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