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Saw the BBC 3 programme

C

curly

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Hi - just saw the programme on diabulimia on iplayer. Really upsetting. I don't have diabulimia, but I do have 'standard' bulimia together with type 1 and have spent literally the whole weekend bingeing and purging. Can't seem to get a grip on it. Not really had more than a couple of months healthy for the last 14 years. Feeling at breaking point - no energy, becoming overweight, mental health in the gutter, only just maintaining normal life. Always take my insulin and take extra to compensate for binges...but, still pretty impossible to get good control with the amount and type of food I am eating on a regular basis. No point getting 'proper help' - been there, done that, makes no difference. Need to get myself out of this. Really think it's nothing more than a habit, but for some reason can't break it. Hope I can use the forum as part of getting through it. Thanks.
 
Hello Curly and welcome to the forum. While I cannot give you any advice, I can tell you that the good people here will help and support you in your efforts to improve your well being. Read around the forum and stand by for comments, you are not alone.
 
Hi @curly. Welcome to the forum. I could start going on about focus, trying this, trying that, taking little steps, taking big steps but I suspect you've been there already.
Ultimately only you have the solution. Hopefully they'll be one person on the forum who can put the right words in the right order to strike a chord that helps you.
Your post says everything, it's not that you don't know the problem. It seems to me that your diabetes, that demon inside has manifested and taken control. I really don't know but maybe instead of focusing on diet and control try to understand how you perceive and live with your diabetes.
For me my diabetes is my biggest ally in life.
Good luck and I hope you find the answers you seek.
 
Welcome here Curly This is a good place to share problems when one is diabetic , you problem do affect your diabetes. I Think it is okay to share and maybe ask for advice

I dont have any great suggestions But will anyway suggest you try to eat a huge amount of proteins for breakfast because I somewhere read that People that who eat lots of proteins early in the day are less likely to overeat later in the day , This is surely not enough But Then you have at least had your basal building Blocks before things gets too much out of hand later in your day ... wish you all the best ok your way dear
 
Thank-you
 
Thanks for your response, you are entirely right. I've been everywhere it's possible to be in the last 14 years, tried everything there is to try (clearly not hard enough) and I believe it has to be me that turns it around. The solution is as simple and as hard as do not put that stuff in your mouth.

What you are saying about switching focus to how I perceive diabetes is interesting - thanks. I've not really thought about it, as you just get on with it from the minute you are diagnosed, don't you? There's no time to go away and have a think and get used to the idea and then come back to start dealing with it. But, now I do think about it, I hate it. I hate everything about it and I feel completely lonely and isolated with it. There is no-one in my life who has any idea about the ins and outs of it. Even my parents are completely ignorant. For example, if I have a hypo when I'm with them and mention it they either completely ignore it and carry on conversation as if nothing's happening, try to get me to take insulin, or when I say it's not a question of insulin it's about needing sugar they'll try to make me eat celery/lettuce or something similar because sugar is 'bad for me'. Then at work they're at the opposite end of the spectrum and start panicking and talking about going home whenever I happen to get my glucose meter out or drink a bit more than usual. It all drives me crazy.

The irony is that I know exactly how to manage my blood sugar and don't find it that hard to get consistently good levels when I'm eating properly. But I just can't go for long enough without severe bingeing and purging episodes to maintain. I'm constantly in a state of recovery from the last super binge and just as I start to get better I head straight into the next one. The binges will last anything from 1 day to a couple of weeks straight. I'm bingeing so much currently that I'm too exhausted to do anything but drag myself to work to keep a roof over my head, so no exercise which also does help enormously.

Perhaps if I could view my diabetes more positively, as you are doing, I might have more success. I think there's something in that. Maybe I am rebelling against it because it causes me so much anger. I realise this must all sound completely pathetic to those of you are coping better, and like I just need to get a grip and sort myself out (which I do), but somehow it's not as easy as that. I don't know why.
 
Thanks very much!
 
Hi Curly - I'm really sorry to hear you're in something of a loop with your eating. As someone who had a eating disorder, anorexia in my case, some years ago, I know how it feels to know something simply has to change, day after day, but just not being able to do it.

That was, for me, well before I became diabetic, so that was one thing I didn't have to juggle.

In the end, I did end up having inpatient treatment for quite some time, because I was really rather ill, and it did help me, but of course, over the longer term, a bit like managing our diabetes, we're the ones who have to manage ourselves and maintain the changes we make.

It really is possible to make the changes and maintain them long term, but it isn't a quick process, but that you are trying and reaching out is extremely positive because it shows you have begun your journey to recovery.

I'm going to tag @asortafairytale , who is one of the specialist mods for this part of the forum, and hopefully she'll be able to comment specifically for you.

If you ever feel you want to contact me, just send me a Private Message.

I really, really wish you well. You're not in the best of places right now, but you can leave it behind. Truly you can. Dig in there.
 
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Thank-you!
 
Hi @curly. I fully understand everything you've just said. No one really understands, everyone gets it wrong. As diabetics we are on our own within 99% of society.
I always say ..... no one knows diabetes like a diabetic knows it. Consultants,DSN, parents ,partners no one fully gets it.
I think you should stay with us on the forum, I along with so many others do understand. I'm no expert on what you're going through but fully understand how you're feeling.
From my initial diagnosis I've always embraced my diabetes, I use it to inspire me to do things in life, I've been very lucky that it's worked that way for me and fully appreciate its easier to probably say than do.
Instead of fighting your diabetes each and everyday ( let's be honest it's a war you'll never win ) try and embrace your diabetes, make it your friend, make it the reason that you're a fighter, make it the reason you live and succeed.
Diabetes i believe is 80% emotional/ mental 15% medication and 5% winging it.
Hope this gives you something to consider.
You can do it.
 

Two years ago I bought a blood glucose monitor, I took my own blood sugar, the answer came up well out of range . I put the monitor back in the drawer , refused to think about it. Over the course of that next year, I lost a lot of weight, I put the same weight back on. I spent most days in a complete tizz, knowing I was ill, fearing to even look up what it was going to do to me , avoiding going to the doctor, spending my mornings feeling sick, my afternoons sleeping and my nights unable to sleep and eating god knows what - mainly carbs. Then I got the diagnosis and I spent a couple of days reading up on things. One paper stuck in my mind - One woman who had achieved so much by adopting a 70% fat diet and a light bulb went on.

I though - ****** me - if she can do it then so can I. I threw away the carbs, I went out and bought bacon . eggs, tomatoes, mushrooms and butter and I ate them whenever I felt hungry, within a very few days I started to feel better II made sure if I was going to binge - then it would be more bacon and eggs or a huge steak.

You already have your answer - you know what you can eat, you know how to do this, you need to find your light bulb moment. You came to the right place to find it , there are so so many people here with success stories. You don't need to feel alone because practically every one of us battled some personal demon to get us to where we are today, and every one of us knows this is a fight for life in an ongoing battle to fight the damage that modern life did to us.

None of your current situation is your fault, its the fault of years of bad dietary advice and the sale of foods not fit for purpose. but you have the power to stick it to the world, by showing that you can beat it

Have a look around and see if you can find something that resonates with you.

.
 
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@curly - May I ask how long you're been diagnosed with your T1, and if that was before or after your eating became disordered?
 
Thank-you so much to everyone - I never expected to get so many responses, let alone so quickly. I really needed that tonight. Your thoughts will help me to pick myself up again tomorrow and do better. If you can all cope, than so can I. Just need to get into a better place with it.

@DCUKMod - I was diagnosed just over 10 years ago, so after the ED. But, I had the ED pretty much under control until the months leading up to diagnosis - was bingeing and purging perhaps 2 days a month on a much smaller scale and that was manageable. Went a bit haywire again in the months before diagnosis, which makes sense because I wasn't getting any fuel into my cells. Then for some reason was much better in the first couple of months with insulin, maybe because I was so scared or because the 2 Novomix per day made it so hard to control levels. The minute I was trusted with the basal/bolus and told I could eat whatever I wanted and adjust my own insulin it was like the demon descended. I actually remember stopping at Sainsbury's on the way home from the hospital and bingeing on anything I could get my hands on like I'd never eaten in my life before. That was just under 10 years ago and I've had better periods and worse periods, but never anywhere near recovered with it.
 
Your half way there, you have spoken about what wrong, everyone on here are lovely and will help just keep asking questions everyday if needed, I could never tell anyone about my problems with food I have got better, only after reading items on here, keep reading and you will get there thinking of you
 
@curly it's great that you've joined the forum - welcome, and have some hugs.

Food and I have a complicated history, and I absolutely get where you're coming from.

I watched the programme this evening, and found it very sobering.

You're among supportive friends here. It's good to meet you.

Love Snapsy
 
Brain scrambled after managing the DWED social media accounts today and it is gone 3am but promise to read through this properly and give my input tomorrow x
 
Hi @curly
welcome to the forum !!
I just want to say how brave you are for sharing , and I hope that knowing you are not totally on your own and that you have people ( like me ) that truly care and can understand the battle -- that may form the start of positive steps to battling this

paul ( himtoo )
x
 
Hi there, this is a forum for all eating disorders in T1D so obsolutely you should post here. I'm sorry you're struggling so much at the moment, for what it's worth I spent around 2 decades of my life with EDs, AN, BN and later Diabulimia and I did eventually manage to get out even when I thought there was no hope. For me at least I had to realise that I couldn't 'think' my way out of it, I kept on seeing it as a weakness, as something to be ashamed of. When I look back now I can see how mentally ill I was but I had convinced myself that one day I would just wake up and a lightbulb would go off and I'd be all better, I would have seen the light. In my experience it never works like that. I have been working with those who have T1EDs for nearly a decade now and it is always a process. Part of that process is accepting that this is an illness, just like type 1. You can't ask a schizophrenic to just stop hearing voices, and you can'task us to just eat like a normal person. That's our illness,. Like you I had 'proper help' that was no help at all, which is why I started DWED in the forst place, but things are much better out there now, can I ask what sort of help you accessed, if your diabetes team know what is going on, do you have anyone at the moment who you trust to talk to about this and have you read any books for type 1 eds or type 1 and psychology in general?
 
Hi. Big hugs to yiou. I saw the programme too and it took me back to my bad days aged 15-31 years when I was a raging bulimic. Although I never restricted my insulin I did not care about my sugars either. For what it is worth I do not think you can do this solo and it sounds like you beat yiurself up about not controlling this bad 'habit' just like I used to try very hard to be perfect with food and blood sugars then failed dramatically and really hate myself I am 46 now and feel as if I wasted my 20s on bulimia so please carry on trying to get supoort however you can even if it hasnt worked before. You must tell yourself that you are worth the effort and eventually you may believe it.xx
 

Hi Jacq,

I've just been reading this thread and what Curly said is exactly what I'm going through- I had bulimia non purging since the age of 12 where I would diet excessively losing weight very quickly and then severe episodes of binging which could last weeks or months. Then when I was 21 I was diagnosed with Type 1 which completely exaserbated things and have been living in hell ever since I'm now 25. I have been through DBT and CBT at an eating disorders clinic but much like other people here I found none of the NHS professions knew anything about T1. The BBC documenaty really struck a cord with me and I'm just wondering where to turn, I've almost given up hope. Can you recommend any books to me? I've read dozens of books on ED recovery but none that relate to T1.

Thank you,
Lucy
 
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