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Jun 25, 2009
ChrisS 12 posts

Topic: General Discussion / Introductions

Hi
I'm Chris, 43, married to Sarah with 2 daughters, Tegan and Amber (5 & 2).
I attended my DAFNE course at Medway Hospital in September 2007. I was first diagnosed as T1 in Feb 03 and I had been experimenting with Carb counting for a while when my Diabetes Nurse got me on the course. My job and hobbies mean I struggled to cope with a rigorous regime of fixed meal times etc.
Been really disappointed with the online resources for DAFNE, and only by chance looked in to see if any diaries were avaialble and found this new forum. Well done to those who have set this up.
 
Jun 27, 2009
Rhona 1 post

Topic: General Discussion / Introductions

I have just been sent an email about this website - and am totally over the moon!! How wonderful to be able to read about all these different experiences. I have only managed to get through some as there are so many postings. I have been Diabetic now for 32 years, diagnosed at the age of 5. Like so many others my Mum used to weigh my food, I used glass syringes to inject, urine testing was the norm, and I only ever got half a Mars bar when I was hypo - that was a total treat as normally it was powdered glucose mixed with water - yum!!! I attended the DAFNE course 3 years ago, and have never looked back. What a success - I cannot believe the freedom it gives. The absolute elation of being able to eat what I want because I fancy it - and not because I am hypo - the joy it gave me to go into a shop and buy a chocolae bar because I was ALLOWED to, and not because I was hypo! Like so many others, I have to watch the weight, but excerise is now so much easier, as DAFNE taught me how to deal with that too. I never realised that exercising at a BS of 17 was a bad thing - I always thought that if I was 17 I would work the BS down, but now I realise that when I exericse at that level, I feel heavy, lethargic and quite frankly can't be bothered - also, it doesn't come down - I now inject a small amount before exercising at that level so that the keys can open the doors!!! What a lovely and simple way of putting it, but hey I understand it perfectly now!

DAFNE has been a total life changing experience for me, and I thank everyone who delivered it - my Diabetes has never been so easy to control and now I know I will live till I'm over 80 providing nothing else gets me - but it certainly won't be my Diabetes!!! I totally appreciate the serious complications that Diabetes can lead to, I have been very very lucky as with 32 years under my belt have experienced no complications yet - and don't intend to!! THANKS to DAFNE - and to the excellent care my mum and dad gave me when I was 5 and relying on them to look after me!!
 
Jul 2, 2009
Anne-Marie 4 posts

Topic: General Discussion / Introductions

Hi all. I'm Anne-Marie and I have had Type 1 diabetes since 2001, when I was diagnosed half way through my primary degree (what timing!).

I have recently completed the DAFNE course in St Vincents hospital in Dublin. I have been watching DAFNE for the past few years, always interested in it - so when the programme moved to Ireland I jumped at the opportunity to change hospitals to one where DAFNE is practiced - best decision I have ever made.

As I am only a new graduate from DAFNE (June 2009), I am still trying to get all the sugar levels as I would like them. It will probably take a couple of weeks- but I am already delighted at how much more stable and also predictable my sugar levels are. I am no longer going to bed at night, or out with my friends, with the terror of an unexpected hypo. DAFNE has helped to make it all make sense and the freedom I have found in truly life changing.

I found this website last week and it is a great facility to have - so nice to talk to other DAFNE users and pick up any tips. I find non-DAFNE users don't really understand the concept yet, and having to explain how "Yes, I can eat this piece of cake - I have NOT turned my back on my diabetes care" can get me down sometimes! So, talking to others who know all about it (the ups and downs) is really helpful. Well done on putting such a great system together, guys.

AM
 
Jul 2, 2009
marke 686 posts

Topic: General Discussion / Introductions

Welcome Ann-Marie, with regard to your sugar levels not being quite as you would like them just keep the faith. Many people seem to think they are failures because they can't get everything under control immediately after the course. This is NOT the case, it takes time and you just need to keep focusing on the positives. Focus on what you have achieved so far and be patient, I'm sure there are many others on this forum that have had the same experience. For some people it takes longer than others and I have heard of people taking 12 months to finally get fully on top of their BG's. Remember we are all different !
 
Jul 2, 2009
Alzibiff 21 posts

Topic: General Discussion / Introductions

"Remember we are all different!" ...... that comment reminds me of the Monty Python "Life of Brian" film - same line shouted out to the multitude followed by a reply from everyone "Yes - we're all different" ..... and then a singular "I'm not!".

Me - yes - taking a while but little by little, confident that I will get there in the end - trouble is, there's always an explanation from the HPs as to why things were not as you expected ... "Well ... that walk will have lowered the BG by more than that...", "mmm - injection site may have been the reason for that", "Ahhhh - the pint of beer could have accounted for that ..."

Keep at it!

Alan
 
Jul 2, 2009
Anne-Marie 4 posts

Topic: General Discussion / Introductions

Thanks guys. Its great to have a forum to thrash these things out in. I'm keeping the chin up and know that, given the improvement (albeit imperfect) I have seen so far, then well controlled bgs are not too far away....
 
Jul 3, 2009
Phil Kane 4 posts

Topic: General Discussion / Introductions

Hi Anne Marie. The Second Irish registered DAFNE user who is now on this site. The one thing I find amazing is the lack of support this site gets from the Health people in the various teaching hospitals in Ireland.You would think that in order for things to grow you need to participate after you finish the last day of the course and walk out into a different way of thinking. I know everybody has a honeymoon period where for a few weeks or months every test is recorded along with each CP but once the pattern gets set, old habits set back in. Keep the faith.
Phll
 
Jul 12, 2009
John Roscoe 14 posts

Topic: General Discussion / Introductions

Hi everyone,
I have just joined DAFNE online after having been told about it at a DAFNE follow up session I did on Friday, so I thought I should introduce myself.
I was diagnosed Type 1 in April 1986 and attended the DAFNE course in October 2007. Although I managed reasonable control for the first 21 years I did suffer badly from severe hypos during the night and also with the dawn effect. Since attending DAFNE the night time hypos have stopped and although I still suffer from the dawn effect I find I am able to manage it better. I really think that DAFNE is the best tool available for the ongoing management of diabetes and things for me have been so much easier as a result. I hope that sites like this and the DAFNE user group help to increase awareness of DAFNE because I strongly believe in it and if I had any criticism it would be that I don't think it has yet had the publicity or the push it deserves (I'll get off my soap box now).
I have quite a bit of experience of managing diabetes and hope that if required I can share this with others hopefully to help them. I also look forward to learning from other folks experience.
I am 56, married with two daughters and two grandchildren.I have been retired for 4 years, I play golf regularly enjoy gardening and watch rugby union (Scotland fan). I visit Italy alot and have recently bought a small house there which after lots of issues is now being refurbished
and I am looking forward to spending more time out there.
Hope this gives a reasaonable overview.
Look forward to talking in the future and feel free to make contact.
Cheers
John
 
Jul 12, 2009
marke 686 posts

Topic: General Discussion / Introductions

welcome john, there will be a lot more about the DAFNE User Group soon. I attended the 'introductory/training' meeting this friday and saturday and the group is now up and running. However obviously we are at a very early stage and it will take time to acheive our objectives. I will be posting more about this in the user group forum once I receive some write-ups from the meeting. I also recently posted a report on the DAFNE collarobative in that forum that has a paragraph on the dawn effect, sadly its not a solution just more of a realisation of its effect. hopefully more research in the area will produce a means of 'treating' it effectively.
Be careful what you volunteer for :-) , one of our terms of reference in the user group is to allow us to co-opt others to help in certain areas. Although obviously at this stage we have no idea what for. In the meantime I'm sure you you can help others by being active in the forums posting replies to questions.
 
Jul 13, 2009
Jennifer 11 posts

Topic: General Discussion / Introductions

Hi,

My name is Jenni, age 30, living with my partner and son in Aberdeen and getting married next year! (woohoo!)

I was diagnosed with Type 1 Diabetes in August 2006 and attended the DAFNE course in March 2007. I found it great, it helped me come to terms with my diagnosis as I didn't really know much about how to manage my blood glucose levels. My BG levels were perfect that week but unfortunately not been so great since! I did meet some fab people who shared their experiences as I also don't know many people with diabetes my age.

Generally my BG levels are ok but I am having problems when my BG level has shot up by morning making my HbA1c quite high, seeking advice! I did go through a period of being quite lazy with testing etc...but after having my knuckles rapped at clinic I am getting better!
 
Jul 14, 2009
NiVZ 82 posts

Topic: General Discussion / Introductions

Hello,

Finally getting round to introducing myself. I'm Paul, age 31, and live in Aberdeenshire with my wife and 2 year old daughter.

I was diagnosed with Type 1 Diabetes a few weeks before Christmas in 1996 and attended the very first DAFNE course in Aberdeen and it has made the biggest change to the way I manage my diabetes. My BG was all over the place before DAFNE, but on the week of the course they were all spot on. Since the course my BG's weren't so good and my HbA1C went a bit high, but it's now on the way down again.

Really like this site, and all the features it offers and am looking forward to getting to know you all.
 
Jul 14, 2009
Claire Hough 12 posts

Topic: General Discussion / Introductions

Hi All, I'm sorry I am only just getting around to introducing myself even though I have already posted a couple of times!

My name is Claire, I'm 29, I live in Cheshire and I was diagnosed Type 1 in 1995, a few weeks before my 15th Birthday. I was given lots of help and support at the time by the hospital and the lovely DSN there, but I don't think my head was in the right place to take it all in at the time. I got by for the first 8 years or so by doing my insulin twice a day (often not at the right time, but a few hours later when I got around to it) and burying my head in the sand. I had a few hypos where I ended up in hospital and one case of DKA whilst on holiday in Spain, but knowing what I do know I think I was lucky to have got away with such few consequences of not really managing my Diabetes. When I did show up for my hospital appointments my Hba1c was usually between 9-11 but I didn't really understand what this meant to be honest! I was totally in denial and just wanted to live a 'normal' life.

Aged 23 I went for an eye check up and for the first time they found little spots on the back of my eye and I finally had the wake up call I needed. I got myself to the hospital and talked to the nurses and doctor (getting a little emotional at times) and asked them for help. The doctor put me on the waiting list for a DAFNE course and the nurses changed me onto Novorapid and Levemir, 4 injections a day and 8mm needles, rather than my mixtard pens and 12mm needles (ow - that shows how out of date I was - I am now on 5mm!!). As a result I lost over a stone in weight and my sugar levels improved, but I still wasn't doing my injections on time or many blood tests. It was only the DAFNE course that really got me doing it all properly and that was because it was the first time since I was 14 that everything was explained to me and I was in the right frame of mind to listen. It obviously took me all those years to come to terms with the fact I am diabetic!

After the course my HbA1c came down to 7.5, the best it has ever been. I now test my sugar levels before every meal, have the confidence and knowledge to correct my sugar levels and manage sick days. I now inject (subtley) in public, always carry fresh orange with me in case of hypo (I never used to carry anything with me - how awful!) and use a new needle for each injection (again something I wasn't doing before!!). The course has empowered me and I now take a much greater interest in my results and HbA1c and in Diabetes as a whole. I slipped back into a few bad habits recently and my HbA1c went back up to 8, purely due to laziness on my own part, but now I am more motivated than ever and am on track for my first ever HbA1c below 7 at my next check up, fingers crossed!

I love this site, it is fantastic, especially because I can access it from my phone and no longer have to carry around diaries and Carb books. It is really helping me to manage my diabetes so thanks very much to the guys that set it up.
 
Jul 19, 2009
Sheila_Kay 11 posts

Topic: General Discussion / Introductions

Hello,

I'm Sheila, I live on my own and have two grown up sons who have now left home and I love Dafne.
I have been a Type 1 diabetic since 1982 after the birth of my second son, and like some of you other diabetics I have seen a few changes, but at last with Dafne this insulin/carb ratio makes sense.

I have always tried to follow a sensible diet and attitude towards diabetes, but have not always felt supported by my diabetic consultant. I always felt as is I came away with a pat on the head and a tick in the book. In fact the only real advice I recieved when going through a very stressful divorce was, "Come back in three months."

Over the last couple of years I have been seen by the diabetic nurse at my local surgery where the care has been much more supportive.
Last month I did a Dafne course and now after 27 years I can understand the "How" of putting it all together. Yahoo.

I am still getting to grips with experimenting with the ratios but the experimenting is helping me to be adverturous.
I was pleased to read that others are playing with splitting the BI lantus dose. Since Dafne I now inject at 6pm and have very high readings by 5:30pm so think my lantus is running out, I will try the split.

Does anyone else do shift work? I am a care worker looking after people with learning disabilities. How does it effect your readings? I have had terrible problems which I hope the new Dafne training will help me sort out. I get extremely tired after the long shifts, 8hrs then a sleep in at work, and then another 7hrs. I find my BG goes very high and is often effected the next day.

Thank you Mark for your help getting onto Dafneonline, computers are not my first love, and I often struggle my way around them. I have enjoyed looking at the different comments others have left. I look forward to reading more.
 
Jul 22, 2009
Widster 23 posts

Topic: General Discussion / Introductions

Jennifer, if your BG is high by morning i would think that you may need to increase your background overnight? I would talk to your diabetes nurse/consultant about this or try it and observe the results? I suppose it depends when you are taking your background. i inject 20 units of lantus just before bed. When my BG was high i realised it was because my background was too low at 16 so i gradually increased it until it is now 20 units and i usually wake up with a reading between 4 and 7 and not over 10. Just my thoughts. Good luck. Paul
 
Jul 22, 2009
Alzibiff 21 posts

Topic: General Discussion / Introductions

Jennifer / Widster,
Careful!
A high BG in the morning could be the result of a "rebound" from an early morning hypo whilst asleep. Rather than go ahead and start adjusting your before bedtime BI, it may be worthwhile setting your alarm for 3am and testing your BG to allow you to take this reading into consideration with other factors which may be leading to a high waking BG level.

Personally - and this is my view - I don't think that we should be offering advice to anyone on this forum regarding insulin doses and the like - best to describe personal experiences and let others draw upon those.

Widster - agree that this needs discussion with a HCP though!

Alan
 
Jul 22, 2009
Widster 23 posts

Topic: General Discussion / Introductions

Alzibiff/Jennifer,

Yes, i agree that this could be a rebound from a night-time hypo. Setting the alarm at 3am to see what the reading is would be a good way to proceed.

I think this forum is all about advice. Describing personal experiences, what has happened to oneself, how problems were overcome is all advice of one sort or another. People will make their own decisions and i don't think there should be restrictions on what is said, within reason of course! However, as i said, it is always wise to discuss any concerns with a health professional and i think most people who have been on the DAFNE course would realise this.

Don't forget that the whole purpose of DAFNE is to put control back into the hands of the person who has diabetes! We are encouraged to make small, reasoned changes and to see how this affects or overall blood glucose levels. This all contributes to flexibility in our eating habits and the way we live our lives.

Widster
 
Jul 22, 2009
Lizzie 87 posts

Topic: General Discussion / Introductions

I agree with Widster. This forum is open to any DAFNE graduate and people will mean well and give different advice and that is good. It is far better to get advice and support from people who have lived with diabetes, than struggle alone with only a yearly visit to the doctor. I am sure as DAFNE grads we will all realise that before making big changes we should ask our doctor, and that everyone is different so what works for one won't work for another, but we also know how to alter out own insulin gradually in order to control our diabetes and there is nothing wrong with that. After all, that is all a doctor can really do, they are not on call 24/7, all they usually say is 'it could be so-and-so, try doing this and come back in a few weeks' and that is based on reading some books many years ago, not living every single day with diabetes. At the end of the day we are all responsible for our own diabetes, if we do not feel comfortable making changes we don't have to, but if we feel happy with making them responsibly then why not?
 
Jul 22, 2009
Jennifer 11 posts

Topic: General Discussion / Introductions

Hi Widster/Alzibiff,

I spent a couple of weeks a few months ago testing at 3am & 5am and found by BG levels to be ok, it just seems the 2 hours before I wake for the day that something is happening. I have now been advised by my doc to split my BI as they don't think it's lasting even 12 hours, although it should last 24 hours!! At the moment i've had to reduced my dose aswell but my readings are still in the very high teens & am having to correct every meal time. I think i'll just have to spend the next wee while experimenting with levels and discussing with the nurse about what to do next!

It's very frustrating as I feel I am working really hard, being good and getting nowhere. Sad

Thanks for the advice. It's great for me to hear from other diabetics as I don't personally know anyone else that has type 1 diabetes. I also haven't had diabetes for that long so I am still learning all the time. If people are willing to share their experiences or offer me advice about what I can do then bring it on! I also feel the forums are great if people are seeking some help or guidance about their diabetes & want to talk to someone who is living through it and has experience every day of living with diabetes.
 
Jul 22, 2009
Alzibiff 21 posts

Topic: General Discussion / Introductions

Oops! Hope I haven't offended anyone but I was expressing a personal opinion and please don't forget that this foum is open to the entire public of the world which includes people with diabetes who have and have NOT attended a DAFNE course, their relatives, parents and children.

Not everyone has the DAFNE experience to draw on, not everyone is aware of hypo rebounds, the "dawn phenomenon" and the need for careful monitoring of BG levels. (I have only just stared to take BG monitoring seriously after many many years). I stick to my view that I think it is best to describe experiences and explain reasons for various actions when it comes to dose adjustment rather than to suggest to someone that they "try this". Let others draw on these experiences and apply them to their regime by all means.

Still friends I hope <smiley thing>

Alan

p.s. My experience of the HCP people that ran my DAFNE course is definitely not the same as Lizzie's.

"...all they usually say is 'it could be so-and-so, try doing this and come back in a few weeks' and that is based on reading some books many years ago.."

I have had excellent support - EMails get answered within hours rather than days and they have experience of dealing with many people with diabetes rather than my experience which is dealing with just me!
 
Jul 23, 2009
Simon 578 posts

Topic: General Discussion / Introductions

I agree that the advice given here may well be useful - we are all living with diabetes, and anything that can help or make that situation more bearable/manageable is a good thing. We have purposefully put users 'levels' underneath their names on the forums so that you can see if the post has come from a Medical Professional (HCP) or DAFNE Graduate, or someone else. That way users can make informed decisions as to whether to follow advice given on the forums or not. It is true that adjustments made by one person with diabetes may not work the same for another person, but it is also true that the same adjustments may work for both people. My thoughts are this - give advice freely - be open about your experiences, that is what forums are about; but use it with care, if you do make changes do them gradually - as things which are too drastic may have severe effects. If something doesn't work for you, don't hold the advice-giver responsible, it's not their fault it didn't work for you - just try something else, or speak with your DAFNE Specialist. This site was created so Graduates could help each other.

Anyway, sermon over Smile on to the topic in hand... I often find that if I've had a night-time hypo I'll have a headache - even if my BG is 8.3 or something. I remember also on our DAFNE course one of the guys had to do a 3AM test 3 nights out of the 4, and found that he was having night time hypos so reduced his background insulin.

Thanks,

Simon
 
Jul 27, 2009
Lizzie 87 posts

Topic: General Discussion / Introductions

Alzibiff - I wasn't thinking of the HCPs on my course when I said that. There were no doctors there - well one dropped in for about half an hour to answer a few questions, but the hard work was done by a dietitian and a nurse who were and are lovely and always respond to me if I need help. In contrast I have no relationship with any doctor, whether a GP or a diabetes doctor. I see a diabetes doctor for five minutes at my annual review and that's it really, and the next year it is a different doctor.
 
Aug 10, 2009
LizB 23 posts

Topic: General Discussion / Introductions

Hi,

I'm 39 and have had diabetes for 36 years; and was lucky enought to go on one of our PCT's first DAFNE courses back in January this year (2009).

I had heard about the existence of DAFNE about 2 1/2 years ago and had been working with my DSN on using some of the DAFNE principles whilst waiting for the local DAFNE Educators to receive their initial training and get funding so they could run these courses. Anyway, my point is that I wanted DAFNE, asked for DAFNE and was delighted with the enlightened approach to my care when the actual DAFNE course still wasn't quite available in my area.

DAFNE has given me a sound foundation of understanding of my condition and the tools that I craved to make informed choices about my own day to day care – and the changes this is bringing to my life are gradually revealing themselves as things “bed in”. [If you read my post on the development site about how useful the graphs are, you'll appreciate that I still have a lot of work to do to get where I want to be, but a least I now have something to work with!]

Crazy isn’t it that it’s taken 36 years to get to this point!

Good luck and good learning to everyone who's done or doing DAFNE.
 
Aug 11, 2009
Daisy1 2 posts

Topic: General Discussion / Introductions

Hi!!

My name is Stacey I am 29 and I have been a diabetic for 28yrs and am so grateful for the DAFNE course it gave
alot of answers to why I was having so many hypos for all those years. I still need alot of help trying to get my
HbA1c down I was doing sooooooooooo well but now it has gone up again:-(, but the hypos have stoppped I
have now not had one for a year!. It is so important for me to try take better control as we are trying for a baby
so any little tips or words of advice will be greatly appreciated.
 
Aug 11, 2009
Karen Westwood 38 posts

Topic: General Discussion / Introductions

Hi,

My name is Karen and I am 38 years old and have been diabetic for 28 years. I have recently completed a DAFNE course and cannot believe how much it has changed my life. I learnt more in 1 week about my diabetes than I have in the last 28 years. I have taken on board everything that I have learnt and seem to be getting much better results than previously so fingers crossed this will reflect in my next HBA1C.

Stacey, I totally agree that you need to get your HBA1C to a lower level before trying to conceive. I have had two successful pregnancies during my time as diabetic. I know it is really hard work getting your levels correct but it is well worth it. I think that you are lucky to have completed the DAFNE course prior to becoming pregnant as you have a lot more information at your finger tips now. If you were anything like me I felt like I had plodded along for the last 28 years doing lots of guess work. At least now I know that there is a proper formular that actually works!

Good luck
 
Aug 12, 2009
Sheila_Kay 11 posts

Topic: General Discussion / Introductions

Hi,

Everyone keeps talking about how good these graphs are. Where do I find one to try it out?

I am finding dafne helpful but still having troubles mixing it in with shift work. Does anyone have any advise that might help?
Thanks
Sheila