feeling vulnerable

[poppy1972]

Hi,

I don't really know where to start. I've just been diagnosed with BPD and complex trauma(CPTSD) and I mistakenly thought it would be treated now we know what is going on. I work as a university lecturer and really need to see some stability in the way I manage life.

My psychologist has just told me to read the BPD for dummies book and another on CPTSD which I have and now I'm 10 times worse, I have suicidal thoughts constantly, I look around everywhere trying to find the nicest place to die, I can't drive at the minute as I know I'm unsafe behind the wheel, I have a million and one questions and I'm terrified that this is it forever.

I will be having treatment, I need emotional regulation therapy, followed by CAT, then EMDR, but all of it needs to be done by a clinical psychologist, he said it has to be someone with a lot if experience not new to the job, and because of this he'll only let me see 2 NHS colleagues. The wait is 14 months and I can't access any other help before that as he said my treatment plan is specific. 

What am I supposed to do with all these feelings and thoughts until then.

I'm really scared that I'll end up doing something that won't help and if I don't end up dead my family will have to deal with me knowing they weren't enough to stop me wanting to be dead.

That's really selfish I know and I do care for them greatly, I just don't want to live like this any longer, I'm not strong enough to carry on like this and I'm terrified every day that I'll make an unrecoverable mistake that will cost me my life or career and everyone will know I'm not normal. 

I'm sad

[PolarBearStare]

Hi Poppy

I'm so sorry to hear that you're struggling so much. It sounds like you are in a lot of pain and that you don't feel the support the NHS is offering meets your needs. I could imagine the thought of waiting so long might be really scary if you're not feeling safe.

It sounds like you have a lot of thoughts and feelings that you're struggling to cope with and I was really concerned to hear about your suicidal thoughts. It must be so hard to feel this way and I was really moved by how hard things are for you. I can also really sense how much you are thinking about the consequences of your actions on your family who you obviously really care about, but that it is hard to balance that with the emotional pain - that must be really tough.

I guess everyone needs to find what works for them, but I was in a very similar situation several years ago so I can suggest a few things. I ordered a Mindfulness book and a DBT book and worked through them myself - it helped to feel that I was doing something to help myself and they really helped to pull me out of my worst slump. You could also try peer support groups if you can find any locally or try getting in contact with your local Mind to find out if they offer any groups you could be part of. There's always the Samaritans, who can help if you just need someone to listen. Also have you considered just going to a private psychotherapist - they can offer compassionate rates if you can't afford it?

Hang in there and try to take a day at a time. I made a recovery from BPD and it is possible to find meaning in all the pain. I believe you can get through the 14 months.

Take care of yourself.

Lisa

[Kara.]

I agree with Polar Bear. Perhaps a private psychotherapist would be a good option if you could afford it. I would like to remind you that you have also just been diagnosed and I can imagine that you may be overwhelmed with the diagnosis itself and all the information that you are reading. In bpd, one fundamental thing is, I believe, to be patient. It really needs to be one step at a time and have faith. 

Be very gentle and compassionate with yourself in this difficult time. 

[poppy1972]

thank you for your kind replies.

I spoke with my psychotherapist about going private, he said that I'm looking at 2-4 years for all the therapy to cover everything I need, we costed the therapies and I'm looking at £14000 for it all and he says once I've started changing therapists is not a good idea as I'd have to go back through it all again.

I'm realising that I've overwhelmed myself going so fast reading he information and can only see the negatives about the diagnosis, I have an appointment with an occupational health nurse who I have worked with before and who the psychologist is happy for me to work with before as he is capable of doing some emotional regulation stuff which will act as pre work for the counselling without trying to "cure" me.

I've made the decision to stop finding information and trying to deal with this on my own and wait for my OHN to talk through this diagnosis and the impact it has. I've also accessed the crisis intervention team for the suicidal thoughts and spoken to the CMHT who have agreed to see me on a adhoc basis while waiting for therapy so I feel a little less abandoned

thanks again

poppy

[Me myself and I]

I am a new user and got diagnosed with bpd and ocd about 2 month ago I struggle with emotional regulation and thought like you I would have a psychiatrist and dbt. There is up to 2yr waiting list luckily I have a private counsellor who I pay I am lucky as she is amazing. So I understand how things are for you and where your coming from my thoughts are with you 

[poppy1972]

Gone from 0-200 in 10 secs. 

I spoke to my new GP on Thursday, I explained that I was upset about the BPD diagnosis, that I was having suicidal thoughts. She wasn't aware of this diagnosis as its only just been given. 

Today I have missed an urgent telephone call and email asking me to contact the occupational health department from a new job I applied for. I'm trying and failing miserably not to link the 2 negatively. I can't do anything until Monday now so I have 2 days to torment myself with the you knew it was too good to be true, you shouldn't have said anything, you've screwed this up just like everything else you do. Why can't you just keep quiet?  You would think you'd learn from your past mistakes but you can't, it's all your own fault, you don't deserve this job. You are stupid

By Monday I'll have talked myself into believing that I have lost this job before I've even started. This weekend is going to be a complete washout and I have no idea how to stop the train wreck.

How do you stop the thoughts and comeback to reality

[TRICKY70]

Hi,

I'm sorry to hear the position you're in and how you are feeling now. I share two of your diagnosis's and I recognise where you are completely. Four years ago after admitting myself overnight to hospital due to my suicidal thoughts I was referred to the NHS psychologists but there was a 9 month wait and I was given no help in between. I had a serious suicide attempt before then and was hospitalised for 4 months. So far so grim, but what I'd like to say is please don't feel there's no other way and 'this is it forever' as that's how I felt. As you may imagine it led to worse problems for me. I'm now back at work full time (as an accountant) and managing ok. For the first time in my life I have a sense of peace and contentment. I have good days and bad days but I manage and life is very worth living. It could so easily have not been this way. Getting through this is very achievable though it may not seem so. You sound like a compassionate person but it's really important that as a human being you realise no one deserves your compassion more than you do. In my experience with the NHS you have to keep pushing until they take notice. By this I don't mean act of self harm like I did ! but if you've got a good GP then tell them just how serious your thoughts have become and maybe he/she can push things along. In fact, I think they'll have a duty to do so. Medication may help (I don't know if you've been prescribed anything). MIND are a very helpful organisation and run various groups that may help. Please don't make the mistakes I did - if I can get through it anyone can x

[poppy1972]

Thanks,

I know I just need to get to Wednesday when my MHN get back and my appointment is due. Once I've been able to rationalise everything I'll be able to focus again but it's the weekend that'll be the problem.

No going out alone or in the car..need to keep safe. 

I'm overwhelmed by all the information I've read and most of it is so negative that it's confused me.

It just seems like there is no wayout of this condition no matter what I do, so why bother.

Thank you for your post though, it's good to hear that there are positives to all the work I'm trying to do. So glad it worked for you

Take care

[Kara.]

Poppy, you do sound overwhelmed. There are lot's of horrible things written about bpd and one really needs to read info from helpful websites. Bpd was seen as an untreatable condition in the past and therapists didn't know how to help people with bpd. They avoided bpds at all costs and stigma grew. Although one can still find some professionals who feel threatened by the diagnosis, most are trained in personality disorders. Furthermore, there was huge development in the therapies for bpd and today there are several specialized therapies. The understanding, interest and treatment is much much better today. 

If you read lots of negative things about bpd, make sure that you take them out of your head. Then, when you are ready, look for treatments and hopeful messages. There are lots of hopeful stuff as well as self help strategies that you can use meanwhile. But for now, really put all the negative stuff in the bin and think that although you do have that diagnosis, there are many different specialized treatments, many people have recovered and when you feel stronger then you will also look for ways to help yourself, while kicking stigma right in the bum.

If you want to have a look at information from websites that are not judgemental and critical ask. There is also a documentary made by Marsha Linehan, the creator of DBT, a specialized therapy for bpd, which is very good. Marsha is a psychologist and has been very important in helping bpds and came up with this treatment. Guess what, she had bpd herself. 

Keep strong. Your diagnosis is not the end. It's the beginning. Warm hug.

 

[TRICKY70]

Hi Poppy,

Just a quick line to say I had only read your initial post and not the more recent ones (was a bit dozy this morning!) so it's great to see that you've already taken further steps with the gp etc to get more support.

On the work front (you may well be aware of this already) it's very likely that you come under the protection of the Equality Act - formerly the Disability Discrimination Act. A very serious piece of legislation for employers. In regard to the new job, an employer can't ask about your health until they've offered you the job and if they withdraw the offer based on a health condition covered by the Act they can be in serious trouble ! Only in exceptional cases, say a truck driver who suffers from fits, would withdrawal of an offer be acceptable. ACAS can be very helpful if you want to find out more info.

My current employer had it in my contract that I had to tell HR the reason why I attended any doctors appointments. I laid it on the line to them and mentioned the Equality Act and they've given me a wide berth ever since. So try not to worry about the employment - you have a lot of protection there.

By the way : It's not your fault, you do deserve the job, and you don't sound stupid to me!

Very true what Kara said about the diagnosis being the beginning. When I finally accepted my diagnosis, it was a turning point for me as I finally could begin to make sense of why my life had always been so unmanageable. I was actually diagnosed eight years ago but denied it until the events I mentioned - you've had the strength to accept it even though its difficult. That's got to be a good sign. Recovery is an ongoing thing for me every day, but life is no longer the struggle it was. I'm no expert but it seems you're doing the right things right now. Try not to worry/think so much and keep things in the moment as much as you can (far easier said than done I know)

I hope you have a better week this week. 

Take it easy

 

 

 

 

 

 

[poppy1972]

Thank you for your common sense replies, I'm just getting the hang of these emotional handles. While I'm still struggling to accept the diagnosis, the book the psychologist told me to read (BPD for dummies) is a completely inappropriate book to recommend to someone to read as a first line book, it is completely negative and just emphasises all the potential problems a BPD person may have, but rather suggest they may have these it says you do, by the end of the book there is a few chapters about how to leave your BPD partner and break off friendships as we are toxic people to know.

There is a very short paragraph about how we can be nice and good and with the help of a therapist who we haven't managed to alienate in the process we may metamorphosis into a stable member of society, but generally it's all negative.

I'm now on the 3rd 're read to make sure I wasn't really wrong the first time round, I wasn't. There is some information in it that could be useful but it's well hidden in the negative stuff. 

So today I started looking at proper research, using some of the forum information alongside some clinical research books, life is looking slightly less scary but only just.

If you have access to any information I would appreciate the links.

I got in touch with my new job today and they have decided to speak to me rather than keep writing to my GP and occupational health doctor who has only seen me twice for an hour.

I'm meeting with my MHN on Wednesday and we've agreed to go over what to say and not say in my interview and how not to sabotage my self so I end up losing the job.

Do you have any advice about whether it is worth while giving them the diagnosis as I'll need time off for therapy appointments once a fortnight for the next year and then for the CAT and EMDR or do you think the GP's information about emotional deregulation and complex trauma cuts it?

Any advice welcome, from a rather stressed out Poppy

Thanks

 

 

[TRICKY70]

Hi Poppy,

My GP recommended Borderline Personality Disorder for Dummies too. I didn't really read it as I was not up to the self help book route at the time or reading much at all. I'm glad I didn't now.

There is a lot of misunderstanding about BPD and I'd suggest you don't identify with all the negative stuff as we are all different. Being diagnosed BPD does not mean you display all of the traits. I've never been a nasty piece of work and I'm sure you're not either. I developed BPD because of things that were done to me that I didn't deserve so a bit of compassion for myself (though not self pity) helps.

With regard to further reading, I've heard that the books by Marsha Lineham are very good. She created DBT which is thought to be the most effective therapy - and she suffered from BPD herself so she must come at it from a non prejudicial and understanding position.

My path was that, after only getting group therapy with a group of men with various issues, for a year, I was getting desperate. I researched DBT but couldn't find any providers of it. Looking into  DBT I found out about Mindfulness and the links of both therapies to Zen etc. I paid to go on a mindfulness course and found, through practicing what I'd been taught and reading books on Zen etc for the first time I started to have a shift in how I viewed things and became more able to detach from my intrusive thoughts and the powerful negative emotions they created. I looked into Buddhism further for a while and practiced meditation with various traditions but soon felt uncomfortable with what I saw as organised religion (I don't think that's what was taught originally anyhow). So, nowadays, I practice mindfulness techniques and still read books on 'rational' Buddhism (eg non religious) really because I find it interesting. I haven't 'found' religion or had a 'spiritual awakening' or any such freaky nonsense and am an atheist in case alarm bells are ringing !

But yes, I'd recommend DBT, Mindfulness and Marsha Lineham. A healthy dose of Sodium Valproate each night seems to help as well for me, I should add.

With regard to the new job. What your new employer should be looking at is what's called 'reasonable adjustments' which an employer are required to make under the Equality Act. So they shouldn't be looking at names of diagnosis's but how they impact on you at work and any adjustments they can make in order to help you. It seems to me they're aware of their responsibilities. The people you are meeting are not medically trained so you shouldn't feel you have to give names of disorders which they would not understand. You've already given permission for their medical professionals to speak to yours so you've done all that can be expected of you. Contacting ACAS and the Equality & Human Rights Commission may help put your mind at ease as to your rights and the employer's responsiblities.

Please remember these are just my opinions which are limited to my own experience. I'm no expert! I think that your MHN will be able to give you much better advice as he/she will have seen many people in your situation. 

Hope it goes well Poppy

 

[TRICKY70]

Hi,

Just a quick further thought re the work meeting. The only personality disorders not covered by the Equality Act are anti social personailty disorders. BPD and your other diagnosis's don't fall under this category. The only way I think they could refuse to employ you would be if you indicated you were a threat to the physical or mental well being of staff or customers. Which I'm sure your not. Your MHN nurse should be of great help in preparing for this. It' will be daunting but I reckon you'll be fine. Good luck !

[poppy1972]

I just want to say thank you for your support over the past weeks, I had my OH appointment this morning, While I didn't disclose the BPD diagnosis I went with the one they have on file which is emotional dysregulation compounded by CPTSD, I was able to describe the symptoms to the OH doctor who I think understood what I was trying not to say.

The outcome was really positive, I have a dedicated parking space ( I have chronic pain and Fibromyalgia) I will be able to have the work station equipment I need, and more importantly dedicated time off to continue with my MHN every fortnight until the CAT and EMDR that I'm having are in place, currently 12 month wait, and then dedicated time off for those.

She wrote my HR letter while I was there and my contract has been completed, I'm going in on Wednesday to sign it and will start as a full time permanent lecturer in nursing at the end of September.

In other news I showed my MHN the BPD for dummies book and he was furious, it was nice to see that I wasn't over reacting.

The first paragraph in the book (paraphrased) goes   A few years ago on TV there was a programme called the worst people in the world, the host would show some videos and then publically deride them. Well a few years ago therapists would view patients with BPD as the worst patients in the world.....

This is followed up a few paragraphs later with BPD patients are like Longfellows little giri...

There was a little girl, who had a little curl, right in the middle of her forehead,

When she was good, she was very very good, when she was bad she was horrid.

 

The rest of the book didn't get much better, and the MHN nurse says to throw it away and forget about it, it is disgraceful, more so as it's supposed to be written by practicing clinicians,

Anyway, feeling a little more positive tonight

thanks again

Poppy

[TRICKY70]

Hi Poppy,

Ah, see? reasonable adjustments and the Equality Act! I'm so pleased it went well for you. I had a feeling it would though I could understand your worry as I'd been there myself. I felt a sense of relief after telling my employers. If anyone wants to judge me on my mental health problems then that's their problem and I feel sorry for them that they see the world that way. It can't be great having that horrible mindset.

Same mindset that's in that BPD for Dummies book. We seem to be way behind in this country. I have a friend who lived for twenty years in Germany and experienced MH problems there. He's back in England and is astounded by what he see's on telly, on comedy quiz shows, mocking people with MH problems, casual use of the word nutter etc. Over there, like in America, MH is thought of as no different to physical health. Loads of people have therapy and openly talk about it.

Imagine if they wrote a 'for dummies' book about any other minority group that was so demeaning...

I'm a newbie here myself and I'm glad if I was able to help in some way. It's helped me too and thanks for responding to let me know your experience.

Hope all goes great in your new job. Don't rush, small steps, keep doing what your doing and I reckon you'll be fine mate.

Oh yeah, also (I probably over analyse what I say!)  I went down (briefly) the Buddhism route because I found Mindfulness helpful but a little lightweight. As I couldn't get DBT help I explored Zen. In retrospect, I'd recommend looking into DBT books and therapy as I think its all there and more relevant for BPD.

Look after yourself and have a great weekend.

[poppy1972]

Just to tie this part of the thread up.

Today I became a fully fledged member of university academia when I signed my contract. I will hang up my nursing career shoes on the 28th September.

I'm quietly contented and very happy.

[poppy1972]

So this is what I now know us a BPD swing, I handed my notice in today, I left the trust I work in on a secondment(loan) to the university I currently lecture in 2 years ago, I've not been back to nursing duties for 12 month's today. I'm never going to be a nurse again, my identity has disappeared, when people ask me what I do I tell them I'm a lecturer by job but a nurse by profession and a lot of my identity is tied into my nursing career. I reached the top of my clinical career leaving as a ward manager. I loved most of what I did and its gutting to realise I'll never do it again. I'm sat here devastated by this even though I knew it would happen, I'm finding it hard to accept.

I know I can't nurse again, physically I'm not good and my pain levels mean it would be difficult to complete a full shift, that why I studied for my education qualifications so I knew there was another career for me to go into, and I've loved these last 2 years and I know once I'm there the regret will go.

Yesterday I was rather happy and today I'm rather miserable and I'm thinking daft things again, like you'll mess it up, the first year is probationary so they can dismiss me without notice. Where as at the minute I have a lot if protection, I may lose access to my MHN as he belongs to the trust and even though I can pay to see him his trust patients take priorities.

I'm stupidly contemplating throwing the towel in just so I don't have to change again.

Tell me life is going to get better, I cannot cope much longer with these stupid swings. The worst thing is I can see the real answer, I just can't believe it will happen for me.

I think they are going waken up and realise I'm not the best person for this job, I'm just a good actress. In reality I'm sh*t scared.

 

[TRICKY70]

Hi Poppy,

Sorry to hear you've taken a down swing. I hadn't checked in for a few days - hopefully you're feeling a bit better now.

Firstly, with the probationary period. They don't actually mean anything in employment law though employees can't claim unfair dismissal in their first two years of employment. However, you have the protection of the Equality Act from day one.

I have those swings too. I'm often convincing myself that I'm going to be fired or I can't do the job. However, I'm more able to realise these days that it's all in my mind and step back from it  and not get overwhelmed by those thoughts. I call them my 'chicken licken' days - you know - the sky's going to fall down on my head ! But it never does..

There's a saying : 'Your worst enemy cannot harm you as much as your own thoughts unguarded' which is very apt for those with BPD I think. Our thoughts will trip us up. I guess the trick is realising you are not your thoughts and to step back and recognise them just as the incessant chatter of the mind! If I have some dark thought I try to look at it and think - no I don't agree with that - just like if you overheard someone saying something disagreeable next to you on the train, for example. DBT and Mindfulness are based on this concept and explain it far better than I'm able to ..

It seems that physically you've had to move on to the new career and you must have done very well to study and get the new job. There's no reason to think that you didn't deserve to get the new role. Try not to be so hard on yourself Poppy. Things WILL get better.

I'd really recommend reading some books on DBT or Mindfulness. Or doing a Mindfulness course if you are able.

Take care, hope you're feeling better soon.