Is the forum always supportive or can it sometimes seem a little oppressive?

[tim2000s]

Now this may be a controversial topic but... hang with me.

As a T1 of 2/3rds of my life, I am fully aware of the inevitable ups and downs of glucose levels in response to foods, insulin, stress, etc. I have days where I get a great straight line and days where it's a roller coaster. My diet is fairly consistent and pretty clearly laid out, and yet, I still sometimes struggle with keeping everything aligned. Varying responses to protein shakes, basals, etc in response to exercise and all sorts. And this week hasn't been the best of weeks in terms of managing to keep a coastal railway as opposed to a rollercoaster, has been reasonably stressful, and so is influencing my thinking somewhat in this post!

Don't get me wrong, I understand why it happens, and I'm managing to achieve decent Hba1C levels, but sometimes, the relentless striving for "normal" glucose levels feels oppressive. Whilst controlling in a reasonable range is relatively straightforward and I tend to find myself "sugar surfing" a lot as a mechanism of control, sometimes I look back at the past where there was less testing and I was still achieving a half decent Hba1C level with rose tinted glasses.

What I find myself wondering is whether the forum tends towards encouraging people to strive for something that, whilst not impossible to achieve, requires a large amount of work to achieve, and potentially can feel almost oppressive about it. We consistently suggest that heading into "normal" territory is a good thing because it reduces complications. But so does running an average of 6.5 instead of 8.5 mmol/l.

Given the amount of life there is to get on with, do we as a forum encourage and perhaps proselytize towards something that is more demanding and short sighted (and potentially oppressive) than our diabetic consultants attempt to? Do they take into account something about the human psyche that we don't? What are your thoughts?

 

[Robinredbreast]

Type 1 is a hard slog at times. But we can only do our best, you only have to look at some of the threads posted by younger members to see how devastating it can be.
The last 3 years, I have found through extreme worry, stress and illnesses have taken it's toll on my body, but the harder I'm hit the more I will be fight back with all my might to get to the 'normal place' in terms of my mind and my diabetes.
On the whole, the forum is very supportive and a caring one and my last BS reading of 7 in November was acceptable because of recent occurrences which were way out of my control, I wish it was a 6, but a 7 was a surprise which lifted my spirits a little.
Always strive to do the best you can. My life and events, especially in the past 3 years has been a huge roller coaster ride, but I do prefer the Merry go round

Give up, give in or give everything

Best wishes RRB

 

[catherinecherub]

I don't know if you have read this article by a Type1 diabetic?

He relays his his thoughts on why he does not strive for perfection when he answers a question from a diabetic . (He is a Diabetes Educator).

http://www.healthline.com/diabetesmine/ask-dmine-how-low-carb-is-low-enough#1

 

[Mike d]

Good question ..... but for me. I'd rather aim high and not get anywhere near it than accept something I know where I've accepted less.

We fail, we regret, we grieve, we remember ...... we should always remedy, correct, accept and remember as well.

 

[yingtong]

After being diabetic type1 for over 52 years,my outlook is I rule my diabetes,it does not rule me.

 

[tim2000s]

That's a great, and very interesting article thanks Catherine. It reflects a lot of what I think of and feel about Bernstein and the Bernstein approach to dealing with diabetes. There's more to life. It's good to see a more balanced viewpoint being articulated.

What I find equally interesting is that we don't speak more to this style of diabetes management when we see new T1s on board. There seems to be a tendency to jump onto the Low Carb/Bernstein rocks view as the way to live a diabetic life (and I've been just as guilty) when the reality is that you have to try and live a life, and an extremist one (in any form) pushes out a lot of other things. If it works for you, that's great, but I think there is more to life than trying to live till I'm 90.

Once again, thanks for that!

 

[tim2000s]

@Mike D, there is nothing wrong with that approach. The point I'd make is that as a T1, managing glucose levels within the tight tolerances that are being advocated is far more of a challenge than as a type 2 doing it by diet alone. I'm not denigrating the difficulties of the sustaining the diet, but it is not the only thing you have to manage when you are without your own insulin.

 

[millysue]

Hi Tim,
I only found this site about 3 weeks ago, so, should I or shouldn't I put my tuppence worth in.

I think we all feel at times, stop this bloody ride I want to get off. But then reality kicks you up the butt..

I have been type 2 and on tablets for about five plus years, age 64, so why am I bothering now.
Good question. My feet are keeping me awake at night, is it too late, I don't know the answer yet.

But what I do know is, I have gained lots of help and support from this site, they are giving me the strength to try and change things.
This site is not all doom and gloom. That reminds me Adrian ! I didn't get my Valentine's card.

Sorry must go and track Adrian down.

Godd luck.

 

[LucySW]

That's a great, and very interesting article thanks Catherine. It reflects a lot of what I think of and feel about Bernstein and the Bernstein approach to dealing with diabetes. There's more to life. It's good to see a more balanced viewpoint being articulated.

What I find equally interesting is that we don't speak more to this style of diabetes management when we see new T1s on board. There seems to be a tendency to jump onto the Low Carb/Bernstein rocks view as the way to live a diabetic life (and I've been just as guilty) when the reality is that you have to try and live a life, and an extremist one (in any form) pushes out a lot of other things. If it works for you, that's great, but I think there is more to life than trying to live till I'm 90.

Once again, thanks for that!

Tim,

One of the things we are most greatly in need of as diabetics is real information about how our disease works: what the mechanisms are, what makes insulin work better, what changes the equilibrium in our metabolisms. We really need that. We don't get it from our carers. Without that information, we have no chance of staying well. You must forgive those of us who get excited when we begin to see the contours of our disease a bit more clearly. It's intoxicating - and it offers the hope that we can get a handle on things.

A second need we face is to make decisions, usually frequently revisited and revised decisions, about where we want to go from where we are now. That's much harder. We all know that if we aim too high we will feel bad, and we know it won't help. As I've complained elsewhere, feeling like Bad Diabetics or Good Diabetics is getting on a rollercoaster and will damage our decision-making as well. It's something we have to remind ourselves not to do. That's one aspect of how being diabetic is so much more difficult than anyone who isn't one will ever understand.

We negotiate that second thing individually, on our own. It's the responsibility of each one of us alone.

I, too, get a bit irritated when people think Bernstein is God, because it's simple-minded. Bernstein has his oddities - he tells people to eat liquidised food, for heaven's sake. His basic idea of small numbers, though, is irrefutable, and carbohydrate is documented to have certain determinate effects on the metabolism. That's beyond doubting now. It is important for everyone to know that the low-carb/low-insulin-dose approach is out there.

I don't think, though, that the forum need shoulder responsibility for our individual decisions.

Lucy

Technical point: For anyone who wants these questions about carbohydrate, high and low, laid to rest once and for all, this is the book they want. It's written by two researchers who've been working on low-carb and the metabolism for twenty years, and it's not populist. It presents the science in detail.

 

[Daffodils1]

Hi Lucy, thanks for that link, looks v interesting read.

 

[Scardoc]

Now this may be a controversial topic but... hang with me.

As a T1 of 2/3rds of my life, I am fully aware of the inevitable ups and downs of glucose levels in response to foods, insulin, stress, etc. I have days where I get a great straight line and days where it's a roller coaster. My diet is fairly consistent and pretty clearly laid out, and yet, I still sometimes struggle with keeping everything aligned. Varying responses to protein shakes, basals, etc in response to exercise and all sorts. And this week hasn't been the best of weeks in terms of managing to keep a coastal railway as opposed to a rollercoaster, has been reasonably stressful, and so is influencing my thinking somewhat in this post!

Don't get me wrong, I understand why it happens, and I'm managing to achieve decent Hba1C levels, but sometimes, the relentless striving for "normal" glucose levels feels oppressive. Whilst controlling in a reasonable range is relatively straightforward and I tend to find myself "sugar surfing" a lot as a mechanism of control, sometimes I look back at the past where there was less testing and I was still achieving a half decent Hba1C level with rose tinted glasses.

What I find myself wondering is whether the forum tends towards encouraging people to strive for something that, whilst not impossible to achieve, requires a large amount of work to achieve, and potentially can feel almost oppressive about it. We consistently suggest that heading into "normal" territory is a good thing because it reduces complications. But so does running an average of 6.5 instead of 8.5 mmol/l.

Given the amount of life there is to get on with, do we as a forum encourage and perhaps proselytize towards something that is more demanding and short sighted (and potentially oppressive) than our diabetic consultants attempt to? Do they take into account something about the human psyche that we don't? What are your thoughts?

I don't think the forum pushes towards this. There are some members who certainly do and there are plenty of previous threads on the subject but in general, from what I have seen here over the years, there is a real mixture of targets.

What I always remind myself is that "normal" no longer exists in my pancreatic world and that for some, the struggle of actually hitting the recommended target, is far greater than anything I have yet to experience.

 

[tim2000s]

@LucySW , I don't disagree with the science. Even from an anecdotal perspective, I was aware of it. I think we have a tendency as a forum to push for the low carb approach, in some cases to the exclusion of other approaches that people use and find works. And for the record, the law of small numbers is fabulous, except, like all good laws, it has a fair number of exceptions.

With regard to the "Good Diabetic" or "Bad Diabetic". We all know when we are being one or the other. It's one of the things that is intrinsic in carb counting and managing glucose levels. The "I'll just have a piece of chocolate cake and bolus for it" approach, which we know isn't a wise decision, but we do it anyway.

Maybe I'm just having a grumpy week, and I get that the "Eatwell" plat doesn't encourage eating well, but I think that sometimes we don't temper our knowledge of our illness, or search for additional knowledge with the base fact that other approaches have successfully worked for many people, and we don't need to assume that the right answer for everyone is the low carb/law of small numbers route.

@Scardoc I'd say that normal is as normal does.... We each may have our own normal!

 

[LucySW]

Maybe I'm just having a grumpy week, and I get that the "Eatwell" plat doesn't encourage eating well, but I think that sometimes we don't temper our knowledge of our illness, or search for additional knowledge with the base fact that other approaches have successfully worked for many people, and we don't need to assume that the right answer for everyone is the low carb/law of small numbers route.

I think assuming is the problem, Tim. We do too much of it! We are all face to face with our particular bodies, and we should work out what we want to do in the face of that.

About Good Diabetics and Bad Diabetics, I meant something slightly different, viz., that actually there isn't any such thing. The labelling itself makes us feel bad. We're only a little bit responsible for the outcomes we get. Mostly it's luck. We should perhaps lower our expectations - if not our hopes.

 

[noblehead]

It's important for people to set their own goals when it comes to controlling their diabetes and try and achieve them as far as possible, but you should never beat yourself up when you don't achieve them as there are so many factors that can effect bg control in type 1 diabetes, rather than look over your shoulder to see what the next person is doing concentrate on your own management and don't let diabetes dominate your life, after all life is for living.

As for Dr Bernstein, you can't but admire someone who has lived with diabetes for so long and has no or little complications, but his bg targets are unrealistic for most people and the targets he sets himself are so low that non-diabetics don't even achieve them, but tbh I don't see many members on here pushing the Bernstein style diet on new type 1's who join the forum and if anything most people just find their own way after taking in board the advice to reduce the carbs in their diet.

The forum has and continues to be a great supportive community to those with diabetes and their families, long may this continue..............

 

[smidge]

No-one should feel oppressed. All we have to do is decide what level of risk we are happy to live with and aim at a level that gives roughly that level of risk. Obviously we need information and knowledge to make sure we are making decisions on a sound basis. The forum helps us get that information and knowledge by exposing us to many different approaches to diabetes management and to people's experience of following them. The decisions are ours alone.

Personally, I would prefer to have normal blood sugars as that is the risk I am happy to live with. I can't achieve that, so I aim for as near as I can. I am not deluded enough to believe there is no difference of risk between what I can achieve and normal blood sugars, and I will always strive for better, but I'm comfortable that I am doing my best.

Although I've also had a very bad blood sugar week too @tim2000s !

Smidge

 

[Robinredbreast]

@Mike D, there is nothing wrong with that approach. The point I'd make is that as a T1, managing glucose levels within the tight tolerances that are being advocated is far more of a challenge than as a type 2 doing it by diet alone. I'm not denigrating the difficulties of the sustaining the diet, but it is not the only thing you have to manage when you are without your own insulin.

You only have to see how some of the younger members with type 1 find it so difficult to accept, manage and control their condition.
It's a tsunami slap in the face, which knocks them sideways and it can be so difficult to get back up. I am not talking about depression,( but the dreaded 'D' ) but the long rocky road ahead which never seems to get any smoother. And even hiding it away or ignoring it, could, in time, be an even bigger struggle to get those targeted blood glucose results that is good for them, me or the many thousands of other type 1's out there.
We can all aim for the bullseye on a dart board, but how many, realistically, will ever get close enough even to hit it's outer metal ring ?
Best wishes and regards to all

RRB

 

[CollieBoy]

My Grandfather always said:

"Good, Better, Best,
Never let it rest,
'Til your good be Better,
And your Better, Best!!"

Therefore I strive towards the ultimate, though not expecting it, but striving towards it.

 

[Diamattic]

Of course we do. But isn't that the point ?

I understand what your saying, as its easier to lead an otherwise 'normal' life if you shoot for 7s on every reading. When you aim for 5s all around your're putting yourself under pressure that can both be beneficial and 'oppressive' as in your post.

I don't want to put anyone down, but shooting for the stars isn't for everyone. Just like we all around astronauts or rocket scientists. Some people would rather just focus on the rest of their life the diabetes, and telling those people they need to constantly be checking and aiming for 5s or their doing it wrong is not healthy for them mentally. However, some of us are keeners, people who can and like to push themselves, so shooting for 5s is seen as a welcomed challenged instead of an insurmountable obstacle.

I have found that Internet forums are almost bi-polar. They are made up of people who are very negative and come online to vent, and complain, and share frustrations they can't in real life, OR they are very positive and come online to share their experiences and knowledge, with the intent to learn and better themselves and the community. In many cases the online community tends to be both, depending on their mood (on day very upbeat, the next very negative lol)

If we were all happy with the care our doctors were providing there would be no reason to be online, however, it seems we want more.

'more' means many things to many people, and not everyone can handle a bunch of people telling them they need to do better, everyday for the rest of their lives, when everyone around can do whatever they want. It very hard, and i believe it does take a certain type of person to be able to handle this pressure. Again, it is not for everyone, as like you seem to have noticed it can seem oppressive to some.

I like to take the approach - Do what you can.

It seems very basic, and simple, but has a deeper meaning those who 'aim to always push themselves'. Those people who don't want to be shooting for the stars it simple means what it says, and they tend not to think twice. For others (myself included) i always see it as "Is this actually all i CAN do?" and it gets me thinking about if I can do better, why can't i do better?, have I really found my limit? the list goes on.

The point is - People drive themselves, and someone doesn't have much drive, forcing them to keep going will only break them. Some people have seemingly unlimited drive and those are the people who should be pushed. Its not the internet job to differentiate the two, so it turns out being a bi-polar harsh environment lol

 

[Emmotha]

It's funny, I realised something today.

I got home, to a hand written letter in the post. From my gran. She asked if I was ok and she hopes to see me soon.
I realised, I've been so focused on my blood sugar and getting it all right, I've totally neglected my friends, family and happiness.

Not sure if that's cuz I'm only 8 months in or what, but I just seriously need to chill out about it all.

I don't blame the forum though. I don't ever read any posts as "ah look how awesome I am and ur control should be better" type of thing. Ppl support others from all kinds of circumstances and I always feel I can come here whether I'm having a good or bad day

 

[Andy_D85]

I think some of the advice can come across that way, I'm sure the posters don't mean it to and work from places of good intentions though, it just reads that way across t'interweb to my eyes/brain.

As an example, a post I was reading the other day had a girl asking about pasta (I think it was pasta anyway, it was definitely about something to do with a food with high carb values!) And she stated in her post 'I know pasta is a no-no'. Which I found really really sad. That's not advice she would have gotten from a diabetes doctor or clinic. I've yet to meet a professional diabetic carer (nurse/doc/A.N.Other) who advises you CANNOT eat carbs...according to them nothing should be a 'no-no'. Which means that attitude towards pasta has come from here, or people offering advice similar to a lot of what gets posted on here.

There are most certainly foods it's more sensible to eat, and foods that aren't that smart. The amount of times I've seen 'LCHF' written since coming on to this forum properly a few weeks ago also concerns me. It is great if that diet is working for you, or COULD work for me/anyone else...but what matters is choice. I could choose to eat LCHF, but instead I choose to eat a very high-carb based diet frankly, because I enjoy the foods. Not so much the sweet parts, but the savoury, bread, pasta, pizza, potatoes, yogurts, cereals, biscuits etc...all these things are staple parts of 'my diet' ..in part because without it I would weigh close to 5/6st with my current complications - I need the weight eating lots of heavy, high-carb foods give me at this stage! I've avoided commenting on what I eat up until now as upon arriving in the forum a few weeks ago and reading the posts, I felt immediately like I would be lectured/shunned/burned at the stake for 'refusing to kow-tow' to what I call the 'cult of LCHF'

I'm aware it's not a cult - I'm also aware I wouldn't be lynched you're all too nice for that =)...but the other day I politely tried to decline a piece of advice regarding lowering my carb intake on another thread, to be met with 3/4 replies of 'speak to your doctor, but it's worth it'...given the amount of references to the LCHF lifetyle in the persons signature, and as much as I know they were genuinely trying to help me anyway they could...what works for them won't work for me in the same way I feel...and even if it did, and could...would I get any pleasure out of eating the staple parts of a LCHF diet? I've had a look at the 'menu'. And the answer is a definitive no.

From this round of testing extensively, and from the last time I tested and adjusted/bolus'd appropriately on the results, I've proven I can manage my sugars effectively to a level I and my care team are happy with without making sacrifices to the foods I enjoy. My average BG for the last 2 weeks is 6.2...6.2...that's a number I couldn't have dreamed of 4 weeks ago! I eat everything I always did.

Would I advise anyone to follow *MY* diet because it is "working" for me?

No, Definitely not! But if anyone struggling to get the numbers they want to achieve said they were eating the same as me, the last thing I would suggest is changing what they eat...the advice I would give them is the same advice my Nurses and Doc's gave me over the years but that I chose to ignore/didn't 'know' how to follow - if you want to eat whatever you want, you need to test more, and learn how to adjust your doses accurately. If you DON'T want to change your habits with testing and adjusting...THEN you need to look at changing what you're eating, as if you're not seeing the results you want, something needs to change - it's pretty much always going to be one of those 3 options to reduce you BG though =).

I've focused very much on the LCHF/'no carbs' advice that seems to be all the rage at the moment, but this goes for every subject in the entire world, not just diabetes, when we offer advice to people it needs to be as impartial as possible - you present the facts (at least as far as you understand them!) to the other party and let them make up their own mind...the minute we start trying to 'convince' anyone that the option(s) we're presenting are definitely right for them as opposed to them making that choice themselves - we move from 'advisors' to 'influencers' ...and there's a delicate balance between positive and negative influence, and it's especially risky to influence someone when we're not aware of ALL the facts, which we're sadly never going to be on here.


That's my 2p on it all - I suppose I could sum it all up by saying I don't see anyone on here as being 'oppressive'...just sometimes the community is a little 'over-zealous' on certain matters! Lol! =)