Tag: treatment

Changes ahead

Changes ahead

I’m going to make some big changes to this blog over the next week.

It has been many weeks since I’ve posted regularly. My husband has been coming through major surgery for cancer. Another family member has been through severe trauma. We have been struggling through a heavy load of financial issues since last autumn. My PTSD symptoms are worse. I’m not coping with day to day basics as I want and expect myself to. I could go on.

However a big reason I want to make changes in this blog is that my posts have been too sporadic and too distressed and distressing. I don’t want this site to be just me venting and screaming about how hurt I am. That doesn’t help anyone.

Yes, I want to be totally honest in what I post. Totally real. I don’t want to turn the blog into a falsely cheerful, superficially positive story. After all I’m talking about very present and painful trauma, illnesses and struggles. I am not going to pretend that I have all the answers or that I’m “over it” and nothing can touch me.

Yet I am more than the damage done to me and the hurt of every day. I want to try to find that. I want to write about that. I want to be thankful for all of me and all of every day. Also, I want to incorporate more focus on what helps me cope and even heal.

I want to have a regular posting schedule and more defined sections on this site so I can share what’s happening in my life week to week, but also share information about what helps me and may help readers, answer readers’ questions, post in response to reflection about what’s happened to me in the past, how I tried to cope and why. I want this blog to be helpful to readers, partly through reflecting what living with PTSD and borderline personality disorder is like, partly through sharing resources and information.

Big changes are coming up. Please watch this space! Thank you!

Ginny xxx

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A much bigger loss than they realise

When I signed up to the programme of treatment I am in at the moment, it was to include weekly group MBT therapy, fortnightly individual therapy, monthly care coordination and support available from a duty team.

With no warning, monthly care coordination has been stopped and changed to quarterly. Having expected to see my care coordinator yesterday as we’d previously booked, this was cancelled and my next care coordination is not to be until the end of September, which will be about 4 months since my last appointment.

I could write a lot about how badly the actual communication of this decision has been handled. Actually I did but I deleted it. It probably doesn’t do anyone any good, not me or the service or anyone else, to shoot off into an angry tirade. I’ve been trying to process this through since we (ie all of us in the therapy programme) got letters telling us a few days ago. My emotions are pretty out of control and shooting to extremes at the moment independent of this which is making things harder – ironically, partly because there is so much going on all across my life and I can’t hold it all together; I could have really done with some help from my care coordinator. I’m trying not to just rant in anger here. However, I do think that some of my feelings are shared by other people in the programme and I do think this reduction in appointments is a much greater loss than the hospital realise. There is a huge gap in care here and it’s getting wider.

We weren’t involved in the decision. We were informed afterwards in an impersonal letter. We were informed that this would be best for us. There was nothing personal about the decision. Surely everyone’s needs in terms of care co-ordination may be different, at different times in their therapy, according to what’s going on in therapy, their health across the board, and all areas of their life? The approach being taken isn’t responsive. It’s just a blanket decision.

My views are certainly being influenced by what I observed and experienced when I worked in mental health services in the same mental health trust in which I’m now treated, but I wonder if the source of this reduction in appointments is actually largely to do with funding cuts and staff shortages? Conversations I’ve had with my care coordinator have given me more than an inkling that my suspicion is correct. If this is so, it would have hurt a lot less if this explanation had been given plainly, rather than it being couched in claims that the service think it’s better for us to have less coordination of our care.

Leaving this aside, nobody actually discussed the matter with us whilst deciding what would be best for us. We didn’t get to give any input about why care coordination is important for us, the help we need, the effect this withdrawal of support would have, what our needs are and how they might best be met. We committed to the therapy programme expecting one thing and now this has been changed. We’re expected to stick with the programme and commit to it but they are free to change it how they choose. This is by no means the first time this has happened and what we have trusted in has been changed or taken away. Support we desperately needed, which was insufficient anyway, has now been withdrawn further.

All these things combine to make us feel hurt and powerless and unheard by those we should be able to trust and undeserving of support. I posted yesterday about how when I discussed the changes on the phone with my care coordinator (after I’d chased several times for any explanation of how the decision was made and what’s happening in practice with my appointments going forward) he told me the service thinks this is the best way to challenge us to be more independent, and how much this hurt and how little the service we should be able to trust actually appreciate what we are facing.

Separate from the emotions this brought up, the withdrawal of these appointments doesn’t just affect the appointments themselves; by the very nature of what care coordination is meant to do, it will have an impact on our wellbeing across the board and I think this is where the proverbial baby well and truly has been thrown out with the bath water. It seems the clinicians who have made this decision do not realise what a loss this will incur.

First, on an immediate practical note, it will have a knock on effect on our therapy appointments. We have been told that the clinicians have decided it is most appropriate for us to get help in therapy appointments rather than care coordination. The focus of a care coordination appointment is utterly different from a mentalisation-based therapy appointment . Therapy appointments focus on emotions and interpersonal situations, looking in depth at particular relationships and specific interactions, our emotions and thoughts and our understanding of what is in our own and each others’ minds. It’s not so much about events and information and our circumstances as focussing in depth on our emotional experience and thought patterns. This is totally different from what is covered in care coordination – such as building a care plan, reviewing mental and physical health, looking at input that may be needed from other health professionals or support workers, looking at social and financial problems and stability, monitoring risk and safety issues, communicating with the range of professionals and others involved in someone’s care… the list goes on. If this is now to be squashed into the therapy appointments, either the time for therapeutic work will be greatly reduced or the problems we needed care coordination for won’t be addressed.

This is all the more important since the length of time for which one can be seen in the service is now strictly limited. The service was set up to be a lifelong service, recognising the fact that we may likely need help outside of particular therapy programmes across many years. Now this has been stopped and after we have completed a particular therapy course we are discharged whether or not we are coping or safe or recovered. When time is limited and so soon we will find ourselves alone again or at least without specialist support, whatever state we are in, it’s all the more important that whilst we are with the service we can get help pulled together across all the areas of our life that our mental health affects and that affect our mental health.

And these areas are broad.  Several of us in my therapy group, myself included, have multiple mental and physical health diagnoses. Most of us have many unmet needs at any one time.  Some of this is because of rules that you can only be seen in one service at one time. I’ve posted before on how unfair that can feel – for me one thing this rule means is I’m not allowed any help with my PTSD and trauma following the abuse I’ve been through, because I’m being seen in the PD Service. I know other people who were forced to choose between being treated for their life threatening eating disorder or their personality disorder. Multiple mental health diagnoses are often closely related but I, and I’m sure many others, have had big difficulties trying to find the way through the care and treatments they need and I’m regularly promised help that is then the next minute taken away. Someone needs to pull all this together and make sure communication happens and that help promised is actually delivered. It is too hard to do this on your own when you’re seriously ill and all too often you are bounced between different services, each telling you that another service is meeting your needs when actually nobody is.

Physical and mental ill health tend to cause disturbance and instability to a lot more than health. Just a few examples from my own experience – and all these are shared by other members of my therapy group – are losing your job, being made homeless or having to move from your secure home, having nowhere stable to live, having no money to meet essential expenses of food and rent and bills, falling into debt, trying to navigate the system to claim sickness benefits or help with housing costs whilst working part time – and being met by mistakes and delays at every turn and waiting weeks on end to receive any money, consequent trouble with utility companies, landlords, over or under payment of tax and Benefits, filling out form after form, having less and less contact with friends and having no resources (financial, or in terms of emotional strength) to keep in touch with the little positive things that can keep you well, relationship breakdowns, addiction, crises, losing control and ending up in trouble with the police or other involvement from emergency services… I could go on and on.

It just isn’t possible to sort out all of these things on your own especially when you’re struggling with the daily pain of the BPD itself. You desperately need someone to get you access to help and guidance, to be familiar at least to some extent with the systems you’re struggling through and to know what help is available and refer you there. This help has never come, for me, from the PD Service, and with so little care coordinator input going forward, it’ll be even scarcer.

Yes, a lot of these things are parts of everyday adult life but the fact is by the time most of us eventually get seen in a specialist service like mine, we have struggled without the help we need for years upon years and are very near the end of the road. (Potentially, very near ending our lives, or already having reached that point because there is nothing but pain, dark, utterly spent, utterly trapped, self disgust, I could go on…) Yes, we have to be able to function independently. But we are silently screaming how right now we can’t. We need help. We desperately need to be heard that we need help. Every time we have tried the very hardest we can and there’s yet another loss, obstacle, more and more piled on us, our risk increases and we are less and less able to be independent and more and more locked into our compulsions to overdose and self harm and try to numb and control the utter desperation and silence the painful scream for help inside us. If someone hears us, guides us, gets an understanding of what is happening across our lives, pulls the pieces together and gives some continuity, as our care coordinator could, then we can start to gain strength and start to find some kind of stability that might eventually allow us to heal.

I am incredibly fortunate that I have a support worker (from a local social service, not from the NHS) who is helping me with so many things that I’d have hoped my care coordinator and/or support workers from the PD Service would have done. The response from the PD Service was to brush me off saying everyone has to deal with these things and I did not qualify for any help and one appointment with a care worker who did not know anything about most of the areas in which I needed help. Thanks to my current support worker, I have not been evicted by my landlord, I have been helped to fill in the complex application forms for disability benefits, I have had support to go to assessment appointments, I have had help learning to budget, I have been able to access the correct advice and information from all the services involved (housing benefits, the council, the Jobcentre, disability services etc), I have someone on my side who understands the difficulty I’m going through at the moment in the police investigation into my abuser, and I have some social support which will help me use my time constructively to keep getting better and eventually learn how to get back into work.

In no way did the lack of recognition, lack of coordination and lack of support I received from the PD Service make me better or more able to function. In no way has having a support worker made me less independent or worse. I am now self harming much less and have not overdosed for weeks. I’m able gradually to do a little bit more and then more, because I have some sense of stability and safety and someone who believes me. With his support I’m not alone going through the things that distressed me to the extent that I couldn’t cope and could only hurt myself.

This support is desperately needed. It is very sad that it is so hard to find. Given that the therapy programme is so good, and I know it is such a privilege to be able to undertake it, it is sad that the support towards staying safe and being well and stable, is so lacking. It is much harder to grow and make use of the therapy from a place where you don’t feel safe or heard.

Perhaps I’m overreacting. Perhaps I’ve had an unusually bad experience with my care coordinator or when I’ve been in crisis. Perhaps I’m incredibly dependent. (Well, I think I definitely am.) Probably I should focus more on the fact I have the support I do. I know many services have much less support available. It just seems to me like a big and widening gap and that things could so easily be different.

If I recover enough to ever work or volunteer in this field, I’d like to work on trying to bring together patients’ access to the support that’s out there and bridge the gap of all the unmet needs that are stopping us from having a stable life whilst we’re working through our therapy programmes. I’m sure this would increase people’s security in their recovery.

Ginny xxx

To blog anonymously or not…

When I first started this blog, I was certain that I was going to keep it anonymous. By “anonymous” I mean, for example,  I don’t use my full name, I avoid posting anything that would indicate the town I live in and I do not post photos of myself or my loved ones. Recently, I’ve been wondering whether I might change my approach slightly, for instance, disclosing a little more about me, or sharing photos sometimes, or no longer refraining from talking about local groups, services, activities etc that might give away where I live.

It’s a hard decision. I was talking about it with my friend S who suggested “Why don’t you ask other bloggers what they think?” I thought that was a great idea.

So, I’d like to ask you a question: what do you think about blogging anonymously versus revealing personal details? Was this a difficult issue for you? What led you to choose how much you reveal and whether you write anonymously? If you started your blog anonymously but later decided to share more about yourself, or vice versa, what led you to that decision? If you’d like to make any comments I’d be very grateful. Thank you.

I’ll share a few of my own thoughts on the decision I’m trying to make.

Ironically, it’s partly because some of what I post here about my emotions, experiences and relationships is so very personal that I refrain from sharing personally identifiable information. Many of the experiences I talk about are very painful and intimate, especially those from my childhood. If someone I know as an acquaintance or colleague (rather than a very close friend) came across my blog and learned what had happened to me then I might feel really uncomfortable to say the least. At the start of my blogging, anonymity let me write more freely. Also, I didn’t know what kind of reaction I might meet with. Allowing myself to be identified could have made me vulnerable if I encountered unpleasant or harassing “followers”. In fact this hasn’t happened at all; since I started my blog I’ve been very blessed to have caring and supportive visitors to my pages who have become friends and that’s a huge gift.  THANK YOU! It’s now partly because you have become friends that I’d feel comfortable sharing, and indeed would like to share, a little bit more.

However I also know that if I were to be identified my blog might affect not only me but my friends, family and the professionals who care for me.

I’ve written about relationships breaking down and hurt I feel. I’ve shared sensitive experiences that involved others, such as my childhood abuse and relationships in my family when I was growing up. When I mention someone else I never give their name, only an initial sometimes, but if I were to be identified through my blog by someone who knows me (say, through work or a friend of a friend) then other people I’ve mentioned in my posts potentially are more likely to be identifiable too. It’s a small world, as the saying goes, and I don’t have that many friends! 😉 My friends and family may not want to be identified, or they may be upset. The anonymity of the internet does not give me the right to be horrible about people and I try hard not to write personal things about other people or things I wouldn’t say to the person directly. However I’m inevitably only writing my own experience and perception. In another person’s view it may not be balanced. On the flip side of this, I try to write positive things and express gratitude about the good friends I do have in my life and it would be nice to share more of that.

As well as considering my friends, I have to consider the hospital and my doctors and the therapy programme I attend. There aren’t many specific personality disorder services in the UK and if I say where I live, which hospital I attend will likely become clear to anyone else vaguely local with knowledge of PD. I might worry about anyone making a judgment about the hospital or therapy on the basis of what I write. It’s just me, after all.

Equally there is a lot about the support I get that is great and I would like to share this to help others. Having experienced at least 15 years of mental health issues, slowly I’ve come across sources of support and services that can really really help, some in times of crisis and some day to day. A lot of them are not easy to find. I’d love to write about them and how they’ve helped me, in case this in turn helps others and because I think they deserve recognition. So far I’ve held back so as to avoid revealing my location. Perhaps that is over-cautious of me.

You get the picture that I’m in two minds about this at the moment!

Ginny xxx

Op tomorrow – and a short silence

Here we are. It’s my op tomorrow.

Surprisingly for me, until I left work today I was not feeling nervous. Then my colleagues who knew about it were all so supportive wishing me well. ..and ah yes up popped the anxiety again. Hallo there 😉

Tonight I have several things to do – check my transport for tomorrow, to see if there’s an early enough bus or if I need to get a taxi, get some groceries as I may not be able to get out for a few days after the op, text my friend who is very kindly bringing me home on Friday, call Dad, tidy up at home, pack, get myself ready….eek. But plenty to think about which is probably a good thing!

Thank you so much for your support, messages, wishes, prayers and caring. It really means a lot at the moment. I never expected to find so much friendship through blogging and I’m hugely thankful.

I imagine I won’t be able to post for a few days whilst I’m recovering. I’m sorry in advance for the silence. You are in my grateful prayers and I’ll be back in touch as soon as I can.

Ginny xxx

Scared I’ll lose it again

Tomorrow I have my usual weekly group therapy, then I have my monthly care coordination appointment (it’s supposed to be monthly but has been canceled more often than not since October last year). It’s challenging at the best of times when this appointment comes round, especially when it closely follows therapy group on the same day, which is draining in itself.

I’m very worried about the care coordination tomorrow. Last month I was really upset and desperate in the appointment, didn’t get the help I felt I needed to stay safe and left wanting to end my life and overdosed. There was a complete lack of understanding between me and my care coordinator.

I’m scared something similar may happen. I’m scared that I might lose it like I did a couple of weeks ago. I’m so so ashamed of that and I feel dread when I think of it. I’m scared I won’t be able to control what I do and it’ll happen again because I’m so unstable right now, flicking into distress and hurt and anger so quickly.

Also, I’m scared because there are really difficult things I want and need to say. I can’t say everything’s good and fine or that I’ve made progress; I can’t say I think I have the support I need because there are massive issues and have been huge failures in communication and so many things promised have not been acted on. I now operate by expecting nothing from the service and expecting whatever is arranged not to happen. It’s “safer” that way. It doesn’t open me up with hope and trust then twist the knife with another let down or betrayal. It means I don’t ask for help either.

I need to communicate these things. I never do, usually, but if I don’t there’s no going forward. So I’m going to try to say at least some of them and write a letter as well in the next few days.

I do not know how to stay calm whilst I do it. How do you stop yourself losing it? How do you control the aftermath of feelings without harming yourself? How do you keep your emotions level when things that are really deep hurts to you, are unanswered or ignored?

I’d be seriously thankful for any suggestions!

Ginny xxx

Some “good” gynae news

This morning I’ve been feeling more encouraged after a positive outcome at the gynaecology clinic. (Apologies gents who may wish to read no further 🙂 !) I know this is off my usual topics but I thought I’d share some good news.

I’ve had extremely painful periods as long as I can remember, especially over the past 10 years, very  heavy and painful. I’ve been in A&E 3 times in the last year or so because of it, have low iron levels, distressing bladder symptoms too which are apparently connected as the endometriosis has grown across the bladder; all in all it is having a big impact on my life. This year I’ve had to take days off work because of it.

Today I finally had an appointment with a specialist at the hospital. It has taken so long to get a referral, after trying several different medications and having scans. She was very compassionate and thorough. I am going to have an MRI scan of my womb and then a minor operation partly to investigate, partly to remove endometriosis  (hopefully – if it’s too bad they won’t be able to do it at the same time and would need to operate again), and to insert a coil (I didn’t really want this but it may be one of the only options).

I’m so grateful that at long last the problem is being investigated and treated rather than just trying different tablets which all affect your hormones a lot, which “should” help because it’s “probably” this or that, without really knowing what is going on. It has taken years to get here but now I’m feeling optimistic there will be some answers at least, even if the operation doesn’t get rid of the problem straight away.

This has to be the first time for a while where it feels as if things are moving in the right direction!

Ginny xxx

The 1000th last straw

[TRIGGER warning for mention of self harm, overdose and suicidal thoughts, and childhood sexual abuse;  and for anger, i am really angry and hurt writing this.  I am not meaning people to worry about me. When i say I’ve given up i mean on therapy and the doctors and everyone i trusted, not that I’m immediately suicidal.]

I am so far beyond angry. Hurting. They can decide I don’t get help. But it does come to a point I can’t just keep going one day more and being told the bad things are temporary.

In group and after I desperately needed to talk about the abuse and trauma and the decision I’ve now got to make whether to make a full statement to the police. I needed help when I told them I was really high, right on the edge, really unstable, not safe. Nobody heard.

I’d dared to ask a friend for help and to help me talk through some of what I have to decide about the police. She’s cancelled and changed arrangements so many times we’ve had to meet. I doubt she really wants to anymore. She keeps meetings to the most difficult and shortest times. She knows I’m ill, she knows I’m desperate, she surely knows how difficult it is to talk about abuse! She agreed to meet in the middle of the day at her work. Obviously I needed to talk in private but if that was all the time she had then I was thankful for it. I was at my wits end today after group. She changed the time and place back and forth through the morning today. She knows this puts me right on edge if I have no idea what’s happening. She told me she only had 30 minutes, then that she had work to do and hadn’t finished, then couldn’t I wait an hour and a half later, then asking where I was, 2 hours earlier,  when she knew I was still at my hospital appointment. When I finally pinned her down to a time she still came 20 minutes late without even letting me know and we had to meet in a crowded cafe where I obviously couldn’t talk about a thing – what did she expect me to do?! “How’s your cappuccino? Oh yes and by the way, I’m not quite sure how I’m going to cope when I tell the police about my mother sticking things up me when I was 7, any thoughts?” I don’t think so!

Then she told me I ask too much, it would be impossible to do what I ask (really? Is it so very hard to agree to meet a friend, stick to the arrangement and turn up?) And she doesn’t believe i wanted to meet in private because I thanked her for agreeing to meet in the middle of the day (well just because I thanked her and was grateful doesn’t mean I was happy or it was what I needed, I was just grateful for any help – or what I thought was help). She said she didn’t know we needed to meet in private (really? Is she that stupid she doesn’t know if you have to talk about abuse you won’t do it in the middle of a cafe? I don’t think so).

I was in bits and in so much pain as well  – and yet again the last hope of getting help or to talk to anyone was snatched away. It’s not just today. It’s every single time. I’ve had it now after this is just repeated – every one i should be able to trust,  every place i should get help. They don’t hear. They don’t believe me. They don’t help. It’s some sick joke or someone’s plan to find out when I break, to laugh at me, to test if I want help enough. Well I’m screaming and nobody can hear. I can’t scream louder. They can choose to keep up this game. Well I guess they’ve won. I can’t shout louder. I can’t make them believe. I can’t make it so that I deserve or am allowed help. I can stop trying anymore because it does just hurt too much. That one’s down to me. It’s not really a choice because it simply now is too painful. But I can choose not to let anyone near me again so they can’t trick me, so they can’t decide to keep a distance because I’m not allowed help and cut me down again because I’d just started to trust and go forward believing they’d be there, so they can’t disappear and show me how they don’t really want me around and it isn’t a friendship and they won’t be there.

(Funny. She’ll threaten to call an ambulance – and if I do go to a&e I just talk to someone then get bounced back out after a few hours and I’m alone again – but she won’t come to see me when I’m not safe, understand how hard it is, sit with me when I’m terrified, come to see me when I was in hospital – every time I was in I was the only person on the ward who didn’t get a single visitor -or hug me when I’m crying. Why is it so hard to do any of that? The doctors don’t care and don’t help me and the only friend I have nearby doesn’t want me around and says go to the emergency services. So I’m not allowed medical help and not allowed friends.)

I’m not allowed any help. I need a friend and I need someone with me and I need to trust someone but every single thing I trust gets taken. It’s not just today it’s every time and I’ve had enough. Oh, you must keep going to work, they say. You’ll feel worse if you have nothing to do. No, I won’t. All I want is it to stop. I don’t want to go out. I want to sleep. I want drugs to stop me feeling.

Oh it won’t help you if you have anyone with you it won’t help you get better you have to be independent. Why is it for her to decide what I need? She’s not my doctor! She doesn’t know what it’s like! I need help. I need someone with me. I want a friend. I want someone to help me. I want someone to care. I want someone to be there when I can’t cope. Not only when I can say everything is fine. Not only when it suits them. Not only because they’ve decided I have to learn to be independent. I’ve always been independent. Nobody has ever been there when I needed them. Now I Can’t cope anymore. It’s even more cruel that every time I’m most desperate I have to be deceived into thinking someone’s there then left alone.

If you’re friends with someone, if you care for them, you are there when they need help. You don’t decide what they need or that something else is best for them or they have to learn something. You don’t see them sometimes then walk off when they’re ill. You don’t constantly change every arrangement. You don’t only allow them in certain situations and certain parts of your life. If they need you you’re there for them. If they’re sick you help them and care for them. You don’t just disappear because it isn’t convenient. That’s just utterly basic friendship and actually basic morality. I’d do it and do do it for anyone.

Is it really so terribly much to ask? Every other person in therapy has family, a carer or a spouse with them. I’m the only person who doesn’t, who lives totally alone. Is it really so terribly awful to want someone to be with me when I’m in crisis, to hug me when I’ve been crying for hours, someone to stick to a commitment, someone to be a friend, someone to help me when I’m cutting as soon as I’m alone, when I’m terrified of the hallucinations?

And the doctors know and they don’t care. They don’t help me. My friend says call them if I’m not safe. She says persist. I’ve been persisting for years. I’ve been accepting nobody wants me. I’ve told them in not safe. I’ve told them I’m cutting and overdosing and when I was planning to end it. They didn’t help me. I don’t want some stupid phone number for a few minutes of so called support. That doesn’t keep me safe or get me help or a friend or anyone with me. I’m on my own again. Left to just go back to the same cutting and overdosing. There’s no other way to cope. They tell me just keep going is temporary. I don’t care if it’s temporary. I can’t right now.

After years of making sure never to say what I needed and always to do weekday I’m meant to, I’ve had it. I’m a disgusting selfish b*tch and a baby and I’m screaming and I need help now and nobody can hear me. I’m not allowed help and I know I’m not but every time it’s proved the kick hurts even harder. I know it’s selfish and disgusting but actually the need and the hurt has taken over. Nobody wants me. Nobody wants me really, not what’s really me.

 

 

Another year ended (Perhaps, just for a minute, I can believe.)

Another year ended (Perhaps, just for a minute, I can believe.)

Today in my church we celebrate the Feast of Christ the King, the last Sunday of the church calendar year. Next Sunday will be the First Sunday of Advent.

Time passes too quickly.

It’s easy to regret, at this time of year.

Advent is a time of joyful waiting and hope in darkness – for me in my faith, preparing to receive in our heart’s God’s gift of love, and placing all our hope in a God who comes into our darkness just as He came as a helpless little baby to Bethlehem that first Christmas. He does not fear to enter our need, confusion and darkness and we need not fear our darkness and confusion because He delights to come to us.

This time of year is one of heightened scary emotions too. It can feel like being pulled back into too intense memories of the past, of past events and tensions, past failures to make things what I should have. We talked about the emotion of regret in my therapy group and I said, trying to give hope to someone else who said she felt regret, that the idea of regret implies perhaps that we know some way in which we would have liked things to have been different. Perhaps we can build on that.

Right now I don’t think I know how to make things different. Looking back this year or so has been terrible on the face of it with loss after loss. Loss of two jobs. Loss of a very close friend (former partner) when our relationship finally was dashed away completely. Leaving two temporary homes. Loss of the ability to carry on or hold it together. Loss of my job and loss of the ability to work full time; with it loss of stability, colleagues, confidence to be able to do anything at all good. I have been in hospital three times for a length of time as an inpatient and at least twice more for a period of hours when I was suicidal.

There is constant news of so much suffering, fear and terror (in all senses of the word) in the world and more and more hurt that cannot be stemmed. What do we do faced with this? What can we do that is good? What is going to win out in the end? I hurt so much too for people close to me who are ill or struggling or suffering and feel their pain to a point I cannot breathe. I wish I could be any good to them.

Is my grip on reality slipping further and further away? The voices, seeing things, explosive emotions, longing not to be alone…. trying to keep going seems more of a fake and more of an act, more exhausting and harder to keep up. Asking for help fills me with fears of unworthiness, having lied, being a fraud and my intense inner evil that I can’t purge.

Yet a couple of people close to me have said that they see a change in me and something getting better that wasn’t there before. I cannot see it yet but they can.

I have a flat of “my own” rather than just one room as a lodger. I can make it home.

I have discovered friends who do not abandon me even when to myself I am totally repulsive and when I cannot believe that anyone would choose me or want to be around me and when I feel I can be no good to them.

I got to work with someone I truly trusted and respected and learnt from him, not only specific skills and knowledge, but how to be fair and calm and how to give generously and work always in a dedicated manner, yet still keeping boundaries and structure and still holding on to a sense of one’s worth when everything around is screaming the opposite and deriding you. I cannot in any way hold that myself yet, but I watched and learnt and it stays with me somewhere. I hope we may stay in touch.

The Lord has treated me tenderly and shown me He is with me and in a moment of the most impossible despairing distress, showed me that at the deepest point and longing of our heart, there is love and there is Jesus, and just for a few minutes I could believe.

I have a therapist. I have one to one and group therapy. I can go to a support group sometimes. I can ask for help when I need it from a specialist PD service, which is a blessing and luxury in the NHS that such a thing is available in my geographical area.

I can join in a therapy which explores emotions and thoughts and reveals something to me every week. It hurts and shakes me but I have to trust that this can somehow lead me to coping and living better and being able to reach the same plane as everyone else in some way. I don’t think my BPD will ever suddenly disappear like with a magic curative pill but I do think I will learn to feel and live better and learn to let the good things ground me rather than the terror. The darkness will not grip so hard.

It’s the end of another year and Christmas is coming (and everything that means in my head, my heart, my family and out in the world). It’s a scary and shaken year and it has passed so fast.

Still, just for a few minutes, perhaps I can believe.

Ginny xx

Goldilocks and the three bears (with a sore head – or three sore heads I guess)

Goldilocks and the three bears (with a sore head – or three sore heads I guess)

[Artwork is not my own.]

Q “Why are you chasing after a giggling fortune teller with a crystal ball?”

A “Well, my therapist told me that I have to try to reach a happy medium…”

Yeah okay sorry about that one…

In therapy recently we’ve talked about different concepts of an emotional thermometer.

One view could be a bit like a normal thermometer which can read positive and negative temperatures (ie plus and minus zero, not positive and negative in the sense of value). When we reach a very extreme emotional state either side of the middle, it is a bad time for us and we are not able to use coping techniques or mentalise, because of the extreme we are at.

At the high, hot, “red” extreme, where the thermometer has “shot up”, we are experiencing very intense emotions – extreme anxiety, distress, hurt, anger etc. I guess it could also be an extreme of a positive emotion although I wonder if this would make coping as difficult? I probably should think more about that.

At the low, cold, “blue”, frozen extreme, we also aren’t able to manage because we feel so low, cut off from our emotions, maybe as if we are in a numb state.

It might, perhaps, be more possible for us to function in the low extreme than the high extreme – we might be more able to get through the day better than when we are in an extreme of eg distress and crying – but it is not a place we are calm or happy.

In the middle of the two extremes, so a range around the imaginary zero, is a mid-ground where we can have calm and balance and where we are able to mentalise about our thoughts and emotions and be curious and reflective about what we and others are experiencing. So the zero is not a zero in the sense of zero = no emotion, but it represents the mid-ground.

This happy middle ground is the “Goldilocks state”*- where we are not too hot, not too cold but “just right”. (Sadly the term just works with reference to Goldilocks and the porridge part of the story. It is not the emotional state one frequently reaches when finding someone else sitting in your seat on crowded trains and I’m not even going to touch on what happens when you find an unexplained person sleeping in your bed 😉 [joke!]…)**

In order to be able to employ coping strategies, the aim may be to find ways to bring ourselves away from either of the two extremes to this happy “Goldilocks” middle ground. No end of different factors, including our personality, what we have learned about regulating our emotions as children, the role models that we have had, and so on, can affect our ability to return to the middle ground and the extremes we go to in the first place. I guess this something I’m going to find my way through in therapy. Someone said to me that they find the term “emotionally unstable personality disorder” more accurately descriptive than “borderline personality disorder” because it better represents these extremes of emotion.

I think there are lots of ways the thermometer metaphor could be used. Perhaps instead of imagining a plus and minus end of the thermometer, it is more helpful to imagine a thermometer from 0 – 100 degrees and that the happy medium is around the middle of this range, too much is going towards 100, etc.

Personally I can identify with the metaphor that involves the minus temperatures because I definitely feel I slip into a state that’s like sub-zero, when I am so numb and cut off from my emotions (and others’) and can’t engage with anything. Sometimes I can’t even talk to anyone. It is not the heightened emotional arousal of my extreme distress but it is by no means good either. It may allow me to give the impression of functioning for a while, but I feel I am operating in a dream world, not really present. And it is very dangerous because of where it can quickly lead me to, or switch to.

Which brings me on to the thought that for me, as well as the thermometer there is a cyclical path that does not involve going vertically up and down the thermometer, but oscillates straight from one extreme to the other. My “sub-zero” state can very quickly flip straight to the high, hot, red end. My numbness can flick straight to anger, hurt, agitation, even thoughts of violence or fury which I would never normally experience let alone act on. I can flick straight into the compulsive need to self-harm and self-punish to turn the anger and emotional energy on myself. It feels like a frightening loss of control. I can oscillate in the other direction too. Overwhelming sadness and distress can suddenly plunge into numbness and disconnection and dissociation from the world into what feels like one of my other personalities and my memory of what has happened will go very blank. It feels very out of control afterwards.

I don’t know yet how I will start to learn how to some how get off this dangerous oscillating circle to get back to the happy middle ground or how to get control of the extreme emotions, especially managing anger.

Does anyone else switch or spin through emotions like this? I’d be really curious to hear other people’s experiences.

[Note – *and** : as in the children’s story of Goldilocks and the Three Bears, a famous children’s fairytale in the UK / USA. I know some readers are not from the UK so please ask if this reference is puzzling to you!]

Ginny xx

Lullaby for a Stormy Night – 1

In therapy yesterday, we talked about having a “safe place”.  Someone asked me what mine was.  This thought has prompted me to write a series of reflections on this theme.  I think there will be 5 or 6 in total but this may change.  This introductory post to the series is poorly written, for which I apologise.  It’s hard to form these thoughts into words.

The short answer is I don’t think I have a “safe place”, certainly not an actual physical place as I’ve heard other people with personality disorder speak of, and I don’t think I really did, bar one period of my early life which I’ll talk about in one of the subsequent reflections.

Over the past couple of years, with varying degrees of strength, I have felt a longing for a home, a stable home, although I didn’t necessarily term it “safety” in my mind.  I’m not sure if I have ever actually felt safety.  That sounds ridiculous.  Yet if things were not physically dangerous there was a terrifying uncertainty and need to prevent disaster through the years of living with mother’s illness and behaviour, then – still now – the need to prevent everything I fear in myself getting out to other people.  I was in danger, and I was the danger.

I did want a home.  I felt that more and more raw longing.  I felt it when my childhood family home was sold in my parents’ divorce, even though I had not lived there for many years and it had by no means ever been safe, it was still a wrenching goodbye and a loss of something. I don’t know what. Perhaps it wasn’t a loss if it had never been there in the first place, but an absence. Absence of home.  Longing for it I tried to stay with my dad and stepmum, and what happened in that time hurt beyond belief and still feels as though it greatly damaged this family further.

***

Now I am trying to create a home and a safe place in my flat.  I am incredibly grateful to have a place that is my own, to have had support through the council to get to this stage, where I can make a flat my own rather than renting a room as a lodger in someone else’s house or in a shared property.  I never thought this would come.  It is actually remarkably hard to make this flat a real home.  Partly because I am getting used to the responsibilities of having a home – a greater number of bills, repairing things, upkeep and so on, which is all new to me although it is very late in my life for this to be new! Partly because I am so unused to knowing how to create something of my own.

***

As a child, whilst I did not have a feeling of safety, I created places in an internal world and escaped.  Now this world comes unbidden and stronger than I expect.  I have been told in therapy that it’s unusual that there are so many relationships in my internal world, rather than it just providing an escape to numbness.  I don’t know how yet, but it is connected to feelings of having different personalities and of detaching from what is happening around me.

A counsellor I saw at school towards the end of my time there understood my escapes, I think.  She realised how little, until I went to school, the outside world existed to our family and how little it crossed with mine (or rather, mother’s).  The counsellor saw clearly how she taught me at home to keep me there for her, in her world, because she couldn’t cope with going outside it, magnifying school to be a terrible threat because she couldn’t cope with me going.  And the counsellor said to me that to be able to live as I did, I must have found some way to escape and rebel.  I was surprised at the question and could not answer it, though I could begin to see what she was touching on.  I’ve returned to it at various times and now I think that perhaps my alternative worlds were how I escaped.  (Also, so perhaps was schoolwork and so was my eating disorder.)

It feels sad to realise the absence of such a place now, and it is sad to realise the efficacy and strength of the alternative worlds then, and of my dissociations now.

***

Would I even know how to live if it were safe? How do I even begin to cope with the risks involved in becoming closer to those I most care about? When so much in me is, in so far as I can really believe, dangerous, repulsive, unacceptable, a disappointment, something people close to me really cannot cope with in the end and have to limit contact with?