Need help/Someone to talk to - struggling to cope.

[sophie7]

Before I write this I just want to ask everyone to please not judge me. I know that a lot of the stuff I've done/am doing is not good for my health - I get all that. But I really need some advice/support for what to do, as I've dug myself into a really big hole and am really worried. I wasn't sure where to post it, but I feel that people with Type 1 might best be able to understand what may have driven me to do this; the feelings of control, helplessness etc...

This is my orginal greeting post - gives an overview of what's happened in the last six months or so

Thsi is just a brief background to my diabetes:I've been struggling with my diabetes for a while now. When I was diagnosed with type 1 at the age of 7 (I'm 17 now) I didn't really think about the reality of the disease - it was all about just dealing with it. I've had a rocky road to say the least. Went from mixtard to lantus to levimer (which was awful) and eventually onto the pump at the age of 11 after I became really ill with the levimer.

About 2 years ago, I started to feel really dejected about my diabetes. It dawned on me that it wasn't going away, and I felt so helpless - my BG at that point was quite good, and my consultants had always said how well I coped etc... I have always controlled it quite well - testing a lot, doing my own injections etc..., and my life was also going well bar the diabetes. I have always been a perfectionist and have achieved quite well at school - my grades have been good. Yet it has never felt good enough. And my parents aren't pushy... well, they never seem to truly appreciate how difficult this is for me. Sometimes I feel like it's all about the illness and never about me.

Anyway, background over! The real reason i'm posting is that in the last six months I've developed an eating disorder. No one knows - well, they guess, but I've never admited to it and can't. It is quite strongly rooted in my diabetes. I hate having high blood sugars - hate it. I've never really seen lows as a terrible thing (unlike the conuslant). They make me feel dizzy etc... but the highs are the worst feeling - I feel so out of control. I was also conscious at school I suppose of how skinny everyone is, and from about the age of 15 I was trying to eat very 'healthily' - subconsiously to lose weight. Around my GSEs in June, I started restricting more, again a control thing for my BG levels, and also because my diabetes makes me feel so out of control. It was after my results though, that everything spiralled out of control.
All I wanted was to 'amaze' people - sounds really stupid I know. But I wanted to prove that my diabetes won't stand in the way of everything. Anyway, I surpassed my own expectations and got 9 A*s and 2 As. Yet my mum still found the time to say that same day "when I first heard your results, I thought they were just amazing, but then you hear how everyone else did and you think 'oh, ok' ". Word for word that is what she said and it has haunted me ever since - in the back of my mind it plays over and over again, as for me it epitomised my own insecurities- I would never be good enough. I started severely restricting my food, and by septemver had lost 2 kg since my July appointment.
It only continued to get worse, and in October I started purging - since late November I have purged virtually everyday, and writing that here makes me disgusted with myself. December Doctor's appointment, I was down to 52.5kg from 56 in July, and it was probably one of the worst appointments I had - gone was the 'perfect' patient.... and since then all my parents could say was - 'Sophie you need to eat or the doctors will get mad' 'Sophie you don't want this on your medical records' - this has made me resent them because in saying that, it makes it sound as if they don't even care about helping me .
March appointment - I was down to 50kg and BMI of just under 20. My daily total insulin on my pump was down to 23, with only 3 units of bolos. However, I lied about this on my data sheet and said it was 28, thinking there was no way they would find that out. And yes I know how stupid it is to lie about data, but it was the only way I felt I could hide the reality of my problem. At the end of the appointment, my consultant asked for my pump so she could download the data - I had no idea you could download pump data, and it obviously showed I'd been lying.

So a week later, receive an email from my specialist nurse saying that she wants to see me for an appointment on 18th April, as she has "grave concerns" over the minimal carbs I am eating, and the hypos. The horrible thing is, the March appointment was meant to be my transition from children's to adult's clinic. This consultant who emailed was my nurse when I was really young, and I'm supposed to be going back to her now - I feel like i've let her down so much. I feel I've let everyone down. That's why I can't tell anyone. But I just know it's going to come out next week. Mum and Dad (mainly) suspect the purging so have forbidden me going to the toilet after meals. I literalyl cannot stop it though - I've tried, believe me. Everytime I promise myself 'this will be the last time' - but it never is. Now I've started 'fake bolusing' - I eat no carbs at lunch, but did a 2 unit bolus and disconnected my pump whilst it goes through. I know what I'm doing to myself - I'm not naive as to what this could lead to. But I can't stop - it's the only way to feel in control; sometimes I feel it's all I have. And I can't tell them - they would never forgive me and it would tear them apart. I feel it's more selfish to tell them then to just keep it to myself and hope in time it will get better. And i also know at the appointment that they'll drastically cut my basal rate, which willl give me loads of highs. They say that I have a huge problem with hypos, but it just seems that all I have are highs, and I hate them.

I just want this to go away - I want to be normal and happy. I know some people will probably have an opinion of me as some crazy, twisted person right now - a selfish teenager - believe me, ihat's how I see myself too. But I really need some advice - I feel so isolated, and I'm terrified about this appointment next week. I don't know what to do.

Sorry for the essay - I wanted to try and get everything down to avoid any misconceptions.

Sophie

 

[Paul1976]

I'm not experienced enough to answer this sadly but I'm 'Bumping' this up in the hope that someone who has been through what you are going through will answer soon!

 

[Elc1112]

Sophie,

I really can sympathise. I had an eating disorder between the ages of 14 and 17. I always found it hard to lose weight while I was on insulin - still do. If my sugar levels were running high over a long period of time I would lose weight. I felt rubbish, but inwas losing weight and felt in control. It was a really vicious circle and it was hard to break the habit. I'm now 28 ad I still struggle with my weight at times. I control what I eat and find it far too easy to slip back into bad habits.

I knew that I was damaging my health, just like I'm sure you do. Having an eating disorder is something that anybody would wish on themselves and you can't just 'snap out of it'.

I eventually went to see my GP, who was really supportive. They referred me to a specialist consultant. The first consultant offered some great support an advice but I found it hard to talk to her. I then decided to go private. The consultant was great and really helped me face some of my problems and move on.

It's something that stays with a lot of people throughout their life. You can, however, find better ways to cope.

For me, the hardest step was actually admitting I had a problem and talking to somebody about it. A lot of people just couldn't understand why I wouldn't just eat and I found that so infuriating. Having said that, it was so helpful to have the support of friends and family as I started to recover.

My "I can't go on like this" moment came when I was taken onto hospital with DKA. One of the consultants was really blunt with me. Not only did he tell me about all the diabetic complications that I was putting myself at risk of, he also told me that I was beginning to show signs of heart failure and osteoporosis. On top of that, he told me I was unlikely to be able to have kids unless I got my act together.

I hope that you manage to find a way out of this cycle. Please feel free to PM me if you want to talk.

Big hugs
Emma xx

 

[SophiaW]

Sophie I don't feel I can respond as well as some other members here will be able to because I know and understand diabetes from a parent's point of view and not from your point of view. I can try to put myself in your shoes but never having had diabetes myself I can only imagine what you're feeling. Your parents will be the same and if you can talk openly and honestly with your parents, at length, perhaps they will be able to better understand how they can be more supportive. Maybe writing it all down in a letter would be easier for you to communicate your feelings, and it gives them time to read what you want to say without them becoming defensive or trying to interrupt, they will have time to think over what you have said and try to make sense of it all. I think taking this step to write out excatly what is happening and how you feel on the forum is a very positive thing for you to have done and perhaps the first step to making things better for yourself. If you choose to keep this away from your parents then please speak openly and honestly with your care team. Don't try to do this all by yourself, you don't need to do this alone. The medical staff on your care team won't judge you or be disappointed, they will want to support you and help you get through this.

 

[Elc1112]

I promise that thigs will get better. It will take a lot of work but it's worth it, it really is xx

 

[shop]

Hi There,

My 1st impression of you is NOT crazy Twisted or selfish. The first thing that strikes me is your BRAVERYfor first admitting to yourself that you have a problem and secondly to ask for help albeit on this forum. IT IS A STEP IN THE RIGHT DIRECTION. :thumbup: The little I know about eating disorders is about control so the fact that you say you are a perfectionist and that nothing is ever good enough leads me to believe that what you say is correct. I urge you to speak to an Adult either a parent, family friend, doctor anyone who you can trust and who can help you to do whatever it is that you need to do next to get help.

Also as Paul says I am hopeing that somone who has gone through the same thing can help.

 

[phoenix]

Sophie,
You aren't alone. There are a lot of young people with diabetes who feel the same way and have reacted it the same way as you .
It has take a lot of courage to write that post and that's a big step towards helping yourself.
There is a group of young women who have gone through this and come out the other side. They have started a charity called DWED. (diabetics with eating disorders).There are people there that can give you support and help. They also have a facebook page which can act as immediate and day to day support.
If would suggest that you copy out your post and email it to them. They aim to reply within 24 hours but if you are really feeling bad right now there is a mobile phone number you can contact,
http://www.dwed.org.uk/

edit: I've just read the answers to the first post, Carbsrok gave the same link. Please, if you haven't already done so get that extra bit of courage to contact them.

 

[smidge]

Hi Sophie!

Firstly, you come across as an intelligent and thoughtful girl. Secondly, you know you have a problem and you have made a great first step in dealing with it. Thirdly, your parents love you more than you know and are very proud of you - it might not seem it to you, but I promise you it is the case. Fourthly, you haven't let anyone down - you are suffering from a psychological illness for which you need medical help.

The way you have explained your situation in your post is so clear, I urge you to print it out share it with your parents if you can and certainly take it with you to your appointment next week and share it with your nurse. She has known you since you were a child and she will understand and get you help you need. Don't be frightened of next week's appointment - see it as a positive opportunity to share this problem and ask for help.

Please take care.

Smidge

 

[elainechi]

oh dear i wish i could help you as you need help. tell your dsn as soon as poss. yoy will not be judged and i feel this will not be the first time they.ve heard of this. my dear daughter is well aware of diabulimia etc at 12. bigs hugs to you. xxxxxxx

 

[dawnmc]

I think you are so brave for posting. Is there a possibility you would let your mum read what you have written. As a mum I can only put myself in your mums position in that I would be really upset to know my kids were struggling, cos you want to take away what they are going through.
The only thing I can add is take one day at a time - baby steps. But you are already heading in the right direction. Google Gok Wan he has a site available to help teenagers basically its about learning to love yourself the way you are and appreciate all our differences.
Take care.

 

[Glados]

I think you should show an adult you trust this post, or something like it. Somebody has to know how ill you are becoming, so that they can support you.

You're a really impressive person - you have great personal insight and you write well... But sometimes we just need help, and you DO need help. You want to be normal and happy but the way you're living now leads AWAY from that. I really feel for you but you have to reach out and let the people around you help you.

As for your Mum's remark...
All my life my dad made fun of my weight. When I was about 34 I lost 4 stone and got really fit by swimming and weight training. Everybody told me how great I looked, except for my dad. Eventually I called him on it and (without looking at me) he said,
"You've got to remember I go to the gym and see all those pretty little dolly birds doing aerobics class... I mean, you're never going to look like THAT, are you?". :shock: It took me a long time (and a lot of yo-yo dieting) before I got over his thoughtless remark. BUT, I think he DID love me, he was just being ignorant. Parents aren't perfect, sadly. You can be "good enough" at times when, frankly, they aren't.

Get help and be proud... You are VERY bright and sound lovely.

 

[hanadr]

Sophie
Idon't have any experiences like you, but I am a grandmother, so know how your parents must be feeling. I suggest you get in touch with Diabetes Uk [the charity not this forum] and ask for help. they have loads of services for young people, including group holidays. You'd be put in contact with the right people so you wouldn't feel so alone.
Hana

 

[jones_48]

Hi Sophie,

I really can relate to your post - i'm 20 and have just passed the 10 year mark too! Although its not the same, i have to admit to frequently skipping injections because of weight issues. In my experience it just seems impossible to be able to talk to my diabetes team about it as i think they just expect me to be doing well because i'm a 'smart girl' but sometimes you just can't help these things. Now i'm with the adult diabetes team i feel i can talk a lot more openly with them about my control (maybe because you're no longer seen as a child), as i used to lie a lot more about my blood sugar readings. Maybe it will be the same for you? I can't talk to my parents about it as they they think i can cope with it all and they just don't understand how hard it can be sometimes.

I honestly think that now you've taken the first step in sharing your problem with the members on this forum, you should talk to a friend or DSN, or like others have said, print this off and give it to your parents or nurse to read so they can see the full extent of your problem / worries! Maybe you could email it to your DSN before your next appointment so that when you go she will be able to give you some direct advice and offer you support!

You really shouldn't worry too much about the odd high reading i had an appointment this week and brought along my data, and after looking at it my DSN said that when i look at it i probably focus on the highs without realising that there are a lot more lows, which are probably more worrying :S

Please try and be honest as you can at your appointment to get the help available - you won't be the only one in this situation

Also, well done with the GCSEs - they're amazing!!

 

[sophie7]

Thank-you everyone for replying so quickly - really means a lot as posting this was very hard.

I took your advice and emailed the DWED website - hopefully I will get a reply from them soon. And part of me does feel I should show this to my DSN. The trouble is that my parents are going to be there as my appointment Wednesday. I really cannot tell them. They live in this kind of fantasy world where they think everything in our family is perfect - the irony is almost painful to listen to when they talk about some of the girls at my school who are "wasting their lives away" going out and drinking all the time. (The greater irony is that I am so critical about that, and so 'puritanical' about drinking, smoking etc... when in reality I'm doing far worse damage to myself). My mum was on the phone to my Godmother today, and was playing down everything. I've lost almost a stone in about 8 months and she says i've lost a 'little bit' of weight. And then she said how, since the last appointment in march, i've been trying 'so hard' and am eating 'so much more'. The reality is that the purging has only got worse as a result in the last month, which is probably doing far more damage than anything else. It's just an endless circle of lies and delusions - i'm not getting better, that's just what they want to believe and what they want to portray to the outside world. I really can't take it anymore - I feel so, so tired of it all.
I really am resenting everyone so much right now. My BG levels have been high all weekend - yeseterday i flipped out because she made this barbie-que sauce and didn't tell me she'd put sugar in it, so my BG went to 17. And even though I wouldn't have eaten pudding, I felt so mad because again it is like they're controlling me and I feel so helpless. The doctors are driving me crazy, because they want me to eat more and cut my basal rate - how are more high blood sugars going to do that?

I just need a break. School is non-stop and I have my AS Level exams in 5 weeks. I'm trying to get the grades to apply for Cambridge to do English, and it has been my dream to do that for so long. What chance do I actually stand? I have just completely messed my life up and I don't know what to do anymore. But I just cannot tell them - they would never treat me the same again, never trust me again. Dad has said unless my diabetes gets under control (with the hypos and carbs) I can't even consider going to uni - what would happen if they found out about the purging. I feel like I am in a catch-22 situation here, and there's just no way out.

 

[jopar]

Shophie..

You've done a very hard thing, that's telling a bunch of strangers that things aren't good you have a problem and need help with it... This alone takes a lot of courage.

I hear what you say about your parents believe that everything is so perfect etc, so shattering their world with your problem seems like a very frightening thing to do... But by coming out into the open at your appointment might be the best time to do a bit of world shattering...

As you will be in the position of having your DSN there with you to give you support, but she/he will also be their to soften the blow for your parents, as the the process of 'where to we go from here' will start immediately and by the time you'll out of your appointment your parent minds will be taken up with the 'where we going' and not so much on 'our perfect world just been shattered' then 'what do we do now'...

As the alternative of pretending everything is honky dory and you'll fine etc... At some point your problems will be so overwhelming you will become seriously ill and everything will hit all at once... Not only a very brutal way of shattering worlds, but your are likely to shatter your hope for the future... So devastation for all..

And you never know your parents may already know something isn't right, but don't know what or know how to ask you... Us parents can be fickle things and can at times react in a total different manner than expected!

I've got 3 children, all given me grief at times, my youngest is 21 later this year... I'm a mum with an old fashioned streak I have never permitted my children to sleep with a BF/GF under my roof (can't stop them going to the BF/GF parents) so you can imagine when my youngest daughter the only one still at home... Realised she was pregnant, she really didn't know how I would react at all...

Perhaps see if you can phone your DSN before your appointment, tell her how you feel etc, and that you want help with telling your parents...

 

[jones_48]

I imagine it would be a lot harder to talk to your DSN about it with your parents there. Could you tell them you want to speak to the DSN by yourself first about a 'personal matter' or something? i'm sure they wouldn't mind! Then if you manage to tell her about it, when you speak to your parents she can be there to support you all.

 

[ButtterflyLady]

I would suggest considering telling an adult or health professional privately first, ie not with your parents there. It sounds like your parents may have some issues of their own, or at the very least be at risk of putting their foot in their mouth and saying something insensitive, which you don't need on top of what you're already experiencing.

I hope that you are able to get help from professionals who specialise in eating disorders, and if they think it would be helpful for you, then your parents could get some counselling in order to getter understand your reality and support you, instead of just pressuring you. I wish you all the best - keep asking for help, you are doing the right thing.

 

[Elc1112]

,Hun,

I am so proud of you for taking this all important first step and admitting that something is wrong. It's incredibly hard to do and it took me a long time to do when I was in your shoes. 

As for university, you sound like an incredibly bright girl and there is absolutely no reason why you can't get the grades to get into Cambridge. They don't need to know a thing about your medical history so don't let that stress you out. 

I found it so hard to talk to my parents about my eating disorder. I felt like they were in denial aout my problem too. My mum would downplay everything and I hated it when she would cook as I was so Paranoid about her adding in extra ingredients. I also felt unable to talk to my DSN at first for fear of being judged and I really didn't want the lecture about all the potentialdiabetic complications. I went to such lengths to hide my disorder from the world and I really did get myself in such an unhealthy situation. 

Once I'd spoken to my GP and got some help I found it much easier to talk to others. My parents, although they really didn't understand eating disorders, were very understanding. I felt like I was letting them down and my mum was in tears when I told her. Truth is, I wasn't letting them down. They were worried aout mr and so proud of me for facing this head on. 

It doesn't matter who you talk to first, it's the getting it off your chest that is that first step whether it's your mum, your DSN, GP, school nurse. Each of them will be able to help and nobody will judge you. 

I had to end up deferring some of my AS levels as I was too ill to sit them. I managed to sit them a few months later and still managed to get the grades I needed to get into Durham. 

There are ways out of this and you are on the right path. As others have said, you are incredibly brave for sharing this information here and I wish I'd had half your courage when I was your age. 

Find somebody that you can talk to face to face and explain everything like you have done here. You can then start taking steps towards your recovery. I know how awful everything seems now but it really does get easier and you can break the cycle. 

We are all here to support you. Your parents will support  as will your diabetes team, your friends and so on. 

Em xx

 

[daffodil66]

Hi have just been reading your post, don't struggle on your own, you've done so well to try and cope and have also shared your problem with us all. Don't be frightened to get help.

 

[LittleGreyCat]

Sophie,

this is not my area of expertise but I do think I am picking up one big thing.

You are having major problems communication your true feelings and situation to your parents because you are afraid of hurting them and disappointing them.

You feel that your parents do not really understand the problems you have, and that what they say and do can sometimes be hurtful and demotivating. They are unintentionally not always giving you the understanding and support you need.

In situations like this, one solution is family counselling.
You can talk to a trained professional, your parents can also talk to the counsellor, and then this person can mediate and explain without all the emotional constraints that have been built up over the years of family life.

I picked the following off an NHS website:

The aims of counselling

Counselling and talking therapies can help people:

discuss their problems honestly and openly
deal with issues that are preventing them from achieving their goals and ambitions
have a more positive outlook on life

Counselling can be a positive way of addressing any unresolved issues you have and can help you understand your problems better. It can also give you a better understanding of other people's points of view.

This should be available through your doctor - and just asking for it is a very positive step forward.

You need to be able to talk honestly and openly with your family and your health team - so that they can help you with your managment of your diabetes.

You already know that you should not be concealing things from them.
One more small step and you will be on the way to resolving your problems.

Best of luck.

LGC