Next week, on Supersize vs Superskinny (Channel 4, 8pm, Tuesday night) they are doing a feature on young Type 1s who reduce insulin intake and run high BGs on purpose to stay thin...  Pretty horrific - the girl they have on has lost the sight in one eye as a result....

I am currently researching into diabetic eating disorders, in particular diabulimia.  I am looking to speak to people who have any type of experience of this condition either first hand or possibly it effects someone close to you. I would be keen to highlight that I am in the initial research stages only and that all communication is in total confidence and does not commit you to taking part in the finished piece.

I first became aware of Diabulimia when a good friend of mine began to suffer from the associated symptoms. I still find it hard to understand why there is so little awareness about this disorder, particularly in the UK, and its very dangerous health risks. Researching into the subject I have begun to discover a greater understanding of not only diabulimia, but a deeper insight into actually being diagnosed with type 1 diabetes and the constant relationship with insulin that other people take for granted.
The aim is to spread understanding in a subject area in which I believe there is still very little awareness.  I am very keen that this is spread from the perspective of those actually affected and involved. In this way it is very important for me to speak to as many people as possible to ensure that the issues that you think need to be raised are given the opportunity to be and that the challenges you have faced are voiced.

I would like to emphasise again that I am in the initial research stage and that all communication with me is in total confidence and in no way commits you to taking part in the finished piece.

Should you want any further information please feel free to PM me

Kindest Regards

Karen x

Sounds like valuable research, but sadly I can't help you myself...

Good luck though!

Karen, i don't believe any of us on the forum suffers from diabulemia

perhaps the local diabetes clinic would be able to help you?

Having said that, Kate, there may well be people on the board who suffered from it when younger - those diagnosed when younger...  Like anorexia, I believe it plagues teenage girls in particular.  So those of us diagnosed as adults are less likely to have been hit...

Jen - I rather thought this was quite a modern phenomenon? but I don't know??

Dunno.  Like most of these things, it's probably been around for donks but only got a name in the last few years.

Tell you, when young and insecure, the thought of getting thin as fast as I did last summer might have been an attractive option!

To my everlasting guilt, I can recall walking down the road actually thinking "Oh this WeightWatchers stuff is so tiresome, now if I could just get diabetes it (the weight) would just drop off!".  At the time, all I knew about D was that it could make you lose weight, and then you took a pill and went back to your normal life - according to the one friend I knew who had it!  6 months later I regretted that wish, very heartily indeed!

There was a time long ago when I now know that I had an insight to eating disorders so for what it is worth here is my take on it.

I was in the military and we were being trained in E&E or escape and evasion. The whole story is quite funny and when I get the time I might blog it but for now, we were not given any food or water but had to make do or acquire. The long and short of it was that I went escaping to the coast of Denmark in winter badly clothed and with no resources at all. I did not eat for 3 days and only had a litre or so of water. What I discovered was this; the hunger pains came and then disappeared and never came back at all. [In later years after becoming diabetic, I now understand why this is - a natural physical response] I became weaker as I plodded along and the sheer mental function of keeping going distracted me from the  physical discomforts of blisters, chaffing and the unbearable cold.  I remember thinking that many others must have experienced this long before I was born and that many are experiencing this very same thing that very minute in many parts of the world.

I got to the end and we were all shipped back to base where we got showered and straight off to the tent that was serving as a cook-house. Then the strangest and most lasting thing happened, with a lovely 'flupsoup' in front of me, I discovered that I didn't want it. I didn't feel hungry, I didn't crave food but more interestingly, I didn't want it. There was no reason for not eating just that it seemed to be a chore and not something I wanted to do. Simple as that.

I did of course have the soup but that was all. Nothing else, it took me the following 3 days to get back to a normal eating routine. I have never forgotten my feelings and thoughts from that time and it left me utterly convinced that I had perhaps ventured into the realms of what we now refer to as an eating disorder.

Now jump forward many years [15 or more] and I have just turned diabetic. I went on a severe diet not just to loose weight - though there was little to loose it seemed a good thing to do  - but to measure my responses to this thing. I did loose weight and quite a bit but that was just a side effect [if you like] and was not the intention specifically.

My doctor thought I had developed an eating disorder and was concerned. I had gone to see him about pains in my thighs which prevented me from being seated for more than 15 minutes or so. I thought it was a re resurgence of my earlier back problem but as it turns out it was definitely not.

I had been steadily loosing weight and concentrating on my BG performance. I lost almost all excess body fat and had started burning the fats that line ligaments, tendons and nerve clusters that are located in the legs and lower back. That was the problem. I was sitting on no padding.

This is what happens when you loose weight excessively, you loose fats from places here it is needed and once that has gone you then start to burn 'brown fats' which can never be regained because you are born with them and that is it. Once that happens you are almost on the road to death from organ shut down and collapse long before muscles are completely eaten.

With these two events in my life [and I still battle with the last one - or the effects of it] I think I have a bit of understanding on how it works for some. Motivation to go down this road is very simple - FEAR. That is it.  There is no desire for anything, when all is cut away to the basics it is simply fear that provides the motivation to go this way. Once started and the normal physical balancing responses are passed, such as the initial hunger, there is no felt physical urgency for eating other than a general and slowly building weakness. Once at this stage, it is simply the mind takes over in that you have to be consciously determined to eat. So if you do not want to because there is an over riding fear of something then not to eat becomes really easy. After a very short while, it is normal.

In my case, I was generally weaker than before and that plus the pains in my thighs when sitting down, made it hard for me to work. Initially fear of diabetes got me on the starvation road but fear of loosing my employment got me out of it.

The key in my mind is simply fear - fear of what is the over riding question. For some it is simply not being the right shape but whatever the reason if this road is travelled too early in years before maturity of thought process is gained, then there is a great danger that this problem will stay with the individual as a learned mental process and way of thought, for the rest of their natural.

These afflictions are a direct result of the way we have allowed our society to develop. It hardly ever occurs in the 'developing world' where people starve not because they don't look good enough or measure up to some stupid fantasy image but because they have little or no choice.

Diabulimia/diorexia - bol****** I am sorry but I have very little patience with people who have an interest in 'working towards understanding' blah blah blah. I have met with and discussed many things with all sorts of people 'in the industry' who are 'working towards a possible solution or understanding' and not a single one had the faintest idea of half of the fundamental issues they are researching or the fundamental physiological mechanisms that are involved.

These are not NOT new diseases at all and why people persist in thinking along those lines is completely baffling. They are a manifestation of FEAR and that is the fundamental bottom line/common denominator. Anything else is total rubbish. So to anyone who wants to learn or understand more then I recommend studying psychology and mental health issues first.

Extract from elsewhere

Quoted Text

Diabulimia tends to start in adolescence and is more likely to occur in women than men.

If you re read above you will see that I no lie.

There are only 2 single and different motivators in life and all of us are born from the womb with them already genetically built in irrespective of sex. FEAR and PLEASURE. Every single living thing on this planet has this genetically imprinted. It what makes a baby instinctively suck its what makes you make the decisions you make throughout life it is how your brain functions it is how you learn.

Karen, if you want to learn more then start at the beginning. Every person develops differently as an individual and so we all respond differently to Fear and Pleasure. Diabulimia is not confined to T1's at all and it is definitely NOT a disease but a psychological condition. Forget the diabetes because I think that that is a secondary issue, a bulimic has psychological problems, a diabetic has physiological problems and a diabulimic has both. T1 diabetes is at present incurable. Bulimia is the main issue here and should be thought of as the main issue. The bulimic is using T1 conditions as a tool to further bulimic interests.

Hope that Helps

Pete


Apologies for the rant

Pete

That is the most sensible and understandable thing I think I have ever read about eating disorders.  

I know it to be absolutely true that you can quickly get out of the habit of eating if the conditions and your own mental condition combine to lead you to it and how, even though you know you need to eat, you just push it round the plate or have to do summat else whilst actually eating to take your mind off the sawdust - which you might just as well be eating - for all the enjoyment whatever tasty morsel is put before you, will provide.

Thank you!

Sedge, thank you. After re reading my babble above I think I sort of got a bit annoyed. Unfortunately that is my way, it's born out of impatience which is my nature  

I am utterly convinced that there are hundreds of diabetics out there all of whom have been close to or are close to eating disorder problems simply as a direct consequence of the desire to deal with their diabetic life. The biggest hurdle is that many are not very well read or educated on the things they need to be in order to even venture along the roads that some do. I believe there are many people out there yet undiscovered by the media who are dealing with this problem.

In my case, I do not think I have a problem but I s'pose that is arguable. However, I do think that I was on the road to it. I have just spent the last year trying to gain weight and have succeeded at the expense of my BG but as you might guess, I have not put it on where I wanted to. Duh but I knew that would be the case so I am now on my fitness cycle to trim the excess of my gut.


Pete

hi I'm Janine
I'v suffered with eating disorders for the past 12 years and i'm iddm, over the past 5 years i have battled with diabulima and i'm finding it a massive struggle recovering from it! Its been 3 weeks now since my last hospital addmisson for dka and i was very very lucky to still be here.
I know that there are thousands of diabitics out there who are also suffering with this terrible condition. People who do it are not stupid but lost lonely and very confused! As with all eating disorders i don't believe it is actually about being thin it goes so far deeper than that and its a battle with oneself every day.
I feel there needs to be so much more reserch to be done and help offered. I am also 31 so it does not just affect the young, I hate it and am trying so hard to beat it before it beats me and i loose everything.
sorry to be so depressing, my life is not all bad x x

Hi Janine

It sounds like you've had quite a battle with the eating disorder for the last few years.

Are you receiving help to fight it?  As you say, it can be a very deep-rooted problem, so as I understand people are helped by counselling.  Are you getting that sort of support?

Anyway, welcome to the forum, and we hope you stick around to share your experiences.  We're not experts on diabulimia but can probably help with any questions you have on the diabetes front.

Take care.

LJ

janine,

It might also be useful to drop into chat sometime.  Theres usually a few people around for most of the evening.  Although theres not many with direct experience like yours, many will have had some of the same feelings to some extent so it may well be good to talk to some other insulin users at least.

Direct link:  http://www.diabetes-support.org.uk/joomla/diabetes-chat

Hi Janine,

Like Jenny, I was going to ask if you were having any specialist help with this problem.  Though we can't share experience at least we can listen and understand the feelings we experience in common regarding diabetes itself.

FWIW I think I was once heading for bulimia, but it was a long time ago, in my late 20s and some very very good friends saw what was happening and made sure it didn't go any further.  To be honest I've totally forgotten why I was doing it in the first place or how I felt about it at the time.  What happened instead (and this may sound rather facile, but isn't meant to be), was that I took up smoking at age 28, which was to say the least stupid, but kept me from throwing up after every meal.  Fortunately I've managed to stop that now... well, 8 years ago 5th of Jan coming up.

I hardly ever take my insulin , i hate it, i love not being hungry , n its a tool that i knw many people use, its sad to say bt even tho i knw all of the complications, i still do it...

Hello Leanne, I found it hard to inject into my stomach at first but afterwards I thought that wasn't too bad. Why do you hate taking insulin? Do you take any insulin at all? I hate the fuzzy head and the thirst when I didn't take insulin before i got diagnosed oh and the weeing all night I was just knackered all the time.

Quoted from leanne Bury

I hardly ever take my insulin , i hate it, i love not being hungry , n its a tool that i knw many people use, its sad to say bt even tho i knw all of the complications, i still do it...

sorry to hear this Leanne, you need to seek help in order to overcome this aversion. It's a well known problem with young ladies and it can be overcome

Leanne

You should know you are not alone.  This happens, another member has been through this... see http://www.freewebs.com/diabolicaldiabulimia/  This person is PrincessFairyClare on here and a very courageous woman.  Take a look at the Lurking thread.

Welcome and please stick around!

Quoted from leanne Bury

I hardly ever take my insulin , i hate it, i love not being hungry , n its a tool that i knw many people use, its sad to say bt even tho i knw all of the complications, i still do it...

Whether or not that is a problem depends on your personal situation. I presume you are type 2, is that correct? Tell us a little more about yourself and your diabetes and what you are doing, apart from not using your insulin, to manage it.

Hey there,
just wanted to add to Wendy's comment...I also hate the thirst and pee'ing and tiredness that goes along with high bs........I had this today as I couldnt take my Levemir because was restarting my Lantus at Clinic......I couldnt wait to take it in the room...(even although I had taken novorapid to try and carry me)...

I went through a stage in my teens where I didnt want to inject........not anything to do with my diet/eating.....I just didnt like injecting.....my parents would sit on me and pin me down to give me my insulin....... (at that time was on mixed insulatard and velosolin).........

Im lucky mines didnt end up a much bigger issue.......some of us who have experienced temporary complications ...and some of us who are living with complications........it is terrifying and I wouldnt wish that fear/long term worry on anyone.......or their loved ones......
(temporary blindness for 4 months after eye surgery (non diabetes related)...scared me enough to never ever want to go blind...and I now appreciate my sight more...........................and after HUGE hypos as a teen where I temporarily lost the ability to talk.....was enough for me to pull up my boot straps......I was re-taught to inject and used an injection gun rather than self injecting)

good luck to everyone who has difficulty with their diabetes and other serious issues accompanying it. xxx

Leanne - if you were actually on the correct dosages of the correct insulin - then you shouldn't 'not feel hungry' caused by insulin!

I know it's very hard sometimes and Patti's right - you'll need some help getting your head round it all - but the really good news is the NHS has acknowledged that they do need to help folk like yourself - and will do so - if only they properly know how bad the thing is for YOU.  And it's you that has to make em aware.

I think you've been really brave telling us what you have about it, so far.

Please take the next steps!  You know - once you are able to get going, YOU will be in control of your body and your life with the comfort of knowing that nothing should be going wrong in the bakground - as far as you can help it and I can't explain sufficiently really, what a sense of relief this will be when you get there and how it will empower you.  I'm sure you've heard all this before - but you know - it turns out to be true very often (my little probs were a bit different, but I still grudgingly think sometimes - 'Smug b...'s! - why did they have to turn out to be right?' LOL - and y'know those who helped me were far from smug, they were all perfectly lovely people, who I could really talk to about everything - and there was a lot more 'to' it than I even considered at the outset - things I'd never even dreamt of were affecting me.)

Please try?

PS Leanne - it's true as Alan says, we don't know anything about you really yet do we? - would be nice if you could post in the intro section telling us a little bit about yourself, eg what Type you actually have and which medications and insulins you are on - and any other info you want to share like pets or hobbies or - well - anything really, so we can get to know you a little bit - and hopefully be able to suggest actual things that might help!

If you are prepared to tell us whereabouts you live - you never know a member of this Forum might know exactly who might be able to help you - it's a long shot but you just never know!

Leanne

Please get in touch with me if you want to chat about this or want some support. I have been through the hell of Diabulimia and know first hand the awful effects it has on your body. I'd encourage you to get help and support for this.

My email address is on my website or if you prefer you could send me a private message.

I hope to hear from you soon
Clare

i domt know if il be of any help,  was looking for some others in similar situations also? i suffer from this but am under the catorgy of 'anorexic' but it is controlled by what i do/not inject. i also lost eyesightin mt right eye but luckily though surgery have been(for now) able to save it.  an eating disorder is so strong that complications seem mino to the weight loss/ image, i know the risks,yet i can not 'see' my kidneys/liver/heart etc(although i do suffer from a very high pulse rate) i have nerve damage,it affects my eyesight,i never have energy,im constantly thirsty  etc etc but its the same with any person suffering with an ED without diabetes.they too,are damaging internal organs,it is the biggest killer through mental illness,but the fear of losing control#(ur so out of control u cant see it) and the fear of gaing the weight etc is to immence to put your real health first.
I can understand that others will not understand and i to sometimes think,'this is your life,your eyesight,youare playing with ,but its always 'tomorrow' or iv been alright so far,i wish things were differnt.i wish to god i wasnt diabetic (iv been since 11 am 22 now)  yet sometimes the ED has said no,this is good because without the injections or lack of i couldnt of done this it has 'helped' with my weight lose,
people say
'wouldnt it be great to eat what you want and not gain weight' well i know this, i often when on a binge have eaten and eaten thinking its ok because iv not had my insulin,none of this is going to count, knowing im going to lose weight or just not gain any. it is so stupis the rational side of me wants to change. NEEDS to change

hi amy and welcome to dsf  sorry to hear you have diabulimia i cant say i understand it at all but just wanted you to no there are people here who care and will try to help you in any way we can

Hi Amy - welcome from me too

There have been others in the forum in your situation.

If you want to make changes there are lots of people in this forum who will be only too happy to help you.

Hi Amy
I'm glad you've found this forum, where there are people who have had similar problems. You explain your difficulties so clearly, I feel sure your understanding will help you fight the illness.

Amy,  welcome to DSF

i'm sorry you have to deal with diabulemia as that's no fun at all

i hear you, you know what the consequences are, but the 'demand' to lose weight outweighs the horrors of complications from not injecting your insulin

may i ask, are you seeing a counsellor about the diabulemia?  i know of people who do much better when they are getting help from a counsellor

take care, and i hope you stay safe!

Hi Amy

Welcome to the forum.  I am so sorry that you are suffering as you are.  Long ago before I was diabetic I had a brief period where I was heading for diabulimia... but fortunately I had help pretty quickly and it turned me round.  It's not easy though.... Please stick around, at least we can offer you some emotional support.

Hi Amy

Im sorry you are having such a hard time. I agree with your comments though re the term diabulimia. An eating disorder is an eating disorder, its just that the tools to control it vary IMO. Withholding food, throwing up or withholding insulin are just one and the same in terms of the psychological process I feel. Its all about control, and fear, tied in with how seductive it is (to start with) losing weight and the attention you get from this either from family/others.

Add to this the fact that for people trying to control their diabetes that much of your day is spent obsessing about food - what to eat, when to eat, what it will do when you eat, then its any wonder that you throw it all together, with a bit of family problems or self esteem issues, or a horrible comment from a boy you like, or ANYTHING, then bam! - ready made eating disorder.

Most of the ladies,and probably men too, on this forum have dieted, are dieting, or feel they need to diet. Just check out the weight loss thread and see how delighted people are when they lose weight. This is of course natural, there are both vanity and health reasons for this (health ones esp for diabetics) but can its easy to see the connection between mh and weight/eating

In my own case, I have always watched my weight, lost very little before dx (though I was dieting for my hols -again LOL), but lost more when i started cutting the carbs. Twas only 5lbs or so but everyone was horrified. Having been a dieter for half my adult life, lots of people commented on how i was 'cut out' to be a diabetic.  Cruel, but true.

Its no coincidence that since Ive put this back on (bloody insulin and cream in my coffee!) everyone thinks I am looking 'well'. Am I pleased Ive put it back on?

Am I bugger.

However, my fear of complications is greater than my fear of putting weight on/being ill so I dont anticipated sliding into the abyss, and its that control and choice that seperates me from someone with a genuine eating disorder.

Lib

thank you for being so understanding,this is something iv been dealing(or not so) for many years spurred on by my depression which iv suffered from since as long as i care to remember( also a common factor in diabetics) i have spent 11 months in an ED unit,and do have a good community health service yet things seem to be slipping backwards,after i got discharged from hospital i thoughtt' i will never manipulate my insulin to lose weight again,if ido want i will do it through diet and careful exercise.'it did not become long untill i was the grips of things again. recently i have been making a real effort tho and what seems petty to others is a major achievement to me,such as iv had breakfast(with insulin) for all week this week so that is good and i am having my longlasting insulin in the morning now,which is easier then the evening after 'a day of food'.
iv really only recently switched to 4 injections i was on 2 which was the mixed insulin,which only 2 jabs is so so much harder when decidningwhen.what to eat plus it is slightly easier to inject a few units per meal instead of a big dose all in one go. i do now think more about what i am doing long term altho it is hard with the depression when your thinking'actually i dont care either way' but soon i hope to move out,and since leaving hospital iv stareted volunteering at a preschool,and now hope to do a course in it and get qualifications,so i know for this i HAVE to be able to concentrate and have enough energy so spurs me on.plus im in a situation where i want to prove my family wrong by showing i CAN do it weather they choose to help me or not(not is most likely)
ps did they show that supersize episode cos i was looking out for it and seemed to miss that one??

Quoted from leanne Bury

I hardly ever take my insulin , i hate it, i love not being hungry , n its a tool that i knw many people use, its sad to say bt even tho i knw all of the complications, i still do it...

i find the higher my bloodsugar tho the more'hungry' i get (not real hunger i have learnt more immence cravings)

Amy, i'm like you...... when my bg is high, i feel hungrier than i would normally, and in turn, i tend to eat foods that aren't the best choice for me

i am currently being treated for Major Unipolar Depressive Disorder, and i'm on disability thru work for that............ i hope that i get well enough to return to work, and the sooner the better

i can't tell you how many hours i've had in counselling with the therapist, group counselling, group lectures, all of which are designed to assist people with clinical depression

while i'm no longer seeing a therapist, i still see the psych Dr and get my med refills thru him

it really throws a spanner into your life to have these issues to deal with

and, unfortunately, most people don't seem to understand that i have an illness, it's not a matter of me needing to 'pull my socks up', if it were that easy, i would have DONE IT BY NOW!

sigh

please, come and talk to us and vent when you need to, let us know how you are doing, and may i congratulate you for taking your breakfast insulin each day this week! that's a step in the right direction

not sure if this relates at all, are you using a pen or a syringe for your insulin? i know that taking insulin has become a non-issue with the use of the pen............ i can't believe that i waited as many years as i did before i changed to the pen!

One thing that *might* happen, now you are on a proper basal/bolus regime your control should become a lot easier and you may find some of what you think of as "causes" may turn out to be symptoms of your out of control BG. There are a lot of feedback loops involved between "mental" and "physical" stuff

weld def morning dose helps during day ut i do'binge' quite alot,tho tis evei feel likedying anyway

sory keybord is rubish

Amy, just thinking out loud here......

you can get a 'port' that you insert once every 3 days, and you inject your insulin into this 'port'

would having a port make it easier for you to take your shots?

again, just thinking out loud....... wondering if this might help

Hi sweetpea
You are doing well so far, dont give up just yet. If you are binging and feeling rubbish, just go to bed, put and end to this rubbish day and wake up ready to start again tomorrow
Baby steps - take basal insulin first, then eat a bit, then take bolus. just a bit at a time ,you will get there

x

just feel shit this eve. i want  get  beter i want to get rid of diabetes ths will never happen. why me? what did ido?   i was only 11. i just of been   so so evil in my past life. there is so much worse then diabetes but iv never excepted it. i should but why me??

i wish someone  was with me x

Amy
((((((((((((((((((((hugs))))))))))))))))))))))))

Hope you feel a bit better this morning. Do you not have someone you can talk to about this in 'real' life? Its better than torturing yourself in the wee small hours
In my experience the wee small hours are the worst when you  are feeling bad.
Just a thought, but are there forums with chat rooms you could log into (USA forums maybe, given the time difference) then you might not feel alone late at night

Its rubbish having diabetes and its hard to think about the people who are 'worse off' than you when you are feeling down, because there are people 'better off' than you too. But, and I know you know this, you didnt do anything to get it. Neither did I, or anyone on this forum. I was almost catatonic, in between sobbing non stop for about 2 days after I was diagnosed (in hospital). No one in my family has it, and I dont consider myself to be an evil person. Im not Mother Theresa but.............. Maybe in a past life I was bad - but next life Im coming back as a very rich international film star, without diabetes. Until then though.

I wont preach about all the other bad stuff out there because to be honest knowing that there are people with imminent life threatening illnesses dont actually make me feel any better when Im down because although my brain 'knows it, my 'heart' doesnt - if you see what I mean. All you can do for now is take one day at a time.

Dont terrify yourself about what might happen if you dont control it in the long term. Just focus on a bits you can cope with for now - taking insulin on a day by day basis.

x

Amy

If you want to chat there is usually someone in our chat until midnight.  You'd be most welcome.

thank you and sorry i was having a 'me me me' evening and feeling sorry for myself. not healthy!

Don't apologise, Amy. Sometimes a short burst of feeling sorry for oneself and a good night's sleep can be just what's needed to feel ready to take on the world again. Especially if you have someone to listen when you do feel down.

im ashamed at being type one . why?ni dont get it

Were you brought up to conceal it or did you have to remove yourself to do your jabs when you were younger or something?

Amy, you have NOTHING to feel ashamed about, nothing at all, honey

i hear you though, i went thru a period when i wondered the same thing you are wondering right now..... that's part of what i talked to the therapist about.............. take care, honey, you will get thru this, i have every faith in you

and do come to chat, there is a lovely bunch of folks there

You're ashamed because somehow you seem to think that you deserve it or brought in on yourself? You didnt.
You're also likely ashamed because quite frankly you just dont want to have it and you dont want to be different and stand out from everyone else. Is your shame maybe more to do with how you think others see you, or how you make them feel by being diabetic?

I get a bit like that with my family .They know Im diabetic but I still feed bad injecting or taking bg in front of them. Not shame as such, but weird still the same

x

Lib, my mother worked in 'health care' all her life

she will NOT have me test or inject insulin anywhere except the bath room

we have compromised with the spare bedroom/guest bedroom

she's now moved into a senior's condo/assisted living 1 bedroom

oh well

i will get better. i will change. i know diabetes will never go but ED? f**k that i deserve a life now . to many yrs wasted.i WILL change. i need to stop drinkinng asweell

Quoted from amy

i will get better. i will change. i know diabetes will never go but ED?

Amy, may i ask what is ED?

thanks!

E ating D isorder, i am determined to make a better life for myself. shame tho i'll never get rid of diabetes. but altho never 'cured' i will make things better

Quoted from amy

E ating D isorder, i am determined to make a better life for myself. shame tho i'll never get rid of diabetes. but altho never 'cured' i will make things better

Great attitude. If you want to share your goals with us, however big or small they are along the way, remember we are interested in your progress and are always ready to offer encouragement.

Hi Amy...I have been reading your thread tonight (its the wee small hours for me now too) and really feel for you.  I'm type one and was diagnosed when I was 11 too...I'm 32 now and although I have never had diabulimia I have been through some pretty uncontrolled spells both physically and mentally with regard to what the future may hold for a long term diabetic.  I was in a bad place over the last couple of weeks actually and did go to chat...I don't know if you have been there yet but it really helps.  If you ever want to pm me feel free x

Any, i'm so sorry, i was thinking 'disorder that happens to men' when i read your post the other day

today, it was plain.,...............d'uh!

yes, come to chat ........... at the top of your screen is a button to connect to "Live Chat"

yest was my older bro's wedding and i did inject before meal. i know i should anyway but for me was real achievment!

Amy that is so good to hear that from you!  How was the wedding?  It sounds like you took a huge step there but life is life and let's see the good bits?

Well done Amy and thank you for letting us know of your great achievement.

Hope you had a good day.

Look forward to hearing about your next achievement

Heya Amy

Sorry to hear that you are struggling with Diabulimia.

I'm Clare. Haven't been on this forum for a while as I mainly use a different diabetes forum, but I logged in this evening and came across your posts.

I suffered from ED's throughout my adolesence and up until quite recently. It started off as EDNOS then onto bulimia and then to Diabulimia. I've been in recovery for 2yrs now and am healthy again.

If you want to talk to me about anything please get in contact with me, I'm always more than willing to come alongside anyone who is battling this terrifying and isolating condition.
Take care
Clare

Clare, you are just going to have to drop by more often

really............ your help is appreciated!

Hay, Emm I didn't really think anyone knew about it! Is it classed as a eating disorder or what?

hi Aimz x and welcome to DSF!

yes, diabulimia is a form of eating disorder

may i ask, do you have problems like this?

I had this when I was younger, about 16 or 17. I know now that it was a form of rebellion and control. The weight loss was the initial incentive, but I was raised in a very strict religious family as well as being type1 since age 8. I hated that everything in my life was regimented and controlled so strictly; my insulin, my meals, my exercise, my friends, my TV shows, my music - everything! So i stopped taking insulin as it was some way of feeling like I was in charge of something.
After a while I didn't even care about the weight loss - i just liked the control! My parents soon sussed what I was doing though. My Dad has been type1 since the 70s and when they noticed how skinny I was, and how much water I was drinking it was pretty obvious.
Aside form that - my hair fell out! I also have bleeding in the back of eyes for which I am receiving laser treatment later this year. I've had kidney stones, twice, and am apparently a prime candidate for heart failure! I'm certain it is all due to the damage I did during this period
It was so long ago, and for only about 5 months I think that i played God with my own life, I have been happy and healthy for a long time. I don't ever stress about my weight, even though I should probably lose half a stone. It just isn't worth the pain of high blood sugars
Anyone who is dealing with this knows it isn't worth it, but I completely empathise with your reasons why and wish you all the love and support you need
Jen x

Cora

Your sister wasn't taking the mickey out of you at all.  Yes, you can lose weight by not taking insulin, but you don't look "nice" you end up looking as though some horrible creature sucked all the muscle out of you.  Also, as she quite rightly said, if you don't take care of your diabetes you can very easily lose your sight, and your feet.  So please, honey, do take your injections, I know it's a royal pain a lot of the time but if you want to carry on enjoying your life it's the only way.

I hope you stay and talk to us some more.

Yeah She (My Sister) Did Say She Wasn't Taking The Mick But Oh Well.
My Doctor's Monitoring Me To Make Sure i Do My BMs And Injections
And I Will Be Checking This Daily
Thanks For Replying

Cora, depression is a horrid black dog, i hope you are getting treatment (medicine AND counselling) for it

how can we help you?  what do you need?

(((((((((((((((((((((( hugs ))))))))))))))))))))))))))))))))

Hi Cora

You are very welcome here and glad you've clarified about the need to take the injections to stop your blood sugar going high which makes you feel lousy and could, in the long term, cause problems.

I did have one thought. I don't know much about it myself, so can't actually recommend it, but I've heard several other people sing the praises of a diabetes site/forum for young adult diabetics. It's Australian, but I think it has participants from all over the world. Some of the stuff is only relevant locally: other bits are much wider. Maybe worth a look and see what you think.

http://realitycheck.org.au/RCforum/index.php?c=2

[edited by Terry, who included the wrong site by mistake originally.]

Hi Cora

I'm really glad that you decided to take care of your diabetes!!!

I hate telling horror stories - nobody wants to know how horrid Diabetes can be if we let it! - far too scary, isn't it? but we also have to understand and accept that not only can it be horrid - it WILL be horrid !  BUT only if WE let it do that and don't take proper control of it.  

The key to it is to learn and understand more about it, then we will know better how to avoid problems.

We can't do that unless we have good teachers that we like and trust, can we?  

Even us old Grandma's need help - look how long I've been diabetic, and I'm still learning about it.  All the time!

Have you discovered our website yet?  There's shedloads of info on there about all sorts of aspects of diabetes, Type 1 and Type 2.  Just click on the link the DSF Home button under the logo at the top of the page.  Some of the blogs are really funny!!! (and some serious ones)

ANY questions - ask away - Patti always says the only stupid question is the one you didn't ask!!!

I Was Getting Counseling But I Found It Awkward As My Mum Insisted On Being In The Room All The Time.
I Will Defiantly Check Out The Links ASAP So Thank You For Them.
I've Always Struggled With Accepting I Have Diabetes.
I Even Bargained With The Nurse When I Was First Diagnosed Over How Many
Injections. I Had To Take 2 In The End But It Was Meant To Be Four.
Thanks Again    

Cora

Is there any way you can talk to your mum about going to counselling on your own?  I have had some counselling training and I would find it very difficult to be counselled with someone else in the room because the counsellor is asking you how you feel about things deep down and you may not want to say for fear of hurting your Mum's feelings.  Not that you would say that to your mum, of course.

Umm My Mum Isn't Really The Type To Listen. Unless It's To Her Advice  
Plus My Old Counseller Didn't Really Help Me. She Just Asked Questions Without  An Answer.
If That Makes Sense. And I Have A Hard Time Speaking About How I Feel As Its the Thought Of The Car Drive Home That Makes Me Worried As To What She Would Say.
Thanks For The Reply

Cora

Quoted Text

Plus My Old Counseller Didn't Really Help Me. She Just Asked Questions Without  An Answer.

The job of the counsellor is to help you to reach a solution that you've thought of yourself because you see if we think of something ourselves, it's usually something we know we can do, or at least think we may be able to do.  That's why she asks lots of questions, to get you to tell her what you really really think and how you feel, then you can start to think of things that can help you past that.  She could suggest 20 things and you may not like any of them.  Sometimes we just get our thoughts and feelings all muddled up and everything seems bigger than it is and we cannot see a solution.  If you have time with a counsellor it's normally a private place where you can concentrate on sorting out your thoughts and feelings and find ways to change things so that you are more comfortable with them.  But I can see that it would be difficult to tell her your innermost feelings with your mum sitting there and then having to have her next to you in the car home bringing it all up, because essentially it's private to you isn't it?  We all like to think our thoughts and feelings are private even from people we love.  We will tell them what we want them to know as and when we do.

I'm not sure how old you are now, but you sound like a very sensible and mature young lady.  Perhaps you could tell us something about how you feel about your diabetes, and we might be able to help you a little bit?

Hi Cora

Does your school have a counsellor? - many do now and you would be able to speak with them in confidence and they would be trained to work with young people.

Response To Patti I'm 13 Nearly 14 Now, I Hate My Diabetes! It Makes Me Feel Different From My Friends And As If I Constantly Need To Be Watched Over It When Im Out. I Used To Search For Hours On The Internet For Ways To Make My Diabetes Easier. I Asked My Doctor About The Pump But He Said He Wouldn't Allow It Although Im Not Sure Why As I Thought It Was A Good Idea.

And My School Does Have A Counsellor But She Is Very Busy And When I Had A Meeting With Her Once I Missed It. My Head Of Year Says I Can Speak To Her So Sometimes I Do. But It's Hard To Find Someone I Trust Enough To Speak Freely About My Thoughts And Feelings.
Except From My Best Mate.

Hi all

i was diagnosed with Diabulimia early last year. I found it all started because i was in a very controlling relationship and my diabetes was the only thing i could control myself. I always hated being bigger than all my friends and i knew that not taking my insulin would make my weight drop dramatically. I've been in and out of hospital more than 20 times in the past 2 years with Diabetic Ketoacidosis, the most recent was 6 weeks ago. It was odd for me, i knew that by not taking my insulin could result in my organs and limbs deteriorating but i didnt care, a family friend had his leg amputated due to neglecting his diabetes but i wasnt scared in the slightest. The thing that terrified me was the last time i was admitted, i was in bed not feeling too good, then all of a sudden vomitting, not just normal vomit but a black liquid, which i was later told was the lining of my stomach. I carried on vomitting for an hour or so until my mother came home to find me with my head down the toilet. As she does, she was worried so phoned for advice, telling the lady at NHS direct what was wrong, she was told to phone an ambulance. When they arrived i was unconscious on the bathroom floor, when i arrived at A&E they couldnt get any blood from my finger to check my BMs. They said this was cos my body was shutting down due to having no insulin intake for so long. I was basically hours away from death and that out the s*!*s up me. what was i doing?? i was killing myself because i had an issue with my body, i was upsetting my family. i couldnt do it.

anyway, after i came round and they jabbed me with insulin and put on a ward, a nice gentleman came to see me from the metal health team, he advised me to see him on a weekly basis. sooooo, i am i admitted i have a really big problem with my diabetes, im the only one in my family with it and i always think 'why me, what did i do to deserve this', i was diagnosed at 15 and i got on with it, but now (just turned 22 last week) im finding it a lot harder to cope with. but i'm proud of myself, been out of hospital for 6 weeks, and since then i've taken all my injections (minimum of 4, sometimes 7) every day i still see my psycho-therapist every week and im proud. i never thought i'd get over this, but im trying my hardest. i was a podgy 13stone sze 16, and i went to a slim 8stone 12 size 8, i thought i looked great, but looking back i was ill, my face was gaunt, my collar bone stuck out, i had the body of a kid. i've also had to cope with the fact of my hair thinning out, i used to have lovely thick hair, but cos ive neglected myself its so thin, my 3 yr old neice has thicker hair, and ive lost my boobs lol one thing i never thught would happen is being happy with my. since taking all my injections for 6 weeks i thought id pile the weight back on, but my weight has gone up to 10stone and im a healthy size 10, my bmi is 21 which is normal.

i guess what im trying to say is, if you do suffer with this, you can get over it, but the first step is you need to accept you have a problem and ask for help, thats your problem halved by 4 little words 'i need help'

Sarah Loo
xx

Sarah, reading your post has made me cry!  Be proud of yourself for turning things around!

Wow Sarah - I just want to give you a big {{{{{HUG}}}}} and thank you so much for your post.

Well done for turning you life around - you must be soooooo proud

CONGRATULATIONS

Ditto that

You described your DKA experience very well and if just one person with diabulimia reads it (even as a lurker, cause we know how hard it is to get confidence to join forums and post when you are feeling very bad about things) and changes their mind on the basis of it then you will have done more good than you know

In saying that, I live in fear of DKA so maybe you are just contributing to my growing phobia
Seriously though, as I said in another post, takes a lot of guts to turn things around (and so quickly too) and to admit all this

Keep being kind to yourself x

Well as with most problems especially of a more mental nature the biggest part of the battle is a) Realising you have a problem and b) Wanting to do something to fix that problem. Hope you sort it out

Hi Sarah_loo, Welcome to DSF, thank you for sharing your very moving, inspiration story, congratulations on your turn around, heres hoping you continue to thrive, don't ya just love it when you hear a success story.  

thanks just thought it might give some people who have problem the strength to do it themselves and to know that they can actually do it ive been through alot the past 2 years and i wouldnt wish that on anybody, im just thankful my body hasnt suffered from the damage i did, but because of what ive done i know ill have problems later on in my life. but im trying my best to improve my lifestyle now to try and prevent the damage, only time will tell

Sarah x

Wow, lady!!!  Deepest Respect (in Ali G voice)!!!

- I'm now waiting - actually with excitement - for your next result !!!!

fingers crossed single figures

My name is Jacqueline Allan and I am the Director of http://www.DWED.org.uk (Diabetics with Eating Disorders), a not for profit organisation working towards charitable status. Recent studies show that not only are female* type one diabetics at twice the risk of developing anorexia or bulimia, as many as 40% of 15 – 30 year olds regularly manipulate or omit insulin in order to lose weight (commonly dubbed diabulimia). This practice can have devastating consequences such as organ failure, infertility, blindness and in the worst cases, death. Despite this it is not officially diagnosable and there are no current guidelines for the NHS on how to deal with the issue.
DWED has two main purposes. Firstly we offer support to those affected by deliberate omission and their carers. We try to find suitable services in their areas and this information will be posted on the website so that those who are ready to seek help know where to go to get it. DWED also supports suffers and their carers personally through emails, phonecalls, where possible home visits and through a variety of social networking sites and from tudiabetes to facebook (public and private). There are 500 members across groups. All of the sites are completely pro recovery with no pictures of talk of numbers allowed.
The second purpose of the organisation is to campaign for better (in some cases any) facilities for Diabetics with eating disorders. DWED is in support of Deliberate Insulin Manipulation/ Omission being recognised as a Mental Disorder. We have a number of members who have been simply deemed as non - compliant and left at that. This is not only unsatisfactory it is potentially lethal.  As something that is not officially diagnosable deliberate insulin manipulation/ omission tends to cause a confused reaction among professionals. To be honest when this project began the core aim was to raise awareness within the health service. The overwhelming reaction from all the PCTs contacted is that nearly everyone is aware of it but no one knows what to do about it; there is no ‘strategy’, no guidelines and little UK based research.   As such DWED is putting together a Professional Advisory Board composed of Eating Disorder and Diabetes Professionals in the hope that a dialogue will open and a multi – disciplinarian, patient centred approach will be promoted.
I hope that I have explained adequately what Diabetics with Eating Disorders does and that this is something you are interested in supporting.  If you have any questions or comments then please get back to me via the website or through jacq@dwed.org.uk

*Although less common it can also be found in type 1 males.