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Jun 11, 2009 marke 681 posts	Topic: DAFNE Online Mobile / DAFNE On Line Mobile thanks for the postive comments and for feeding back your experience. We only have access to a limited number of devices to test with so we are keen to hear anyones experiences with other devices. We then know that the site does work with an number of devices. Obviously if anyone finds a device it doesn't work with, we will try to resolve the issue

Jun 11, 2009 marke 681 posts	Topic: Questions for HCPs / Protein Supplements Hmm, interesting question. I would be interested what the body does with 'excess' protein. If you take protein supplements which contain more than you need does it get explelled in 'ahem' bodily waste ? I know that one of your 'tests' that is done along with Hba1c is protein in the urine as its an indicator of potential complications. If you had protein because of supplements could this cause false readings I wonder ? With regard to Gym's my experience is they often are not aware of Diabetes at all. One tried to tell me I couldn't do this that and the other because of my diabetes. I'm ashamed to say, I didn't tell the last one I was diabetic to avoid complications. I now just enjoy natures bounty on my bicycle and save my Gym fees, well we are in a recession ;^)

Jun 11, 2009 Simon 578 posts	Topic: Questions for HCPs / Protein Supplements One question I've always had, which isn't strictly DAFNE Related but more focused on Diabetes in general is - what is the HCP/Dietician point of view on Sports Supplements such as Protein & Creatine? Whilst at university I was quite heavily into weightlifting + used things like protein shakes & bars to up my daily protein intake as that was touted as the major nutrient related to muscle growth + repair. Then I found out I had Type 1 and the weightlifting stopped for a while. I've started getting back into it now - but have refrained from the use of protein supplements as someone mentioned 'they will put increased strain on my kidneys' - it this true, and if so what are the alternatives for people with Type 1. Also, whilst on the subject of gyms, I recently joined a new gym and during the induction was told that I wasn't allowed to use the Power Plate machine as I had Diabetes - does anyone know of the reason for this? Thanks, Simon

Jun 11, 2009 Davejg 6 posts	Topic: General Discussion / "Balance" letter about injecting in public The reason injecting in public has never bothered me is that when diagnosed as a young child ,and although none of my family or in fact anyone i knew had any idea about diabetes , my mother went to my school and literally everyone was informed. In those days carb counting was the norm 1cp as it known as now was called a line and insulin and carb intake was a lot stricter on the diet and was time specific. the insulin then was not as good as it is now and had to be taken at specific times folllowed by carbs half an hour later,this was also catered for in my school day. The head cook used to calculate the carbs i needed for each lunchtime ,LOL the only thing i really missed out on was the deliciuos puddings. In those days I had to eat 270grams of carbs a day 27 lines or now 27 cp's.spaced out over 6 times a day I have never been embarassed about injecting in public or about my diabetes, In fact in all my life i have never seen anyone shooting up drugs but i have seen other people taking insulin in allsorts of places such as airports and restaurants. Dafne and the new insulins has opened up a new world to me in regard to if or when i eat and is not such a strict regime. Dafne has improved my life and given me much more understanding of how to manage my blood sugars . I think diabetes can be inconvenient at times but never an embaressment

Jun 10, 2009 Alzibiff 21 posts	Topic: DAFNE Online Mobile / DAFNE On Line Mobile Top! Just tried it on my HP IPAQ Messenger (PDA thingy incorporating a telephone running Windows Mobile V5 I think). Display is fine and dandy and I am sure I will use it in future especially for the carb counter but also for the other features of this site. Well done admin folk - well worth the effort.

Jun 10, 2009 Alzibiff 21 posts	Topic: General Discussion / "Balance" letter about injecting in public Thought I may as well stick my Â£0.02 worth in - my first post. I have had diabetes for just over 42 years and rarely taken my insulin in public. In general, I always disappeared into the toilets as to be honest I didn't/don't have the self confidence to appear "shooting up" in full view of others. Maybe it was my upbringing but injecting in public is a source of embarassment to me. Saying that, when I have had to, I have injected in public but tried to hide the fact rather than advertise it - finding a quiet spot at events such as international cricket matches for example. I am now on an insulin pump - for the last two weeks - and look forward to being able to simply dial in my bolus in public - no insulin pens or needles! I think that if I had met others with diabetes years ago, my embarassment about injecting in public would not have been so acute. As it is, the FIRST time I spoke to anyone with diabetes since my diagnosis in 1967 was a couple of months ago at my DAFNE course. As well as learning the DAFNE principles, the other spin off was that I could compare attitudes to a common set of problems and events with others - so that was a good thing!

Jun 8, 2009 Davejg 6 posts	Topic: General Discussion / "Balance" letter about injecting in public I have been diabetic for 37 years and have always injected in public, It was a lot more difficult years ago when using the old style syringe and stainless steel needles but it is a necessity of life,much easier now with pens etc..In all the years i have injected in public I have never been questioned or challenged about it The nurse who made the comments should be ashamed of herself

Jun 8, 2009 Lizzie 87 posts	Topic: General Discussion / Does Dafne work? Patti. I know things can be misinterpreted. I cannot see where in her last few posts JennyS said anything about occupational health, maybe it was on the page before or I missed it. In any case as far as I can see doctors still have no right to make critical comments about someone's character, saying they are aggressive. I didn't mean anything by it, I was asking a question to find out why the doctor made that judgement, and the only person I criticised was the doctor, not Jenny. This is an open forum and if people say something then they should expect it to be discussed. I don't think I said anything insulting, I just asked a question. Surely that is the right thing to do if you don't understand something? If nobody commented on things or asked anything unless they had "been there" then people would not share their experiences and forums like this would be pointless. Nobody has the same experiences, everyone is different. I didn't mean to offend anyone but I don't think you can say people "cannot comment unless they have been there".

Jun 6, 2009 marke 681 posts	Topic: General Discussion / Does Dafne work? Patti, Lizzie CAN comment as can I. If Jenny posts personnal details like she did then she should expect comments. Although quite what it has to do with DAFNE escapes me. Please don't tell people they cannot comment that is NOT the philosophy of this website. I would prefer if you could keep the subject matter DAFNE related or at least clearly Diabetes related. Discussions about OH Doctors or your opinions of HCP's should be kept for your website, which is aimed more at that kind of debate, our aim is to support DAFNE graduates and those interested in the DAFNE Course. That doesn't exclude other subject matters, but we don't really want to get into debates about the validity of HCP's. Thank you

Jun 6, 2009 Pattidevans 6 posts	Topic: General Discussion / Does Dafne work? Because Lizzie he was an Occupational Health Dr that Jenny had been sent to by her work. Her employers were paying for his "professional advice" go figure to whom it was slanted??? If you have never been there you cannot comment, I have and it is an uncomfortable place to be in unless you are a very educated and confident person. Even given that, if you are pushed into that position I can tell you that it is far from easy.

May 31, 2009 Jim Burnett 1 post	Topic: Carbohydrate Counting / Mulled wine Microwaving would 'zap' the alcohol, just like any cooking would cause the alcohol to evaporate. You'd be left with just the sugar!

May 29, 2009 Simon C 1 post	Topic: General Discussion / Meeting up after the course just completed my DAFNE course last week, what a useful week it was. I wish I had gone on one years ago. I believe it worked particulary because the group really worked together well, in fact I did the course with jay70 on this forum. I thought the two course leaders were excellent and let us go at our pace, giving us time to ask questions and have a laugh. I would recomend a similar course to anyone considering it. You get so much more than you expected not least other peolpe in a similar situation to share your experiences with. We have vowed to meet up again and hope we can. Thanks DAFNE.

May 28, 2009 Lizzie 87 posts	Topic: General Discussion / Does Dafne work? Sounds like an incompetent doctor, JennyS. But why was he talking to your work? My doctor would have no right talking to my work. His only communication would be writing a sick note if I was ill long enough to need one, and that doesn't include making comments about my character (only giving info on my symptoms and how long I am likely to be ill), so I think your doctor was very wrong to say that to your work.

May 28, 2009 JennyS 7 posts	Topic: General Discussion / Does Dafne work? Well Lizzie no-one (health professional nor anyone else) can actually make you do what you don't want to do - short of placing a real loaded pistol to your head or similar - even if they ARE convinced you need to make that change. So to make that choice, and make any change, you need to be persuaded by the arguments they put forward, in the first place don't you. Then if you are like me, you want to find out whether other bodies actually agree with that stance, or whether someone else you also respect say something entirely different. At the end of this process you either go with what you are being told or ignore it and do something else entirely. It may even goad you into changing your doctor. But we can all do that thing at least. It is after all Free Choice. I chose to strongly disbelieve the OH Doc that assured me that running a HbA1c even as high as the low teens would never cause me any present or later danger. But he convinced my employers that it was true and I was worrying about high 9's absolutely unduly. I have wished diabetes upon him many many times since that appointment. I asked him how he could even say that, bearing in mind what the NICE Guidelines said at that time. He pooh poohed NICE and their Guidelines. I even told him to his face at the time if he was my GP telling me that, I'd never rest for a single moment thereafter until I'd got him at least sacked if not completely struck off. So my employer gets told I'm agressive. Well that much WAS certainly true, anyway! And I don't do what he told me to do and never ever will, despite knowing that his report would infer strongly to my employer that I was just using my diabetes as a convenient excuse to more or less skive off work.

May 28, 2009 JennyS 7 posts	Topic: General Discussion / Introductions A number of us from another Forum I belong to took part a couple of months ago in some quite in depth research about why forums for health seem to help people so much. We haven't had the results of that research yet (part-funded by both the dear ole NHS and DUK) but there was certainly no bias for or against Forums that any of us detected during the questioning. However I believe it engenders a sense of community above all else - which is what the courses (whatever they are called LOL) also do rather well. Incidentally I don't think you'll find BERTIE if you just search for that, you would need to go to the Website for Bournemouth Diabetes and Endocrinolgy Centre and follow the links from there. (Link is on on the right hand side of the screen if I remember correctly) I was never scared of adjusting my doses - it was just terminally frustrating when I kept proving to myself (by my meter) that I really hadn't got much of a clue. By the time I had got a clue - I seriously wondered how I'd ever managed to keep alive - let alone virtually complication-free - between 1972 and 2008!!! (I have a tiny pin-prick of background retinopathy well away from the centre on one eye that was first noticed by my optician at least 15 years ago prior to retinal photgraphy, at the time my hospital consultant said 'Well he's got better eyesight than me then, cos I can't see it at all !' - the Consultant was quite a bit younger than the Optician AND had the benefit of drops in my eyes too - anyway it's been there just exactly the same every time I've had a photo taken in the last ???? 10 years)

May 28, 2009 JayBee 587 posts	Topic: Site Development / Question: Sharing the online diary I do think the "reply" system suggestion is good because then you can actively decide what you need to show instead of seeing all the results. If the person asking for replies concerning their levels needs to show more results, all they need to do is just post a fresh reply in the original thread they started. Commenting should remain specific to the query threads that users start considering DAFNE exercises looking over a period of days and not just one BG result. I was wondering about allowing my boyfriend to see my results online generally, but because he gets to see my booklet, it's not that big of an issue. On that note, I'm not entirely happy with showing my results to the world so some control would be good. Sometimes setting up 'user friends lists' can be good (like on a lot of blogging websites), but I'm not sure how worthwhile that is setting up for BG diary stuff. .... Would some form of password access be possible? I think that if my DAFNE nurses and what not are on here, I would like the option to allow them to see my results. It would improve communication I think so that would be great.

May 28, 2009 JayBee 587 posts	Topic: General Discussion / Introductions Thanks for the welcome marke. I have been on the Lantus BI split dose for the past 7 days (when it was suggested to me, I was fairly confident I would be alright so I didn't hesitate to try it! I'm currently doing 12 at night and 4 at breakfast) and it's been a bit strange but, as you suggest, I have been speaking to the lovely nurses who ran the course I went on and so I'll be adjusting. I'm determined to get it right! Yes, it certainly was a good thing that we all had that similarity through diabetes, though it was most likely other interests that made it difficult. I did enjoy the company of everyone on my course, though I did feel a bit of an "outsider" at times (not really anyone's fault though). On that note, I was thinking this morning if it was a good thing that friendships form from diabetes alone... I don't think it is, but at least with those you know you can give each other advice. I hope to maybe make some new friends here with similar interests.... shall have to see! Haha, I did that too JennyS. ^_^; Luckily I spotted this thread while having a look around after my first post! How good to hear you feel so young! I'm sure you're happier for it! I'm glad that I'm not alone with the Lanus split. I do think my insulin runs out around 2pm when I only did my evening dose.... considering I've not been on the split for too long, I'm still waiting to see how it goes. I hope I have better luck than you did JennyS. We'll see. I have not heard of BERTIE. I will have to research that because it sounds worth at least knowing about. I've been fairly okay with my CP counting so far so I might not look into using it myself. Shall see (again!). It's so amazing hearing all these experiences that I just have no clue of myself. Thank you all for sharing them. Since I don't get to speak to other diabetics in my day to day life, having DAFNE set this site up has been very nice for me (which I get the impression others very much feel the same way).

May 28, 2009 Novvo 2 posts	Topic: Site Development / Question: Sharing the online diary An exelent idea.I am awaiting an appointment to start on a pump so it could prove very useful for my HCP to view my results electronically

May 28, 2009 Lizzie 87 posts	Topic: General Discussion / Does Dafne work? I haven't done the online course. But my point is I wouldn't do it instead of DAFNE. It is just my opinion as I hope I made clear. But I would not have the confidence to make big changes on my own. And if someone 'uses DAFNE willy nilly' then the next day they will have to show and explain their BGs and the others on the course as well as the nurses can help them improve. With the online course I don't know if you would be able to share your blood sugars with anyone. I don't think anything is better than nothing. I think it depends on the individual. Some people like me need a lot of support and help. I would use the online course as a refresher after a face to face course but would not feel happy using it instead. Like I said, just my opinion though.

May 28, 2009 JennyS 7 posts	Topic: General Discussion / Does Dafne work? Have you done the online course then? Personally when my BS was swinging from the 30's down to 1.8 and blow on a daily basis, I'd have been more than glad of anything that might help me! Of course a face to face round the table course is always going to be better, but when you can't get anything where you happen to live and on;ine course has to be better than nothing at all! Anyway, if a person doesn't read and take in the course content, before using whatever they do happen to notice willy nilly - they'll come unstuck anyway, no matter how it is delivered. That is why it is written in such a way that it takes quite a long time to go through it all and literally does lead you gradually on to the next bit. (I skipped stuff myself at times as I thought it was a bit slow, esp on the parts I already thought I knew - then found I had to go back to a previous Module and do a recap in order to even grasp, let alone participate in the next bit and you have to answer the questions correctly before it lets you continue LOL) They know who you are (from registering) and how much of the course you've grasped or not from the answers you give - I dropped out in the end but only cos I got onto a real course!

May 28, 2009 JennyS 7 posts	Topic: General Discussion / DAFNE in peril at the Wirral I'd almost be willing to put money on it (not that I have any inside info or money - I live in the West Midlands!) that WHISTLE is a BERTIE-type course. The word similar should have been used rather than same but then the lady at the PALS office won't be a corporate lawyer I don't suppose, LOL Interesting that they should run the two side by side - obviously the usual funding issues. In any event if you or anyone is still going to that hospital you will still see the same docs and nurses as previously, so they will still all be aware of exactly the training you have had and the principles thereof (and the principles are similar for both) Any formal training given to diabetics must follow all the guidelines specified by the NHS - they haven't changed. If diabetes treatment moves forward as it does all the while and course materials/content are changed significantly - then it all has to be agreed by NHS centrally before DAFNE, BERTIE or anyone else can deliver it to us in the first place. However one thing that occurs to me as a Patient is, what ongoing support do DAFNE participants actually receive directly from DAFNE - surely the ongoing support and info is still down to the educators - the DSNs, doctors and dietitians, seeing the patients day to day? When you move out of area you get whatever you get in the new area and if they don't support it, you just don't get it - whatever it is - HRT after a total hysterectomy is a very personal example a) I used to get implants b) including testosterone - I moved from Worcestershire to Coventry and was told they didn't believe testosterone has any part to play and anyway they didn't do implants, I would have to have patches. Hang on says I - I'm a naturist, can't wear HRT patches in sunshine, they don't work! After initial disbelief on the part of the GP (great stuff, he doesn't even know the facts about the drugs he prescribes?????) Having looked it up, which confirmed my statement he shrugged his shoulders and took a long long time finding some tablets he was willing to prescribe, which he made me stop taking in my mid-50's as he said I would most likely die early of heart trouble, being a diabetic. So it's a postcode lottery anyway, diabetes is no different to anything else you or I might have or get!

May 28, 2009 Lizzie 87 posts	Topic: General Discussion / Does Dafne work? I think that DAFNE is more valuable than an online course. With an online course, there is no supervision. What happens if you try and follow it and give too much or not enough insulin and have serious consequences? One lady collapsed from a severe hypo on my DAFNE course, if learning alone at home this would have been very dangerous. Many others had mild hypos through the week, and my sugars were very high for several days. Not something in my opinion that you want to be going through alone. Also, before DAFNE I would not have had the confidence to muck around with my insulin. I had had no education in this whatsoever before DAFNE in 15 years of diabetes. It was a huge hurdle to get over and without face to face support for a week I couldn't have done it. I would also agree that the face to face aspect is key. With an online course you only get one doctor's idea of what you should be doing. Doctors are valuable but in terms of living day to day, they don't really know about that and you wouldn't expect them to. So I think online courses need to include a forum for feedback on day to day issues and support from other diabetics. It is one thing saying 'you should do this' but real life doesn't work like that. It is important to get an idea of what to do if you can't manage the textbook way of doing things, or forget or something. An online course can't tell you that.

May 28, 2009 JennyS 7 posts	Topic: General Discussion / Introductions Ooops! - How rude of me, I registered and started posting without saying Hello first. I'm now 59 but 18 in my head and TBH haven't decided exactly what I want to do when I grow up yet. I've been a Type 1 since July 1072 (I meant 1972 but I think I'll leave that; think it must have been a Freudian typo) Anyway someone bought me a keyring in 1990 that says "39 forever" which I still have - so it must be true. A few years ago any control I had took a nose-dive, but then of course like everyone at that time I'd been given the insulin but not the education and was even told by a DSN at the hospital clinic at the very same moment as my Humulin I and S pens were handed over to stop counting carbs, that was terribly old fashioned and I mustn't do it with these new insulins. Well guess what happened to my control after that, guys? After that I had a hysterectomy so went through the menopause - and no-one ever told me that my hormones would affect my BS in the first place - still not a lot of point when I was hitherto using one jab a day of 80u per ml Lente insulin derived from piggy pancreases, eh? Anyway same time as that, I built up antibodies to the old animal insulins, hence why I landed up on Humulin. Anyway I lost my hypo symptoms and nearly killed myself on the M42 a couple of times and had worse control anyway on it than I had ever had with Lente. As soon as I ever heard about Glargine I was begging for Lantus and went onto it and Novorapid as soon as I could. That would be about the same time I started begging for DAFNE - no-one at the hospital clinic, or at my doctors surgery had even heard of it - so eventually I stopped banging my head on a brick wall. I then went down the tubes quite a lot - mental health-wise and BS wise - but no-one ever mentioned that stress causes BS to rise, I just thought I must have built up antibodies again, but all the docs I saw said that defo couldn't happen, so said I was talking rubbish. The inference was always this was MY fault. I was losing weight and mental capability with the constant swings to the 30's and the 2's (and below) and eventually after a couple of years culminating in my thumping a desk and shouting quite a lot, my GP decided to ask me if I'd like to see a DSN. (They had been moved out of the hospital and I couldn't find out where I could contact them) The DSN mentioned a Carb Counting course amongst other things which I instantly put my name down for, but nothing happened for months and months so eventually I literally said Sod this - and did what I swore I'd never do - I Googled for Diabetes! It took me some months to work my way through all the sites and forums and adverts for Miracle Cures - but eventually I found a forum populated by people that gave me some of the education I'd never had and I started to make sense of it all. (Patti and Terry were just two of those people - I was subsequently asked to become a founder member of their new forum and was very pleased to do so) I too had probs with Lantus - it always stung incredibly as I injected it and I seemed to have the choice of injecting at bedtime and being hypo about 5am or on rising (with a high fasting BS) then high again from about 8pm. So I split it. I tied every combination and timing of dose that was possible and nothing worked reliably although I used to get fairly good results after the intitial 3 days, for the next 15-20 days, then it would all come unravelled again. Eventually I just got bored with the totally unequal struggle and actually demanded Levemir, which I got and I have literally never looked back since. I take 11u on waking and 4u in the evening (some time between dinner and bedtime, erring towards bedtime, actual exact timing seems to make very little difference) Small wonder an insulin that releases itself in a level fashion didn't suit me, then! Meanwhile I'd got onto the (BERTIE based) Carbs training course for the following January and using the education the forum had given me, I reduced my HbA1c between the October 2007 when I went onto Levemir and the January 2008 when I went on the course - by 15%. (8.4 down to 7.3) Since then I've had a 'nervous breakdown' and also coped with the stress reasonably well, helped loads by my cyber-friends and my DSN. MY Hb has been up into the 8's again but is recently back down to 7.3 again now and whilst it's by no means perfect 'yet' it is so much better! It's a matter of discovering what your own body specifically does, and at what time of day it does it - we are all completely different and some of us like me are just downright weird - you are sposed to need as much insulin at night as during the day cos your body is really hard at work at night while you're asleep. Clearly mine thinks its perfect anyway so doesn't need to expend nearly so much energy (that's a joke LOL) as the next person's. Yours will no doubt be quite different to mine or anyone else's, so it's a matter of adjusting your basal requirements to fit you personally. And splitting Lantus could well be the very thing that works exactly right for you. I understand that DAFNE will have told you how to do this; they say (I believe) that carb-free meals are the way to go whilst doing this however - if it has no carbs the body will just use protein to convert into energy (or of course into fat if it gets too much, same as excess carbs) BERTIE teaches much the same method - but actually physically missing a meal to do the deed. It is quite simple but you obviously should never never try to adjust all of it for the whole day, in one fell swoop - one meal at a time spread out over however long you need to, I did mine one meal at a time at weekends, made any doseage adjustment on the Monday and tried it for a week at least before I missed the next meal. (Not long of your life anyway in comparison to how much longer you intend to be here!)

May 27, 2009 marke 681 posts	Topic: General Discussion / Introductions Welcome on board Jennifer, most of the people on my course had their background insulin split into 2 doses, however most of us were using Levemir. It certainly made a difference to me, but as ever we are all different. It can be a big jump of faith splitting the dose, I just thought I would let you know it has worked for me. I would discuss it with the people that ran your course and or your Diabetes Team and then maybe give it a try. My course was full of people of a similiar age, a fair bit older than you ;-) but not old :-) We all had different issues and also a lot of similiar ones. This is one of the great things about the course, the chance to spend a week with people who understand EXACTLY what you are going though. Slowly it seems the message about this site is being distributed by the different DAFNE centres and so hopefully the site will become more useful as graduates of all ages join increasing the age spread and thus ensuring there are people of a similiar age that can exchange information as well as exchanging views with the whole 'community'.

May 27, 2009 Simon 578 posts	Topic: General Discussion / DAFNE in peril at the Wirral Thanks for the update Becky. I've heard nothing on my complaint. I wonder if they could provide us with the decision criteria they used to say that DAFNE and WHISTLE (anyone heard of this?) are the same.