do you think there is enough information regarding diabulima?


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    18
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sarahpench

Well-Known Member
Messages
57
Type of diabetes
Type 1
Treatment type
Insulin
Hi everyone been away for my birthday sorry haven't been around much! Would like to say 1St of all thank you to each and everyone of you for posting this is why I wanted this set up to help and support each other call me a sap but feel so emotional at the response we've had makes the hard work worth it ! I've messaged kelly personally because it's already daunting enough being newly diagnosed as we all know. I still find it shocking at the lack of help and knowledge but will do our best to get more awareness and I'm so glad to see you sharing you're stories hope everyone has had a good weekend , have a healthy and happy week, if anyone wants a rant chat or get stuck this week you know where we are xx
 
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sarahpench

Well-Known Member
Messages
57
Type of diabetes
Type 1
Treatment type
Insulin
So glad to see a dedicated section of the forum for this! I just want to say I'm so sorry about how many people are suffering with this, and to add to the number of people who are fighting it alongside you.

I was diagnosed type one aged 12, and am now 27. Suffered with diabulimia from pretty early on but wasn't really aware of it, just thought I was a bad person who couldn't do what she knew she had to. It was probaby about 12 years before I even heard the term diabulimia and learned that it wasn't just me. Jacqueline Allen and DWED are fantastic and the work they do sounds challenging, and it's great to see you've started there too Sarah :)

What I find frustrating, is that when I learned that it was essentially an eating disorder, I spent months trying to build up the courage to tell my doctor or nurse. When I finally did it, they were absolutely useless. They had no idea how to help, and although they offered to recommend psychological help, they couldn't refer me for it themselves so a recommendation was sent through to my GP, who then sent it to the local mental health services and they wouldn't see me because I'd already had therapy in the past (unrelated) and they didn't have the funding for me. A big part of this, is because most of the mental health services people are not knowledgeable about diabetes and do not understand how dangerous it is. So the diabetes team didn't do the psychological support and the psychological team didn't understand the diabetes part (luckily they're making progress here now). Anyway, I fought and fought (with the help of my family, thank god) and finally got therapy. I've had a few different types and only just found one that's working for me (It's only been a few weeks that I've been doing well but keeping my fingers crossed that I can keep it up), but in the meantime the last diabetes consultant I saw literally said "well it looks like there's nothing we can do to help so should we just discharge you?" (bearing in mind I've had a HbA1c of over 10 consistently for around 13 years and now have maculopathy). The only thing the diabetes team ever did in terms of trying to 'help' me with the eating problems was to constantly remind me of how I would die or go blind or lose limbs if I carried on doing what I was doing. And that fear was exactly the reason I had the eating disorder in the first place (that and my fear of hypos), misuse of my insulin was the only way I ever felt in control. When I try to do things properly, I never know what's going on, I go from low to high and back again like a yoyo and feel helpless and like nothing I do makes a difference. What I was doing with my insulin might sound stupid (and was definitely illogical) but at least I KNEW I wouldn't go low. It was the only time I could guarantee it.

Anyway the three key things I have learned over the years are:
1. Fear doesn't work. I thought the beginnings of background retinopathy would surely be the kick I needed to sort my life out. It wasn't. I needed help, and the fact that I wasn't getting it did not mean it was my fault I wasn't managing better.
2. For me, I HAVE to be on a reasonably low carb diet for the recovery to work. Trying to 'limit', 'cut down' or 'eat in moderation' did not work for me- eating sugary food made me feel high (good high not hyper) and settled my anxiety. If I had a tiny amount I couldn't stop. After the worst part (the first week) of cutting out sugar completely the compulsion to eat almost disappeared. I do crave sugar if I eat a carby meal, but it's much more manageable. But low carb avoids that trigger.
3. You have to persevere to get the therapy you need, and if/when you do, be prepared for it to not be a quick fix. I spent a long time desperately trying to reach the end goal (i.e. managing my condition) and getting frustrated that it was taking so long. In the end, thinking more about who I wanted to be rather than who I thought I was or what I wanted to achieve was much more effective. (For me, hypnotherapy and acceptance and commitment therapy have been the successful types).

Love to all :) <3

Keep fighting and never be afraid to have a good cry/rant! xXx
Hiya it's so shocking isnt it the response from medical professionals still shocks me! They have no idea what effects it has emotionally thank you for sharing your story! Welcome to this mad place haha but I am also glad for this forum hopefully it helps xx
 
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lizziewizzie

Well-Known Member
Messages
100
Type of diabetes
Type 1
Treatment type
Insulin
Hi @sarahpench,

Well done for trying to increase awareness of this issue. Please let us know of any fundraising events you are part of etc so we can help as much as possible.

I suffered with an eating disorder for around 12 years before I managed to start recovery about 5 years ago. I was diagnosed with diabetes in December 2015, so am still very new to diabetes. Since being diagnosed I am struggling with my old ED thoughts, carb counting, unit counting and weighing food is all bringing it back to me. I often think about omitting insulin to help lose weight, but I know when I'm older it will have awful consequences so am trying not to. I'm 29 years old, I have a professional job and a supportive partner. Mental health issues and eating disorders can happen to anyone. Awareness and support is necessary and I think you're doing an amazing job. Keep up the good work! xxx
 
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Missy Cat

Member
Messages
12
Type of diabetes
Other
Treatment type
Insulin
hi guys
I am wondering if there are any people suffering with diabulimia??
or if you are even aware what diabulimia is??
for people who are not sure, it is when a diabetic manipulates their insulin doses to lose weight this may include stopping altogether. i am trying to find out how many people are aware of this as I strongly believe there is not enough being done about this life or death situation especially in the UK. I would be grateful for any feedback.


thanks.
Sarah

Hi All

I was only diagnosed with Diabetes in 2014 so still a newbie really. My DSN did warn me straight away that I would gain weight by going on insulin. To say I was unimpressed was an understatement. In February 2015 I noticed that I had gained weight so I started to miss my bolus when I ate to help lose those pounds. It worked!! This went on for two months before my hubby realised and gave me a "grilling". I slowly got back to taking my bolus again and have managed to maintain my weight. I wouldn't consider myself diabulimic but I think had I not had the help and support from my Hubby then I definitely would have continued down this route. I would like to point out that I only heard of the term Diabulimia a few weeks ago and I am shocked at how many people are suffering. To be honest at the time I thought I was just being "bad" and probably still in denial that I even had diabetes!

My weight is not an issue at the moment as I am severely ill with Crohns disease but I know that once this is sorted and I have time on my hands (and time to think) then the weight issue will always be in the back of my mind. Right now being in control of the diabetes is very important to me to help me heal and recover from major surgery.

It's fantastic that we have a topic on here for Diabulimia, heartwarming and sad at the same time. Well done @sarahpench for your hard work and commitment to this!

Hugs to all xxx
 
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zoze_j

Well-Known Member
Messages
163
Type of diabetes
Type 1
Treatment type
Pump
Dislikes
Moths & mushrooms!
People who are ignorant towards diabetes :(
Animal cruelty
People who use their mobile phones whilst driving
One thing that has actually helped me a lot with my diabulimia is being put on Forxiga (dapagliflozin), this is a medication that turns some of the sugar in your blood into sugar in your pee, a bit like what happens when blood sugar is high only the medication does this without the blood sugar being high.

Knowing I am excreting around 500 calories a day in my urine from the carbs in my food, has helped me to psychologically accept being on insulin a bit better especially as also helped me to lose weight.

It may not be the solution for everyone but for those suffering with weight gain associated with an insulin regime it may be worth enquiring about with your doctor.

I just saw this post. Thanks for sharing! The problem with EDs is that you never truly get over it. There's always that voice in your head telling you that you need to lose weight. Ie been struggling a lot lately, but I'm going to speak to my doctor about this med you've mentioned, how long have you been taking it?
 

sarahpench

Well-Known Member
Messages
57
Type of diabetes
Type 1
Treatment type
Insulin
Hi everyone hope all has had a good weekend! Been a busy one for me trying to organise a swim at the local leisure centre to raise a bit of money for Dwed hopefully will be in the 2nd week of July I better start practicing now ! Glad everyone's posting here as and have a had a few messages off people saying they are finding it helps having somewhere to chat If anyone is struggling remember we are here for any reason! Proud of you all
 
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sarahpench

Well-Known Member
Messages
57
Type of diabetes
Type 1
Treatment type
Insulin
Hi everyone sorry haven't been on here been unwell with dka due to chest infection and steroids! Hope everyone is doing OK ♥ x
 

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himtoo

Well-Known Member
Retired Moderator
Messages
4,805
Type of diabetes
Type 1
Treatment type
Pump
Dislikes
mean people , gardening , dishonest people , and war.
why can't everyone get on........
ouch !!! that looks painful sarah !
glad you back on -- have missed you :)
[[[[[hugs]]]]]
 

sarahpench

Well-Known Member
Messages
57
Type of diabetes
Type 1
Treatment type
Insulin
ouch !!! that looks painful sarah !
glad you back on -- have missed you :)
[[[[[hugs]]]]]
Thank you!! Yes very sore arms are so bloody swollen hopefully on the mend now and back with you all xx
 

AmandaD

Well-Known Member
Messages
109
Type of diabetes
Type 1
Treatment type
Pump
I only became aware of this a couple of years ago. I lost 7.5 stone through restricting my insulin big time, it took me a year. My HbA1c went up to 12.4% . My consultant knew I had taken the hand off my control and said nothing he was just happy I had lost weight. I have now regained 3 stone and am miserable as hell. I still have weeks when I restrict my insulin big time to put me in ketosis. I've tried low carbing, no carbing, high protein the lot and just can't shift weight without restricting my insulin. Its a vicious circle that I feel I am stuck in. Thankfully I have no complications but am fully aware that what I am doing is wrecking my body.................
 

eddie1968

Well-Known Member
Messages
3,661
Type of diabetes
Type 2
Treatment type
Insulin
Dislikes
Pasta, sorry to me it's vile, yeuch lol (and full of nasty carbs)
hi guys
I am wondering if there are any people suffering with diabulimia??
or if you are even aware what diabulimia is??
for people who are not sure, it is when a diabetic manipulates their insulin doses to lose weight this may include stopping altogether. i am trying to find out how many people are aware of this as I strongly believe there is not enough being done about this life or death situation especially in the UK. I would be grateful for any feedback.


thanks.
Sarah
Never really heard of this and would like to know how prevalent it is. I know some T2's who have bulimia but not playing russian roulette with adjusted/missed insulin doses. Might be a problem to those T2's on insulin taking more than indicated. Interesting. Good luck ! :)
 

JodieAntonia

Newbie
Messages
1
Type of diabetes
Type 1
Treatment type
Insulin
Hi Sarah,

I'm a type 1 diabetic since 2012 and I suffered with Diabulimia to the point where I was in a coma. I agree with what you have said, there is no help and support. I was told I was 'non complient' and 'bad' but the truth was I had no control and I wasn't thinking straight. I tried to explain this to people but they told me to stop being silly and It went ignored. I am better controlled then I was but I still have trouble with it but people tell me (including the doctors) that I just 'have to get on with it' and 'not do anything stupid'.

I don't know if that will help with your research but If you want to ask me any questions just send me a message :)
 
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Pilzy-89

Well-Known Member
Messages
53
Type of diabetes
Type 1
Treatment type
Insulin
I have found it hard to find support and others who have suffered with diabulimia but I came across an article today (http://www.mirror.co.uk/lifestyle/health/worrying-trend-diabetics-skipping-insulin-8269372) that shows awareness is being raised and it is recognised (finally). Now that I am looking to start a family I am getting it under control - argue with myself a lot as I have put on 2 stone since taking my insulin as I should, which is hard, but there is a greater goal. I realise how much I have gambled with my future health and hope I haven't done too much damage that will surface later on. I wish I had someone to speak to sooner - it has been 10 years of me neglecting my diabetes and telling myself it's not important as long as I was thin.


Sent from my iPhone using DCUK Forum
 

himtoo

Well-Known Member
Retired Moderator
Messages
4,805
Type of diabetes
Type 1
Treatment type
Pump
Dislikes
mean people , gardening , dishonest people , and war.
why can't everyone get on........
I have found it hard to find support and others who have suffered with diabulimia but I came across an article today (http://www.mirror.co.uk/lifestyle/health/worrying-trend-diabetics-skipping-insulin-8269372) that shows awareness is being raised and it is recognised (finally). Now that I am looking to start a family I am getting it under control - argue with myself a lot as I have put on 2 stone since taking my insulin as I should, which is hard, but there is a greater goal. I realise how much I have gambled with my future health and hope I haven't done too much damage that will surface later on. I wish I had someone to speak to sooner - it has been 10 years of me neglecting my diabetes and telling myself it's not important as long as I was thin.


Sent from my iPhone using DCUK Forum
thank you so much for sharing that information @Pilzy-89 .
It is very heartfelt and helpful to anyone reading this sub forum.
 

Cookie16

Newbie
Messages
1
Type of diabetes
Type 1
I've been doing this for over 20 years & I still believe In my head insulin makes me fat so I stay underweight with lack of injections. I can hardly bear giving myself insulin as I see it as my enemy. Can't imagine anything changing now but I also know it's a form of self harm with all the complications I have now experienced. My hospital has always been fully aware of this but any of their warnings have never deterred me from my goal ...... staying thin. It's so ingrained in me that I would rather die thin than put any weight on. It's just a way of life now but I always feel guilty as none of my family or friends know & never will
 

Juicyj

Expert
Retired Moderator
Messages
9,009
Type of diabetes
Type 1
Treatment type
Pump
Dislikes
Hypos, rude people, ignorance and grey days.
Hello @Cookie16 - welcome to the forum and thank you for sharing what is an extremely personal story. I am bumping your post as we now have moderators from DWED who are on the site who will respond to your post, so tagging @jacqfromdwed @PurpleStarfromdwed
 
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himtoo

Well-Known Member
Retired Moderator
Messages
4,805
Type of diabetes
Type 1
Treatment type
Pump
Dislikes
mean people , gardening , dishonest people , and war.
why can't everyone get on........
Hi @Cookie16
I just want to say Hi and welcome --hopefully we can be a shoulder if you need one !!:)
 

jacqfromdwed

DWED Support
Messages
24
Type of diabetes
Type 1
Treatment type
Pump
I understand where you are coming from and it's really easy to believe that things will never get better but it's never too late to make things better. I wonder if you are seeing anyone from the psych side. Its great that you are honest with your D team but really you need psychological specialists to help you tackle this
 

Amandapodevin

Newbie
Messages
3
Type of diabetes
Type 1
I have suffered with this for many years off and on. I'm currently fighting this at the moment and I don't feel like this condition has enough support as it's not recognised enough. I'm t1 on insulin and metformin as I'm now insulin resistant
 

himtoo

Well-Known Member
Retired Moderator
Messages
4,805
Type of diabetes
Type 1
Treatment type
Pump
Dislikes
mean people , gardening , dishonest people , and war.
why can't everyone get on........
Hi @Amandapodevin
welcome to the forum !! :)
a big hug from me for taking time and being brave to post.:)
I am going to tag @jacqfromdwed to come along and say Hi as well.