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Hi all

Hi all

Hi there,

So, it's a big step for me to log on here- I have been thinking about doing it for a while but never had the 'guts' actually to do it.

I suffer from multiple diagnoses, (C-PTSD; BPD; ED) and after recently having another hospital admission first to the med ward and then in psych, I got to a point where I decided that perhaps it was time to start to look at recovery. Now, however, I'm not so sure whether I truly want that and it's like living in a nightmare... The constant "toing and froing".... being scared of getting the supports in place that the hospital wanted on discharge... dealing with the ED voices telling me that I should start restricting again and that I'm not worthy of recovery... falling off the wagon and bingeing...

I don't know whether I can take this. Recovery is a bitch!!!

27 replies

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In response to: Hi all

Re: Hi all

@BPDSurvivor Wow, well I don't know how to respond...

For me they've mainly treated the BPD and not the ED, because for a long time they didn't believe there really was a problem. Don't you just love the system?! (NOT). And yes, like you said, when things are spiralling out of control with the BPD (& C-PTSD), good ol ED comes to the rescue and takes over.

As I mentioned to Jinx, I found ACT to be much better that CBT & DBT (Crap behavioural & diabolical behavioural in my opinion!) but it's just the practising and putting into place that I find difficult. Never tried MBT because it's not been something I've been able to access easily.

I'm just so exhausted mentally that I'm giving up on recovery. I don't think you can ever be "truly/100% cured". This is based on 24 years in the system..

In response to: Re: Hi all

Re: Hi all

Actually, I agree @Ausgirl with not being 100%. Different people define ‘recovery’ differently. For me, I think recovery takes a lifetime. Although I can now live very successfully with my BPD, I don’t have the confidence to say I am ‘recovered’. I don’t think I ever will be. I’ll just have to wait and see.

It’s great that your BPD was treated over your ED. I guess they knew it was the BPD urges driving the ED maybe? Focusing on the ED first and foremost may be like putting a Band-Aid over an infection but never dealing with the infection. Of course I don’t mean to say your ED is not a real thing! You know your experiences best.

All the best. It can be tiring, but absolutely worth the journey.

BPDSurvivor

In response to: Re: Hi all

Re: Hi all

@BPDSurvivor 🤬🤬🤬 how was it good that they chose to ignore the ED and not treat it for years?!?

Sorry all.... I thought things would be different on here, but boy, I was wrong.

Take care and Goodbye.

In response to: Re: Hi all

Re: Hi all

Hi @Ausgirl ,

I’m sorry you feel that way about the forums. I believe the above post mentioned treating BPD over ED (not ignoring it?)

You are welcome to visit other parts of the forum also, into those focussing on EDs if you prefer.

You can use the message tags at the bottom to from these ED threads.

tyme

In response to: Re: Hi all

Re: Hi all

Sorry @Ausgirl if I made you feel invalidated in any way. It was not my intention at all.

Please don’t let me or my one post stop you from gaining from these forums. I am one person out of the thousands who post on this site.

Once again, I’m sorry for what has happened. I know your BPD is real. I know your ED is real,

BPDSurvivor

In response to: Hi all

Re: Hi all

Hey there @Ausgirl

The idea of recovery can be so overwhelming. It's really easy to stick to what we know even if what we 'know' is a very negative place. We can be comfortable there. One of the most helpful articles I've read on recovery is this here . It's a UK website so mentions NHS so ignore that part but the rest of the info and ideas is super good.

One little step forward at a time is the key to me and not being hard on yourself when you have a bad day.

Sending hugs,

Hanami 💮

In response to: Re: Hi all

Re: Hi all

Hey @Ausgirl I hope your still around and giving the forums another go. I think I understand where you are coming from, where health professionals ignore ED and only want to treat the MH issues. I’ve had many medical complications related to my ED, just last week I was in hospital again and I actually had a good experience with the staff in the psych ward taking my ED serious, but let me tell you it hasn’t always been that way! I had a trip to the emergency room with low potassium, it didn’t change after a drip so the dr said I needed to stay in. But then I was cleared by mental health and the dr changed his mind and said I could go home. Did that mean that my physical health…. My ED was not as important as my mental health?? I was so angry. I cried a whole heap and was rather rude to the unexpected nurses (I did apologise). It’s really sad and unfortunate that medical staff just don’t understand or take EDs seriously unless your so scary thin and nearly dying…. But we all know that folks with ANY kind of ED can get to that place very quickly.

Im wondering how your feeling about your upcoming appointment tomorrow?

As hard as it can be and as frustrating as it is, it’s great that you appear to have a good gp and case manager who are working together to best support you. I finally have a great team around me and I feel well supported. Do you have a psychologist?

Recovery is so hard. And I get the toing and froing!! I so totally get that. It’s really hard to imagine recovery is possible. Whenever I take some steps towards recovery and living a slightly more ‘normal- whatever that looks like’, my ED gets really really loud and angry and I swing back into restricting and it’s like taking 10 steps backwards. Sometimes it feels like things just get worse but my psychologist assures me that I’m not getting worse.

Hope your ok and that you’ll give recovery a go 🙂

🎀

In response to: Re: Hi all

Re: Hi all

@Bow Hey,

Thank you for the message, meant a lot to hear from someone else who 'gets' it.

I'm so sorry you had that experience in the emergency room, that would've been hard. It would definitely make you feel as if the staff thought you were 'faking' how unwell you were... (I'm guessing you may have felt something kinda like this?)

I recently had a med ward admission for the ED and the staff there 'hated' having a MH patient on the ward. The little snide comments that were made, refusing to talk at all to me when changing the feeds, administering the meds etc, asking the nursing special 'if they were ok with me' and then rolling their eyes etc... I wrote a big list of triggers and ended up handing it to one of the TL one shift because I just couldn't take it any more. What also really sucks is where I'm based in Australia, there's a statewide portal where all your mental health notes etc is kept. This portal, however, is separate from the medical portal and medical staff can't access it, so whilst in some ways that's a good thing, it also makes it very hard because they would then see that we're not all psychopathic killers etc (and even if we were) we deserve the same amount of respect as any other patient, and not to feel like a burden.

How am I feeling about tomorrow? Well, scared and triggered. Scared that the GP will trigger and make me shut down and not want to come back again. Also worried that when they see my latest blood results they'll think I'm doing ok (because they were apparently all 'normal' according to CM) when deep down I'm not.

Currently, I don't have a psychologist, they want me to get one but financially it's just not doable, even with the MHCP. I'd still be out of pocket $70ish dollars each session, so basically, it's a choice of buying food (my entire grocery budget per week) or getting psychological support. Guess which one wins as much as I hate it?! They're looking at doing an NDIS application though, so hopefully, I may be able to get it funded through that as well as dietetics, as one of the peer support workers at the hospital said she gets both of those funded. I do know, however, that NDIS is getting really strict and I've already been knocked back twice because I was "too high functioning".😠 😞 If you don't mind me asking, do you have NDIS? If so, how have you found it?

In regards to recovery- well, I'm just so over it and people not 'getting' how freaking hard it is, so I'm probably gonna give up and let "Pia" (ED voice- named after a real bitch of a nurse in MH) and the rest of them win.

In response to: Re: Hi all

Re: Hi all

@hanami ty, tried to click on the link but wouldn't open anything??

In response to: Re: Hi all

Re: Hi all

Oh I have very much been made to feel like that too on a medical ward @Ausgirl I was tubed and spent 4 weeks on a medical ward last year and I felt like a waste of space, that I was faking it and in the end I was told I was being sent home no matter what my oral intake was….. so my tube was basically pulled out and I was sent home within the hour. Rather traumatic in the end. Medical wards are helpful cause we are physically unwell, but they don’t understand the mental side of things. And psych wards aren’t equipped either way really.


oh that does suck about the medical portals. The hospital notes and my community mh notes are all combined here, which is really good. Although I don’t overly like that hospital staff can all see my mental health stuff cause it makes it hard when you go in for physical stuff, all they see is the fact I have a psych history.

blood tests can be really invalidating!!! They don’t show the true struggle we are dealing with every day. When my bloods are bad it’s like good job ED. It’s reward. I hope that some good can come out of your appointments tomorrow! It’s always best to be honest, no matter how hard and confronting it is 🙂

do you have an ED mental health care plan? It’s different to the usual mental health plan. It gives you extra psychologist visits… 40 I think. I know that doesn’t solve the gap fee though for you. It also gives you 20 dietitian appointments. I don’t pay a gap for my dietitian. if you have an offical ED diagnosis then you should be able to get an ED plan.

I’m fortunate that I was finally picked up by my local community mh team. I have a psychologist, case manager and psychiatrist through them.
i have no need for NDIS at the moment I guess. But am looking at applying for DSP. That stresses me out though.


how long have you had an ED for?

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