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Encouraging poorer controlled diabetics

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I've had 'bad' hba1cs and 'good' hba1cs, difficult times and easy times. I would never post the result here either way because it's private to me.
I think there are several things going on with 'poor control' and motivation. And everything I'm about to say is about T1s coz that's all I know.

1) Some people's diabetes is harder to control than others'. If you are lucky enough to be unaffected by monthly hormone changes, you don't have dawn phenomenon, and stress doesn't make your bg rise (or you have no stress) then you will find it much, much easier to manage than someone who is affected by those things. Doesn't mean you are lazy or 'poorly controlled', it means you are trying your best and it's just harder for you.

2) Some people's lifestyles make it harder to control. If your boss can send you off on an (physical, exercisey) errand at a moment's notice, if you have to do a lot of driving and need to ensure you are safe, if you are looking after kids or other people, it's going to be a lot harder than if you are sitting around on your backside (like me) with no dependents and controlling every single minute of your own day (control's so much easier for me now than when I was running around after an impossible boss).

3) I'm sure there are people on this forum who have fabulous HbA1cs, and I'm really glad for you if you do, but the majority of Type 1s - even motivated, educated Type 1s - are stuck at around 8%. Our bodies are broken, it's not our fault. You all know I'm sure about the DCCT, the huge trial that everyone references when they say 'good control leads to fewer complications'. The 'good control' group were given intensive therapy and tons of support and education all the way through the trial, but even they couldn't get to the targets they were given. Ten years after the trial ended, the educated, motivated 'good control' group's average HbA1c was back to - guess what - 8%. (they started at 8.8% so it was a slight improvement!) I have yet to find a study of T1s that shows hba1cs of under 7.5% being maintained long-term, and IMO that's because it's just not possible for most of us. (If you know of one please let me know).

So, I'm with the posters in this thread who are against the scare tactics. Being told you are controlling your disease 'poorly' and told about the horrible things that will happen to you if you don't shape up is a terrible way to motivate people. Especially if the targets are just out of your reach however hard you try.
 
Agreed. I've only been a member for a week and have learnt a lot more to aid me in my battles. Half of it is knowing that people have similar issues/concerns. I think the support is great, I hope I can give good advice like you guys do at some point.
 
Snodger said:
I've had 'bad' hba1cs and 'good' hba1cs, difficult times and easy times. I would never post the result here either way because it's private to me.
I think there are several things going on with 'poor control' and motivation. And everything I'm about to say is about T1s coz that's all I know.

1) Some people's diabetes is harder to control than others'. If you are lucky enough to be unaffected by monthly hormone changes, you don't have dawn phenomenon, and stress doesn't make your bg rise (or you have no stress) then you will find it much, much easier to manage than someone who is affected by those things. Doesn't mean you are lazy or 'poorly controlled', it means you are trying your best and it's just harder for you.

2) Some people's lifestyles make it harder to control. If your boss can send you off on an (physical, exercisey) errand at a moment's notice, if you have to do a lot of driving and need to ensure you are safe, if you are looking after kids or other people, it's going to be a lot harder than if you are sitting around on your backside (like me) with no dependents and controlling every single minute of your own day (control's so much easier for me now than when I was running around after an impossible boss).

3) I'm sure there are people on this forum who have fabulous HbA1cs, and I'm really glad for you if you do, but the majority of Type 1s - even motivated, educated Type 1s - are stuck at around 8%. Our bodies are broken, it's not our fault. You all know I'm sure about the DCCT, the huge trial that everyone references when they say 'good control leads to fewer complications'. The 'good control' group were given intensive therapy and tons of support and education all the way through the trial, but even they couldn't get to the targets they were given. Ten years after the trial ended, the educated, motivated 'good control' group's average HbA1c was back to - guess what - 8%. (they started at 8.8% so it was a slight improvement!) I have yet to find a study of T1s that shows hba1cs of under 7.5% being maintained long-term, and IMO that's because it's just not possible for most of us. (If you know of one please let me know).

So, I'm with the posters in this thread who are against the scare tactics. Being told you are controlling your disease 'poorly' and told about the horrible things that will happen to you if you don't shape up is a terrible way to motivate people. Especially if the targets are just out of your reach however hard you try.
Click to expand...

So true,

I am type 1 as well, 23 years now and it had been a difficult struggle at times. I agree with you Danny,Snodger and teddy bear. Worry and stress have caused havoc with my BS this year. Things that are out of our control,which could include work, children, illnessess , family, shocks etc can be so hard to deal with and with BS are the very highs, then come the crashing lows and we all know that is not good at all. Try as some people might, they cannot seem to get it right,yes, we all take insulin because our pancreas packed up :( but it can be a long hard slog for alot of people. I try my very best, like alot of you, but sometimes it just doesn't work because that diabetes fairy has been up to her tricks again :roll:

I know of the complications and it does worry me. I just keep striving to do my best and to continue keeping very active and to keep testing. Teddy bear if you need a shoulder,please feel free to pm, as they say 2 heads are better than 1. Take care and best wishes RRB


it can be soul destroying at times and noone wants complications to set in.
 
Snodger said:
I've had 'bad' hba1cs and 'good' hba1cs, difficult times and easy times. I would never post the result here either way because it's private to me.
I think there are several things going on with 'poor control' and motivation. And everything I'm about to say is about T1s coz that's all I know.

1) Some people's diabetes is harder to control than others'. If you are lucky enough to be unaffected by monthly hormone changes, you don't have dawn phenomenon, and stress doesn't make your bg rise (or you have no stress) then you will find it much, much easier to manage than someone who is affected by those things. Doesn't mean you are lazy or 'poorly controlled', it means you are trying your best and it's just harder for you.

2) Some people's lifestyles make it harder to control. If your boss can send you off on an (physical, exercisey) errand at a moment's notice, if you have to do a lot of driving and need to ensure you are safe, if you are looking after kids or other people, it's going to be a lot harder than if you are sitting around on your backside (like me) with no dependents and controlling every single minute of your own day (control's so much easier for me now than when I was running around after an impossible boss).

3) I'm sure there are people on this forum who have fabulous HbA1cs, and I'm really glad for you if you do, but the majority of Type 1s - even motivated, educated Type 1s - are stuck at around 8%. Our bodies are broken, it's not our fault. You all know I'm sure about the DCCT, the huge trial that everyone references when they say 'good control leads to fewer complications'. The 'good control' group were given intensive therapy and tons of support and education all the way through the trial, but even they couldn't get to the targets they were given. Ten years after the trial ended, the educated, motivated 'good control' group's average HbA1c was back to - guess what - 8%. (they started at 8.8% so it was a slight improvement!) I have yet to find a study of T1s that shows hba1cs of under 7.5% being maintained long-term, and IMO that's because it's just not possible for most of us. (If you know of one please let me know).

So, I'm with the posters in this thread who are against the scare tactics. Being told you are controlling your disease 'poorly' and told about the horrible things that will happen to you if you don't shape up is a terrible way to motivate people. Especially if the targets are just out of your reach however hard you try.
Click to expand...

Interesting post snodger... :)
I have wondered if some people/members dont like to disclose their HbA1c's for fear of being judged?
As not trying hard enough to get them within acceptable range.
It is certainly hard enough to do the best that you can and find they still sit above the target accepted ...
Can be sooo frustrating and crushing to the confidence.
Mine play havoc without rhyme or reason.
Am a trougher and peaker and I have to juggle things as tight as I can and dare to...
To keep them as level and consistent as I can.
Luckily am thick skinned but not everyone is likewise!
I understand this and do sympathise with others that worry over this...
Anna.
 
Great post Snodger, very valid for me in fact as I do battle with a lot of stress at work which results me having different basals/ratios in work compared to at home. Life is a juggle at the best of times so adding the diabetes into the mix is obviously going to affect us all in different ways.

I havn't posted my HBA1c just due to personal choice anna29, i'm of the mind that if I get judged about it, at the end of the day i'm happy with how i'm manageing my diabetes - that's what matters really isn't it. I tend to fluctuate a lot between 7-8% anyway so i'd be forever updating it.
 
i Danny,

any chance of breaking your post up in paragraphs?

I haven't really read anything you're typed, but would like to share something. I don't follow NHS dietary advice, or dietary advice found on here.

I've consumed probably 200+g of carbs today, 150g of protein, and around 60g of fat...My average blood sugars post meal (checked two hours later) have been around 5.5mmol. I do have spikes, but I tend to take my Insulin around 20 minutes before I eat and try to pace myself while eating to allow the Insulin to do its job.

I do go to the gym four days a week and do weight lifting, from what I can see my current lifestyle allows me to do whatever I want as long as I shoot enough Insulin.

I wake up with blood sugars of 5-6.5mmol.

My next HBA1c will speak for it self.

In conclusion if you're on Insulin, shoot the adequate amount according to what you eat, exercise and all should be well.
 
Thanks for replys and interest, in a way your keeping me doin what iam doing, right lets kick this one off.. the specialists out there can diagnose alot of things but they cannot predict which diabetic or when complications can occur.. why? they seem to have the results if your HBA1c is above this percent your have x percent geting this complication. Iam saying now its rubbish. yes your sugars according to the bossses should be 4/5 percent the normal average...but i still dont care what there saying that may be a true result. Let me give you an example, a type 2 with a constant result of lets say 7 percent HBA1c sounds good dont it? with a type 1 with 7 percent that to me sounds exactly the same dont it?? no its not most of the the time and iam willing to stick my neck out type 2s would probably stay in that region for most of the time to get that result...and for some type ones they would be hypoing and going abit higher, so whats best control?? well i say and i know its a type one discusion but id say type 1 why?? i feel having hypos for type 1s is generally good as long as you dont have severe ones and can control them. what i mean is your hba1c results is the amount of rubbish that sticks to your stuff, if your hba1c is at a constant that is sometimes high that would cause more damage surely than another diabetic that sugars sore high and come crashing down. that means the sugar hasnt got time to fix on the walls etc. and for my opinion its good in a way to hypo but it depends how strong it is, as i have 2 injections a day there very slow but not only that when you have an hypo i read somewhere your liver kidenys dump out some glucose to keep ya ticking over so even that seems a good idea... one of your organs is geting rid of of sum old rubbish then it will stock pile it. But a food for thought is someone that never hypos alot how can there body kick out the sugars that are sitting there for days weeks or months on end
 
And one more point alot of the specialist etc i see are rubbish ive listened to them way too much but in fairness they as always jst go by the general stuff and havent got a clue, most of them havent got diabetes its all down to paperwork as usual. they do try but id suggest if they had what we had they would fold in a few weeks. its hard to put alot of trust in the system but id advise take what there saying count carbs do the dafne course but do not take there word as gospel... some are good but think at the end of the day all they have done is a few courses it dosent mean anything. people that have lived it know it. And one last point as its late i went to see my diabetes specialist to be fair he is a good guy i like him, ive been on humilin m3 twice a day which i love i tried nova rapid and lantus and levimir which i didnt like to keep it brief, ive now gone back onto my twice a day but i suggested to him iam doing my 2 injections a day and if it gets to high etc or extra snacks or carbs for dinner i can inject nova, then i can limit the amount of times i inject have a good base of insulin in the system and if i wana over eat i can inject abit of rapid when i see fit and all i got was interesting a good idea, my point is shouldnt he suggest things like that oh well.... id work for free if i could help someone out
 
DannyH said:
Thanks for replys and interest, in a way your keeping me doin what iam doing, right lets kick this one off.. the specialists out there can diagnose alot of things but they cannot predict which diabetic or when complications can occur.. why? they seem to have the results if your HBA1c is above this percent your have x percent geting this complication. Iam saying now its ****. yes your sugars according to the bossses should be 4/5 percent the normal average...but i still dont care what there saying that may be a true result. Let me give you an example, a type 2 with a constant result of lets say 7 percent HBA1c sounds good dont it? with a type 1 with 7 percent that to me sounds exactly the same dont it?? no its not most of the the time and iam willing to stick my neck out type 2s would probably stay in that region for most of the time to get that result...and for some type ones they would be hypoing and going abit higher, so whats best control?? well i say and i know its a type one discusion but id say type 1 why?? i feel having hypos for type 1s is generally good as long as you dont have severe ones and can control them. what i mean is your hba1c results is the amount of **** that sticks to your stuff, if your hba1c is at a constant that is sometimes high that would cause more damage surely than another diabetic that sugars sore high and come crashing down. that means the sugar hasnt got time to fix on the walls etc. and for my opinion its good in a way to hypo but it depends how strong it is, as i have 2 injections a day there very slow but not only that when you have an hypo i read somewhere your liver kidenys dump out some glucose to keep ya ticking over so even that seems a good idea... one of your organs is geting rid of of sum old s*** then it will stock pile it. jesus i can rant but a food for thought is someone that never hypos alot how can there body kick out the sugars that are sitting there for days weeks or months on end
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Danny any hypos are a concern. I have had a dangerous hypo of 1.1 :shock:a while back, but If I had a hypo of say 3.5 I,personally would not see it as serious, but hypos are not good because of highs and then crashing lows. Having long term highs.................. not good, highs and crashing lows, very bad for diabetes. Complications can set in and can cause severe eye problems, this is just an example, but trying not to be scaremongering. Very low hypos can eventually give you hypo unawareness, this could lead to a person not knowing how low it is and then going into a diabetic coma, which could be fatal :( If you have awareness in the 3's, which I do now, then you are in control and can treat the hypo effectively. Also, if a driver has to have some sort of treatment regarding a low hypo and needs assistance from a medical person, then their licence can be revoked. I am not a driver myself, but I'm sure a driver will be able to clarify the procedures.
As I said in my earlier post, its about getting the balance right and it can be extremly difficult for some people. No two diabetics are the same and it can be alot of trail and error at times to try and get it right, what works for me or you wont work for many others, because we are all so different because of lifestyle, weight, build, metabolisum, gender and not forgetting genes play a big part as well.
Regards RRB
 
I was diagnosed with T1 18 months ago at age 29. My pump costs the NHS a lot, and I am one of those 'poorly controlled'. I have been told from helpful friends that everything from spirulina, cinnamon through to pregnancy will cure me... Just look at this story in the Mail, and that nice girl at The health food shop said... Not to forget a carb free life is the way forward. I have been chastised, told what I will lose if I don't sort it out, but mostly encouraged by by DSA, GP and consultant. My last HBA1c was 16. Yes, 16. There were real reasons, but It is disheartening when you try so hard but your body lets you down, even when you really try, but if wearing your HBA1c as a badge of honour helps, good for you! Just please try to look behind the figures for those of us who are trying, knowing what is at stake, but are maybe finding control evasive or overwhelming. Every diabetic has a battle, from media stereotypes of a lifestyle disease to those coping alone or with everything you could want but are scared. Different health authorities have different policies, and there are gross inequalities. This can further hamper confidence when you are made to feel guilty for something out of your control. I have had an A&E consultant tell me I am too old to be diagnosed as type 1 and must be type 2, a nurse try to give me 38 units of novorapid, and been told I must be omitting insulin as I am thin and have high readings. All of this makes me want to scream and walk away as I do feel those single figures are for others, never me. But then I remember what my wonderful DSN told me, it's not always the numbers that matter but the effort you put in and one day, I will get there. This has given me hope, not legitimised poor control. For me, and I suspect many others, it's like the tale of the hare and the tortoise.
 
Hi im 25 years old and type 1 diabetic for last 6 years and i am struggling VERY much! Almost as if i forget im diabetic, i have so much going on at home.....at work.....generally that leads me to forget to take my insulin. I have decided to go onto an omnipod as a last resort to see if that helps. I think sub conciously i am still struggling to accept im diabetic, a little bit of the "why me?" as no one in my family is diabetic so i dont really have anyone understand from my point of view and i try to be like other girls my age who are healthy. I drink alcohol at weekends with my fiancee in the house and thi is the main part when i forget to take my insulin. Jut absoloutley struggling and hoping the omnipod helps me tomorrow :(
 
I can relate to your need for understanding, I didn't really accept my diabetes for around 20 years. One harsh thing that you have to understand it that nothing will change until you do. Sorry. The pump is not a magic cure all, if anything it is quite a lot more work than mdi.

I wish you luck, but please be careful.


Sent from the Diabetes Forum App
 
So got to ask- how do you expect an omnipod to give you all the realisations that you are a type 1 and got to be prepared to put work into looking after yourself? An omnipod or any pump needs a lot of time and effort and is NOT a fix all for diabetes unless you are prepared.... An omnipod is actually great but they can have problems.. Are you prepared for the work involved?


Sent from the Diabetes Forum App
 
No i'm aware the omnipod isn't a magic cure and it will require a lot of hard work from myself, but i am ready for this. It is a lot easier having the pod connected to me just using the machine to administer the correct amount of insulin, as opposed to getting insulin pens out. I've been ignorant for far too long and i'm ready to take the bull by the horns and live with diabetes.:)
 
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