09-07-2021 02:11 PM
09-07-2021 02:11 PM
Hi. Anyone on the forums also have NES?
Would like to make contact with someone with the same eating disorder as me.
11-07-2021 10:27 PM - edited 12-07-2021 01:03 AM
11-07-2021 10:27 PM - edited 12-07-2021 01:03 AM
I just wanted to reach out and welcome you to the forums - it’s great to have you here
Although I don’t have a lived experience of nocturnal eating syndrome, some years ago, I was diagnosed with an eating disorder not otherwise specified.
Although I've since been re-assessed and diagnosed with a few different mental health issues, I still wrestle with disordered eating behaviours and as such, I thought that I may be able to relate to some of your experiences and offer you some support
Also, just while I remember, one of the things that really helped me when I was new to the forums and still finding my way around, was that if you would like to chat with another forum member, or reply to one of their posts, place @ in front of their username just like I did at the start of my post to you i.e. @Fireflyseeker and that way, they will receive a message that you have contacted them
Take care,
ShiningStar
12-07-2021 10:11 AM
12-07-2021 10:11 AM
Hi @ShiningStar
Thank you for your message.
I too was diagnosed with an eating disorder not otherwise specified several years ago. I am awaiting a specialist psychiatrist appointment for my NES ATM. I have been waiting 6.5 months now. The appointment is 2 weeks away now.
I am really unhappy as I am putting on weight every week from NES. And it is just crazy because I have no control at night over my eating. I am doing something I don't want to do but am powerless to stop it.
Putting on weight for me is a bug deal as I have been morbidly obese in the past and I've had weight loss surgery. What makes my NES worse is that I sleep poorly so I can wake up more than 7 times a night and I eat every time. Consuming way more than half my energy intake for the day.
Why does your current therapist not thinK you don't have an EDNOS anymore? Did you receive treatment?
Thanks again for reaching out to me 🙂
12-07-2021 03:46 PM
12-07-2021 03:46 PM
Hi @Fireflyseeker sorry you struggle so much with eating disorders. I've not had a label put on me re diet but I too tend to have big snacks+ late at night, which interferes with sleep and wasteline. Also, emotional eating when upset. And some days every time I walk past kitchen I grab something to nibble, especially at night. I am also in the 'obese' category 😞 and thought we could help each other.
Drinking water seems to be the only callerie / kilojoule free thing we can put in our mouth... so I often try to drink water instead of eat, at least every second time. It's important to keep food out of sight, even hard to get to. Also, you have to make sure you're getting nutrients you need through the day, especially protien and vegies so you don't get as many cravings.. Having said that, my biggest failure is lack of exercise. Walking one hour a day, even in two 30min is all it takes but I struggle with this. Please @ tag me in when you reply to remind me to come back. 💕.
12-07-2021 04:22 PM
12-07-2021 04:22 PM
Hi @Former-Member
Thank you for your reply. I am sorry to hear about your struggles too. My weight loss surgery has helped me to keep to my calerie requirement during the day I control. And I lost a lot of weight. But I have no control when I wake up at night.
I too don't exercise but I work and I'm a 24/7 single mum. I also have chronic fatigue and go to bed at 7.30pm each night. But I still managed to lose weight without exercise. I used to exercise but don't anymore. The only reason this concerns me is I am missing the health benefits eg cardiovascular and strength benefits.
I use myfitnesspal and it says I have the required amount of protein. But I rarely eat veggies or fruit. So I know my diet sucks in that regard.
I could probably drink more water too.
12-07-2021 06:46 PM
12-07-2021 06:46 PM
15-07-2021 08:09 PM
15-07-2021 08:09 PM
My pleasure - It’s so lovely to hear from you
Thank you so much for sharing some of your experiences with us
As I read this part of your story, I could hear such a deep sense of despair and desperation and my heart goes out to you
Finding ourselves in a place where some of our behaviours are out of our control and our bodies change in ways that are in stark contrast to what feels comfortable for us can feel absolutely terrifying and I can’t even begin to imagine the pain and anguish that you may be feeling at this time
Although at times, finding our way through the darkness can feel impossible, I just ever so gently wanted to reassure you that with the necessary care and support, this is possible
Wow! Waiting close to seven months for an appointment to see a specialist Psychiatrist sounds absolutely excruciating and I’m so pleased that the date of your appointment is drawing closer.
In my experience, waiting to access the support that we so desperately need can feel intolerable and it’s been during these times, that I’ve found myself grabbing onto anything that I could find, in a desperate attempt to keep my head above water and survive
With this in mind, I just wanted to share a few resources with you, in the hope that they may be helpful
The first resource is an organisation called the Butterfly Foundation. Basically, they provide support, information, resources and referrals for people who are living with an eating disorder or a body image issue. They also provide support for family members and friends who are caring for and / or who are concerned about someone they love.
I’ve just included the link to their website in case you would like to explore this further:
In addition to providing a variety of resources, they also provide support via a helpline. Basically, the helpline is staffed by qualified counsellors who also have specialist training in eating disorders and body image issues.
Their telephone number is: 1800 33 46 73 and you can contact them 7 days a week from 8.00am until midnight AEST.
They also provide online chat as well
I’ve contacted the helpline on numerous occasions and in my experience, the counsellors have always been really compassionate and helpful.
In addition to the telephone helpline, they also provide a variety of online support groups for people who are living with an eating disorder or body image issue.
I’ve just included the link about support groups in case you would like to explore this further:
https://butterfly.org.au/get-support/online-support-groups/
The second resource that may be helpful for you is the SANE Help Centre Basically, the Help Centre is staffed by qualified mental health professionals who provide support to people who are living with complex mental health issues. In addition, they also provide support for people who are caring for a loved one who is living with complex mental health issues
I’ve contacted them on several occasions and I’ve always had a really positive experience where I felt supported and understood
If you would like to contact them, their telephone number is: 1800 18 7263.
They operate Monday to Friday from 10.00am until 10.00pm AEST.
In addition to telephone support, they also provide support via web chat and email.
Sometimes it can be difficult to get through on the telephone, but if this is something that you’re interested in you’re always welcome to schedule an appointment via their website - that way you can guarantee that you’ll be able to talk with someone on a day that best works for you
I’ve just included the link, in case this is something that you would like to explore further:
https://www.sane.org/counselling-support
That’s such a great question I was initially diagnosed with an eating disorder not otherwise specified many years ago by a Psychiatrist and as such, I participated in therapy for a little over a year before I made the decision to stop attending appointments.
After this, I began participating in therapy with various Therapists, until I finally found my current Therapist During my initial appointment, she completed a new assessment and through this process, she concluded that what’s happening for me aligns with the diagnostic criteria for a mental health issue known as body dysmorphic disorder and as such, this is one of the mental health issues that I’ve since been diagnosed with
I’m not too sure if you’ve had the opportunity to explore the forums and as such, I just wanted to share a fairly recent conversation between a few of our forum members in relation to their lived experience of eating disorders
I’ve just included the link to this particular conversation in case you would like to read other people’s experiences and participate in this conversation:
It can be really challenging to connect with people who share similar experiences to our own and as such I’ve just invited @Bow and @M_P90 to participate in our conversation, as they also live with eating disorders and they may be able to offer some support
Please remember that you’re always welcome to reach out here whenever you need to
Take care of yourself,
ShiningStar
15-07-2021 08:22 PM
15-07-2021 08:22 PM
Thanks for the tag @ShiningStar
Hi @Fireflyseeker i was diagnosed with OSFED atypical anorexia in March, been struggling with it since the end of last year and am also a 24/7 single Mum. I'm actually currently in hospital with a NG tube cause my ED had gotten so bad.
EDs are complex and it's really hard to find the appropriate supports. The butterfly foundation has been amazing. An incredible source of information and understanding when I had no idea what was going on for me. It's really nice to be able to talk with people that actually get it.
The sane help desk counsellor safe also fabulous! Not many mental health people get or understand EDs, they are such a specialised field, but they have taken the time to understand what I am going through and I find them so helpful.
do you see a dietitian? If you don't I would totally recommend getting one. My dietitian at times has been far more helpful than my psychologist. Obviously need to find one that has experience with EDs, but if you can find one they will be worth their weight in gold.
I hope you get the answers that you are seeking at your appointment that is coming up. I know that when I was finally heard and had a diagnosed it was such a relief. There were answers to what was happening for me.
All the best @Fireflyseeker
16-07-2021 01:04 PM
16-07-2021 01:04 PM
Thank you so much for your post. It must've taken you ages and I very much appreciate your time.
I have connected with the butterfly foundation once through an online chat.
I am currently in touch with Eating Disorders Queensland too. Trying to get in to someone there.
Thank you for your understanding and compassion. And sharing your story.
I often feel like I can't claim to have an eating disorder as I am not in the mainstream like anorexia or bulimia.
I am also trying to cope with a relationship breakup too. And this is hard because I see him everyday at work.
But I digress.
I will keep your other support options in mind.
Thanks again for replying x
16-07-2021 01:12 PM
16-07-2021 01:12 PM
@Bow thank you for your post.
I am sorry to hear you are so unwell and in hospital.
I don't see a dietitian. Being told what I should and shouldn't be eating is a real trigger for me. Plus ive never seen a dietitian that understands that. I guess I know I don't have a healthy diet but I don't need someone to tell me that I'm bad.
I probably won't be able to afford one once I start seeing my psychiatrist. I will be out of pocket over $200 on the first visit and then out of pocket $180 for each 30 min visit after that. I am going to have to take money out of my home loan to pay for it. I don't know how they can charge so much.
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