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Encouraging poorer controlled diabetics

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Just a quick thread, first of all on my last couple of threads did have a couple beers but still sort of meant what i was saying. Ok this forum is great for advice etc, but just want to put my opinion. On this forum looking at everyones HBA1cs most seem pretty good, but iam somewhat confused when i go see my specialist the diabetics ive spoken to on the majority are having some sort of complication or high sugars etc. Ok my diabetes at the moment is abit off but il get it back on track slowly but surely, what iam bothered about is everyones sugars on the HBa1c topic seem to be nearly spot on that surely cant be the case for most diabetics?? so my only other theory is people that are having good sugars will post the diabetics that are oorly controlled are somewhat embarressed or disheartened to put there poor control on the forum. For me personally ive been on both sides had great control and not so good. But as for me if iam struggling with diabetes for whatever reason and i see perfect sugars for evryone or a inspirational story diabetes dosent have to stop you doing anything, it has the reverse effect on me and i prob get abit fed up thinking wish mine was like that or i was doing that. To me its like rubbing salt in the wounds. And not asking for all the good storys to stop or good controlled diabetics to speak about there achievements...But id like to see more of a balance and bring more diabetics forward..Thats why i cam on the other night..Because iam trying to take some pressure of other diabetics its not because i dont care about myself, iam just being realistic.. its the way of the world iam 2 things to finish on why is it when you see starving kids or bad things on tele you start to think and try to appreciate how lucky you are, but if you see someone with a huge mansion or alot of money you dream of wanting it. What iam trying to say the more people speak about there life and not just the good stuff it will encourage alot more that trying to scare and pressure the life out of them. And id leave you one more thing before i go onto my daily stuff... The reason i was stating my HBA1c is 10 percent etc is not because i dont care but because people with off sugars would realise there not the only poorly controlled diabetic and they would probably get more encouragement knowing that theres worse controlled than themselfs. Then more diabetics would feel alot less pressure on geting these numbers they keep seeing on the forums and just start making small steps at a time...As they say rome wasnt built in a day :thumbup:
 
When you need advice on something, it is sensible to ask someone who is successful in that area for help.

Likewise, the people on here with good control and low HbA1c's are the best people to ask for advice on how to achieve their figures and get the knowledge needed to control your own levels.

All of us who have done this, have good figures. And we support each other because maintaining control is very difficult day after day, and we need that support, encouragement and the facts about the successful figures to keep us focussed on what is possible.

It is not to discourage those who are struggling. And, as you say, Rome wasnt built in a day. It took me 3 months to start to consistently get my figures down. And the stories of those who are now successfully and consistently low also show that they struggled, and sometime fall off the wagon.
 
There are plenty of "poorer controlled diabetics" on here. Me for example. Like you Danny, Ive been a heavy drinker (Typical binge drinker) Smoker, and eater of whatever the hell I liked - Non tester with HBA1cs ranging from the 6's up to the 13s and 14s in earlier days.

Now Ive suffered a scare - Those scare storys the doctors tell you about which you think - "That wont happen to me - Ive been diabetic for 20 years, and Im fine!" but then, it may just happen.

I come on here for inspiration - ideas, and advice from people who may have been through what ive been through and come out the other end and now achieve better results. Were all here to manage our diabeties as well as possible.

Now you know my story does that make you feel better? No. But if someone on here offered you encouragement like they have done to me, and advice which I have tried and its worked, can that possibly make you feel better? Yes.

Get a grip - Ive read your posts. Your recently married, think of whats at stake. Everytime I think f*+k it, non of this is worth it, I think about what Ive got at home and realise, that it really really is.
 
DannyH you are correct; if you look at the annual diabetic audit figures then they are depressingly poor... something like over 70% of type I's failing to meet the 6.5% recommended target.

As I said the other day I don't think any of us are perfect and most of us type I's have been in the position of having poor control at some point in our lives. Diabetes is a process of learning what works for the individual; I think the collective experience of what has worked for others is priceless when learning to control your own diabetes it certainly was for me.

I do not however conform to the lets not pretend that HbA1c's aren't important group... there is a direct link between HbA1c and complications / mortality.. that link is not even linear.. a person with an HbA1c of 8% has more than 6 times the risk of a person with an HbA1c of 4.5%... an HbA1c of 12% is 16 times the risk.. To make any decision in life one must be informed... just because we don't like what the numbers mean doesn't mean we should ignore them.

Yes its a tough thing to get good control and to an extent its tough to maintain it.. but seeing that other people could manage it gave me the confidence that I could manage it..

Life / diabetes isn't easy... it isn't fair and it isn't nice.. but that doesn't mean it will kill you any slower or that trying to achieve better control isn't worth it.
 
bennyg70 said:
Get a grip - Ive read your posts. Your recently married, think of whats at stake. Everytime I think f*+k it, non of this is worth it, I think about what Ive got at home and realise, that it really really is.

Interestingly I was talking to my DSN the other week about control and she was saying that men typically get control later in life than women.. most women begin to control type I when they want to get pregnant... when they have more than themselves to consider.. most men when they have a family (typically this is a few years later as they tend to be older)...

We all have off days.. and hopefully those days aren't to frequent but whenever I feel like being an idiot I think that I have a partner and daughter to support. I want to see my grandchildren; I want to grow old and appreciate my life achievements.. that is worth more to me than that cheese and onion pasty or piece of cake... or that one time when you don't test or don't correct..
 
Your entitled to your opinion thats fine, ive never said i dont care about my diabetes its just my opinion, i just dont think scare tatics is the best approach, people that are struggling and feel under pressure to get better control dont need added pressure, what people need is good support and encouragement, the main time i get dragged into the diabetes care place is to give me a bollocking about how many times a day i test there too much money...before when i used to know what my body was doing i never used to test at all.. so i put it to them how about a cgm etc all down to cost.. By rights there is technology out there that can vastly improve my situation but whats the point in bringing it out if its not availiable to people who want it or need it. Simple fact is how are newly dignosed or other diabetics spose to take things seriously when specialists gps and chemists etc dont. And these sre not my words its whats been published in here and also my own personal experience. Think some people are missing the point where iam coming from i dont do exactly what i want i care abit but theres a difference between taking care than becoming over obssessed by small fluctuations or an extra carb etc.. my comments are more to encourage diabetics that are having a hard time and know there not alone, like if said ive been on both sides been diabetic 22 years people seem to think i dont care but if i didnt i wouldnt be on the forum in the first place
 
The first requirement for achieving good control, is to WANT to do it. People like me who have done it for years had to stat somewhere. I started by following NHS guidelines and discovered they didn't work. After a trip to the USA in 2003, When I left some of my medication behind, I found low carbing, which , of course, works anywhere. I gradually dropped HbA1c into the 5s and stayed there. I can't get down to the 4s though, without increasing medication, so I settle for 5s.
I monitor regularly and keep those carbs DOWN LOW. I meet loads of diabetics and discuss my strategy. A lot of them simply don't want to be any betterr controlled, especially if their doctor or nurse has told them they are doing OK. If you neither know what normal Blood glucose is, nor have healthcare professionals who know, they you're unlikely to want to improve.
Hana
 
Danny,

You are always going to get people at different sides of the spectrum.

Some are obsessive about their control and will spend inordinate amounts of time making sure that they stay within levels that they are comfortable with and will make sure that nothing passes their lips that could alter their control.

Others may try but do not have the time or desire to spend so much time as their lives will not permit it.

Newly diagnosed have to make up their minds whether their quality of life is more important than incessant worry about every reading they take.

The management of YOUR diabetes is not a competition with others, it is what you decide is best for you and if the odd slip is something that you are happy with then it is not failure and nobody here walks in your shoes.

However people decide is the way forward, the diabetes fairy often decides that she is going to be mischevous and upset your control for no apparent reason.

Whilst most of us agree that good control lessens our risks of complications, there are no hard and fast rules about this as we do not know what the future holds for us. :(
 
[quote="hanahdr]If you neither know what normal Blood glucose is, nor have healthcare professionals who know, they you're unlikely to want to improve.[/quote]

I hear you, hannah. I've lost count of the number of times I've told my dad (58yo, T2) NOT to eat bread, or potatoes, but his Dr. tells him that they're fine, so he continues to do so... :thumbdown:
 
Hello DannyH.
I know and understand what you are meaning.
Sometimes to take control of things - we need to feel more supported
and confident about things.
Am sure you do care but when things can get too much it can be even
harder to keep on the same pathway with things!
I can tell you it certainly isnt an easy walk in the park to coin a phase...
It does take focus, effort, confidence, but we ALL do need support and
encouragement to get there...
You have raised some very 'valid' points and they are factors in peoples
lives as we all have to self manage our diabetes "ourselves"
It can feel quite a lonely walk too - having to self manage alone!
Please 'do' keep asking the questions you feel/need to.
We are here to help,assist,suppport...
No-one will be pressurised into doing what they cant cope with or do...
Whether it be diet/eating plan or daily routine etc...
Best to take things one step at a time, do only what you feel you can cope with.
As if you dont it can overwhelm a person/member.
Diabetes 'IS' an unpredictable condition it 'can' do its own thing without rhyme
or reason explained to us.
Catherines post above is reflective of this and includes some good factors.
We understand and are here for you and other members too who may be feeling similar
to yourself about things.
Hope this helps?
Anna.
 
DannyH said:
Your entitled to your opinion thats fine, ive never said i dont care about my diabetes its just my opinion, i just dont think scare tatics is the best approach, people that are struggling and feel under pressure to get better control dont need added pressure, what people need is good support and encouragement, the main time i get dragged into the diabetes care place is to give me a bollocking about how many times a day i test there too much money...before when i used to know what my body was doing i never used to test at all.. so i put it to them how about a cgm etc all down to cost.. By rights there is technology out there that can vastly improve my situation but whats the point in bringing it out if its not availiable to people who want it or need it. Simple fact is how are newly dignosed or other diabetics spose to take things seriously when specialists gps and chemists etc dont. And these sre not my words its whats been published in here and also my own personal experience. Think some people are missing the point where iam coming from i dont do exactly what i want i care abit but theres a difference between taking care than becoming over obssessed by small fluctuations or an extra carb etc.. my comments are more to encourage diabetics that are having a hard time and know there not alone, like if said ive been on both sides been diabetic 22 years people seem to think i dont care but if i didnt i wouldnt be on the forum in the first place

Again going on a pump or getting a CGM is still a level of commitment on your behalf it doesn't just sort everything our for you. Frankly how can you ask the NHS to justify spending £1,000's on equipment for you if you can't demonstrate a level of commitment to save your own life?

If you want help then we are more than happy to assist.. yes its daunting but I do not see why we should promote a stance of mediocrity to give people a false sense of security. That may make you feel bad.. I can tell you having your leg amputated or losing your sight like others here have will make you feel much worse.
 
Some really interesting thoughts/opinions and experiences on this thread.

I for one am in the middle, after struggling for years to sort my sugars out - shock tactics where the one that kicked me into gear.

Diabetes is hard work and only us 'diabetics' know that. I do find that no matter how hard I try the body is just not willing but I never give up because I will not let it control me.

After seeking a lot of advice I've adopted a more mixed approach to controlling my sugars. For example I try to low carb if possible but if I do go over or have a little indulgence I won't stress about it, I will give the extra insulin after carb counting and just make sure I hit the gym either later in the day or the next day.

My HBA1c has always fluctuated between 7-8% (I think once I got 6.5% and have no idea how I did it). I understand where your coming from DannyH as when I first started out my HBA1c was about 10% for years but like hanadr said I also believe you have to want to really get control of your sugars. but also as catherinecherub says the body doesn't always want to play and it really isn't a competition with others it's what your happy with in yourself.
 
I also agree with everything Catherinecherub has posted............ It's all very wel trying to achieve excellent bg levels all day long with the hope that they will never develop nerve damage but sadly most people will also find that they start to suffer from some degree of hypo awareness problem where people will only pick up on the hypo symptoms when their bg level falls to between 2mmol - 3.5mmol. Ideally, there's nothing wrong as long as the hypo is recognised and dealt with, but some dont recognise the signs and just collapse. Just lately many consultants are now taking the view that anyone with an hba1c of 6.5% and lower are in danger of eventually losing all of their awareness, start to suffer from memory problems..... I've now spoken with diabetes consultants from two different hospitals and they all think that ultra tight control also means hypos on a daily basis ... and yes I also think they are correct but that's probably because of the amount of years that Ive been insulin dependant. I'm happy with an a1c somewhere between 6.8 - 7.1% as that also means that I am able to recognise the hypo feeling with bg levels between 3.5-4.0mmol which is what consultants want to see. I also have some 'me time' even with a pump as could end up worshipping diabetes all day long if I didn't. It's all about getting a happy medium and giving diabetes 50% of your time but not too much more...
 
I agree it's about finding what balance works best for you.. it's about weighing up risk vs. reward.

I would disagree reference tight control however.. if you can successfully run tight control it does not mean you are hypo'ing all over the place.. I probably have a reading sub 3.5 mmol/l once every six months and haven't had a sub 3 mmol/l reading in five years.. good control means frequent testing.. this means you pick up on hypo's before they happen you can spot the trends see that somethings wrong and make an adjustment before it becomes an issue.
 
The comment about a cgm or pump etc i understand it would not automatically help my diabtes it would take alot of commitment on my behalf, ive researched the costs but iam concerned about the general attitudes yes it does cost alot but my famous point is it also costs the government on average 36k a year to keep a prisoner inside when they commit crime. Ive heard storys about restrictions on tests strips etc..if ive tried it and it didnt work then fair enough. I left my job due to feeling awful alot and that was a few years back, another problem i have is because at the minute alot of my tests are coming back good apart from sugars i feel sort of left on the side lines, if i went bad and starting usung up there resources etc going in hospital etc regular then maybe people would consider pulling there fingers out.. What i mean by that is once you start to become a cost to the NHS they they will bend of backwards to sort things out for you but by that time things may be to late. Iam not saying its there responsibility to sort me out or other bad diabetics but if we are geting better information from this forum than proffessionals then something is failing somewhere big time. Some of the health care team can be good but its so hit and miss its unreal... its like when you go to the doctors people say yea hes ok or he/shes not that good.. at the end of the day they should be all at the same standard or get out the job. And as for my diabetes and trying to get it sorted ive got a few options etc basal bolus know how to carb count etc but ive realised alot of it is confidence and knowing what your sugars are what to eat etc.. I get one box allowance for a week which for most is more than fair enough but as i do want to sort things i actually buy a box here and there which is 20 quid a box and i dont even work. But as before i can do my share but if i want better control test my sugars more often to get a better understanding on whats going on should i be at the chemist every week geting my perscription which my partner has to take me and so i dont panick when running low i buy a box to make me feel more comfortable, and yet i know diabetics that do not really test at all and can get as many as they like. thanks for reading and the most important thing iam learning over the last so many months knowing your own body and how it works is one of the best pieces of information you can have
 
The motivation for me is not scare tactics, really.

My motivation is simple: Pre-diagnosis I had a year of being unable to walk for completely unrelated reasons (tumours). I then had a bit of a break where things were improving, then diabetes hit me, ketones and all and I was unwell again. Fussed, sick, tired, the works.

When I was then put on insulin, I felt most of that go away over a shorter period of time - weeks. I have been fairly quick at picking up most about my diabetes and take control and have my own opinions and my battles with nurses and docs as I think a lot of us have.

My motivation is mostly positive, really. When I keep an eye on things, I can walk long walks, enjoy nature, feel calm and refreshed after sleep, my moods are fairly stable - not grumpy so much etc. My rewards are in the here-and-now.

In the back of my head there is also a desire to keep it this way for as long as I can - active, content, not missing out on life - including the occasional decision to 'have a day off'. I will eat a few things that maybe some people on here wouldn't, I will have my blood sugars spike a bit more than they should, but I will inject, keep an eye on it, and get back on track the next day.

My hba1c was 6.3 last time, that's not exceedingly brilliant. My own measured averages are 6.0 which looks a bit better, and I test often (8+ times a day, I'm a loon, I know). Don't know why the difference, to be honest. But this is a level where both I can do things I enjoy, eat things I enjoy, and I guess I spend 15-20 minutes a day on this. I would not think many other things I could spend 15 minutes a day doing would give me this many immediate benefits. It's just second nature now 6 months after diagnosis.

For me, I am not sure a 10-20-30 year perspective would do the trick either - but the joy of an autumn forest and a day without headaches and feeling off colour definately does it for me.
 
Stressful events send my sugars high.... how can a human person
who is caring, ignore events around them?
After having suffered cancer, in 2004... still around after wonderful treatment,
suddenly along comes shingles... the pain was terrible.. got that cleared
up, here come the burglars, family problems.. etc.
now I have reoccurance of shingles pain in my leg.. no rash...
waiting for it to vanish. I like fruit, but too much sends my sugar higher,
so I take a little more insulin. how much fruit is recommended?
We all need advice, after 30 odd years of diabeties, I still am learning.
help please... Teddybear
 
Hi All.
I too dont like or agree with scare tactics as it can feel like a bullied threat :x
It is wrong to use this way or style of using a scarey thing to try and force another
person to do what they may be finding too hard or impossible to do...
Lots of support and encouragement is much more positive a way to inspire others ! :thumbup:
We do hear of the shocking risks and disableing facts of the worst that diabetes can do to the human body.
But to use this in posts as an "or else" you "will get" or "end up" with etc....
Is wrong!!!! No-one has the crystal ball to predict that this WILL happen to a member.
Diabetes never sleeps - it is up to its tricks and mischief 24-7 ...
All we can do is our level best to control our 'own' blood sugar levels well.
Without fear or intimidation, but to DO have a healthy sense of respect for it's existence
in our lives.
When we respect - we can deal with things far more effectively. :thumbup:
Anna.
 
Danny,

The ethos of the forum has always been to encourage and support one-another during our journey with diabetes, people who have gained good control have had to work hard to achieve it and it doesn't just come to you overnight, not everyone posts their Hba1c's on the forum so you may be mistaken in thinking we all have tight control, most of us have our own goals and strive to achieve it to the best of our ability.
 
noblehead said:
Danny,

The ethos of the forum has always been to encourage and support one-another during our journey with diabetes, people who have gained good control have had to work hard to achieve it and it doesn't just come to you overnight, not everyone posts their Hba1c's on the forum so you may be mistaken in thinking we all have tight control, most of us have our own goals and strive to achieve it to the best of our ability.

Hi All.
I like this post from nigel it is so relevant to the ethos of the forum.
What our help and support is all about ...
To inspire , help, encourage , fabulous tools to use/apply with the community here! :thumbup:
As we have to self manage our diabetes as individuals and it isnt always easy
for every'one' person to do this alone.
We 'ALL' need a helping, supporting hand from time to time...
Anna.
 
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