BPDFamily.com

Hello everyone

This is my first post.  I have visited the site from time to time over the last six months and learnt a lot, thank you!  My daughter (27) was finally diagnosed BPD earlier this year after well over a decade of symptoms. After a six month wait, early December she joined a weekly 'bridging support group' the NHS has set up as the waiting list for DBT is around 1 to 2 years. They set up this group to support the most vulnerable in crisis. The group meets for 2 hours weekly.  Good report back so far, welcoming group etc.  The leader of the first session took DD aside as they knew each other via a friend, she told DD everything shared was confidential and kept within the room. DD was impressed the session was led by someone who had BPD, who understood. So far so good, DD wants to get better and is engaged. She is reading widely and has just passed to me 'Mindfulness, for BPD' by Blaise Aguirre. Living in hope, and one day at a time.

Wendydarling,

thank you for the optimism and hope you offer |iiii

Hello Wendydarling,

So glad you are here and great to learn that your daughter is in a support group that she feels accepted in.  It's important for us as parents to learn the same skills that our kids learn.  We can benefit from applying them to ourselves and at the same time hold our kids accountable for using them.  It's a win win and these are hard to come by!

I look forward to reading your posts in the future and how you and your daughter are progressing.

lbj

Hello twojaybirds and Lbj and thank you for the warm welcome.  I have widely researched over the last six months, DD and I are presently on a parallel journey which is great. I've waited for DD to take the responsible lead she needs to take, and it's working so far. The wonderful thing is, DD has taken up the gauntlet and is actively campaigning, speaking out for mental health and is interested in exploring a change in career. She presently works in the music and film industry.

DD is finally on the UK NHS BPD/DBT medical radar and on the waiting list, I met a DBT therapist in September but that was only because I had been phoning daily over a few weeks to find out what the plan was.  The therapist shared that most adults who present themselves with BPD have no or little family support and I was an exception of a few.  :'(  I was shocked to hear that, I live in London, it may be true.  The interview was mainly focused on how I am coping as a carer, it is a legal requirement they have to carryout.  I was heartened to hear the therapist say her focus on the journey is to find the nugget, ie what has driven DD to where she is now. The answer we all want to find and that which has escaped us, despite how hard we have tried.

Wishing all our children and carers a happy year ahead.

Life is looking up, so I thought I'd track progress via a monthly thread during 2016.

I'm hopeful after 2015, a year of despair, which involved one hospital stay (overdose), two hospital visits (cutting), many crisis's, etc, anxiety attacks, raped, on-going alcohol abuse, life just fell off the edge. The episodes and turmoil resulted in a diagnosis and as you see above DD (dear daughter) is now attending a bridging skills group while she waits for DBT. Last year was a plea for help after more than a decade of running away and hiding from her illness.

My DD is fortunate to have an exceptional group of friends who have been awesome and I can't thank them enough for standing by her and supporting! One symptom my DD does not display (yet?) is rage and blame, which just shows how diverse the BPD diagnosis umbrella is. My heart goes out to you who suffer this constant hurt and pain from your loved ones.   DD still lives with me, it's outrageously expensive in London. She stayed with a friend (15 years her elder) Oct-Dec last year and rested, lived a quiet life and looked after herself, stopped drinking, took meds, vitamins, ate well and went to bed at 11pm, (though suffers sleep paralysis and nightmares). She took time out of work as needed with the support of her employer. She mainly works at home and this has been helpful as she retreated from much social interaction to help her recovery. In November she was admitted to hospital with chronic pain in the pelvis, that's yet another story, the treatment was dire, it turned out to be a burst cyst but the invalidation from one Dr and a couple of nurses was outrageously upsetting. I overheard a young Dr telling a nurse the chronic pain was just in her head! I was livid and spoke with the Dr who apologised to my DD. She had an anxiety attack coming round from the general and was ignored by the one nurse in the recovery room. Anyhow, we have moved on but just to say we were staggered by the ignorance of BPD by some of the professionals. DD has established a good relationship with her GP who she meets with monthly.

DD symptoms: fear of abandonment, cutting, bulimia, depression (on meds for one year), anxiety (meds since Nov), some black and white thinking (not sure why and what triggers this), suicide idealisation, disassociation. She does get angry in some circumstances, but I have never seen her rage or blame anyone she loves, nor strangers though I do wonder if this has happened.

I'm immensely proud of DD and how hard she is working to find and use skills that work. Yes, I'm realistic events may change - I'm taking it day by day ... .at the moment I feel like I'm on a five star holiday, long may it continue.

Week 1:

Best ever week: DD in good, positive mood all week

DD has taken up running (I bought her some running shoes for Xmas). Her first ever run was Monday and she enjoyed it so much she ran everyday, yesterday she clocked 5k. She also attended a local yoga class yesterday . She was very happy with the work she produced for her employer and how easy it was - she has been practicing on thinking/focusing on one thing at a time. Started to de-clutter her bedroom and dressing room (10 bin liners so far) - she is buying a new bed, painting and making it a calm place to enjoy.

She attended the skills bridging session on Thursday - no one else turned up and she texted me at work to say she had a session with three therapists and it was great!

Having fun learning Spanish via an app called duolingo https://www.google.co.uk/search?q=duolingo&sourceid=ie7&rls=com.microsoft:en-GB:IE-SearchBox&ie=&oe=&rlz=&gfe_rd=cr&ei=HWWSVuv-NpOA7Qb_rIioCw&gws_rd=ssl

(https://www.google.co.uk/search?q=duolingo&sourceid=ie7&rls=com.microsoft:en-GB:IE-SearchBox&ie=&oe=&rlz=&gfe_rd=cr&ei=HWWSVuv-NpOA7Qb_rIioCw&gws_rd=ssl)

When I was in the pits of despair last year I never envisioned this progress ... .I hope sharing gives others hope.  

WendyDarling x

Welcome Wendydarlin

I also live in the uk. My BPDs is 25 and is currently living at home. He has never displayed any rage or violence, he honestly wouldn't harm a fly. However he can be quite verbally intimidating. He also can be inappropriate; he says he just can't bullxxxx anymore and do small talk. He got diagnosed last sept in the US. His GP refused referral and wants us to act tough love and throw him out. He only got referral last week via the A&E Mental health team. Hope he gets his first appointment in the next 2 weeks. This wouldn't have happened without advice on this forum. He was advised to see another GP about possible meds for anxiety and/or depression but, as yet, BPDs hasn't made an appointment. He's had a long term problem with drugs so any medication is a risk.

Your post really gives me hope. Your daughter seems motivated and I so wish 2016 is your turning point. She is lucky to have supportive friends as well as yourself. At the moment my BPDs has only one true friend but I know he gives him the occasional smoke of weed.

It's interesting that most parents don't stay around to support. We are in fact close to having to force him out. He has no motivation to change the current situation apart from lack of money. We've stopped enabling him in that way. He hasn't worked in 5 years and has very low self esteem and confidence. We really hope something positive happens in the next 2-3 weeks.

Thanks for your post

L

Hi Lollypop

Many thanks for your kind reply, thank you.  My heart is with you, I do hope your son receives the swift referral appointment he so deserves. My daughter has started to meet people diagnosed who understand her and she them and that experience has been empowering one, and could be for your son. Does your son acknowledge his diagnosis and want to learn how to get better? If so, would throwing him out be the right time?

My daughter waited 8 weeks for the appointment that confirmed her diagnosis and five months to get onto the bridging skills weekly session. Have you been able to find out how long the referral process to treatment time is?  Once your son has completed his referral and is allocated a therapist you will be able to make an appointment for a carers assessment, (they should call you in, they did with me as I was calling daily to find out what care my DD could expect). That way you should meet the therapist. The meeting gave me great comfort. I googled her ahead of our meeting!

I'm so sorry to hear the GP refused your son a referral with the US diagnosis. Sadly, it appears the only way to gain a diagnosis and access to treatment in the UK is via an A&E crisis visit.

Last night I watched a couple of NEABPD conference videos that in part covered medication. The main point appeared to be medication is fine as long as it is prescribed properly, one med at a time (not one on top of another which does not work), in consultation with therapist/psychiatrists and in small doses. If something is not working, take a break and yes try another if needed. My daughters medication for depression prescribed by a GP did not stop her being hospitalised, nor depression, I'm watchful of any further meds being prescribed and I understand your concerns.

Does your son's friend understand he is not helping him with weed? All these little things count. My daughter has stayed away from alcohol since last August, and her friends respect this and they now socialise with her in a positive way.

Lollypop, I wish you, your son and family well over the next few weeks, let's keep in touch. Despite DD's great week, the family guidance fact sheet says that's often followed by a crisis. I really need to record this year, hence my monthly journal.

Take care.

WDx

Hi wendydarling

Thanks for replying. It sounds so positive for you and family at the moment. So fantastic. I understand crisis is actually a positive thing as it brings about change. It's not easy to be the one to cause that crisis though.

All we've been told is that he should hear from the county community health team within two weeks. Your experience is really interesting and I realise now some of the questions we could ask. They can visit the house apparently. I can find out more then. He was committed to therapy for two months while in the US but hasn't read the book since he got back. it's dawning on him that it's going to be a long haul and going to take perseverance and hard work on his part - both of which he simply isn't used to. On black days he can only say how hopeless it all is... .he wallows in self pity. It's been a tough Christmas and this is why we thought we need to fully stop enabling him. He has to be willing to help himself. Anyway, things have improved since then and he is actually applying for jobs. This is a massive step.

He wants to get back to California, the quality and low cost of weed being a massive attraction. He says he will always smoke. However, because we aren't giving him money he smokes very little at the moment. We are seeing this as an opportunity, an open window, where he may just see the positives of a drug free life.  He doesn't drink alcohol as he just can't cope with it and reduced inhibitions. Last winter he gave up weed and replaced it with alcohol but then moved to cocaine; when drunk he has no control. He's managed to stay away from all drugs, except weed for a year so things are improving.

if he is helping himself then we will continue to support him by letting him live at home with food provided. But if he refuses to work or sign on for benefits then he has to leave; we dread that day but know we may have no choice and it would the the right thing to do for him in the longer term.

Good luck this month and I look forward to reading how you're getting on

L

Hi Lollypop, thank you, wow that's a massive step applying for jobs, as you say you have an open window, well done! I just wanted to recommend the referral/assessment appointment takes place in the environment your son will travel to and receive DBT, rather than at home. It makes it real and introduces him to the external environment he will be working in and you'll learn from his immediate response how it went for him.  Best wishes WDx

Thanks wedndydarling, I'll take this advice. Really hoping he'll hear something by next Wednesday.

L

Week 2: 13/1

First slight dip of the year: DD had her monthly touch base appointment with GP yesterday. I arrived home from work to find her in a low, annoyed mood (angry inside) because the GP refused to prescribe a further supply of anxiety meds 1) because DD had been positive and engaging, sharing her running accomplishments last week etc 2) they are addictive.  This morning she was low, but I arrive home and she is not here, looks like she has taken up an invite to go to a pilates class. That's a positive - though I need to have a further conversation about the anxiety episodes and what skills she can use to manage them. She has only spoken of anxiety episodes since November, so a new symptom, or not? She can talk about them with her support group meeting tomorrow morning. Tomorrow evening DD's great friend who she respects and loves to bits is coming for dinner. I'm cooking, they are washing up  :)

Hi wendydarling

It sounds as if you've really got excellent open communication with your daughter. My BPDs won't engage if he's in a black mood that can last for many days. I noticed yesterday evening he's back to his disassociative self and walked out at 10.30pm without saying goodbye (he obviously thinks is question him despite me never asking him where he's going for the last 5 weeks.

I hope your log really helps you keep perspective on those blips and successes. It helps me have an insight so thank you.

Hi WendyDarling and Lollipop . It's so frustrating that you have to wait so long for NHS treatment. I'm sure, like me Lollipop, if your son agreed to do anything positive you have to know it would happen quickly to strike while the iron is hot. I hate to say this but sometimes I wish he would attempt suicide/really go ballistic and be sectioned so he got seen to straight away and was in the system. Anyway glad things are looking up for you WD. Hang in there xx

Thanks and hi Lollipop and APR

Aren't those non communicative black moods the pits of pain for them and us. Last year was full of crisis and the diagnosis appears to have allowed her to stop hiding, isolating herself and running away and instead embracing who she is and allowing us to, too. DD is on anti-depressants - they did not help during last years crisis but I wonder if they are helping her now she is in a better place as I'm not seeing the low moods which prevented any good communication.  So far so good, but as we know things can change. Lollipop I hope you receive the appointment soon, if it's not forthcoming - phone again and again, it worked for me. I also hope there is not a huge waiting list for BPD treatment where you live (ours is over a year). The local NHS bridging supports skills session is a life saver - tried private BPD treatment last October which was a disaster. APR have to spoken with your GP? If your GP offered a referral for diagnosis would your son take it up? Is your son working? And how about you - have you talked to your GP about your emotional health? There are local community support groups that meet up if you think that would be helpful to you, you can find them on line.  Are you considering leaving the home because you are in danger?

Last year when my DD was in crisis through her tears and pain she screamed she was in such internal pain she could no longer bear, her voice rings in my ears and soul to this day. It shook her to her core and I believe that is why she is working so hard for recovery - she never wants to go back there ever, ever, ever. I find BPD a broad and confusing diagnosis. She started with one symptom and it's spiralled over the years.

I too wish for my daughter to live independently, successfully, safely and happily. I can only see that happening if she learns the DBT skills she needs to establish a foundation first and give her on going confidence. I know some say they learn from their mistakes - as DD is the one driving her recovery through small steps she can make at her own speed. I'm hoping in time independent living will rise to the top of her priorities. Wouldn't it be great if there were supported housing arrangements, to help them make the steps to independent living. I'm also interested in exploring if there are job and career coaches/mentors specialised in working with BPDs - a bit of research to be done. Lollipop I hope the job applications are continuing and your son is successful soon. Is your son interested in a particular kind of work? 

End of week 2 update:

Another great week, perhaps I should call them 'a normal week':

DD seems to have moved past the annoyance of not being prescribed anxiety meds on Monday, not heard a further word about it, but keeping my eye out - I have not seen any anxious behaviour this week.

DD has continued de-cluttering her bedroom, a bit at a time to avoid being overwhelming - 25 bags to-date(reminder to self - the room was a disgusting pit, booze bottles, cigarettes, dirt, ridiculous amount of clothes - reflecting the state of her mind and life - it's all going!)

The Thursday skills sharing session was cancelled, (boo! ) - they called to cancel but gave DD no explanation, DD thinks it's because no one turned up last week apart from her. DD accepted the cancellation in her stride. The session is not compulsory  very disappointed for DD - this is her life line till DBT starts. If it happens again I will call the lead therapist to remind them of DD's commitment.

DD ran Tuesday to Friday and went to yoga this morning, really proud of her, she tends to start something and then drop it. Fingers crossed this is here to stay. She has inspired a friend to start running.

Concerned to hear this morning that DD was out all last night, started with dinner at a friends and a game of monopoly, then moved onto a ping pong club at 10.30pm with other friends and then they went over to west London to a friends canal boat, finally slept at 5.30am and managed to get up and go to yoga at 10am.  She said she had a lot of alcohol - (which made my heart drop - after all her hard work!) but followed it up by saying 'that's my one night out a month' - won't be doing that in a long while. She has not engaged in that type of lifestyle since November - I think it was a very good reminder for her - how damaging it can be.

DD has been on the nicotine patches since November, that's another accomplishment.

Last February we lost our 16yr old cat Charlie, DD was so close to him. It was a pretty traumatic experience. Once the new kitchen is installed and home painted and DD's room is beautiful and well cared for I have agreed she can have another cat.  All her responsibility, this time round.  Cats are soothing, good decision.

DD dyed her hair for the first time yesterday, it's deep cherry and she likes it. She looks great.

It's my turn to buy a BPD book, read it and then pass it onto DD.

Set myself a challenge to see how many times I can make DD laugh next week.

WDx

End of week 3

Normal week

I've been working away from home Wed to Saturday 

Good news Wednesday, DD had a pelvic scan which shows signs of cysts or endometriosis, all clear, we hugged and celebrated :) One less thing for her to manage!

Wednesday evening DD went to see the Ruby Wax book show. DD is a big fan, Ruby is sharing her journey and speaking out. www.rubywax.net/ (http://www.rubywax.net/)

Thursday DD attended the 'skills bridging session' - only 3 attended, DD and two new people. Two former patients DD had met have opted for schema therapy as they can start the treatment immediately, and do not have to wait a year+ for DBT.  DD is hanging out for DBT as that is what she was told was the correct treatment.  So arriving home yesterday evening, DD was tired after a busy day, yoga, lunch with a friend, then spent the afternoon with a friend who is a vet. She made a lovely supper and washed up too! When I walked through the door I did sense she was on edge, a bit irritated and exhausted. The previous evening she had spent with a friend – I sense it may have been a ‘night out’ involving alcohol. 

Less running the past week due to pain in foot, DD has missed it – which is great! Running resumed today.

No progress on the bedroom de-cluttering this last week.

No signs of cutting since November, but without asking her I can’t be sure, ditto bulimia.

I wish to DBT could start soon (not in a year or so) – if DD is the only person who turns up every week to the skills bridging session I’m now hoping they see her as a committed patient, which this forum regularly states is a pre-requisite to succeeding.  Then again if they see her as coping due to all her hard work they might put her at the bottom of the list, I can’t even bare to think about that!  The lack of resources is SO unfair on everyone.  That’s it I'm going to ask for an update about where DD is on the waiting list, I know they will just say 12 months + - last told beginning of December, that’s nearly 2 months ago, I want to hear the list is reducing and the number of months wait is too!  I’ll write a letter this week.

I hope everyone is looking after themselves, I'm about to soak in a relaxing bath. WDx

End of week 4 - and end of this thread - I'll start a new thread for February next week.

Overwhelming week:

Last Saturday DD fell into a depression and exhaustion, that got progressively worse day by day, so much so come Wednesday - Friday I could see she was in a VERY dark place, de-regulating, disassociating and could see a crisis looming.

Last weekend she said she hoped it would only last a few days and that she was trying to ride through it, she also said she feels a cycle is emerging - once every 3 months.

Come Tuesday she was avoiding me, as soon as I came home from work each day she was out of the door. I was completely at a loss what to do - it's hard when someone is clearly sending signals, don't even think about speaking with me. Friday I contacted her best friend who also said she was worried having spoken to her a few times during the week. She invited DD to hers today to try talk a bit of light and see how dark it was. DD thought she had been invited to her friends yesterday and when she woke she was communicative, but disappointed to hear her visit was not until today.

Anyhow - yesterday I managed to get her to order a car to take the bags of de-cluttering that had been in the hallway for 2 weeks to the charity shop. She's in a better place now at least she is talking, and the odd smile appears. Of course I'm relieved but I feel absolutely burnt out by the episode and wonder what next week will bring. A reminder of how fragile her life is, it's easy to forget when life is going well.

So no running or yoga this last week, she did manage to complete some work (that's the saving grace of working from home), fortunately there were no pressing timelines. Last time she ran was a week ago - and was annoyed she did not feel relief as that is her reason for running.

How did the Thursday weekly bridging session go? No idea, not spoken about that yet.

I know she hates these episodes and is working as hard as she can to manage them. Fortunately she did not turn to drinking alcohol. Roll on DBT!

WDx