Struggling to comprehend why I didn't see it coming

[the_anticarb]

If you'll excuse the pun.

I was just thinking today back to a few years ago, I was told I had background retinopathy and at first get worried and I did try to control my diabetes but I kept going hypo all the time and put on weight and found it too hard. I was referred to a dafne course but it took a year for this to happen, and in the mean time I kind of gave up.

What was I thinking? That the retinopathy would go away just because I was finding things hard?

Now i have seen what can happen, I don't understand why I didn't realise what would happen if I failed to take action.

I really feel like the past however many years of living with diabetes until I got pregnant and began to control it i was living in a kind of fog where complications didn't happen to me only other people. I think I actually convinced myself I was immune because after being badly controlled for so many years I thought it would have happened already if it was going to....who knows what rubbish I told myself just to avoid having to confront reality.

Even after I'd had my baby I had lapses now and then but nothing like before.

Now I have seen what it's like when your eyes are bleeding from the inside out and you're at the mercy of a bureaucratic blundering NhS that doesn't care what affect it is having on your life, I won't be making this mistake again but is it too late to stop the train? I am fearful that my eyes will continue to deteriorate whatever I do now. I mean I was reasonably well controlled the past two years and still it progressed.

But I just don't understand how I could have lived in this fog of denial for so long and not comprehended that eventually the complications would catch up with me.

Anyone with me on this, because right now I'm feeling pretty stupid.

Particularly when I read the posts from people who've only been recently diagnosed who are taking it so seriously, cutting out all their favourite foods and I just feel like yeah I tried to cheat it and now I'm paying for it.

 

[SouthernGeneral6512]

I often feel if I could meet my younger self it wouldn't be a pretty sight because I'm mad as hell with him. So why all the complacency in years gone by? I can only assume like most people I had only experienced good health during the early part of my life and so assumed it would always be (more or less ) the case :sick:.

I suppose the only mitigating factor I can think of is I looked after my father for a few years when he had altzheimers and pretty much lost the plot and I think that's when a lot of the damage was done because I was early 40s by then and really was no longer as able to deal physically with poor health choices as I once was.

Do you not feel anti-carb if you had read all the stuff in this thread a few years ago it might have made a difference? I think it would have to me but I just never joined a diabetes forum and got exposed to the realities of the situation. I do feel as well doctors aren't as scarey as they used to be if one of them had realy put it on the line to me a while back and told me exactly what I was heading for in graphic detail it may have made a difference but they just seem to want to be your friend now which is not always for the best :x

 

[Robinredbreast]

If you'll excuse the pun.

I was just thinking today back to a few years ago, I was told I had background retinopathy and at first get worried and I did try to control my diabetes but I kept going hypo all the time and put on weight and found it too hard. I was referred to a dafne course but it took a year for this to happen, and in the mean time I kind of gave up.

What was I thinking? That the retinopathy would go away just because I was finding things hard?

Now i have seen what can happen, I don't understand why I didn't realise what would happen if I failed to take action.

I really feel like the past however many years of living with diabetes until I got pregnant and began to control it i was living in a kind of fog where complications didn't happen to me only other people. I think I actually convinced myself I was immune because after being badly controlled for so many years I thought it would have happened already if it was going to....who knows what rubbish I told myself just to avoid having to confront reality.

Even after I'd had my baby I had lapses now and then but nothing like before.

Now I have seen what it's like when your eyes are bleeding from the inside out and you're at the mercy of a bureaucratic blundering NhS that doesn't care what affect it is having on your life, I won't be making this mistake again but is it too late to stop the train? I am fearful that my eyes will continue to deteriorate whatever I do now. I mean I was reasonably well controlled the past two years and still it progressed.

But I just don't understand how I could have lived in this fog of denial for so long and not comprehended that eventually the complications would catch up with me.

Anyone with me on this, because right now I'm feeling pretty stupid.

Particularly when I read the posts from people who've only been recently diagnosed who are taking it so seriously, cutting out all their favourite foods and I just feel like yeah I tried to cheat it and now I'm paying for it.

If only sometimes, we had that magic crystal ball to look in to.............................if only :roll: RRB

 

[Unbeliever]

The thing which catches everyone out is that it doesn't happen when you are uncontrolled but when you regain control after a period of being uncotrolled.
With your history MODY and all it may have been impossible to control anyhow. In my hours of browsing around the internet I have read several imes that it can take up to 3 years for better control to make a differnce. Hopefully, this will happen to you and before too much damage has been done.
Don't despair just yet.
I agree with you though, I wish I had found this site when first diagnosed .

 

[catherinecherub]

Anyone reading your experience will feel for you AC.

This article might help you recognise what is going on with you right now and also make you understand that all the soul searching and self blame is counter productive and the stress it creates will not do you any favours.

The Psychology of Regret.
http://www.psychologytoday.com/blog/the ... ogy-regret

When we are young, we are risk takers, we live for the moment as we see ourselves as invincible and nothing bad is going to happen to us. This is reinforced when we get away with something for a long time. It is the same when youngsters smoke cannabis. They do not see it as a problem but some people in their 40's and older, who have smoked it since their teenage years, will tell you that they wish they had left it alone as it has caused bouts of crippling depression throughout their adult life. Nobody can forecast which people will succumb to the depression but the risk is there.

I hope you can come to terms with your sadness and that the outcome with your eyes will be favourable. (((hugs)))

CC.

 

[angua]

I'm with you ac - my first post here was along the same lines .. its gutting to have the feeling that 'if only you'd' …..

I feel also that in some respects southern general is right - doctors just don't seem to tell us enough about our conditions let alone be forthright about possible outcomes - they more often than not only deal with the result, rarely prevention in a sense thats personal to you.

You mention that it took a year to get on the dafne course - I think that time frame would indicate a lack of medical urgency and prompt most people to give up until the course starts.

For all the people "who've only been recently diagnosed who are taking it so seriously" there are an equal number of us who struggle, with habit, with unconscious behaviours and with not ever being perfect.

"I just feel like yeah I tried to cheat it and now I'm paying for it" & "just to avoid having to confront reality"
yep, you, me and a millions others, because we're human, we make mistakes, sometimes we’re weak, sometimes we can be strong – there will always be some people who will get away with it, most of us won't but it doesn’t stop the hope drive which deceives us all from time to time
All you can do is plug away at what you know you need to do –

No-one I ever heard of woke up and started their day off with “ okay how many terrible choices can I make today to screw my life up in the future

Thanks for the honesty of your post and good luck with your eyes

Gilly x

 

[the_anticarb]

Thank you everyone who has replied. I do feel a little better now, so I appreciate the responses. It's not that I am angry at my former self, but I just wanted to understand why I thought it wouldn't happen to me. I still don't know the answer - I guess we all shield ourselves from reality when we can't take it - but reality eventually comes knocking on the door very loudly, or even breaks the door down, when we try to shut it out.

Just to clarify what happened with the DAFNE course, I was actually referred and then the hospital forgot about me! In the end I had to take the initiative and contact PALS who looked into it on my behalf before the hospital admitted I'd got lost in the system and got me on the next course. So yes there was a lack of medical urgency. Before the DAFNE I was just told 'inject 6 units with every meal' which as we all know only works with a regular intake of carbs per meal. Having an eating disorder, there was nothing regular in my eating. Anyway I just remember really struggling with it and giving up. This was a few months after I'd been diagnosed with background, back in 2005. The doctor I saw did try and help me but he couldn't really provide a regular support as I needed. That's what the nurses were for and for whatever reason - under resourced NHS, me being a difficult to treat patient, it didn't happen. It was only when I fell pregnant that I suddenly got all the support I needed, I could call a midwife whenever I needed to, and she could contact the DSN. I remember there was only one part time DSN for the whole hospital though and you couldn't contact her directly because she was so overstretched so the regular (non pregnant) diabetics had no chance.

So whilst I do take responsibility for my own actions (in giving up) the NHS support wasn't massively there. I guess we'd all like to think there's that safety net of support if you get a chronic illness but the reality is that you have to take care of yourself, no one else is going to. Those that can't or don't fall by the wayside.

Thanks for the article Catherine Cherub I have not read it yet but will do.

Unbeliever if it takes up to 3 years to get control of retinopathy then at least I have 2 years behind me. Hopefully 2 will be enough! I have read that vitrectomy can completely stabilise the eye so I'm really hopeful that the left one will not be any more bother. The right one I'm not so sure about, I'm kind of suspicious that it hasn't been as bad as the left one yet, I keep thinking does that mean the worst is yet to come? At least I know about the vitrectomy now, so the first sign of trouble I will be asking Mr. C to do the same with the right eye. But who knows that one may stabilise too. Some people seem to have stabilised with one eye having a lot more treatment than the other (eg noblehead). I do think the fact that the right eye was lasered in pregnancy may have made a big difference as to why it's been relatively quiet lately. I do have a feeling, call it optimism, or just wishful thinking, that I have been through the worst of it now. I hope I don't end up eating those words! My mum has had diabetes for 50 years, always been pretty careful, and hasn't got even the slightest hint of background retinopathy so let's hope I have good genes.



[*]

 

[Unbeliever]

Well I hope so too of course. I think it is quite common for one eye to be affected more than the other. it was only my left eye for a ime. Now there is still some room left for laser in the right eye which has never been as badly affected as the left. others say the same.

Having youth on your side is a plus too.

 

[the_anticarb]

Well I hope so too of course. I think it is quite common for one eye to be affected more than the other. it was only my left eye for a ime. Now there is still some room left for laser in the right eye which has never been as badly affected as the left. others say the same.

Having youth on your side is a plus too.

Really - how does that work? I had heard that the younger the patient the more aggressively the new vessels can grow, as its a faulty correction mechanism so presumably stronger in a younger body?
So I always thought for once my youth was a disadvantage.
Would be interested to hear how youth is beneficial

Thanks

 

[SouthernGeneral6512]

Thank you everyone who has replied. I do feel a little better now, so I appreciate the responses. It's not that I am angry at my former self, but I just wanted to understand why I thought it wouldn't happen to me. I still don't know the answer - I guess we all shield ourselves from reality when we can't take it - but reality eventually comes knocking on the door very loudly, or even breaks the door down, when we try to shut it out.

Just to clarify what happened with the DAFNE course, I was actually referred and then the hospital forgot about me! In the end I had to take the initiative and contact PALS who looked into it on my behalf before the hospital admitted I'd got lost in the system and got me on the next course. So yes there was a lack of medical urgency. Before the DAFNE I was just told 'inject 6 units with every meal' which as we all know only works with a regular intake of carbs per meal. Having an eating disorder, there was nothing regular in my eating. Anyway I just remember really struggling with it and giving up. This was a few months after I'd been diagnosed with background, back in 2005. The doctor I saw did try and help me but he couldn't really provide a regular support as I needed. That's what the nurses were for and for whatever reason - under resourced NHS, me being a difficult to treat patient, it didn't happen. It was only when I fell pregnant that I suddenly got all the support I needed, I could call a midwife whenever I needed to, and she could contact the DSN. I remember there was only one part time DSN for the whole hospital though and you couldn't contact her directly because she was so overstretched so the regular (non pregnant) diabetics had no chance.

So whilst I do take responsibility for my own actions (in giving up) the NHS support wasn't massively there. I guess we'd all like to think there's that safety net of support if you get a chronic illness but the reality is that you have to take care of yourself, no one else is going to. Those that can't or don't fall by the wayside.

Thanks for the article Catherine Cherub I have not read it yet but will do.

Unbeliever if it takes up to 3 years to get control of retinopathy then at least I have 2 years behind me. Hopefully 2 will be enough! I have read that vitrectomy can completely stabilise the eye so I'm really hopeful that the left one will not be any more bother. The right one I'm not so sure about, I'm kind of suspicious that it hasn't been as bad as the left one yet, I keep thinking does that mean the worst is yet to come? At least I know about the vitrectomy now, so the first sign of trouble I will be asking Mr. C to do the same with the right eye. But who knows that one may stabilise too. Some people seem to have stabilised with one eye having a lot more treatment than the other (eg noblehead). I do think the fact that the right eye was lasered in pregnancy may have made a big difference as to why it's been relatively quiet lately. I do have a feeling, call it optimism, or just wishful thinking, that I have been through the worst of it now. I hope I don't end up eating those words! My mum has had diabetes for 50 years, always been pretty careful, and hasn't got even the slightest hint of background retinopathy so let's hope I have good genes.



[*]

There is just something about human beings that allows us to overlook whatever is convenient to overlook ... for example many Germans in the 1930s completely ignored the fact that they were giving power to someone who would in all likelyhood start a war that would ruin the country :sick:

 

[the_anticarb]

Having looked into it a bit more I can understand that when the blood sugars are high for a long time, this doesn't cause too much damage as there is more oxygen and nutrients getting to the cells due to increased blood flow caused by the high sugar levels. however, damage is still being done to hte cells. But it is kind of being compensated for by teh increased flow. Then when the blood sugar drops to normal levels, there is reduced oxygen supply and the cells really begin to feel it, so they signal to grow new blood vessels. Hey presto proliferative diabetic retinopathy.

That's why this disease is so sneaky, all the while I was doing the damage it wasn't acutally that bad it was only when I got my sugars down that it all went haywire.

I think also as the retinopathy does not require treatment in the earlier stages, I did not take it as seriously as I should, I remmeber thinking if it was that bad, the doctors woudl do something, so maybe I can wait until it reaches the serious stage before i have to sort myself out. Big mistake! All the stages are serious! By the end stage it is too late.

I have read it takes 1-3 years to remodel the blood supply after acheiving control, so I'm hopeful that 2 years in, I have repaid my 'debt'. We will just have to wait and see. I did totally underestimate the retinopathy, I think we are so used to the doctors being able to fix most things that go wrong with us, unless youve been seriously ill before it takes a while to realise that sometimes they can't.
At least I do not have any other complications I am aware of. I know that the kidneys can often be damaged too, and then make the eyes worse due to higher blood pressure. Hopefully I have managed to stop it before any further damage to my body.

 

[Unbeliever]

I hope so too anticarb and many people have experienced this first hand.

I don't know about you but I feel that there is a great lack of information out there about this disease. Oh everyone seems to know vaguely that that diabetics can lose their sight and possibkly thier feet but although there is now he annual screening there could be more information available .around that . I don't feel that GPs have enough information either.

It seems o me hat his is yet another reason why diabetes should not be treated solely in the GP surgery.To separate diabetic eye disease from diabetes , doesn't make sense.
We find out the hard way but only those Ps who have a real interes in diabees are informed about it. My Pracice DSN has never even seen the eye clinic although she seems forever to be aending courses at the hospital.

She assumed that consultations were cosy chats and not the barrage of tests and sometimes treatment they actually are.
She wondered why the consultant did not have time or space on his lapop sized screen for HBA1C results as well as OIC scan and angiogram resuls. She assumed that injections to the eyes were two minute procedures performed by a nurse. She had no idea hey were classed as day surgery and often nvolved the whole day.

You would at least expec some familiarisTION With he treatment of complicaions o fiorm part of the training.

Perhaos T1s are beter off in this way if they are treated at hospital.
I still find it a mater of concern that many well -meaning GPs are naware hat bringing bg down too quickly is dangerous , when every HCA in the hospital seems o know this.

 

[the_anticarb]

On the subject of bringing down bg's less quickly, I think this would be quite hard to do. In my head, I'm either controlled or uncontrolled. Obviously my situation was a bit different because there were other things to consider (ie my baby!) If you'd asked me at the time though, would I rather miscarry/stillbirth/birth defects or get retinopathy to the level I did I would still have chosen the retinopathy. I didn't think I could conceive easily anyway because of my health problems, and I was actually underinjecting at the time I conceived as part of my diabulimia thing (now thankfully recovered from). So he really was a miracle baby and I was desperate not to lose him, particularly as the midwifes were so suprised I'd conceived with a high hba1c (just under 10) and I think were half expecting something to go wrong with the pregnancy. If he'd been born with a birth defect I don't think I'd have been able to forgive myself. No, better that I damage my own body than ruin someone else's life before it's even begun. It really was the perfect storm retinopathy wise though, and I'm really lucky I didn't have it too bad then, I mean I could have had very uncontrollable retinopathy at that time, gone blind even.

Sorry I digress...anyway what I'm saying is, for someone who was completely uncontrolled like me, not testing, underinjecting to lose weight etc there wasn't really any half way house. Sure I could have kept my target bg's a bit higher for a while but the retinopathy would probably still have happened. Others, who are not quite so bad as I was, may fare better with a half way house approach. But I think most people completely underestimate retinopathy until, like you and I, they've been through it. I did have a horrible sense of 'I'm on my own now' when I went to the hospital and thought they weren't taking it seriously. I still feel like I'm on my own in terms of NHS help if it happens again - but I know Mr. C can help me if I can just find the money. One good thing with my new job is that I get BUPA cover and whilst I know they don't usually cover pre existing for individuals, it can be different with company cover. So I'm definitely going to find out if I can continue to see him at Optegra with that.

Meanwhile I just hope and pray that the retinopathy leaves me alone now. I do want another baby and would probably have got pregnant again by now if this hadn't happened. As it is I'm hoping I'll be ok to risk it next year. From what I've read, most of the time if the woman has been treated and stabilised she will be ok but there is always the risk it will flare up again.

 

[Unbeliever]

Well I hope so too of course. I think it is quite common for one eye to be affected more than the other. it was only my left eye for a ime. Now there is still some room left for laser in the right eye which has never been as badly affected as the left. others say the same.

Having youth on your side is a plus too.

Really - how does that work? I had heard that the younger the patient the more aggressively the new vessels can grow, as its a faulty correction mechanism so presumably stronger in a younger body?
So I always thought for once my youth was a disadvantage.
Would be interested to hear how youth is beneficial

Thanks

Just seen this sorry. I was just quoting what was said to me in my early days of diagnosis . Not that I was young of course - but that they were used to treating much older people with the disease and were totally thrown by the speed with which it progressed. I was referred yo the hospital before annual screening was introduced and my GP mistakenly thought he could see something on the macula through his little spyglass. The hospital found nothing after several checkups but when my bgs were brought down overnight i suffered a massive bleed.
Noone could believe it. Nor could hey believe m lack of response to laser.They old me hat my "youth" obviously a comparative term should have ensured a beer response.
I think they may have really meant "young" in erms of my diabetes. I have howvwer beeen told that I probably had it all my adult life so I suppose i was more like a T1 But there again I had only the slightest race of retinal changes on diagnosis.
I know what you mean, very much as in cancer sufferers he cells multiply more quickly in the young because heir metabolism works more quickly.
I truly don't believe they know and are sill learning but several doctors assured me that , being otherwise in good health should
help me to fight his disease. Maybe it has - its difficul to know.

At least having youth on your side means hat you have more ime for hem to come up with a cure.
I believe that there is much more o learn about PDR . Perhaps some weakness which does not show in the screening.
The whole thing is still in its infancy.