Number 32 - Diabotics!

Originally introduced to the forum by Becca in this thread, members of the forum took up the challenge and posted their creations here. Diabotics are creatures created from the sundry detritus of Diabetes Mellitus – the packaging, needle tips, test strips, insulin cartridges, in fact anything that plays a part in management of diabetes of whatever type.

The creations provide a light relief from the day to day drudgery and diabetes, and can be a particularly entertaining way for children to have some fun despite the seriousness of their condition. Some brilliant diabotics emerged, and have been given their own website at diabotica.blogspot.com . They have even featured in a 2011 calendar this year!

Diabetes doesn’t have to be all doom and gloom. We have to deal with it every day and we can’t escape it, so why not lighten the situation and have some fun!

Post link: http://www.diabetessupport.co.uk/boards/showthread.php?t=4019

Number 31 - Jamie’s Food Revolution

Diabetes is about food, in the main, and how successfully or otherwise our bodies manage to deal with it in all its incarnations, whether encouraged by judicious choice and frequent activity, or with help from medications and insulin. As we have already seen, there are many misconceptions about what a person with diabetes can eat, or not, and these are often bolstered by sloppy reporting and poor scriptwriting in the media. The subject of diet, therefore, is pretty central to many of the threads on the forum.

When I was diagnosed, the chief principle I was taught was that I should simply follow a healthy, balanced diet, and this is what I have tried to do, with the occasional spectacular lapse! As your experience grows, you learn what foods are to be avoided, perhaps because they cause an unfathomable delayed spike, and what seemingly indulgent foods can be enjoyed regularly. In principle, this is the sort of diet everyone should be following, even if they are not diabetic, as it will help to keep them fit and healthy and less prone to a plethora of other potentially dangerous health issues.

Having diabetes and managing it successfully concentrates the mind on the subject of nutrition in a way that a non-diabetic person would probably find difficult to understand. As a result, people’s ideas about what is healthy and their attitudes to food can vary considerably, a fact clearly illustrated in Jamie Oliver’s series about school meals which won great critical acclaim for exposing the dreadful junk being given to many of our schoolchildren due to the twin evils of cost and convenience.

This thread concerns Jamie’s efforts to tackle the same issue, but this time in America, where, it seems, problems are an order of magnitude worse – children being fed pizza for breakfast with no alternative, ludicrous rules on the constituents of each meal without taking into account the true nutritional value etc. As always when poor diet and obesity are featured in the media, the word ‘diabetes’ crops up. But in Jamie’s series it is treated at a dangerous risk that may be avoided, and largely incidental to trying to get the public in general to embrace a truly healthy diet and lifestyle.

The series was well-received by forum members as an uplifting and entertaining programme, probably because it was offering a solution to the problem of diet in an educational and positive way, rather than the many documentaries that blame and condemn people and offer no practical way forward. More like this please!

Post link: http://www.diabetessupport.co.uk/boards/showthread.php?t=11010

Number 30 - Total Group loss so far!

Without going into the argument of whether diabetes, in particular Type 2, is caused by being overweight, or whether the excess weight is caused by diabetes, it is a fact that 80% of people are overweight or obese when diagnosed and could therefore benefit from a reduction in weight. But Type 1s don’t escape from the excess poundage problem either, as it is often the case that the injecting of insulin causes weight gain, and the treatment of hypos can make it difficult to stick to any kind of calorie-reduction diet as you cannot avoid eating extra sugary foods or drinks to overcome them.

Lucy123 suggested that we start up a special ‘Weight Loss Group’ (known to all as the WLG!) section on the forum so members could swap tips and encourage each other in their weight-loss efforts. The WLG has been a great success, with over 1700 posts in less than four months. This thread is a measure of that success, acting as a totaliser of the cumulative weight loss recorded by group members. From an initial 7.5 llbs, by Christmas we had achieved a total loss of 12st 9 llbs!

Unfortunately, I can no longer visit this section because I have been banned for posting pictures of Battenburg cakes, Jamaica Ginger Cakes, Walnut Whips and hotdogs! (not really, they can’t ban me!)

Post link: http://www.diabetessupport.co.uk/boards/showthread.php?t=11113

Number 29 - The Hospital

The portrayal of diabetes and diabetics in the media has been discussed many times, whether it is in short news reports, government campaigns in the press and television or through the fictionalised accounts in popular television drama. These short forays are often quickly digested and swiftly forgotten by the majority of Joe Public, apart from leaving maybe a lasting impression that diabetics caused their own problems, whether by the ingestion of copious amounts of sugar, or by being fat and lazy and indifferent to their own health (none of which, incidentally, is rooted in fact).

What can have a far greater impact, however, and give solid reinforcement of those misguided impressions, is the ‘in-depth’ documentary treatment of the topic. By presenting a series of worse-case scenarios to a backdrop of despair and outrage at the huge (financial) cost to the taxpayer, The Hospital, on Channel 4, managed to give a completely distorted impression of both the causes and effects of diabetes. In the context of the whole series, of which this was one episode, then maybe that judgement is a little harsh, as the premise of the series as a whole was to show the terrible waste of NHS resources spent on people who appeared incapable or unwilling to take responsibility for their health.

Taken in isolation, however, this episode seemed to have no balance – there was no discussion of how many diabetics worked hard to look after their health, and probably being far more diligent than the majority of the non-diabetic audience for the show. The whole episode had an undercurrent of blame, concluding with a sweeping statement that had nothing to do with the majority of cases featured in the programme. The consultant featured despaired that, with growing levels of obesity in the population, the number of cases like those featured would bring the NHS to breaking point. However, since the majority of cases involved young Type 1 patients in which obesity is not a risk factor, his closing remarks bore little relation to the preceding fifty minutes.

Unsurprisingly, therefore, the programme generated a great deal of discussion and produced a surprisingly wide range of opinions in this thread. Particularly outraged were the parents of Type 1 children who were completely blameless by any measure, and yet would now be associated once more with the impression that they somehow contributed to their condition. If only a more balanced programme could be produced (not as part of a series like this), in consultation with actual diabetics and vetted assiduously by JDRF and Diabetes UK, so that the public could be educated on the huge complexity of diabetes and dispel their prejudices!

Post link: http://www.diabetessupport.co.uk/boards/showthread.php?t=10205

Number 28 – Rachel’s Pharmacy Corner

Our members come from all walks of life, and we are very lucky to have Rachel, who works in a hospital pharmacy. She is our ‘Pharma Dalai Lama’, since she is always able to balance our frequent rants about our prescription nightmares with an informed view from the other side. She’s also rather knowledgeable about the many and various potions we are urged to consume by our physicians, and can provide down to earth explanations of their purpose and possible effects and interactions which may not always be quite so forthcoming or intelligible from the doctors prescribing them.

In this thread she gave us a guide to the pharmacy and how it all fits together, presented in her usual thorough, but humorous style. It can really help people to know what happens behind the scenes when our pharmacist gets things ‘wrong’ or doesn’t act as we expect, and I think a lot of people are more prepared to retain their composure having read her posts rather than exploding in a boiling rage when the wrong needles are given to us or we are asked to call back next Tuesday!

Post link: http://www.diabetessupport.co.uk/boards/showthread.php?t=11932

Number 27 – Statins

Welcome to the world of diabetes and a newly-discovered scepticism about the validity of some medical practices! Before I was diagnosed I had had the quite natural attitude that whatever a doctor said or prescribed for me was both necessary and proven to be of benefit to me. However, with the intimacy that diabetes brings on a daily, or even hourly basis, with aspects of your personal health, I discovered that it is important to question and sometimes even refute the doctor’s opinions. As I have learned from others on the forum this is often the only way to find the best possible solution for your day to day health, by tailoring the advice and medication given to suit your own particular response and knowledge of yourself.

Statins are central to the debate about cholesterol levels, fat intake, carbs versus fat and what does most good and what does most harm etc. This thread helped clarify many of the arguments for and against statins and expanded my knowledge about diet and the cholesterol/fat issue considerably, thanks to the input from many other members. On the forum, we do not give medical advice – we are not qualified to do so – but we can give pointers to sources of information that may help us to put forward valid questions to the medical professionals we encounter.

I have been surprised (although I probably shouldn’t be) by the limited knowledge of some GPs on various health issues. I shouldn’t be surprised because they have to know a little about an enormous number of complex topics, and can’t possibly be expected to research and keep up to date on all of them. If we are to stay as healthy as possible then it is up to us to take some personal responsibility and research things for ourselves, so we can then debate the issues with the doctor on an informed basis. This is one great thing that the forum has taught me, and I try to pass on to others.

Post link: http://www.diabetessupport.co.uk/boards/showthread.php?t=4115

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