Diabulimia

Laura1976

Member
Messages
22
Type of diabetes
Type 1
Hi. This is my first time on the forum and was wondering if anyone else is or was as badly controlled as I am....im 37 years old and type 1 for 22 years now. My hba1c is 14 and has been around that on and off for the past 10 years at least. I dont take my insulin and eat what I want. I know how irresponsible this is and cant seem to stop despite complications setting in already. I cant seem to break the vicious cycle I am in. I used to be bulimic and didnt take my insulin as I kept going low from purging the food I ate. Although I dont purge anymore I avoided gaining weight by continuing to not take my insulin. Despite suffering complications with my eyesight, neuropathy and balance issues i continue this destructive pattern... I cant even climb a flight of stairs. I keep saying to myself that there's no point in starting to take my insulin as the damage is already done. Sorry for droning on...id appreciate any comments

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JaneC

Well-Known Member
Messages
201
Type of diabetes
Type 1
Treatment type
Pump
This seems like a suicide posting and really don't know what to say that can possibly help. If its a cry for help would suggest you speak to whatever clinic you are attached to but would suspect you have already done this and are known. I don't think this forum is equipped to help but interested to see what anyone else suggests.



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ewelina

Well-Known Member
Messages
1,354
Type of diabetes
Type 1
Treatment type
Pump
Please get some help for eating dissorder. You probably know how dangerous it is so there is no need to explain that to you. Its never too late and your life can be much happier and better than it is now. And getting there is probably easier than you think. Good luck and keep posting on your progress here
 

debs6566

Active Member
Messages
37
Hi Laura Im sorry your feeling like there is no point trying now as you are having problems. It really is never too late to try. Im afraid no-one else can do it for you but why don't you try - one day at a time that's all any of us can do . If there isn't anyone to talk then come on here . Have a look at other posts - others have done the same as you . You might not be able to reverse your problems but you could prevent them from getting worse. Its up to you hon :)
 

phoenix

Expert
Messages
5,671
Type of diabetes
Type 1
Treatment type
Pump
You've made a big step twriting about it. You're not alone, many many women with T1 have the same problem.
Please take another step, contact these people, Many of them have gone through the same things themselves.
http://www.dwed.org.uk/
 

Laura1976

Member
Messages
22
Type of diabetes
Type 1
Thank you for all your kind words...I know it is only me that can turn things around. I am going to take a day at a time and I will really try and take my insulin regularly. I wish I didnt care about getting bigger...its just that my whole face and body swell up when I start taking more insulin which makes me feel even worse....I know alot of people may think really badly of me as I have this condition that can be controlled and it will seem like I am choosing not to control it. I really wish I could just flip a switch and it all be ok...xxx

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ashton12

Newbie
Messages
2
I read your story and felt compelled to share mine. You are going through exactly what I went through and what is a battle every day for me. Ive had type 1 for about 12 years. Up until about 6 years ago I managed it fairly well. Then I got complacent and when my relationship with my fiance ended I spiralled out of control. I stopped taking my insulin regularily. I guessed my dosage when I did take it. I could control my weight this way and like you I couldavoid waking up with a fat swollen face. My hba1c went from 8 to 11 but I felt fine so I kept abusing the power I had to control my weight. I dread the thoughts of putting on weight. Ive always been between 8.5 and 9.5 stone. I'm 5ft 5. Ive alwayseaten well and never had an eating disorder. After a couple of years I started to get pains in my legs feet and arms which became so debilitating I couldn't walk some days and even wearing clothes hurt my skin. I was diagnised with diabetic neuropathy. Im now on medication for this which numbs the pain. But even after this I still didnt stop the abuse and neglect. Things were fine for a good while. My boyfriend and I planned a holiday of a lifetime for my 40th birthday. It cost a fortune we were so excited. We had 6 wonderful days. I ate what I wanted to eat just like I did at home. Nothing excessive the odd sweet treat but didnt take my insulin as often as was required. One morning I woke up and just did not feel myself. I was so upset to be in bed missing the sunshine. I thought I could sleep it off. My boyfriend gave me a drink of water. I imediately threw it up. I tried again but it wouldn't stay down. I didnt have any pain but I knew something was wrong. My feet and legs had swollen up too. Eventually I just said get a doctor. My boyfriend called the emergency doctor. Within an hour I was rushed to hospital on a drip and was on the verge of a diabetic coma. I was pretty much out of it for three days and spent a further six days in a greek hospital. It was awful. Comunication with doctors was a struggle due to language barrier. Those first few days I was hooked up to four drips I qwasn't allowed to eat. I had to wear a catheter and a nappy as the stuff they were pumping into me made me unable to control my bodily functions. Sorry its dusgusting I know. Basically I was close to death. I ruined the holiday and my family were beside themselves with worry and unable to do anything as they were obviously thousands of miles away. My boyfriend stayed at my side throughout the ordeal. I was ecentually told that I had developed servere acute pancreatitis. I had a hba1c of 14. I had ketoacidocis when I was rushed in. I blew up to double my size from all the fluids being pumped into me. I had severe adema too. My arms were black and blue from the daily blood tests and drips. I wasnt allowed to fly until the adema subsided. When I did eventually get home. The adema swollen legs came back imediately. I was given water tablets butwas taken off them as my blood ppressure was so low. I had three weeks off work. That was two months aho and my feet are still swollen although they are improving slowly. I have low protein levels caused by the pancreatitis which is related to yhis adema. I have had fortnightly blood tests to check progress. My liver function suffered too. I think im almost back to normal now. Im back in touch with my diabetes nurse and a dietitian. Im a stone heavier than ive ever been and I feel disgusting but everyone tells me I look so much better and healthier. I just dont agree. However...I am hoping to start excercising soon and I check my bloods regularily through the day. Im carbohydrate countingnow which should help me to not take too much insulin which as we know all too well is the cause of weight gain. Im trying to eat a low gi diet so I don't feel hungry and ive cut out 99% of all the sweet stuff I loved. I do still have a little treat but I now know when to stop and take my insulin acordingly. I weigh 10 stone now but im hoping that when I start to excercise along with a low fat diet I will get back down to my preferred comfortable weight and get back into akl my lovely clothes. Ive learnt my lesson the hard way. I know my health is the most important thing but still my weight issues are at the forefront of my mind and that won't ever change but what has changed is that im now doing what I should he doing to get better and my family still have a daughter/sister/auntie. My mum was diagnosed with cancer while I was in hospital in greece. My family couldn't bare to tell me until I was safely home. She is doing well now...still poorly but hopefully on route to recovery......I have to stay well for her...it stops me feelibg sorry for myself.....I know this has heen a long winded story but please please please learn from it and start looking after yourself. Iwas minutes away from dying. This could so easily happen to you with no warning...perhaps you wont be so lucky. I wish you luck. Youre not alone with how you feel. Its really hard work to change your mind set but its worth it to still be hear for everyone I love and care about and those who love me back. Xx
 

ashton12

Newbie
Messages
2
I read your story and felt compelled to share mine. You are going through exactly what I went through and what is a battle every day for me. Ive had type 1 for about 12 years. Up until about 6 years ago I managed it fairly well. Then I got complacent and when my relationship with my fiance ended I spiralled out of control. I stopped taking my insulin regularily. I guessed my dosage when I did take it. I could control my weight this way and like you I couldavoid waking up with a fat swollen face. My hba1c went from 8 to 11 but I felt fine so I kept abusing the power I had to control my weight. I dread the thoughts of putting on weight. Ive always been between 8.5 and 9.5 stone. I'm 5ft 5. Ive alwayseaten well and never had an eating disorder. After a couple of years I started to get pains in my legs feet and arms which became so debilitating I couldn't walk some days and even wearing clothes hurt my skin. I was diagnised with diabetic neuropathy. Im now on medication for this which numbs the pain. But even after this I still didnt stop the abuse and neglect. Things were fine for a good while. My boyfriend and I planned a holiday of a lifetime for my 40th birthday. It cost a fortune we were so excited. We had 6 wonderful days. I ate what I wanted to eat just like I did at home. Nothing excessive the odd sweet treat but didnt take my insulin as often as was required. One morning I woke up and just did not feel myself. I was so upset to be in bed missing the sunshine. I thought I could sleep it off. My boyfriend gave me a drink of water. I imediately threw it up. I tried again but it wouldn't stay down. I didnt have any pain but I knew something was wrong. My feet and legs had swollen up too. Eventually I just said get a doctor. My boyfriend called the emergency doctor. Within an hour I was rushed to hospital on a drip and was on the verge of a diabetic coma. I was pretty much out of it for three days and spent a further six days in a greek hospital. It was awful. Comunication with doctors was a struggle due to language barrier. Those first few days I was hooked up to four drips I qwasn't allowed to eat. I had to wear a catheter and a nappy as the stuff they were pumping into me made me unable to control my bodily functions. Sorry its dusgusting I know. Basically I was close to death. I ruined the holiday and my family were beside themselves with worry and unable to do anything as they were obviously thousands of miles away. My boyfriend stayed at my side throughout the ordeal. I was ecentually told that I had developed servere acute pancreatitis. I had a hba1c of 14. I had ketoacidocis when I was rushed in. I blew up to double my size from all the fluids being pumped into me. I had severe adema too. My arms were black and blue from the daily blood tests and drips. I wasnt allowed to fly until the adema subsided. When I did eventually get home. The adema swollen legs came back imediately. I was given water tablets butwas taken off them as my blood ppressure was so low. I had three weeks off work. That was two months aho and my feet are still swollen although they are improving slowly. I have low protein levels caused by the pancreatitis which is related to yhis adema. I have had fortnightly blood tests to check progress. My liver function suffered too. I think im almost back to normal now. Im back in touch with my diabetes nurse and a dietitian. Im a stone heavier than ive ever been and I feel disgusting but everyone tells me I look so much better and healthier. I just dont agree. However...I am hoping to start excercising soon and I check my bloods regularily through the day. Im carbohydrate countingnow which should help me to not take too much insulin which as we know all too well is the cause of weight gain. Im trying to eat a low gi diet so I don't feel hungry and ive cut out 99% of all the sweet stuff I loved. I do still have a little treat but I now know when to stop and take my insulin acordingly. I weigh 10 stone now but im hoping that when I start to excercise along with a low fat diet I will get back down to my preferred comfortable weight and get back into akl my lovely clothes. Ive learnt my lesson the hard way. I know my health is the most important thing but still my weight issues are at the forefront of my mind and that won't ever change but what has changed is that im now doing what I should he doing to get better and my family still have a daughter/sister/auntie. My mum was diagnosed with cancer while I was in hospital in greece. My family couldn't bare to tell me until I was safely home. She is doing well now...still poorly but hopefully on route to recovery......I have to stay well for her...it stops me feelibg sorry for myself.....I know this has heen a long winded story but please please please learn from it and start looking after yourself. Iwas minutes away from dying. This could so easily happen to you with no warning...perhaps you wont be so lucky. I wish you luck. Youre not alone with how you feel. Its really hard work to change your mind set but its worth it to still be hear for everyone I love and care about and those who love me back. Xx
 

Laura1976

Member
Messages
22
Type of diabetes
Type 1
Ashton I'm so glad you have taken the time to respond to my post. Your story has brought me to tears. I would firstly like to say that I hope your mum feels better and recovers quickly. My thoughts are with you and your family at this difficult time. I am so sorry that your holiday was ruined however I am relieved that you got the treatment you needed which saved your life (and am sad that it took this to be the wake up call for you). You are lucky that you have such a supportive family which I also have. Thats part of why I feel so guilty all the time....I'm doing this to them as well as myself. Most of my family do not know that im diabulimic except for my sister and husband, but to be honest they do not know to what extent I'm omitting my insulin. (I should takec1 long acting each day and 3 shortcacting before my meals. I always take my long acting every day but never the others). Ive had really high ketones a few times but have always managed them myself with insulin and lots of water, however as soon as theyve gone I stop my insulin again. Whats really comforting about your post is that I thought I was the only person to be this way and now I know that im not. I feel like im lying to all my family, well let's face it I am arent I. Like you, I know that its a mind set and I have to change mine. Im so glad you've managed to turn things around for yourself Ashton and hope that you are feeling like your ild aelf soon. I will keep you informed of how I'm getting on. I know it will be a long and very difficult road for me but you have given me the inspiration to make a srart on that road and I can't thank you enough xx

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Dusk71

Well-Known Member
Messages
104
Good luck Laura. I'm glad to see you are going to take those steps to improve things. After all 37 is still very young... Life is much happier when we feel/are healthy xx


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Laura1976

Member
Messages
22
Type of diabetes
Type 1
Ashton I'm so glad you have taken the time to respond to my post. Your story has brought me to tears. I would firstly like to say that I hope your mum feels better and recovers quickly. My thoughts are with you and your family at this difficult time. I am so sorry that your holiday was ruined however I am relieved that you got the treatment you needed which saved your life (and am sad that it took this to be the wake up call for you). You are lucky that you have such a supportive family which I also have. Thats part of why I feel so guilty all the time....I'm doing this to them as well as myself. Most of my family do not know that im diabulimic except for my sister and husband, but to be honest they do not know to what extent I'm omitting my insulin. (I should takec1 long acting each day and 3 shortcacting before my meals. I always take my long acting every day but never the others). Ive had really high ketones a few times but have always managed them myself with insulin and lots of water, however as soon as theyve gone I stop my insulin again. Whats really comforting about your post is that I thought I was the only person to be this way and now I know that im not. I feel like im lying to all my family, well let's face it I am arent I. Like you, I know that its a mind set and I have to change mine. Im so glad you've managed to turn things around for yourself Ashton and hope that you are feeling like your ild aelf soon. I will keep you informed of how I'm getting on. I know it will be a long and very difficult road for me but you have given me the inspiration to make a srart on that road and I can't thank you enough xx

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Thankyou for your support xxx
 

brooketypeone

Member
Messages
13
hi lovely,
I have felt like not taking my insulin so many times to keep weight off! but it seriously not the right thing to do:) get back on the insulin! it's never too late, image isn't everything sweetie, your health is:)
stay strong gorgeous xx


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Rebecca24601

Newbie
Messages
3
I'm a newly diagnosed T1 (~9 months) and I wish I'd never found out about insulin manipulation. I used to struggle a lot with my eating habits, but I got better. When I was diagnosed, I got a real thrill out of readings that were in the right place, I guess it made me feel like I could control my body. But then I noticed that I can't seem to stop retaining weight and it's impossible to drop, and shortly after this revelation, I found out that not taking insulin would actually help me lose weight. I know exactly how you feel- it's a tug-of-war between your rational side, which warns of the consequences and complications, and this irrational niggling feeling that you can't quite place, which tells you that the grass could be greener.
We both of us need to ignore our irrational sides. Later in life we can either look back and be grateful that we stayed strong and in control of our diabetes, or else be angry at our younger and more reckless selves. I've done my research, and it really isn't worth the complications and pain possible here. I found a really useful site which might be worth a look- http://www.dieorbeatthis.org/ - sounds depressing I know but there's loads of interesting stuff on there.
One day at a time? Here we go.. xx
 

Lucypieee

Well-Known Member
Messages
227
Dislikes
Diabetes
I wrote a blog post about my struggle with Diabulimia in June; lucypieee.wordpress.com/2013/06/10/unrecognised-but-oh-so-real

It's an on-going struggle, but since I started taking my insulin, testing, eating well and exercising, I've actually lost weight and I don't feel run down and like I have no energy as I did when my BG was running constantly high.

I developed Maculopathy in both eyes because of how I neglected my body and I've had laser treatment for it, however, the situation has since reversed and the damage done to my eyes is gone.

Despite complications, it's NEVER too late to turn it around. You've done the brave thing and sought advice and help, I found taking everything one day at a time worked well for me. Try setting yourself goals and write down every single injection you do throughout the day.

I've since moved onto insulin pump therapy, which also helped, when I decided I wanted to try it, I knew my consultant wouldn't consider me unless I actually tried to take care of myself (NICE criteria meant you need to take at least 4 injections and blood tests a day to show you've tried to maintain control), I started having hypos because I was on too much insulin. I had to remember to rotate my sites and bloodtest. But I did it, because I had a goal at the end.

I hope you get through this, it's an awful thing to suffer through and it's a daily struggle doing what you know you should do.
Lucy x


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andrianna1981

Member
Messages
14
Hi I've just read your posts and I'm beginning to realise I am not alone.I to skip shots on purpose it started when I had my thyroid removed I'm terrified if putting on all the weight I struggled so badly to lose before I has the op.I'm too ashamed to tell anyone what I'm doing to myself and I'm trying to stop. I also suffer with fibromyalgia which is a daily struggle in itself. Please keep posting so I can see your progress I hope it will help me to help myself too. I can't actually believe I'm writing this now I'm so embarrassed :-(
 

daisydaisy17

Newbie
Messages
2
Hi Laura, just read your post. I'm 17 and have had diabetes for 8 years and have had very similar problems. I haven't been injecting properly for the past few years because I want to keep my weight down but have also felt, 'what's the point? I'll die young anyway so I might as well just do what I like.' I've had counselling to help me but it hasn't had any effect. It's a subconscious part of me now that just eats without even thinking about diabetes. It has always been and always will be at the bottom of my list of priorities.


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Mimastones

Member
Messages
16
Type of diabetes
Type 1
Treatment type
Insulin
Dislikes
Diabetes.
NEVER GIVE UP. Why diabulimia is not more widely recognised I do not understand. I have suffered with it for almost 7 years, since I was diagnosed and realised that insulin was makin me put on the weight I had lost pre-diagnosis. I'm finally beginning to take some control but I have to admit the amount of weight I've gained since controlling my diabetes has caused me massive depression. Us girls need help. The NHS needs to reconise this as a mental health issue, not just giving us a slap on the wrist and telling us off for poor control.
 

Loubrooks07

Newbie
Messages
1
Hi Laura I totally understand what you are going through I'm 33 and have type 1 diabetes for 22 years. I used to skip insulin and eat what I wanted. I lost 2 stone and felt brilliant. Well I did when I looked in the mirror but on the inside I was dying. My hba1c was 13 and everyday was a struggle to even get out of bed. I was always out of breath because my blood sugar was so high. My wake up call was in sept 2011 when I tripped and hurt my big toe. It didn't heal and I ended up having it amputated. I also had a broken heel bone and was on crutches for 4 months. After that I broke every bone in my other foot because my bones are so weak due to poor diet. I now have a toe missing and metal plates in the other foot. I have had 5 sessions of lazer treatment on my eyes all because I didn't look after myself because I loved being thin. Please please listen to all these stories you are not the only one and won't be the last. I'm now on the insulin pump and feel healthy everyday. I've put weight on and I hate it. But knowing I will live longer makes me realise its worth it. Sorry if I have scared you but maybe this is what you need to turn your life around. I wish I had gone on the pump sooner then maybe I could still wear my heels and have pedicures x
 

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.
Hi Laura

Your post inspired me to finally activate this account so I could reply! I'm 47 and have been Type 1 for 27 years. I never really got to grips with it and carried on my life, as normal. I partied hard, took my injections when I felt like it, suffered from diabulimia (although I didn't know the word for it, then) and generally didn't look after myself very well. All this whilst raising a daughter! She saw me in some states that i'm not proud of and had to call 999 on a couple of occasions due to DKA.

Fast forward to now and I still wouldn't say I've nailed it. It's a daily struggle to achieve anything like near normal readings but I keep trying. I've got pre-proliferative retinopathy (but thankfully nothing worse has developed), I've got quite bad peripheral neuropathy, as well as autonomic neuropathy, (again, never heard of this until I got it!), I've had partial foot amputations on both feet and have spent far too much time in hospital!

I always had HbA1c's in the mid-teens but was complacent about it. As i'm getting older, the reality is striking home. At my last test i'd got my HbA1C down to 8.6, still high but moving in the right direction. I try to educate myself about the condition and the physiology of my own body as much as possible and am currently interested in the low carb way.

My main point in this post is to say, yes, I messed up and the damage's done. But, by taking charge of it now, I can slow down or arrest any further complications. It's never too late. No-one else can do it for you. You decide whether to have a jab or not. Decide to! And don't beat yourself up if you don't, that only adds to the downward spiral. I wish you all the best and really hope you find a path to better management.

Julie
Julie
 

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.
As an aside, if taking your quick acting Insulin is a problem, why not consider a lower carb diet? I don't always low carb but I have days where I do and I get a real kick out of having a meal that I don't have to inject for! For example, Omelette and salad or fish and steamed vegetables. There's loads of recipe ideas out there. Here's a link to the Diet Doctor. He has some good info on there.

http://www.dietdoctor.com/

Again, good luck.

Julie