Forum Newbie. Diabetes Denial.

Hello, welcome to the site. I know what you mean about diabetes sending you slightly barmy, I was a responsible adult in most areas of my life, held down a job, paid my bills etc but I was in diabetes denial / diabulimia for 17 years! During this time I tested only rarely, ate what i wanted without increasing my insulin and had hba1cs from at best 8.5 to at worst 12.2.

So I know how difficult it can be, particularly as diabetes demands so much effort for what seems like so little reward - just carrying on as you always have been.

That's until the complications set in and in my case sadly I did not sort myself out until I had damage to my eyes. By then it was too late as the damage continues particularly in the first few years following good blood glucose control, and in retinopathy it is well known to sometimes worsen for a short period once you get things under control. I always thought I'd sort myself out if and when it got to that stage not realising that it takes a few years for the good control to kick in so if you already have eye problems starting then it may not be enough time to stop them.

Despite the fact that my control for the last 2 years since getting pregnant has been ok, with my highest hba1c 7.5 and my lowest in the high 5's, I developed advanced high risk proliferative retinopathy earlier this year and suffered a nasty bleed that blocked 70% vision in one eye, I have just had an operation to clear the blood and remove the abnormal vessels which I am hoping will be a success.

All the time I was in diabetes denial I knew on an intellectual level that I was playing a very risky game, but no matter how much I tried to change my behaviour for some reason I just couldn't. I too know that game of underdosing on your meds to control your weight and I did this for years to prevent myself getting massive whilst still eating a fair amount, all of the wrong foods which I found addictive.

At one point I even carried around a picture of a scene as viewed by someone with retinopathy (all blotchy) to try and get myself to take it in, but it still didn't have much of an effect for very long and any time I did try and control my sugars I just found it too difficult on a number of levels - such as having lots of hypos as I hadn't at that point been taught how to match my insulin. Or just wanting to stuff my face with junk food and not being able to resist.

Anyway I don't know what i can say that you haven't already heard. Sadly for some people (like me) it's only when they get complications that they realise its real. I don't know if anything could have got through to me during the 'wilderness years', although this site has been great in helping me come to terms with it all.

I do now test my blood daily and whilst I may still have the odd pig-out I am sure to bolus for it so that my blood sugar does not go up much, although yes this can make you fat I'm at the point now where I'd rather be fat than go blind (or any other complication).
It may not look or feel very good being fat, but it doesn't stop you from doing things in your life like a complication could.

I'm hopeful I've got the retinopathy under control now, but it's still affecting my life as I don't know if I can risk having another baby and I don't know if my visual field has been affected by the laser, in which case I could lose my driving licencse and job.

The best thing I found for coming to terms with diabetes and taking it seriously was seeing how other people on this site managed. Before, it was always the nurses and doctors and family members telling me what to do and I used to think you don't have it so it's easy for you to tell me. But there's nothing like seeing other people with diabetes overcoming the struggles to manage their condition to make you feel inspired to do the same.

As you are only 2 years in you have a good chance of avoiding any complications if you take action now.

Hi samsandi,

Admitting you have an eating disorder is the start. :thumbup:

There is a good source of help here, Diabetics with Eating Disorders.
http://www.dwed.org.uk/About-Us/

Why not contact them and see what help they can offer.

The longer you get away with it the harder it is to change, as it becomes ingrained to think 'well I didn't follow the rules and nothing bad happened so I can continue as before'

To be perfectly honest, you probably will get away with it for a while. It is very rare for any diabetic to get complications in the first five years or so following diagnosis. The highest risk factor for retinopathy is not the Hba1c but the length of time someone has had diabetes. But as there's nothing anyone can do about that, the hba1c and other controllable things, like blood pressure are the ones they focus on.

The problem I found was that I had got away with it for so long that it was nigh on impossible to change without something life shattering happening - in my case pregnancy (my eyes only got really bad after my pregnancy, very common). Suddenly I was faced with the prospect of losing my baby (as it was an unplanned preganncy and I was not well controlled) which was the worst possible thing that could have happened to me at that time,although not planned the baby was very much wanted, and I began to take things very seriously. Also, being pregnant, I did get a lot of help from the medical staff such as being able to see a nurse or dietician whenever I wanted.

so it's easy for you to continue in denial for many years, or what's probably more common, to dip in and out of it and have periods of control and then periods where you don't care again.

All I can say is do not underestimate retinopathy (I have no experience of other complicatons fortunately) it can become very aggressive very quickly (as in my case) and whilst a lot of the time laser can treat it, there can be cases such as mine where it doesn't respond to the laser. Even though I'd had a lot of laser, it was not enough to stop my eye bleeding from the inside. This is as nasty as it sounds, seeing drops of blood seep into your vision, a bit like someone getting a black pen and scrawling over your field of view. What was even nastier was when I went to a and e at the eye hospital and was basically told it wasn't an emergency and that I wouldn't be seen by my consultant for two weeks. By this point I could barely see out of the affected eye, and even if your other eye is ok, the bad eye obscures your vision with both open and it's difficult to go around with one eye shut if you're not used to it. So suddenly I couldn't see properly, couldn't work, couldn't drive etvc and I felt no one was taking it seriously (it is not an emergency to the nhs) and I had to spend a lot of money to get the op done privately as that was the only way I felt confident my eye would be fixed.

It was undoubtedly the worst experience of my life and I'm still a little scarred by it now to be honest - I don't think I will ever quite be the same person as before.

So that's what can happen - but my story will not necessarily stop you doing what you're doing - may make you think about it for a while but it would be easy for you to slip back into denial.

Have you thoughtt about seeing a counseller for help coming to terms with your diabetes and managing it? Some diabetes centres offer this, but due to cutbacks probably not many and if they did there may be a wait. if you really, really want to sort it out could you pay for counselling?

That's what I'd try and do in your situaiton, although I must admit I had counselling a few times and it didn't stop me for good. It's just too darn easy to put diabetes on the back burner. It's a full time job in itself!

But maybe you are in the right place to change now.

The sad thing is, medical professionals don't understand diabulimia, it's like you can't possibly have an eating disorder if you already have diabetes (although it probably makes you more likely to have one as so much of your life is focused on what you can and can't eat).
I remember one doctor being very rude with me as I had a high HBa1c and I made a formal complaint against him. He apologised (he kind of had to!) but said it was because he was so upset seeing me damage my body. I remember at the time thinking 'yeah I'm upset too, I'm not doing this on purpose or because I don't give a **** but I just don't know how to change.'

Sadly he is not uncommon and a lot of medical professionals will presume you just don't care about yourself.

There is no easy answer I'm afraid. As I've got older I've become less dependent on being thin and would settle for being a size 14 now (I'm currently more of a 16).

I guess in practical terms the only things that I've seen work are cutting down on your carbs, and exercising.

Have you tried low carbing? It does lessen the cravings for carby foods and of course you are not injecting as much. But I personally find them only sustainable for a few weeks at a time as the food choices can be quite limited (although others on the low carb forum would probably disagree).

Regards your question re getting off junk food, I'm afraid your only choices really are

Eat the 'naughty' foods and inject extra insulin to cover them (can lead to weight gain as you know) and/or exercise to burn off teh sugar
Don't eat the 'naughty' foods, deny yourself or eat low carb alternatives (still some calories and fat but no need to inject much insulin)
Eat the 'naughty' foods, don't inject insulin, stay thin but get complications in the future

Sometimes I just want to say 'none of the above' to all that, but after getting complications myself I always inject now, so it's just a choice of whether I eat the foods I want and inject, or deny myself those foods.

Tough life isn't it.

I was thinking today about why diabetes is so hard to manage. My other half has a mild stomach problem, if he eats too much acidic food /drink he gets pain in his stomach. He's been advised to avoid certain foods, such as meat and coffee and alcohol, but he still eats these foods. He says that if his stomach starts hurting, then he stops for a while.

This is the problem with diabetes -there is no pain/consequence for many, many years by which time it is too late. Someone on this forum once said that if everyone developed vomiting, or diarrhea or some other nasty every time their blood sugar went above 12, there would be a lot less diabetics with complications about.

I think it is only human nature to focus on the consequences of actions which are immediate. To modify behaviour based on something which may happen a long time in the future, is very difficult for your average human. I think diabetes sometimes expects us to be superhuman.

Whilst I sometimes blame myself for the complications, other times I just think that I didn't stand a chance given that I was diagnosed as a teen, with eating issues. I think most people in those circumstances would struggle at best and fail completely at worst to control their diabetes.

If my partner can't even cut down on certain foods and drinks when they give him a stomach ache then how can your average diabetic cut things out based on some far away possiblity of complications happening? Of course many do though and should be commended for that.

My partner even smokes, not a lot, but it's crept up recently and I said to him I bet if you got lung cancer in 20 years you'd look back at now and think you'd been a silly b*gger.

He admitted he would, but it's still not enough to stop him doing it he was outside having another fag not long ago.