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Introduction

  • Thread starter Thread starter gemma6549
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gemma6549

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Hi Everyone,

Just thought i would introduce myself as i'm new to the forum. I've been a type 1 for nearly 14 years now. I was diagnosed aged 16 which for me was pretty unfortunate timing. I was beginning to put more emphasis on my appearance, weight and boys! when suddenly my life became all about food, what I could and couldn't eat etc and slowly my weight crept up over the next 4 years.

So at 20 I made the foolish decision to stop my insulin, I caught a few minutes of a programme on TV where a woman who was also type 1 had lost her sight because she stopped her insulin to lose weight.

The loss of vision didn't really resinate with me but the idea of some rapid weight loss did.

So that was my life for the next 6 years, no insulin! constant ketoacidosis, too weak to leave my bed, bedsores, joint pain, a tumour in my liver, a damaged oesophagus, abscesses and surgery to remove them. But it was all worth it right because i was skinny? (too skinny)

In a word. NO! ive now been in recovery from this form of eating disorder and destructive behaviour for 2 years and 3 months. It hasnt been easy but i now know i would never ever do that again and wish i hadnt started.

I developed insulin neuritis from re-introducing my insulin, the pain was unbearable, i spent 12 months in bed or a wheelchair on a high dose of morphine just to function. I would have 3 or4 baths during the night to distract me from the pain. I became incontinent with both my bladder and my bowels! and did some damage to my eyes.

The good news is that was all temporary and now 2 years on instead of the 58 tablets a day i was taking to manage all of that damage im now just on my insulin.

Im saying all of this because i want people to know how dangerous it is, and that recovery is possible, i was lucky in that the damage i did wasnt lasting, but i know others who have come off a lot worse, some are no longer with us.

If you recognise any of those feelings please do seek help, more and more is being done to highlight diabullimia and you can contact www.dwed.org.uk for help.

If you have any questions about my journey or recovery feel free to message me.
 
Hi Gemma and welcome to the forum.

That takes a lot of courage to talk about diabullimia like you have and I applaud your reasons for doing so, really pleased that your finding your way back to good health and hope this continues to be the case. Take care.
 
I'm new to the site and like you I was diagnosed in my teens and I've spent 18 yrs causing myself all kinds of complications I have neuropathy in my feet and lower legs which means constant pain I have autonomic neuropathy which effects my blood pressure ( too low ) so constant dizzy spells it also left me with incontinance I have to self catheterise and my bowels are effected too :( not at all glamorous at 5"7 and 52kg I'm classed as slim but I can't run around with my kids I struggle to get around my own home I even bought myself a wheelchair to be pushed around shops on the rare occasions I do leave the house its a real struggle my body has eaten itself I have no muscle mass due to the constant DKAs so the simplest things are painful
My husband left me at the start of 2014 and though he helps me an awful lot I realised what I had done to myself and my family I nearly died twice from a simple urine infection and with 3 kids to think about at home I started digging myself out of this hole
My problem is my lack of help and support I have tried to explain to my docs nurses and dietitions and still haven't got anymore help I'm finding it a constant battle and to be honest seem to keep slipping back into old habits I know people think I should just think about my kids and do it for them but it's not that simple :( my last hba1c was 94 better then the 136 it started at but not good enough) guess I'm sick of failing and fed up that's why I registered here hoping to find the right answers I suppose ....
 
HI & Welcome, @Mia83 & @gemma6549 to the forum, you have certainly come to the right place for help & support. I'm not Type 1 so would find it a little difficult to help you directly.

I'm sure some type 1s will be along soon, there is of course a Type1 forum so don't hesitate to post there also.

Ask all the questions you want.

Neil:)
 
Hi Mia83

Your story is really familiar, I don't know if you've ever looked at the Dwed website? It was created by a lady who suffered herself and also lost several friends to diabullimia. She now dedicates her life to helping to get recognition for this type of eating disorder so more help is available. Getting into a place of recovery is really hard and I know outsiders looking in might question how you could risk your life when you have kids etc. But a lot of people don't understand that it's a mental illness. No matter how skinny I got it was never enough and now I guess I've realised that, that no matter how much weight I lost I wouldn't see myself any differently, so really what was I risking my life for? It was an image in my mind that could never be realised. I'm lucky that I still have my husband as I know I was the most miserable person to be around for those 6 years. But I kept what I was doing a secret from everyone.

Speaking about it like you are is an important step. Please do get in touch with Dwed as they will give you the support specific to your needs rather than just diabetes
 
I have been on the dwed site when I was trying to figure out exactly what's wrong with me and what I could do to sort myself out I know diabullimia isn't recognised medically though I did question this with my dietitions who just carried on telling me to try and eat what I can and have my supplement drinks when I can't which I found rather unhelpful though I have increased my weight from 7 stone to over 8 over the last year I find the lack of proper medical instruction really frustrating when I can eat I have trouble with my bowels and end up losing as much weight as I have gained and basically feel rubbish until my system clears if I have my drinks my blood sugars bounce everywhere I had a pre bed sugar of 18 and luckily my ex staying over to help with the kids called the ambulance at 8am I had a sugar of 1.1 and in and out of consciousness result scared to take my insulin due to hypos scared to eat because of weight gain and DKAs ( I know am not over weight but the fatty in the mirror disagrees) and the embarrassment of my bowels in public means I now barely leave the house and defo not on my own I am trying to conquer my problems but they less like a corner to turn and more like an ever decreasing circle
I'm glad you have found a strategy to get through it and I don't plan on giving up I have tried to get my family to understand even wrote letters like dwed suggested but don't think it sank in I do appreciate your reply and nice to know I'm not on my own thank you
 
It's a really difficult thing for people to understand. Because it's a mental thing and can't be seen people can't really understand it if they haven't been through it. A lot of the issues you're having with your bowels etc can improve once your sugars are good and remain stable, it just takes time. I know no matter what anyone says it can't make you go into full recovery, you have to be ready yourself. It took a death in the family and my best friend dying for me to change, my first week of recovery I spent on the DAFNE course and that honestly helped no end. It was the first time I had been around other diabetics and the fact that they had such good control made me both ashamed and determined to be better. I've never hated diabetes or wished I didn't have it, I just hated feeling fat!! But the way I feel about my looks is opinion and not a fact. I'm never going to be happy with how I look so I just try and enjoy all the other things In life, especially the things I couldn't do before being housebound.

Now me and my husband are trying for a baby and before I never thought that possible. My periods stopped for 6 years and ultimately I knew what I was doing meant I didn't plan for the future, I was relieved each morning to have survived the night!!

Just keep talking, there's various private groups on Facebook that Dwed can put you in touch with, all people going through the same thing so great advice on the side effects, things that get better and tips etc.

Ultimately you will make the decision when you are ready but you can do it and life will be so much better.
 
I know everyone's different but what was your first step ? Was it your diabetes regime or what foods you ate ect I know you mentioned a course DAFNE but I don't know what that is
 
Hi , the DAFNE course is dose adjustment for normal eating, it's a week long so quite intensive but it's all about counting carbs and getting your insulin ratios right. You spend a week with other type ones and discuss your blood sugars daily. I think that testing and injecting in front of others really helped me to confront things and face up to what I was doing and want to be better. There was no chance of hiding anything on that course! There is a waiting list for it but it's worth discussing with your diabetic nurse if you think you are ready? I had to practically beg my nurse to let me do it as she said I wasn't deserving of a place with my poor control! Needless to say I don't see her anymore, but equally I can't blame her, she didn't know the truth of what I was really doing.

So it was a combination really, I felt ready and was determined but I think without doing DAFNE I would've found an excuse to go back to my old ways.
 
Just been to see my nurse she referring me back to the consultant as my hba1c was 130 though I did spent 3 week laid up with a chest infection over Christmas which probebly hasn't helped but I did ask about the DAFNE coarse though she said there's a bit of a waiting list she said she would ask the doc about referring me as a urgent case she said she would prefer the consultant to decide insulin to go on as I suggested the basal bolas as that way I'm less likely to omit my insulin for fear of hypos I can just take what I require when I can eat ... I also discussed the fact of feeling that there was little support from my diabetes team and she has assured me that once the consultant has made the necessary changes to my regime if I didn't feel I was getting enough follow up support she would be more then happy to discuss anything with her which makes a change I have already been put on a scheme with my doctors surgery where if I ring to make an appointment even if they have none I have to be at least phoned the same day to discuss my problems ( I am on steroids due to the low blood pressure so something else that affects my immune system which is why I have to be seen quickly) so hopefully I will be seen soon and have some sort of action plan in place I know this journey not going to be easy but after hearing your story I live with a little more hope so thank you again
 
I'm really glad that you've made some really good steps towards getting the help and support that you need in order to change. At least now they are aware of how you feel and that you need more support than they are giving, then hopefully they will be more forthcoming with it.

Glad that they will put you forward for DAFNE, it may be different in your area but here they do get alot of cancellations so if they have you down as urgent hopefully you will hear from them sooner.

Remember nothing worth having or doing is ever straight forward or easy but anything is possible and i promise in the end you will feel so much better.

Keep in touch with your progress and if you hit any stumbling blocks im always around :)
 
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