3 years since diagnosis, 14 months DBT, 5 months since DBT ended

[wendydarling]

Hi everyone  

3 years since diagnosis- crisis unfolded

14 months out patient DBT

5 months since DBT ended

My last update November 17

It’s 5 months since my 29DD completed 14 months out patient DBT, she came to the end of her entitlement with our UK national health service. DD is entitled to four DBT therapy sessions within 12 months, she not taken one yet, she’s been storing them for when in need and this week it’s arrived, she called them, she’s waiting for confirmation of the date.

Last September I was naturally concerned she’d relapse some way, DD was too, without ongoing professional support. I stood back from offering private DBT, to see how she’d cope, how she’d help herself and she has done just that so far.

DD helped herself, before Christmas she signed up to the drug and alcohol counselling she attended following diagnosis July 2015, a free service open to anyone, here UK. Alcohol was the first thing she stood back from. It’s a cheeky route she’s taken for her to talk with someone who understands (DD talks a lot, a lot!) provide her further support, for free.  The counsellor referred her to a free service that helps people recovering mental health get back to work, she’s yet to receive the appointment, she was not impressed by the literature that arrived by post.  A few weeks ago, DD received a phone call from another agency (that came via D&A) offering her 12 weeks free access to a local sports centre of her choice, she’s grateful people, services are reaching out to her since her discharge.  

This has been rising, DD is questioning if she is bipolar, this is from someone who has gained a good understanding of herself since her crisis in 2015.  :)D experiences cycles of mania and she’s struggled to place this within her BPD dx. Her therapist in the last session last September raised this as a possibility, DD’s raised with me many times since. DD’s planning to arrange an assessment, she’s put it off for a long time, it’s right there on the table now, I hope she’ll act, soon.

Tonight, DD shared with me this last week she spent 30 hours (she monitored her time) practising her DBT skills, that’s a four-day week and I'm wondering when she's going to reach out and get back to work, um, not quite yet!

That is where I am right now, DD continues to fight, push through to be well, on her BPD scale of 0-10 I’d say she’s 6, where she was late last year. I recognise she needs ongoing support and spoke with her father last night about putting this in place.

Phew, spring is on it's way here, DD continues on her way too and I continue to feel blessed she's reaching out.

WDX

Our objective is to better understand the struggles our child faces and to learn the skills to improve our relationship and provide a supportive environment and also improve on our own emotional responses, attitudes and effectiveness as a family leaders

[Harley Quinn]

Great news to read wendydarling!

It's wonderful to hear how proactive she is and I'm sure she takes strength in this pursuit from your loving support of her. 

Love and light x 

[Merlot]

HI Wendydarling 

There seems to have been a number of posts recently about those with BPD shifting blame and responsibility to others to avoid the reality of their own disturbing BPD behaviour.

I can hear from within your post, how much you care and love your daughter and I'm so glad for you that she has learned enough emotional intelligence through therapy to want to better herself, with your gentle guiding support alongside.

I'm grateful I also came here to the bpdfamily and hope for all of us here that we can learn, support and effect changes in our BPD children.

Thank you for sharing.

Merlot

[Hyacinth Bucket]

hi Wendy,

Echoing what others have said, it is really refreshing to hear your daughter 'owning' her diagnosis and working so hard at overcoming it. I hope that my own daughter will reach that point some day.

[Daisy123]

Your daughter is making amazing steps to be healthy. Bipolar disorder can be very tricky to medicate. The meds used to treatment bipolar and BPD are very similar. The lows in my own bipolar disorder are so heavy. The manias have been under control. Thank goodness for that. I wonder how your DD experiences her mood swings? Are they creating any cyclical patterns? You and your husband are so untuned with your daughter’s needs- that is awesome and 14 months of DBT is incredible.

[Yepanotherone]

So very happy to hear this WD , your gorgeous daughter is just doing so very well , taking responsibility for her health and kicking BPD’s butt ! I love it !

As you know , my DD also has a dual diagnosis of bipolar . It was severe rapid cycling bipolar 1 , then Bipplar 2, then non specified Bipolar . Then “ she may still be on the bipolar spectrum , its difficult to tell , we wouldn’t rule it out “  But in all honesty I don’t think she’s bipolar , nor do I believe she ever was . I think the proof in the pudding of this is that there was no improvement with the” bipolar” medications she was on for 2 years , and in fact they made her worse . Also , when my DD decided to come off all her medications despite all the doctors warning her against this , and with words of “ people like you won’t manage 6 months without medications “ ( I kid you not ! Those very words were said !)and as her parents we were told “ the longest a person can manage without bipolar is one year absolute max and then when they tailspin , it’s far worse than you’ll ever have seen before with your DD “. Well 12 months in and she still hasn’t tailspinned as predicted !
I did a lot of reading into bipolar when she was first diagnosed and it just never seemed to fit .
But nonetheless , bipolar and BPD are very closely categorized.

[Feeling Better]

WD,

What a great post, so uplifting to read about successes.

Your daughter is so lucky to have you in her team and I applaud you for the wonderful progress that both you and your daughter have made together. We all know it’s not easy and it takes a lot of time and patience.

You must be so proud of your daughter and I’m sure she will get back into work just as soon as she’s ready x

[wendydarling]

Hey thanks folks Harley Quinn, Merlot, Daisy123, Hyacinth Bucket, Yepanotherone, Feeling Better

It IS uplifting, you know what I sometimes have to pinch myself, she's come a long way from the awful days of A&E, the months spent in the amazing woman’s crisis home, me feeling numb, without legs…... .HQ you are right she is proactive, crisis set her into survival mode and me into ‘not on my watch mate’ reclaiming my DD, doing my very best like all us parents here.

Hah, thanks for making me smile Yep, kick BPD's butt, you bet - she’s doing her very best and reaching out to help others, so yes, I am immensely proud, she’s working her socks off! 

'Owning her diagnosis' – what flips that darn switch Hyacinth it was hitting rock bottom for my DD, I do wonder if age had anything to do with it for her, whether she was mature enough in teens, early 20s when she was trying to keep up with her peers, chasing what she thought was success, happy days. She knew things weren't right for a long time, her diagnosis helped her make sense of why she became so unwell & it really gave her hope in one day recovering, those are her written words, straight from this horses’ mouth.  She’s not the same person, in one sense and I feel tearfully sad at times, it’s hard to explain – she’s lost her bubbly, fun loving confidence, crisis knocked the stuffing out of her, she’s fragile, life is about surviving, that’s her existence, for now. It’s a long road reclaiming herself, a new her.

Feeling Better, DD worked in the music and film industry, she won’t be going back there, she’s revisiting her personal values and has her heart on Art Therapy (£7k fees a year) – she’s an artist, she wants to help others in need. It’s a good fit? I’m sure she’ll excel in the training, question is can she apply in the workplace, most are self-employed. First step will be a small part time job and see how that goes, reintegrating in society. I’m taking a baseline view that if she’s unable to work at any time in the future she understands her rights and is confident to make the decisions, choices necessary to look after herself, apply for social security etc, basics to survive. There is a lot of work for her to do here.

Bipolar? - thanks Daisy123 and Yep, I need to talk with DD more to understand and read the book she's referring to. I appreciate you sharing your personal experiences of meds, that’s very helpful of you. Daisy I can’t quite get my head around what she’s experiencing, it’s not clear to me and I think that’s because it’s not clear to her. She talks of waking some days and able to rule the world mania, other times unable to face the world, opposites. I hope she seeks help soon in understanding this, must get that book from her. It must be a great relief the high episodes are managed Daisy, I’m sorry the lows are heavy, how do you manage through? Yep it’s brilliant your DD continues to do well off the meds and a great sign of her taking ownership we all strive to see in our children.

Yes, Merlot keep going! I use the tools and lessons here every day, I learn something new every day. There is an opportunity every day and I’ll take it, that gifts me hope. One thing my DD said to me late last year when DBT ended is she feels kindness and gratitude and that it feels SOO good, said it all for me.
 
Got to go lie down after writing that folks,   seriously I have.

WDx

[MomMae]

Wendy,
Thank you for your ongoing honest sharing of your journey with your daughter.  You and your daughter are an inspiration to others... .Your daughter demonstrates that it IS possible to overcome DBT when you take ownership for your own situation and recovery... .  And, WD, your gentle support and encouragement of your daughter, while letting her take that ownership, shows how we as parents can put the lessons on this website into practice... .with great success! 

  MomMae

[wendydarling]

Hi MomMae, thank you for your kind words they mean so much to me - it's been a hell of a journey and I'm grateful to be able to share what's worked/ing for me. I arrived looking for hope and found it right here. And you are right, it is about her taking ownership of her disorder and her healing and she's doing just that, in her own good time. For those just arriving here or thinking of joining here's where I started  Lessons: What a parent can do?

Next week DD is attending a daily workshop Personal Development and Mental Health Awareness, to help those looking to get back into work. It's run by a friend of DD who last year set up a collaborative collective social enterprise striving to help those affected by mental health difficulties. It'll be the first time DD has had a week of routine to be there by 10am, I hope DD can, you all know what I mean  . I'm pleased as punch this opportunity has come and hope it helps her think through what next.

DD made me smile yesterday, she was contacted by a student journalist via twitter looking to interview people with emotional dysregulation. It was a pod cast interview, 20 minutes. After DD was full of joy, very proud of herself and laughing "Mum you know me, I like to talk so it was an hour interview, well there is so much to say! There certainly is 

[Merlot]

'Owning her diagnosis' – what flips that darn switch Hyacinth it was hitting rock bottom for my DD, I do wonder if age had anything to do with it for her, whether she was mature enough in teens, early 20s when she was trying to keep up with her peers, chasing what she thought was success, happy days. She knew things weren't right for a long time, her diagnosis helped her make sense of why she became so unwell & it really gave her hope in one day recovering, those are her written words, straight from this horses’ mouth. 

Hi WD,

I was also told by the psychologist that hitting rock bottom is the catalyst for some diagnosed BPDs to seek help.  My daughter seems to always have had a soft place to land.  It's a conundrum in some ways as I'm grateful for that soft landing for her as it means she and my GD1 are mostly surrounded by people who love and care for her, and from whom she can learn.

In my heart I would find it wonderful if my daughter could embrace a diagnosis... .I think that would be a great step forward.

Your posts give me great hope and it is so encouraging to consider the possibilities and positive steps forward.  She is very lucky to have you as you sound incredibly patient and supportive of her, as you are of us here at bpdfamily.

Merlot

Our objective is to better understand the struggles our child faces and to learn the skills to improve our relationship and provide a supportive environment and also improve on our own emotional responses, attitudes and effectiveness as a family leaders

[wendydarling]

Hi Merlot

I'm so glad my posts give you hope   that through your change of approach your daughter responds in time    It does take patience and that was a struggle for me, desperate for her to be well, only she could deliver at her own speed, as I have personally learnt from her, slow down and pull up a chair, we're in for the long haul. 

I was also told by the psychologist that hitting rock bottom is the catalyst for some diagnosed BPDs to seek help.  My daughter seems to always have had a soft place to land.  It's a conundrum in some ways as I'm grateful for that soft landing for her as it means she and my GD1 are mostly surrounded by people who love and care for her, and from whom she can learn.

I guess 'rock bottom' may mean different things to different people. This is what my DD wrote- remember this is post DBT and she's promoting the skills to others "When you hit rock bottom, you have two choices: You give up, or you say, enough is enough. And you start changing the way you’re thinking about things in your life and find a different way to make it better" - someone responded 'when do you know you've reached rock bottom?'

It is a conundrum as you say, what does a 'safe landing' look like for your daughter, is she being rescued Merlot?

WDx

[wendydarling]

Next week DD is attending a daily workshop Personal Development and Mental Health Awareness, to help those looking to get back into work. It's run by a friend of DD who last year set up a collaborative collective social enterprise striving to help those affected by mental health difficulties. It'll be the first time DD has had a week of routine to be there by 10am, I hope DD can, you all know what I mean  . I'm pleased as punch this opportunity has come and hope it helps her think through what next.

I wanted to share how DD got on as this is her next step in her recovery.
Sunday night, she organised herself, wrote a to do list, time to get up, how to get there, shower, hair wash, go to bed at a decent time etc.

Day 1 – overslept, she was furious with herself, gets really upset about letting people down, I left for work. She called the collective to apologise, they said they understood and look forward to seeing her day 2, she did not want to walk in part way through the day. She explained to me not the best idea to have taken sleeping pills.

Day 2 – woke on time and got there on time. Had a fantastic experience, interviewed by some journalists at the end of the day.  This one is for you Hyacinth Bucket, she left the house without her bank card! (not lost though) When she arrived at the tube station and realised this she called a Uber.  Uber there and Uber back and the collective offered to pay!  I guess they understand the most important part is she made it.
 
Day 3 – made it by public transport and arrived on time.  Another great day ……... wow this is going great, me thinks to myself.

Day 4 – made it by public transport and arrived on time.  Received a text late afternoon to say she’d was visiting her best friend, she was in a state, this was because day 4 was led by someone new and it was all about work and it triggered her bigtime. Her previous job was very chaotic, her boss (who was also her friend) was chaotic not a good mix, all those feelings, anxiety rose. Said best friend received a couple of hours of DD’s outpouring. DD said she wanted to save me from it.
 
Outcome – the collective is offering her some work! What kind of work she has no idea yet. This is brilliant, brilliant, brilliant what a great environment to ease your way back into work with people who really understand, they’ve been there. Her challenges will be waking on time, arriving on time, going to bed on time … being organised, you get it. This will be a great confidence boost for her and I know she’ll feel very proud working to help others struggling with their mental health.

She keeps, chip, chip, chipping away  

[Lollypop]

 wd

What fantastic news. A new routine to get used to and it sounds like a perfect re-introduction. I hope you’ve remembered to breathe this week, on tenterhooks I bet.

Well done to both of you. It’s been a long journey.

Hugs

LP

[Faith Spring]

Hey Wendy, I am happy for you, your heart must be beating out of your chest!  Thanks for showing the light and keeping the rest of us going.  It's wonderful to realize there's room for hope. 

[wendydarling]

Thanks LP, I'm hoping she can 'find her place with this', she's talked of Art Therapy (2 yrs training), she's spent her time since Sept on her art and last month bumped into an old family friend from when she was a babe, he's an amazing fine artist   I have one of his paintings above my fireplace, two lovers looking face to face. They're texting and plan to meet up. After 12 months she's clocked 4k followers on twitter, they support each other on bad and good days, validate each other, they're not alone. She's promoting DBT, articles etc - out there learning a lot. Twitter is one of her coping mechanisms, she's learnt when she needs to stand back and take a break.

This week she had her first therapy sessions since Sept (of the 4 that's she entitled to with NHS before end of this coming August - have to be taken within 12 months). I asked how it went for her, she talked for an hour constantly, the therapist did not get a lookin, sounds familiar to me, benign.

Here's the biggie - DD's wondering if she was assessed today she'd receive a diagnosis, 5 of 9.

I often wonder what DD's pain feels like, I mean really feels like emotionally and physically, yes I empathise, her life is.

I'm following my DD.

WDx

[wendydarling]

Faith   thank you, the going is here for sure, what ever one's situation work it through, look at the lessons and post how you are, we are here.

~There is hope, each time we change our approach, helps our loved ones do the same, empowering stuff. We lead our family.

So glad you found us Faith, and all newbies joining us.

WDx

[Merlot]

Hi wendydarling

Wow, that's fantastic news for you and your DD 

I can just read from your post that you are giving her all the space in the world to move herself forward without rescuing her but just being there and listening.  It's wonderful that she is committed to putting positive building blocks in place, even when there are setbacks.

This is inspiring for all of us who wonder if there is a better more positive life for our children and for us.

Thanks for sharing 

Merlot

[Feeling Better]

Hi WD

I’m so pleased for you and your D. The positivity comes shining through your post, it is an inspiration for all of us.

Thank you so much for sharing, it means a lot x

[MomMae]

Thank you for continuing to share your and your DD's journey, wendydarling!  So glad that your dd is continuing to do well and that is absolutely fantastic that she has been offered a work opportunity.  What a great chance to get her toes back into the water with people who understand... .what could be better?

  MM

[wendydarling]

Whoops, I've been a bit tied up in my own stuff, sorry for the dip in replying, I really appreciate your support, family here. No news on work yet, that's fine, my approach is health first, that's what works for us.

Catch this from my DD, "even after so much change and progression in my mental health, I’m still in need of answers for the confusion and emptiness that forever lingers with having emotional dysregulation. I just try to remind myself that searching for truth is part of the human condition".

I agree, we search for our truth and feels good way to go for me too.

WDx

Our objective is to better understand the struggles our child faces and to learn the skills to improve our relationship and provide a supportive environment and also improve on our own emotional responses, attitudes and effectiveness as a family leaders