Redoing DAFNE???

Is it possible to retake the DAFNE course? I did it a few years back and various things in the intervening period have meant that I am now confused and unclear about most of it.

I wouldn't say its impossible, however taking the place of someone who has not done it before may seem not very cost effective to the local PCT...................

You can ask I suppose...........

Is there not a refresher you can go on.............?

Have you went over the DAFNE handbook that you have access to on this website?

Is there anything specific you are struggling with? Can we help?

There were some refreshers shortly after I did the course however they were in the day so I had some problems getting leave from work, by the time I had arranged this there was no space left. I wish they would do something in the evening or at the weekend. After about a year these stopped and I now get zero support - eye checks once a year and a consultant appointment with someone who I don't know from Adam once a year and that's the lot.

What I need is to work through the process of finding out the ratios again with an educator. It worked on the course as it was isolated from 'real life' - the whole week was spent on the course so that was a big chunk of time I could devote to diabetes and only diabetes and there was nothing else to interfere. When I try it alone it does not work as real life interferes and I cannot work out which of the many confusing factors has caused a high or a low, and if I am at work I don't have time to look at numbers and plot graphs of what my blood sugar was through the day. I often don't even have time to check my blood sugar, I feel like I am always running to catch up. I also need help with sick day rules and carb counting so pretty much the whole lot. That is another reason why a refresher would not work - you have to choose only one or two things to work on. Also I need a similar level of supervision as I did on the course and the educators are far too busy to give that sort of help outside specifically arranged events like the DAFNE course.

I did try to access the handbook however I only got an error message.

I just don't know what to do. When I did DAFNE things seemed to work for the first time in 15 years. I was eating sensibly and had some understanding of my diabetes and started to lose weight. However after that I was forced into a bad decision by my GP and had family illness and everything fell apart. I just want to get back to how things were and DAFNE is the only thing that ever worked for me. I don't know what else to do since my doctors are not interested except to bully me into weight loss surgery or taking unecessary medications, and I am not able to get the counselling I desperately need.

I would contact Marke or Simon who will help you access the handbook, it will help you..................

To be successful in dose adjustment you need to get blood sugar readings consistently before meals, if this isn't happening then this needs to be addressed before anything else...........

how bad is it when you say you often dont have time to check your blood sugars.....?

Have you got a dairy/homemade sheet to write down your results?

You dont need to look at numbers at work, or at least make any decisions on long term dose..........you can give a correction dose and a dose for your food, if the ratio is wrong, then you can analyze that later at home......

I would also say getting the carb count is important, as this would hinder your dose decisions if the count was wrong..........

What part of counting are you struggling with?

I would try and get on another course if you can, however what will make it different this time round..........?

In the mean time me and others on here will be happy to help you in any way we can......

Thankyou for being so kind.

The truth is, I will admit to you, I only really check my blood sugar when I feel high or low. I have stopped checking on a regular basis and stopped writing it down. I just feel low about it as every reading seems high or low and I don't know why.

I seem to be always doing correction doses but I don't know where to start in working out what doses are right or wrong.

I am Ok with carbs when eating prepackaged foods which have carbs per portion on them but am not so good with anything that does not have a carb value written on it or only has it per 100g rather than per portion. The problem was that on the course I could not afford to buy expensive food in the canteen every day so missed out on all the weighing and measuring parts of the course.

It may not be that different doing DAFNE again. However I am resolved not to listen to my GP if they try and make me do anything I am not happy with. Also, I cannot overemphasise how world shattering DAFNE was for me. For some reason I seem to slip through the net and seem to have some sort of invisibility cape on so doctors cannot see me. I was never told how to count carbs or measure my insulin in 15 years. For several years I did not see any doctors at all and nobody said anything. I was at the point where I was terrified of my diabetes, thinking about it made me cry I was so terrified of complications and did not know how to make my blood sugars right. So when I got onto a DAFNE course I had to take in all the things that I missed in 15 years and it was a lot to absorb. On the day when I was trying to figure out my insulin dosage I ended up in hysterical tears as I was confronted by this massive fear I had been avoiding for so long. It was an intense emotional week. I was happy afterwards as my doctors were happy with me for the first time ever. But then I was forced into taking medication I did not want or need and that messed up my blood sugars and then I was comfort eating and since I had donned my invisibility cloak nobody noticed and here I am again, in a mess of problems and not knowing where to turn for help. I am pretty sure I am depressed and I am fighting to make myself do anything to be honest, I just don't care and want to ignore everything. I know I will feel better if my blood sugars are less erratic. But without help I can't make them right. The only time any nurse or doctor has taken an interest was when I was on DAFNE.

What I really need is ongoing support from a nurse plus counselling but that is not likely. So I am stuck in this cycle of falling over and picking myself up again like a silent slapstick movie on a loop.

I think what you need is motivation, as opposed to the education, even though you may have forgot most of it. The best source of motivation is from yourself and your team. Are you not in contact with the nurses that done your DAFNE course?

They can help you but not if your not testing on a regular basis. Its the regular testing and spotting of patterns which lets you change your doses confidently........

Start testing today, if you dont have a diary, just record it on paper, so blood sugar, carbs, quick acting insulin. I have a spreadsheet I could email you that I use for writing information on............

As soon as you get some results down on paper you can email me them back and I could make some comments, once the ball is moving it gets easier..............

What insulin are you on? How much background do you take and when?

No I am not in contact with the nurses. I don't know why. Like I said doctors seem to lose interest in me.

I am on Humalog and Lantus. The Lantus at the moment is 30u before bed but I am not sure if that is right. I kept increasing it until my blood sugars through the night were reasonable as I kept waking up high but during the day as I mentioned it gets confusing.

Thanks for helping.

OK....................

So you need to start from the beginning, which is to test your Lantus dose..................so dont have any food or QA 5 hours before you go to bed, do a test before bed, record the result...........even if its high [use discretion] dont correct it..............test before breakfast, record the result............

If you are within 1-2mmol/l then the Lantus is doing its job. However, you should do about 3 consecutive days to make sure the results your seeing, whether there right, too much or too little, are consistent..............once your sure bump up your dose if your readings went up over night, and bump down if your reading went down, or do nothing if your blood sugar held steady.........when changing background doses its wise to do a 3am test to make sure your not going low overnight, which could result in a high and therefore possibly give the impression you need more when in fact you dont..........

Once this is right, you can move on to your QA ratios..............

REMEMBER that the effects of changing Lantus, as opposed to Levemir, take a day or 2 to show up, so you should be patient at first.........

Explaining the next stages might just complicate things for you, so if you concentrate on you Lantus dose for now that would be good............

Try and contact the DAFNE trained nurses at your clinic and make an appointment, this should be possible as its not an official clinic appointment, they will be better equipped to get you back on track as they will be face to face........

Would you like me to email my excel spreadsheet to you..........?

Thanks for all the help.

If I don't eat for 5 hrs before bed (11pm) I will need to have tea around 5pm, so that's not doable. Does it need to be 5 hours? What is the minimum length of time it could be? I usually go to bed around 11 and get in from work about 6pm, so I would need to get going immediately on tea and eat something that doesn't take long to make to have it early enough. Or should I skip tea altogether or would that affect the results?

And how high would I need to be before bed to make it worrying enough for correction? I panic when I am high and often overcorrect. I would worry if I am high before bed.

Would the fact that I don't know my QA ratios affect the results of the Lantus tests, if that makes any sense? I mean, if I am high/low, how do I know whether it is a result of the Lantus being wrong or a result of the QA ratio being wrong?

I am sorry for being overcautious about all this. But like I said I am really afraid of doing something wrong and it makes me feel really stupid to not know any of this after nearly 20 years. Even thinking about it now makes me worried and frustrated and I feel like crying but I know I have to try.

Tbh, I don't know if the nurses or doctors can help me. They are nice people but they are judgmental about my weight and cannot see past that to helping me sort out my diabetes.

The reason for the 5 hours is because by then all QA insulin from dinner and Carbs from your dinner will be gone, leaving nothing but your Lantus in your system, this means you can accurately see how its doing overnight..............

If you still had insulin and carbs working then your pre bed test would be different from the morning......................the 5 hours is the maximum the QA insulin works is all, I am Novorapid, but it doesn't last that long in me, so it could be the same for you, however when testing you want to eliminate all the variables.......

You could set an alarm for 12:00 or after that, do a test, then back to bed..............

You could skip dinner or have a carb free dinner [meat, cheese, eggs, most vegetables], then you would not be taking QA insulin.........

Whatever level you feel is uncomfortable would be the level to correct, but for test purposes you really need to be free of QA insulin. The low teens would be perfectly safe just for testing your background, but as I say, if you feel rough, just correct and try again another night.......why do you think you panic when your high, do you feel high?

If you dont know you ratios its likely your on a 1:1 ratio, which equates to 1 unit of insulin for 10grams [1CP] of carbohydrates.................and this wont effect the test, as your not concerned with that insulin for now.....................how much insulin do you take before eating, just random guesses? You dont what insulin could be causing the problem, that's why you need to test your background, to make sure its correct..........then you know if there are any issues it will be your QA [Humalog]..........

Dont feel stupid, I was in the dark also, at least until DAFNE...............................your course must not have been conducted very well.............

All you are looking for from the nurses is advice on adjusting doses, your weight has nothing to do with your blood sugar control, I have sacrificed my weight for good blood sugar control, well, I eat too much, but my blood sugar has more of a priority..........

You can only ask, you need to, you have a right to the same care as everyone else................

You can get support on here, and over at www.diabetessupport.co.uk.........................

I will help as much as I can.................