Beyond just surviving.

@Phoenix_Rising

I HEAR YOU!

To be honest thats why I'm not in any therapy or seeing a pysch, I have felt very let down by the system and just rely on myself. I know I have improved of late and dont know what caused it to finally happen. Sometimes I wonder with how my partner used to be and his hard approach to me (treating me like a child, giving me consequences etc) while he didnt go around it the right way maybe the tough approach has helped me to snap out of it a bit and help myself more. Maybe its just me that for some weird reason it has helped or the fact that I was so sick of how things were going I knew even if it felt wrong I had to change - I don know. Like you I have been struggling since I was diagnosed 6 years ago officially but in reality since I was about 10. Even my partner used to say those things to me like " you have been so called trying for years and you still havent got passed the first step" god it makes you feel so hopeless and like there is no end in sight. I have sort of come to the conclusion whether right or wrong that we will never be rid of BPD or whatever and all we can do is find coping strategies to get through but I feel I will always struggle, not necessarily plumet to where I was but it is also going to be something I have to keep working at I guess. What other alternative do we have, if we stop trying we will be a mess too.

But one thing I always think of when I'm feeling down for all your same reasons is the movie " as good as it gets" with Jack Nicholson and Helent Hunt. I ask myself that all the time and I also ask are we wanting more because we have been brought up in a society that protrays life on TV as fairytale happiness and if you dont have that there is something wrong - maybe this is all it is and we have expected too much??

With the triggers maybe its a matter of desensatising yourself to them but thats hard. Thats where I think my partner helped without realising. When I started to get a bit better, his reactions to me had changed which helped my triggering. In the sense I would react a certain way because of triggers and usually with confrontations but of late he has not behaved like he used to so I guess that gives me more confidence. On the weekend he had a melt down started to behave like before and I noticed I started to get all triggered again. He even started blaming my BPD for his feelings and everything else but I said to him nicely while he was yelling and screaming " yes I have BPD but who is the one freaking out now - not me" and he has been very quiet since and not so angry.

I dont know what I'm trying to say except somehow you need to expose yourself slowly and gently to triggers to train your brain that its ok to be exposed to those things. I know one trigger I still freak out over is my mother, the thought of bumping into her somewhere to the extent the odd time I am near her place I will try not to drive past. Unfortauntely she lives 40 minutes away from me so I cant just keep driving past but I do need to resolve this somehow as I know its not healthy.

All I can say @Phoenix_Rising is that I know where you are coming from and feel the same.

Hello @Phoenix_Rising,

I can really hear how much you feel as though there is no hope left with finding someone who will help you to get through managing your pain and reducing those huge triggers. I am not sure how you continue to get through each big wave but somehow you do, no matter how painful it is. I guess all we can do as human beings is keep trying new things as someday something might shift and really help, you just don't know when or where and even if that wil happen, but if you don't keep trying than you will never know (as cliche as it sounds).

It seems as though what you need is perhaps some more help or something else to also assist you right now, that is more than grounding techniques and tools as you try them and they do help sometimes but not always, maybe something more fulfiling and has meaning, even a goal that is positive and you can focus on to get you through each big wave. Do you think that would help at all?

It's tricky because I know how passionate you are about about mental health and after studying so many years you are more than qualified in that industry but pushing yourself to work might be too much for now. Now seems like it is really about getting better and coping with the big waves so you don't want to push yourself too far and become stressed, but also in finding something that gives you meaning might also help you to cope.

I am not thinking just work, but other things that you want to do in your life, an interest that really super fulfills you?

I don't know if I completely went off track, as there is so much to this and I really don't want to simplify anything in your life, as I can see the pain you are feeling in this, here for you @Phoenix_Rising I think you have so much to give others and that is such a wonderful and positive quality of yours as well as many other great qualities.

Lunar ❤️

Hi @Change123,

Thank you for your long and thoughtful reply. Even though we share the diagnosis of BPD, I do wonder similar our situations actually are. It sounds like your partner has played a big part in supporting you. I've never had a romantic partner.

I definitely know a "tough love" approach doesn't work with me. I've had a LOT of consequences for my "bad behaviour" - four apprehended violence orders, other people threatening legal action if I didn't stay away from them, and every person who has ever mattered to me walking out of my world. I have had people say to me "why don't you learn that your behaviour is unacceptable." At 39, I still don't have the remotest idea what they mean...and no one has ever stayed around long enough to explain it. On that front at least, I am done now. I know I won't do the friend thing again. I don't understand it and it hurts far too much.

I definitely don't seek a fairy tale life. I simply don't want to be reliant on welfare. That's all. I want to be able to pay my own way. I want to be able to go to work and gain the social and financial benefits of that. That isn't some idealistic dream - that's what the majority of the Australian adult population of working age does.

I'm trying to imagine how I could desensitize myself to triggers. I don't live in a laboratory - I live in the real world. I am very self aware about what I can and can't cope with. For example, last week I went to that committee meeting on Wednesday (I think I wrote about it in the worry room). I knew it would be super difficult, but it was important to me so I spent all day using all the tools in my toolkit to get regulated enough to cope with it. But how on Earth do I do any sort of systematic desensitization to random events that come out of nowhere? The event of last Thursday was completely out of the blue. How can you desensitize to those sorts of events? How can I slowly and gently expose myself to such unexpected and overwhelming events?

Can I ask you something @Change123? What does a "meltdown" look like in your world? It seems to me that people use this word to mean very different experiences. For me, a meltdown looks like dropping to the floor, screaming, headbanging, verbally stimming (because I can't find my words) and rocking. It seems to me that people sometimes talk about a person with BPD having a "tantrum" when they are overwhelmed. My meltdowns aren't tantrums - they are meltdowns. That is, it doesn't matter what others around do (e.g. ignore, threaten, shame etc.) I will continue in meltdown mode until the massive wave of emotion has passed and I am able to regulate. I guess that's why the "tough love" approach makes no sense to me.

Anyway, super big thank you for sharing your frustrations around mental health professionals @Change123. We certainly have that in common! As I said before, I don't have much hope that my current psychologist can actually help me in terms of "doing therapy", but given how socially isolated I am, having her there for social support and as an advocate if and when the need arises is much better than her not being there. I really do super like her and given that she and my GP are the only people in my real world, I am super grateful that she is there.

Thanks again for taking the time to reply.

Thanks @utopia. I do plan to keep going with the neurofeedback, assuming I am welcome back there and I don't have to pay. I know I will now be going in there hyper-aroused, which may be kind-of cool in terms of trying to train my brain to have the right brainwaves happening when I am in a distressed state. I'm not going this week because, well, quite frankly, I have no idea what's going on, on that front at the moment. I will have to wait until Monday to hear from my regular psychologist what the plan forward is.

Hi @Former-Member,

Thank you for sitting with me in my muddle. I DO believe there is something out there that can help me and many others like me...but I fear it is still a few decades away. As I've said before, I am sure that in even just 50 years, they will look back on how mental illness is treated today and laugh at how primitive it was. I truly believe that the answers lie in neuroscience...and how many mental health professionals do you know who are up on the latest developments in neuroscience??? Research in this area seems to be oh-so-slowly filtering through among mental health professionals with a particular interest in trauma, but generally, most of them seem to be doing little more than teaching clients coping skills.

You are right that I need a goal to focus on. The lack of such a goal is the crux of my muddle. For twelve years my goal was to get my degree and thereby have a career. Next month it will be two years since I handed in my dissertation and thus completed my degree. I handed in my dissertation one Friday, and then the following Friday I had the final massive public showdown with my psychologist of sixteen years, complete with bystanders calling police, me getting taken to hospital etc. etc. And I've been stuck ever since.

How do I find a new goal @Former-Member - one that is meaningful enough to help me keep on keeping on after X happens? I can keep myself alive...but I can't see a reason to do so. I super love playing my violin - that is my "special interest." I normally play for 2-3 hours a day, and I think my record is 5 hours. But even though I super enjoy it, I'm not sure that it will be enough to motivate me to keep on keeping on after X happens.

I want a job, @Former-Member. I am so very very VERY scared of getting booted off the DSP and onto Newstart. My mortage repayments are more than the newstart payment. I don't have ANYONE, @Former-Member. I don't have family I could move back in with, I don't have a friend who would take me in. If I can't pay my mortgage, I will lose my house and I will be on the street. How can I be in this position after all the time and effort I put into my education? Isn't that the mantra we always hear - education leads to employment. Well I did the education bit and now I want the employment bit!

I'm sorry, I'm just being grumpy because I am scared. The reality is that I'm ok right now. Right now I have a roof over my head and food in the fridge.

@Former-Member can I ask you a question? You said something about how right now is about getting better. What does "getting better" mean? I think something I'm struggling with more and more (and so is A and my GP) is trying to figure out what bits of my muddle are BPD-related and what parts are ASD-related. The psychologist I was with for sixteen years described me in a report as the most severe case of BPD he had ever encountered. However, I realise now that what he was seeing wasn't a particularly screwed up borderline, but an aspie with BPD.

I think for me, the idea of "finding the right fit" works better than the idea of "getting better". At least some of my muddle is NOT BPD related, it is simply who I am. I just really really really need someone to help me find where I fit in this loud, chaotic, ever-changing, socially-driven world.

Super big thank you for caring about me @Former-Member.

Hi @Phoenix_Rising

Apologies if I didnt explain myself properly with the fairy tale life, I'm not saying thats what you want its I guess I was in a way referring to myself. You are brought up with certain expectations of life which may not be viable in our world thats all.

My meltdowns, well I have to say they have got much better but initally I would mentally feel like my brain was spinning, I couldnt make sesnse of anything and when people talked to me it was like "blah blah blah" and major frustration of not getting my feelings across to my partner or him not understanding I would yell, scream throw things, litterally lie on the ground in a fetal position rocking crying so hard. Physically I would feel sick, faint and my whole body would hurt with my heart punding through my ears and often wouldnt remember much of what happened. At that time my parnter was not supported and was abusive. While I was lieing there wanting to die he would laugh and mock me and even say things like "would you like me to get you something to finish yourself" . You cant imagine how much worse that would make me feel and then I would just scream, cry and throw things. I know now all I wanted him to do was to hug and hold me but the more he treated me like that when I was in that state just made me worse and worse. He was not supportive until just recently, because he has bipolar that is unmedicated and I feel in denial as he always blames everything on me and bpd. You have no idea the vial things he would say to me like "he hopes I have an accident on the way home and die". Things only changed with us about 8 months ago, this is the longest ever in our 30 years relationship that he hasnt turned on me. You dont know how many times I considered ending it all making plans etc, the only thing that stopped me was my dog. The love and loyalty he has shown me and he knows when I'm down and will just come up and cuddle up to me and give me licks - thats what kept me alive.

Over the past few months I have been able to control my rage and frustration by either walking away from the situation and having some time out, or spend time bymyself with my dog outside, breathing excercises - I just do anything it takes to stay calm. I dont think I have had a proper "meltdown" since my experience with the ed last year when I was all over the place. Not sure if you read that post but basically the first time I had put my hand up for help in my entire life, I never presented to a hospital before but I felt so out of control and was worried what I may do to me or someone else. Instead I was mocked and told to go home in short which made me even worse.

I think that experience made me realise that I have no one to support me (no friends no family and at that stage no supportive partner) so I guess I made a choice some how whether to live or not and I chose to live but realised that I would have to do this on my own with no ones help not even a pysch. I cant answer what clicked inside me to make me see myself differently and to realise I need to do something as I cant go on like this.

Triggers I still get them all the time and yes like you react automatically, but the big ones which was my partner and the way he use to treat me I knew something had to change or we would end up doing something physically to each other. At first my brain kept telling "why should I he is the one treating me badly when I have a MI and he thinks I have been doing it to manipulate him" at that stage he was with a carers group that would fill his head stating all we do is manipulate, decieve and do anything to get our own way and that the hard tough love approach is the best as I'm just trying to gain attention. Then I thought of it as an experiment and would react opposite on purpose ie. if he got snappy with me I would go all caring and nice instead of snapping back at him. I think I had so much anger towards him I never contimplated being nice as I didnt think he deserved it but when I started doing that he responded so it lessened the triggering effect.

Maybe the best thing I did for myself was the emotional disciplines, I think I was at that point where you are thinking why doesnt this stuff sink in why do I keep going in circles. I guess then I started to think at it from another point of view and stopped trying to ovrcome bpd and thought look I am a very disciplined person usually with everything else maybe I can tackle this from another perspective and thats what I did. I gave myself one discipline to get through the day i.e no rage and if I did it I would reward myself with a glass of brandy, sweet treat or something so my brain started to like the rewards. Then I would move onto another discipline like no negativity and do the same thing with rewarding myself at the end of the day if I achieved it. Soon I didnt need the reward because I was getting a kick out of achieving it, then slowly I would put them together and so on and so on. I think it made me more mindful without realising thats what I was doing. Now I may still react but I know straight after that it was wrong where I used to have to have it explained to me. Sometimes now I still get those horrible thoughts but I say to myself outloud "my brains making stories up again". I guess what I'm trying to say is sometimes you have to tackle it in a different way but I cant say what will work for you.

Believe me I still wonder how I made it so far and why I'm still here and by the way I still dont feel like I fit into society and feel like a total freak at social functions.

You will get there @Phoenix_Rising, I'm nearly 50 and only just getting there so its been a very long long road for me too.

Hi @Change123,

Thank you for another very thoughtful reply.

It sounds like in some ways our situations are very similar and in other ways very different. The way you describe the verbal abuse by your partner sounds very much like the abuse I experienced from the psychologist that I was with for sixteen years. I can definitely relate to how much worse it makes one feel, when one is spoken to in that way, especially when already in extreme distress. My psychologist would call me a stupid f****** borderline and f****** evil etc etc when I was severely dysregulated. My mum used to say the sorts of things your partner says too. Like him, she would offer up objects for me to use to suicide, when I was in crisis. I remember once when I was in a severe suicidal crisis, my mum told me that if I go and suicide, she wouldn't bother claiming my body. Yeah...I can't imagine why I struggle with such a muddle these days...

It super sucks that there are still carer support groups out there touting the line that those of us with BPD are manipulative. That is definitely super unhelpful. I am super grateful that I FINALLY have a psychologist who does at least get that I am doing the best I can at any given time - even if my best is the sort of thing you described; lying on the floor and rocking.

My psychologist and I have come up with plans and strategies around dealing with the emotion dysregulation in her office. For example, yelling isn't ok because everyone in the building can hear it, but hitting my toy turtle on the floor is fine, as is rocking and stimming. Also, after initially having a no-touch policy, she has shifted to being ok with putting her hand on my back when I'm lying on the floor or the couch. I am always snuggled under a blanket (which she got for me) in her office and when I'm super dysregulated she will now put her hand on my back and it has a very strong calming effect due to the oxytocin it gets going in my brain. So yep, I definitely hear you when you say what you really needed was for your partner to hug or hold you.

You mentioned that you only sought help from the ED for the first time last year. Have you had previous dealings with them? Most of the times I've been in the ED have been because the police have taken me in. I can certainly relate to the total lack of support you got in the ED. That's why I find it so absurd when people suggest going to the ED or calling 000 when in crisis.

It sounds like the emotional discipline thing worked super well for you. I guess for me, the reason I'm coping as well as I am these days (which actually is a lot better than in the past) is because I no longer have people in my life who cause distress on a regular basis. Walking away from my siblings after my mum died twelve years ago definitely helped a lot. And then, finally getting away from my abusive psychologist in 2015 helped a lot more.

Now I just need to figure out how to deal with the out-of-the-blue triggers. I'm curious...you spoke a lot about meltdowns in the context of your relationship with your partner, do you (or did you) ever have any in public spaces? This is my biggest challenge now. Having now had two very serious situations in two different workplaces, it has totally smashed my confidence. As I've mentioned on various threads, I can truly see how I could end up in a death-by-cop scenario because the police do not handle people in crisis well. This is where I feel super stuck.

Thanks again for your response @Change123. Whether I will "get there" or not, who can say. I do feel that if I could just have 6-12 months of calm, that would go a very long way to healing my brain. The event of last Thursday was just so totally and utterly out-of-the-blue, it has really smashed me. But for now I know I will just keep swimming.

Hi @Phoenix_Rising

In regards to the ED, no I had no dealings with them previously, I have never gone into an ED for mental health before. The nurse I had was actually my old DBT teacher who I found was incredibly insensative when doing the course. My dog of 4 years died from lymphoma and the way I am about my dogs they are my kids and this happened right at the begining of DBT, I was greiving and in shock and in total despair. She told me off in the class once for using the DBT class as a greiving outlet - like WTF! Anyway she had always beena bitch and I remember her telling frequent ED people that they should not go to the ED as its only for emergencies and we are not classed that apparently. I actually made a formal complaint to the health services of sa and of course she got away with it because it was her word against mine but I hope it has made her think for the next time she treat a BPD person.

The only mental health support I had was GP and a pyschologist for a little while but then my partner made me stopped seeing her becuase this group he was in states some people are worse off for therapy??? My GP never really monitored me so after my meltdown at the ED I saw her and asked about having a pysch review for the purpose of getting my meds checked - which I did get done and found my anxiety meds were very very low and since they have been increased that has helped me a lot too. I too have tried lifeline and have had someone fall sleep on other end and someone while I was balling my eyes out put the phone down and walk away and come back - it just makes you feel all the more hopeless. I have come to the conclusion there is no mental health here and even those in mental health sector have discrimmination about BPD people as we are just known to be big kids having tantrums.

No not since I was a teenager, boy I remember once at home (my mums place) I was only about 17 and my partner and I were very volatile then and I remember having a huge meltdown when my mum wasnt home and we lived in units. I started hurling glasses (drinking glasses) at a brick wall that adjoined our wall and our neighbours. I dont think anyone was home as no one came out or they were too scared. But now no usually being in public prevents me from having a meltdown, dont know why but I guess I have my "face" on when around others and can hide it until I'm on my own. But I have had incidents of bad rage inpublic where I have lost it with people who I dont know due to their rudeness. Once and the most embarressing where I was having issues with our post office for work. Long story but the people were rude and purposely being difficult and the issue had gone on for over 12 months and was not rectified. When I spoke to the " manager" he actually said to me " now listen here girly" and boy was that a trigger and I just went off at him and told him that he couldnt organise a fart in an arsehole and some other things I wont repeat. Not my best moment and so unprofessional I still feel ashamed for that even though he was a total idiot (had a better word but wouldnt let the post go through)

And yes you are right having a few months will heal the brain, I think thats what has happened with me or helped me that we have been reasonably calm. You cant think straight when you are always in a crisis mode.

Take care @Phoenix_Rising and dont hesitate to ask anything else if you think it will help.