Number 26 - Keep Crawling Forrest Gump!

Stories don’t come more amazing than this, and this one turned into a national human interest story appearing on news programmes and in newspapers up and down the country! Over the years we’ve had quite a few tales of where a pet has detected a hypo and helped a member, and not forgetting the famous Bruce, of course, who is both a hearing and assistance dog (and close personal friend and award winner!) to member Einstein. We also have Finnish member Moddey’s dog, being trained to help her young son, and many members have also related tales of cats and even parrots coming to the aid of their human friends!

In this post, member Ellie Jones related how her two dogs Ellie and Jones (wonder where the member name came from?) worked together to alert her to the fact that her husband had collapsed with a hypo. One dog, despite being timid, ran home to get help whilst the other dog stayed with hubbie. Not only this, but it was apparent that the dogs had led hubbie to a place where he could most easily be found. This, apparently, involved crawling on hands and knees, hence the title of the thread. Thankfully, he was found, the paramedics called, and the story had a happy ending.

Post link: http://www.diabetessupport.co.uk/boards/showthread.php?t=12524

Number 25 - Things that make you say what???

One of the tasks of the Moderators is to watch out for inappropriate posts, or posts by individuals whose motives may be driven by something other than an appeal for support and information. These posts can sometimes be very subtle, and it may take more than one post before it becomes clear that the poster is gearing up to publicise a website or a product. Often, links are hidden in posts which may seem to be pointless as other members won’t recognise them and click on them, but they are placed there to be picked up by search engine webcrawlers and bots, thus boosting their status in web searches.

Some, however, are stunning in their transparency and it is immediately clear that the poster has no experience or relationship to diabetes, or indeed any notion of the purpose of any of the various sections of the forum. Usually, these are simply deleted, but I did discover this post which was originally posted in the pumping section, then moved to the pregnancy section after being given the benefit of the doubt, remains behind and may as well be left as an example for all to see!

Here are some additional examples that got deleted:

Posted in the Events Section, where diabetes or forum related activities are normally publicised:

Britniam 15/07/2010 Events

What events affected slavery during the civil war?

i have to write a few paragraphs about some major events but what were some major events happened that affect slavery during the civil war such as a republican president being ellected. and be specific?

…and later that year by a supposedly different person:

Ebeneezer 9/11/2010 Events

What events affected slavery during the civil war?

i have to write a few paragraphs about some major events but what were some major events happened that affect slavery during the civil war such as a republican president being ellected. and be specific?

In the Food section:

1 Diabetes Diet

This rather valuable opinion

(What???!!!)

In the Off the Subject section (OK, I accept is was decidedly off-topic!)

Chauffeured limousine services in Poland

xxxxx is a full service limousine company founded in 1995 by the company Presidents, Tomasz and Ryszard . xxxxx is a part of the xxxxxThe Limousine Service - Warsaw, Poland.

Situated in the very heart of central Warsaw, is perfectly placed to attend to your limo requirements within minutes.

With our impeccable fleet of luxurious limos, ranging from executive sedans, exclusive limos, sports limos, SUV to the executive vans / MPV, buses and coaches, we offer a smooth, professional limo service with style and sophistication.

Post link: http://www.diabetessupport.co.uk/boards/showthread.php?t=9503

Number 24 - The Numpty Nurse/Diabolical Doctor Awards

As a person with diabetes I have discovered that managing the disease can require a great deal of contact with healthcare professionals. In a previous life I had very little contact with the medical profession and tended to assume that they were all pretty good at what they do and could be trusted to give sound advice backed up this sentiment as the professionals I have dealt with have, on the whole, been excellent both in their knowledge and method.

It still astounds me, therefore, to hear of the terrible horror stories and tales of utter ineptitude as related in this thread. If you are to manage your diabetes well, then you quickly learn a great deal about it and how it affects you in particular. Living with the consequences of a broken pancreas on a daily basis tends to reinforce the lessons learnt, and in a fairly short space of time you become a bit of an expert on the subject.

This knowledge, although it may not include the jargon and terminology, or scientific analysis applied by doctors, consultants and nurses, places a person with diabetes in a strong position to judge the competency or otherwise of their healthcare team. If you are on insulin then you learn through trial and error, with a little calculation and commonsense thrown in, how to dose in order to try and compensate for the food you are eating. You learn a great deal about diet, particularly in respect to carbohydrates in all their multitudinous incarnations, but also about things like fats and how they affect digestion or release of glucose. You learn about the best times to test your blood to try and trace your reactions to food, exercise, stress, insomnia, excitement and illness. You may test and inject thousands of times every year. Why then, do some doctors, who may otherwise appear intelligent and authoritative, think that they know more about it than you? More importantly, perhaps, why do they always seem to assume that you are testing too much?

How, in this day and age, can a person injecting insulin four or more times a day be expected to successfully manage blood sugar levels if they are told that they should test no more than once a day – or even once a week??? What happens to logic in the minds of those who utter such nonsense? How can a person newly-diagnosed with Type 2 be expected to successfully adapt their diet if they have no means of ascertaining how all their different meals affect them?

Any health professional featured in this thread should be thoroughly ashamed of the dreadful and sometimes dangerous things that have escaped from their flapping lips. Sadly, we must wonder about those many thousands of patients – and they must exist, surely – who receive such terrible advice and yet remain unaware that it is terrible, because they have been taught to trust the men and women in white coats unquestioningly. My hope is that, in the years to come and with wider acceptance of peer support such as the forum, fewer and fewer people will accept things at face value and learn to recognise the good from the bad. This thread should be required reading for diabetes professionals, and they should judge themselves honestly against it to see whether anything they have ever said or done would qualify them for a nomination!

Post link: http://www.diabetessupport.co.uk/boards/showthread.php?t=11550

Number 23 - Byetta Babes

Here’s another one of our long-running threads, and another great example of how the diversity of experience on the forum can come together to help people out, even when the circumstances are somewhat out of the ordinary. Byetta is an injectable medication that is chiefly for people with Type 2 diabetes. It has the advantage over insulin and some other forms of medication in that it actually aids weight loss, primarily it seems by making the user feel full more readily after eating.

Like many medications, it can have side-effects which may be quite severe to begin with, so it is extremely helpful for people new to it to be able to draw on the experience of others who are a little further down the line and who can therefore give an indication of how things may progress. It has been great to read how our group of Byetta veterans and neophytes have supported each other, and continue to do so, exchanging some great success stories. Unfortunately, not everyone has been able to cope with the side-effects, but this is also important for people to know. People can see that they are not alone if they are particularly badly afflicted by side-effects, so this can alleviate any feelings of guilt or failure which people can often feel if the only source of reference they have is their healthcare team who may often infer that ‘they do not try hard enough’ or ‘are exaggerating the effects’.

Primarily comprised of ladies, the thread was renamed the ‘Byetta Babes’ after it became clear that an initial enquiry about Byetta storage developed into a general discussion thread for advice and mutual support. Now nearly 400 posts long, it continues to be a great resource for our members!

Post link: http://www.diabetessupport.co.uk/boards/showthread.php?t=9445

Number 22 - Glucose Testing

How it used to be done!

For as long as I can remember (literally!) the forum has had threads concerning blood testing and the difficulty experienced by many in getting their doctors to prescribe the strips. This post was actually the start of the first thread on the topic, posted a day before the forum’s official launch day, and was the first real discussion thread on the forum.

There is so much that so many of the medical community do not seem to understand about testing. Of course, most are driven to restrict test strips purely because of the cost – if they were ten a penny, I very much doubt that such restrictions would exist. As it stands, test strips cost the NHS around £15 for 50 which, if you multiply by the number of people diagnosed with diabetes (of all varieties) comes to quite a considerable sum of money.

Often though, the arguments against testing are fallacious. Some GPs will argue that, particularly if a person is diet and exercise (D&E) controlled, then a six-monthly HbA1c test will suffice to indicate whether medication is required. Another argument is that a person may be led into obsessive testing and may become depressed and demotivated if the tests reveal high levels frequently. However, if testing is coupled with good education about how and when to test, and how to use the information obtained – primarily to discover what foods and in what quantities are tolerable in a person’s diet – then testing may lead to a happier, more flexible diet and lifestyle with a much-reduced risk of complications.

It’s not only those on D&E who are restricted. In fact this thread was commenced by a Type 1 person who was told they would be restricted to a ludicrous ONE TEST per week! For someone on insulin therapy, or certain oral medications, this is positively dangerous! Someone administering insulin needs to test before each injection so that they can calculate how much insulin to inject before eating or bed. For most, that means a minimum of 4 tests. Beyond this are tests needed when feeling low, feeling high, before and after exercise, before and possibly during driving, when ill – the list goes on. Even my own GP, who is normally very switched on about these things, was concerned that I was testing, on average, around 6 times a day.

I expect that this will remain an issue for as long as there is a need to test. Perhaps some time in the future we will all have accurate continuous glucose monitors, or some other mechanism for making sure our blood sugar stays within that narrow, acceptable band of between 4 and 7 mmol/l, and will no longer need expensive, disposable strips. It’s unlikely to happen soon though. Meanwhile, thousands of newly-diagnosed diabetics will get told ‘you don’t need to test’, ‘strips are too expensive’, and will be left confused and without the essential tool they need to build a solid foundation for their diabetes management. And so, I expect that threads such as this very first discussion will keep on appearing on the forum, unfortunately.

Post link: http://www.diabetessupport.co.uk/boards/showthread.php?t=32

Number 21 – Casualty!

As discussed in Number 12 – Does it Hurt? People with diabetes are subjected to a plethora of misconceptions about the disease, its origins and its treatment. It doesn’t help, therefore, to have prime time television dramas that include ludicrous storylines that only serve to further confuse and obfuscate the realities of living with diabetes and likely problems encountered.

I used to think that dramas were well-researched – particularly by the BBC – and that all that medical jargon that flows from the mouths of all our favourite medics on Casualty would possess a high degree of accuracy if compared to ‘real life’. Sadly, that notion has been undermined severely since I became more acquainted with the world of hospitals, medicine, and diabetes in particular.

It seems that the potential hazards of living with diabetes, coupled with a scriptwriter’s inadequate knowledge and research, or ‘artistic license’ to twist the truth, provide a rich vein of dramatic storylines. On one particular episode we were presented with the tale of a young girl caught up in some sort of bizarre boating accident. The girl was diabetic, Type 1, and had unfortunately been parted from her insulin in the course of the accident and it now lay attracting the attention of the deep water fish of some fictitious lake.

So what, you might think, diabetes is a common enough ailment and insulin is readily available in every pharmacists and hospital in the country. Ah! Not ‘Bentillin’, unfortunately, this is a uniquely formulated insulin that has no history of animal origin or testing, and is only available at Jacob’s Chemist in Penzance! From this point the storyline becomes ever more ludicrous, with the girl rapidly descending into diabetic ketoacidosis (DKA) and heading for coma. This, despite the fact that she probably hasn’t eaten anything since the accident so has no food digesting to boost her blood sugars. Of course, the reason must be that ‘Bentillin’ is a single-speed insulin – it must be, since this is the only insulin she (and her father) will accept, and therefore her blood sugar levels are being rapidly driven up by her liver with no insulin on board to cope with it. Oh dear! Why am I trying to rationalise this? The scriptwriter clearly didn’t!

There follows a moral dispute between the doctors and the girl’s father over whether they should administer ‘ordinary’ insulin, with a young doctor eventually taking it upon himself to administer this and she rapidly (instantly!) recovers! Becky kindly provided a transcript of the storyline in this post.

OK, it’s a TV soap-drama and most of the detail will have passed completely over the head of most people watching. Without the complete invention of something that doesn’t exist (Bentillin), however, there would have been no storyline at all. Joe Public, would have been left with the impression, however, that the story was fact-based and that there exists a chemist in Penzance that is the only provider of an insulin suitable for animal rights diabetics. Sadly, we have yet to see a diabetic storyline in any drama that matches reality – there is usually some dramatic device that leaps completely away from reality and invalidates the whole storyline. Neighbours, Eastenders, Home and Away, Coronation Street – all have had diabetic storylines that are either mangled versions of the truth, or conveniently forgotten once the focus has moved away.

This led me to the conclusion that Jacob’s had somehow perfected a blend of insulin and clotted-cream ice cream in some sort of cottage-industry medical facility, and wished to retain the monopoly by refusing to share the secrets of the process with the wider community – illustrating once again that the often ludicrous topics raised on the forum are rich pickings for poetic inspiration!

Post link: http://www.diabetessupport.co.uk/boards/showthread.php?t=6566

Number 20 - Why Diabetes Can Be Lethal!

When I first spotted the title of this thread my heart sank and I prepared myself for some awful tale about how diabetes had resulted in some terrible tragedy for some poor soul – no doubt what many were expecting.

But it wasn’t that at all – just smile4loubie’s picture of ‘Diabetes War’! Great that we can find humour in what can be a very wearing and depressing disease, and just one example among many that have been posted to the forum over the years, really helping to lift the spirits!

Post link: http://www.diabetessupport.co.uk/boards/showthread.php?t=12879

Number 19 London Meet, British Museum 21-11-2009

Who would have thought that when the forum first started it would eventually lead to members meeting up in ‘real life’? After a smaller initial gathering in Southampton it was decided that we should make a special effort to celebrate the forum’s first birthday. Because of the availability of transport links, and because it seemed an interesting place to go, we settled on meeting up in the British Museum, although as all present will remember not a great deal of that historic establishment was explored!

It was a strange experience initially, for me at least, to meet all these characters that I knew mostly by their User names only, and with faces only vaguely recognisable from the occasional avatar or profile picture. I think my biggest worry was that no-one would turn up, a secondary concern being that they might all be axe-murdering psychopaths, many of them armed with pointy insulin-delivering implements. Thankfully (to my knowledge) no-one turned up with an axe, and I was privileged to meet some wonderful, friendly, funny people that I felt I knew already from their various postings.

It soon became apparent that we were all exceedingly thirsty, so the more tech-savvy amongst the group set about using their portable telephones to locate a hostelry capable of sustaining our numbers for the remainder of the day – and on into the evening in some cases! Thus, many pints were drunk and profiteroles consumed at the Shakespeare’s Head Wetherspoons in Holborn – a venue chosen for our subsequent second birthday this year. It was like we’d never been away!

I think it is a mark of the forum’s success that people are prepared to travel great distances in order to meet up with others from the forum (from as far away as Glasgow to meets in Birmingham and London!), and spend a day together chatting sometimes about diabetes, but mostly not. Some true and lasting friendships have been made, and I’m sure even more will be made in the future. Perhaps it is partly the common bond of our relationship with diabetes that promotes such understanding between people, but beyond that they are all lovely people that I have spent some of the best days of the past two years with. This was our first big gathering, but there have been many more, and I have no doubt many more to come!

Post link: http://www.diabetessupport.co.uk/boards/showthread.php?t=4556

Number 18 - My Diet to deal with reversal of Type 2

What we eat is central to achieving good blood sugar control, and there are many, sometimes conflicting, ideas about what constitutes the best diet for diabetics, particularly Type 2. Type 2 diabetics who are not on insulin often face much different problems to Type 1s or Type 2s on insulin. For those on a regime of diet and exercise only, it can be difficult to know what to eat to avoid blood sugar spikes, and how to bring down unexpected highs, since they cannot just inject a correction dose of insulin. Similar problems are encountered by Type 2s on oral medications.

Thus, whereas insulin users are largely unlimited, in theory at least, in their food choices, it is essential that those who are not must pay very close attention to the foods and combinations of food that they consume. Member Wallycorker has, over the years, refined his own personal diet by trial and error, testing at regular intervals both before and after eating and eliminating those foods that caused spikes in blood sugars. This methodical approach has resulted in a regime that has brought his HbA1c readings down from mid-9s to low 5s over the past few years. In this post he explains how he has achieved this, with examples of his current meals.

This post has proved popular as an example for many who have been struggling to keep their levels under control by following the ‘standard’ advice often issued by dieticians – plenty of starchy carbs with every meal and lots of fruit and vegetables. It is, in effect, a low-carb diet, but one which Wallycorker has refined to suit his own particular circumstances and reactions to certain foods. It is also an illustration of how we are all different, since it is quite possible that some of the things he tolerates well in his diet would not be by another person, and vice versa – it is all about finding out what works fr the individual.

We have been fortunate on our forum that we have not been besieged by ‘carb wars’, as many other forums have been. Instead, there is a respect and acceptance that there is no one way to solve the blood sugar management conundrum. It must be discovered through experiment – with guidance – for each individual in order to provide maximum flexibility of choice and quality of life.

Post link: http://www.diabetessupport.co.uk/boards/showthread.php?t=6435

Number 17 - Comments in a Petrol Station

Another thread about the public’s perception of people with diabetes – bizarre comments made on the appearance or otherwise of ‘diabetics’ and whether we have a distinctive aroma or not! Many respondents to the thread were being kind, I think, when it was suggested that perhaps Joe Public was referring to the smell caused by excess ketones – a smell similar to pear drops and nail polish remover because of its acetone base. Of course, we don’t all go walking around emitting ketones with every breath, except maybe in the unusual circumstances of pre-diagnosis or during bouts of illness when blood sugar levels may be difficult to control.

There is, of course, something about a person with diabetes who is close to, or suffering from, a hypoglycaemic attack that can be picked up on by certain animals, but I doubt this is what Joe Public is referring to. And what are we supposed to look like? Horns? Fluffy pink feathers? A large ‘D’ for Diabetic tattooed on our foreheads? The thought of our apparent distinctiveness led me to write a poem on the topic – once again the forum proved to be my muse!

This isn’t something I had ever come across in my pre-diabetic days. Indeed, I only learned that a close work colleague and friend of mine had been Type 1 as long as I had known him after my own diagnosis, when he offered to help with information and advice. Clearly, he disguised his diabetic features expertly!

Post link: http://www.diabetessupport.co.uk/boards/showthread.php?t=8548

Number 16 - My Life, I nearly Lost It…

For anyone with diabetes, no matter how long you have had it, if you’ve ever felt the need to rebel, to ignore it, or pretend you are able to do anything a non-diabetic person can do without consequence, then you must read this post.

Most of the time on the forum the posts are about niggles and worries, fears and frustrations and often the absurdity that enters the life of a diabetic. This post, however, brings a very powerful and heart-rending story of how Dawn went from controlling her diabetes well, to rebellion and depression, and finally to hospital from which she almost did not emerge. Thankfully, for Dawn and her family and friends, and for all of us to whom she relates her experiences, she did emerge – and as someone with a new respect for diabetes and determination that she was not going to put herself in such a dreadful position again.

I still can’t read this without tears. I haven’t been down this path myself, but I can relate to everything she says in her story. She doesn’t post in the forum very often, but this one post means so much to all our members, and we wish her nothing but good health and happiness for the future. Please read her story.

Post link: http://www.diabetessupport.co.uk/boards/showthread.php?t=10602

Number 15 - If Only I'd Known Then…

Diabetes is a very complex thing to understand. A lot of the public’s perception of it is that you need insulin and you shouldn’t eat sugar – full stop! Live with it for a few months – or even a few weeks – though, and it quickly becomes obvious that it is oh so much more than that! We are learning new things all the time, whether we have been diagnosed for a day or a decade. Ideas of the best approach to treatments change all the time, new things come along, old ways are consigned to the dustbin of history, and our bodies decide that they will cohort with the Diabetes Fairy to bamboozle us on the simplest of everyday events – so nothing is ever set in stone.

However, with time and experience comes wisdom, and there are aphorisms we can employ to ease the path of those who follow – a list of ‘Dos and Don’ts’ that hold true for the most part, although they are always subject to change! This thread is about such enlightened realisations – the things we now know that we wish had been in the manual from Day 1, although we may not have understood them then, or possibly even believed them to apply to us. Examples are ‘Don’t assume diabetes is all about sugar – it’s about carbs!’, ‘If it tastes like full sugar coke, it probably IS full sugar coke!’, ‘You will make mistakes, don’t beat yourself up, and move on’ – you get the idea!

A fine collection from our members that merits reading again at those times when everything seems to be going haywire or at the very least, unpredictable – read it and nod, sagely…

Post link: http://www.diabetessupport.co.uk/boards/showthread.php?t=4451

Number 14 - It’s a boy!

The Diabetes Support Forum was a long time in the making. Although we have just (as of 14th November 2010) celebrated our second birthday of going live, it actually formed in the mind of its founder more than two years prior to that. Kati Admin is a Type 1 diabetic who has had the disease for well over 30 years, and yet she was aware that she had never actually met another person with Type 1 in her entire life! Type 1 is relatively rare in the population – about 1 person in every 300 will develop it at some stage compared to about 1 in 25 for Type 2, so perhaps it's not that surprising that encounters are rare. Even many doctors will never have had a Type 1 case to deal with, so often their knowledge is sketchy and out of date.

Kati had been a member of diabetes forums which were, on the whole, US-based, where although many of the problems were similar the differences in healthcare systems made a lot of the postings less relevant to a UK visitor. She decided that we needed a forum of our own here in the UK, one that was simply laid-out, without the clutter of advertisements, and that would bring together all people affected by diabetes in the UK under one ‘roof’. No distinction was to be made between types on the message boards so that segregation did not occur – everyone got to read each others posts and would learn those things we all have in common in our attempts to manage our diabetes.

A long campaign then began to get Diabetes UK on board with the concept. Plans were made for funding, software selected, design was commenced and testing took place. A couple of people got wind of the forum’s existence before the official launch, hence the appearance of our first member nearly a month before launch (see Number 1 – First Member). Our longest active member to date is ukJohn, who heard about the new forum when Kati mentioned it on a US forum – he’s still posting regularly, parrot on shoulder!

And thus the forum was launched! The first few months saw a rapid increase in membership, building to over 600 by the end of 2008 with around 3,500 posts in that time. Currently we get around 150 new members a month, with around 10-12,000 posts. In order to make sure that things ran smoothly and to make the forum a safe and welcoming environment, Kati appointed Moderators, selected from the regular posters of that period, myself being one of those invited to perform the role.

During this period, Kati had learned that she was pregnant! As her pregnancy progressed it became apparent that she was not able to devote the time she wished to manage the forum and so she asked that I step in as Administrator. I’d already acted as Admin whilst Kati was on holiday and was happy to take on the responsibility so Kati could relax and enjoy the remaining couple of months of her pregnancy. And so, in late June 2009, the baby was born! This post was the official announcement, with a picture of newly-born Zach, and was warmly welcomed by all the members. Since the birth, and with changing circumstances at home including a new job, Kati has been unable to return to her role as Admin, so has officially handed it over to me. I cannot thank her enough for what she has created – I have made so many friends and been given a wonderful purpose in life that was distinctly lacking when I was writing commission calculating programs for financial institutions! So many thanks to Kati, who I know still reads regularly, for all your hard work in those early days – although it probably seems like a doddle now that you are juggling a baby and a new career! Not literally juggling a baby, I hasten to add!

Post link: http://www.diabetessupport.co.uk/boards/showthread.php?t=2821

Number 13 - How long diabetic?

Diabetes, as far as we know, has been known about for thousands of years, but it is only in the last hundred years that it has been understood what it actually is, how it can affect the body, and how it can be treated. A hundred years ago someone with diabetes would either live a shortened life, eventually going blind, having kidney failure, limbs amputated, a heart attack or stroke or falling into a diabetic coma. This would have been the case for what we now call ‘Type 2’ diabetes. There were, of course, far more acute cases, usually in the young, where the patient would become quickly emaciated and probably die within months – what we now know as ‘Type 1’ diabetes. Usually, those with Type 1 would not live long enough to develop the longer term complications exhibited by Type 2s.

Then, in 1922 Drs Banting and Best isolated the ‘missing link’ that could finally be used as a treatment for diabetes – insulin. It was seen at the time as a miracle cure, although now, nearly eighty years on from that discovery, we know that it is a treatment for the symptoms and not a cure. There have been many developments over the years, with new techniques, new insulins, oral treatments for some types, advances in testing equipment etc. – all these have made the daily control of blood sugar levels tighter and more manageable, and the advances continue apace.

Having only being diagnosed a couple of years myself, I have been very interested to hear the experiences of those members who have lived with the disease for many years – even decades in many cases. This post shows what a huge range of experience we have on the forum, ranging from days, weeks and months to over half a century since diagnosis. Interestingly for the forum, it is not always the case that these long-term diagnosed people have the greatest knowledge. Often, they have grown up with diabetes and stuck to what they have always known, whether by accident or design, and it is fascinating to see how things that would be commonplace knowledge to more recently diagnosed people is a complete mystery to them. Through no fault of their own, it's likely that their doctors may have had the misguided belief that they ‘already know it all’ and have not sought to educate them on the latest advances.

It is only thanks to the medium of the internet that this information is now becoming widely available to all, and through forums like ours, experiences can be exchanged like never before. Many people with over 30 years of diabetes had never met another diabetic and it is great to see these experienced people join in our community, often transforming their lives in the process.

Post link: http://www.diabetessupport.co.uk/boards/showthread.php?t=4554

Number 12 - Does it hurt?

It’s perhaps a little unfair to say that the general public are, for the most part, ignorant when it comes to diabetes. I would say rather that they are ill-informed or poorly educated on the matter, often gleaning what wisdom they possess from the myths and misconceptions of yesteryear. I can’t blame them for that – I was pretty much the same when I was diagnosed. As I lay in the hospital bed in A&E and was told ‘We think you have diabetes’, my reaction was one of numbness, although possibly that was partly due to the fact that I was suffering the effects of DKA (diabetic ketoacidosis) and possibly only hours away from coma!

During the days that followed, however, my knowledge didn’t really expand that much. I could see that I was being given insulin, intraveneously at first and then by injection, and also that my blood sugar levels were being checked at regular intervals (my poor fingers!). I learned that double figure readings were not good, and a pre-meal below 7 was good. But I didn’t really understand or know anything about diabetes, it was only when I was able to leave hospital and satisfy my voracious appetite for information (and food, as I was severely underweight!) that I began to understand what it all entailed.

As such, we can’t really blame people for some of the things they say! This post brought many such sayings to the forum, most of which we were able to nod and agree ‘Yes, I’ve had that said to me!’ ‘Does it hurt?’ ‘Did you eat too many sweets?’ ‘I could never do that!’ ‘I’d die if I had to inject myself!’ ‘You’ve got the mild kind then?’ ‘Will he grow out of it?’ – all classics!

We’ll return to this topic in some of our future selections as it is a rich source of misinformation, occasional anger, wonder and humour on the forum!

Post link: http://www.diabetessupport.co.uk/boards/showthread.php?t=581

Number 11 - Forgive me for I have sinned!

We’ve all done it! The time comes when the temptation to go for that little (or huge) something that you just know is not good for you in any way just becomes too much!

People with diabetes become very quickly aware of the human body’s relationship with food, as has been mentioned before. If you were diagnosed as a child you would have been very aware as you were growing up that there were things you ‘shouldn’t’ or ‘couldn’t’ eat - your parents will have controlled as much as they could what was going into your stomach. However, there were no doubt times when you went down to the chip shop with your friends for a jumbo battered sausage or a pie buttie, or ate a whole bag of fun size bounties because you’d been holding back for so long.

Adults too feel the frustration. Whatever your attitude towards diet was prior to diagnosis, all of a sudden you’ve got to start reading the ingredients list on the packets, or rejecting things with red traffic lights on, or just looking straight ahead when walking past the shelves of things you just know are wrong when mixed with diabetes. I spent 49 years of my life eating more or less according to my whims or fancies – whole battenburgs or triple cheeseburgers, family bags of crisps, and pizzas with all the toppings backed up with garlic bread and a gallon of Tetleys.

Sooner or later, something has to give. To continue being ‘good’ starts to affect the quality of life – it’s all you can think about and it makes you gloomy and irritable, and extremely jealous of all those people who don’t have to think so hard. Thankfully, with today’s modern treatment regimes we can afford the odd relapse into our non-diabetic days and partake of the forbidden! But then – we feel guilty and worried and start dreading our next review or that meeting with the dietician that we are supposed to be keeping a food diary for! We feel we’ve let the side down and will be out cast and rejected by our fellow diabetics for our moments (or evenings/days/weeks) of weakness!

Thank goodness then for this thread from Rossi Mac! Here we can crave forgiveness for our lapses by confessing all and await the judgement and penalties meted out by our peers! Oh dear! It seems we are not alone after all, and this thread is still going strong after well over a year and fast approaching 500 responses! I fully expect it to continue, after all we are human beings and being good all the time would be very dull. Good to read what some consider a ‘sin’ – definitely some more sinful than others – and interesting to read what people desire and feel terrible about succumbing to!

Post link: http://www.diabetessupport.co.uk/boards/showthread.php?t=3311

Number 10 - I asked for a Diet Coke!

Sometimes a post comes along that really strikes a chord with a lot of people, and this post, posted by Sugarbum, certainly caused a stir! What many of the general public don’t understand is the effect of full sugar coke on a diabetic person’s blood sugar levels, and this extends to many of those running and serving in pubs, clubs and restaurants, unfortunately. The only time a person with diabetes can safely drink full sugar coke is when they are treating a hypo or when they have been able to prepare to cover the spike in levels beforehand. Therefore, to unknowingly drink it can be extremely dangerous, or at the very least make you ill by sending you up into double figures.

Thus, we all understood the anger and frustration felt when diet was asked for and the wrong version dispensed. This might sometimes be a genuine error, but anecdotal evidence has shown that it is often deliberate – even to the extent of pipes being swapped over as a ‘joke’. The assumption of anyone who deliberately gives the wrong type seems to be that ‘it doesn’t matter’ or ‘you’re not fat, why diet?’ or maybe ‘can’t be bothered’. Whatever the reason, it is wrong, poor customer service and potentially dangerous. If someone was already quite high, but thirsty, a full sugar version would send levels even higher at the risk of potential DKA (diabetic ketoacidosis) – all because of a simple error, ignorance or carelessness.

Thus was born the DiDka campaign – or Diet Drink Awareness campaign to try and educate these establishments to train their staff appropriately. A Facebook group was launched, a logo designed and volunteers recruited to spread the word. A mass testing was organised so that we could all test out the level of error in different parts of the country, to be achieved by using diastix to test the drink ordered for sugar content. One memorable test took place at the London Forum and Circle D Meet where Becky was served the incorrect type – big mistake barman! Another issue identified was the lack of suitable drinks available for people with diabetes to drink – often the choice is diet coke or water if you don’t want the drink to affect your levels, and this lack of choice was seen a problem particularly for parents when their children didn’t like coke.

The campaign has been a little quiet of late, perhaps this reminder will nudge it back into life!

Post link: http://www.diabetessupport.co.uk/boards/showthread.php?t=5968

Number 9 - The Face of Kinder

Off the subject is a pretty busy place most days, proving that people visit the forum for fun and not just to pose complicated questions about drug interactions and post-prandial spikes! One good illustration of this was when Aymes canvassed support of the forum’s members to try and get her young brother voted as the ‘Face of Kinder’ and get his face printed on their products!

Great support from everyone, including disseminating the details via other contacts, built the excitement to fever pitch (!) by the time that voting closed. Unfortunately, Barnaby didn’t make it into the top 30, but did make it into the top 100 out of several thousand children, so pretty good going! It would have been good if he had got his face on the chocolate products after getting support from a diabetes forum!

Post link: http://www.diabetessupport.co.uk/boards/showthread.php?t=3005

Number 8 - The New on Pump Thread

Initially, the forum had far fewer sections. This was a deliberate part of the design, so that people would post their queries and other messages chiefly in one place – the General Message board. This way, people are more drawn in to reading about the experiences, problems and successes of people who may have a different take on diabetes, yet are nevertheless all affected by it in one way or another. Some forums are very fragmented, with subdivisions of subdivisions, often making it difficult to know where exactly your own particular post fits in.

We all learn a lot from others, and one of the most important things we learn is about the characters of the people posting – who they are, how diabetes has affected them, whether they are seeking support for some aspect of their life that may not be directly caused by diabetes, but could be something we can share in and empathise with. This is what helps to build the community and from that spring the lasting friendships that have been formed over the past couple of years. New friends appear all the time, and old ones pitch in to help us when we are down.

Sometimes though, there comes a time when a need for a new section becomes obvious. In June 2009 serendipity stepped in and found several of our members about to start pumping at around the same time. There were many separate threads started up detailing peoples’ experiences and the forum became very busy indeed with talk of temporary basal rates, dual waves, bolus wizards and bubbles in your tubing! One such thread was Patricia’s ‘New on Pump’ thread, chronicling her son’s initial experiences on the pump – all the ups and downs, problems and successes and quite a few nervous nights of three am testing! The thread was a huge success running to nearly 300 posts and eventually it was decided to set up a new ‘Pumper’s Thread’ which took the focus off Patricia a bit (and the pressure!) and this too became extremely popular. Eventually, the Pumper’s Thread ran to in excess of 1,300 posts! Posts were still appearing there over a year later!

It was clear, therefore, that this was an extremely important topic that deserved a section of its own so that people would more readily be able to ask new questions or reference pump topics that had been previously discussed. It would prove difficult for new members to browse pump-related topics if they were hidden away amongst everything else on the General Message board, or even to read through the huge threads that the Pumping once mentioned here had become, so we set up the new Pumping section. Still a very busy part of the forum, the section has seen many new people introduce us to their pumps, plus those who had started all those months ago are now giving the others the benefit of their, by now, extensive experience!

Post link: http://www.diabetessupport.co.uk/boards/showthread.php?t=2420

Number 7 - What did you eat today?

Diabetes is all about food really and there’s so much advice about what your should and shouldn’t eat that it can be a bit of a minefield trying to work out what’s best. As diabetes management is also a very personal thing, no one way of eating is suitable for all and people often feel they have to restrict their diet, or are given standard dietary information like ‘5 fruit and veg a day’ or ‘eat plenty of starchy carbs’.

It was very illuminating, therefore, when Bev started up the ‘What did you eat today’ thread in June 2009, which quickly gained great popularity and was hugely interesting to read what food choices everyone was making. The thread eventually reached just short of 300 posts in a month, and was a great source of ideas, particularly for lunches I think as these can often be problematical when you may have limited time to prepare and eat.

Post link: http://www.diabetessupport.co.uk/boards/showthread.php?t=2548

Number 6 - Injecting in restaurants

This is a topic that has raised its head many, many times in the forum’s history, but I chose this one particular post because it also spawned many other discussions at the time, and still has echoes in new threads nearly two years after it appeared! The premise was this – should a person who needs to inject insulin prior to eating in a public place vacate their table and find some hidden, possibly unhygienic place like a toilet to perform the deed in order to protect the imagined sensitivities of the general populace? Or should they discreetly inject without fuss, and be happy to explain should anyone question what they were doing?

Although chiefly a concern of those who actually have to inject insulin before eating, it also brought into the debate how a diabetic who doesn’t should regard it in public, and also how Diabetes UK’s own Balance magazine should provoke the debate. In this instance, a letter by a Type 2, non-injecting ex-nurse from Birkenhead who had written to Balance complaining about how ‘disgusting’ injecting in public was. The response was uproar – firstly that Balance should publish such a letter and also that an ‘ex-nurse’ who was diabetic herself should have written in such insulting and inflammatory language. The Balance editor hid behind the disclaimer and the argument that it ‘stimulated discussion’, but compounded the problem by publishing a follow-up letter in subsequent issues.

This was, in my opinion and that of many other members of the forum, a low-point for Balance, as many questioned whether they wanted to continue supporting an organisation that appeared to wilfully overlook the concerns of its members. My own response was in verse in ‘Nursing 101’ and the sequel ‘Nurse Unbalanced’, and also provided more rich pickings for ‘Disgusted Nurse Gets Just Desserts’, so I have to admit that our errant nurse did inspire me quite a bit! The topic was further explored when a news story in a Wigan newspaper related how one customer had complained that injecting in a restaurant in front of his children was ‘worse than farting’ – hence my poem ‘Farts versus Injections’. Thankfully, Balance has improved a great deal since this debacle.

I’m sure this topic will keep on appearing until we are all cured, or at the very least have pumps!

Post link: http://www.diabetessupport.co.uk/boards/showthread.php?t=881

Number 5 Little Miss Chatterbox!

The forum would be a dull and empty place if people didn’t post their own thoughts, questions and messages of support on it. One of our more prolific members is Steffie, who is currently closing on 20,000 posts and thoroughly deserving of her unique title of ‘Little Miss Chatterbox’! From this very first post she has contributed enormously to the forum on every topic, from welcoming in the new members to offering the benefit of her knowledge and experience, and quite a few comments on the calibre of numerous X Factor contestants!

It has been interesting to see how the support and advice of others has helped Steffie to learn to manage her diabetes, and gain better care from her healthcare team. Her knowledge of the forum’s history means she is often able to provide links to useful past discussions that may be pertinent to new threads, and she helps me on frequent occasions by spotting unusual and suspicious posts at the earliest opportunity. I’m also very much aware of the support she gives others via email and private message, if they have been absent for a while or have important or difficult things happening in their lives.

She’s a real gem, and we’re so happy she joined us!

Post link: http://www.diabetessupport.co.uk/boards/showpost.php?p=7655&postcount=7

Number 4 - Jessica’s birth story

Diabetes and pregnancy can be extremely difficult to manage together, with insulin requirements changing hugely and blood sugar levels becoming extremely unpredictable. One of the greatest joys of the forum for me has been in following the stories of the many ladies who have announced their pregnancies there, and seeing all the fantastic support they have received from others. Much advice has been provided by experienced Mums, but also there have been several occasions where more than one member has been at a very similar stage with their babies, so have been able to compare notes and tips, and also to ensure all our mums-to-be have been getting the best possible care.

I’m not sure if Emma31 was the first to announce her pregnancy, but she is very representative of this life-changing event. After all the ups and downs, Emma was finally able to relate the story of beautiful baby Jessica’s birth, which was fraught with difficulty, but with the outcome we all wanted to hear! She is rapidly approaching her first birthday now! Since then, many more ladies have announced their pregnancies, so the wisdom and experience of others is a constant source of information and support and I'm sure it makes the world of difference to all the ladies to have this.

Post link: http://www.diabetessupport.co.uk/boards/showthread.php?t=6141

Number 3 – Bev’s Big Night In!

Diabetes management and food are inextricably linked, whether you are on insulin, tablets or controlling your levels by diet and exercise. What is also apparent is that no two people with diabetes are the same, so reactions to different types of meals can vary enormously. There are some general guidelines we can follow to try and reduce possible spikes and hypos, but our tools are crude – even an insulin pump can appear clumsy in comparison to the reactions of a healthy pancreas.

Nevertheless, we do try to have as much variety in our diets as possible! The current thinking is that we can eat anything, as long as it is in moderation, and we shouldn’t deny ourselves the odd ‘treat’. Member Bev came up with the excellent idea of forum members attempting to apply the diabetes ‘guidelines’ to a number of popular, but notoriously difficult to predict, meals and recording blood sugar levels over a period of up to five hours after eating. The results were very interesting, and remain as a useful record for others to refer back to and maybe pick up some tips and tricks when trying the meals for them selves.

We got through a variety of meals: Pizza, Spaghetti Bolognese, Fish and Chips, Baked Potatoes, Fahjitas, Curry, Shepherd’s Pie and Lasagne, and it was very interesting to see the huge differences in blood sugar levels recorded by people, especially when different treatment regimes applied. Even pumps proved difficult to get right with some of the meals, despite the extra precision they ostensibly provide! Some people came to the conclusion that there were certain meals that were off the menu for good, others were pleasantly surprised at how they had reacted. Overall, an excellent addition to the forum, once again strengthening the sense of friendship and community that is one of the hallmarks of our forum.

Post link: http://www.diabetessupport.co.uk/boards/showthread.php?t=7311

Number 2 – The Glucophage and Glargine

In September 2009 I thought it might be a good idea to have a thread where people could just pop in and have a chat about anything in general, and to escape from their diabetes for a while. What better place, therefore, than a virtual pub, where you could drink and eat whatever you wanted with absolutely no effect on your blood sugar levels! The pub was a great success, and contains the highest number of posts of any thread on the forum to date, at 9977 posts, and approaching 100,000 views!

There had been some talk of including a ‘chat room’ facility in the forum, but I think, for an environment like ours, having posts is a better idea. Chat rooms are hard to monitor, may not have enough people present for any kind of conversation, and leaves no record behind of the discussions. Although much of the chatter in the G&G may appear inconsequential, I think it illustrates how much of a community the forum has become. People choose to just pop in, order a pint of vodka and a Victoria sponge, or whatever, and relax amongst like-minded people. There’s a great deal of humour too, plus those occasions where the ‘customers’ just want to let off steam. I think having such a place has helped many people feel less isolated with their diabetes, and that is one of the principal reasons for starting the forum in the first place. I know that many people will ‘eavesdrop’ on the conversations, even if they don’t actually post themselves, and this can be a comfort in itself, to see a group of friends passing the time together, often bouncing banter off each other and escaping the stresses of the day.

Six months after opening, the pub was beginning to look a little tired and grubby, so it was closed for refurbishment and re-opened as the Banting and Best – another highly successful thread with over 6,000 posts and almost 120,000 views. The latest incarnation moved away from the sawdust and spitoons and established itself on the tropical island of St Bedeia, so we can all escape the impending dark, winter nights!

Post link: http://www.diabetessupport.co.uk/boards/showthread.php?t=3929

Number 1 - First Member

Nearly a month before the forum was officially launched we had our very first member! Joannaj joined on the 17th October, 2008, the official launch date of the forum was World Diabetes Day – 14th November 2008. After disappearing after her initial post, she returned again with a quick flurry of posts in April 2010 but hasn’t been heard from since then.

Since that very first member joined we have acquired well in excess of 3,000 members before the forum celebrates its second birthday. Some members have stayed in touch, posting regularly throughout. Some posted frequently for a while and then reduced their contact to the occasional visit, although I know that many still read on a weekly, if not daily basis.

In the first two years of the forum we have banned 70 members, the vast majority for posting inappropriate material or links. This is a tiny percentage of the total membership, and seems mostly to emanate from India, with a few Aussies who see our forum as the ideal place to market their drain clearing services!

Post link: http://www.diabetessupport.co.uk/boards/showthread.php?t=11