Do I have to talk when doing a DAFNE course?

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SkellingtonSkelly

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Type 1
My diabetes clinic won’t let me do a DAFNE course, they said I have to talk which is something I do struggle with.

But they also want me to carb count. Which I have been doing, and every time I do it I end up having a hypo. Because I don’t know what I am doing I’m struggling. I would like to go on a DAFNE course, but they just won’t let me. Which I don’t think should be up to them. Just because I don’t talk and I am quiet.
 
Do you struggle with social anxiety? Is it just strangers? Are you OK with family, friends and partners?

I think I used to struggle when I was much younger with this sort of issue but not now. Still get a surge of adrenaline in a group meeting when it's mine turn to introduce myself but everyone is the probably feeling the same. There are always people who dominate and those who are quieter in a group setting.

You could always tell them that you will talk and then not or just do the bare minimum. You will get an awful lot out of it if you contribute and listen to other people's contributions though.
 
When I did the DAFNE course, the biggest thing I got out of it was the interaction with the others on the course.
Is your concern talking in public or talking to strangers?
My course was small (about 10 people) but most of the talking was done in pairs.

However, if this is a struggle for you, how do you feel about online courses?
Bertie Online is an online version of DAFNE.
 
SkellingtonSkelly said:
My diabetes clinic won’t let me do a DAFNE course, they said I have to talk which is something I do struggle with.
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I've not done a DAFNE course but I imagine the one I did is similar (just a local version). And yes, it was a group course (small, so half a dozen or so people) where everyone was expected to interact. (It's not a series of presentations which we watched, it's intended to be interactive, both to check that we've understood things and so we can ask questions.)
 
Peely66 said:
Do you struggle with social anxiety? Is it just strangers? Are you OK with family, friends and partners?

I think I used to struggle when I was much younger with this sort of issue but not now. Still get a surge of adrenaline in a group meeting when it's mine turn to introduce myself but everyone is the probably feeling the same. There are always people who dominate and those who are quieter in a group setting.

You could always tell them that you will talk and then not or just do the bare minimum. You will get an awful lot out of it if you contribute and listen to other people's contributions though.
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Yes I have severe social anxiety and can only talk to those I personally know. So strangers and public talking is not something I’m good at. I have been to groups before (I.e youth groups) where I barely spoke, but still got to join in on things.
 
helli said:
When I did the DAFNE course, the biggest thing I got out of it was the interaction with the others on the course.
Is your concern talking in public or talking to strangers?
My course was small (about 10 people) but most of the talking was done in pairs.

However, if this is a struggle for you, how do you feel about online courses?
Bertie Online is an online version of DAFNE.
Click to expand...
It’s public and talking to strangers that is difficult for me. I’ll have to talk to them next month, when I have an appointment. But I just think giving me a pump and not allowing me to even try to do the course was wrong on their part. I’ve been having bad hypos because I am unable to carb count properly and I have a major fear of hypo episodes which is why I was given the pump.
 
Can you ask to see a dietician for 1:1 appointments to learn carb counting if you’re not able to do the group work involved in Dafne?
 
Lucyr said:
Can you ask to see a dietician for 1:1 appointments to learn carb counting if you’re not able to do the group work involved in Dafne?
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Haven’t seen a dietician for exactly a year and 2 months. She went on maternity leave and then they didn’t make me any appointments. My first appointment in over a year is next month which I doubt they’ll say I can speak to a dietician.
 
SkellingtonSkelly said:
Haven’t seen a dietician for exactly a year and 2 months. She went on maternity leave and then they didn’t make me any appointments. My first appointment in over a year is next month which I doubt they’ll say I can speak to a dietician.
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I don’t follow, if you have an appointment with a dietician next month why can’t you speak to the dietician? You need to call/email and ask if you want to speak to a dietician and don’t have an appointment lined up with one.
 
Lucyr said:
I don’t follow, if you have an appointment with a dietician next month why can’t you speak to the dietician? You need to call/email and ask if you want to speak to a dietician and don’t have an appointment lined up with one.
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Sorry. I didn’t make sense I was in a rush with that last comment.

I meant. Next month I have an appointment with the diabetes clinic not a dietitian. I haven’t seen the dietitian for over a year because she was on maternity leave and they didn’t send me to a new one. The dietitian I saw before she left on maternity, is the only one who understands my bowel condition so I would like to keep seeing her. But I haven’t been to the diabetes clinic for over a year, I’ve been to the pump clinic, but not the proper diabetes clinic to see an actual doctor there. If that makes sense.
 
SkellingtonSkelly said:
Sorry. I didn’t make sense I was in a rush with that last comment.

I meant. Next month I have an appointment with the diabetes clinic not a dietitian. I haven’t seen the dietitian for over a year because she was on maternity leave and they didn’t send me to a new one. The dietitian I saw before she left on maternity, is the only one who understands my bowel condition so I would like to keep seeing her. But I haven’t been to the diabetes clinic for over a year, I’ve been to the pump clinic, but not the proper diabetes clinic to see an actual doctor there. If that makes sense.
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Have you recently called/emailed/asked in person to have an appointment with a dietician? They won’t know you want to see one unless you do so that’s the place to start. You don’t need to wait until your next appointment to ask.
 
If the dietician you would prefer to see went on maternity leave with the intention to return, then even if she took the full year plus added all that year's annual leave on as a chunk afterwards, she should be returned now 14 months later. It may be worth asking to be formally referred back to her in case your dietician referral was closed while she was on maternity leave since you didn't want to see another dietician.
 
Lucyr said:
Have you recently called/emailed/asked in person to have an appointment with a dietician? They won’t know you want to see one unless you do so that’s the place to start. You don’t need to wait until your next appointment to ask.
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I’m waiting till I see them next month as I already have a list of what I want to talk about with them considering I haven’t seen the diabetes clinic team in a year. It’s hard to speak up for myself so I have to get my mum to speak for me in appointments. And they aren’t that good with emails either. As I only have the DSNs email, and not the doctor, I’ve been told by them that they can’t do anything about my appointment and I have to wait to see the doctor at my appointment.
 
SkellingtonSkelly said:
Yes I have severe social anxiety and can only talk to those I personally know. So strangers and public talking is not something I’m good at. I have been to groups before (I.e youth groups) where I barely spoke, but still got to join in on things.
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Then the DAFNE course should surely make reasonable adjustments for you. If you’re able to attend but just can’t handle talking to others, I can’t see any reason why that can’t be accommodated.

The other option is to take someone with you and let them do the talking.

The BERTIE course @helli mentioned above is a good option too.
 
SkellingtonSkelly said:
It’s public and talking to strangers that is difficult for me. I’ll have to talk to them next month, when I have an appointment. But I just think giving me a pump and not allowing me to even try to do the course was wrong on their part. I’ve been having bad hypos because I am unable to carb count properly and I have a major fear of hypo episodes which is why I was given the pump.
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When you say “carb count”, do you simply mean getting the amount of carbs correct, or do you mean that your mealtime ratios are wrong on your pump? That is, what’s contributing to your hypos - adding up the carbs incorrectly, or having the wrong ratios for your meals.
 
Inka said:
When you say “carb count”, do you simply mean getting the amount of carbs correct, or do you mean that your mealtime ratios are wrong on your pump? That is, what’s contributing to your hypos - adding up the carbs incorrectly, or having the wrong ratios for your meals.
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It’s mainly counting carbs. Last night I gave myself 70 grams of carbs, ended up with a really bad hypo which made me really ill. They haven’t taught me, I’ve tried doing it myself like learning, but nothing works. I just want to learn.
 
Sorry to hear your team aren’t being very flexible in the way they are offering you support @SkellingtonSkelly

There are lots of online resources which might help you improve your carb counting and dose adjustment including:

A basic overview from Diabetes UK

The nuts and bolts of carb counting

When you live with type 1 diabetes, carb counting is a great way of managing your blood sugar or glucose levels. It can give you more freedom and flexibility in what you eat when you're preparing meals at home, grabbing food on the go or eating out. Carb counting does take some time and effort...
www.diabetes.org.uk www.diabetes.org.uk
Free downloadable guide to carb counting from Diabetes UK:
http://www.diabetes.org.uk//upload/How we help/catalogue/Carbs-Count-2012.pdf

And the free online course from Bournemouth hospital, which covers much the same ground as DAFNE
www.bertieonline.org.uk

Alternatively you might like ‘Think Like A Pancreas’, a practical and well respected book by US endocrinologist Gary Scheiner.
Think Like a Pancreas by Gary Scheiner

Also ‘Carbs and Cals’ is a helpful resource for carbohydrate estimating - available as a printed book or app, with loads of pictures of differing portion sizes of various foods along with carb and nutritional info.
 
SkellingtonSkelly said:
It’s mainly counting carbs. Last night I gave myself 70 grams of carbs, ended up with a really bad hypo which made me really ill. They haven’t taught me, I’ve tried doing it myself like learning, but nothing works. I just want to learn.
Click to expand...

So are you sure your count of 70g was right? And how much insulin did you take for those 70g of carbs?

Sorry you had a bad hypo - they’re horrible. Do you have a Libre? I set my Low alarm at 5.6 and I’ve found that’s helped me ward off most hypos.
 
Hi.
Really sorry that you are struggling with nasty hypos. How long have you had the pump and can you be sure the basal profile is set up right for you. If your basal insulin isn't correct then no matter how good or accurate your carb count, you can easily hypo or go hyper. Basal profiles need tweaking from time to time. If you are female that may need to be adjusted around your monthly cycle but all our basal needs change in relation to exercise and stress and illness and alcohol and ambient temperature and all sorts of things, so if it is a while since you did a basal test, then that might be the first place to start. If you don't know how to do a basal test then I believe there is a thread in the Pumping and Technology section which gives instructions. Having your basal insulin correct is like a good foundation for everything else. If it isn't right, then everything becomes wobbly and unstable and unpredictable.
DAFNE is about so much more than just carb counting and spending time with other Type 1s is one of the biggest benefits of the course. There were only 6 of us on my course plus the DSN and dietician. Like you, I struggle with social anxiety particularly in groups and whilst they were reluctant, they did allow my sister to come along with me until I was settled, so they should make reasonable adjustment for you. It is a difficult balance because there is an element of confidentiality because we are sharing our personal results with the group, and extra people can be intimidating for others but your situation should be explained to those taking the course and some allowance made. It is a great course and I am really pleased that I pushed myself to go and it improved my confidence in managing my diabetes well.
It is possible to do DAFNE remotely though and whilst I would encourage you to do it in person because I really feel that you get more out of it that way, many clinics are only offering it as a remote option since Covid, so it may be worth asking about that possibility. I can't see any problem with your mum sitting in with you on the remote course.

Anyway, I just wanted to offer my support as someone who has a similar problem with groups and say that I am really pleased I pushed myself to do it and to wish you luck getting your levels more stable, but to suggest that perhaps your carb counting isn't the issue and it may actually be a basal profile issue, so worth checking your basal first.
 
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