Introductions

Hello everyone.

My name is Jennifer and I'm 24. I was diagnosed in March 1989 at the age of 5 and so I've been diabetic for roughly 20 years.

When I was 20 years old, I felt my control was starting to slip and I couldn't understand why. I think I was doing some form of "counting in a cloud" because I'd say "okay, sandwich is about 4 units" and what not, but it had reached a point where my memory was letting me down or my body was changing now the hormones were calming down (I'm becoming an old lady as the doctor put it haha)..... and so I was introduced to DAFNE. To put it simply, I am so glad I was. I did my course in April/May 2009 so I'm fairly newish. I only had my first post-course check up the other day.

Luckily my HbA1c has usually been okay, but with DAFNE, I now have a lot better understanding on what's happening with my body but I still have some issues to resolve... for example, after the recent check up, I've begun looking at splitting my Lantus dose into two injections because it appears to not be working over the 24 hours. Despite issues like that, I do feel I've got my control back again and I'm definitely a lot more confident and happy for it.

It's certainly good to see some other people around my age on here too. When I attended my course, I was the youngest by quite a bit with so many of the others having complications that I just simply did not have (nor want to have) and some having many years on top of my little 20 years of experience! I do appreciate the experience though, but it's definitely good to see some similar ages too. ^_^

Another perk about it as well is the fact DAFNE makes explaining to loved ones a lot easier. Naturally my boyfriend is very curious and keen to learn more about my condition so he can help me if I need it and DAFNE has been such a help to us with that. I now have a lot of faith that my loved ones will be able to cope and understand things a lot better now.

I love Nigel C's comment: "I no longer see diabetes as an illness, but more of a game - the better I play, the lower my HbA1c! Best of all, I'm in control!"
Has inspiration written all over it! <3

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'.

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!)

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).

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)

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.

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!!

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

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 !

"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