Please can we stop the judgements

[REDLAN]

I'm afraid that some may find this post challenging.

but I feel I have to answer the posts that go my friend/father/mother has died of diabetes and didn't look after themselves, please make sure you look after yourself.

I can only imagine what it must be like to lose someone to a debilitating illness, and how difficult it is to come to terms with those feelings, especially when we see them not looking after themselves.

This is followed by several posts about how they must have been in denial of their diabetes.

I can't answer whether these people were in denial, I don't know them well enough, but I do know why I didn't take care of my diabetes for 20+ years, and why I've decided to take care of my diabetes now. I have seen it from both sides.

I was never, never, never and I repeat never in denial about my diabetes - I knew I had diabetes, I knew what I was supposed to do, I knew that there was a risk of complications - I'd had the lectures - if you don't behave yourself and live like a monk your feet will drop off, you'll go blind etc. etc. When I was diagnosed the care regime was strict and inflexible - and I did it for about 3 years.

And I asked myself did I want a life of restrictions, don't drink, don't have cake, fingerprick tests that left bruises and scars on your fingers, and maybe a few extra years tacked on the end. I hated that life - it wasn't a life at all in my view - a few extra years of being miserable wasn't a price worth paying - least not when I was 19 and at university.

So I vowed that diabetes came second - at no point would I say "I can't I'm a diabetic" - and so I didn't - I tested when I felt like it, ate what I wanted, and drank and did whatever I wanted. And started smoking as well.

I knew there was likely to be a price to be paid, but in my book this was a price well worth paying.

regrets about that life?

Not a single one - even if it does mean losing a few years (actually I have no idea how you would even know how many years you'd lose)

So I got to 39, and my poor control started to catch up with me - I was feeling tired alot of the time, I got thrush and athletes foot, and had quite alot of time off sick. All those years I ran an A1c of around 10.5.

That was when I decided to start actually controlling my diabetes, not because I'd accepted I had diabetes, but because I wanted to have energy and feel well.

Having done the control stuff I know what it's like from the other side, and I can tell you not bothering is a **** of lot easier and less stressful.

There is always a price to be paid - I have much much better health and energy, but I also get

bad moods, bouts of obsessional behaviour, relationship difficulties with my wife, and it gets me down at times.

I filled out a coping with diabetes form - the same as 6 months ago - and I've marked as a minor problem things like "feeling burned out by the constant effort needed to manage diabetes"
which weren't a problem 6 months ago.

In short there is an emotional cost to good control - I've had to sit down and re-evaluate what I do and I've got a better balance now.

I'm still determined that at no time will I ever say "I can't do that I'm a diabetic." - just that I will make sure I test as well.

so here's the question...

If you had my life, what would you choose?

Please, please, can we stop making judgements about people who don't look after themselves. Just because we can't understand someone's choice doesn't mean that it isn't valid. Instead of holding them up as an example, can't we just be sad when they die?

[Dewey]

I'm sorry that you feel you've had a tougher go of it with caring for yourself than not, but I don't consider people expressing their opinions as being "judgmental" (myself included).

Each of us have different views on life, Diabetes, etc., and we're all entitled to those views. I always try to say that this is the Internet, and things will not always sound the same when read by people all over the globe as they're meant when written by the person posting them.

Life experiences have personally contributed to the way I feel about Diabetes. Admittedly, I have a harder time understanding how it would be easier not caring for ourselves, especially because there are worse conditions out there. An example of this is that when I was diagnosed with Diabetes, I was losing my grandfather to Lung Cancer. So, from my point of view, what he had was a he** of a lot worse than anything I was going through....some may not share my opinion, but it's that personal experience that led to my views on Diabetes, etc. Am I saying your views are wrong? No. I'm just saying you have your feelings based on your experiences, and I have mine, and other people have theirs.....and we're all entitled to them. :)

[Penny]

Good job Dewey! I was trying to think of a way to say the same thing. And Redlan, I respect your opinion too, and your right to post it. That's what this forum is for.

[caswellhb]

Goodness!!!! How on earth can you write these things? I am so sorry that you find it easier to live like this.
I have lost two parents to diabetes and one of them died horrifically.
I am a little surprised that you would raise this objection. However, as a psychologist, I accept that you have the right to your opinion.
Everybody deals with diabetes in their own way and I cannot see that your way should be placed above and beyond the ways that other people deal with it.
I hope your way works out, I truly do! I am grateful for other opinions and all the care and support I can get.

Heather.

[DeusXM]

This might not be appropriate, but I don't see how having good control and having a life are mutually exclusive. Much like yourself, I've never said "I can't do that because I have diabetes." I eat what I like, I drink what I like, I essentially do what I like. I have done ever since I was diagnosed.

I've spent all day in bed after spending the last 24 hours drinking whiskey. I've dived the Great Barrier Reef. I ate a 16-inch pizza for a bet. I've eaten doner kebabs and lived to tell the tale. I've stumbled round Amsterdam so stoned I thought the whole world was tilting to the right and if I let go of the table leg we'd all fall off the planet.

Basically, I've done a lot of things that I'm proud of and quite a few that I'm not proud of. Why am I telling you this? Because whilst I'm always aware that I have diabetes, I've never let it stop me from doing anything. The way I see it, as long as I've got glucose tablets in one pocket and insulin in the other, I've got all my bases covered. I'm not saying it's easy. On the other hand, I also don't understand why managing diabetes should be so phenomenally difficult.

The fact that my last A1C was 6.7% and I've a BMI of 22 suggests that reasonable control and general health are not always mutually exclusive of 'living'.

Obviously yes, I am sad when people die of complications relating to diabetes. I look at them and I always worry that one day that might be me. But (and as horrible as this may sound) I actually draw some strength from when people die from complications. Because invariably, they didn't look after themselves. They had A1Cs in the 9s and 10s, or even worse. And because of that, I think 'I can stop this happening; I AM already stopping this from happening'.

I don't know. Maybe I've just been lucky. But having diabetes simply doesn't seem to be that big a deal for me, and I guess I just don't understand why there seems to have to be a choice between 'living' and not treating it, or 'existing' and treating it. Perhaps one day that might happen, but until then I'm not going to worry about it too much.

[MJB]

I think that virtually everyone, diabetic or not, does things that are not in their best health interests.

How many people routinely cruise through the fast food drive thru for a burger, fries and a coke and really believe they are doing what's best for their body?

How many live in LA or a similar city and truly believe that the air they breathe daily is healthful?

Life is about choices, compromises and risks versus rewards. And for all of us those are individual decisions. :cheers:

[caswellhb]

I think it does need to be taken into consideration that the latest Post was about a T2.
I think Redlan's reaction was to this post.
Personally, I wish there had been something like this forum available to my parents. The warnings may have saved their lives!

Heather.

[LancetChick]

I don't think the comments were judgmental as much as they were an expression of "why"? If I had been in your shoes, I wouldn't have let myself go, and neither would I have become a slave to my disease. Neither option was acceptable to me when I was diagnosed 20+ years ago, so I found a way to get both freedom and tight control. And despite the huge efforts I've made to educate myself, I'd call my own diabetes management easy now. That was always my goal, and it never once occurred to me to let myself go. I can't imagine taking pleasure in my garden or my animals if my body were gradually deteriorating with no end in sight, not to mention the horrible feeling of hyperglycemia. I don't believe that any diabetic is condemned to choose between spartanism and death.

[caswellhb]

Well said Lancetchick!

Heather.

[E-NICE]

I lost my mother to the big D 17 year ago. Yes it hurts and make me sad and angry sometimes and she did not take good care of herself. But I also take that as all the more reason to take care of myself to if not avoid her fate at least slow it down as much a possible.

[DeusXM]

Personally, I wish there had been something like this forum available to my parents. The warnings may have saved their lives!

That's true, and this brings up another important point. I've nothing but sympathy for those who've had diabetes for so many years, because the only reason I'm able to live my life the way I want is because we've only had the tools I need for a decade or so. I was so lucky being diagnosed just 9 years ago because I've always had the options of MDI and blood glucose testing.

If you've had diabetes for far longer than that then I totally understand why for many people it was a case of 'what's the point?' They simply didn't have the plethora of options to have their cake and eat it (literally) like I've always had. It's the people who get diagnosed now and seem to think they have to live like a monk for the rest of their life that I don't understand.

[notme]

Absolutely Deus! I was diagnosed in 1986 and I went through many years of "why try". I was put on a diet of carbs and low fat. I was given NPH and REG and got keto sticks and a meter. A very slow unreliable meter.

I also don't believe that people are judging. I think they are saying "there by the grace of God go I" and hope that all they have done to keep control will save them from the same demise.

REDLAN, I know that your must feel a bit ganged up on with your post. Please don't. You bring up many valid points and brought to the table a good debate. The people on this board are here to help. They are generally a kind a thoughtful group with moments of anger and frustration. I doubt anyone meant in any post to be judgemental, just saddened that someone died and hopeful that they have done enough to save themselves.

[caswellhb]

Redlan, we really are not ganging up on you. Just expressing opinions.
We all have different views and different ways of living our lives. Please accept our differences.

Heather.

[Who?]

In short there is an emotional cost to good control -

I don't even know where to begin a response to your post, but I'll just make two points.

1. There sure is "an emotional cost" to a stroke, dialysis two or three times a week, no feet, blindness and so on.

2. You seem to be assuming that any (severe) consequences of your diabetes will be instantly fatal and having "lived a good life" as they say, you will depart and all your cares will be over.

That isn't often the way it works. Many have quite a few years to spend profoundly disabled contemplating their unwise (to use a euphemism) choices of earlier years.

I think I had better shut up now.

[Harold]

To many people it's not a matter of denial, but rather a resentment of diabetes. Having diabetes means you have to do a little more to take care of your health. No, it may not be easy, and nearly impossible for some, but for most it can be placed on a level with oral health and hygiene. In my opinion the Resentment of having diabetes causes the emotional difficulties and everything that leads to.

[sparrow1]

And there's another side to this coin. Not that anyone has done this on this forum, but last night I came under severe criticism for looking after my diabetes. A guest in my house has had D for 20 years, never tests and has an A1C twice a year. He ate everything that was on the table. When I told him that I test 7 times a day, record everything I eat, etc. he said That's obsessive!" Now THAT was judgmental.

[cheryl]

I understand what you were trying to say Redland, sometimes when someone is in sort of denial or not ready the last thing you want to hear is kind of like mean or straight to the point, I am highly sensitive, I am glad i was on my other forum when i was starting on the turning point of my life. If I would of started here I would of been so turned off, but that is the honest to god truth, and just how I feel...it is a little more straight foward a lot here, and way like talking like a strict doctor.....in my opinion,

I think what Red is trying to say tough love does not work with everyone, some but not everyone, if you choose to give advice or support to people then, you need to honestly look at how you do and what type of person this really is. Not everyone can handle the tough love approach.....

I can't i get upset, it makes me cry, and I don't think that anyone is mean that is the way certain people are but not everyone can handle it, and some can it depends on the person.....

Not trying to ruffle feathers not all are tough love.....and tough love is good but not for all especially at the beginning but some are at the beginning....

Cheryl

[andypoo]

I went through the whole gamut of trying to do what other people were doing or at least that's what I thought. No matter what I did "D" was always there,telling me "you can't do that." You're a bad person for eating that cake" "You can't eat this,because you're different then everybody else" "No,No,No! Put that down! don't do this ,don't do that! You're sick!" That was just me telling me. But,I had plenty of others telling me also,that I shouldn't do certain things,because "you have DIABETES" Until, it completely molded and changed me into something other than what I wanted to be. I became afraid of everything,,and felt GUILTY about everything that I did that was not in the realm of "taking care of myself" I was so busy "TAKING CARE OF MYSELF" that I forgot to live life to the fullest,I put up a protective shell around myself,and let "D" run my life. When I did "break out" for a time,I was made to feel ashamed of myself,but through it all I still managed to do some of the things I love, go on float trips down the Current River,go to concerts,partys,going to wineries,and even trying out the wine,even though I managed to do these things, I believe I stifled myself from my fullest potential. I wouldn't change my life for anything,but if I had to tell someone now how to live there life having diabetes, I'd tell "GO FOR IT,BIGTIME! GRAB ALL THE GUSTO YOU CAN!" Don't limit yourself,you can do anything you want and enjoy,just do it,don't let anyone tell you that you can't,never let anyone tell you how to live your life! It's YOUR life,no one else's!

[Dewey]

Not trying to ruffle feathers not all are tough love.....and tough love is good but not for all especially at the beginning but some are at the beginning....

Cheryl
Yes, but I think the biggest thing is interpretation of what people say (or misinterpretation, as the case may be). We can't always tell that someone is just expressing personal experience or if they're giving "tough love," unless they say so in their posts. Likewise, we sometimes don't know what others need when they ask for help, so we just try to help as best we can. I am probably guilty of the "tough love" approach at times, but it's not that I intend it that way.

As said before, it's all subject to interpretation. This place has a lot of lovely people and while we may sometimes disagree or come across "wrong," I truly don't think any of it is intended to be harsh.

[REDLAN]

I intended my post to be a bit controversial, and I hope that I haven't offended anyone - I just wanted to raise some points I obviously felt quite strongly about - I didn't realise quite how much until I wrote it.

and it's OK, I don't feel ganged up on, I was expecting my post to raise some quite strong reactions. It's good that we can have this kind of discussion without losing our cool.

I'd like to take up cheryl's point about "tough love." I wholeheartedly agree that this doesn't work for everybody. In the early days when I first diagnosed, because my control wasn't spot on I got the shock tactic lecture - and it wasn't as though I wasn't trying - for me this was a big turnoff - especially when I was diagnosed the treatment regime was very inflexible - I guess if I had been diagnosed today I would have been more inclined to travel down DeusXM's route.

I would like to directly answer Who?'s points - I have known quite a few people who have subsequently died after an illness, and I have been with a few people when they actually died. From what I have seen, people get old, they get sick, and then they die. I actually assumed that this is what will happen to me - I will get sick, and then I will die. I personally can not understand this notion of trying to live as long as possible - I assume that I will feel the same about getting ill and dying when I'm 55 as when I'm 65 or 75. We could get into a philosophical debate about this, but I don't feel that it would be helpful. I just accept that other people do not feel this way.

the other point which I wanted to challenge was the one about denial. It's also a medical viewpoint - people who don't look after themselves must be in denial. I never ever felt like I was in denial - it was just that I made another choice - for me that choice with my philosophy on death and how I felt about my life at the time was completely rational.

I know that when people made the comments about denial it was not intended in any other way than to show sympathy and be supportive to the poster. For me, however I feel that the use of such a term devalues the choices that I made, and in some way is like saying "you aren't being rational" - I know this isn't what is meant, but this is what it feels like.

Dewey made the point that the posts can be open to misinterpretion - and I'd like to emphasise that I am not in anyway pointing fingers.

On a different tack there are people who don't take care of themselves, that we would very much like to start because we care about what happens to them.

what I'm trying to say is that shock tactics and saying they are in denial may not be the best way to reach them - it did nothing for me in my journey.

[someone]

Because whilst I'm always aware that I have diabetes, I've never let it stop me from doing anything. The way I see it, as long as I've got glucose tablets in one pocket and insulin in the other, I've got all my bases covered. I'm not saying it's easy. On the other hand, I also don't understand why managing diabetes should be so phenomenally difficult.

Couldn't agree more... very well said.

[Who?]

Redlan;

I share your horror of "living forever."

My concern was that you could have a stroke at 45 and live to 55 (for example) and then you would have ten years to reflect on the fact that if, perhaps, if you hadn't been indifferent to caring for your diabetes, your last ten years might have been better. That is what we all want.

Perhaps such a thought will not ever enter your head, I don't know.

I wish you luck and hope you can arrest, if not reverse, whatever damage has occured during your years of lax care.

[REDLAN]

thanx Who?

the thing is I've been incredibly lucky - I have no complications from diabetes after 20+ years of poor control - although I would like to think that it's down to my devil may care attitude - it's nothing more than blind luck really.

I'm living proof that complications aren't just down to A1C's - although that isn't an invitation to neglect oneself mind you.

What's done is done - I don't look back and think if only - and I'm not frightened of what might happen - although the only way to know is to experience it - the chances are that I will feel just the same as the next person.

I was reading a story in the doctors the other day about the woman who pressured the NHS into prescribing a new anti-cancer drug for women with early stages of breast cancer - the drug had been shown to prolong remission. The woman had been diagnosed with a very aggressive form which meant that surviving her cancer was very unlikely. She's now in remission, she knows that the cancer will return, but it has bought her an extra couple of years to be with her foster son. She views herself as being extremely lucky.

I think the lesson this woman gives us is that even in the midst of tragedy people seem to manage to find something positive in the experience, that makes life worth living. I hope that when my time comes I can be like her.

[VinceF]

Quantity does not equal Quality

[Cyborg]

I guess if I had been diagnosed today I would have been more inclined to travel down DeusXM's route.

I think Deus's post hit it right on the head for me.I've accepted diabetes into my lifestyle and have not let it stop me from doing anything. Anger and denial can both lead to bad choices.

[flash]

"Little bit of Soul", by the Music Explosion. Was that 1969 ?

Redlan your logic blows my mind .......

Flash

[LancetChick]

"Little bit of Soul", by the Music Explosion. Was that 1969 ?

Redlan your logic blows my mind .......

Flash

What does that mean?

[jleonard]

More than anything, what I got from the original post, and what I belive, is that there are two diabetic lives for all of us. Pre complication and post complication. Regardless of control, one day complications will appear. And no matter how long you were able to buy time, it won't matter because on that day, life will change forever.

I have had diabetes for 15 years. Only 2 years ago I started having retinopathy, higher BP, etc, Nuropathy, etc. It has totally changed how I see life.


I used to think "I can slide here" and "sneak this there". Not anymore. Emotions are easy to hide when things are going OK and we're proud of a low A1C. But try having that and still having major health problems. We humans like to believe that we are in the drivers seat. Guess again...

[princesslinda]

Please, please, can we stop making judgements about people who don't look after themselves. Just because we can't understand someone's choice doesn't mean that it isn't valid. Instead of holding them up as an example, can't we just be sad when they die?

As one of the "judgemental" posters here on the forum, I feel that telling the story of my mom's journey/struggle with diabetes has merit. Sure, it would be great to tell everyone newly diagnosed and not sure they want to do what needs to be done "don't worry, do what you think best and all will be fine," but that's just not the way it works. I think those of us who have seen the complications of diabetes brought on by lack of good control (whether because of denial or choice, the results are the same) have the responsibility to share their experiences on the off-hand chance that someone out there may be more inspired to take better care of themselves. As a T2, I actually have the choice of ignoring my diabetes and could have several years without problems, but the consequences of my actions will definitely catch up with me...and even though it would be because of my choice, my family would also have to suffer along with me, giving them the right to judge my actions.

I was truly devastated by my mom's death, so sadness doesn't even cover it. Twelve years later, I still miss her daily....But I feel that recounting her situation might help someone else avoid her fate...yes, it's tough love, but i'd rather be scared into taking care of diabetes that to coast on until it's too late...and there is a point when it becomes too late and you can't undo what's happened. result...

Redlan, I understand what you post was about and the point you are making is a valid one. Perhaps tough love is not always the way to go, but most of us need a kick in the pants on occasion to keep us on the straight and narrow.

I'm sorry that you don't agree, but I intend to keep sharing my story in hopes that it will be a reminder or a wake-up call to others....as well as to myself to do what I need to do to have quality and quantity of life...both are important to me.

[GhostRydr]

I've not chimed in till this point, as I'm new to Diabetes, and family members in the past that did have it were during my youth and I wasn't that aware of what was going on, till now.

Everyone has a different persepective, everyone has a different way of dealing with things that happen. For me, it was initial shock, then anger at having Diabetes. That lasted about 2 days. Then I got myself maddog mean, dug in, found this forum, talked with trusted others around me (thanks Shanda) and found I could do this, and make the changes.

From my perspective, and mine only, I see some of the stories here shared, not to be 'tough love' but to not only share the grief of losing a loved one, but to also perhaps say "hey folks, we're more than just pixels upon a screen, I care and here is something that could happen if we aren't mindful".

Of course I could be all wrong, but this is my take away. I do understand that everyone views things differently, and if i'm on or in chat, i'm always willing to lend an ear to listen up at any time.

[rzrbks]

Leave it to an internationally noted Aeronautics expert

Harold
To Analyze


To many people it's not a matter of denial, but rather a resentment of diabetes. Having diabetes means you have to do a little more to take care of your health. No, it may not be easy, and nearly impossible for some, but for most it can be placed on a level with oral health and hygiene. In my opinion the Resentment of having diabetes causes the emotional difficulties and everything that leads to.

and a barely out of college "Wild Child" to get to the heart/meat of the matter

DeusXM

Basically, I've done a lot of things that I'm proud of and quite a few that I'm not proud of. Why am I telling you this? Because whilst I'm always aware that I have diabetes, I've never let it stop me from doing anything. The way I see it, as long as I've got glucose tablets in one pocket and insulin in the other, I've got all my bases covered. I'm not saying it's easy. On the other hand, I also don't understand why managing diabetes should be so phenomenally difficult.

The fact that my last A1C was 6.7% and I've a BMI of 22 suggests that reasonable control and general health are not always mutually exclusive of 'living'.

[Gerald]

I too was, until recently, someone who did not take overt care and control of his diabetes. In 1999 I was diagnosed with type 2 and immediately made some diet changes including switching from real Coke to diet Coke (which is a big deal when you drink 4-6 cans of the stuff a day) and cut back on sweets. Those diet changes stuck but I never measured my blood sugar and while I cut back on chocolate bars and pastries I still had them from time to time and made no changes to my carb intake. In short for the last seven years I basically ignored my diabetes beyond some superficial changes.

Two months ago I got pneumonia which led to DKA. I ended up spending possibly the worst week of my life in a hospital feeling like I got ran over by a truck. When I was admitted I could barely walk and string a coherent sentence together. It took most of the week recovering before I could handle solid food again. Two months later I'm still suffering the after effects with increased muscle stiffness and soreness, twitchy legs and sore feet.

As a result I've resolved to never go through that again. I'm now on five shots of insulin a day and measuring my blood four times a day. At first I thought this was going to have a major impact on my life, but surprisingly it has been no big deal. I added up how much time a day I spend taking care of my diabetes and found it was a grand total of fifteen minutes. Fifteen minutes a day is a no brainer to me, as someone else posted it's about in the same category as good oral hygiene.

At the end of the day, my opinion is that good diabetes control doesn't have to mean a big change in your lifestyle and considering the upside why avoid it? If nothing else, give control a try and you might find it's not as bad as you think.

I know for me I sure wish I had spent those fifteen minutes a day over those seven years as I wouldn't be going through the problems I am now.