Lived Experience Forum

[26aqua]

Hi @Judi9877 

I've been following your story on this thread, can I just say you give me inspiration. You have faced some very difficult situations in the last 2 posts you made and you're doing great at seeking alternative ways to work through those emotions. And staying positive.

I'm not sure what parcs is and have a brief understanding of spectrum, they are located out of my area, but wonder if a local program might be worth looking into for myself. 

I got my official confirmed diagnosis on Monday, bpd and cptsd. My s/o left me that same morning, before I could even tell him what I was dealing with. I haven't been dealing great at all. 

I left work early Monday, had Tuesday off but kept myself busy doing things and went to visit my shop (closed for building repairs) to see works progress. Chatted with my manager about work stuff but felt exhausted by the end of the day. I had a slow day on Wednesday, I was just heavy. I put it down to my medication but I really don't think it was that. Rather a physical response to my feelings. I've been easily irritated and get angered easily too. I need to try some here and now strategies. 

I'm interested to see what you find helpful in coping techniques and also what might help you with regulating emotions. 

These are areas im definitely struggling in. 

I've been listening to alot of music. But find I tend to attach to lyrics and feel the emotion behind them. 

I'm lacking direction, feeling very alone (in thoughts and physical sense) and lost. It all feels too much at once. 

I did make a plan to clean my room today, I was able to tidy it but the vacuum wasn't sucking properly. I ended up googling a you tube video on how to take it apart and repair it. I left 4 screws out at the end 😂 I don't mind laughing at this, I knew at the time I should have checked the steps, I was just too keen to see if I made a difference - which I did not, but I didn't break it either and I gave it a shot. It needs a service anyway, I made it easier for them! 

So doing things, hands on things help me distract I guess. 

I've practice some mindfulness with the smiling mind app too. 

Having my room tidied and rearranged with furniture and pictures and ornaments replaced and dusted, I have a quiet space with gentle reminders, scented candles and fragrance, a safe space for me to escape when it becomes too much. So I look forward to practising mindfulness tonight. 

Good luck with your move! Stay safe and well wishes 💙💜💙

[Judi9877]

Hi @26aqua @BPDSurvivor @Shaz51 @WIP @BlueBay  and all forumites here. How are you going? If anyone is in Victoria right now, I feel for you as I'm located in Melbourne and not really enjoying the lockdown again. I'm in the process of moving and it's chaotic to say the least with cleaners, removalists and bad real estate agents!

@BPDSurvivor @26aqua Just thought I'd let you know that I had an assessment at PARCS over a week ago- 2 Thursdays gone- and although I've been accepted, things changed yesterday morning. I can't be accepted for a bed yet because of all the moving between properties and will have to ring psych triage for a new referral on 7/3 to get in hopefully within 2 weeks after that. It works out better all around as then I'll be more settled in terms of housing and I should be in a better mental state to focus on the programs they have to offer.

@26aqua I'm a little stressed right now to follow up your earlier discussion but I did have a useful resource or 2 you might like to look up. One is called Borderline Personality Disorder for Dummies book which I found to be a great resource despite it being American. The other is a foundation called BPD Foundation which offer great things in their website. Spectrum in Victoria is another great resource which the wonderful @BPDSurvivor knows plenty about. I'm pretty sure they have a website and do training and things but I'm not 100% on everything they offer. Hope that helps you a little.

Okay! Knitting calls in the form of a beanie that I'm helping to ease the stress of moving- last day tomorrow at our current property before we get the keys to our new property on Tuesday- so I'll talk later.

Stay safe and stay strong forumites!

Judi9877🥰🧶🌈🏖

[BPDSurvivor]

Hey @26aqua ,

My sincere apologies, I missed your last post dated back to 6 Feb! So sorry! 

Im sorry to hear that your s/o left. However, I definitely have to acknowledge your proactive spirit in getting up and doing things so that you don't wallow in your emotions. Good on you!

As for PARCs, they are Prevention and Recovery Centres - either a step up into hospital, or a step down from hospital. Or in my case, a preventative measure to stay OUT of hospital. I have found PARCs immensely useful. I've been about 5 times, and I get so much out of them because I can focus on my recovery goals. It gives me connection with others, amd an opportunity to attend recovery and education groups. PARCs has been my lifeline. I worked damn hard in PARCs and really focused on recovery. For pwBPD, I believe it's a much better option than an inpatient unit. There are clear admission guidelines so that if you do not abide by them, you're out. This kept me accountable. Look into it. My local PARC has just had a changeover of management, and I've been told it's changed a lot. In other words, every PARCs is different depending on management. The PARC you are admitted to is determined by where you reside, and you must have a residential address in order to be admitted.

@Judi9877 , thanks for the update. I agree it must be challenging to move in the midst of a lockdown! But you know what? At least you are occupied during lockdown! It's hard when people are stuck at home with nothing to do and no where to go. 

Are you in Summer school? Is that why you have uni tasks? My uni doesn't begin until the end of Feb. 

In terms of your PARC assessment, you usually need to be admitted within 48 hours of your assessment. So yes, I can certainly understand why you'd need a re-referral. Are you thinking of leaving it for a bit until you settle into your new property? How are you managing with your MH at the moment?

Missing you all,

BPDSurvivor

How is eeveryone else travelling? Hi! 

@BlueBay @Andrab @Judi9877 @WIP @Nells @Shaz51 @Aniela @JJ4 @vashi @BPDrose @Luca33 @Sarah_850 @Olliesmum @asdfge @SunflowerMe @magical_journey @Tbo @sarvan @Snoopy56 @Ellan @sanity41 @Laylah @Flossy92 @Bow @BPDSurvivor @Jacaranda84 @LouisianaM @Andrab @Theodora @Et68 @26aqua @LostAngel @Healing_Journey 

[Judi9877]

Hi @BPDSurvivor  Thanks for tagging me! With uni, it's online so not summer school as such. For Privacy and confidentiality reasons, I can't mention what uni but I'm do a psychology based degree and yes, uni has well and truly started! 

As for PARCS, I understand the re-referral process because they were holding out because of me trying to get a new rental property and then the whole move thing and the stability of new accommodation. It works out well because I'll be near the end of my uni assessments when I get admitted with the only thing changing being the fact that I've moved but still within the PARCS district. My mental health is bad with stress and me feeling like I'm in a sort of depressed phase so I do need PARCS assistance in case I deteriorate further. My moods are down and so is my motivation. My GP will be fine for the rereferral as he'll just adjust the details to make it relevant and updated with my new address. 

As for me right now, I'm watching the tennis - Ash Barty 4th round match which is really good at the moment along with knitting my beanie. It's a great stress release after doing more moving today. Things are bound to improve like they always do!

Take care.

Judi9877

[BPDSurvivor]

Welcome here @TG1108 and @BPDCarer1 ! 👋 

[BPDSurvivor]

Awesome @Judi9877 !

Now the uni stuff makes sense! Psychology is so interesting. I've completed a psych degree out of pure interest. 

I hope PARCs will be a good respite for you. Take advantage of every opportunity while you're there.

Im glad you're relaxing now, watching the tennis. You totally deserve it! Please take care!

Im reading a book at the moment (very interesting book set in a bookshop in the heart of Melb city), and feeling hungry. This is the down side to certain meds... makes me feel hungry! If I can fight the hunger, then I'm all good. Anyone else have this prob? I'm still working on titrating my meds so I'm eventually med-free. But being cautious so not doing it too quickly.

[BPDCarer1]

@BPDSurvivor Thank you for the add!

I am a spouse of someone who has recently been diagnosed with BPD and I am struggling to cope living with his ever changing temperament. We have three young boys and he can be very (verbally) aggressive around us. Is there anyone here with BPD who has young children? Or any spouses of someone with BPD? If so, I would love to hear how you manage. 

Hubby has been referred for DBT therapy but there is a waiting list. He is also on a waiting list for a psychologist and psychiatrist. So at the moment, he has no support except his GP, who does not have mental health training and has no recommendations, so we need to do our own research. He wants therapy, he wants to get help, but it's difficult to find bulk billing specialists who understand BPD.  I am based in Adelaide - Are there any BPD resources for people diagnosed, and also carers?

Hubby was diagnosed with BPD just 2 weeks ago and it makes sense. I look back and understand things so much better now. I've been with him for 18 years and I always knew he had mental health issues. I helped him manage, but when our eldest son was born 6 years ago, he changed. Then we had twins 4 years ago, and his mental health took a downward spiral... 

My husband was finally diagnosed with BPD after a suicide attempt. He was very lucky not to do permanent physical damage, but finally he was diagnosed with BPD, which has made us both understand everything more clearly. 

Hubby is 45 years old. He had an extremely abusive childhood - physical, emotional, and sexual abuse, with an extremely narcissistic mother and a harsh and unforgiving stepfather (his real dad died when he was just 1 year old). His mum had 4 kids to 3 men and he was treated differently by his stepfather, as he wasn't his biological child. So yeah, I can totally see how the birth of hubby's own children were probably triggers for his BPD... 

Enough of our story for now! It's all very new and we are both trying to deal with our new reality, so I'm looking forward to hearing from others here 👍

[BPDSurvivor]

Hi @BPDCarer1 ,

 Your story only rings so true to many affected by BPD whether through lived experience or as a carer.

First and foremost, I'd like to point you in the direction of The Australian BPD Foundation's eBulletin Issue 42 (Jan/Feb 2021). As you scroll down, you'll find details about a new MH facility in SA, as well as details about an online connection for BPD carers (based in SA). I myself, originally from NSW, relocated to Vic before finding the support I required.

I've always wondered why I have BPD because I don't recall events of abuse etc. However, working with a trained therapist allowed me to see that my 'normal' childhood was not so normal. My early childhood experiences coupled with my personality, resulted in the development of unhelpful, harmful coping/survival mechanisms - hence the CPSTD related BPD.

I remember receiving the BPD diagnosis in NSW, and I also remember the doctors' and nurses' reactions - they saw my case as 'beyond help', 'untreatable' , 'waste of resources'. I was lost and didn't know where to turn. I plummeted into depression and anxiety.

To cut a long story short, I was one of the lucky ones. I was referred to Spectrum (personality disorder specialist clinic in Vic), and was accepted sooner than I'd expected. I completed a very thorough 18 months MBT (mentalisation-based therapy). This was only the beginning of my recovery. This started to shift. From then, I worked over 2 years with my area mental health team until only two weeks ago when I was discharged.

I honestly feel so so well and totally in top of things. I've developed the strategies to live very successfully with BPD which likes to pop its head up once in a while.

All in all, I wouldn't exchange my BPD for anything. It's been such a great journey of learning and discovery. I see the value in supporting others to see there's a way forward. However, the BPD stigma needs to be broken because I know first hand what it's like for doctors or treating teams to see the BPD diagnosis, then completely shrug you off. It makes my blood boil!!

So yes, @BPDCarer1 , it will be a long journey, but there is light at the end of the tunnel.

As a carer:

1. set clear boundaries - this will protect you, your kids and your husband. Boundaries help us feel safe even if we kick up a stink.
2. do what you say, and, say what you do. Be consistent!

3. open and clear communication. Eg, if you're late for an appointment, communicate this. This helps reduce the anxiety and fear that you have forgotten us.

 There's so much more you can do as a carer, but these are the three main points.

All the best!

BPDSurvivor

@BlueBay @Andrab @Judi9877 @WIP @Nells @Shaz51 @Aniela @JJ4 @vashi @BPDrose @Luca33 @Sarah_850 @Olliesmum @asdfge @SunflowerMe @magical_journey @Tbo @sarvan @Snoopy56 @Ellan @sanity41 @Laylah @Flossy92 @Bow @BPDSurvivor @Jacaranda84 @LouisianaM @Andrab @Theodora @Et68 @26aqua @LostAngel @Healing_Journey @TG1108 @BPDCarer1 

[BPDCarer1]

@BPDSurvivor Thank you for referring me to the Australian BPD Foundation's eBulletin. I have now signed up for these and I read the latest issue with much interest. How wonderful that Adelaide will have a new Urgent MH facility! Hubby has presented at ED twice, first with suicidal ideation, and again after his attempt, and he was treated with so little respect. I struggled to get information about him from nurses, and we were made to feel like an inconvenience. And after discharge you are thrown back into the community with just your GP as support, who usually has very little MH training. Then it's up to you to follow up your own community treatment, which has criteria and wait lists. A specialised Urgent MH unit should be mandatory in every capital city, and beyond!

I have now contacted Sanctuary, which is a carers support organisation in SA. I am still looking for a suitable psychologist for hubby and myself. You're right, there's a huge stigma. Our GP said many psychologists won't touch people with BPD as the condition is in the "too hard" basket. I wish there was a national list of psychologists who DO deal with BPD!

It will be a long wait for DBT therapy - Is DBT the same as MBT therapy? However, I actually feel relieved that hubby finally has an actual diagnosis of BPD. His behaviour over the years makes sense to me now. I understand things better. And thank you for your uplifting words about living with BPD. You have given me hope in the long journey ahead. 

[BPDSurvivor]

Hi @BPDCarer1 ,

It definitely takes a dedicated team to support people with BPD. I was definitely a lucky one and had an amazing treating team which carried me through about 5 years.

During discharge from my area mental health treating team, I said I wished the service I received would be extended to all people with BPD. To this, I received the response "Yours is a rare case. We usually don't take on people with a BPD diagnosis." That's why, even to this day, I am in total awe that I have received the care I required whilst in the public system. Even the private system turned me away because I was too acutely ill.

So yes, I guess I'm a lucky one. Hence I believe it's only right that I reach out to others to assure them that BPD is perfectly treatable. Recovery DOES come. 

I've come to the point where I acutally am pleased to have had the experiences with come with BPD. I know i've grown so much as a person, and now I can help others. Even as I look back, I can see how far I've come so that the person I am today, was not the person I was this time last year.

I believe that if you can stand by your husband and find the support he needs (and you need), you will get the best out of him. You'll find there's a pearl there.

Just remember, it has taken 40+ years for your husband to reach the state he is in now. Don't expect everything to be perfect overnight. It will take time to unlearn unhelpful habits and create new neural pathways in his brain leading to a healthier, sustainable lifestyle.

All the best. Keep us in the loop!

BPDSurvivor.

Hi everyone else! 

@BlueBay @Andrab @Judi9877 @WIP @Nells @Shaz51 @Aniela @JJ4 @vashi @BPDrose @Luca33 @Sarah_850 @Olliesmum @asdfge @SunflowerMe @magical_journey @Tbo @sarvan @Snoopy56 @Ellan @sanity41 @Laylah @Flossy92 @Bow @BPDSurvivor @Jacaranda84 @LouisianaM @Andrab @Theodora @Et68 @26aqua @LostAngel @Healing_Journey @TG1108 @BPDCarer1