Diabulimia Support

[kleigh88]

I have suffered with diabulimia for a number of years and with COVID being a further risk to my health, I have tried to find some strength to try and combat recovery with some support from a psychologist. I don't want to die, I just want to be thin which is why I started delaying my insulin intake all those years ago until just a few weeks ago. Don't get me wrong, it really hasn't been easy so far and I have gained 1stone 10lbs in that short space of time, however, the psychologist said to me today that it will be water retention due to my body being dehydrated for such a long time and assured me to keep going as I am as the added weight is just water not fat and it will get better. I have often sat in the evenings and thought about how alcoholics have support groups and wondered if there was much interest on here for people who are currently suffering from diabulimia, recovering from diabulimia or someone you know or care about who may be suffering/recovering. With the COVID situation ongoing in our lives at the moment, my understanding from reading news articles is that people are struggling alot more mentally than they were before and I include myself in that. When this virus took off, my self care was depleting very quickly, I was already anxious and my eating disorder just got worse and worse and worse. It makes me sad to think of anyone suffering and I have found it helpful to finally open up to my family about what I have been hiding for the last few years but I do still feel that they don't really 'get me' understand my diabetes or understand the mental issues that plague me every single day. I presume there are others reading this who might feel in a similar way or be in my situation too and I often feel it would be of comfort to talk to people in a group that understand exactly what you are going through or for families of those people who might want to understand their struggling family member. What do people think with regards to setting up a teams meeting or a zoom meeting and try to support each other on this arduous journey?
All that would be needed is a device that you can use to speak, mobile phone, iPad, computer...whatever it may be and if you are like me where you don't like being seen then just switch the camera off and you can still chat, if you enjoy chatting on camera then you can put it on, whatever suits each person really. Can anyone give me some feedback on their thoughts?

P.S...Sorry if I rambled a bit, I didn't really know how to touch the subject and felt nervous!

 

[Antje77]

Hi @kleigh88 , I think it's wonderful you're starting to tackle this!
I don't have diabulimia, but I have a young friend with an eating disorder and it's very hard.

I don't know if you're on Facebook, but I did a quick search for diabulimia and it looks like there's several groups on the subject. Not what you are looking for, but it might be helpful anyway.

Wish you all the best!

 

[Jaylee]

Hi @kleigh88 ,

Though I feel it is a great idea for a support group regarding diabulimia.

If feel it would be wise to be mindful regarding personal information online regarding contact details for such a venture.

A closed monitored & moderated group maybe the way forward with regards to making contact with appropriate people in the same position & also safeguard anyone from potential untoward elements to your online safeguard?

 

[kleigh88]

Hi @kleigh88 , I think it's wonderful you're starting to tackle this!
I don't have diabulimia, but I have a young friend with an eating disorder and it's very hard.

I don't know if you're on Facebook, but I did a quick search for diabulimia and it looks like there's several groups on the subject. Not what you are looking for, but it might be helpful anyway.

Wish you all the best!

Thankyou very much for having a check on Facebook, I've not been on Facebook for 14 years myself and it's not something I would want to sign up to again but I do appreciate you taking the time to research it further. I am sorry that you are seeing your friend suffering, just know that they are probably suffering even more inside. Just be there for them and listen to what they are really saying to you. I hope your friend makes a full recovery. All the best xx

 

[kleigh88]

Hi @kleigh88 ,

Though I feel it is a great idea for a support group regarding diabulimia.

If feel it would be wise to be mindful regarding personal information online regarding contact details for such a venture.

A closed monitored & moderated group maybe the way forward with regards to making contact with appropriate people in the same position & also safeguard anyone from potential untoward elements to your online safeguard?

Hello
I really am thankful for your response. It was very naive of me not to think deeply enough about those sort of issues. I just saw the positives that people could get from this kind of support rather than the risks that could potentially come with it. I am wondering if when COVID is under control that I could suggest some sort of group set up at my local hospital or a venue I could potentially use to sit for a short while with others in this situation. I could possibly try some fundraising event and pay for the venue that way. I think now I have got in my head that I want to do this I would really like to pull it off and I don't want people to have to pay for the benefit, it's another worry that some people have on top of everything else that is going on. I really do appreciate the feedback xx

 

[Jaylee]

Hello
I really am thankful for your response. It was very naive of me not to think deeply enough about those sort of issues. I just saw the positives that people could get from this kind of support rather than the risks that could potentially come with it. I am wondering if when COVID is under control that I could suggest some sort of group set up at my local hospital or a venue I could potentially use to sit for a short while with others in this situation. I could possibly try some fundraising event and pay for the venue that way. I think now I have got in my head that I want to do this I would really like to pull it off and I don't want people to have to pay for the benefit, it's another worry that some people have on top of everything else that is going on. I really do appreciate the feedback xx

Hi,

Far be it from me to discourage you. Diabulimia has been an issue for some longer than you may think. I was diagnosed in the mid 1970s I've seen young T1s on wards with what it is now identified but no one knew much about it.

Long complicated story, even I went through it for a short while. My family (older sister.) thought I was taking illicit drugs.?
I feel it is an individual issue, not one size fits all?

Let me tag in @mooshk . Her input maybe more appropriate.

 

[kleigh88]

Hi,

Far be it from me to discourage you. Diabulimia has been an issue for some longer than you may think. I was diagnosed in the mid 1970s I've seen young T1s on wards with what it is now identified but no one knew much about it.

Long complicated story, even I went through it for a short while. My family (older sister.) thought I was taking illicit drugs.?
I feel it is an individual issue, not one size fits all?

Let me tag in @mooshk . Her input maybe more appropriate.

Not to worry, honestly I don't feel discouraged at all. If anything it has just made me think of other ways of helping others at the same time as helping myself. It's just something that I feel should already be in place in hospitals or communities. Worst case scenario is that nothing comes of it but I will try my best. I am sorry to hear that you also suffered at the hands of this terrible eating disorder, I hope you have now found some peace from it xx

 

[Jaylee]

Not to worry, honestly I don't feel discouraged at all. If anything it has just made me think of other ways of helping others at the same time as helping myself. It's just something that I feel should already be in place in hospitals or communities. Worst case scenario is that nothing comes of it but I will try my best. I am sorry to hear that you also suffered at the hands of this terrible eating disorder, I hope you have now found some peace from it xx

That is my mum's saying.. "As long as you try your best."
I am now at peace, it took me a while to identify the personal complexity of it. Then cut my ties with the "trigger."

I empathise that others need to chose a different positive path..

 

[kleigh88]

That is my mum's saying.. "As long as you try your best."
I am now at peace, it took me a while to identify the personal complexity of it. Then cut my ties with the "trigger."

I empathise that others need to chose a different positive path..

That's all I ever tell my boys too. If the best isn't good enough, so be it. I always say you haven't failed if you've not stopped trying too. I'm good at giving advice, just not listening to my own well I think you have done really well to go through that and come out the other side. It sounds like it wasn't an easy journey for you and I empathise with you for that. You should be proud of yourself, you are an inspiration xx

 

[Jaylee]

That's all I ever tell my boys too. If the best isn't good enough, so be it. I always say you haven't failed if you've not stopped trying too. I'm good at giving advice, just not listening to my own well I think you have done really well to go through that and come out the other side. It sounds like it wasn't an easy journey for you and I empathise with you for that. You should be proud of yourself, you are an inspiration xx

Hi, I think it was my culmination of sorting out my own personal circunstanses & realising what really matters..
It's certainly not a formula for all I can take "on the road."

I've no doubt yer lads will do you proud.

 

[kleigh88]

Hi, I think it was my culmination of sorting out my own personal circunstanses & realising what really matters..
It's certainly not a formula for all I can take "on the road."

I've no doubt yer lads will do you proud.

Well here is hoping I really love my boys and want to do my best for them. That's all I really want out of life that actually really does matter. I am glad that I have turned to the forum once again to speak out, the support is brilliant. For a long time I didn't use the forum because I suffer with depression and I just sort of cut myself off from everything. My medication is definitely helping with the way I am feeling. I have the odd bad day but it was every day before so it's good progress. I think being present on the forum more might just help me more than I thought it would xx

 

[zand]

There is a sub forum related to diabulimia here, there maybe something in there to help you.

Eating disorders and diabetes | Diabetes Forum • The Global Diabetes Community

 

[Jaylee]

Well here is hoping I really love my boys and want to do my best for them. That's all I really want out of life that actually really does matter. I am glad that I have turned to the forum once again to speak out, the support is brilliant. For a long time I didn't use the forum because I suffer with depression and I just sort of cut myself off from everything. My medication is definitely helping with the way I am feeling. I have the odd bad day but it was every day before so it's good progress. I think being present on the forum more might just help me more than I thought it would xx

My take on it is in life, there needs to be a little "light & shade?" If the sunshine red lines all the time, where can you go from there?
The odd bit of dodgy stress from (say.) a burst pipe or the car breaking down & resolving these issues. Can be just as exhilarating.
It's long term consistent causes of stress & anxiety with no resolution, that are truly unhealthy.

The climb to the moutain top can be arduous, but the view from the top...

 

[MrsA2]

@kleigh88
I don't have diabulimia, and don't know anything about it, but I am impressed with how far you have come and at your intentions to help others. The world would be a better place with more like you in it.
There's no reason at all why support groups outside of this forum shouldn't be set up, but please do stay on here too. Its amazing how varied each new post and poster is. Theŕe will be people who would benefit from mutual support and understanding

 

[mooshk]

Hi,

Far be it from me to discourage you. Diabulimia has been an issue for some longer than you may think. I was diagnosed in the mid 1970s I've seen young T1s on wards with what it is now identified but no one knew much about it.

Long complicated story, even I went through it for a short while. My family (older sister.) thought I was taking illicit drugs.?
I feel it is an individual issue, not one size fits all?

Let me tag in @mooshk . Her input maybe more appropriate.

Hey both, so good to see this chat is happening and thank you for the tag!

I would be really up for a zoom call thingy (definitely the technical term) to help support/connect with others with diabulimia and attempting recovery or just struggling.

Happy for it to be just us if there's not much of a response from others but I'd reccomend posting it in the other group too for uptake .

Also, massive congratulations on how far you've come in your recovery! I am trying and honestly seeing the progress is so impressive-makes me feel proud even though I don't actually know ya xx

 

[kleigh88]

So sorry for the late reply, I did ask for notifications through email so I could continue to watch the thread and see peoples opinions on this. For some reason I stopped being notified so I didn't see the last few messages until now. Thankyou so much for the lovely comments, they made me feel emotional, in a good way. Not had the best time over the last few days with feeling low but I spoke to my consultant today and they reassured me that they will provide me with further support. I really don't know if this will make any difference but I also sent an email about this for the attention of Boris Johnson a few days ago, I got an email back today to say my email would be sent on to the relevant government department but basically it was to ask if at this time when eating disorders and other mental health issues are on the rise, would it be possible for some funding for the NHS to be able to provide a support service in this way for diabulimia and just to raise more awareness of type 1 diabetes in general. I am not sure where else I can post this @mooshk to spread the word?

 

[mooshk]

So sorry for the late reply, I did ask for notifications through email so I could continue to watch the thread and see peoples opinions on this. For some reason I stopped being notified so I didn't see the last few messages until now. Thankyou so much for the lovely comments, they made me feel emotional, in a good way. Not had the best time over the last few days with feeling low but I spoke to my consultant today and they reassured me that they will provide me with further support. I really don't know if this will make any difference but I also sent an email about this for the attention of Boris Johnson a few days ago, I got an email back today to say my email would be sent on to the relevant government department but basically it was to ask if at this time when eating disorders and other mental health issues are on the rise, would it be possible for some funding for the NHS to be able to provide a support service in this way for diabulimia and just to raise more awareness of type 1 diabetes in general. I am not sure where else I can post this @mooshk to spread the word?

Heya no probs my notifications don't come up either it's weird ha.

There's a charity called DWED that offer support but it's only one women that is able to do it so I think it may be easier to get resources there but may be not official support.

Urmm could perhaps post on the Diabulimia thread on here?


Unfortunately the Tories aren't interested in offering funding or support for diabulimia, there has been a couple of campaigns for it before that they've ignored. There has been some work in Scotland as an MP's son passed away due to it.

For a year I was at the Kings College Diabulimia unit but this actually worsened my condition as the professor is unfortunately quite aggressive and I didn't find the support I needed. However, this may work for you? It may be worth asking your consultant to see if they could refer you?

Hope this helps

 

[kleigh88]

Hey @mooshk ! I hope you are doing ok? Sorry I've not been in touch, I've had a rough time within myself. I am still taking my insulin at the right times which is the longest I have gone through my periods of 'strength' that I get to beat this demon so I am really proud of that but I am struggling with the weight gain as I am also a binge eater have got some information from my psychologist and dietitian to help me. They told me about a website called BEAT and you can go on the relevant chatrooms on the site and share experiences with others. I am going to join tomorrow night with the binge eating group and see how it goes. Obviously for myself it's a more complex case due to the diabulimia too but it's a start I suppose. How have you been? I will let you know how the support group goes and if I feel it would be of any benefit to me going forwards xx