DaFNe scheme

[Carerfortype1]

Hey everyone, so my partner has had type1 for 23 years, been insulin dependent since day one of being diagnosed.
He has been using the DaFNe scheme and over the years diabetes is having its toll on him, he has eye problems (pretty much going blind) amongst other issues.
But the question he has is this; is there anyone else on the DaFNe insulin scheme who is doing everything your told to, but your blood sugars just don't seem to want to co-operate and are constantly spiraling out of control?
If there is someone out there who wouldn't mind getting in touch and being a sort of Penpal it would be very much appreciated! Any help is greatly accepted.
He's depression isn't helping things and the health system doesn't seem to care, or offer help, they say try a different diet, but there is so many things that he doesn't like and will make him physically sick...
Many thanks for listening, it's so difficult sometimes being a partner who doesn't know the full extent of how it feels day to day ( you just see how much pain he's in and there's not much you can do)
Here's hoping someone on here can help us!

 

[Juicyj]

Hello there,

Welcome to the forum.

Many of us have done the DAFNE course which is good for giving us the tools to help manage our type 1 such as using correction doses or knowing when to adjust basal levels, but as we are all unique it’s down to us to use the knowledge and apply it to our own lives with the support of a diabetic team.

Does your partner have access to support from a diabetic team ? So can he speak to anyone if he’s struggling with his levels and get some direct support ?

Uncontrolled blood glucose levels can exacerbate underlying anxiety and depression as the high levels can literally fuel this, so better controlled levels will help to stabilise low mood - it’s a bit of a chicken and egg situation.

How hands on is your partner in managing his day to day care and is he comfortable with correction doses, doing some basal testing ?

 

[Fairygodmother]

Hi @Carerfortype1. I’m sorry your partner’s had such a tough time with Type 1, and it must be hard too for you to know how best to help him. You’re doing the right thing trying to find ways to make his life better.
Where are you @Carerfortype1? If you’re in the UK then your partner could ask to have a talk with a Consultant. At the moment all communication with medics is over the phone unless it’s an emergency. A Consultant might also be able to prescribe the Freestyle Libre Sensor which would enable your partner (and you?) to track his blood sugar levels and use the information to adjust the amount of insulin he needs for carbohydrate, the Consultant, or your partner’s Diabetes Specialist Nurse might help with this. The sensor would also help with basal testing. What insulins does your partner use? If his eyesight isn’t good then reading the results from the sensor would probably need to involve you as well. Would he agree to that?
Does he have a Diabetes Specialist Nurse who could guide him, and you, through ways to adjust his insulin to meet what he needs now? If he doesn’t then you/he should ask to be assigned to one.
The DaFNE guidelines are a good basis to start from but most of us find that we need to juggle what we eat and what we inject to meet our own needs. As JuicyJ says, we’re all different.
I hope that you and he will get some help.

 

[hyponilla]

Hi @Carerfortype1,

I tried following the DAFNE guidelines when I was diagnosed and it didn't work for me. My blood sugars would go through the roof, especially after breakfast. Then I came across Dr Richard Bernstein, who's a type 1 diabetic himself and became an MD to help other diabetics. Just like your partner, diabetic complications were having a serious impact on his life.
https://en.wikipedia.org/wiki/Richard_K._Bernstein

I'd recommend you read his book The Diabetes Solution. It's not the route everyone would go down, but it's good to be aware that many of us are restricting carbs for blood sugar control which is not the standard medical advice given to T1's. You'll find a lot of information about it through type1grit.
https://www.facebook.com/Type1Grit/

 

[Daibell]

Hi. I've managed to avoid all NHS diabetes training and have used this forum and other websites for guidance. Diabetes NHS training can be very good or dire and the important things is to learn the basics and then find out from others such as this forum the shared experience you need. The important thing even as a T1 is to keep the carbs down to a sensible level. This minimises BS spikes and weight gain. After that the correct use of the two insulins is obviously vital. The DN should be able to help (mine is very good but some are awful). This forum offers a lot of guidance on insulin use where needed. If your partner can use the forum that will be great. If you need a few pointers to how to get the insulin use right then do post more detailed questions.

 

[bmtest]

The Dafne course is excellent bu remember its not an exact science.

On a day to day basis you would need an algorithm better than a Utilities energy demand forecast.

In the morning for example the fast acting ratio may need to be higher this is covered on Dafne course.

If you are at home control is easier than if you work in demanding job.

My best advice that I learnt from Dafne is to get the night time dose correct, once you are confidenr with that work on carb counting and fast acting.

Take for example buying bread from supermarket sometimes you wonder how accurate is the carb info as sometimes the slices are like door wedges. You then wonder why blood sugar high later

In summary there are so many variables but test and record and get some help from you diabetic team for guidance.

If you can excercise as this will help with control and circulation.

 

[UK T1]

Hi, Hope you're finding lots of useful things on here. I haven't done DAFNE, but my clinic's own version which I believe is heavily based on DAFNE.
How long ago was the course taken? It is worth remembering approaches change as new discoveries are made. Even as simple as now knowing a particular insulin's action/peak effect more accurately can change your approach to using that insulin.
I was also particularly surprised by the dietician's advice on my course. I'd been carb counting for years, and am vegetarian. I was told not to inject bolus for any vegetables inc root or pulses. I'd successfully been including a total of all carbs in meals for my carb counting ratios for years so could not believe this. I appreciate everyone is different, but attempted following this and had multiple highs. I soon returned to looking at all carbs regardless of their source and found control much easier. The dietician suggested this was perhaps as I was vegetarian so eating a higher proportion of veg and pulses, and got me to try injecting half as much as usual but I still went high. I wonder if you were told something similar and whether this might help?
Out of interest, do others factor in the source of the carbs when figuring out ratios? I'd only do this for alcohol (eg cider or beer) personally.

 

[Ray B]

Hey everyone, so my partner has had type1 for 23 years, been insulin dependent since day one of being diagnosed.
He has been using the DaFNe scheme and over the years diabetes is having its toll on him, he has eye problems (pretty much going blind) amongst other issues.
But the question he has is this; is there anyone else on the DaFNe insulin scheme who is doing everything your told to, but your blood sugars just don't seem to want to co-operate and are constantly spiraling out of control?
If there is someone out there who wouldn't mind getting in touch and being a sort of Penpal it would be very much appreciated! Any help is greatly accepted.
He's depression isn't helping things and the health system doesn't seem to care, or offer help, they say try a different diet, but there is so many things that he doesn't like and will make him physically sick...
Many thanks for listening, it's so difficult sometimes being a partner who doesn't know the full extent of how it feels day to day ( you just see how much pain he's in and there's not much you can do)
Here's hoping someone on here can help us!

 

[Ray B]

Hello there,
I have had Type 1 for 74 years and still I felt as though I learned a great deal from DAFNE.
I am on Humalog and Lantau insulin regimes.
If we look at what DAFNE stands for, without trying to be patronising, it is does adjustment for normal eating. The course I went on was very much about teaching us the skills into calculating carbohydrate content in what we are eating and taking appropriate doses of insulin according to our insulin efficiency. To put it simply I might have 60grams carbohydrate at lunchtime so I would take 7 units of Humalin.
If my pre-lunch blood sugar was a little high I would take a mark or two of extra insulin.
The course I was on gave us books with carbohydrate values in to calculate accurately what we were about to eat.
Again I don’t wish to present these issues as being easy ‘cos they are not.
One more point, if your husband was referred to DAFNE he should have a Diabetes specialist, or contact the DAFNE team for help.
Ray B
Hope this helps