Friday, 1 February 2019

Candlelight

This is an update and edit of a post from 2016 about one of those little-known and neglected festivals - Candlemas - that could do so much to help brighten our year, especially in times like the present, which are both literally and metaphorically dark and depressing. I plead guilty to "going on" about seasons and festivals, but as always I hope that I can help those who are sceptical or dismissive of religion to see that following and  commemorating the life of Jesus of Nazareth can give a form and pattern to our secular lives and provide opportunities for constructive reflection, which need not necessarily be tied to religious belief or practice.

Did you know it was Candlemas Day tomorrow, February 2nd? (or Groundhog Day if you prefer a more secular/american version) Did you know it's actually still Christmas? Well, to be accurate, it's still Epiphany, which is a season, strictly speaking part of Christmas, lasting from January 6th until this Saturday February 2nd - Candlemas Day.

Candlemas is a rather forgotten festival, marking the last day of the Christmas festivities, and traditionally the day on which a Christmas Crib is put away, having been left in place when all the other decorations came down on 12th night. In our house, the two cribs stay defiantly in place until February 2nd, having only been completed with the addition of the Three Kings at Epiphany.

Our beautiful Nativity scene, bought in Ireland in 1981.
Candlemas Day commemorates a perfectly credible event in the life story of Jesus of Nazareth: the Presentation of Jesus in the Temple, six weeks after his birth, as told in the Gospel of St Luke. It involves no miracles, no supernatural happenings - just an ordinary, but very moving, story of an old man's encounter with a little boy around 2019 years ago.

Holbein's Presentation of Christ
Presentation of a child was - still is - a rite of passage for a Jewish child, but the story is told of an old man in the Temple, Simeon, who on seeing the infant Jesus brought for Presentation, declared that he had seen the "Light of the World",  and could now die happy. His words give us the Nunc Dimitis, a familiar part of the traditional Evensong:-

"LORD, now lettest Thou Thy servant depart in peace; according to Thy word: for mine eyes have seen Thy salvation, which Thou hast prepared before the face of all people: to be a light to lighten the gentiles and to be the glory of Thy people Israel"

It's easy to see how this recognition of Jesus as the "Light of the World" developed into Candlemas: a festival of light in the depths of winter is an appealing idea that long pre-dates Christianity, so the Church took it over in the same way that Christmas and Easter were "christianised" versions of earlier festivals. What's surprising is that neither the Church nor the exploitative commercial world has ever made much of Candlemas in the way that happens with Christmas, Easter and various Saints days.

I think that's a shame. If ever there was a time of year when we need a nice little extra festival, it's surely the end of January/start of February. It's famously a depressing time of the year, with "Blue Monday" in mid-January  officially designated the most depressing day of the year. So surely, we should jump at the chance to have a little celebration at this gloomy time of the year. A bit of light in the darkness, just as Jesus was, and is, a shining light of goodness in an often dark and evil world.

In recent years, the church has adopted Christingle as a festival of light, but rather unwisely Christingle gets crammed into Advent and so gets rather caught up in the pre-Christmas busy-ness. Caught between the church's unwillingness to sing carols and celebrate during the restrained and dignified season of Advent, and a desire to anticipate the coming of the Light of the World, Christingle seems to my traditionalist mind  to be rather an incongruous intrusion in Advent.

So how about we start celebrating Candlemas a bit more? A nice, low-key affirmation of light in the darkness of February, with perhaps a wholesome winter casserole at a  candlelit table. How about a drink to celebrate the end of dry January? 

And as for music, well the playlist, both sacred and secular, is wonderful: Love Shine a light, Shine, Candle in the Wind, If I can Dream, Blinded by the Light, Ray of Light, any Nunc Dimitis, Lead Kindly Light (music composed by my 3 x Great Grandfather), Christ is the World's true Light - even Shine Jesus Shine if you really must. And in these cold dark days at the start of this year, 2019, the airwaves of mainstream radio are dominated by one of those brand new yet timeless masterpiece songs that could have been composed and loved at any time in the past 70 years: Jack Savoretti's gorgeously Godfatheresque Candlelight. How appropriate for the season! If you haven't heard it yet, click here and it'll charm you. I've added it to the fabulous Candlemas playlist at the bottom of this post.

It's not an original idea to mark Candlemas. It's a day steeped in folklore, derived from the idea that the end of winter may, or may not, be in sight. The Americans call it Groundhog Day - when this animal emerges from its burrow after hibernation and goes back in if it sees its own shadow - and this recognises the not unreasonable idea that if the weather is sunny and settled at the start of February,  there is every chance that winter will re-appear before Spring finally gets going. The same idea is present in an old English rhyme:

"If Candlemas Day be bright and fair,
then half the winter's to come or mair;

If Candlemas Day be dark and foul, 
then half the winter was over at Yule"

So let's celebrate Candlemas. Whether as a Christian wishing to acclaim Jesus as a shining light in an often evil world, like a candle in a darkened room, or just as a welcome relief from the doom and gloom of January and a chance to keep those Easter eggs at bay, it's worth a go.



Close the curtains, dim the lights, pour yourself a nice glass of red, light a candle or two, and enjoy the winter whilst looking forward to summer. Here's a Candlemas Spotify Playlist:

Tuesday, 29 January 2019

"Do the Right Thing" - Getting insulin injection technique right


Well, January is nearly gone, and this is my first new blog post of 2019. It’s been a busy time for me, and it promises to be a busy year, not least in the world of diabetes which has become such a big part of my life in retirement.

One of the things that has occupied some of my time and attention this month has been starting my role with the newly re-constituted @FIT4Diabetes Board, a group of healthcare professionals who work under that banner, supported by Medical Technology Company Becton Dickinson, to promote best practice in technique and safety for those receiving and administering insulin injections.

FIT Board Members
I was pleased, but frankly somewhat surprised and flattered, when I was asked late in 2018 to join the FIT Board as a patient representative. I am aware that I am one of the longstanding members of the online diabetes patient community, known directly or online to many fellow people living with the condition; I am also aware that I have been something of a minority voice in that community as one of those happily managing their condition by multiple daily injections rather than an insulin pump. The very nature and demographic of the online world gives a false impression of the ubiquity of pump and diabetes technology use.

Moreover, I am also very aware that I am no expert in diabetes, despite my 21 years of living well with it. Indeed, I have often said that I’m not really very interested in diabetes, nor do I have any great enthusiasm for clever technological solutions. I am very interested in people, and in doing my bit to support and contribute to the greater good, and so my participation in #GBDoc is based very much on an interest in the people with diabetes, rather than the condition per se.

However, having attended the first meeting of the FIT Board, I have realised that I do have something to contribute to this group and their work. At our meeting, we started with an illustrated presentation about best practice in injection technique: not the most comfortable viewing when sitting there as the only patient accompanied by three DSNs, two pharmacists and a GP! I watched with a mixture of amusement and embarrassment as one by one, my occasional or permanent bad habits in diabetes management were exposed:

Wash hands? X.

Change needle every time? X.

Rotate injection sites? X.

Prime the pen? X.

Wait ten seconds before withdrawing needle? X.

Dispose of used needle immediately in a sharps container? X.

OK, so some of these I am better with than others, but I doubt if many longstanding PWD could in all honesty tick every single one, every single time. My excuse? Well, it’s that life gets in the way! We’re often told that diabetes shouldn’t stop you leading a full and normal life, and I have certainly lived as full and as normal a life since diagnosis as before it.

However, “normal life” is often very busy: I think back to my hectic working days as a teacher, often in work from 7:30am until 6pm, with literally no break. Lunch was often snatched on the go, and dressed in a suit, with formal shirt and tie, eating in a crowded school canteen or grabbing a sandwich during a lunchtime meeting is not conducive to good injection technique. It’s hardly easy carefully to choose the right site, prime the pen, leave it in for 10 seconds etc. More likely grab the pen - untuck shirt under table - jab - pen back in pocket with top on over needle. And all that was until very recently (with the arrival of FreeStyle Libre) preceded by a messy finger prick test!

I am also very aware that discreet and hurried injecting is, rightly or wrongly, rather easier for a man than a woman: a dress and tights, still commonly a staple of formal dress for women in the workplace, gives no opportunity for easy, dignified exposure of a suitable injection site, and it is small wonder that many women with diabetes inject through tights – far from ideal, but a pragmatic compromise.

But does it matter?

Well, since my watching that awkward presentation at the FIT meeting, I have to say yes. Confession time: I have become very aware that the flabby bits above my waistline are not just a touch of middle-aged spread, but actually a textbook example of Lipohypertrophy, lumps under the skin caused by accumulation of fat cells at the site of insulin injections. Not life-threatening, far from the worst of the secondary issues which can arise from living with diabetes, but nevertheless  a very real and creeping threat to living well on insulin injections.

I wonder whose tum that is?? !!
Lipos develop because of poor site rotation over the years, and injecting into them significantly reduces the effectiveness of insulin, caused by irregular and incomplete absorption rates. Since that meeting two weeks ago, I have been carefully avoiding those over-used sites, and guess what? My insulin requirement has fallen, quite significantly!




I genuinely think that Lipohypertrophy is the Cinderella of diabetes issues. We PWD are all so bothered about avoiding hypos, dealing with the uncomfortable highs, pursuing elusive “flat lines”, over-reacting to the TMI that many of us now get from our Libres and CGMs, that we overlook the insidious damage that we are doing to our too-easy-to-reach tummies.

And judging by the responses to a quick Twitter poll that we did after the meeting, checking our injection sites and advising on injection technique are a frequently missing part of our consultations with HCPs in clinic.

Perhaps it’s time we all started to think rather more about injection technique, site rotation, size of needles etc. I spent the first 20 of my 21 years with diabetes using the 8mm needles that were the norm back in 1998, blissfully unaware that current thinking among experts is that 4mm are best for everyone, regardless of their BMI. And whilst my eyes are screened annually, my feet jabbed at every visit, questions asked about my “control”, my highs and lows, my erectile functioning, etc., nobody has ever asked about, let alone examined, my (frankly rather unattractive) midriff.

So please look out for tweets and posts from my wonderful colleagues on @FIT4Diabetes. They have been brilliant in not making me feel guilty about my own shortcomings in technique, but I have to say that, thanks to them, I’m going to try very hard to Do the Right Thing.

There you go, a title for this post  - from a song, as always: a classic from the heyday of Mick Hucknall’s Simply Red. Click on the title and enjoy a bit of 90s nostalgia, then sing it to yourself while you inject.

Wednesday, 19 December 2018

High: 21st Diaversary Musings

21 years ago today, feeling exhausted and battered from all sides after an unprecedented week off work in my sick bed with real ‘flu, I made an emergency appointment with my GP, alarmed by what appeared to be a sudden recurrence of my first bout of “proper” illness since childhood.

It was a dark, wet and windy evening, and I was far from full of festive cheer on that last Friday before Christmas as I sat in a deserted waiting room at the end of the day. A urine sample test revealed sky high blood sugar and the startling revelation that I was displaying the classic symptoms of diabetes.


The full story has been told before, here.

So my diabetes is “21 today” 😊


My "diaversary" always gives me a cause for some reflection, and these days, with a little more time to spare in retirement, I hope that those who know me as part of the online diabetes community will forgive me for the indulgence of sharing them publicly.

Here I am, 21 years on, having lived a third of my life, or half of my adult life, with an incurable, 24/7 medical condition which requires constant treatment and monitoring combined with an awareness of the effects and risks of activities as basic as eating, drinking, sleeping, moving or not moving.

Sounds pretty grim, doesn’t it?

But I’m an incurable optimist, a believer in silver linings, and whilst I don’t seriously believe that “everything happens for a reason”, I do believe that we all have the power to turn negatives into positives.

So 21 years on, I can also reflect on the fact that I have in recent years acquired activities, contacts, acquaintances and friends from within the community of people with diabetes, their families, and the healthcare professionals and medical companies who help to care for them. My life has been greatly enriched by them and I find it very hard to imagine what my life would be like without the diabetes community.

And I recently came upon some proof of this: a recent printout from my GP of my HbA1c level over the past five years revealed that the two most striking improvements in my level had occurred as a result of my starting to use flash glucose monitoring in early 2015 (no surprise there) and my starting to interact with the world of diabetes online in 2013. 

My HbA1c, 2013 -2018

Coincidence? Possible, but unlikely.

I think it is highly credible that I became significantly “better” at walking the tightrope of life with diabetes once I started to associate with others who do so, or who help others to do so. The knowledge that there are others out there who “get it”, who understand the frustrations and the triumphs, is of immense benefit, and I very much hope that in receiving that benefit, I have also contributed to it in my own small way.

So thank you to all out there in the #GBDoc and well beyond it: I wish I’d known you were all out there back in December 1997, but then again, many of you didn’t even have diabetes then. Indeed one who has become one of my best friends from the community was celebrating her first birthday on that auspicious date, and was herself still eleven years from developing the condition. Such is the fickle nature of diabetes, yet it gives a strong and lasting bond, borne of a very difficult adversity which in a very strange way makes me feel blessed. Blessed, at least, to have acquired diabetes in the modern world, not that of less than 100 years ago, when it was, in effect, a death sentence. Thank you, Prof Banting!

Faces of GBDoc
Of course, all my posts require an appropriate song as their title, so for this one I've landed on a song that is exactly the age of my diabetes, and which for me evokes memories of some dark days in January 1998 as I adjusted to a life of injections, testing and clinic visits: High by the Lighthouse Family not only gives a nod to my blood sugar level in late 1997, but also has a wonderful sense of optimism, a sense that better days lie ahead. As they did for me on that dark Friday in 1997.

"When you're close to tears remember
Someday it'll all be over
One day we're gonna get so high
Though it's darker than December
What's ahead is a different colour
One day we're gonna get so high"


Listen to the whole song here:

My best wishes for Christmas, 2019 and well beyond, to all those whom I now know as an indirect result of that fateful GP visit back in 1997.

Wednesday, 5 December 2018

Little Saint Nick: how Christmas got its Santa


Tomorrow (6th December) is the feast of St Nicholas - or Little Saint Nick as the Beach Boys referred to him in their 1973 festive offering. I wonder how many readers didn’t know that, or had forgotten. It's a festival that, like many, appeals to me I love special days and seasons. Every month has its particular feel; I enjoy each of the four seasons for their own atmosphere, and above all for the contrast between them.

I take childlike pleasure in the big festivals - family birthdays, Christmas, Easter, Shrove Tuesday, Halloween - as well as many forgotten, neglected or less universally observed days like Epiphany and Candlemas. Follow the links from those words to read my previous posts about the latter two if you haven’t seen them. Moreover, in my long career as a schoolteacher, I enjoyed the traditional landmark events of the academic year like start of term, end of term, Sports Day, Speech Day, Leavers’ Day etc.
Much of our day-to-day home and working life is by necessity routine and repetitive, so days which feel a bit different help to punctuate the year and to give us something to anticipate with excitement then look back on with warmth and affection.
These days, the retail and hospitality industry tries hard to part us from our money by promoting special days like Valentine’s Day, St Patrick’s Day, Mother’s Day and Father’s Day as occasions for buying cards, gifts and enjoying some special food and drink. Some decry the over-commercialisation of festivals, but I have no problem with it: good luck to hard-pressed retailers or pubs trying to get us to mark an occasion with a card, a gift or a drink.
I also find it interesting that as a society, we seem to crave collective events and enjoy celebrating them: the unexpected and refreshing success of the England football team in the World Cup in Russia palpably raised the spirits of a divided nation for a few heady weeks last summer, and the day of the Semi-Final, an ordinary Wednesday, felt like a public holiday, with beer and burger sales booming as millions with only a passing interest in football used the occasion to go on a night out or invite friends round for a party. Likewise, the wedding of Prince Harry and Meghan Markle in May proved to be a collective celebration in the early summer sunshine, with the kill-joy republicans suddenly going rather quiet as the nation rejoiced in the happiness of a personable couple with a happy knack of seeming connected to ordinary folk yet retaining the dignity and mystique of monarchy.
Yet we in the UK are not very well off for festivals. Despite attempts by some, we English still seem embarrassed by St George’s Day, tainted as it is by the impression that it somehow the province of the Brexiteer generation. I remain very uneasy about it and therefore indifferent to it, not least because the real St George (ethnically Greek by most accounts) had so little connection with our country. The Scots, the Irish, the Welsh, the French, the Americans and many others have no such problem with their own national day.
And unlike our European neighbours, we don’t seem to have been very good at appropriating religious festivals, secularising them and enjoying them, even without any of the belief. The French enjoy public holidays on Catholic feast days like All Saints, Ascension and Pentecost, despite living in a country where religion is constitutionally excluded from public life. A case of not having your cake yet still eating it!
And what about Harvest Festival? Here, it’s marked in churches and primary schools, but nowhere else. But the Americans have combined the notion of giving thanks for food and drink with gratitude for the founding fathers of their nation to create Thanksgiving, a celebration of family life, and which helps keep Christmas where it belongs in December.
At the time of writing, we have reached the time of year when we are being told “it’s Christmas” by everyone from the BBC to Noddy Holder, in a manner which is quite fun but risks having us fed up with Christmas three weeks before the day. Which is where St Nicholas - aka Santa Claus - should be able to help! St Nicholas Day presents a golden opportunity, taken by people in many other countries, to enjoy a little celebration ahead of Christmas.
Having lived in Eastern France for a year in my early 20s, I have ever since celebrated St. Nicholas Day on December 6th. When our children were little, we told them to leave a pair of shoes by the chimney, and in the morning it was filled with a Lindt chocolate Santa or some such. Just a little treat, but a nice way of teaching them the origin of Santa, and a little landmark on the way to Christmas. This custom is widely observed in some cultures.
So who was St. Nicholas?  Many people just know him as Santa Claus. While the modern figure of Santa derives from St. Nick, the real man behind the fictitious Santa was St. Nicholas of Myra. Born in 280 A.D. in Asia Minor, he lost his parents at an early age, but leaving him great wealth when they died. He was known for giving anonymous gifts to help those in need and was eventually made a bishop. He died on December 6th; thus this day is now St. Nicholas Day. He was apparently a generous and kind man, so the association with gift-giving seems obvious. The history of leaving shoes or stockings out for St. Nicholas derives from the story of his leaving small bags of gold for a man and his three daughters. In those days, women had to bring a dowry to a marriage in order to find a good husband. St. Nick heard of a man who had three daughters but could not afford the dowry. Without it, the daughters would most likely enter a life of prostitution instead of being able to marry. According to legend, St. Nick threw three bags of gold through their window at night, saving them from a life at a brothel and creating his reputation as the patron of gift giving.
The feast of St. Nicholas is celebrated around the world in various cultures. In Greece (as well as Albania, Serbia, and Bulgaria), St. Nicholas is celebrated on the eve of his feast day, December 5th. This day is known as Shen’Kolli i Dimnit (Saint Nicholas of Winter). In these cultures, this day is one of fasting. Most people abstain from meat or fast completely or prepare a feast to eat just after midnight.

In Belgium, the Netherlands and parts of eastern France, children leave their shoes or boots in front of the fireplace for St. Nicholas on the evening of December 5th. Often, they include a carrot or a treat for his horses, as legend has it that he arrived with his horses via sleigh or steamboat in these areas. (a tradition which has transferred into the “sherry and mince pie for Santa, carrot for Rudolph idea for Christmas Eve). 
St. Nicholas is said to arrive on December 6th and give children small gifts and chocolates. In the weeks leading up to this day, parents and grandparents tell stories of the legend, including a disturbing but popular addition: the story goes that three children wandered away and got lost, and a butcher lured them into his shop where he killed them and salted them away in a large tub. According to legend, St. Nicholas revived the boys and brought them home to their families. This story earned him his reputation as protector of children in France. The butcher (known as “Père Fouettard,” meaning “Father Whipper”) is imagined to follow St. Nicholas in penance and leave lumps of coal or even whips misbehaving children. In France, statues and paintings often portray this event, showing the saint with children in a barrel.
In Germany and Austria (and some other countries in this region), children leave out a boot for St. Nicholas and receive small toys, coins, or sweets. In these areas, St. Nicholas is commonly depicted as a bishop and is often portrayed on a horse. Like in the French story, a sinister companion accompanies him, in this case the even more terrifying demon-like Krampus. This beast is thought to punish children who misbehave and to capture particularly naughty children in his sack and carry them away to his lair. The Krampus has roots in Germanic folklore and its influence has spread to Austria, southern Bavaria, South Tyrol, northern Friuli, Hungary, Slovenia, the Czech Republic, the Slovak Republic, and Croatia.

So St Nicholas is a well-known legendary figure in many countries, and the connections to Santa Claus - gift giving, naughty or nice etc. – are clear, although the timing of his festival is coincidentally near Christmas, rather than because of the Santa connection.
However, the Christmas connections present us with a nice “extra” feast to help us get through the long, excited wait for Christmas. So put your shoes out and see what Little Saint Nick puts in them!

Friday, 30 November 2018

Autumn Almanac: The November #HappyDiabeticChallenge


The #HappyDiabeticChallenge which many have been following and contributing to on Twitter over the month of November, has proved to be enjoyable and interesting. I am pleased that I managed to post on every one of the 30 days, and I found it interesting to be made to reflect on these themes about diabetes. It seems a shame that they just drift away on a Twitter timeline, so I decided to curate my 30 posts into a blog post. I hope readers will enjoy seeing it all in one place, with selected illustrations and links. 


Of course, all my blog posts need a song title, so I chose a 60s classic from the Kinks to reflect the November theme and the idea of daily posts: Autumn Almanac. Click on the title and enjoy it while you read on...

So here it is - my #HappyDiabeticChallenge for November 2018:

Day 1 - Introduce Yourself: I'm Adrian, #T1D for the past 21 of my 61 years. Retired teacher, married with 3 adult children. Lover of gardens, cats, football, music, conversation and silver linings: diabetes has been a curse but also a source of new friendships & opportunities.

Day 2 - Type of Diabetes: I'm Type 1, initially misdiagnosed Type 2 at the age of 40 back when adult onset Type 1 was thought to be rare.

Day 3 - Pens, Pump or MDI: I'm unequivocally MDI 


Day 4 – Diabuddies: My definition of diabuddy is "Anyone who is, or who supports, a person with diabetes" And they bring a wonderful silver lining to the cloud of diabetes. I count several diabuddies among my very closest friends. You know who you are.



Day 5: Diabetes and Style: Hmmm. Not sure what that means. "Style" is not a word commonly associated with me. But I do think my @FreeStyleDiabet reader has added style, thanks to my #DeutscheDiabuddy @PEP_ME_UP



Day 6 - Biggest supporter: I wouldn't want to single out any of my #diabuddies who are such great supporters, so I'll say it's Mrs L. She's been with me for 19 years without D & 21 years & counting with. Always puts up with my "carry on regardless" attitude

Day 7 - The Bright Side: Two slides from my talk at #TADTalk2017 - "12 good things about diabetes" Tongue in cheek (so please don't get cross), but I hope it strikes a chord with some. It's a serious & exhausting condition, but there are positives.



Day 8 - Fave Diabetes Accessory: Well, it wouldn't be me if I didn't say my @FreeStyleDiabet, especially on a day with NHS access once again in the news. But my #JellyBabies box is also always with me.


Day 9 - Blood Sugar Roll Call: “Here Miss” 6.8 at 08:38am

Day 10 - Tattoos & diabetes: I don't have any tattoos so (with permission) here's a pic of my favourite, on the arm of my diabestie @ellierosehuckle. A #hummingbird, a thing of beauty with an apt & subtle nod to diabetes, evoking the role of balance & sugar



Day 11 - Low Carb Snacks: The words "low carb" seldom cross my lips and certainly never precede the word "snack". Crisps all the way for me.

Day 12 - Lancet Change Monday: I think I was cleaning my hens' teeth last time that happened. #gbdoc

Day 13 - Diabetes & Mental Health: I am VERY aware of my own good fortune. Meeting many fellow #pwd has brought home to me the struggles that so many others living with diabetes experience. I salute their honesty & resilience. It's a tough condition.

Day 14 - #WorldDiabetesDay: A perfect opportunity amidst all the excitement of this day to acknowledge & thank all the health care professionals, charities and advocates who do so much to help & support those living with all types of #diabetes

Day 15 - Diabetic cost of living: well I hope mine may be about to fall by £100 pm with yesterday's #Libre news. A timely reminder that, despite the embarrassing political chaos unfolding before our very eyes, we are luckier than many. #Insulin4all

Day 16 - My motivation? Remaining positive by trying to do the right thing & helping where I can.

Day 17 - Blood: Lick or Wipe. Fortunately a less common issue thanks to @parthaskar @cahmn @DiabetesUK @JDRFUK et al, but I'm 100% lick, then try to guess BG from the sweetness of taste. I used to be pretty good at it. Is that weird #gbdoc?

Day 18 - Society & Diabetes: you don't have to look far on SocMed to see the cruel or plain daft stuff that's said about diabetes. In real life, I tend to encounter just embarrassed ignorance tinged with sympathy. Like from that radio interview with the PM on LBC.

Day 19 - Diabetes Essentials: In reality, insulin is the only true essential (ask @PeteDaviesType1 for perspective on d-care from 50+ yrs ago) But accurate, frequent monitoring is essential in the context of a full & active life

Day 20 - Where are you from? Born & raised in Bolton, Lancs., of Londoner parents; lived short but significant parts of my life in Oxford, France & Liverpool; then past 32 years in rural Fylde, Lancs. All relevant & influential on my thinking & outlook.

Day 21 - Exercise & Diabetes: I'm by no means an active sportsman these days, but I keep active and I find activity, or lack of it, are VERY influential in trying to maintain reasonably steady BG levels.

Day 22 - What are you thankful for? The #NHS; supportive & loving family; good health other than #T1D; an instinctively positive mindset; not having #T1D during childhood & youth; and above all, the lovely friendships & opportunities arising from #gbdoc

Day 23 - Blue Friday. As opposed to some other colour of Friday which parts fools from their money. Bit stuck on this one.
How about a Blue Playlist? Click on the link and enjoy.

Day 24 - Fave Diabetic Book? I haven't read any book about diabetes since reading this after diagnosis in 1997. I've still got the book - it looks rather quaint these days.


Day 25 - Diabetic hero/heroine: Where to start? Banting & every researcher working on meds & tech; Docs & DSNs who care for & support us; diabetes charities; & #diabuddies who do their thing with practical/emotional support, techie expertise or humour.

Day 26 - Advice for Newbies: Difficult: there's rather too much advice out there! Perhaps best to say there's no "right" or "wrong" way to do diabetes. Take time to watch, listen to & observe others. Then choose wisely & never claim you've cracked it.

Day 27 - Fave Testing Finger: Outside of little finger. Why? Least used for other tasks I guess. Not that I do many fingerpricks these days thanks to @FreeStyleDiabet

Day 28 - Diabetes & Technology: I've had no cause nor wish to embrace pump technology, having found MDI perfectly adequate for my needs & lifestyle. I am, however, fully convinced of the huge benefits to all #PWD (inc #T2D) of some form of continuous monitor.


Day 29 - Goals: to live out a long & contented life free from complications. For others: the same, but with the hope for younger #pwd that innovations in medication & technology can minimise or even eliminate the burden of diabetes.

Day 30 - Beyond Diabetes: A great one to finish the month. I always look beyond diabetes in myself & others. In my friendships with #diabuddies, I always aim to keep diabetes in its place: a very deep & significant bond, but beyond diabetes is the person.

Friday, 9 November 2018

Stop Me (If you've heard it all before)

Stop Me (If you've heard it all before) This is a re-edit and repeat of a post I did back in March, but the growing frustration felt by me and others, both patients and healthcare professionals, about the postcode lottery of access to flash glucose monitoring leads me to repeat myself. My habit of finding a song title for all posts led me to a lesser known song from 1976 by a somewhat under-rated artist, in my opinion one of the finest and most expressively soulful voices - Billy Ocean. Just listen to the song by clicking the link if you're already bored, or listen and read on...

Yes, you have heard it all before, but I and many others won't shut up until fairness and common sense prevail.

Diabetes is a condition, not a disease. Type One may one day be “cured”, but not in the foreseeable future in a manner which is likely to be available to people my age and considerably younger. Those of us already living with Type One Diabetes should accept that we are likely to see out our days with our unwanted friend T1D; a cure is a desirable and achievable aim, but for those yet to be diagnosed in my view.

The best hope for those of us living with it is therefore to have access to the best possible assistance in living with it, and for that to happen, technology must increasingly be seen as an essential, rather than some kind of desirable add-on. 

condition not a disease: most diseases require drugs, either to reverse and cure them, or to make them bearable and prolong life. However, a condition which, if well managed, is not degenerative requires assistance with self-care to ensure that those living with it can do all that they would do without the condition, and not become a burden on an overstretched healthcare system.

In this sense (and I know that to say so is controversial) Type One Diabetes is perhaps a disability as much as a disease, and people with other disabilities, however minor, benefit from an increasing range of technological solutions to make their lives liveable and as normal as possible. Some examples are so common that they are overlooked: those with less than perfect vision wear glasses; those with tooth damage or decay get fillings and crowns; those with hearing loss use hearing aids; those with minor heart problems use a pacemaker; those who have lost limbs use prosthetics or wheelchairs. The list is endless.

So why the apparent unwillingness to use technology to help those with Type One Diabetes? There is at present great frustration in the Type One community at the postcode lottery of access to FreeStyleLibre flash glucose monitoring, a high-tech but relatively low-cost innovation which allows people with diabetes to carry out the all-important monitoring of their blood sugar levels in a manner which is convenient, non-invasive and infinitely more informative than finger-prick testing. There is suspicion and even hostility towards it from some, even within the healthcare profession, yet people with diabetes and many of those who care for them are overwhelmingly convinced of its short and long term benefits. The CCGs who are resisting accepting it to their approved listings for NHS availability, or who are paying lip service but imposing prohibitive criteria, cite its cost yet appear focused on just the headline up-front cost of around £70 per month. This despite the fact that it is already widely accepted that this cost is broadly comparable to that of an adequate supply of finger prick tests, without even considering the longer-term cost benefits of improved control.

However more significantly, I was struck by the views of a diabetes consultant who spoke at the Rise of the Machines event in February. He pointed out that there are many drugs in very widespread use whose cost is far greater. For example some treatments for Type Two Diabetes (a far more common condition) such as GLP-1 Agonists cost £68 -78 per month. This is a minor cost when compared with other drugs such as Infliximab which is used to treat auto-immune conditions such as Arthritis & Crohn's. Patients typically receive infusions every 8 weeks, costing £1500-2000 dependant on dose.

The consultant who spoke argued that FreeStyleLibre sensors at £70 per patient per month would have been accepted readily and with minimal dissent if it were a drug. The suspicion and even hostility comes from the fact of it being a piece of high-tech kit and as such points to the need for a change of mind-set.

I for one very much hope that we are on the cusp of just such a change. Technology is everywhere, and devices of a level of sophistication that would have been unimaginable even twenty years ago are now part of all that we do. Smartphones and satnavs for example, have taken over how we communicate and travel, yet would have appeared to be expensive luxuries in the recent past.

Those who regulate the access to therapies for people with Type One Diabetes need to realise that for most of us, we need gadgets as well as drugs. The “drug” for Type One is well-established, fully effective and aside from minor potential developments such as smart insulin, what we use today is fine. The unusual, arguably unique, thing about Type One is that a highly effective drug - insulin - keeps us alive yet threatens our day-to-day well-being 24 hours a day, every day. And we are required to self-administer and regulate the effects of this potentially lethal drug without medical supervision for 99% of our time. We survive and flourish best when helped by machines which can help us to monitor and react to the insulin which keeps us alive.

With the help of technology and machines, accessible to the many and not just the few, there is every reason for me to believe not only that with Diabetes I Will Survive, but that I and my many friends with Type One will live long and prosper. And we'll cost the NHS a whole lot less in the long run.

Deal??

Wednesday, 17 October 2018

Please Don't Let Me Be Misunderstood: keeping it simple


I’m just a soul whose intentions are good: so I want to start this post with a heartfelt and sincere disclaimer: this post is NOT having a dig at any group or individual, although I would fully understand if anyone felt that way.

I don’t do tribalism, and I think it is one of the saddest aspects of the contemporary world, not least here in the UK, that we seem to have become increasingly polarised and tribal. I feel very strongly about the political issues with which our country is struggling right now (autumn 2018), but I recognise and understand that others feel equally strongly the other way. And I still feel that in almost any situation, what unites is stronger than what divides, especially if you take the time to sit down, listen and empathise.

Such is the situation with diabetes. There are times when attitudes to diabetes can seem very “tribal”, and in the years in which I have connected with other people with diabetes online, I have seen many instances where there are clear divisions in how people feel about their condition and deal with it. Such divisions are often implicit and overlooked, but on occasions they come to the surface and result in the same sort of hostility and tribalism that afflicts politics, religion, sport, fashion - everything, in fact.

So why the disclaimer and long preamble? Well it’s because this post seeks to speak up for those living with diabetes who choose, or indeed are compelled by circumstances, to manage their condition without any technology beyond insulin pens and a device with which to monitor their blood glucose level. People for whom an insulin pump, let alone one combined with a DIY application to create some sort of artificial pancreas, is either an unreachable dream or simply something they don’t want or need.

I am, with one important exception (more of that later), one such person: I read the admirably enthusiastic and learned tweets and posts about diabetes tech with a paradoxical mixture of fascination and indifference. I am fascinated by what can be done, by what others have achieved through their own enthusiasm and expertise, yet not interested in embracing it for myself. I am on multiple daily insulin injections, always have been, and whilst I would “never say never”, it is hard to envisage a situation in which I would ever be offered, let alone accept, an insulin pump.

My diabetes story is largely one of being “perfectly well, thank you” - to the extent that for the first fifteen years or so of living with diabetes, I largely downplayed it and did little to connect with the world of diabetes beyond my own immediate needs. However, once I started to talk to and meet with others living with diabetes, my eyes were opened to how things could perhaps be different, and it suddenly seemed to me as if everybody else was either on a pump or trying to get one. Having become friends, online and real life, with other Type Ones from all over the UK, Europe and indeed the world, I have at times felt quite the dia-luddite in a group of pumpers, watching in awe as my friends discreetly tweak controls, check numbers and change cannulas. Some of the conversations I see or hear leave my head spinning, and when I recently saw the fabulously comprehensive online dictionary of diabetes technology, I realised just how little of it is of any relevance or even interest to me.

But therein lies the reason for my writing this post: I sometimes feel that the very fact that there is so much to discuss and enthuse about in the world of pumps, CGMs, looping and APS means that those of us who are happy and well with injections just sit quietly in the corner of the dia-room feeling left out, stupid, or both. We even feel perhaps a little guilty that we can’t be bothered (for that is in many ways how I feel) with anything more than a couple of pens, a monitoring device and a basic knowledge of how food and exercise affect insulin requirement.

So what is the exception to which I referred earlier? Well of course, it’s my enthusiasm for something that can tell me more than a snapshot of my blood glucose level, obtained at the cost of some pain and inconvenience. And for me, that is, of course, the FreeStyle Libre flash glucose monitoring system.

I have said this in a previous post, but I well remember at the first real-world meet-up of people with diabetes (#PWDC15) when Lis Warren, a veteran of 50 years’ experience of living with Type One, told a group of us that continuous glucose monitoring had been the biggest single leap forward in managing her condition. She said that CGM was the one thing that she would have been prepared to “mortgage her house” to get her hands on. Now a lot has changed since 2015, most notably with the success of Abbott’s flash monitoring device leading to its admission to the NHS tariff, but I think that there is an important point to be made here, particularly since my own enthusiasm for Libre might seem to be at odds with a post which appears to eschew diabetes technology.

My point is this: there are many who have criticised the Libre and questioned its admission to the NHS tariff, citing inaccuracy compared to “true” CGM, and its lack of alarms (which will to an extent be addressed by the forthcoming Libre 2), but to me, this is precisely the point. FreeStyle Libre is a good fit for my  ”keep it simple” approach to diabetes management. Yes, it is indeed a relatively low-tech piece of tech, with self-evident limitations, and that is why it has been adopted, relatively quickly, by our cash-strapped NHS. I can’t afford a “true” CGM, and neither can the NHS.

So what am I saying? Well I guess it’s me being my usual equivocal self. I want to speak up for those who manage diabetes the “old fashioned” way, using injections, and in the UK at least that is still the vast majority of Type Ones. Let's not forget that, particularly as the online world of #GBDOC might suggest otherwise. However, I also want to stress that even for those of us who embrace a low-tech approach, there is room and need for a little technology in our lives. But not so much that it takes over our lives.  In the end, I’m really not very interested in diabetes.

There, I’ve said it: but please, Don’t Let Me Be Misunderstood. There should be room for technophiles as well as technophobes: pumpers, loopers, prickers, injectors and even flashers (!)  have their place in the world of diabetes management, and those who can afford the cost and time have a right to choose that way for themselves or indeed for their children. But those who prefer to keep it simple have a right not to feel left out or guilty.

We all have our own way of dealing with this complex and demanding condition.

Candlelight

This is an update and edit of a post from 2016 about one of those little-known and neglected festivals - Candlemas - that could do so m...