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Do you blame yourself for complications? Dealing with guilt.

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the_anticarb

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How many of those with complications blame themselves and if so how do you deal with the guilt?
I will feel guilty until the day I die as I neglected my health as a teen and young adult and now it is catching up with me. I look back at all the times I was out of control/ate the wrong food/did not take my medication and can't believe I did that to myself, but I did have eating disorders /diabulimia sort of thing and although I knew the risks logically somehow I couldn't or wouldn't change my behaviour.
I'm sure I'm not the only diabetic to go through this. It's the cruellest disease (well one of them ) as by the time you realise you have done the damage it may be too late. Now I don't know if I can have another baby due to my retinopathy, no one is saying I definitely can't but I don't know if I want to risk it and go blind.
Anyway I feel pretty bad that I didn't take more care when younger. It's making me depressed at what should be a happy time in my life, but it's just this constant dark cloud on the horizon. Do you ever get over the guilt?
 
Re: Do you blame yourself for complications? Dealing with gu


I was diagnosed at the age of 11. Like all youngsters and teenagers, I didn't do what I was told. That isn't because I was diabetic, it's a simple fact that at that age I knew best. Now, some 35 years on, I'm suffering some pretty nasty complications. But I don't look back and try to add to them by blaming myself. I ate sweets - like my mates, I drank quite a lot as I got older - like my mates and I settled down and had kids - like my mates. I was normal, but diabetic.
Sometimes I do wonder if I would be suffering less from the complications but, in reality, I also know many diabetics who stick rigidly to the rules and have done throughout their lives with diabetes. Some of them have lost limbs or have died, yet they did nothing wrong.
What I'm trying to say is that complications don't always hit those of us who strayed from the path, nor do they avoid those who do things by the book. In many cases is is just a matter of luck, or bad luck. It can get you, or it can miss you. Don't beat yourself up over it - it's just the way this thing works.
Regards,
 
Re: Do you blame yourself for complications? Dealing with gu

Yes during my research into retinopathy I've heard that with poor control it develops after apx 15 years and with good control apx 20 years, obv these are averages but this means that for the average diabetic being 'good' will get you only a 5 year grace. Which means that someone diagnosed at the age of 10 who is 'good' and some one diagnosed at the age of 15 who is 'bad' will be even stevens by the age of 30 or over.

I wonder what percentage of young diabetics especially teenagers are good, i reckon for every compliant young diabetic there is one rebel.

Its a bit like smokers who get lung cancer or emphesyma, no one thinks it will happen to them until it does and its too late and then you feel really stupid. Only with smoking you can stop and return to health if you stop in time whereas with diabetes you can't really improve your health too much just stop the progression I guess.

I am just a little bitter cos it's only after I started to take care of myself that my retinopathy got worse, due to rapid tightening of control /pregnancy but hey if that's the way it works then there's not a lot I can do about it.


I will always blame myself a little though for being completely irresponsible for most of my diabetic career up to age 32 when I got the wake up call.
 
Re: Do you blame yourself for complications? Dealing with gu

I totally blame myself. I was diagnosed when I was 5 and during the ages of 18 and 25 I really didnt look after myself. Like many young girls I had an eating disorder and would use the lack of insulin in my body as a tool to loose weight. The past two years my control has been good with a HbA1c of between 6 and 7%. Yet in november I was diagnosed with nephrotic syndrome and last month admitted to hospital with acute renal failure along with all the other problems that go along with diabetes. I am 31yrs old with no kids or partner and feel pretty lousey. I dont see things getting better even though I'm told they will. Of course I feel guilty and stupid but ironically all those years trying to be slim I am now so overloaded with fluid that I look like the michelin man. I have no idea how to deal with the quilt and I dont think I ever will.

P.s Having a bit of a bad day, sorry
 
Re: Do you blame yourself for complications? Dealing with gu

anticarb
2 points
First
If you want another baby, I suggest you read everything you can by Dr. Lois Jovanovic. She specialises in the care of mothers and babies and is a T1 herself.
Secondly. Retinopathy in well controlled diabetes.
If you accept HbA1c of around 7% as good control, you may get retinopathy after 20 years. However Dr. R. Bernstein has been T1 since he was 12.Now in his 70s, he is complication free. He believes that an HbA1c in the 5s is too high.
I think that retinopathy is seen in non-diabetics who run high blood sugars a lot too. It's to do with the damage done to the retinal blood vessels by circulating glucose not specifically to a diagnosis of Diabetes. So if you keep circulating blood sugar RIGHT DOWN, you shouldn't develop retinopathy. Incidentally improving control significantly can improve retina health. Retinopathy is at least, in part reversible. The damage done by laser treatment is permanent.
Hana
 
Re: Do you blame yourself for complications? Dealing with gu


Hi Hana. Tha'ts interesting. i don't understand what you mean about non diabetics who run high blood sugars - surely a non diabetic produces insulin which bringts their blood sugar down, so if their blood sugars were high they'd be diabetic by definition? Or do you mean that someone who isn't diabetic but eats a lot of sugar, so presumably there is a slight time lag before they produce the insulin to bring their sugars down?
I'm very interested in the difference in health, particularly retinopathy, between two diabetics.
Diabetic A eats the standard high carb diet as recommended by diabetes uk but injects the right amount of insulin to keep their blood sugars to target.
Diabetic B eats a low carb diet so keeps their sugars to target but doesn't need to inject a lot of insulin.

Would there be a difference in the progression of retinopathy in either of these people, IF HBA1C IS THE SAME?

After having done both approaches to managing the conditoin myself, and acheived low hba1cs with both, I'm returning to a low carb approach predominantly because although I can keep my sugars low on a high carb regime by injecting insulin the price I pay of a) constantly fearing I'll go hypo and b) getting fat is becoming too high (specially b). But if there are additonal benefits to my retinas of following a low carb diet then I am very interested in finding out about this.
 
Re: Do you blame yourself for complications? Dealing with gu


Hi Sugar pie I am really sorry to hear that. You are not alone, I think it is incredibly difficult to manage diabetes even as a mature and responsible adult never mind being a teenager/young person. My approach was to basically pretend I didn't have diabetes. I still injected, but didn't test so there was no balancing of insulin to carbs at all, and I was constantly running high. I was diagnosed at 15 and used this approach UNTIL THE AGE OF 32 when I came back from a carb laden holiday to find a letter from the eye hospital saying i needed to see the consultant due to maculopathy. I too had the diabulimia/under inject to lose weight thing. Its incredibly difficult to change your behaviour when you can't see the consequences yet. I knew all the time what I was doing was wrong, but somehow I couldn't change my behaviour, it was too ingrained and I couldn't make myself take it seriously.

Anyway after my wake up call i was a lot better, but still had some lapses, then I got pregnant by accident when hba1c was 9.6 and had to really tighten up to save the baby. Baby was fine thankfully, but my eyes took the hit.

Since my son's birth I have been mainly hba1c 6-7 but had one major lapse on holiday this year when I started pigging out 'because I'm on holiday' but then found I couldn't stop when I came back and I was out of control for four weeks. I'm hoping those four weeks haven't done too much damage, but lets face it it's the 18 years before that have done the damage.

Now I'm hoping and praying that my eyes are not too damaged to risk another pregnancy.

Anyway I'm really sorry to hear about your nephrotic syndrome, is it reversible? What have they said?

Even though you have not been great with your control when young at the end of the day it's not your fault or my fault that we are diabetic, and from what I've read the complications get most people after a while it's just a question of when. The biggest factor affecting whether someone will get complications is not blood sugar control, but length of time with diabetes. Good blood sugars can sometimes only delay the inevitable. After about 20 years most people with diabetes are getting complications.
 
Re: Do you blame yourself for complications? Dealing with gu

i'm a T1 12 years this may. was never taught to match my insulin with carbs...i've always kinda 'guessed' it! was given doses and i would just kind of eat stuff...was told to always include starchy carbs in meals. A1c always been good, but i've only recently realised this is because i swing from hypo to hyper daily. maybe not daily, some days i manage to keep between 4-8. others 2-18!

i have always had an 'issue' with weight (although since gaining 5 stone in each of my pregnancies, in particular the last one, where i was HUGE, - i realise i was always an average weight, i just thought i was big) - so through the years i 'under-injected' every now & again -no real problems with that ay? no lightening bolt came out of the sky! (the storms come later i now realise) i would wake up to it and always get myself on the straight and narrow quickly, and these phases didn't show in A1c. only recently am i thinking all the double figures are coming back to haunt me.

my 2 full-term pregnancies have been the best control i've ever had, A1c's in 5's. had 2 miscarriages and think i was in denial about BS causing them. after i had my baby girl in dec 2009, my eye screening in april 2010 showed background retinopathy, i crapped myself, thinking,i've caused this. i kinda ignored it hoping it would go away, but last years screening showed same. i'm v worried about what shows up this year as one of my eyes gets quite blurry.

i'm always completely frazzled and swing from 2 opinions: i'm older, bit o/weight still & quite unfit (trying to change that with lots of spin classes!!) and have a 2 yr old that DOESN'T sleep yaaawwwwwn. OR...i've caused myself damage over the years and my heart isn't working properly because it's been crystallised in sugar (trying to make light, but sometimes really scares me!). (oh and indigestion = gastroparesis, a numb foot from when i sit on it or wear heels = neuropathy. as you can see i am one of life's worriers!)

it's only really recently that i've realised what a life sentence it is to have diabetes. i know many will jump to disagree but i have NEVER felt this way before, i was never 'warned' properly by the diabetes nurses/specialists...they've always just looked at ok A1c's and sent me on my merry way, so this was good enough for me. now it's biting me on the bottom a bit i feel powerless as to previous control - i wish i could go back & tell myself there would be consequences to 'sometimes ok' and 'sometimes erratic' control.

so yes, i 'blame' myself, for complications that maybe starting to surface (they also may just be a figment of my overactive hypochondria which has recently exploded), the retinopathy- and for losing 2 very much longed for babies.

i'm trying to change my way of thinking/dealing with diabetes. like using a low carb diet (it conflicts so with what i was originally taught) and am learning alot from this forum. i know we can halt complications with tight control, but even that is a daily struggle. i'm hoping this forum will light the way forward onto the next part of diabetic life. it certainly beats the care & advice i've EVER had from DSN's/specialists etc. we are certainly not alone in the world are we.

that's enough negativity from me. on a lighter note, it's friday! which means a nice bottle of red wine will be opened after kids are in bed! that thought will keep me goin til 9pm!!!!!
 
Re: Do you blame yourself for complications? Dealing with gu

...and when God made red wine, he forgot to put any carbs in! Hurray!
 
Re: Do you blame yourself for complications? Dealing with gu

When I was diagnosed {acidentally} I was slim as I had always been,had followed a Gi diet for years. Just before the introduction of annual retinal screening and a month or so after diagnosis I had my first annual review. Metformin had made my levels RISE . as well as making me very ill or maybe because of making me very ill. I was advised to eat more starchy carbs to hep with the sickness. The doctor looked at my eyes through his little lens , thought he could see something on the macular and referred me to the eye clinic.
Whe I had my firs appointment a few monhs later I was told there were only signs of background reinopathy.
My levels continued to rise and I was put evenually give rosiglitazone before the great unmasking and i also cotinued to attend the eye clinic.
Anbout 3 months after rosiglitazone had been prescribedand eigheen months after diagnosis and several visits to the eye clinic . on the day they planned to discharge me, it was discovered that I had sufffered a massive bleed in my eye.
I had just been taken off rosiglitazone at my own insistence and started on glimepiriide.
I had my first laser reatment about 6weeks later and another a few weeks after that and my left eye and has never recovered and never will.
I was later referred to a consultant who would not use laser util he was sure there was not too much fluid present but too late as i had suffered macular oedema. More tha four years down the line I am still being treated for this condition .
In some ways it has been a good hing because the eye people helped me to be seen by a diabetes consultant . If I hadnt done that I might well have been suffering other complications by now.I have macular oedema in both eyes now although my levels have reduced considerably . Any improvements to my eyes is short lived. I suppose I average a visit and various procedures every 3 weeks . Jus recently I have bee there weekly.
I have discovered the hard way that all the advice and medication I was given were wrong for me and have now reverted to my former diet but with lowe r carbs and have been able to stop taking much of the medication I was given for the first three years.
My health has been damaged in many ways. So no , I don't blame myself. neither do I blame anyone else . If anything or anyone I blame the guidelines given to HCPs and those who issued them.
I have learnt not to trust anyone except myself with my diabetes.
There is o point in blaming yourself or anyone else. just learn from it. This forum hopefully stops many especially the ewly diagnosed from learning the hard way.
 
Re: Do you blame yourself for complications? Dealing with gu

why oh why do all the medical people 'in the know' send us away feeling happy that we're controlling things just fine, when their view of 'just fine' is actually way under 'just fine'? with a bit more knowledge, vigilance & support i'm absolutely sure we could all be helped to be more aware of the consequences that 'sometimes erratic' control brings. do they think it's too hard for us to take on board? it's not as hard as the realisation that hits years later.
 
Re: Do you blame yourself for complications? Dealing with gu


I think they don't want to admit just how difficult it is for the average person to manage diabetes successfully. I consider myself a reasonably intelligent person, university educated etc but still I did not realise the significance of limiting carbs (all carbs not just sugar) until I joined this forum and this was after 17 years as a diabetic.

I've found very few health care professionals who 'get' how hard diabetes is to manage. There is a huge psychological component to managing it, it's not just about knowing the facts but it's a lifelong psychological commitment to doing all the right things, day in day out, that is very difficult for a lot of people.

When I was first put on insulin (I was on oral meds first, due to MODY) I wasn't explained how to carb count or carb match, just told here's your insulin, take this dose and away you go. I ended up going hypo a lot, and as a 19 year old at university I had better things to do than worry about hypo. So I took myself off the insulin and put myself back onto metformin, which was insufficient, but I had no support from anyone although I acknowledge at the end of the day it was my responsibility perhaps if someone had helped me a little more I wouldn't have wanted to put my head in the sand like I did.

I am seriously considering getting some counselling to help me finally come to terms with the fact that a) I have a lifelong chronic disease and b) I've done some damage to myself through not managing it. I was talking to someone about living in to old age and I found myself thinking I do not want to live past 70 with this awful disease hanging over me and all the complicationsI may face. That's a terrible thing for me to think but it's true - I feel my body is not equipped to see me through to old age and i don't want a life full of complications and pain when I'm older.

That's if I even get to 70 of course.

Anyway, sorry for the ramblings. Going through an introspective period with regards my diabetes at the moment due to the issue with wanting a second child (see other post).
 
Re: Do you blame yourself for complications? Dealing with gu

I Understand what you mean about living to old age anti-carb although you might consider I am there already! I can cope for the moment but need to exercise regularly and watch my diet very carefully. The problems wih my vision make both hese hings very difficult at times and I just know that my life would be unbearable were I o lose my sight completely ,

If I had to be dependednt upon others my diabetes control would just be lost. I have already had some experience of this.
I would be at the mercy of the professionals which would probably mean more complicaions and more being pushed around like a parcel/.

Also I still have people dependent upon me for support.
On the positive side I do think there are improved treatments in the pipelne for diabetic eye condiions - I have seen progress since I was first diagnosed . In fact I would say hat had I been diagnosed earlier I might welll be blid now.

Of course any intelligent person must consider these things but we must remember that progress is being made on all fronts
although the results sometimes take a while o percolae through to us.
 
Re: Do you blame yourself for complications? Dealing with gu

feel exactly the same AC..it's only recently i've started getting 'scared' by the future. i also can't see me getting to 'old age' and if i do, what will my health be like? it's a really depressing thought.

how old is your mum...how is she coping? my mum is 61 & has had it 37 years but hasn't really been that aware of how things are. she is supposedly in good health according to her consultant, but she is quite overweight (but has always been) and is putting on weight lately due to being very insulin resistant. she has 120u of levimir daily and around 100u of novorapid. i'm v worried about her and consequently about me in the future! she takes a whole lotta pills for various stuff (high bp/cholesterol/thyroid...and more besides)

i too have been wondering about counselling recently, specifically in regards to this 'condition' - i have always thought i'd handled diagnosis and life since quite well, its only recently i've been aware of being angry (? there's a better word for it but can't think of it right now!) about having this for life. i've never questioned it before, just got on with it (er, what choice is there!?).

i'm sure we'll eventually rise above this...we have to in order to get on with life and enjoy it with our children. today is the first day of the rest of our lives (mouthful but it's a saying my lovely grandad used to spout!) and we are to a certain extent in control of how we live it. we can take some control over diabetes, it's when we don't have it that problems start eh? if only i'd have realised this sooner (bet you feel same?) but hey, we realise it right now, so no more lapses in control for us!
 
Re: Do you blame yourself for complications? Dealing with gu

Hi Weezer - my mum is in good health considering she's been diabetic 50 years now...but she has always been compliant. Unlike me..the rebel! Actually i was thinking about it and i don't think i was a rebel so much as just incapable of looking after myself when i was younger. I work in HR and a lot of time we talk about 'will' versus 'skill' when discussing employee performance. Well its the same with this. I had a lot of emotional problems when i was younger/ eating disorders etc and was a mess, no way could i look after the diabetes on top of that too. I'm older now and able to make better choices.

Only recently though have i really understood that i have an illness, I can't produce a certain hormone my body needs to keep it healthy, I have a defective body. That makes me very sad. If my eyes can recover, I think I can get over it all, and learn to live with it, but i'll always be looking over my shoulder for the retinopathy to come back.

What makes me even sadder is that I have the monogenic form of diabetes (Mody) which means it is a single, dominant faulty gene. This means my children will have a 50% chance of inheriting 'the curse' (my mum, brother and I have it). I'd hate to think of my little boy struggling as I have, although he won't get it til he's older, probably teenage years which is the worst time. I remember my mum crying her eyes out when I was diagnosed, and I didn't understand then what all the fuss was about. i was only 15 and quite enjoyed all the attention and fuss being made of me when i was diagnosed, no way did i understand what a life sentence it would be. This was back in the 90s when it was all very much about cutting out sugary/'nice' foods. I did this, as instructed to by my parents and everyone around me, for a few months and then i remember one time having some chocolates. nothing bad happened. hey i can get away with this I thought - and there started my diabetes rebellion.
I just don't want my son to go through all that and hope and pray he, and any other future children, won't. But with a 50% chance if i have 2 kids then at least one of them is likely to have it if not both.
So this **** disease not only ruining my life but potentially my children's too.
But hey i can't wallow in self pity gotta just pick myself up and get on with it i suppose.
 
Re: Do you blame yourself for complications? Dealing with gu

and don't forget you will be the best role model should you pass it on, you know what your pitfall was so you can make sure they are aware that yes, you can spike your sugars and no lightning bolt will come out of the sky, but you have a real life example of how it creeps up on you - my mum didn't have the knowledge to teach me anything about diabetes because she just did what she was told to do - whereas we today like the info to make our decisions. that knowledge is power! and you can surround your kids with knowledge and facts about what happens when you don't take control of diabetes. i wish someone could've told me...rather than sending me away and hoping for the best. i think if we knew then what we know now we'd have been a bit more cautious - i.e. that high sugars are very dangerous, not at the time but in a cumulative effect.

you can wallow...but it won't last long, i think counselling's a great idea - you can't discuss it with anyone in your normal circle, anyone worth their salt would listen but then tell you to dust yourself off & carry on. a counsellor would be able to help you work through all the avenues you want to wander down. can you ask your clinic/consultant, they can refer if they think someone is struggling with the 'mental' side of diabetes.
 
Re: Do you blame yourself for complications? Dealing with gu

I've booked in to see a counseller privately tomorrow Weezer. I am having a whole host of negative emotions - anger, fear, guilt, sadness, grief at the loss of a healthy body/eye..... I just found out my appointment at the eye hospital next week has been postponed to the week after, I know only a week but a long time when you are worried about something...just adding to my woes really!

I can't go on like this, and don't want it to affect my relationship with my partner - I alternate between thinking he's not sympathetic enough and then I worry that I'm bugging him by going on about it- so I'm seeing someone tomorrow hope it will help .

I just feel like the past 20 years has caught up with me, it is truly 'judgement day.'
 
Re: Do you blame yourself for complications? Dealing with gu

best of luck...i hope your counsellor is someone you connect with. if that happens, you can go far. not surprising you feel that way, we are made to feel like we can have this 'normal' life like anyone else, and i know to a certain extent we can, but we always have to stop and consider things. it's wearing! i've just packed for a weekend away with some girly friends, and my main priorities are insulin...food...spare cartridges, tester, extra tubs of testing strips, etc etc. oh, don't forget the lucozade! i won't be drinking with everyone else (taking a good book! ha) but that's my priority, not the booze, makeup & clothes like everyone elses priority is. i know this isn't such a great hardship really, but it's when it hits you and you realise you're not the same as everyone else (when you've been lulled into thinking you are).

it's quite lonely really, i know our partners can be super supportive, but they don't have to 'deal' with it daily and with the things that go wrong. know exactly what you mean, got a fab hubby, but there's only so much bleating on he can take. that's what this forum's for!!! so go for it girl, there are lots of ears on here to listen and alot of intelligent suggestions for dilemmas/problems.

you are right, it is only a week more, know it feels longer (ha, my scan which i thought was monday is in fact a week on monday...it's gonna feel like a month! i'm so paranoid everythings stopped growing, but got no choice. will have to wait with you!)

don't forget what you've said before - you can get your eye done & start from day 1, where you keep diabetes at the top of the list and make sure you hold back other problems as much as humanly possible. it gives me so much encouragement that there are others on here who have had problems but the positive effect of those problems, is that they've pushed those individuals into a new level of vigilance and control.

hope you get on well with counsellor tomorrow and can work through all that negative emotion in your sessions. they are there for you alone, and you can use a whole session up talking about the tiniest thing (which you didn't realise was affecting you as much as it did til you start talking about it!). i hope this dark feeling is a fleeting one, and as someone else said, that light at the end of the tunnel isn't the train headlights, but the daylight you're heading towards xxx
 
Re: Do you blame yourself for complications? Dealing with gu

Update, saw the counseller today and it was really good to just talk about it all to someone. I don't think I ever fully accepted my diabetes until now, so all the emotions I should have gone through in the beginning, like coming to terms with the fact that I have this condition for life, are coming out now.
She said I need to make friends with my diabetes -at the moment it is still 'the enemy' who i feel has won.
I think this counselling will be very good for me and urge anyone with similar issues about acceptance/guilt to consider it.
 
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