Circle D 2nd Anniversary and Forum London Meet

Well, it finally happened on Saturday, April 24th - thirty members of Circle D and Diabetes Support Forum got together in London to celebrate Circle D's 2nd birthday! Weather was gloriously sunny, and actually warm - hot even! I met up with Tom, Tez and Shiv at Victoria and, once Tom had recovered from the hypo he was having (!) we set off, map in hand, to make our way over to Leicester Square. Thankfully, the route was fairly straightforward, or so we thought: up Buckingham Palace Road, onto The Mall, round Trafalgar Square and up Charing Cross Road. Well, it mostly went to plan, except that The Mall and in particular the area in front of Buckingham Palace was packed with crowds of tourists watching the changing of the guard. We decided to walk through St James Park, very pleasant and peaceful and a far better option to travelling underground on such a lovely day!

After a little unplanned detour we finally emerged onto Leicester Square where I managed to spot Yates down in the bottom corner, my brain still just about functioning as the jelly babies kicked in after my en route hypo. Shelley was waving like a woman possesed and difficult to miss! And so the day was set for the next six hours for me, and much, much longer for a few of the others who partied on into the night. Shelley was the perfect hostess, making sure that everyone was welcomed and introduced. There was a real mix, in part due to the fact that Circle D is a group for 18-30 year old diabetics and who therefore provided much of the 'youth', plus one or two old timers (erm, like me!). Becky had travelled furthest on the day, from York at some ungodly hour, and Steff had travelled furthest overall having come all the way from Geordieland.

It was great to renew acquaintances and to put faces to names of the people I hadn't met before. Everyone had a great time, except maybe the poor barman who served Becky a non-diet coke when she'd ordered a diet one - diastix were being used in abundance to test the presence of sugar in 'diet' drinks, a frequent problem for diabetics. Bar staff don't realise the possible impact of a full-sugar drink on a diabetic person's blood sugar levels which can become unexpectedly, and sometimes dangerously, high. I finally got back home at around 9:30 pm after a good coach journey and a fortuitous encounter with a Number 3 bus as I was just passing the bus stop! Well, pictures speak louder than words, especially when they move, so here is Becky's wonderful video of the day's shenanigans:

And a selection of photos - mostly by Shelley, but a few of mine too!

Diabetes Support Review of the Year 2009, part 1

As you may know, I am an Admin of a Diabetes UK backed support forum, Diabetes Support UK. As the year draws to a close, I thought I would write a review of what has been happening there over the year to give an indication of the topics uppermost in our member's minds with regard to diabetes in all its many incarnations. This is Part 1, as it is turning into a larger task than I first envisaged, so much has been going on!

It’s been a busy time for Diabetes Support’s first full year since inception, so I thought I would write a little review of what’s been happening. Over 5,000 threads have now been added, and we are approaching 1,800 members. Number of posts per month climbed from around 2,800 in January, peaked at over 10,000 in July, and have been between the 7,000-9,000 level in the months since then.

So, what have we all been talking about and reading? I decided not to do a month-by-month review as many threads have run over a period of many months and in some cases are still being added to. Instead, I thought I would write about the threads that have been viewed most often through the year, as these threads represent the ones that most people read, if not actually respond to.

The stand-out thread for number of views is The Pumper’s Thread’, with (currently) over 23,000 views. This thread variously chronicles the experience, joy, despair, pitfalls and superb advice of a number of our members new to the use of insulin pumps, or long-term pumpers offering the benefits of their knowledge and experience (particularly Adrienne – you are a legend!). In some cases, it was about adults new to pumps, in some cases parents with a child on a pump, all supporting each other brilliantly as they got to grips with the complexities of the machines. Prior to the introduction of this thread, a number of people had been diarising their own particular journies, and these separate threads also constitute some of the most read threads. Eventually, it was decided to introduce a sub-forum for pumping so that new members would find it easier to find information and advice about particular problems.

Second on the list for most-viewed thread is the ‘No Carbers/Low Carbers’ thread with over 12,500 views. As on many forums, there is a big debate on the right approach to diabetes management with regard to carbohydrate consumption, and this can often become polarised when enthusiasts for one person’s experience are at odds with another’s. We did experience some conflict on the issue, but I am very happy to say that the vast majority of our members respected the views of others, absorbed the information being given, and applied it to their own particular situation. As always with diabetes, you need to learn about the options and discover what works best for you in balancing your dietary and lifestyle choices with your need to maintain good levels of blood glucose.

I have to take the blame/credit for another of our most-viewed threads ‘Oh bother this blooming basal!’, which started off with me bemoaning the constant and unpredictable changes in my basal insulin requirements as I sought to find a dose that would prevent the threat of night-time hypos whilst keeping my background glucose levels nicely within range. I started the year at twenty units of Lantus, went down as low as six, and am currently of eight.

The next most popular threads, unsurprisingly, contained discussions about food! A very popular thread, added to daily by many members, was ‘What did you Eat Today?’. Here, members wrote up their menus for the day so that all could see what kind of healthy (or otherwise!) options were being consumed and in what quantities. The thread was very successful in introducing everyone to ideas of what they might be able to try, and also where people slipped up and sinned! Which brings me to the next most popular ‘Forgive me, for I have sinned!’ Here people have talked about their little indiscretions and major rebellions in their diets, confessing them to all and in the act informing everyone that it’s OK to have a treat every now and then – don’t beat yourself up about it! We’d all go mad if we weren’t allowed the occasional sin, and as long as we keep in mind the big picture and don’t become complacent, the whole world isn’t going to end because of a few profiteroles!

Member Wallycorker (aka John!) has kept his thread ‘Please support my diabetes petition’ in the limelight and has attracted a lot of attention, and hopefully enough signatures to get it to the point where Number 10 have to respond. It concerns the advice being given to newly-diagnosed people regarding diet and the allocation of test strips on prescription, particularly to Type 2s. This topic has also been discussed many times over the past year in various threads, in particular regarding the restriction of strips by GPs to Type 2s on a regime of diet and exercise. If they are not allowed to test, how do they know how their efforts and diet are affecting them? The Hba1c test can only give a partial answer. The real issue, of course, is cost, as the strips are expensive, but for many they would give improvement in levels, greater flexibility in diet and most importantly with a chronic condition like diabetes, peace of mind.

So what other things have been important to everyone? The forum meets in Southampton and London generated a lot of interest, and were deemed by all attendees as a great success! More meet-ups are planned for 2010, and now that we have a better idea of what works and what doesn’t hopefully they will get even better!

Of course, one of the big topics during the year has been the issue of injecting in public. This issue gained increased attention after the publication of the infamous letter from the retired nurse in Diabetes UK’s own ‘Balance’ magazine, saying how disgusted she was on encountering the practice. Unsurprisingly, there was considerable uproar on the matter, with quite a lot of members objecting to the publication of such a letter in a magazine that diabetics themselves pay for and should therefore find supportive, not offensive. The issue was further inflamed by the subsequent publication of more invective from the nurse in a later edition of Balance. My own ‘Nursing 101’ also gained a good response on the topic!

Part two of the review tomorrow, lots of other subjects discussed over the year!

London!

Today was the eagerly anticipated meeting of members of diabetes support forum. The plan was to meet up in the British Museum and then find a local watering hole capacious enough to accommodate a crowd of about 15 to 20 diabetics! Katie and I travelled into London together, and walked the mile or so to the British Museum from Waterloo railway station. Thankfully, the weather was clear and sunny, and the views across the Thames on either side of Waterloo Bridge were truly superb, although our initial steps across the bridge had been somewhat blighted by the concrete monstrosity of the Southbank Centre – how could an architect ever have thought that that was beautiful? Hideous!



We did get a little lost along the way, but not too far off our route, and managed to find the British Museum without too much drama, although I’m not sure I inspired much confidence in Katie! The arranged meeting place was by the souvenir shop on the west side of the Great Court. I have never been in there before, and was hugely impressed by the magnificent Court. As we were arriving a little later than the others, they had already moved on from the shop, so we wandered round the west side until we came across some tables at which many people were seated. Casting my eye over them, I recognised one of the forum members, Rossi, almost immediately so we made our way across and I introduced myself and Katie. How strange to meet all these people that I had been chatting to on the forum for months, and put faces to nicknames, and names to nicknames!

As it was approaching lunchtime, we decided to forego an exploration of the Museum, and instead set off in search of a pub for some food and drink. Our first choice, The Museum Tavern, proved unsuitable, as it was too small and many of the tables were already taken, so a quick search by Amy was made to find a nearby Wetherspoons – generally large establishments, with a good choice of food and beer at very reasonable prices. We settled on The Shakespeare’s Head, admirably suited to our large party. Wetherspoons are also good pubs for diabetics, since they provide full nutritional data for their food, essential for the carb-counting insulin users amongst us!



And the rest, as they say, is history! I won’t go into all the conversations we had, as there were too many, but I do know that my voice was starting to go from all the talking as the afternoon drew on! A most enjoyable afternoon spent chatting and imbibing until the time came for Katie and I to leave. Very reluctantly I might add, but it was a condition of our tickets that we had to catch a certain train – which we managed to do by a very slim margin! All in all, a very enjoyable day, meeting some terrific people, and definitely an event to be repeated!

Bad diabetics eating profiteroles!


Such innocent looking souls!

Diabetes Support Forum UK

Diabotics Gluco Jon and Polly Urea celebrate World Diabetes Day!

Today is World Diabetes Day. A year ago today, a new forum was launched in the UK, supported by the charity Diabetes UK (although not widely publicised enough still!). Having been diagnosed just a few months before, I had visited a few other forums, but was largely perplexed by their complexity, number of sub-divisions, varieties of diabetes, diet and control methods, plus the sheer number of members and daily postings. So, it was refreshing to encounter a new, home-grown forum that I could get into from the beginning.

Things started expanding rapidly from the start, with between 10 and 40 new members joining every day and introducing themselves. I’d read up a lot on diabetes care since my diagnosis, including studying an Open University course on the subject, so found my self in a position to be able to offer suggestions to the other members in answer to their questions. Plus, I was familiar with the mechanisms of a support forum, having been a moderator on another forum, unrelated to diabetes, for many years. I also had a lot of time on my hands, and an eagerness to learn what I could and discuss experiences with the other members. As a result, after a few months, I was asked to become a Moderator for the forum, to help keep the place ticking over and watch out for any bogus or abusive posts, or simply to steer new members to the appropriate section or give instruction on operating the forum.

The forum grew, and as it was growing, so was a new life in the tummy of the forum’s founder! As a result of her pregnancy, the founder asked if I would take over the administration of the place whilst she took some time of to have, and care for, her baby. Now we are a few months further down the line, having expanded hugely in that time, and with nearly 75,000 posts and 1,676 members! Not all those members post all the time, of course. Some never post, some post for a short while then disappear, yet others have posted thousands of times and then departed. There are new people coming in all the time though, and this keeps the place vibrant and fresh. It’s wonderful to see the transformation in people from frightened, panicking, newly-diagnosed into confident and supportive experts on their own diabetes. Plus, I have learned of the anguish and frustrations presented to parents of diabetic children, who cope with remarkable stoicism and give such tremendous support to one another.

The bond that unites all the members, whatever type their diabetes, or length since diagnosis, or if they are parents, carers, teenagers, pensioners, athletes, makes it a very good place to spend time. There are the realities of diabetes, the terrible complications that can be visited on people, but there is also the great humour of people in the face of adversity, which helps to keep us all going. Next week, a large group of us will be meeting up in London. I am sure that will carry the bond of friendship to new levels, and I’m very much looking forward to it! Pictures, no doubt, will follow!

Forums empower diabetics!

This article has been removed at the request of the author.

An Ode to Anne-Marie

I’ve been an administrator on a diabetes support forum for a while now – it’s where I first started posting my poems and they do seem to be well received. At the end of June I happened to mention on the forum that I was going to start recording my training diary on the blog, and was asked by several members if I would be running for charity as they would be happy to sponsor me. Last year I ran on behalf of Diabetes UK, but haven’t been too impressed with them in recent months, so wanted to raise money for an alternative charity. I finally settled on JDRF – the Juvenile Diabetes Research Foundation. This is an organisation dedicated to finding the causes, new treatments, and hopefully one day, the cure for Type 1 diabetes. Now, I developed diabetes well into adulthood, but on the forum I have heard many stories from parents, teenagers and young adults about how diabetes has come into their lives and how they are struggling to ensure a happy healthy future in spite of it.

Type 1 diabetes is a very distressing diagnosis for parents, who then have to subject their often uncomprehending young child to regular injections and finger prick tests daily, and without respite. The condition is also increasing by 4% a year, and it can, it seems, strike any family. Research into finding a cure or methods of prevention, therefore are of extreme importance and JDRF are at the forefront of this research.

I have been extremely moved by the support I have received from the forum members, who have never met me, yet have still given generously to my fundraising appeal! I am at the current moment 80% of the way to my target in less than two weeks since launching the appeal. I decided to try and encourage more donations by setting a competition. People have to guess what my finishing blood glucose level will be at the end of the race and, as a tie-breaker, estimate my finishing time. The prizes are a copy of The Discovery of Insulin, by Michael Bliss, and two runners-up prizes of a personalised poem written by me. One sponsor, Anne-Marie, decided that she wanted the poem without competing for it and sponsored me an extra £10 to provide it! Here is the result, which she is very happy with (thank goodness, one always doubts one’s creative works!). A few words of explanation: she is a Type 1 who follows a low carbohydrate diet, is an insomniac, and is also the forum’s most prolific poster! I do have to keep her and her friend Katie in line – but it is all light-hearted fun which I think other forum members appreciate!

She’s a carbophobiac, and here’s the reason why,
Just the mention of a twiglet will send her levels high!
Potatoes, bread and pasta are to her an evil vice,
No matter what the GI is for white basmati rice!

She’s also an insomniac and cannot sleep at night,
It’s often three or four a.m. when she turns out the light!
But Katie keeps her company, for the two of them are twins –
It’s hard to tell where one girl ends and the other one begins!

She’s perfectly prolific, posting quips the whole day long,
And finds the ideal video if you’re searching for a song…
She’s filled with prawns and omelettes, and eggs of every kind –
A girl whose lips eat fewer chips, I doubt you’ll ever find!

If the forum was without her it would be a duller place,
For though she thinks that Northerner is always on her case,
He thinks she’s kind and generous, and full of good support,
She’ll be right there for anyone without a second thought!

So, here’s my ode to Anne-Marie, who used to live down South,
Admirer of the rugby men, with the occasional ‘potty’ mouth!
And should they ever find the cure, let’s hope it’s not her fate
That it consists of one huge pill that’s high in carbohydrate!