too much apathy about diabetes

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bev

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Hi all,
I will probably be in the minority on this issue, but I do think there is some 'denial' happening in the diabetes world.

Diabetes is not a fluffly little illness that can be overcome with the wave of a wand! If you dont take steps to reduce your hba1c then you *will* get complications - it is as simple as that. I dont make up the rules - I just try to follow them.

I make no bones about the fact that Alex's hba1c was a dreadful 9.6 when he was on injections and I live in fear that I may be responsible for him having eyesight problems. I am sort of happy that his hba1c is now 7.1 - but I still strive for him to be in the 5% club as I really dont want him suffering any complications.

I am not criticising any individuals on here - I just wonder why there seems to be such apathy regarding any future complications. Alex went on a DUK holiday and there was a 15 year old boy who had been diabetic for a couple of years - but had terrible control - he was blind in one eye and his foot had no feeling in it - and will probably be removed. This was due to the fact that his hba1c was 14 and his poor mum was also disabled and obviously had her hands full. The boy learnt a lot on the holiday and I hope he took away with him the message that if you dont take control of diabetes - it will take control of you.

I am so saddened by some of things I read sometimes and I do have the worry that some people just dont take diabetes seriously and all the consequences if they dont.😡

Please understand that this is not an attack on anyone in particular - it is just my overview of the general apathy that can sometimes surround a life- threatening condition such as diabetes.

A boy in Alex's class at school (also diabetic and on injections) told Alex that he is just lazy using the pump and he should go back to injections! This boy has an hba1c of 14 and my heart bleeds for him and his family - he is only 11! He will no doubt have eye problems before he is 18 and this makes me so angry that this could be avoided!

Sorry for waffling on - I just get a bee in my bonnet and I sometimes feel that people may think (nobody on here - I mean family) that I am over the top with regards to dealing with Alex's diabetes. I probably am a bit - but its all for the best of intentions.🙂Bev
 
Many people who don't have diabetes don't understand, especially as it is something that can't be seen. There are a lot of people who are diabetic who think if I take a pill/inject things will be OK.

When I was first diagnosed I didn't have a clue and my doctor was no help, all I got from him was a lsit of negatives. If all doctors are like this, I'm not surprised some folks are so apathetic.

One of my neighbours said to me I was OK because I work in a library. I pointed out she was home and had more time than me to do research and search out books and stuff but she still comes to me when she needs a recipe or any other information because she can't or wont do it herself!
 
I find all this hard to understand. I have spoken to a couple of women at work whose husbands are type 2's. One is on tablets the other diet and exercise. Neither of seem particularly bothered about helping themselves and just eat whatever they like, the one is particular has an appalling diet and has never been to the hospital for his eye test.:( I mentioned the other day how I had watched my father suffer after years of neglecting his condition and she looked at me as if I was making it all up😡

Lynda
 
as caroline said many people who don't have diabetes don't understand i've only known about mine for about 10 days and i have realized very quickly the word ' diabetes ' is like a no go area , i'm very pleased to say my GP is very helpful she explained the basics and the practise nurse is wonderful she explained so much and she told me her mother is type 1 so she has personal experience and a genuine understanding of our situation
 
The thing that pisses me off most is the assumption that Type 2 did this to themselves, that it's somehow our fault. Even the medical professionals cling to this idea when research is showing clearly that this is not the case. I challenged my doctor early on over her attitude and told her to read, as I had, the facts. She's much better now but that's a common misconception.

I never over ate, just the opposite in fact, I'd always been really picky (allergies'll do that for you) and tried hard to eat a healthy and varied diet. Until last year when the depression kicked in and I stopped looking after myself that is. I more or less stopped eating then and lived pretty much on fresh fruit, fruit juice and yoghurt with the occasional raid on KFC. I eat more now than I did then.
 
Hya Bev

I agree with your post. I get really down and blame myself when J's b/s are either too low or too high. I also think that for people who do not live with diabetes themselves they think that because they can't see diabetes they don't think its that bad. Its bloody hard work and can be deadly if not treated propley. Thats awful about the 2 little boys you know 14 for A1c is not good enough. They should have alot more done for them.

Gem x
 
My history of diabetes dates back 25 plus years, however, with only the last 11 years I've been on insulin. During those intervening 14 or so years while my pancreas was finally giving up all it could produce I began to develop some fairly significant complications from diabetes which took 7 years to appear.

These have only come to light in the past four years, since going on insulin 11 years ago my highest HbA1C was 9.2% and that was 9 months ago, it's since dropped back to 7.2% I want it back to 6.2% in a few more months. So it's been fairly well controlled and diabetes and I have survived and lived together pretty well. Well, as well as you can.

Here's the real world for anyone doubting, my complication is neuropathy - painful diabetic, peripheral, autonomic, none are fun and I have all three.

The impact, both my lower legs and feet are permanently numb, walking can at times be fun, especially with the balance caused by my hearing loss. I can't tell temperature anywhere in my body, including my mouth.

I have phantom pains all the time. And over the past year my bladder and bowel have become impacted by autonomic neuropathy. To have a pee I need to use a tube - that's five or six times a day I need to catheterise.

Oh and on the topic of autonomic neuropathy I also have at times and unstable heart rate, 20bpm at times and then 230bpm at other times. Normal most of the time. But my body and it's feedback systems loose the plot from time to time.

This condition is for life and it's not a rehearsal. People need to get real about their management and their understanding of diabetes.

I read people bitching about not getting the sympathy they deserve from their medical practitioners, but then I read that they eat as they please, drink as they please and elect to do little or no constructive exercise.

By the way, I say 'read' because I have to read everything, the written word or lips, I hear nothing. So it's not people here, it's so many diabetics who need their medical practitioners to boot them up the backside, because they won't take control of their own lives.

They live in denial. And need to wake up and realise if you manage this condition properly you can have a good, active and long, quality life. If you cut the corners, ignore the advice and mentoring you're given then the only person who is going to loose is you.

Time for people to sit up and take action.

The issue of type 2's being restricted on test strips is pathetic and in my opinion the most short sighted, ignorant stance the NHS can possibly take. But then just how many people don't take the medication they are prescribed? So why should they be helped?

On the subject of testing and T2's, there is a very strong body I would think could help out in driving this to become a high profile campaign, the meter and test strip manufacturers.

Diabetes UK should be getting off their useless fat backsides and be uniting all parties and taking this to parliament.

The youngsters with and without diabetes are going to have to pay so much into the NHS in the coming years as the long term costs to manage and treat the complications of diabetes. As 'consumers' we're not right, we should know how to manage our condition and to manage it in an effective and efficient manner. If you're not going to look after yourself today for your health tomorrow, why should anyone else care for you?
 
Bev I with you here 100%.

The problem is that people who don't have d in their lives don't know, I was an offender. I knew nothing about d and then Jessica was born and it was thrown at us like a steam train and I had to learn fast purely due to the fact that many medical teams also don't really know about d 'on the ground' so to speak, they know text book. How many text books do we have on this forum.

I too have to say that some people even with d in their lives and this includes everyone ie family members who don't have d, don't have the first clue. HbA1c is not the b all and end all of diabetes but it plays a big part at giving you a guide. I have met people who have had d for years and years who have not bothered or have had bad teams but then not done something about it and the problems they have now are not needed to be told on here.

We all know from experience and reading each others message what can happen, some are doing great, some are getting there, some have accepted it is time to change but some are still in denial which I find so sad and want to help but they have to help themselves first (as some of you have found out to your advantage).

Good thread Bev and maybe this thread is a wake up call to just one person and if so how brilliant. 🙂
 
I agree David, but if like me you want to take control of your diabetes and condition but aren't given the right support to do so then it does become harder.
I've wanted to get my levels right for 4 years but noone would listen to me I was made to feel guilty at every appointment etc. Its just not helpful when you have doctors like that
 
David

Thank you for writing your message. It is hard to read anything like that and especially if you know the person as we know you. I hope your message is read and noted, it is sending a very strong message and I agree with everything you say.

Take care
 
smile4loubie said:
I agree David, but if like me you want to take control of your diabetes and condition but aren't given the right support to do so then it does become harder.
I've wanted to get my levels right for 4 years but noone would listen to me I was made to feel guilty at every appointment etc. Its just not helpful when you have doctors like that
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Hi Louise

I don't think David was directing this as people like yourself. You are going great guns and dealing with it, you are doing so well as you have got yourself back on track and are slowly getting there. Think positive thoughts Lou, you are doing fab. 🙂
 
Bev, thank you for writing this.

As you know I have recently been told I have some form of nueropathy. Doctor said it would get better with good control as its 'transient' and he's right, I am having little to no issues with it. The fact I have this is entirely my own fault, from my years at college and uni when I just didn't care because I didn't get the help I needed. My foot issues didn't come to light until after I'd sorted myself out.

What really gets to me is the fact that even though I now have very good control and watch what I eat more than I ever did (korma tonight, 9.8 pre dinner thanks to late lunch, 6.1 just now - thanks to weighing and counting the carbs), I am suffering. What gets me is the fact that there are so many out there who don't look after themselves and have nothing.

It just isn't fair!

I have a friend who has had diabetes for 15 years (Ive spoken about her before). She hasn't tested her blood sugars in nearly 3 years. She eats what she wants when she wants and won't inject for snacks. She also smokes and drinks to excess. And when I try and help her I get nothing but disdain. She thinks she will be ok and can eat whatever she wants and do whatever she wants. But I know for a fact that in the future, she is going to suffer for it.

What happened to me is my fault. Even though I have never really had 'terrible' control (well...i like to say that...) it is partly down to bad luck. I wish I could be like so many other diabetics who have had diabetes for 20 plus years without any complications. I really do.

At least my 'transient nueropathy' is getting better like the doctor said it would. I barely have issues with it now, and I keep on taking my tablets for it like a good girl.

I wish people would sit up and realise what they're doing to themselves. Some of us had to learn the hard way, and I get so saddened and angry by it all 😡

I think I might go and cry now.
 
Adrienne said:
Hi Louise

I don't think David was directing this as people like yourself. You are going great guns and dealing with it, you are doing so well as you have got yourself back on track and are slowly getting there. Think positive thoughts Lou, you are doing fab. 🙂
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Indeed, my comments weren't aimed at any specific person, but to everyone. The NHS is far from perfect, but it's also superb in comparison to many healthcare services around the world, but it's view of diabetes is very short term. Looking at budgets today, not tomorrow, and certainly not in three or fifteen years time.

The explosion in the number of people being diagnosed with diabetes has caught many people off guard, here I am referring to health care professionals, not so much the patients.

Given his impact, the system isn't geared in all honesty to give the cover needed to support this number of patients.

Recent conversation implied that T1's may well soon be moved from specialist care into primary care (GPs). This is frightening as they can't cope with type 2's so how do they cope with a 'minority' of type 1's?

Clearly a lot more needs to be done at all levels if people are to get what they deserve out of the system we support.

There are many, many people who do care, who do worry about how they cope and manage their diabetes. Any effort is good, and will I hope impact the condition in the long term, it's no push over living with diabetes, I think it's harder for T2's in many ways than T1's. Of course, there in lies the reason for the formation of this forum and long should it continue, there is some great resource to read through from the past 15 months or so since it was created, and an army of people who have been in many of the places others find themselves in.

Perhaps there is no other condition that impacts the human body in so many ways as diabetes does, it's an eye opener for me, even so many years in.
 
this is why is important to raise awerness like today a lots of "normal "people dont understand
 
Brilliant thread bev,

It brought tears to my eyes thinking about those kids who've had D for such a long time. By the time they are my age they will have been diabetic for 35 or more years!
When i hear about bad control it makes me want to rush round their house and give as much advice as possible to stop that poor control. But i also know that in reality there is always a balance to be struck.
I like to think i've kept good control most of the time but i have also been busy running a business, going out of business, taking over a business, bringing up kids, getting divorced etc..... and more (won't go into details now!) all the time trying to stop myself losing control of the old D.
I know if i'd sat at home all day measuring out my food, exercising and blood testing, i could have done even better but i have to ask myself what is the right balance for me? I do have a life to live also.
One of the worst things about this condition is that it truly can be 'the silent killer'. I can't remember the number of times over the years that people i've known quite a long time, who i may only meet a few times a year are surprised when they are reminded i'm diabetic and sometimes it does feel like we are all hiding the condition from people too much because we don't want to be seen as ' different'. By doing this i think we may be sending the message it's nothing to worry about and very easy to deal with. WE ALL KNOW THAT ISN'T THE CASE.
 
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my opinion is that it is down to postcode lottery on the quality of service when i was growing up the knowlege of diabeties was that it had something to do with sugar that there was t1 and t2 and insulin that is until i was diagnosed myself.

there should be a campain on the television and on all radio stations about this the serious of it all worts and all we have ones for cancer etc.

why dont diabeties uk takes note end educate the uk if one person takes note and takes control it would be worth it esp when diabetes of all type is on the increase (well on the n h s say so) and they are so happy to blame lifestyle!!!
shout shout and what the last thing shout and start educating people you know who you are!
 
AlisonM said:
The thing that pisses me off most is the assumption that Type 2 did this to themselves, that it's somehow our fault.
QUOTE]

Sorry the quote is a little out of context.

My dad is type 2 and I am type 2. When I told my mother she said well you and your father are a pair well matched and it is no wonder it happened to both of you.

My response was not very lady like, and my mother has never said anything again!
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As a type 2, I am pretty sure that I did do it to myself (even if I did have a genetic pre-disposition). I am overweight, my eating patterns were poor and when I did eat, it usually consisted of large portions.

My only saving graces were that I tended to eat good food, never learned to drive a car and cycled everywhere locally (but that was starting to tail off before diagnosis!). So, my new lifestyle is not a complete shock to the system.

Perhaps, if I had lived more healthily in the past, my diabetes could have either been avoided completely or may only have kicked in much later.

Another good thread, by the way!

Andy
 
Andy HB said:
As a type 2, I am pretty sure that I did do it to myself (even if I did have a genetic pre-disposition). I am overweight, my eating patterns were poor and when I did eat, it usually consisted of large portions.

My only saving graces were that I tended to eat good food, never learned to drive a car and cycled everywhere locally (but that was starting to tail off before diagnosis!). So, my new lifestyle is not a complete shock to the system.

Perhaps, if I had lived more healthily in the past, my diabetes could have either been avoided completely or may only have kicked in much later.

Another good thread, by the way!

Andy
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Hi Andy,
Thats refreshingly honest of you and i think it may go some way to even 'helping' you to understand why you were diagnosed as a type 2. I do of course realise that some people are just pre-disposed to being type 2 and they are slim and live a fairly healthy lifestyle - so it is a puzzle as to why some otherwise 'healthy' people can end up with type 2 isnt it?:confused:Bev
 
bev said:
Hi Andy,
Thats refreshingly honest of you and i think it may go some way to even 'helping' you to understand why you were diagnosed as a type 2. I do of course realise that some people are just pre-disposed to being type 2 and they are slim and live a fairly healthy lifestyle - so it is a puzzle as to why some otherwise 'healthy' people can end up with type 2 isnt it?:confused:Bev
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Wow Andy, you don't often hear people saying that. I agree with Bev.

I feel the same as you actually, in that if I don't lose loads of weight fast I will also become type 2. I am just praying that my body isn't pre-disposed to becoming type 2 whether big or small. There is no type 2 (or 1) in any of my family and there are some very large people in it. They have heart problems instead 😱 You would think that someone in my position, ie know how damned hard diabetes is (1 or 2) would change lifestyle quickly but it is hard, as you all know. I admire you all but don't want to be diabetic hence the nearly 1 stone gone. Just a few (well lots) more to follow.
 
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