Lived Experience Forum

[BPDSurvivor]

Hugs @Judi9877 ,

I'd also like to thank you for your lovely post and contributions to the forums. It's soo good to be able to build a culture of care and support around MH. 

Well, I had my last appointment and discharge with my area mental health team today. We spent a time reflecting on the therapy and work over the years. It was mentioned that I am highly suited to peer work, particularly in advocating for those with BPD. It was also mentioned that my case was a rare one because the current model of care in area mental health is episodic care which means clients have a 6-week period with the team then are discharged. It was also mentioned that usually, people with a BPD diagnosis are NOT taken on as clients due to the nature of the illness! This is something I want to further delve into for anyone who is interested. To me, it didn't make sense. People with BPD need a longer period of care!

Dear fellow-Borderlines or carers of pwBPD, I totally understand that you may be at a total loss as to where to find help! I wish the treatment I received was offered to all. But I also want to emphasise that it was HARD work on my part - I don't believe my area mental health public service would have kept me on if they didn't see the damn hard work I put into recovery!

So here I am. I still have a community psycho-social support worker I see regularly. I now also have a private psychologist whom I've had the pleasure of working with in the public system in the past.

Although there is a 're-referral' pathway if things don't work out, I've told my area mental health team that once people have emotionally 'grown-up' from the emotional instability that comes with BPD, there is very little research to support relapse. So now, it's about moving onwards and upwards!

I hope you will all also be able to taste of this in due time.

@26aqua , I can definitely relate to feeling 'energised'. It happened a lot to me to the point where people thought I was manic. However, it was really my inability to regulate my emotions which was the problem.

The defusion technique is about finding ways to make a space between you and what you are feeling. That is, to see a situation from an objective stance. For example, I used to be triggered when someone shut the door. To me, I felt the people was shutting me out of something and therefore I would get soo angry and begin raging. This was because I was 'fused' with emotions. Conversely, if I look at this objectively, I would go through the reasons why the person may have shut the door: 

- there was a draught

- it was too noisy

- they didn't want to disturb me

This is just a brief explanation. It is something I am always mindful of so that I don't let emotion overtake me.

I hope it makes sense.

Hello to everyone reading:

@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 

BPDSurvivor

[Shaz51]

❤❤❤❤❤ @BPDSurvivor , @26aqua , @Judi9877 , @WIP , @BlueBay 

[26aqua]

Hey @BPDSurvivor 

I appreciate hearing about your recovery, and the hard work from yourself it entailed. 

I think, from people experiences I've read (elsewhere) people are focusing on the disorder rather than recovery - for me I'd like to see far more on recovery, I want to get better. 

Maybe it is the stigma associated with BPD, a common myth that BPD is not treatable, pwBPD are bad. I know I'm a kind, compassionate, empathetic person when I'm not caught up in the midst of my intense emotions. 

I have already received the initial primary diagnosis of: emotionally unstable, personality disorder, borderline type. And further psychotherapy to determine if there are other mood disorder/s. (Discharge summary) I shouldn't be surprised, he did verbally tell me. 

Ok, the defusion technique, i guess I can say I've already been trying it. More practice needed. I do try to tell myself the person has very reasonable explanations of why they did/said xyz. And has been successful in one or two situations. 

I downloaded the smiling mind app, I had read on another group it has been really beneficial for mindfulness, I'm willing to give it a go! 

Question for all, when it comes to mindfulness and other activities like selfcare, do you regulate these? I.E, set scheduled times to meditate, walk, art etc? 

Do you find this is more helpful or can lead to disappointment if its not achieved, so if something came up and you couldn't do activity and what happens then? 

I'm feeling a little empowered, this is a part of me, not who I am. I can get through this and have a fulfilling and meaningful life. 

Much kindness to all 💜💙💜

@BPDSurvivor @Shaz51 @Judi9877 

And everyone else who isn't coming up in the tag...

[BPDSurvivor]

Hi @26aqua ,

Im glad you downloaded the smiling mind app. I hated mindfulness, but this helped me a lot. Well... to be honest, I didn't really appreciate it until I learnt the science behind it - the power of the breath.

A quick run down of the science:

- each time we inhale, our heart rate goes up.

- each time we exhale, our heart rate goes down.

- if we are anxious, our sympathetic nervous system sends a spike in our heart rate.

- to bring this back to equilibrium, we should breathe in through our nose, and exhale in a ratio of about 1:2 (our exhalation time to be twice as long as our inhalations).

- this will reduce our heart rate so we become calmer.

- it also helps with sleeping because breathing this way reduces our body temperature. It is this lowered body temperature which allows us to sleep.

Hope this makes some sort of sense.

As for self-care, I schedule in everything into my day. I schedule a time for walking, eating, reading, talking on the phone etc. I have found this very comforting to know my day is full and I am not wasting time. I don't think this is BPD specific - just a way which works for me. If anything, when people see how ordered and planned my life is, they get a shock.

I found this need for an ordered life kick in because for a long time, I suffered under the hand of depression & anxiety and could not get out of bed or the house. I NEVER want to go back to that state, hence I make sure I set achievable goals for myself each day. I am able to go to bed each night with the satisfaction that I've achieve some, if not all, or my goals. 

I set clear boundaries between home and work. I do not bring work home. Work stays at work. This means my home is my refuge and place of rest. This is part of self-care. Life's too short to spend it all on working. Need the balance. I make sure I have outdoor/nature time everyday to get the fresh air, and I practise my breathing throughout the day. Practise makes perfect!

Does this somewhat answer your question? @26aqua 

Im happy to see you have the drive to be proactive about your recovery. It makes all the difference.

Hugs,

BPDSurvivor

Hello to everyone reading!

@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 

[BPDSurvivor]

Another passing thought @26aqua  - I do believe STIGMA plays a huge part in how pwBPD are treated. Sad, but true. That's why I want to change that. To make people know that having BPD is not a life sentence. That having BPD does not mean you are horrible. That having BPD does not mean you are hopeless and untreatable.

Rather, having BPD means:

- you are highly caring and compassionate.

- that you feel deeply passionate about things.

- there's an amazing journey ahead.

- you are a precious pearl in an oyster's shell waiting to be released once you have had the perfect irritants make you the best person you can be.

- you will find out those who really care about you.

I am NOT a BPD 'sufferer'. I'm a BPD warrior!

@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 

[26aqua]

Heyyyy all

The funny thing is, I try to tell my going-on-15yr old daughter about the breathing, it was already explained to us during times I put my girls into therapy. 4-6-8 was the technique taught to us.. and the science. 

Ah, I guess I need to try to force this upon myself. 

I'm trying to get into mindfulness, but I'm also finding i seem to be detaching alot at the moment, trying to push those intense feelings aside - I know it isn't helpful, possibly its been to get through the week that was! Ah, and what a week! 

I've been pretty bloody good at work though, but that is likely due to the feeling of being needed, appreciated and feeling like I'm giving someone else a little help with my knowledge and guidance. 

Home, well, I've been fairly good with kids, I've been able to stop and walk away when I'm feeling it's becoming a little too intense (going back to school is always stressful and the added financial drain of books, shoes and a new uniform requirement 😑). Really I've done exceptional so far.

I've only had brief contact with s/o, regarding picking up work boots, via text. It didn't happen. 

Its frustrating because I said he could pick them up, but I wasn't ready to talk about anything and I was having a down morning (when he had texted), I was warning him I wasn't able to communicate effectively and it wouldn't be the best time to talk, I also said I wanted to see my psychologist or the cmh pyshc before we talked, I want strategies I guess to help with effective communication, he replied he wouldn't stop by and no answer to my reply 😑. I didn't get my long sleep in like I wanted although I did get a decent amount of sleep (only it felt like it id only just gone to sleep) and had to deal with 2 work calls before 7.30am.

I'm still struggling with the fact he ignored my requests Tuesday morning, which ended in a meltdown. 

I'm feeling like I'm very alone atm. I feel confused even, really not sure what I'm feeling, but there is anxiety and energy, so I'm guessing what you had said earlier about having more energy when not able to regulate emotions is spot on too! 

And stigma, well, I've already read in 2 discharge summaries I am belligerent and manipulative - this being said with the diagnosis at the bottom! (I need to stop reading those!) I had just experienced a violent outburst (they are always directed at objects or myself) and was asking for help, asking for them to listen to me and take me seriously and not send me away with "see your gp". I couldn't calm down no matter what I tried, which was why I presented. It felt like I was exploding, continuously, on fire. That is the feeling I hate the most. 

Ahhhh... anyway, might be time to phone a friend and have a chat.. might get me out of this - whatever feeling. 

Warm wishes to you all... 

@BPDSurvivor @Judi9877 

[BPDSurvivor]

Hi @26aqua ,

 Thanks for sharing!

Im so pleased with your efforts this far in reaching out and trying new things. It certainly is a challenging time, particularly for parents when they send their children back out into an unpredictable world (not to mention the added strain of school fees, uniforms, shoes, books).

Just a note, in Victoria, the government can provide assistance if eligible. For example, CSEF for costs educational programs, and State Schools Relief for uniforms, shoes etc. Ask your school if you feel the need.

Im in the education sector and am sooo happy to see the kids once-again be able to socialise at school. We don't realise how important socialising is for us until it's taken away (COVID). This is not only true for children, but for all humans. We are social beings. I picked up a very thoughtful quote recently:

"People change people; because people NEED people."

 Without people, we slowly waste away in our own thoughts, sorrows and problems. Hence, @26aqua , as hard as it is, you need your children, and your children need you. The 'conflicts' that arise encourage us to reflect on our own actions. I used to blame others for any occasion of conflict. This did not help. Mentalisation based therapy (MBT) encouraged me to see that I can't change others - I can only change myself. I stopped playing the blame game and instead, re-considered by owns thoughts, feelings and actions. This gave me a different perspective which allowed me to act differently.

As for breathing... practise, practise practise! Don't expect to be good at it without practising. I do it everyday throughout the day and still consider myself less than a novice.

In terms of your discharge papers, it sounds quite crude to label someone as belligerent and manipulative! I've only ever read one discharge paper of mine which simply stated the BPD diagnosis. I don't read others because I don't find it helps the situation. I already know my weaknesses - I don't need someone to tell me.

Anyway, soldier on! I'm keen to explore this BPD journey with you.

BPDSurvivor

[Judi9877]

Hi @BPDSurvivor @26aqua @Shaz51 @WIP @BlueBay and all forumites here. I'm in a mixed mood of good and bad with my emotions so life is hard right now.

Good news-

I've got a PARCS interview tomorrow as I found out my GP had been sending the referral to the wrong email or contact details via a call to Psych triage on Thursday night for a bizarre and freakish episode. 
I've been dealing with my emotions today by picking up a granny square crochet blanket and using the repetitive motions of the crochet hook to help me deal with the emotions. It's for my housemate/friend so it's kinda special. 

Bad news-

The property manager of our rental had a Vcat hearing yesterday that we knew nothing about so of course, said property manager lied and won and therefore, housing has now upped to the desperate level along with all the emotions to go with it. I have never known a property manager to lie so much and threaten us and get away with their behaviour. Hopefully things will change soon.

I've got another uni counseling appointment tomorrow to discuss uni and possibly deferrring for a period because of the stress of housing and life so again, wait and see I guess.

Thanks for your support forumite friends!

Judi9877

[Judi9877]

Hi @BPDSurvivor @26aqua @Shaz51 @WIP @BlueBay and everyone joining the thread. How are each of you travelling these days? As for me, things have improved to say the least.

To start off, I had my PARCS interview yesterday and the good news is, they'll accept me once I have stable housing. That was at 2pm but this is where it gets weird yet better. I had an inspection for a rental property on Tuesday and got speaking to the real estate agent who said they had been  having trouble receiving our applications for some reason which is why we had been getting rejected for properties. The agent gave us their card and told us what to do- text them to let them know we'd applied online. Sure enough, just before I was due to go to my PARCS interview, I got a text message with several probing questions that the agent desperately needed answered. I spent the interview answering PARCS stuff yet worried about what was going on with housing. Sure enough, a voice message was left during the interview which I dealt with later after I picked my housemate up from shopping to be told that we had secured a rental property from Tuesday! Talk about lucky! The only thing is, I have to get out of my rental property by 15/2 due to the property manager of our current rental taking us to vcat for some unknown reason that we didn't know about til a call came through on Tuesday afternoon so things have been stressful yet worked out perfect at the same time.

I want to work at coping strategies and emotional regulation since the emotions have been hard for me to regulate lately and have been causing me issues. I've also decided to drop back to 1 uni subject - politics- and take the stress off that way. 

Thanks for your wonderful support forumites!

Judi9877💐😎

[BPDSurvivor]

Hey @Judi9877 !

That's great news! Yes, PARCs cannot accept people who don't have stable accomodation because they don't want you to leave at the end of 4weeks without somewhere to go to. So yes, accomodation and having an address is a MUST.

It's similar to Spectrum who also only take people who have stable housing. This allows clients to focus on recovery. 

So good! Thanks for sharing all the good news! 

Hip hip hooray!!!! Let's celebrate!

BPDSurvivor