Friday, 31 December 2010

Reach out - animateddog sings... 4C/P

A wonderful song, reflecting on the past, but facing the future. Perfect for New Year's Eve. Best wishes to all my blogging pals.

Nathaniel sings "reach out, push up, speak clear, bring love".

Put everything else down, crank up the volume, and listen to this three and a half minutes of inspiration. It has been my pleasure to get to know Nathan (from the Dead Rat Orchestra) a little in 2010.

Thursday, 30 December 2010

100th post GIVEAWAY!!!!!!

This is not really my 100th post, it's my 101st! And I join in the international blogging tradition of offering a giveaway in a draw between anyone who comments on this posting. And what's it all about? The picture shows me in my Christmas Apron, made for me by the talented Mrs Muffin Moon. And the apron's not for freemasonry, it's for cooking. Its first works outing was on 27 December when I made 15 jars of cider apple butter, to Hugh Fearnley Whittingstall's recipe from his River Cottage "Preserves" book. I made it from free windfall apples from a secret location, and it has cinnamon and all-spice added to the boiled-up cider, apples and sugar.

And that's the giveaway prize. I will post a jar of it anywhere in the world, probably against all the regulations, but I'll take a chance. And you've got to take a chance if you eat it - however, it has never done me any harm.

I look forward to your comments. Based on this blog's history Alistair will win, but a free offer might bring lots of my silent readers out of the woodwork.........

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 for inspiring us to tell our day-to-day story.

Sunday, 19 December 2010

Captain Beefheart - Flavor Bud Living

"pappy with the khaki sweatband, bowed goat potbellied barnyard that only he noticed, the old fart was smart...the old gold cloth madonna dancing to the fiddle and saw, ...he ran down behind the knoll 'n slipped on his wooden fishhead...." (opening of "old fart at play" from Captain Beefheart's "trout mask replica").

The strapline to the Big Swifty blog is "a flavour of budd living", an ap
propriate pun on Captain Beefheart's composition "flavor bud living", my little joke probably going over the "sam with the showing scalp flat top" heads of most of my readers.

Don Van Vliet (the Captain's "real" name) died yesterday, leaving a legacy of about twenty albums of quirky music and entertaining wordplay, and a stack of paintings for his other career as a painter. It always amused Don that his writings were taken by some as zen wisdom. In my head I can hear Don reciting/singing, and also my pal Rod who could cover it very well. Indeed, Rod read Don's "Orange Claw Hammer" at our wedding reception, in his best Beefheart snarly drawl.

"thirty years away can make a seaman's eyes, uh round house man's eyes, flow out water, salt water" Well over thirty years
of listening pleasure, and our own special celebration seven years ago.

Saturday, 18 December 2010

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” 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 cafĂ©/ 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 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.
at Facebook “andrew stanley budd” “julie budd” “andrew budd” “fred slattern” “colchester circle d”

Thursday, 9 December 2010

To love, and be loved. Difficult enough to be there for many of us. Put Gay and Disabled into the mix and it's even trickier. But the yearning is, of course, still there.

I've seen plenty of plays, films (yes Moulin Rouge), books and poems on the theme of searching for love, but none had prepared me for the show at Colchester Arts Centre last night. I should have known it would be something out of the usual, when the flyer said "FAT is the journey of a gay, disabled man in search of his heart's desire. Pete Edwards uses distinctive movement, projected imagery, and spoken text to create a surreal narrative along the banks of the River Thames. Follow his quest to find the fat man, eat some spaghetti and live happily ever after."

The scene is set with an empty performance space, a screen at the back with video images, and a sign language interpreter stage left. The lights go down, there's a pause, and from the shadows appears Pete Edwards, a bald man of about 50, wearing only some very shiny, very short shorts, and a pair of Converse. (I immediately thought of my friend Severine, who wears those shoes.) Oh, and Edwards is in a wheelchair, and he's shuffling himself along, his limbs writhing.

So, what's coming up next I wonder? Will it be some in-your-face diatribe about how he can't use the Tube or get on a bus, because of the step? Oh no, it wasn't disabled specific. It was about isolation, and dreaming, and desire. Themes that touch us all.

As Edwards spoke, his script appeared as sur-text on the screen, above the images of the Thames. The programme explains that Edwards is a drama "workshop facilitator ... for people with differing speech". For the audience the sur-text was essential, as strangers to Edwards' speech could only pick up the odd word. (The sign language person seemed a little superfluous, but maybe I missed the point?)

The play unfolds, as we meet the fat man (only on screen), and they go back to his flat, for spaghetti bolognese and "afters". Now Edwards is completely naked, as we read quotes on screen, from Shakespeare, that are specially relevant to the play character's predicament. Rich fare indeed.

Now I may consider myself a right-on guy, with interest and some personal experience of disability, caring and access issues, and as a follower of gay culture (indeed, some of my friends are heterosexual and able-bodied), but there was much to learn about the HUMAN experience from Edwards' play. A remarkable show.

And for me the most moving images were Pete in front of a projection of a dance club scene, Pete's writhing linked perfectly with the mass of dancing bodies on the dancefloor. Just for a moment we can escape from ourselves.

Saturday, 4 December 2010

great beard, shame about the poems

Fred Slattern, possibly the second best poet in Colchester? There were forty entrants to the Poetry Slam, but only nine jumped the twin hurdles of snow and stage fright. Five got through to final round and just one won, with no other placings given. Fred was in the final.................. but didn't win.

Fred put on a good show, at the Arts Centre's Poetry Slam, finding the microphone rather empowering. Certainly compared with his usual spoken rants at nobody in particular, reading his shopping list or grumbling about bus-drivers, from his imaginary pulpit on street corners. And he had a crowd of fifty, rather then the usual none.

In the first round he covered the snappily titled "If James Dean had lived, would he have shopped in Waitrose?" followed by the mercifully short political piece "Council House and Van", and ending with "When?" - his take on the contemporary First Site gallery, and the storm over the cost and delays when the Town Hall was completed in 1902.

The judges, David J and Martin Newell, ooooooh, proper poets, were sufficiently impressed to give Fred another (metaphorical) soap box for Fred's little stories from the "I saw this, and I heard that" school of poetry. In the final round Fred covered his "Electricity" - linking country parks, local Elizabethan celebs and a big secondary school. Then it was "Colchester High Street", speaking in support of the grand old dame that the doom-mongers say is on its last legs. The final piece was "sandwich deal" commenting on our attitudes to Big Issue sellers.

Fred probably got more (intentional) laughs than any of the other entrants to the Poetry Slam, with his bumbling introductions and terrible poetry puns. His last ditch attempt to charm the audience and judges was to promise them his "Hilly Fields" poem as the winner's encore, but sadly it was not to be. All the competitors were beaten by Steve Lawton, who pulled off an astonishing hip-hop dj rap performance, a very worthy winner.

But Fred had the last laugh, with a group of punters in the audience approaching Fred after the show, asking to hear "Hilly Fields". Ever the showbiz star, and ignoring the standard advice to leave them wanting more, Fred addressed the back rows with his Hilly Fields yarn, to more applause! Fred's sitting in his lonely garret now, waiting for the bookings to come in....

And you know how good your poems really are, when people come up to you and say "I love your beard".


Related Posts with Thumbnails