Constant guilt

[tinyroman]

This is the first time I've used the site so I hope I'm in the right place for the subject. I'd like to vent a little as nobody in my life seems to understand my feelings, and I hope perhaps other T1 diabetics can give some support or comfort. It will involve a lot of usage of the word 'I', which I hate doing.
My T1 started in 1981 when I lived in Canada. Having two babies and an errant husband, no other family, meant that I was constantly terrified about something happening to me, and the babies being in danger. I returned to England two years later to be with my family. The terror changed first to frustration that my sugars weren't under control, then to guilt that I was so useless in controlling them.
I can truthfully say that for 30 years the diabetes has made me constantly feel so guilty about just about everything connected with the condition; feeling so bad when I test - I've carb counted and injected accordingly at the last meal, but what are the sugars going to be?they're never what i expect.When I eat, or even think about food, my guilt pounces on me, saying 'you shouldn't be eating that' or 'you're eating too much' or 'it's the wrong time'. Sometimes I'm overwhelmed with the guilt of not being in control. It should be simple; carb count, calculate and adjust insulin, eat. My sugars seem to just do whatever they please, no matter how healthily I eat, exercise or calculate carbs.
I've been on meds for anxiety and depression for about 10 years now, as well as meds for other conditions which have arisen over the years. I'd class myself as being pretty healthy, really. It's just this never-ending guilt. Sometimes I'm so fed up I'll eat a packet of chocolates to try to make myself feel better, but then the tests show the results of doing that, and I feel even more guilty.
If anyone reads this, thanks so much for 'listening'. Maybe someone else has had similar feelings and gotten rid of them? Thank you.

 

[Snodger]

hey tinyroman,

I do feel for you and I know what you mean about struggling with guilt. And sometimes it doesn't matter how carefully or hard you try, it still goes wrong.
Are your sugars really out of control, or are you comparing yourself with targets that doctors bang on about but very few of us can actually reach? If your HbA1c is around 8.5ish or below, you are doing better than most T1s.
Have you been on DAFNE or one of those types of courses? They might help - you get to meet other people with T1 and can share the guilt (!), and also you can eat chocolate and not feel guilty - because they teach how to match it with insulin and still keep on track.
I'd love to be able to say 'stop feeling guilty, it's not your fault' and make it magically go away but life doesn't work like that. I got rid of my guilty feelings (or at least, I got them under control) mainly by talking to others with T1 and gradually getting the whole thing into context. I realised I wasn't so bad after all, and actually there was lots and LOTS to be proud of. I know we never get credit for the hard work we have to do just to stay alive, but nevertheless you are doing that work and you should be proud.

there should be a smily for a big sympathetic hug but there isn't so here's a waving one. :wave:

 

[tinyroman]

Hi Snodger
Thanks so much for the lovely reply! I was struck by your saying that the HbA1c of 8.5 wasn't bad. I've always thought that was terrible. It used to be about 11 but I worked hard to get it down and was still told it was too high. Seems it should be about 5 or 6 but maybe this is one of those impossible targets you mentioned?
Perhaps I'd have a more realistic view if I met more T1 diabetics and was able to compare things. I'm a bit unhappy about attending groups though. I did the DAFNE a couple of years ago and found it really useful and is probably how the Hb went down.
I'm glad you got your guilt under control and are more confident, that's great; maybe there's hope for me too!
I wonder why doctors - it"s my GP who is so disapproving really - make me feel so bad about my diabetic control?
Thanks for the support, Snodger. I really appreciate your answering!

 

[Snodger]

Glad it was helpful. PM me if you need to talk more away from the public forum.
Only 7% of T1s are able to reach the target they teach on DAFNE, 6.5. Of course it would be great if we could all get there, but our bodies don't work like healthy bodies.
It's easier for T2s (26% of them hit that target because their bodies work with them a little bit more than ours*) and your GP may have only met T2s. So s/he is comparing you with the wrong group. It's like comparing you with Usain Bolt and wondering why you don't run as fast!

It's really great you got down from 11 to 8.5. You've hugely reduced your risk of complications just by doing that. If you can, cut all the negative people out - change your GP if you can't persuade him or her to be a bit more sensible.

* PS I got these figures from the most recent UK National Diabetes Audit, if anyone asks.

 

[hanadr]

TR
If controll seems difficult, I would suggest you try reading Dr. Richard Bernstein's "Dr. Bernstein's Diabetes Solution" It may give you some help and since it's written by a lifelong T1 diabetic, at least you know he understands. You may need to ask your library to get it for you. Even if it doesn't solve all your difficulties, it may give you some helpful ideas
Hana
PS you've nothing to feel guilty for, I suspect you've not done anything wrong.

 

[jopar]

Hi Tinyromen

I think that you probably could do with some counselling as you probably need someone who can help you explore and learn how to draw lines under the things that make you feel guilty, such as a naff BG result, you go heck, lets look at why that happened, so you can do your adjustments, then draw a line under so you don't feel guilty about it.

DAFNE is a brilliant foundation cause for getting people up and running on carb counting, but it's a foundation course, and there is a lot more to Carb Counting than just adding up the carbs, adjusting the insulin to the BG...

Two important areas that effect control, one is basal profile and the other is a lack of understanding of the various carbs!

Basal Profile..

If your basal is out, then everything else will be as well basal is the kingpin to good control.

But not only have you got the problem of the insulin being out, you've also got the problem can your insulin flatten the peaks and troughs of the basal profile to even flatish wave to work from!

because what can happen, is that the basal profile has high peaks and deep troughs, so you end up with at times, having not enough insulin, as any quick injected to cover carbs, has to work as background as well.. And at other times you have the background combining with the quick leaving you swimming in insulin!

You need to explore your basal first, with Fast testing to see what's happening, this can also identify if you suffer Dawn Phon, which might mean that splitting background into an AM&PM injections works a lot better... Or perhaps an insulin pump is the best option (as in my case).

Then you can work on your carb/insulin ratio's from this point.

The other thing that hampers most diabetics, is they don't understand the reactions that either various types or combination of fat/protein/carbs have.. Such as high fats slows down adsorption so can cause what is called the Pizza Effect, a drop in BG before a rise several hours later etc..

I would suggest that you buy yourself a MDI book,Good one is Using Insulin by John Walsh, it will expand on a lot of information given in DAFNE, show you how to work out many factors for control, how to carry out a good fasting test etc...

As to Bernstein's 'solution' well be warned it is very restrictive more so than a standard LVC/HF diet, is it the solution Well if your control problems is based around Dawn P or an erratic basal profile, that better addressed with an insulin pump no it won't.. I would actually advise googling his website, and taking a look at his forum it give you a good jest to what his regime is about and how others get on with it, and what types of problems they face etc.. Some of his theories aren't too bad if not taken to his extremes.

I actually did try his diet quite a few years ago now, for me it didn't solve the problem but did add a lot more to them, and I found that it couldn't keep pace with how quickly my activity levels changed from one moment to the next!

But perhaps, venture over to the main T1 forum, let us know what sort of problems you having, and perhaps with can give you some information to help you out.

 

[tinyroman]

Hi Snodger
Thanks for the support offer; next time I get mad I'll take you up! I was surprised at the stats you quoted. Next time I see my GP I'll tell him and see what he says. Should be interesting! They also made me feel a bit better as I'm obviously not as useless as I thought, or at least if I am classed as useless by the NHS then I'm in excellent company with the rest of the 93%! I'll keep looking at this forum - there's some good stuff here, and it's good to know I can vent if I need to without being classed as a 'whinger' or being told to 'just get on with it'.

 

[tinyroman]

TR
If controll seems difficult, I would suggest you try reading Dr. Richard Bernstein's "Dr. Bernstein's Diabetes Solution" It may give you some help and since it's written by a lifelong T1 diabetic, at least you know he understands. You may need to ask your library to get it for you. Even if it doesn't solve all your difficulties, it may give you some helpful ideas
Hana
PS you've nothing to feel guilty for, I suspect you've not done anything wrong.

Hi Hanadr
I'll definitely ask the library to get a copy and see if it can help. I think I've done nothing actually wrong, unless we count a whole packet of M & Ms when I'm really upset! Thanks for the info, appreciate it!