Hi laura I totally understand where ur coming from I am exactly the same as u it is something I thought I was alone with I have undertaken all sorts of counselling to no avail I stop the insulin and binge then drink litres of fizzy sugary drinks till im almost comatosed then I panic. Over the past few days I have been trying to reduce really high sugars with two hourly shots its scared me this time but I do feel the damage is done maybe we should both try harder
Diabulimia
- Thread starter Laura1976
- Start Date
Hi to everyone.....
Im so so glad that I plucked up the courage to post on this site. You cannot begin to understand my relief that I am not the only one...I agree that this subject slould be more widely recognised in the medical world. Maybe then we would be able to get help. Id like to thank those of you who shared your personal struggles and provided helpdul links for me to view. I thibk I might try rhe low carb diet and see how this goes....but wont I still gain weight with this as my sugars wont be as high? I know this should not matter to me and I pray that it would not matter to me...but it does. I keep saying to myself "for gods sake laura get a bloody grip". Im so angry at myself. I gave tried taking some of my shots over the last ciyple of days but then panicked and drank loads of lucozade. .. I then feel relieved that I'm back to 'normal' ...how warped is that. I definitely have a rational sude and a completely bloody unrational stupid side who always seems to win out. Then I still always worry about the damage I'm doing to myself. I sometimes wish I could be committed somewhere and forced to do it....what a case I am :|:|
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Im so so glad that I plucked up the courage to post on this site. You cannot begin to understand my relief that I am not the only one...I agree that this subject slould be more widely recognised in the medical world. Maybe then we would be able to get help. Id like to thank those of you who shared your personal struggles and provided helpdul links for me to view. I thibk I might try rhe low carb diet and see how this goes....but wont I still gain weight with this as my sugars wont be as high? I know this should not matter to me and I pray that it would not matter to me...but it does. I keep saying to myself "for gods sake laura get a bloody grip". Im so angry at myself. I gave tried taking some of my shots over the last ciyple of days but then panicked and drank loads of lucozade. .. I then feel relieved that I'm back to 'normal' ...how warped is that. I definitely have a rational sude and a completely bloody unrational stupid side who always seems to win out. Then I still always worry about the damage I'm doing to myself. I sometimes wish I could be committed somewhere and forced to do it....what a case I am :|:|
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Just sren your post debz and am sorry counselling hasnt helped...I feel that it wouldnt help me as I dont feel theres any u derlying readon for my not taking my insulin other than to prevent me gaining weight. ...xxx
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Solestar
Active Member
- Messages
- 29
- Type of diabetes
- Type 1
- Treatment type
- Insulin
- Dislikes
- Ignorance, apathy and Cretinopathy (a term coined by lowcarbdibetic.co.uk) which is a common diabetes related condition where people who should know better (Healthcare professionals and Diabetes charities) advise diabetics to consume high carbohydrate/sugar food.
I really feel for you, Laura, because I know your thought process so well. I was always horrified of the thought of gaining weight (such a no-no in today's culture of the body beautiful) and I was terrified of going hypo (one of the worst feelings in the world). I also found it difficult to understand why when some people could manage their condition so well, I was constantly mis-managing mine and had this never ending internal struggle going on inside my head. Sometimes, I look at the big picture and it's just so huge, scary and overwhelming and like I said before, I still don't have perfect control. But, instead, I try and take it on a day by day, sometimes an hour by hour approach. If I mess up, I accept I've done so and move on and try again.
With regards to the low carb diet, there's a lot of controversy about it in the Diabetic world but the more I read about it and the more I try it myself, the more convinced i'm becoming, as long as you do it properly. Educate yourself about your condition, how food and insulin affect your body. Low carbing should not make you gain wet, in fact, low carb diets have been found to be successful in weight loss programmes. Carbohydrates are the main source of energy for the body and when you consume them, your blood glucose rises according to the type of carbohydrate. By reducing the your carb intake, you reduce the rise in blood glucose levels after meals, therefore requiring less insulin. But you should still take your long acting insulin, as this is not food dependent and is necessary for maintaining your basic metabolism. Here's an interesting infographic:
http://www.factfixx.com/wp-content/uplo ... ng_You.png
Also, look at http://www.amazon.co.uk/Dr-Bernsteins-D ... s+solution
And if you're on Facebook, have a look at this page. https://www.facebook.com/LchfDiabetes?fref=ts
There's a wealth of information out there and you sound like you know what you should and shouldn't be doing. Sometimes, too much intelligence is not always a good thing! ;-) Also, have you attended a DAFNE (Dose Adjustment for Normal Eating) course. run by your local health care provider. I went on the course a few years ago and it really helped me to understand Diabetes a lot and the impact of certain foods on my glucose levels.
On a final note, I think i'm going mad. Just got up to make myself a coffee and realise i'd already made it. I have no recollection! Go figure, eh!
Best of luck, Laura
Julie
With regards to the low carb diet, there's a lot of controversy about it in the Diabetic world but the more I read about it and the more I try it myself, the more convinced i'm becoming, as long as you do it properly. Educate yourself about your condition, how food and insulin affect your body. Low carbing should not make you gain wet, in fact, low carb diets have been found to be successful in weight loss programmes. Carbohydrates are the main source of energy for the body and when you consume them, your blood glucose rises according to the type of carbohydrate. By reducing the your carb intake, you reduce the rise in blood glucose levels after meals, therefore requiring less insulin. But you should still take your long acting insulin, as this is not food dependent and is necessary for maintaining your basic metabolism. Here's an interesting infographic:
http://www.factfixx.com/wp-content/uplo ... ng_You.png
Also, look at http://www.amazon.co.uk/Dr-Bernsteins-D ... s+solution
And if you're on Facebook, have a look at this page. https://www.facebook.com/LchfDiabetes?fref=ts
There's a wealth of information out there and you sound like you know what you should and shouldn't be doing. Sometimes, too much intelligence is not always a good thing! ;-) Also, have you attended a DAFNE (Dose Adjustment for Normal Eating) course. run by your local health care provider. I went on the course a few years ago and it really helped me to understand Diabetes a lot and the impact of certain foods on my glucose levels.
On a final note, I think i'm going mad. Just got up to make myself a coffee and realise i'd already made it. I have no recollection! Go figure, eh!
Best of luck, Laura
Julie
Thanks julie. You are so right. I am gonna take things a day at a time and request to attend the next dafne course as it certainly cant hurt can it.... I'm going to make myself a cuppa now....my first one lil xxx
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Hi Laura
I can relate to your post. I had diabulimia since age 20 to 35. I even had it when I found out I was pregnant - luckily the baby was ok.
I have now got complications - advanced retinopathy which I would not wish on my worst enemy.
It's taken that to get me to the point where I'd rather be fat and take all the insulin I need than be thin, underinject and eat whatever I like.
But until the complications happened I lived in an ostrich world where I believed nothing bad would ever happen to me. I wanted to get help but unfortunately the vast majority of medical professionals do not understand and just mark you down as a non compliant patient and wash their hands of you.
I remember the mental battle of not wanting to risk getting fat so I would pig out and underinject or not inject. Didn't help that I comfort ate too / binge ate so you can see it was an accident waiting to happen really when I got complications.
Now I am quite fat but basically it was a choice of be fat or go blind and being fat won.
I'd do anything to turn back the clock as I'm now pregnant with my second child, and just had a big retinal bleed 3 weeks before I'm due to give birth and I'm not looking forward to the birth anymore - feels like diabetes ruins everything.
You've done the right thing by speaking out, as eating disorders love to live in the shadows. A lot of diabetics particularly (but not exclusively) young female ones have this problem, and unfortunately a lot of them will get complications before they get better. I hope it is not too late for you.
There is a diabulimia group on the net for people with this problem I forget the name of it but if you google it you may find it. They may be able to offer more help
Wishing you the best of luck
I can relate to your post. I had diabulimia since age 20 to 35. I even had it when I found out I was pregnant - luckily the baby was ok.
I have now got complications - advanced retinopathy which I would not wish on my worst enemy.
It's taken that to get me to the point where I'd rather be fat and take all the insulin I need than be thin, underinject and eat whatever I like.
But until the complications happened I lived in an ostrich world where I believed nothing bad would ever happen to me. I wanted to get help but unfortunately the vast majority of medical professionals do not understand and just mark you down as a non compliant patient and wash their hands of you.
I remember the mental battle of not wanting to risk getting fat so I would pig out and underinject or not inject. Didn't help that I comfort ate too / binge ate so you can see it was an accident waiting to happen really when I got complications.
Now I am quite fat but basically it was a choice of be fat or go blind and being fat won.
I'd do anything to turn back the clock as I'm now pregnant with my second child, and just had a big retinal bleed 3 weeks before I'm due to give birth and I'm not looking forward to the birth anymore - feels like diabetes ruins everything.
You've done the right thing by speaking out, as eating disorders love to live in the shadows. A lot of diabetics particularly (but not exclusively) young female ones have this problem, and unfortunately a lot of them will get complications before they get better. I hope it is not too late for you.
There is a diabulimia group on the net for people with this problem I forget the name of it but if you google it you may find it. They may be able to offer more help
Wishing you the best of luck
Thank you anti xarb for telling me your story...it means so much to me that other sufferers open up about their experiences. I'm so embarrassed about what I do...and still struggle despite suffering with a list of complications which are just getting steadily worse. I really hope I can get myself better....thankyou so so much for your support xx
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Hi Laura, I'm so sorry you're feeling this way. I understand as I'm going through the same thing (although not conscious of trying to lose weight, I actually don't know why I struggle so much but I do the same thing- only taking long acting insulin until I have ketones and then taking short acting to correct it) and if there's one thing I can tell you having admitted this to my consultant a few years back, it's that they really don't know what to do about this problem in diabetes clinics from my experience. Really it's a mental health issue, which could be the result of anything in your life including the diagnosis itself, or could be to do with needle phobia or an eating disorder that you may well have suffered with regardless of the diabetes. Either way, the best people to help are therapists. The type of therapist depends on what works for you- I hear Cognitive Behavioural Therapy is good for people who find they suffer with negative thought processes that are hard to control (eg thinking "I'm fat, I need to lose weight", although that wasn't my preference. I found hypnotherapy worked wonders for me in the short term (but other issues from my childhood mean I've ended up in drama therapy after returning to old habits)- this is great for relaxing and encouraging your subconscious to stop being so negative. Awareness is the key- if you can work out why you do it, that's half the battle. Ask yourself if your mood is linked in with it- are you more likely to do your injection when you're in a good mood for example?
Do push for help though, it's very difficult to go through it alone!
Wishing you the best!
Do push for help though, it's very difficult to go through it alone!
Wishing you the best!
Oops I only saw the first page of this thread and just realised there was more! Apologies to anyone if I've repeated you! l'm genuinely shocked at how many people are saying the same things I feel! I thought I must just be a **** patient and that it must be really really rare! I think what makes it especially hard is when you can't think of a reason for it- and you get frustrated with yourself because you understand that it's dangerous but can't stop yourself. I think that's the sign that you need help from a mental health professional, but know it IS hard to find the right one. I've been saying I wish I could be committed for years because I feel so out of control I've got DWED on Facebook, I hope that this group helps to get this problem better recognised in the medical profession.
I've got DWED on Facebook, I hope that this group helps to get this problem better recognised in the medical profession.I just wanted to add - I think a lot of it can be to do with rejecting the actual diagnosis at all. I remember I couldn't handle being 'a diabetic' and unfortunately with this illness it is very easy to just pretend you don't have it. That's what I did. Who wants to be different and having to do all these tests and eat different foods and go hypo all the time, particularly when you are young and want to just be like everyone else.
Even now I still feel resentment towards my illness. I can resent other people for not having diabetes. That's why this forum is so good as you can connect with other sufferers but before I found it, I was the only (young) diabetic I knew and I thought I was the only bad patient in the world. I remember being at the diabetes clinic once and this girl was talking to the nurse about how to get her dose right and was clearly completely accepting her condition and doing what she needed to do, and I felt so bad that I could not be like that.
Now, three years after retinopathy really started ruining my life (the diabetes was nothing compared to this!) I'm basically far too scared of damaging my sight to NOT tow the line. Despite the fact that my hba1c has been around 7 or lower for the past three years, my condition has still progressed and I nearly lost my job because of it, and nearly didn't have another baby (I decided to take the risk and have another baby, well as I mentioned earlier I've just had a retinal bleed in late pregnancy which is really not a good time! - not that there ever is). It takes a while for retinopathy to switch off - pregnancy doesn't help. I'm so afraid of it haunting and hounding me forever now and all because my eyes are damaged from years of abuse earlier in my life. I try not to blame myself though, as I had an eating disorder, was young and immature and had psychological problems in the past I just wasn't capable of taking care of myself. ALso I don't think the diabetes care given to me in my youth was very good, I was just told to take x amount of insulin with no regards to carb counting so I went hypo all the time whenever I tried to take control.
What I have found though is that it the rare HCP who can understand when someone is underdosing their insulin. Most of them just think if you won't help yourself they can't help you either. A lot of counsellers don't understand either, it takes a very good mental health professional to really get you to the place where you can stop. Or the realisation that you will end up blind/amputee etc.
I had loads of counselling etc over the years and didn't really do that much for me. But hopefully this approach may work for other people and the OP.
Even now I still feel resentment towards my illness. I can resent other people for not having diabetes. That's why this forum is so good as you can connect with other sufferers but before I found it, I was the only (young) diabetic I knew and I thought I was the only bad patient in the world. I remember being at the diabetes clinic once and this girl was talking to the nurse about how to get her dose right and was clearly completely accepting her condition and doing what she needed to do, and I felt so bad that I could not be like that.
Now, three years after retinopathy really started ruining my life (the diabetes was nothing compared to this!) I'm basically far too scared of damaging my sight to NOT tow the line. Despite the fact that my hba1c has been around 7 or lower for the past three years, my condition has still progressed and I nearly lost my job because of it, and nearly didn't have another baby (I decided to take the risk and have another baby, well as I mentioned earlier I've just had a retinal bleed in late pregnancy which is really not a good time! - not that there ever is). It takes a while for retinopathy to switch off - pregnancy doesn't help. I'm so afraid of it haunting and hounding me forever now and all because my eyes are damaged from years of abuse earlier in my life. I try not to blame myself though, as I had an eating disorder, was young and immature and had psychological problems in the past I just wasn't capable of taking care of myself. ALso I don't think the diabetes care given to me in my youth was very good, I was just told to take x amount of insulin with no regards to carb counting so I went hypo all the time whenever I tried to take control.
What I have found though is that it the rare HCP who can understand when someone is underdosing their insulin. Most of them just think if you won't help yourself they can't help you either. A lot of counsellers don't understand either, it takes a very good mental health professional to really get you to the place where you can stop. Or the realisation that you will end up blind/amputee etc.
I had loads of counselling etc over the years and didn't really do that much for me. But hopefully this approach may work for other people and the OP.
Thanks lilyfleur for your help. I am still really struggling and dont seem to be any further forward in my quest to be a controlled diabetic. I feel like ive kind of accepted the situation and its consequences which is absurd to me. I have an absolutely wonderful and supportive husband and a fantastic family and I feel so guilty for putting this ridiculous situation onto them. I am seeing my dsn tomorrow and will ask about other help I can get. He has been so nice and very understanding but as you have all said they are limited as to what they can do...in the end its down to me. Im so tired of having this constant battle with myself but ivw been this way for so long now I dont know hpw to be anyrhing else xx
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Hi Laura
You said you are already developing complications - what are these and how bad are they?
My personal experience was that even when I got background and pre proliferative retinopathy I still couldn't change my behaviour and still didn't think anything bad would happen. Then I got pregnant accidentally during a time when I'd stopped taking ANY insulin in order to lose weight. I wasn't eating any carbs either, but I should have at least been taking my background. Suddenly the baby's health/life was in jeopardy which really scared me as I realised I could have damaged the baby. My hba1c was around 10 at conception. I immediately started taking my insulin and got my hba1c down very fast which meant the baby was ok but I developed proliferative retinopathy during the pregnancy. I remember thinking that after the pregnancy I would go back to my old ways then realising that I'd used up all my 9 lives as my eyes were f*cked up.
My hba1c was stable ever since then (3 years ago) but sadly retinopathy once given the opportunity can take on a life of its own. When I was ready to conceive my second child I was told it had progressed, badly and that it would be a really bad idea to have another child. My left eye then deteriorated and without a vitrectomy op I would have gone blind. It was pretty much the worst experience I had ever had as the doctors tried to laser the eye but despite extensive lasering the disease still progressed and eventually I had a bleed. Bleeds are HORRIBLE, everywhere you look there is black stuff in your eye and it gets worse and worse every time you bleed.
I was in a real dilemma whetehr to have another baby but eventually was told I probably would be ok to conceive. So I did and I've just had another bleed at 36 weeks. It has cleared a little now but I'm petrified it will just happen again without warning. Laser does not always work.
So because of the eating disorder and not taking care of my diabetes when I was younger this is really marring my life now. Even though I have been well controlled for three years now!
Well I'm sure you've heard lots of horror stories over the years, and it can be hard to take them on board unless it is actually happening to you. I don't mean to scare you but just wanted to let you know how I had finally managed to control my diabetes. I'm still an erratic eater and always will be, I just make sure I take my insulin now even though the side effects of a) weight gain and b) hypos are hard to bear, they pale in comparison to retinopathy.
Hope you don't have to go down the route I did, please take care.
You said you are already developing complications - what are these and how bad are they?
My personal experience was that even when I got background and pre proliferative retinopathy I still couldn't change my behaviour and still didn't think anything bad would happen. Then I got pregnant accidentally during a time when I'd stopped taking ANY insulin in order to lose weight. I wasn't eating any carbs either, but I should have at least been taking my background. Suddenly the baby's health/life was in jeopardy which really scared me as I realised I could have damaged the baby. My hba1c was around 10 at conception. I immediately started taking my insulin and got my hba1c down very fast which meant the baby was ok but I developed proliferative retinopathy during the pregnancy. I remember thinking that after the pregnancy I would go back to my old ways then realising that I'd used up all my 9 lives as my eyes were f*cked up.
My hba1c was stable ever since then (3 years ago) but sadly retinopathy once given the opportunity can take on a life of its own. When I was ready to conceive my second child I was told it had progressed, badly and that it would be a really bad idea to have another child. My left eye then deteriorated and without a vitrectomy op I would have gone blind. It was pretty much the worst experience I had ever had as the doctors tried to laser the eye but despite extensive lasering the disease still progressed and eventually I had a bleed. Bleeds are HORRIBLE, everywhere you look there is black stuff in your eye and it gets worse and worse every time you bleed.
I was in a real dilemma whetehr to have another baby but eventually was told I probably would be ok to conceive. So I did and I've just had another bleed at 36 weeks. It has cleared a little now but I'm petrified it will just happen again without warning. Laser does not always work.
So because of the eating disorder and not taking care of my diabetes when I was younger this is really marring my life now. Even though I have been well controlled for three years now!
Well I'm sure you've heard lots of horror stories over the years, and it can be hard to take them on board unless it is actually happening to you. I don't mean to scare you but just wanted to let you know how I had finally managed to control my diabetes. I'm still an erratic eater and always will be, I just make sure I take my insulin now even though the side effects of a) weight gain and b) hypos are hard to bear, they pale in comparison to retinopathy.
Hope you don't have to go down the route I did, please take care.
Hi anticarb. I am really pleased that you have managed to get your diabetes on track and have been blessed with your children. I am sory that you have had to suffer retinopathy and bleeds as a result of your previous eating issues and not taking your insulin. Tbh I feel like an old woman and like I said earlier, despite complications I am still not further forward with my control. You wanted to know what complications I am suffering .(i will just list them)....here goes...
Ive had vitrectomies in both eyes
Neuropathy severely affecting my ability to walk.
My balance is severely impaired
I cannot climb stairs
My eyesight is affected
I have numb and painful feet
The muscles in my legs are wasting
I have no energy...ever
My kidney function is impaired
This is why I am so disgusted with myself....I cant stop despite sll this..and I'm only 37. I know it sounds dramatic but I feel like im just waiting for everything to be done so it will all be over as im so tired of the constant struggle I have with myself. Its like tge need to not be fat overrides any rational side of myself. Im quite an intelligent person and dont understand why I cant do this. I know ive suffered with bulimia in the past which is a something that rears its ugly head from time to time and which I can accept but where my diabetes is concerned I am a complete mess and feel too f@#$ ed up ()
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Ive had vitrectomies in both eyes
Neuropathy severely affecting my ability to walk.
My balance is severely impaired
I cannot climb stairs
My eyesight is affected
I have numb and painful feet
The muscles in my legs are wasting
I have no energy...ever
My kidney function is impaired
This is why I am so disgusted with myself....I cant stop despite sll this..and I'm only 37. I know it sounds dramatic but I feel like im just waiting for everything to be done so it will all be over as im so tired of the constant struggle I have with myself. Its like tge need to not be fat overrides any rational side of myself. Im quite an intelligent person and dont understand why I cant do this. I know ive suffered with bulimia in the past which is a something that rears its ugly head from time to time and which I can accept but where my diabetes is concerned I am a complete mess and feel too f@#$ ed up ()
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Im so sorry. Ive just read my post and sound like a complete whinge bag. Im sorry too about the expletive. Xxx
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Don't worry -you have good reason to 'whinge'. well not whinge but to express how you are feeling. I used the f word too! Sorry for all you are going through. Do you think it is the need to be thin that over rides your need to control your diabetes? I know it's hard to be rational about such matters when food/body size is such an emotive issue.
I think my problems stemmed from the fact that I was a plump child, and at the age of 11 went to live with my father and stepmother as my mother was having problems looking after us. (I did not develop diabetes til age 15). My stepmother, who has food issues of her own, told me she'd 'get on better with me if I lost some weight'. For many years I was convinced that was the route of happiness, of course it isn't. If I hadn't got pregnant when I did maybe I'd still be the same as I was, but suddenly there was another little life on board and that changed everything....once I'd intensively controlled my diabetes for 9 months it was easier to continue. I went though a terrible time emotionally when I had the first problems in my eye, I couldn't stop feeling guilty about the past like it was some sort of diabetes day of reckoning and all my being a bad diabetic in the past was coming back to make me pay. I've moved beyond that now but still look back at my behaviour around food when I was younger (bingeing and not taking insulin) and feel aghast at what I was doing to myself.
I'm sure you've already tried counselling/therapy but maybe now you are ready to make a change it's time to seek out a proper, professional psychotherapist who can help you? Don't expect to get this on the NHS as you may have to go private but it would be well worth the investment.
I think my problems stemmed from the fact that I was a plump child, and at the age of 11 went to live with my father and stepmother as my mother was having problems looking after us. (I did not develop diabetes til age 15). My stepmother, who has food issues of her own, told me she'd 'get on better with me if I lost some weight'. For many years I was convinced that was the route of happiness, of course it isn't. If I hadn't got pregnant when I did maybe I'd still be the same as I was, but suddenly there was another little life on board and that changed everything....once I'd intensively controlled my diabetes for 9 months it was easier to continue. I went though a terrible time emotionally when I had the first problems in my eye, I couldn't stop feeling guilty about the past like it was some sort of diabetes day of reckoning and all my being a bad diabetic in the past was coming back to make me pay. I've moved beyond that now but still look back at my behaviour around food when I was younger (bingeing and not taking insulin) and feel aghast at what I was doing to myself.
I'm sure you've already tried counselling/therapy but maybe now you are ready to make a change it's time to seek out a proper, professional psychotherapist who can help you? Don't expect to get this on the NHS as you may have to go private but it would be well worth the investment.
Laura1976 said:
Very much like me
I lost all my eyesight and now left blind in one and 80% returned in the other eye
I personally don't think type 1 is recognised with all it's associated problems
The thing that makes me sad the most at the moment is the way in which this illness destroys people over a period of time. I am so so sorry to anyone with diabetes of whichever type, with long term complications due to not managing it effectively in the past. I know I have felt very sorry to/for myself but am trying not to let it destroy my life now. When I got really bad retinopathy last year it nearly destroyed my job (as I had just accepted a new job which involved driving before I got the bleed, luckily I paid for a private vitrectomy and just about managed to recover in time to start it as otherwise I'd have had to quit before I begun) and then it nearly destroyed my family plans as I really was unsure whether to risk having another pregnancy.
Its not at all unusual to get an eating disorder with diabetes, in my case I was pretty eating disordered before I was diagnosed so it was just adding fuel to the fire really.
Also I was not helped by the fact that NO ONE mentioned matching carbs to insulin to me until 2006, and I was diagnosed in 1993. I was put on medication at first (I have slow onset or mody) then went on to insulin in 1996 and was literally just told 'take this twice a day and away you go', looking back completely substandard care but I didn't realise at the time I was only young. So I took myself off it and back on the pills, which weren't strong enough, until 2000 - again I was just told to take set amounts (although basal/bolus this time), no help at all. To be fair I probably didn't fight or the support as I wasnt' really helping myself but I should have been offered it. Not until 2005 when I got background retinopathy did anyone mention dafne and then I didn't get on a course until 2006. I found it all too overwhelming and complicated so I gave up not long after I started.
Most of the people I have heard of who've had bad retinopathy have either had an eating disorder, or alchoholicsm, or some other factor or mental heatlh problem that stopped them taking control. Its such a shame as we have to live with the guilt for the rest of our lives.
I can honestly say that it is a blight on my life, no matter what I do in the present the past will always haunt me now.
Its not at all unusual to get an eating disorder with diabetes, in my case I was pretty eating disordered before I was diagnosed so it was just adding fuel to the fire really.
Also I was not helped by the fact that NO ONE mentioned matching carbs to insulin to me until 2006, and I was diagnosed in 1993. I was put on medication at first (I have slow onset or mody) then went on to insulin in 1996 and was literally just told 'take this twice a day and away you go', looking back completely substandard care but I didn't realise at the time I was only young. So I took myself off it and back on the pills, which weren't strong enough, until 2000 - again I was just told to take set amounts (although basal/bolus this time), no help at all. To be fair I probably didn't fight or the support as I wasnt' really helping myself but I should have been offered it. Not until 2005 when I got background retinopathy did anyone mention dafne and then I didn't get on a course until 2006. I found it all too overwhelming and complicated so I gave up not long after I started.
Most of the people I have heard of who've had bad retinopathy have either had an eating disorder, or alchoholicsm, or some other factor or mental heatlh problem that stopped them taking control. Its such a shame as we have to live with the guilt for the rest of our lives.
I can honestly say that it is a blight on my life, no matter what I do in the present the past will always haunt me now.
Flowerpot
Well-Known Member
- Messages
- 424
- Type of diabetes
- Type 1
- Treatment type
- Pump
Hello, my first post here. Reading the posts on diabulimia really struck a nerve.
I've been type 1 for 36 years and have endured two periods of diabulimia lasting about 10 years in total, although it didn't have a name 25 years back, just poor control or try a bit harder! It really is such a difficult condition to get to grips with especially when combined with diabetes. Rationally there should be no competition between choosing long term health over ill health and pretty much guaranteed complications but sadly there is. For about the last 15 years I have called an uneasy truce with it, the gremlins are still there but the reasonable me now has the upper hand. Switching to a pump 12 years ago probably saved my life, basal insulin goes in 24 hours a day and should I choose to have a thin day where I don't feel like eating very much it is manageable whilst maintaining normal glucose levels.
Sadly I didn't escape unscathed from my problems and have no sight in one eye, limited in the other, revoked driving licence, zero hypo awareness . However, you can move on from the all consuming problems you are facing with help, my diabetes team and dietician helped me greatly but it took time. Weight is still a paramount worry to me but being 6 stone doesn't suddenly make the world any better. In the 1970s and 80s the first comments I seemed to get at the diabetes clinic were "watch your weight" or "you have put 3 lbs on", not that I was ever overweight but the continual reference to weight really played havoc with me, I still can't face being weighed at my clinic.
You can reach a stage where it is possible to maintain a healthy weight whilst keeping good control but also keep the lid on the gremlins. Please don't despair, there is a happier balance when life does improve but it does take time and help.
I've been type 1 for 36 years and have endured two periods of diabulimia lasting about 10 years in total, although it didn't have a name 25 years back, just poor control or try a bit harder! It really is such a difficult condition to get to grips with especially when combined with diabetes. Rationally there should be no competition between choosing long term health over ill health and pretty much guaranteed complications but sadly there is. For about the last 15 years I have called an uneasy truce with it, the gremlins are still there but the reasonable me now has the upper hand. Switching to a pump 12 years ago probably saved my life, basal insulin goes in 24 hours a day and should I choose to have a thin day where I don't feel like eating very much it is manageable whilst maintaining normal glucose levels.
Sadly I didn't escape unscathed from my problems and have no sight in one eye, limited in the other, revoked driving licence, zero hypo awareness . However, you can move on from the all consuming problems you are facing with help, my diabetes team and dietician helped me greatly but it took time. Weight is still a paramount worry to me but being 6 stone doesn't suddenly make the world any better. In the 1970s and 80s the first comments I seemed to get at the diabetes clinic were "watch your weight" or "you have put 3 lbs on", not that I was ever overweight but the continual reference to weight really played havoc with me, I still can't face being weighed at my clinic.
You can reach a stage where it is possible to maintain a healthy weight whilst keeping good control but also keep the lid on the gremlins. Please don't despair, there is a happier balance when life does improve but it does take time and help.
AngelaY
Member
- Messages
- 19
I truly understand how you feel. I'm 18, got type 1 when I was 14,15. I wasn't overweight. But I just wanted to be prettier. So somehow I found out that I can lose weight and eat what I want any time. But after 3 years of that, I had a lot of complications and hospital stays. I felt it's not fair for me and my family to go through this and it's all my fault for putting them through that. So I pray everyday and ask God to help me. I would cry every night before I take my latus knowing that tomorrow I would weight a bit more. But God helped me, I started to eat a low carb diet and excercise regularly. My A1C dropped from 12.4 to 5.3 within two month. So don't give up. It can happen. Message me if you need help and support, I know I am young but I'm sure I know what you will need to go through this. Keep up!!!
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