Lived Experience Forum

[Fireflyseeker]

@ShiningStar you are so lovely and caring!

My sleep study didn't show any reason for me waking up multiple times a night unfortunately.   But I have started a magnesium sleep supplement which seems to reduce the number of times I wake up.  And therefore eat. 

I'm on a 2 to 3 month wait list to see a therapist at Eating Disorders Queensland now.   I will get 30 free sessions. 

I am still waiting to see the eating disorder psychiatrist for the 2nd time. 

I am going to be off again in a week and a half with my married boyfriend.   Really dreading  that.  It's not my choice but at the same time I know I can't keep going the way I am.   I'm dammed if I do and dammed if I don't. 

Enough about me.

How are you? 

[ShiningStar]

Hi @Fireflyseeker 

It’s so lovely to hear from you 

Thank you so much for your beautiful compliment and for sharing this part of your story with me 

I just ever so gently wanted to reassure you that I will definitely reply to your earlier message - I just wanted to quickly reach back to you before Tuesday to let you know about one of our special events called Topic Tuesday 

Basically, Topic Tuesday is a live online discussion that occurs every fortnight right here on the forums!

For the most part, the topics that we discuss reflect some of the issues that are important and / or of interest to us and every fortnight we discuss a new topic 

All of the topics are facilitated by a guest speaker who has expertise in the topics that are being discussed. For example in August of this year, our Topic Tuesday focused on grief and loss. As such, the conversations were guided by a guest speaker from an organisation called Grief Line.

During this time, our Community Manager and our guest speaker, created a really safe and respectful space whereby they gently invited us to share some of our experiences in relation to grief and loss.

This week, our Topic Tuesday will focus on body image and eating disorders and as such, I just ever so gently wondered if this may be something that’s of interest to you 

I’ve included the link to this particular event below, just in case you would like to read a little bit more about it:

https://saneforums.org/t5/Special-Events/Topic-Tuesday-Body-Image-and-Eating-Disorders-Tues-28th/m-p...

It’s always so lovely to hear from you and I’ll be in touch as soon as possible 

In the meantime, please know that I’m thinking about you and sending you some very gentle and caring hugs 

Take care of yourself,

ShiningStar 

[ShiningStar]

Hi @Fireflyseeker 

It’s so lovely to hear from you 

Thank you so much for your patience in relation to the amount of time that it has taken for me to be able to reach back to you 

That’s so kind of you to ask about me - thank you so much 

Lately, I’ve been struggling with migraine headaches that just seem to come out of nowhere. Just when the symptoms begin to ease and I think that I’ve turned the corner, they return! Apart from resting and taking the medication that’s been prescribed by my GP, there’s not too much else that I can do which I find really upsetting as they impact so many areas of my life.

I’m so sorry to hear that the sleep study that you participated in didn’t shed any light on what’s happening for you. In my experience, it can be incredibly distressing and frustrating when medical investigations fail to provide the answers that we’re so desperately hoping for 

Oh wow! The magnesium sleep supplement that you’re taking sounds really promising and I’m so pleased that you’ve noticed a reduction in the number of times that you’ve been waking up during the night 

That’s great! I’m so pleased that you’ll be able to access some additional support through Eating Disorders Queensland  Wow! Waiting several months for an appointment is an incredibly long time to wait and as such, I just ever so gently wondered if you have any other supports available to you in the interim?

Thank you so much for sharing a little bit more about your relationship with me  As I read this part of your story, I began to develop an even deeper appreciation of just how complicated your relationship is and it sounds like an impossible situation to be in 

My heart went out to you when you shared ‘I’m going to be off again in a week and a half …….. really dreading that’ and I just ever so gently wondered if you meant that you’re taking some time away with your boyfriend?

Also, I just wanted to share with you that I’ve decided to take some time away from the forums and so please don’t worry if it takes me even longer to reach back to you 

In the meantime, please know that I’ll be thinking of you and sending you some very gentle and caring hugs at such a difficult time 

I look forward to talking with you again soon 

Take care of yourself,

ShiningStar 

[Fireflyseeker]

Hi @ShiningStar .

So sorry to hear about your migraine headaches.  It sounds debilitating and awful. 

The magnesium sleep supplement doesn't seem to be helping any more unfortunately.  But my psychiatrist mentioned an antidepressant that might help me with sleep.  I will talk to her about it in my next session. 

I don't really have much support ATM.  But I'm used to that. 

Yes. I was supposed to break up with my boyfriend.  But that didn't really last.  

I think I am suffering from depression.  I probably have had a low level of depression for quite some time but on the weekend it was worse.

That's OK if you need to take some time away.   Thanks for letting me know 🙂

Take care x

[ShiningStar]

Hi @Fireflyseeker 

It’s so lovely to hear from you 

Thank you so much for your kind words - migraine headaches can be extremely debilitating My GP recently mentioned that I may be able to take a preventative medication which is something that I’m going to look into 

I’m so sorry to hear that the magnesium supplement isn’t having the same effect that it was when you first started taking it. It can be so disheartening when all of a sudden, the positive changes that we’ve noticed plateau or they stop altogether. I really admire your determination to continue to search for a solution to the challenges that you’re experiencing and I think that exploring the possibility of an alternative medication with your psychiatrist is a really great idea 

It can be so lonely and difficult when we have so little support and your words ‘but I’m used to that’ really resonated with me, as this is something that I’ve said too  In my experience, people rarely explored what I meant when I said this and as such, they often just assumed that I was fine! Unfortunately, this couldn’t have been further from the truth and what most people interpreted as a throw away comment or a meaningless phrase, was actually my way of saying how hurt and angry I felt in relation to being forced to manage certain situations by myself. As I thought about this part of your story, I just ever so gently wondered if this is something that you can relate to?

I’m so sorry to hear that you may be living with depression and my heart goes out to you I was diagnosed with major depressive disorder several years ago and it can be a really tough road to travel. I noticed that you shared ‘on the weekend it was worse’ and I just ever so gently wondered if there was something in particular that happened for you during this time?

Thinking of you and sending you some very gentle and caring hugs 

Take care of yourself,

ShiningStar 

[Fireflyseeker]

Hi @ShiningStar ,

I hope that the preventative medication works for you.  I can only imagine the pain you go through.

I've been taking a melatonin anti depressant for about 6 weeks now.  I've seen limited improvement in my sleep.  But my psychiatrist has recently doubled the dose so I am guardedly hopeful.

I certainly wish I had more friends/support.  But I have finally made it to the top of the eating disorder Queensland wait list and had my 2nd session today.   Altho I spent most of it crying.

I broke up with my boyfriend (again) 4 days ago and I have chosen to have no contact with him where possible.  But today at work I didn't avoid him.  Altho I kept the interaction to a bare minimum and only talked about printer paper.

Which left me feeling even worse.  It was like we were strangers and it tore my heart up.  I had to leave work and cried all the way home.

And all I want to do is reach out to him.  But if I do I know nothing has changed.  He still doesn't love me enough to leave his wife. Or as he likes to put it, he's not leaving his daughter.

Anyway I'm hoping that spending 2 hours crying this afternoon might mean I have a good sleep tonight.

Let me know how you go with the preventative. 

[ShiningStar]

Hi @Fireflyseeker 

It’s so lovely to hear from you 

Thank you so much for your kind words  Unfortunately, time ran away from me this year and so I’ve decided to schedule an appointment with my GP in the New Year to discuss the possibility of trialling a preventative medication 

Oh Wow! That’s great that you’ve been able to attend two appointments with one of the counsellors at Eating Disorders Queensland  Participating in therapy can be an incredibly emotional experience - especially when we’re participating in difficult conversations and sharing parts of our lives that are extremely personal and painful 

I’m so deeply sorry to hear that you’re no longer in a relationship with your boyfriend and as I read this part of your story, I could really hear how much distress you’re in  In my experience, the pain associated with the loss of a relationship can be absolutely excruciating and my heart goes out to you 

Oh Fireflyseeker  Finding ourselves in a situation where we have no choice but to work alongside someone who has hurt us so deeply is incredibly challenging and in my experience, this can make it virtually impossible to find any respite from the distress that we’re experiencing. 

Absolutely  It can be truly heartbreaking when the person that we love changes and they no longer interact with us in the way that they use to when we were in a relationship together  As such, I just ever so gently wondered how are you taking care of yourself during these times?

It’s completely understandable that all you want to do is to reach out to him and just from what you’ve described, it sounds as though you’re waging an incredibly powerful battle between your head and your heart  In my experience, resisting the overwhelming urge to contact the person that I loved and desperately wanted a relationship with felt unbearable and as such, I can really appreciate some of the challenges associated with this. With this in mind, I just ever so gently wondered if there has been anything in particular that has helped you to be able to manage such a difficult situation?

Please know that I’m thinking of you at such a difficult time and sending you some very gentle and healing hugs 

Take kind and gentle care of yourself,

ShiningStar 

[Former-Member]

Wow! I had no idea Nocturnal Eating Syndrome is an eating disorder! I haven't been officially diagnosed with it but I eat overnight almost every night of the week so maybe I've possibly got it.
When I'm really upset I tend to sleep all day so then I eat at night time. On days that I do have to be awake for excursions, I will eat during the day and if I'm stressed that night, I have a sleep for a couple of hours, get up to eat for a couple of hours and then go back to bed. I find that loss of appetite during the day makes my nocturnal eating a lot worse when I get hungry at night time due to starting to feel less stressed and not as upset because night time is a more productive time for me to read and do some house chores when I feel more peaceful.
When I have to get up for an excursion the next day, I tend to eat as early as possible in the afternoon so that I'm too full to eat overnight. It's the only way for me to cope with that. Otherwise I wake up overnight feeling hungry.

[Fireflyseeker]

Hi @ShiningStar .

So sorry to have taken so long to get back to you. 

Have you been able to trial any preventative medication this year?  If so,  have you been able to get some relief? 

The saga with my ex continues somewhat.   We broke up 3rd December and since then I've managed with varying levels of success to avoid contact.   But it becomes too much and then I reach out to him.   I have just gone no contact again this morning.   My aim is 60 days no contact.   But that seems like forever away so I am breaking it down into 5 days at a time. 

I continue to have appointments with the EDQ practitioner.   So far nothing has shifted for me.  But I have incorporated protein powder into my eating as she said I want getting enough protein. 

But I have still been unable to do anything about the nocturnal eating.   I am however only waking up 2 or 3 times a night so that is an improvement.  But I still eat every single time. 

I hope this email finds you well.

[ShiningStar]

Hi @Fireflyseeker 

It’s so lovely to hear from you 💜

Please don’t worry 💜 I’m often running so terribly behind myself and so I can really appreciate how there are times in our lives when it may take us a little longer to be able to reach back 💜

Thank you so much for checking in with me 💜 The last few weeks have been fairly hectic and as such, there are days when I don’t know if I’m coming or going!

Although I managed to visit my GP last week, the time just seemed to run away from me and as such, I wasn’t able to ask about the preventative medication. As such, I’m hoping that I’ll be able to schedule an appointment for some time next week so that I can begin to explore some of the options that may be available to me 😊

Oh Fireflyseeker 💜 I’m so sorry to hear about what’s been happening for you in relation to your relationship with your former partner and my heart goes out to you 💜 In my experience, the sense of yearning that you described can be absolutely excruciating and as such, I can really appreciate how challenging it must be for you to resist the overwhelming urge to reach out to him 💜

As I listened to this part of your story, I felt curious when you mentioned that you were striving to achieve ‘60 days no contact’ and as such, I just ever so gently wondered if there was something significant about this particular length of time?

I’m so sorry to hear that ’nothing has shifted’ for you and as I sat here thinking about your experiences of participating in therapy, I began to reflect on my own recovery. As such, I can still remember the time in my life when I first began participating in therapy and how despondent and scared I felt, as despite my very best efforts, nothing appeared to be changing.

As such, I just ever so gently wanted to reassure you that it often takes time to begin to understand the eating disorders that we’re living with and address the underlying issues that have contributed to these. With this in mind, I think that it’s amazing that you’re still persevering and participating in therapy and although it may not seem like it, every step that you take is another step towards creating the change that’s important for you 💜

Oh Wow! Waking two or three times a night is such an incredible achievement - well done! I would love to hear a little bit more about how you were able to achieve this - but only if this is something that feels safe and comfortable for you to share 💜

In the meantime, please know that I’m thinking of you and sending you some very gentle and healing hugs 💜

Take kind and gentle care of yourself,

ShiningStar 💜