DAFNE....the story so far.

[eggyg]

I started my week long course yesterday morning. Me and three fellas! Two young lads 23/24 and a guy about my age with 35 years under his belt. One of the young lads was diagnosed at 18, now 6 years later is suffering from terrible complications. He has had a cardiac arrest, numerous hospital admissions with DKA and in a coma, and at one point was down to 5.5 stone, now only 8 stone. He admits he just carried on as normal and reading through the lines obviously didn’t always take his insulin. His Hba1C is 90. He says this course is to help him with “ damage limitation”. He doesn’t have a clue about carb counting at all and I have really never ever seen anyone eat as much as he does. He has snacks all morning, soup, bread, curry and rice with naan yesterday, today soup, pasty, beans, chips, and then straight after that, a very large baguette. He is just injecting willy nilly all day without a clue. It’s really quite shocking it’s taken 6 years for him to seek or get help. He also has 4 children! I hope this week helps him a wee bit. I will report on others as week goes on. I am enjoying it but feel I am the only one that is understanding it at the moment.

 

[Northerner]

Oh my, that poor lad When I did my course (not DAFNE) I was about 30 years older than the others. There was one guy who had been diagnosed for 5 years and thought you only needed to count the sugar, not total carbs, in calculating doses, and treated hypos with a mars bar😱 He learned a lot. It's a real shame that your course member has had to go through so much before getting on a course that might have averted many of his problems.

How are the instructors, do you find them knowledgeable? Keep reporting, I hope the course helps you! 🙂

 

[Amigo]

I started my week long course yesterday morning. Me and three fellas! Two young lads 23/24 and a guy about my age with 35 years under his belt. One of the young lads was diagnosed at 18, now 6 years later is suffering from terrible complications. He has had a cardiac arrest, numerous hospital admissions with DKA and in a coma, and at one point was down to 5.5 stone, now only 8 stone. He admits he just carried on as normal and reading through the lines obviously didn’t always take his insulin. His Hba1C is 90. He says this course is to help him with “ damage limitation”. He doesn’t have a clue about carb counting at all and I have really never ever seen anyone eat as much as he does. He has snacks all morning, soup, bread, curry and rice with naan yesterday, today soup, pasty, beans, chips, and then straight after that, a very large baguette. He is just injecting willy nilly all day without a clue. It’s really quite shocking it’s taken 6 years for him to seek or get help. He also has 4 children! I hope this week helps him a wee bit. I will report on others as week goes on. I am enjoying it but feel I am the only one that is understanding it at the moment.

I bet you end up ‘mothering him’ Eggy!

 

[mikeyB]

Well, if he’s survived so far, he can for sure weather Eggy mothering him. Somebody needs to.🙄

 

[Amigo]

Well, if he’s survived so far, he can for sure weather Eggy mothering him. Somebody needs to.🙄

He’s heading for trouble for sure! 😱

 

[eggyg]

I bet you end up ‘mothering him’ Eggy!

Well how did you guess? I asked him yesterday if he was ok as he was very pale! The other young lad seems pretty clued up, he is a farmer still living with parents and eating farmer’s food but seems able to understand the theory. The older guy even after 35 years seems very confused, he just can’t get his head around it yet. He is a big bloke and has lost 7 stone after gastric bypass surgery, his BGs are all over the place, has lost his driving licence after having assisted hypos and loss of hypo awareness. He is doing this to help get it back. I learnt a lot about hypos and DKA today, we have been given a ketone meter and they will put the strips on our prescription. The trainers are good, not too patronising and good fun. We have a DSN and a dietitian. Was shown the eat well plate today. I said nowt!! Going out for our lunch today to a local pub to put what we have learnt to the test. Started writing this last night but I was absolutely shattered, it is very intense and the numbers and ratios can really do your head in. Still enjoying it though.

 

[Shiv Gaffney]

Will be so worth it Eggyg - wonder about this older guy as if he has it so long he must have been around in the time of exchanges and if he had an understanding and/or followed that (and there is the question!) his head should be able to get at least somewhere around the carb counting! DAFNE really helped me with my hypo awareness (still a work in progress mind you). Enjoy lunch

 

[grovesy]

Will be so worth it Eggyg - wonder about this older guy as if he has it so long he must have been around in the time of exchanges and if he had an understanding and/or followed that (and there is the question!) his head should be able to get at least somewhere around the carb counting! DAFNE really helped me with my hypo awareness (still a work in progress mind you). Enjoy lunch

Around that time is when they phased out exchanges and pushed healthy eating.

 

[Lucy Honeychurch]

I found the course so helpful and have been carb counting ever since. Hopefully the young lad will learn from the course and make the required changes to his lifestyle.

 

[eggyg]

Had a very good day today, it all seems to be falling into place with us all. Had lunch in a local pub and I deliberately chose a meal I struggle to count. Steak pie and chips, yummy! I even split my dose because it was a fatty meal, never done that before. It seems to have worked. Every morning we show our diary and try and see patterns and see where changes are needed. It seems I need to lower my morning basal, so tomorrow I will do that. My BGs are fairly level and have remained so all week, but the biggest change has been the older guy, he went from every test being in the high teens at the beginning of the week to 9s and 10s today. He did basal testing this morning and it shows his basal is too low. Also the Diabetes consultant visited us and I asked him about my weird diabetes and he was so knowledgeable and told me things I had never even thought of, he also said being a pancreatic diabetic can be a challenge and I will always be insulin sensative and be prone to hypos. Not exactly a surprise but it made me realise I am doing the right thing in maybe being quite strict with my diabetes. Will be quite sad to part company with my new pals, but we are going to set up a WhatsApp group to support each other.

 

[stephknits]

Fantastic to hear your feedback eggy - I knew you would get so much out of doing it. 🙂

 

[Ralph-YK]

I'm glad things are going well. 🙂 It's good to hear.

 

[Matt Cycle]

Well done eggy and glad you've enjoyed it. 🙂 I think we sometimes forget on here that there are a lot of people with T1 who are struggling. On my DAFNE course was a lovely lady who'd had it 48 years (from the age of 5) but was finding it difficult - the calculations, theory and just simply dealing with it is a hell of a lot to manage along with the general 'stuff' that people have going on in their lives. I think a number of people just survive with it and these are the people that need the most help from HCP's and the use of new technology but often don't seem to get it. I'm not surprised the average HbA1c for T1's is so bad.

 

[trophywench]

Matt - those people and there are still lots of them - just don't have madly enquiring minds. Though I was told I just had to accept D and what 'they' told me and though I did do that for over 20 years - there were always lots of things I 'wondered if' or 'why' and 'how'. Perhaps it's cos I'm nosey? Once I found a place where I could talk to more knowledgeable people - and Alan Shanley is one, plus Pattidevans and a guy called Terry Gault and lots of others here there and everywhere in the world - I really enjoyed my steep earning curve. It all absolutely made sense to me, so I absorbed it like blotting paper. I catch on to stuff that makes perfect sense pdq - as long as someone explains it properly. I had a great boss who taught something unfathomable from the title called 'Quantitative Methods' to people studying for their insurance exams, by telling them the theory and then giving them 'for instances' for illustration.

You'll have noticed I still find it the best way to explain stuff - and I still find it hard to accept that other people aren't like me and have a thirst for new, useful, knowledge.

Some people only need a little push in the right direction to open the door and let it in - and courses like DAFNE can do it. You just hope the training sticks once they are let out into the wild again! LOL

 

[SB2015]

my steep earning curve

If only they paid us for all that we learnt once diagnosed!!!

Those who have the chance to DAFNE would be very rich. Such a good course.

 

[eggyg]

Well I am shattered! Been a great week and made some new friends. I agree @trophywench about wanting to know more. When I was first diagnosed, wrongly, as type 2 I bought a book and found this forum. If I hadn’t and just accepted what my DSN told me I definitely wouldn’t have been on a DAFNE course for the last week! Knowledge is power I think, the DSN who was running the course was fantastic. She has a son with diabetes, diagnosed at age 4, already a nurse, she took a degree in diabetes as she wanted to know how best to help him and now she is passing on the knowledge. It did amaze me that the others on the course were just “ floundering” for want of a better word, and kept saying “ why didn’t I know this, why hasn’t any one told me this?” Even the young guy with the complications who never kept his appointments and has had one foot check up in 6 years and wonders why he has neuropathy in his feet at aged 24. There is definitely a degree of head burying amongst people and we have said it before on here, we are a minority of folks wanting to help themselves. Ultimately it’s up to us, we have the tools and the technology, use it! I have set up a WhatsApp group for the four of us and I have told them to message me anytime for support or just to rant. They were all amazed at my control and HBa1C, there’s were almost double mine, and the whole course made me realise how much I had learnt from the forum. So thanks everyone, you’re amazing. 🙂

 

[stephknits]

I still meet up with some of those on my DAFNE course over a year on - infact one of them and his wife are coming to dinner tomorrow night. We were on the first DAFNE course in our area and have since been to an annual meet up arranged by our course leaders for all DAFNE graduates in our area. We have also set up a Facebook page. I have spoken to the local CCG panel about the importance of the courses when the funding was in doubt, I have spoken at a DAFNE interest meeting at our hospital, I also write to the hospital boss explaining the positive impact of DAFNE on my diabetes management. I really believe, like others have said that knowledge is power and think the dedication and support offered by our course leaders, both before, during and after the course has been brilliant.

 

[trophywench]

I'm glad my course was over 4 weeks - found it much more user friendly to do one day a week and have practice and recording and thinking time in between sessions. More dedicated time from the HCPs for personal advice and specific things that the person didn't want to air 'generally' - I was glad of it cos I was under a considerable amount of stress from various sources, work and home, at the time and it had had devastating (to me) effects on my control. I was severely lacking in confidence about everything and anything and it helped a great deal.

BERTIE and their offshoots like 'mine' don't issue 'degrees' LOL It's only a quick way of signifying you've learned whatever and are 'practicing' though, isn't it? You could just as easily walk away and never do so though, couldn't you? Thus signifying you never really learnt the messages at all - cos how can you not, if you have! LOL