next.
• Diabetes is unpredictable and always changing. Calculating insulin doses is a complicated judgement - and it's NEVER a+b=c. EDUCATED GUESSES are Frank's lifeblood, it's not about number crunching, and scoring "good" numbers.
• Diabetes is deadly NOW. Not in 50 years. Not if we don't take care of him. No matter what we do or how hard we try. If we call our local hospital or have a night in the ward, it does not mean that Frank's diabetes is "bad". Calling experts for help is a normal part of life for us. The more we learn from the diabetes community, the more capable we are to make changes on our own.
• With diabetes, there are no small illnesses. Diabetes makes a simple cold anything but simple. The vague rules we follow go OUT OF THE WINDOW, and we're in the realms of guess work, barely above the level of hocus pocus. Which we've become quite good at, out of necessity.
• We have "BLUE LIGHT" priority at the local hospital, so we can go there any time day or night and get a bed straight in the children's ward. It's good that we don't have to go through the Accident and Emergency bit, queueing up with people who have cut off their own arms with chainsaws, or drinkers who have had the pavement leap up at them. It's bad that we need the blue light system in the first place, but very many thanks anyway to the DGH.
• Wearing an insulin pump does not mean that you're cured, or that life is easy. Frank hopes to get one in 2011. The pump site where a tube goes into the body, is inserted with a needle every 2 or 3 days. We will continue with the many-times-daily finger-prick blood-tests, indeed they will probably be MORE frequent than now.
• We are up EVERY night, routinely checking him over, sometimes changing the bed linen three or more times. That's the way it is, and it is not going to change anytime soon.
• EVERYTHING affects blood sugar - exercise, illness, excitement, nerves, the weather, growth hormones, Colchester United's results...
• Frank CAN eat ANYTHING he wants. However, we'd all be better off with a healthy eating regime. Sugar-free is not always better, if it has disgusting artificial sweeteners. Frank has no need of special food products for diabetics.
• He MUST have his blood test BEFORE eating. Not after a few bites. Not later. BEFORE. So that's why we sometimes appear as Mr and Mrs Nasty before mealtime. At its best it's all an inexact science, and we cannot allow further inaccuracies into our data.
• We go to the hospital every 3 months for a checkup. We know how to handle our child's day-to-day diabetes management better than any nurse or doctor - not that we don't need their expert specialist help and advice. We know his body and disease, and that that being a substitute for a healthy pancreas is pretty much impossible.
• We don't want your pity. We don't want you to feel sorry for us, or for Frank. We enjoy a good, nay fantastic, life. But we want you to FEEL for us... and then take that empathy and put it into action to help us find a CURE (and there's another post coming up on this in a few days).
• People who don't care to learn about diabetes because they tell us it's "no big deal" make us so angry that steam comes out of our ears. On the plus side, this disease has made me less bothered by people who whinge about the slightest inconvenience; they keep their distance from a bristling D-dad.
• It costs a LOT of money, for hormones, supplies, and hospital appointments. Hurrah for the NHS as an institution. And hurrah for the wonderful people at our corner of the NHS, at Colchester and Addenbrookes.
• We can never leave home without our supplies - it's life and death. Nothing is as easy as before... SPONTANEITY of actions and eating IS IN THE PAST. When we leave the house we are fully loaded, with Frank's medical supplies and spares, plus his snacks, and juice, plus lots of water as he has a huge thirst. Plus emergency supplies in case of transport breakdown or unplanned delays; what would be inconvenient for you would be a big deal for us, unless we had planned ahead. When we go away, we check out where the local hospitals are, and the route from where we are staying. Save your money by coming shopping with us, we're fully loaded before we start!
• When we come to you for a meal, we will have an emergency meal for Frank in our bag which we will crack open at his meal time, if you are not serving up. Experience has shown we cannot depend on YOU to provide what you say you will, at the time you say you will. Diabetes stalks us 24/7/365 and doesn't wait around benignly. It has no holidays or rest. NOTHING.
• Diabetes changes EVERYTHING, you can't - for a minute - let your guard down or get "lax" in your care or attention to detail. We do need to know if you have given him some food when we weren't looking. Just because it came from the health food shop, and has "natural sugars", a sesame brittle is still very high carbs, which may be better avoided, or at least allowed for, insulin wise.
• We are TIRED, and we often look like hell, can't think straight, sport dark circles under our eyes, don't hear what you're saying... because we live in a parallel world where diabetes hijacks our brains from time to time... and our energy.
• If I seem extra VAGUE at work, sometimes my mind's elsewhere. My main job is looking after Frank. My main part-time paid job is a couple of days a week, but I have to work at home some evenings to make up the lost time when I can't focus at my paid job.
• We are very FORTUNATE indeed that the two of us have the capacity to devote our efforts to our son. However, we have no family or friends support - no one outside the D-community has stepped up to learn about T1D, or how to test and inject, or learn how to manage it. WE CANNOT LEAVE FRANK WITH ANYONE FOR AN HOUR.
• My wife and I rarely have time together... alone. Date nights are non-existent as we have to be back for the 10pm blood test. So, while I will be genuinely happy for you that you get to go away for your anniversary, or that you got to go out together for dinner and the theatre - I'll also be very jealous! (The play was rubbish anyway.)
• I really REALLY REALLY like to answer your questions, as it shows you're taking an interest.... BUT I really don't want to hear about your 93 year-old Great Aunt Mabel who lost lost both of her legs and went blind, especially you telling the story in front of our Frank.
• I do NOT want to hear about a cinnamon enema, a bed of nails with a kryptonite pressure prong onto the pancreas, or some amazonian tree moss that you think is going to cure him. I really don't want to hear you suggest that we just stop giving Frank carbs and everything will be alright. If it was that simple do you really think I wouldn't know?
• No, I'm really not glad Frank "got it so young" and that "he'll never remember life before". No, that's sad. And his exposure to a health threatening condition is longer than those diagnosed later.
• Do you need an ANIMAL put down? Our medical supplies are all around our home - in the fridge, in his green bag kit, in the van, juices stashed in convenient places, sharps bins, spare supplies, boxes of kit, paperwork for his treatment, all to help us have a normal life while living with Frank's Type 1 diabetes. We have enough insulin to knock out a small herd of horses.
• It is incredibly painful to hold your child down to give him shots or blood tests. This should always be done with the agreement of the child, and it can take a stressful hour on some occasions.
• We've already cried enough tears to fill an ocean, it does get better with time, it will always hurt, and we are always UP FOR THE FIGHT for our child and his health.
• We will never let diabetes stop him or hold him back. Dealing with diabetes makes you stronger. Our boy is so brave, even when we feel weak.

While I long for you to "get it" and to understand this crazy life we live.... I also hope that you are ALWAYS an outsider and that you NEVER experience this first hand.

Thanks to Hallie at http://www.theprincessandthepump.com/ for inspiring us to tell our day-to-day story.

A year in eleven (shortish) paragraphs

That's us. Christmas 2009 in Brittany, just the three of us. And here's our contribution to the wretched world of the round-robin annual newsletter; yes it's the Prettygate Postings for Christmas 2010. Read and cringe. (Why is it a round-robin? It's insulting to Robins.)

"We’re just back from our summer holiday – a few days in Birmingham at the end of November. We never were the “sun and sand” types, so it was perfect. We travelled by bargain-ticket train, and hired an apartment in central Birmingham’s Chinatown. A highlight of the trip was the Frankfurt Christmas market in Birmingham (yes, really!) which set us in the mood for Christmas at home this year. Frank’s best bit was catching the tram to Wolverhampton, the little wanderer.

We apologise for spoiling your 2010 by not producing a Prettygate Postings for Christmas 2009, but we were not in Prettygate last Christmas. We decamped from Colchester to Brittany for a long December break, getting back in the last week of December. We stayed near Quimper, and enjoyed a quiet holiday, away from the over-the-top commercialisation of Christmas in the UK. Bah, humbug.

2010 has been a bit of a stay-at-home year, as we had neglected the house a bit from 2008, when we first had to concentrate our efforts on doing our best to manage Frank’s diabetes. The house now has nearly all the windows replaced, and we have extended the patio and roofed it with a sun-shaded pergola - imagine a cross between Tuscany and Accrington. And the garden has been cleared in readiness of our moves towards hard-core radical homemaking and backyard homesteading – insert your own “The Good Life” joke here. We had a bumper crop from our one vine vineyard with about ninety bunches of grapes, and the best ever quince yield, and collection of wild apples.

Frank’s learning is going well, with his natural inquisitiveness. We had been looking at the possibility of home schooling, even before Frank’s diabetes diagnosis, and he would have started at the local school in January 2011 if we had chosen that route. We decided on balance to go for home schooling, so we can enjoy that together, and also better manage his diabetes. Frank’s circumstances are very much out of the ordinary, and a young child with diabetes is in a vulnerable position at school. If he went to school he would have a lower level of skilled observation and care for his condition, and we would still need to be on standby, and have the task of visiting him at school at lunchtime to test and inject.

Besides, our Big Swifty homeschool is a great option. We belong to national and local networks, and there are lots of activities out there. For those that are interested, we are following Un-Schooling principles, as set out by John Holt. Our education projects are sometimes mentioned in our blogs.

Much of our capacity is taken up with our family life, with Frank needing a lot of care 24/7, but it is very rewarding to be making a good job of it. For those that don’t know, there are only guidelines on how to manage diabetes; even with good management and control there is a large random element there to trip you up. We are both involved in all the work, and it makes it much better for us all to have second opinions on the judgements we make, about food and insulin timings and dosages. There is much more about what it really means to manage a child with type 1 diabetes on our blogs, especially at Muffin Moon. Next year we hope Frank gets an insulin pump, which he will always wear, and we will plumb into his body every other day – and we will still have to continue with the 4-5 blood tests a day. It should mean less injections and better care, but it ain’t a patch on a healthy pancreas.

Our work is going well, with our main income from Andrew’s work for the Travel Plan Club, linked with Colchester2020, a local organisation that survived the government’s bonfire of the quangos. Other jobs include working for Colchester Borough Council pounding the beat for the Elections Service, and his latest creation, the poetry stand-up “Fred Slattern, Colchester’s Slum Poet”. Jules is full-time mama, wife, homemaker and inspiration. Our voluntary/ self-employed work includes setting up and running a local support group for parents of children with Type 1 Diabetes “Colchester Circle-D”. Jules runs a Knit and Natter group, and has been very busy crafting under her Muffin Moon brand. We did our bit for Colchester Free Festival in September, specifically for the Kidstival and at a Busk Stop. Big Swifty Associates were also involved in walking promotion as part of “Walk Colchester” http://www.colchesterwalktowork.blogspot.com/ took off in 2010/11.

We’ve been to a fair few arts events, but in the evenings it’s always only one of us, as we don’t have a trained babysitter to enable us to go out as a couple - maybe when Frank’s older! On the other hand, we have a lot of daytime together as a family, with visits to local sea and countryside, and maybe the odd café/ fish and chip shop.

Andrew had a few days in Scotland in mid-May, backpacking from Glenelg to Invergarry, with Rod Ross and Alan Hardy. At the end of May we went camping in Yorkshire at the Gaia Tribe http://www.thegaiatribe.co.uk/ which was loads of fun and lovely food, but rather cold and windy for us southern softies. Henley-on-Thames is more our scene; balmy days by the river with Severine. We tried a bit of house sitting at a friend’s house in Norwich, but got rained off during a non-stop raining September. Turnips underwater, in the Norfolk paddy-fields.

We have enjoyed the build-up to this Christmas, after a year away from it all last December. We have had a Martinmas party round our house for the local nightshelter, and next week will be hosting a solstice event for the immediate family. We have Severine and her friend Louise staying with us over Christmas week, so we will have to pretend to be ultra-English. Then we also have the older family visiting for Christmas Day. We are looking forward to a peaceful time, and a quiet night in on New Year’s Eve – our life is exciting and dramatic enough, 365, thank you.

And next year? Frank’s having music lessons, Andrew’s making cheese, and Jules is opening an Etsy shop. With love to all our family and friends for 2011, from Andrew, Jules and Frank.

http://www.muffinmoon.blogspot.com/ http://www.andrewbudd.blogspot.com/ http://www.bigswiftycompany.blogspot.com/
at Facebook “andrew stanley budd” “julie budd” “andrew budd” “fred slattern” “colchester circle d”

A calculated look at "dead in bed syndrome".

Ask the parent of a diabetic child about what is their greatest fear, they may well spout the charmingly named "dead in bed syndrome", which is exactly what it says on the tin. There was a death from this in the USA recently, triggering lots from the D-community to display remembrance candles. Of course, I have the utmost sympathy for the family of this child, but I found some of the D-community's response, (dare I say it?) a little mawkish.

Lots of D-parents, and let's be frank, it's mainly D-moms rather than dads, that blog or use facebook, were describing how they live in fear of DIB syndrome, how they watch their kids overnight, and are unable to sleep themselves. Maybe I'm a (part of the way along the autistic spectrum) cold fish, but I like to play the odds game, when assessing any situation, and determining my reaction on how to handle it. Maybe what I say will give some people some reassurance, others may just consider me analytical and heartless.

Looking at http://www.childrenwithdiabetes.com/ (and taking what they say at face value - maybe a big assumption?) it says that for every 10,000 patient years, between 2 and 6 people die from DIB syndrome. Taking the average figure of 4 deaths, that is of course 4 too many. But it means that one dies for every 2,500 patient years. (That could be expressed as "out of a sample of 2,500 people with diabetes, one of them will die from this syndrome per year".) Very unlikely for any single individual, but nevertheless distinctly possible.

So how does this compare with our risk from lots of other diseases and dangers? In the UK about 2,500 of us a year, get up in the morning, bright eyed and bushy tailed, and don't ever return home, as we get killed in car crashes. What about meningitis? Here today, but maybe gone the day after tomorrow. Heart failure and instant death from undetected problems may be out there stalking us. And there's hundreds of other diseases to fear, where maybe we have a day, a week, a month, or a year to live?

How do any of us (not just D-people) sleep at night knowing our loved ones could be taken from us at any time? The answer of course is that most of us just get on with life, and don't think too much about that aspect. But with chronic conditions like diabetes we are constantly reminded of our mortality by the nature of the condition, and the complex management that it needs.

So let us look at the risk that our beloved will die this evening from DIB syndrome. Starting from that 1 in 2,500 chance of it happening in a year, the odds for tonight are 1 in 912,000. A risk I could do without, but is it one we should habitually lose sleep over? I'm so tired I think I'll sleep tight, even though it's my turn tonight and I'll be up for the nightime duties with our little boy.

I hope Frank's picture above isn't too scary, and that this blog has given at least some of my readers some solace over something we would rather not have to think about. Best wishes to us all. And deepest sympathies to anyone who loses someone tonight.

The Cure is a tempting mistress, but we're not waiting around for you.

When running a marathon, or backpacking, you don't set off with a sprint. You find a pace you can sustain for the length of the event. And when the event lasts sixteen years, a calm steady approach looks best to me. With Frank's diabetes, we're now over two years in, with fourteen to go until it's his responsibility at the age of eighteen. Frank's condition has taught us much about diabetes, and much more about ourselves and our wider community.

Our National Health Service has come up trumps as far as we are concerned, and the Benefits system means that we can tick over without having to sell-up to fund the time we need to put in, to look after Frank especially during his younger years. So thanks to the UK taxpayers for helping us - and I'm one of them too!

So how do we deal with the condition, and how do we feel about a cure? I've covered managing diabetes in other blogs, so I won't go over the old ground of finger prick testing, multiple daily injections, observations every ten minutes during the day, and procedures during the night. We just have to get on with it all, we have no choice.

And "The Cure"? Well we're not holding our breath or counting down the days. Even before we had personal involvement with diabetes, we knew that a cure was many years away, so when we had the diagnosis, this lack of a fix on the horizon didn't come as a surprise to us.

We can't wait for a cure, in two senses. A cure would alter Frank's and our family's life, enabling us to jetison all the mental, physical and emotional effort in managing the disease, and avoiding all the personal discomfort for the boy with the fingertips of steel and the pin-cushion bottom. And we can't wait for a cure, as we've got to live our lives in the here and now; not some fantasy dream life at some unspecified time in the future.

The day-to-day management of Type 1 Diabetes takes all our capacity, and we don't think very much about The Cure. Sure, we support the efforts of the JDRF (Juvenile Diabetes Research Fund, an international organisation), and Diabetes UK who give lots of support. But we can't put our lives on hold until a miracle cure eventually turns up.

Frank's just an ordinary little kid, in almost every way. Apart from the time he's having medical attention, he's just charging about as four-year olds should. The picture shows him zooming off into the distance, on his scooter bike on the Wivenhoe Trail with his cousin.

We have benefited massively from the diabetes community. Thanks to the internet we have access to all the information we could ever want. But, even better, we have made contact with scores of people in similar positions, sharing experiences, looking at how best we can look after ourselves, and live a regular life. We have played our small part by forming Colchester Circle D, to support local families with Type 1 Diabetes.

There are super blogs out there (including "click of the light", "muffin moon", "instructions not included", "shoot up, or put up"), with lots of practical information, emotion and humour. I love these blogs, some written by people who have had diabetes many years. The way they pace their lives, and their approach to "bad days" are an inspiration. (For the information of non diabetics - even the most careful experienced diabetics have bad days - the condition certainly does not obey the rules that we follow when we do our best to manage the beast.) And little is said about a cure. They're all busy just getting on with their lives.

The Cure is a tempting mistress, and some type 1 diabetics are in hot pursuit. They expend lots of their energy pushing for extra funding, and posting on the internet to raise awareness of diabetes. Maybe it's our make-up, but we simply don't have the stomach for such a fight. Our energies are so focussed on getting by, that we simply don't have the capacity to be angry about the condition, or to lobby for its place in the public's and the authorities' perception of the ranking of Type 1 diabetes, compared with dozens of other rubbishy diseases.

It's Diabetes Awareness Month, and this blog is part of my contribution to this. So, if you were expecting me to beg you to donate to JDRF, or to rail on about our terrible lives, I'm sorry to disappoint. Actually, we enjoy a very good life and we're doing our best to get the most out of every day, inspired by our own brave little hero who just lives for the moment. The Cure may be a tempting mistress, but I don't think she's coming our way any time soon. But it would be nice, and hand over your money.....

Pump and circumstance

It's a big week ahead at Big Swifty Towers. Frank's diabetes management is incessant, 24/7 attention, but we're all doing pretty well (and hopefully pride doesn't come before a fall). At his most recent quarterly check-up Frank's HbA1c test gave as good a result as one could possibly expect for a four year old with Type 1 diabetes.

Poor test results with persistent elevations in blood sugar would indicate it's more likely that the person would have increased risk for the long-term vascular complications of diabetes such as coronary disease, heart attack, stroke, heart failure, kidney failure, blindness, erectile dysfunction, neuropathy (loss of sensation, especially in the feet), gangrene, and gastroparesis (slowed emptying of the stomach). On the plus side you get to wear a medic alert bracelet.

At present Frank has about eight pin pricks a day in his fingers, and four insulin injections. This keeps him in good health but does little for the flesh on his fingers and bottom. Some people with diabetes wear "fingertips of steel" T-shirts. If he takes up the guitar he will have ready made callouses on his fretboard fingers.

So what happens next week? We're off to Addenbrookes Hospital at Cambridge to open discussions about the possibility of Frank wearing an insulin pump. This should help us better match his carb intake with his insulin needs, being able to put smaller doses of insulin into his body, as and when required, without the injections.

And, yes, he can eat meals like the one in the picture, which he enjoyed at a cafe in Ipswich when we saw the mammoth. Type1 diabetes is nothing to do with the current obesity epidemic, and he does not have to avoid carbs in his food. Indeed, a mixture of carbs, protein and fats is pretty good, as he avoids the blood-sugar spikes that we would all have if we had high sugar fast release foods. Don't you wish you had a "full English breakfast" diet like Frank's?!?!

And finally, the usual disclaimer, I am not a doctor, and don't take anything I say as proper medical advice. After all, I'm the guy that thought that, if he shared an active lifestyle, and fed his young son a healthy diet of mixed foods, some wholefood and organic, he would avoid getting any of these chronic conditions everyone's getting these days. Pah.

Everybody wants to be happy

"The planet can't afford a growing world economy, and the world economy can't afford a recession, so how should we live?", says me, paraphrasing Professor Jules Pretty of University of Essex, who gave a keynote speech at Colchester2020's Business Breakfast yesterday. He talked about consumerism round the world, comparing Europeans and north Americans, with people from Asia and Africa, and how many more planets we will need if they catch up with our levels of consumption.

So, as I tucked into my plentiful breakfast, he said (me paraphrasing again - his language was a little more learned) that "we seek growth so we can have more stuff, and we want more stuff as we believe it will make us more happy". Many of us in the west aspire to much more (often pointless) stuff, and the consequent happiness it will bring us, but we overlook basic human psychology.

Pretty then decribed a study of two very different groups of people. One group consisted of people who had won a fortune on the lottery, and the second were individuals who had become paraplegic following car accidents. For both groups, at least a year had passed since the traumatic/ecstatic event of their crash/win, and they were asked about their happiness "after" compared with "before".

And both groups reported that they had settled down after the initial change in feelings, and had reverted to how they were before, and were no more or less happy despite the big change in personal circumstances.

So, if you're unhappy, and dream of winning the lottery and subsequent happiness; first you almost certainly ain't going to win, and secondly, if you do win, you ain't gonna be happier. For myself, it has been rather traumatic to have a two-year old become type-1 diabetic, making me angry and ranting, and turning our lives in a different direction, but I can't say I'm any less happy twenty months on from his D-day compared with "before".

(Picture - tightrope walker, Colchester High St, Colchester2020 festival, evening of 25 June 2010)

News just in - Christians save Ys and cure diabetes

"Christians save drowning city from the sea". Read all about it. News just in, that the city of Ys was not drowned after all, despite reports yesterday on Big Swifty. The world's fairest finest city, has not, repeat NOT, drowned by the weight of its sin.

Today I received this CD through the post, telling the Ys story in yet another way. This time it's an opera, composed by Edouard Lalo in 1875. As with many fables, they take on new forms to reflect the tellers' different times, attitudes and ideas.

Right now, there's something that's really annoying some of the Diabetes-community, and that's religious groups trying to persuade people that their serious illnesses and conditions can be cured by their god. Even life threatening diseases can be overcome if you just have enough faith. There are churches out there preaching that you should give up on scientific medicine, and let their Lord take over your casebook. Now, if you're an adult of sound mind, and you want to stop your treatment because you've had enough suffering, or you have adopted a new belief system, I respect your choice. But if you're imposing this on children, or people who are unable to make their own judgement between science and faith treatments, be very careful.

There are individuals in the USA who are now being prosecuted by the state, for neglect of care of their children, after abandoning medical treatment for their children with Type 1 Diabetes, and trusting the Lord to save them. Unfortunately He didn't or couldn't, but He isn't the one in the dock. Of course there are churches out there who can tell tales of diabetes cures, and we're probably talking about people who have had improvements to their type 2 diabetes. To some extent in some cases, an individual may benefit from lifestyle changes. But to proclaim to people with Type 1 (and for many with type 2 Diabetes), "throw away your insulin crutches and walk", it will make them fall over, probably with a very hard crash to the floor, maybe never to get up again.

So the appearance of "The Bible Cure for Diabetes" by Don Colbert has wound up many a person with diabetes. It's widely available at places like Amazon, airport kiosks, and many bookshops in between. I personally have not read this book, and won't be buying a copy, as it would just make me angry, as well as supporting this man's business. Apparently Colbert gives no weight to the fundamental differences between types 1 and 2 diabetes, and offers false hope to those with T1D without giving any evidence of anyone with Type 1 being cured using Colbert's/god's method.

Now I don't necessarily believe everything that the scientific community puts out, and I have some understanding of the limitations of much of their work and the effectiveness of what they can offer. But I wouldn't trade it in for religion. Scientists have been on the case for around a hundred years, and good progress has been made in diabetes management. God has had a few thousand years since the Garden of Eden, and hasn't yet shown any signs of progress with the faith and prayers method. For those with medical conditions out there, that want to "double their chances", maybe try both, if that floats your boat.

And, talking of boats, on http://diabetesaliciousness.blogspot.com/2010/06/there-otta-be-lawthis-made-me-mad-and-i.html Faye has commented with "a story about a guy who's trapped on the roof of his house after a flood. He prays to God to help him out and save him. A neighbor with a boat comes over, but the trapped guy refuses the help, saying that God will save him. The water rises and rises, and a few different people come by with boats to offer their help. Each time, the guy turns them away, saying God will save him.The guy finally ends up drowning, and when he meets God, he asks why he wasn't saved. God replied, "I sent multiple boats, but you refused their help."

• To the religious, thanks for your best wishes and support for people with diabetes, but please don't expect me to choose between a faith-only approach, and our hard-core analytical techie (but very imperfect) method.
• Don Colbert, take your book back to the dark ages where it belongs.
• Glen Hoddle and the like, I don't think our Frank should be punished for sins in an earlier life.
• And if the Christians saved Ys, where is it now?
  

Reports are coming in that the Christian Saint Corentin saved the city in the last act, following Dahut's self-sacrificial drowning. (Or was she pushed by her self-serving father? - See "News of the Underworld" this Sunday.)

Yes, we can renounce our Druidical beliefs, embrace the Christian dogma, and the kind and loving Christian god will save the sinning citizens.

Hellhound on our trail

We've a Hellhound on our trail, and its name is Diabetes. It's a foul nasty beast that gets extra pleasure from popping up and biting at the rare moments when we're daring to relax. Just when we think we are doing well, our very own Cerberus visits from Hades and brings a nasty morsel for us. It jumps into our faces, and bites our arses.

Frank's been diagnosed Type 1 diabetic, for nearly 600 days. It's not just the 1800 finger-prick blood tests, or the 1200 insulin injections since then. (And the sums will be much larger for the next 600 days.)

It's not just the side issues of excessive thirst, and the consequent bedwetting, sometimes needing three sets of a linen per night.

It's not just the health implications of his conditions - will he lose his sight by the time he's 15, will he have kidney damage by the time he's an adult, will his circulation deteriorate so that he becomes gangrenous by the time he's 30, will he suffer the pain of neuropathy, will he have a stroke or heart disease at a young age, will he develop related conditions like coeliac's? And who will look after him if we're not around (yes, we're all getting older..)?

It's really not the diet, coming up with suitable meals for diabetics is no problem for foodies like us. Calculating carbohydrates and insulin doses is a doddle.

What's so difficult is the incessant nature of it all. It's not just an every morning pills cocktail, it's not about remembering to take a set dose before each meal, in the way one would for some diseases. With diabetes, it's about watching all the time, looking for signs. We take into account what has been eaten, how much insulin has been given (and what type - he takes two), how far out of "normal" range he is, and the balance between carbs, protein, fats recently consumed. Then it get spiced up with thinking about exercise he's had in the last few hours, what's happening now, and what's coming up next. Then we can only guess if he's having a growth spurt or fighting a bug he's recently been exposed to. Constant observation, and fine tuning with insulin shots or snacks or pushing him to exercise.

"I gotta keep movin', I've gotta keep movin', blues falling down like hail" And that's our life with Frank, keeping moving, checking him every ten minutes, running through the mental calculations to assess where his blood sugars might be, avoiding the hail that could blast him off balance, into hyper- or hypo-glycaemia, with more damage to the body, and the possibility of coma, brain damage and death. "And the days keeps on worrying me, hellhound on my trail"

Frank's parents are run ragged by it all. But Frank looks well on it all; he appears and behaves like a normal healthy little boy. Knowing we are doing our best with a very imperfect and rickety assessment, is the greatest possible reward. It keeps us going in the face of the Hellhound that will never leave us alone.

("Hellhound on my trail" recorded by Robert Johnson, Dallas, 1937)

Two for one

Thursday April 1st, and the Strada restaurant is almost full. A jolly evening to celebrate my oldest son's birthday. Splendid company, three courses of scrummy food, and a few drinks. As we get ready to leave, embarrassing dad discretely rustles in his bag for his "two for one" voucher, and glancing round, we realise everyone's playing the same game. Tonight's the last night of the current offer. So why bother with all this faffing around on the internet to get the deals, printing out a bit of paper, and having complicated bills? Couldn't we just have cheaper prices?

Whatever, the four of us chatted about what's happening now, and what plans we have. We also reminisced a little about the past, though none of us have reason to dwell there too long; hopefully there's much to look forward too?

And it's a big day for my youngest son too. It's his quarterly check up, to see how we're managing his diabetes. Some of the kit in the hospital is broken, but that's not a problem; we have pencil marks creeping up the kitchen wall to confirm he's growing up. Disappointingly, we can't test his blood for the HBA1C test, which would be an indicator of his overall exposure to the harming effects of hyperglycaemia.

That having been said, we're doing the best we can, striking a fair balance between the invasiveness of more frequent blood testing and injections, and the steady application of his usual three-times a day tests and four insulin shots. Whatever the result would have been, we can't imagine a better regime than what we have, imperfect though any such system is.

Seeing my two lovely boys in one day. I'm proud of them both, and I'm a lucky guy.