Worried about girlfriend's lifestyle

[923rlt]

Hi all,

I'm new to this forum, I became a member because my girlfriend has type 1 diabetes and I'm looking into her condition. She is 20 years old and was diagnosed with diabetes at age 7.

Truth is, I'm worried about the way she handles it:

- she uses a pump but she rarely tests her blood, she just guesstimates how much to bolus and usually tries to keep her levels slightly high to avoid hypos
- she doesn't follow a particular diet, sometimes she eats lots of candy
- she doesn't avoid alcohol
- she smokes, though not a lot, a couple of cigarettes a day at the most. She has done so since about age 14.
- she currently doesn't exercise regularly. She gets very tired and at times, she sleeps A LOT.

From the outset, at such a young age, she was diagnosed with nephropathy. She takes enalapril to keep her blood pressure down. Doctors keep a tab on her, she goes in for a checkup every 3 months but obviously doesn't supply them with accurate information on her glucose levels (i.e. she makes them up).

Since we got together I've been reading up on diabetes, and I've become more and more worried about her. I've told her I feel bad about her smoking and she's cut down, but hasn't stopped completely. I don't want her to ruin her kidneys, or her eyes, or develop a heart problem in a couple of years when we still have our whole lives ahead of us.

What do you think, am I overreacting? Are there likely to be complications anytime soon if she's not more careful?

Thanks in advance for your help.

[victorb]

I think it is good that you are concerned and are taking an active role in trying to help. I was diagnosed type 1 when I was about 12. When I was 20 I remember doing a lot of the same things with the exception that I did not smoke and got lots of exercise. However I ate like an ape and drank like fish through college and a year or two after that.

I am 38 now and I pay much more attention to all details about my diabetes. I am not going to claim that being reckless when I was younger helped me in anyway but at the same time I think I started to learn more about what I could and could not do.

Eventually I grew out of it and I will credit my wife for pushing me in the right direction and wanting to take better care of myself. I definitely was not receptive to all of the suggestions and concern at first as I did not think I needed it. As time went by it eventually sank in that the disease will not go away by ignoring it.

[Subby]

There are times that people overreact about diabetes and a diabetic's relationship with their disease. I don't think this is one of them. She is indeed probably headed for trouble if she doesn't tackle this beast better and improve her control.

Now is the time for you to take a deep breath and cosider very carefully what actions, if any, you should take. By that I mean, it's of course not a clear cut case for nagging, demanding, begging, we all know these things might have results at some stage, but they can also be ineffectual and damaging. There maybe there is a better way.

If I were you, I'd try and get to the root of the reasons that people can have such a hard time facing square up to this disease. Understanding fear and denial, both in other people and how it works for her, will likely give keys to unlocking what is, a self destructive attitude if the person knows underneath where it is all heading (and, she will be somewhat aware of that).

The thing is, those keys need to be in her hands, not yours. That's not to say you can't give them to her or help her find them, it's just finding out how to, and how to support her the right ways to help and encourage embracing a healthier life and one with a bright future. Your project, if you want to take it on, will be ways to support her towards getting the motivation herself. I know that's a pretty obvious point to make. But when we get involved with other people we can be easily accused of meddling. One needs to be very sure of actions to be able to assess if, when accusations do occur, it's fair, or just part of the denial process.

As a diabetic who smoked for some years, my take on that with her situation is: be sure to separate the smoking from getting better control. Yes, it's got dreadful consequences, can make control trickier, etc. But the more it's all wrapped up in the "big monster" of diabetes, the more I feel it's likely to seem insurmountable and thrown in the same too hard bucket. I'd pass on the smoking for now. While weighing smoking against diabetes is like weighing Jack the Ripper against Charly Manson, I think things need to be broken down and the right battles picked in the right order. It truly is very hard to quit feeling stressed, and I know that being an out of control diabetic is a huge stress and possibly helping fuel the smoking.

So my reaction is that better control, a healthier relationship with the big D, is the first port of call here. Going back to the weighing process again, hugely out of control diabetes could land kidney failure in a few years. Smoking a few a day is unlikely to do that. If she was to take better control she would feel so much better, it may not happen overnight but normalised BGs can hve a profound effect on everything. it is not inconceivable at all that some of or a lot of her neuropathy would halt or even reverse. From a position of feeling more in control of BGs, feeling healthier, and with a brighter future, motivation to quit will be more likely to be a ball rolling down a hill picking up speed, rather than pushing against a wall.

[ant hill]

Yeah good on ya Subby!! :), A good post. :D
I see that she is in a rutt over the control of the big D and feels fed up. She would find that sleep is a good thing as she don't have much energy at all. The pump is a great step forward!! :D So I would be very happy to have that. ;) What are you like in the kitchen? Are you conferdent in making meals at home as this is not only cheaper but you would know what's in the food.
For myself I am going to introduce fruit in my diet and eat more veggies. The sweets will be a thing that we will need if we have a low and she will be in a sad mood and very week. Get the testing in before a meal and bolus before the meal and she will moan about it. How is she phyisicly? If fat as that is a insulin slowdown as it will take time for it to react. Go easy on her as she can be moody as I do have a short fuse. :(
Can she use a computer? If she can, We would love to hear from her. :D:D

[jmrasmus]

Wow you're a good boyfriend.
No you are not overreacting and atleast you are reading up on things and know what you are talking about.

My boyfriend does the exact same thing, except without the actual reading about diabetes.
Granted i do not smoke, but a lot of those things that you describe your girfriend as doing I do too.

Everyone has a diffrent way of dealing with their diabetes... even if it's not always the conventional way.
I don't always carry my blood sugar monitor around with me, but for the most part i can judge it based on how i physically feel. Which is a big problem for my bf, because he just doesn't understand how i can do that....

However i am not on the pump, and being on the pump i agree that she needs to get better control...
I seen the damage in ICU's of what can happen to an uncontrolled young pump user, and seeing that was one of the biggest reasons for me to control my diabetes. Sometimes a "scare" like that is what is needed to give you the motivation to control it.

Being 20 does not help. What most other 20 year olds are doing you can't do or you have to be more cautious, like with drinking, that it just is not worth it. It can be hard in the middle of everything to just be like "hold that thought i need to go shoot up"
And there is a never ending nag of people who, out of thier concern and love for you, get very very annoying.

I could suggest trying to get her to keep a food diary for a week or so. because sometimes you really just dont realize what you're eating throughout the day unitl you look back at it. It would be a way for her to show herself what she may be doing wrong... just from my own experiance, when someone starts bringing up my eating habits (even if i have not been being good and know it) i get more defensive and angry instead of retrospective and grateful for their concern

[923rlt]

Thanks everyone for your replies and suggestions.

@victorb: It's very helpful to hear from someone who has been in a similar situation as her. I have no idea how immediate the damage is, so I'm glad to hear that you are doing well now at 38. That is comforting to know. I'm 26 myself and I remember feeling like I could handle anything when I was 19/20, I'm confident that she will realize she needs to take better care at some point.

@Subby: Like you say, I just need to find out how to assist her. Seeing her smoke is disturbing to me, now that I know that it's especially bad for her. It's just such a clear-cut image of something unnecessary, especially since she only smokes a couple a day or often none at all. But then at parties, she goes through half a pack. Maybe I've read up on this too much, but I love her so much and my mind just starts racing when she does this, about blood vessels and feet and her kidney condition... I've actually walked out of the bar and gone home because I couldn't deal with it. If that seems excessive, I agree, but that's how I feel. I'd like to say I'll get over it, but I don't know if I can. Indeed, by now this has become my problem more than hers.

I see what you're saying about better control being more important, though. She's been dealing with diabetes for 13 years so I always figure she must know what she's doing. But the fact that she never tests her levels and makes stuff up just to please her doctor kind of woke me up. Also, I suppose not following a particular diet (i.e. eating whatever she wants, whenever she wants) is directly related to her being so tired most of the time. Add to that the fact that she works irregular times, early mornings or late nights, so her sleeping schedule is all over the place. She often needs afternoon naps and sometimes she gets 14 hours of constant sleep - and I'm not talking Sundays. Maybe I should be most concerned about trying to get her into a better daily rhythm as far as food and sleep go...

@ant hill: I'm not big on cooking and neither is she. We don't always eat together but when we do, I never make a point about if it's healthy for her or not. Maybe I should. I know she needs the candy when she's low, that's not what I meant when I said she eats lots of it. ;-) She is slim and she does use her pump right away, but still it's hardly a good diet. Maybe in time I'll show her this thread and what you all said, but for now, like you say, it's probably best to take it easy with her.

@jmrasmus: She does the same thing: she says by now she can judge the amounts of insulin she needs by how she feels. And of course she knows how much to bolus based on what she eats. Occasionally she wakes up at night because she's low, but most of the time I believe her levels are on the high side. She does that intentionally because she had a severe (barely conscious) hypo when she was a kid and she never wants to go through that again.

I hate to nag her and I never have, besides telling her how I feel about her smoking (and the occasional overreaction described above). So I haven't gotten her into defensive mode, and I hope I won't. It's not like she wants to steer clear of the subject, she even gave me a book to read about diabetes when we had been going out for a few weeks. So she wants me to understand her condition; now I just need to understand why she chooses to handle it this way. And how I can help her.

[ant hill]

@ant hill: I'm not big on cooking and neither is she. We don't always eat together but when we do, I never make a point about if it's healthy for her or not.
Yeah that's just fine, In fact she can just about eat anything that you can eat. The difference is what she don't like.
I am not going to turn you into a cordon bleu chef overnight but you do need to know about carberhydrates and count them and look for other foods that don't have as much carbs and I am sure that she want to be slim so it's obvious that to stay a way from fat and to rid of fat is exercise. At the moment she's weak and to get her to eat quality carbs and match that with the right amount of insulin. Oh, Dose she loves to dance? :D as that's great exercise!!! Can you see what I am on about?
Maybe I should. I know she needs the candy when she's low, that's not what I meant when I said she eats lots of it. ;-)
MMMmmm..... This is not good and I would not fight over the jar of sweets. She must know that is the stuff will get her out of trouble when she's low. she needs to look at insulin more and get into great food. :D
She is slim and she does use her pump right away, but still it's hardly a good diet. Maybe in time I'll show her this thread and what you all said, but for now, like you say, it's probably best to take it easy with her.
I would look at some good food to excite her and stem her away from the sweets jar.
She is thin because her BG is whey too high!!! Get her to test more often. She will cry at the highs and moan and match the insulin with the carbs. ;)

[Subby]

923rlt, what you say makes lots of sense through and through. What I sense here is what a lot of diabetics with understandable levels of denial or just plain apathy towards having the blast condition go through: things are not quite focused on, everything can seem a candidate for improvement an change, it's not that they swing to anger or pushing away, but then again they are not quite in the right place. A decision to generally run high to avoid big hypos, is an example of fuzy thinking/justification that diabetics can't afford: yes we need to avoid lows. No, we cannot afford to run high all or most of the time to do so, or the complications you aked about in your first post, are indeed coming sooner than later.

Focus, is required, because everything can affect BGs, and Bgs can affect everything, yet taking on too much is overwhelming, and often part of the reason for the denial (it's all too much). I'm not going specifically back to my point here about only tackling control first, then smoking later: I mean even in tackling control, focus must be made on the right one or two battles, at a rate the diabetic can make changes, see some improvement, and move on to the next challenges.

The reason I'm coming back to this, is that I think you might do really well to keep focusing on what is the important things, in the right order. If this sounds like I'm stating the obvious to you I apologise: the thing is, often people will be focusing on the things that seem logical and make sense, but without other things tackled first or in place, may be the wrong thing. Here's what jumps out for me. Just to give you background, I've been type 1 for 17 years, never rebelled or denied in an obvious and angry way, but sure went through long periods that could be equated to your gf's situation. Just to let you know I really have been similar places and gone through similar processes, to working through denial and reaching a much better place.

What jumps out for me, then, is eactly what seems to jump out for you. So much rests on taking more BG tests and interacting with them. Everything is fumbling in the dark without more data. Things like working on sleeping habits or lifestyle, might be fruitless or useless, without checking BGs and control more, to see at each point what is effective and what is not.

I thought I could feel my BGs and dose accordingly, and guess what: on testing far more, I found out I was wrong half the time, but if you are always high, doses don't really matter anyway. There's a big chance that's a false impression she has, that feelings can be used as an accurate guide.

I thought (and was told by specialists) that my massive tiredness and fatigue issues for years were probably caused by bad lifestyle and other health issues such as CFS: while I do seem to have CFS in the background, 80% of my tiredness was in having abnormal BGs, and not just "shocking" BGs, ones that for others may not cause much tiredness. I discovered this on gaining much better control. High BGs has to be kept in mind as extremely likely to be causing systemic fatigue, and even psychological issues that may manifest as moodiness or depression.

I realise I'm not really getting to any direct advice for you, as someone who wants to help. The hard thing is that motivation really does need to come from her. Yet I am a believer that we can help each other in profound ways. I suppose if at some stage she does want input into what the heck to do about things just to move on out of the mire, your knowledge and influence could be used to good extent, if you understand the situation better yourself. And a part of the situation is: more testing is required, issues need to be weighed carefully, and tackled in the right order to stay manageable and changeable without fuzzy, big concepts to get in the way, and the net result of this must be seeing improvements in BGs and a1c. Although, the road can be long and hard and full of setbacks, so stamina and sticking at it is required along the way. Not just self discipline in some degrees, but also, self kindness, letting the bundle drop, but picking it up again in a few days.

I gather you do know a lot about the dynamics of diabetic control and have an insight into the motivational challenges of having diabetes. So understand I'm not trying to preach in any way here. I put up a post yesterday about what kind of building blocks I see there need to be to be clambering upwards with this kind of puzzle rather than fruitless bashing against the wall or vague floating in the mud. She has been at it for 13 years, and you have obviously picked up a lot: yet looking at it from the point of view of a newly diagnosed, might have some use. You might find one or two ideas on how to focus your efforts or convictions on the way forward, specificity can be very useful. http://www.diabetesforums.com/forum/young-adults-with-diabetes/36704-new-and-slightly-lost.html#post424902