Thursday, 31 December 2009

New Year!


2009 has been a year where I’ve been rather dominated by diabetes. I’ve been heavily involved in a diabetes support forum, writing diabetes-related poetry and articles here and elsewhere, and of course, dealing with the condition itself day-by-day. I wouldn’t say it has been controlling me, but I think that, in the coming year I need to find a better balance and look for more non-diabetes related activities and interests. I think it has been fairly inevitable that my first full year with the condition has meant a large proportion of my time has been dedicated to understanding it and learning all I can about its past, present and future, but next year I am back in charge!

Bring on the New Year, I can’t wait!
So give a resounding cheer!
I won’t hold back or hesitate,
And I won’t drink too much beer!

Last year my pancreas decided to end
It’s role in my glucose control…
Well, my wiggly organ friend,
Here’s one in your millimoles!

You thought that by this time that I
Would weep and mourn your loss,
But you were wrong and that is why
In THIS body I’m the boss!

I’ll tell you now that only when
You work like days of yore,
Why, then we’ll be good friends again –
In fact I’ll love you more!

Next year will be the year for ME,
I’ll have the upper hand!
Not in the thrall of devil ‘D’
But alive and feeling grand!

Wednesday, 30 December 2009

Diabetes Support Review of the Year 2009, part 3


Diabetes is a serious condition, but we’re not always gloomy and doom-laden! One of the most popular threads over the past year has been Diabetes Support’s own virtual pub, the Glucophage and Glargine. Here all are welcome to order whatever carb-heavy meal they desire, and drink their fill on any tipple that takes their fancy with no effect on their blood glucose levels. Currently standing at over 35,000 views and 4,500 posts it supercedes the earlier ‘one-liner’ threads that proved so popular. Resident DJ Brightontez provides us with an eclectic mix of tunes from dusk till dawn from his (actual) jukebox! The pub will be refurbished when it reaches 10,000 posts…

A fine selection of jokes, from members Einstein and Diabetic Dave in particular, have swelled the Jokes section, formed when the number of jokes began to take over the ‘Off the Subject’ section. Some risqué, some silly, and the occasional one which didn’t quite hit the mark, but humour can often be a very personal thing.

Katie’s ‘Post your pictures’ thread generated a lot of interest – so many people curious to find out what the faces behind the nicknames are really like! Currently running at nearly 4,000 views maybe it’s time to revive it! The London and Southampton forum meets also included pictures which many people have seen and commented on. However, the forum Gallery section hasn’t been as popular as might be expected – I think this may be due to some of the restrictions on adding pictures that many have found, making it difficult to use, and something that perhaps needs to be revised in 2010.


jedward


Diabotics Polly Urea and Gluco Jon pose as Jedward for World Diabetes Day

X-factor has been hotly-debated, with many people appalled at Simon’s decision to keep Jedward in, and disappointment from many that Olly Murs did not win (mostly from the lady members). A poor quality bunch all around this year, not up to the standards of Alexandra Burke and Leona (who’s now so famous she only needs one name!).

Aymes led a concerted campaign to elect her little brother Barnaby as the ‘Face of Kinder’. He didn’t win, but did make it into the top 100 out of 4,500 contestants!

Diabotics, creatures formed from the detritus of diabetes care – test strips, tubs, pill bottles, needle cases, insulin cartridges etc. have proved a hit and another welcome distraction from the downsides of diabetes. First introduced to us by Becca, they’ve provided many an hour of misspent time for some of us making them, and produced some very positive comments for our efforts. It’s particularly nice when children have taken part and created their own – see Kei’s daughter F’s creation Diane Botic below!

Diane Botic



We’ve had a few weddings (not yet between members!), new babies (notably Kati Admin’s little boy Zachary!), and some pregnancies, with lots of advice and support flying around on these subjects too. Some members have stayed and posted for a while, and then moved on. Some people pop in now and then to see what’s going on, or to ask something new that’s cropped up in their lives. We have posters who are very prolific, notably Steff – currently topping the list at around 8,500. I’m guessing she would have made 10,000 in the year if she’d joined in January! Some people have joined and never posted, or even come back after the first day, to our knowledge. Some join and read regularly – there’s a real mix and hopefully however active or long or short a visit, we hope it is helpful. We’ve had a few researchers and students pop in and the occasional professional, but they don’t seem to stay too long. And the odd spammer!

For some reason, there has also been a lot of discussion about the wonderful Kate Bush, lovely women with short haircuts, and a smattering of diabetes-related poetry…!
I’ve learned an awful lot in the past year and I believe I have made many new friends. Hopefully 2010 will continue the success of 2009!

Tuesday, 29 December 2009

Diabetes Support Review of the Year 2009, part 2


One topic that attracted a lot of interest was whether people viewed diabetes as a disability. Opinions varied, some preferring the term ‘condition’ they do not feel they are disabled, but can do pretty much everything that a non-diabetic can do. There is also a feeling that a ‘good’ diabetic who follows a healthy lifestyle and diet is actually fitter and healthier than the general, non-diabetic population as a whole! There is, however, the legal implication of being included in the Disability Act, whereby employers must make reasonable provision for diabetics, allowing them to test, take breaks if necessary to treat hypos, and not discriminate against them.

From another perspective, the issue was raised in a number of threads of the special considerations for children with diabetes, such as should they be allowed to the front of queues at theme parks and what schools should provide for their care. The increased flexibility of treatment regimes and the attempt to gain tighter blood glucose control mean that there may be more testing, injections or the complexity of pumps for schools to monitor. We have some very forthright and active parents on the forum who fight hard to ensure that children get the care and support they need, whilst living as close as possible a normal childhood. These parents have been of great support over the year to those with newly diagnosed children, who are often frightened, confused and overwhelmed by the diagnosis and all it implies.

Another popular theme was my participation in the Great South Run to raise money for JDRF – popular perhaps because of my persistence in attempting to gain sponsorship! The good news is that we raised over £750 for the charity thanks in no small part to the generosity of our members. The other good news is that I finished with all limbs intact!

Several threads have revealed the great diversity of our membership and the circumstances surrounding their diagnosis. In ‘How long diabetic?’ we discovered that we have many members with over 30, 40 and even 50 years of diabetes, with everyone from a few months to a few years in between. This huge breadth of experience means that our members have encountered many changes and different treatment regimes and there is always someone who can offer advice and support. Those recently diagnosed are a great help too, as they bring to light current care practices that some of the longer-diagnosed members may not be aware of, leading to renewed efforts to get up to date and on track.

Other features of the year have been discussions of glucose meters, statins, neuropathy, medical ID, changing needles and lancets, depression, swine flu, appropriate testing for Type 2s, incompetent doctors and pharmacies, metformin, retinopathy exams, podiatrist visits – topics which have often cropped up many times as new people join with new questions. Our adage remains that there are no silly or stupid questions, even the one I asked about nostrils! And of course, something that only people with diabetes can fully understand, the announcements of improvements in HbA1c scores!

Tomorrow, the lighter side of Diabetes Support in 2009!

Monday, 28 December 2009

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!

Friday, 25 December 2009

Bah, humbug!




When the horrid hypo headache hits you hard,
And you want to keep the shakes and sweats at bay,
Then please don’t turn to meat, for you must have something sweet,
And what better sweet to eat on Christmas Day?

Its minty taste’s divine and it’ll set you up just fine,
And make that hypo headache go away,
So don’t you mutter ‘Bah humbug!’, but a hearty ‘Hurrah humbug!’
And let the humble humbug save the day!

A very Merry Christmas to all my readers!

Tuesday, 22 December 2009

Make my Christmas!


When I awake on Christmas Day,
I’m hoping that you’ve gone away,
For though I’ve tried to learn to love you,
There’s many a thing I’d place above you!

Diabetes, I know you care,
You never leave me, you’re always there,
But I would cope if you should go,
Just thought that I should let you know…

We’re very close, that much is true -
At every meal, it’s me and you,
And each night – oh how close you keep!
And never leave me while I sleep…

You could leave me a Christmas gift,
Or just leave, and see my spirits lift!
So how about it, if you could,
Just pack your things and go for good!

I wouldn’t miss you, can’t you see?
It’s over between you and me!
You’re not the friend you think you are,
So sling your hook, and make it far!

Wednesday, 9 December 2009

Dear Santa...


Christmas is notoriously a time for over-indulgence, eating and drinking with abandon and not really worrying too much about the consequences of this once-a-year celebration, as it can all be remedied by the New Year Resolutions that are just around the corner. Last year, however, was my first with diabetes, and for the first time I had to consider carefully what I was going to eat and drink – how much I could safely handle without making myself REALLY ill, and not just a bad stomach ache and sore head the following day.

As I’m on insulin I can, in theory, just calculate the carbohydrate content of my food and drink and dose myself accordingly. However, I’d also have to consider timing of injections, so I wasn’t peaking or dropping low, and I’d also have to consider whether I really wanted to inject the amount of insulin I might need for a day of extreme over-indulgence! It’s at times like this that you really start to realise what a great asset your pancreas was – and no doubt (as in my case), completely unappreciated! So here’s my plea to Santa, for a new, fully working pancreas. Even if it only works for a day, like many Christmas gifts, it would allow me one day free of the shackles of diabetes – and that would certainly be a day to celebrate!



Dear Santa, I’m hoping that you read this list,
For I’m asking for something that lately I’ve missed,
It’s a thing called a pancreas, now I know what it’s for,
It’s something that I’d never thought of before!

I’ve got one that’s broken, and whoever would know
It was my dearest possession, and I do miss it so!
If you brought me a new one, with all working parts,
Then I could eat jellies and trifles and tarts!

I’d have roast potatoes, and parsnips as well,
But I’d lay off the sprouts (because of the smell!)
And after my turkey and cranberry sauce,
Why, then there’s the pudding – with custard of course!

And all through the day I could fill up on treats,
Like mince pies and chocolate and fruit cake and sweets!
With a lovely new pancreas I could drink lots of beer,
Till I couldn’t walk straight, but with no hypo fear!

I know that a pancreas might be hard to find,
And if you can’t get one, I won’t really mind,
Instead, leave some insulin, for my stocks might run low –
A gallon of fast-acting, and a pint of the slow!

Tuesday, 8 December 2009

Injection Disaffection


It’s a common misconception, I think, that being an insulin-dependent diabetic is difficult chiefly because you have to inject yourself several times a day. This is something that most people can relate to, the thought of all those injections and how they must hurt but you have to do them even if you are afraid of needles, and ‘oh, I could never do that!’ I’m sure you get the picture. There are few of us alive today in modern society, of what ever age, who haven’t had to have an injection of some form or another. It may be that the injection hurt, or simply that the anticipation of the pain might even be worse than the actual needle going in. Often, these injections involve rather large needles, and are made into the veins or muscle tissue, which again can make them more painful.

However, insulin injections are quite different. The needles are tiny, usually 6 mm, and the injection is subcutaneous – into fatty tissue rather than a muscle or vein. As you are not injecting deeply, there is rarely contact with nerve endings or blood vessels, just maybe the odd small capillary that might engender a tiny speck of blood. Fingerprick tests to check blood glucose levels are usually far more painful as there are more nerve endings in the fingertips and you are actually trying to produce blood.

So, what is difficult about insulin injections, if it isn’t the pain? The answer is trying to work out every single time just how much you need to inject in order to hit the ‘Goldilocks’ dose – neither too much, nor too little insulin. A healthy pancreas will do all of this without you knowing, and in such finely-tuned amounts that it is impossible to mimic manually by injecting or even with an insulin pump. The insulin starts off at the wrong place too – a healthy pancreas sends most of the insulin it produces directly to the liver for redistribution, an injection will slowly be absorbed through the capillaries directly into the bloodstream. To calculate the dose you need to know precisely how much carbohydrate you are going to eat, and what your resistance to insulin is like at the time of day that you inject. That resistance might be reduced by some previous activity you have undertaken – but by how much? You might also need to consider the speed of digestion of the food you are about to eat, so that you can match the peak of digestion (and consequently blood glucose levels) to the peak of your insulin. There are many, many more factors, but you get my drift.

If you have a healthy pancreas, you cannot comprehend this in the way that a diabetic person does, even if you are very familiar with the concepts and maybe know people close to you with the disease. It is true that a parent will fear for their child if they have diabetes, but that is different to how a comprehending adult will feel. With each injection I feel an anxiety about getting the dose as near to perfect as possible so that my blood glucose levels will fluctuate no more than a non-diabetic person’s would, and thus spare me from the potential awfulness of diabetic complications of the heart, eyes, kidneys, nervous system and limbs. No matter how often I do it, and later find I got it almost right, each injection brings with it this mental distress. This may fade with familiarity, I’m not sure, but for the moment that seems unlikely or at least a long way in the future.



I think that on reflection, my injection disaffection
Is not from when the needle tip goes in,
Or some fearful predilection, or the worry of infection,
For I rarely feel the pinprick break the skin.

No, the pain of the injection is the insulin selection,
And the hundred different things you need to know –
Overlooking one connection in your quest for dose perfection
Could later find you high or find you low.

For each dosage calculation you need flawless information,
If you don’t inject, you can’t really understand,
For you have no real sensation of the fear of complications,
That pervade your life in Diabetes Land!

Monday, 7 December 2009

Diabotic - Accu Chick!


The latest addition to the diabotics range of creatures constructed from the assorted debris and detritus of diabolical diabetes!

Materials:

1 x Accu Chek test strips box
1 x outer needle cover
2 x Novorapid insulin cartridges
4 x inner needle covers
20 x needle tip covers
32 x Accu chek test strips

Sunday, 6 December 2009

The Fight To Survive – Caroline Cox


If you have Type 1 diabetes, and in particular if you are a child with it or the parent of such a child, then this book should be essential reading. It charts the life, and near-death and subsequent recovery of a young girl diagnosed at the age of 11, at a time when insulin therapy was unknown and the only available treatment was a near starvation diet of less than 800 calories a day.

The diet itself was intolerable for most, who could not live with the daily torture of eating far less than their growing bodies required, but in this respect Elizabeth Evans Hughes showed remarkable dedication and willpower, especially for one so young. Caroline Cox builds a vivid picture of Elizabeth’s struggle and her refusal to let the disease and its privations restrict her from living as normal and full a life as possible, and her strength would permit. She sought to remain cheerful and optimistic in her many correspondences with her mother, Antoinette Hughes, and relieve any pressure she could on her family, in particular her father who held some of the highest positions in US political and judicial life.

Intertwined with the story of Elizabeth’s life is the story of the discovery by Banting, Best, Collip and Macleod of the substance that would save her life and completely alter the treatment of diabetes – insulin. This book provides an excellent companion volume to the two other great accounts of the revolutions in diabetes care that have occurred since the early 1920’s: The Discovery of Insulin by Michael Bliss, and Diabetes- The Biography, by Robert Tattersall. Cox’s biography brings a very human and personal perspective to the story of the miracle of insulin and brings home forcefully the dreadful realities before its discovery, and the hope for the future after it was successfully purified and administered.

I have Type 1 diabetes and do not have to endure what Elizabeth and her contemporaries had to endure. With modern treatment I can be confident that the insulin I use is pure and standardised, with a reasonably good prediction of what I need to inject in order to eat a certain meal. Each year new discoveries are being made to refine and improve the lot of the person with diabetes, but none – short of a cure - can surely match the transformation brought by insulin to be able to consume a healthy and varied diet rather than wasting gradually away to nothing.

You will be captivated by Elizabeth’s spirit and courage and left in no doubt that, awful as a diagnosis of diabetes is even now, there was a time when it was almost unbearable. I cannot recommend this book highly enough, I read it from cover to cover in one sitting.

Thursday, 3 December 2009

I'm low, I'm low...


Hypoglycaemia is one of the perils of diabetes, most commonly in those on insulin and trying to keep tight control. Erm, that would be me then! A hypo occurs when the level of glucose in the blood drops too low, usually below 3.5 mmol/l. As glucose is the only form of energy the brain can use, it quite rightly becomes rather distressed when it can’t get enough to function properly and sends out all sorts of signals to let the unfortunate diabetic know that something is wrong.

The odd thing is that, even though I know precisely what is happening, I feel somewhat reluctant to remedy the situation by eating some fast-acting sugar, like jelly babies or a sugary drink. I feel like it’s something really annoying and fight against the feeling, as though I can somehow overcome it through willpower alone, that it is something I must defeat mentally, even though it is a physical condition that needs handling in a physical way. As the person having the hypo I can’t rally say how I might appear to others, but there is much evidence that people become irrational, or appear drunk, sometimes aggressive, and often completely illogical. Not surprising, really, as it is the hypoing brain that is compromised and therefore not best placed to behave in a rational manner.

I know what I need to do to make the feeling go away – eat some sugar! But knowing this does not seem to be enough to make me act immediately, and I’ll sometimes spend quite some time deciding whether I should eat a green jelly baby, which I don’t really like, or a red one, which would be a nice treat and at least I would get some pleasure as a reward for suffering the hypo. But if I always leave the green ones, then there’ll only be green ones left at some indeterminate time in the future when I’m having another hypo and would really like a red one! And I’m arguing out this stupid dilemma whilst all the time I’m trembling and sweating and my heart is racing, and there are hundreds of little black blobs swimming in and out and across my vision.

Just eat the stupid jelly babies!!!!!
I’m low, I’m low and I know that it’s so,
And I wish and I wish that this feeling would go,
For I’m sweaty and shaky from my head to my toes,
From the back of my head to the tip of my nose!

So why don’t I act? Oh, why hesitate?
It’s so inconvenient, I’d rather just wait,
I’ll leave it a minute, it won’t be too late,
Though it seems to be worse now, I’m in quite a state!

I’ve got jelly babies by the side of my chair,
A green one? A red one? I really don’t care,
This darned diabetes is really unfair,
I'm living the dream - or a waking nightmare!

Oh, I can’t write my letters with eyesight like this,
All swimming and jumbled and all gone amiss,
So at last I feel tempted by the sugary kiss
Of a sweet jelly baby, and some sugar rush bliss!

Tuesday, 1 December 2009

Diabetes - the Biography - Robert Tattersall


I thought I would include a review of a book I read recently about the history of diabetes. There appears to be very little written on the subject, despite its importance and the development over the years, particularly the last century.

This is an absorbing and comprehensive account of the history of diabetes encompassing earliest theories, the discovery of insulin and changes in treatment regimes including the very latest advances. It provides a very useful complement to Michael Bliss’ ‘The Discovery of Insulin’, expanding on the progression of treatment since the earliest days of insulin therapy to include chapters on diabetic complications, methods of testing and control, application of drug therapies and the emergence of the patient as primary carer in the management of their diabetes – thus moving the emphasis from physician-led instruction to self-monitoring and flexibility by the individual.
Dr Tattersall builds an easily digested ( and non-spiking!) timeline of the changes in diabetes and its care, beginning with its first recorded descriptions 3,500 years ago through the advances of the nineteenth and twentieth centuries, culminating in current methodologies and advances of the twenty first century. It is an encouraging story of how diabetes has changed from being an almost assured death sentence accompanied by severe and distressing complications to a manageable condition with increasingly sophisticated treatment options, thus promising a much brighter future for those who are being diagnosed in ever-increasing numbers today. A very welcome addition to my library!