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