Tag: trauma

Hospital

My friend has been admitted now (see my last post).

He was in much more danger than I realised. I’m not putting specifics to keep confidentiality and to avoid any unhelpful triggers for readers.  He only told me after we had parted earlier. He didn’t want me to know and be scared. Then he went to A&E but didn’t go in. He was scared. He felt huge guilt too I think. He was confused and distressed and we lost contact and he was walking or lost in the hospital grounds I think. I got there as quickly as I could in a taxi phoning security to search for him. Thanks be to God for Security whose officers tracked his car. Thanks be to God that he did make it into A&E. I still don’t know exactly how.

Again I didn’t want to leave but he really preferred I did as his anxiety about hurting me (which he has never done) was so high. I spoke with the nurses and we all agreed is best for me to come back in the morning. He’s being cared for…he’ll be on a drip…he’s not alone…

I’m scared. He was so weak and drowsy and in and out of consciousness / awareness.

I’m hurting. Shaky. Scared. Exhausted. I don’t know what to do with all I’m feeling for him and the overload in my mind and chest. Hurts to breathe.

I know I have to accept right now I can’t do anything. The doctors caring for him can do something. God can do… more than something. Still I feel so horrible for everything I can’t do and all the good I see in him where he only sees what he calls poison.

I place him in your hands dear Lord Jesus. Hold him please tonight. Whatever happens now.

Ginny xxx

How long their words stay with us

I’m trying to persuade a friend who is very ill to go to A&E tonight, or at least call 111. I wish I was where he is and could take him.

He is not at all well in so many ways. He’s waiting for several operations.  The worst danger tonight is that he has unbearable pain and symptoms to do with blood clots he has; we know with these symptoms that there is a danger of a blood clot in his stomach. We know he should seek help urgently in these circumstances with these symptoms; medics have told him this.

The main reason he is very reluctant to get help is what was said to him by a doctor the last time he was admitted, a few days ago. The doctor made a range of sarcastic comments about him to nurses and another doctor and said outrageous things to him including that hospitals are for people who are really ill not timewasters like him! This was when he’d been admitted when he’d attended as he was instructed to for an ECG and scans. He was found to have three bloodclots in his leg, as well as the numerous other serious problems for which he is due to have operations.

I cannot conceive what would lead a doctor to say what this person did. I know anyone can have a bad day. Anyone can dislike someone. Doctors, nurses, HCAs and other staff in hospitals are under a critical amount of pressure, now more than ever. But what would lead someone to say such bitter, accusing, unsubstantiated, false things to a person they are specifically there to care for? Did the doctor actually believe it? Or was he somehow venting anger, hate, judgement, for some reason onto my friend?

Not only this but without asking any questions to determine his mental state and without advice from the psychiatry team at the hospital or the community mental health service my friend is seen in, the doctor said to my friend that he should be Sectioned, and started trying to arrange this. Was he assuming or insinuating that my friend’s physical health conditions didn’t exist and were delusions? In spite of countless scans and test results and reports? Had he branded my friend as attention seeking because that’s the stereotype he holds of people with the mental health problems my friend has? Did that stereotype have such a hold it negated the physical evidence in front of him? Or does he regard people with mental health problems as unworthy of help or care however much they need it and think instead we should be shut up in institutions out of the way of those who he thinks do deserve help?

I’ve been on the receiving end of this numerous times. I’m really hurting for my friend and knowing he’s been left in so much danger now. Whatever the reasons behind what that doctor said, his words have told my friend he’s unworthy of help and must not ask when he needs it. My friend struggled enough with that already. He has had enough abusive people telling him he deserves pain, deserves bad, is asking for it. I don’t know exactly how it is in my friend’s head of course, but I know from my own experience how much louder memories that tell us we are unworthy, that confirm what our abusers told us, scream at us than any fledgling sense of ourselves and our value can. Words like this doctor’s join with the voices accusing and taunting us and they do not fade; they take a grip of us and punish us if we do not obey them.

My friend is in unbearable pain now and potentially great danger, and I’m trying to persuade him to go to A&E or if he cannot bring himself to do that, to call 111 for advice. I’m praying that if he does speak to 111 – when he does, please God – the advisers that speak to him are compassionate and show him there are people that do want to help and do have compassion and will help and believe him.

What this doctor said to my friend was awful by any standard, I think. Still, I wonder do people, especially people in authority roles (such as those who determine the medical care we get), know how much difference their words make, for good and for bad? I think words do have greater power for those of us with BPD, with histories of trauma and abuse and rejection, and no doubt with many other health conditions too. This is our responsibility to be aware of and to try to learn ways to cope with and I’m starting to see that very gradually,  with a lot of time, we can. It would not be at all fair to demand that other people treat us more carefully than they treat others. Actually, this is one of the things I fear demanding of others. But when we are already in crisis, desperately needing help, it would help so much if those caring for us knew the lasting difference their words and actions can make.

Ginny xxx

 

 

The wrong voices calling

The voices are very bad at the moment. My emotions are soaring and plummeting at the moment since my last group therapy and discharge on Friday. So it is not surprising the voices are worse. They often are when I’m emotional and stressed.

It’s as if now this stage of therapy is completed and I’m trying to hang on to the good and the real, the voices are getting louder (stronger?) trying to pull me back to the blackest darkness and terror where “reality” was my abuser’s words and threats. All morning I’ve heard her calling out to me. Sometimes just my name. Sometimes the things she’d say – mocking, detesting, making me an animal, less than human, threatening, confirming my evil and the terrible things that would happen (unless I gave in and gave her total control). I hear her. And it is terrifyingly real. It is totally outside, not an echo in my head. I turn towards the voice and dread grips me. It stays totally real to me even as I try to repeat my safety statement.

I am Ginny. I am 32 years old. Today is January 30th 2017. She is far away. I am safe now. I trust in God. …He created me for good not evil.

These aren’t the only voices I have but they are some of the most frightening and separate me most from reality. I don’t know how or if there is any way to stop or change the voices. If there is I haven’t found it in the therapy I’ve had so far. If I can’t change them can I lessen their power?

I try to remember,although the world created by my abuser was my reality – the only reality for 11 years and the most of it for another 14 or so – it is not the truth. The voice is not trying to do anything, or pulling me anywhere. It is a hallucination. It is a memory. It is not a person (now). A hallucination does not have a will or an aim. A hallucination is not physical so cannot pull or drag me. So why does it have power to cause me terror, to return me into the frightened child, to make it impossible to believe in my freedom or any goodness in me?

Several other people I’ve met who have personality disorders have shared having experiences of voices. In my 18 month MBT therapy, we talked about hearing voices in the group sessions. Sometimes for example, I’d share that I was struggling to stay present in the room because the voices were loud and scary and I was constantly being pulled away from reality. But in therapy we didn’t get to explore the experience of voices or how to cope with them, how they may interact with what you’re feeling and what is happening in reality, how they affect interactions… in therapy the focus was on using grounding techniques to move away from them and be present in the group and able to focus on others. Sometimes we talked a little about how the voices may affect our thoughts about ourselves and about others, for instance when we’re interacting with someone, leading to assumptions (they think I’m evil, the know I’m bad, that’s what the voices are saying) rather than curiosity about the other person’s thoughts.

However we didn’t talk about how to cope with them. We didn’t talk about their emotional effect on us, the way they pull us with them, the control they have even though it makes no sense, how they bring traumas right back, how what they tell us and make us feel is more gripping than our current experiences, if there is any way we can respond to lessen their power…

There is a place for using grounding techniques to cope and this is valuable. There is great worth in learning to be able to stay present for others here and now. Probably a value to staying present in the moment for ourselves. Yet I wish there were more than grounding techniques because there’s always next time the voices come. Their apparent power stays the same.

Perhaps I’ll look to see if there are any books that explore voices and how to cope. I’ve pretty much been told that the voices won’t go away but if I keep taking my medication, I won’t lose my grip on understanding they aren’t real. I feel I need to find more than that.

I would be very interested to hear about experiences of voices that anyone would like to share.

Ginny xxx

Bob and me and why couldn’t I say “no”?

WARNING: this post contains a passing mention of self-harm thoughts and a very brief generalised mention of abusive relationships

I’m sorry for this ramble that isn’t necessarily of interest to anyone. I really have to get this out and there’s nobody I can talk to. Kinda wish I could call someone but I don’t want to be totally needy and a burden on people.

It’s Friday tomorrow, which means group therapy. I’m really nervous. It’s the first group therapy for about 3 weeks following the summer therapy break. After the last therapy break (over Christmas) I found it hard to engage with the group again, stay present to mentalise and keep safe between sessions. The main reason I’m nervous this time is something that has happened between me and someone else in the group. Let’s call him Bob. I know that what happened is going to be talked about in group (because I talked it over in my 1:1 session earlier this week and my therapist told me it also needs to be discussed in group).

There’s a rule that group members should not have contact outside the group. It’s accepted that chance meetings happen or that we may see each other when attending the same hospital or GP Surgery  or other places and we aren’t expected to ignore each other if this happens, but we are not supposed to arrange meetings. One reason for this is that we should not discuss what happens in group outside group where not all the members are present. In particular we should not talk about other group members and if group members felt they or their issues were being talked about, this could be very upsetting and damage trust between group members.

“Bob” and I sometimes bump into each other because we tend to head off in the same direction after group. We sometimes bump into each other in the supermarket or in town because sometimes we go to the same church. Small world and all that. At these times we’ve chatted and I never felt that was wrong. This has happened with other group members too; we’ve discussed it in group and everyone has felt that it’s okay when that happens. Some members live quite near to each other so it’s somewhat inevitable.

In early June, I talked a bit more to Bob whilst we were in the waiting room before group started, because he was going through some practical problems that I had also had experience of and I was glad to be able to suggest a couple of sources of support for him. Then Bob asked me to meet him for a drink. It was his birthday and I knew that he does not have any friends locally and had been through a rough time. Straight away I didn’t feel comfortable with this. It was breaking the group rule. It could be breaking other members’ trust. I felt this was different from all the previous times Bob and I had talked, because this wasn’t a question of bumping into each other or waiting in the same room together for appointments; it was going out of the way to arrange a meeting. I was straight away nervous about why he was asking me. Plus going for a drink with anyone is hard for me, especially someone I don’t really know very much. Crowded places and lots of unknowns are difficult for me, raising my anxiety. I didn’t want to say yes. But I was completely unable to say no. I knew he would feel hurt and rejected and upset. I would be being nasty and rude. There was just no way in my head I could say the “no” I wanted to.

[I’m scared…]

Instead, I agreed but gave the proviso that it definitely be a one-off, just for a drink because it was his birthday. I also said that I wanted to be very, very clear that this was as friends. I have a lot of issues of my own and I do not find relationships of any kind easy. I am not looking for anything more than friends and I would not be able to give to that kind of relationship what I would want to. I said I felt silly and awkward saying that but just to make sure there can’t be any confusion I wanted to say it outright. Bob said he totally understood that and he felt the same.

So we met for a drink one afternoon. Well, that was the agreement, I thought. Except that Bob made it dinner, one evening, at a restaurant. And he insisted on paying for me. And it wasn’t a one-off, because from there Bob contacted me more and more. He wanted to meet again and again. He told me more and more that he had been thinking about me and praying for me and that he thought I was a very special person. And every time, I didn’t want to. I wanted to say no. But I couldn’t. I didn’t. And we met again, then another time, then another.

[I’m so scared even writing this. I feel I can’t breathe. I’m twisted up inside. Why?]

I couldn’t say no but I hoped it would stop. I tried to say. I said I was worried for both of us – that we’d get worried about the other and not be able to tell anyone, that we’d share things that we really needed to talk about (in group or with our therapist) and we wouldn’t be able to, that I wanted to share our meeting with the group, that I didn’t think we needed to hide it, that I thought he was trusting me and thinking of me differently from everyone else in the group and that could be damaging, that he was sharing things with me and not with the group and that could be bad for him (and the group)… I said these things, I think. Yet I let them be quickly brushed aside. Bob wasn’t dismissive. He wasn’t typically pushy or crass. Somehow though, I let my concerns be put away by what he said in response and I didn’t follow them through.

It was evident he cared for me very much and thought well of me. A lot of it seemed to be true Christian care and prayer and friendship. However, I knew it went beyond that. If someone cares for me, it frightens me. Bob would say in group that he had been thinking about me and it scared me there too. I wasn’t the only person he’d say it about but he seemed to say it about me more than about others. I know I get scared about this kind of thing and it makes it hard to know (or hard to trust myself when I think I know) if the other person is caring about me in a normal way or if something is unusual.

Scared turned to terrified when he seemed to care for me obsessionally. It sounds wrong to say that. It sounds like he did something wrong. He didn’t hurt me. He didn’t force me. He did nothing wrong. That’s what makes this harder. He did nothing wrong and he is not a nasty person and he is a kind, caring, generous, Christian man. But his contact became more intense. Even how he looked at me. He’d watch me so intently. He’d comment on tiny things in my appearance and say he couldn’t get over them. He made a few comments that freaked me out, like that he couldn’t resist me if I had long hair, things about wanting cuddles, that I shouldn’t let my father know his age [Bob is substantially older than me but – what??!!]… I wanted to run. His texts got more frequent. Several times within an hour at the end. I knew I could not be what he thought I was and couldn’t give him what he needed.

In the end I was scared enough that he was obsessed with me that I stopped it. I checked out my feelings searching online to see if people can be obsessed with other people and if this happens in relationships, knowing the answer really but having to check out whether it is something bad and whether it can lead to worse – because I couldn’t trust myself. Partly because he really was being so “nice” and not doing anything wrong. As well, I was scared he was telling me things that he wasn’t telling the group. I was trying to encourage him to tell the therapists and tell the group. I knew too much about pressure he was under and danger he could be in and help he might need. I knew it wouldn’t be safe for either of us. I felt that whenever I ended it or whether I just let it carry on, I would end up letting him down and not being what he so much thought I was and he would get hurt and the longer it went on the worse it would be.

I couldn’t trust myself. I felt so strongly that there was a sexual or at least physical attraction undercurrent, that he was attracted to me, that he wanted more and wanted me to be something I never can be to him, that he was becoming what felt like obsessed with me. It is so obvious to me now and it scares me now and scared me then but for so long I couldn’t trust this instinct and end the relationship.

[I want so badly to cut. I won’t. I won’t. I am determined to sit with this and try to stay present to feel in group tomorrow and not numb everything down by self-harming.]

Though I was scared I don’t think he knew it. I don’t think he knew I was uncomfortable because I said nothing and pursued none of my objections. Actually, I was dishonest with him, in sharing time with him but actually wanting to get away whilst he thought we had a connection, or were sharing something important. I feel so guilty for that. But then, we did share something. We are both Christian and we spoke often of God and hope and mercy and that is something I cannot share so fully with many people. It’s something I don’t really talk about in group, not yet anyway, and it’s a different kind of conversation. Genuinely we did share that and it was good. It’s not black and white and I don’t blame him and he did not do anything bad or wrong.

I know a lot of my fear and my feelings came from triggers in our conversations and relationship which probably would not have been triggers to anyone else. To the next person perhaps it would have been easily passed off or nothing important. For me there were so many triggers to my emotions and behaviour that reminded me of when I was being abused. That sounds terrible to say. It makes it sound like he manipulated or took advantage of me. All he did was kind. Apart from me not wanting it and feeling we were deceiving people and feeling scared. He didn’t know. But it’s how I felt. I started behaving and thinking like I did in the abusive relationship. It’s why I couldn’t say no. It’s why my feelings totally disappeared for me in the sense that I dismissed them all and followed only what his feelings and his needs seemed to be. It’s why I couldn’t say no, couldn’t trust what I felt, wanted to run but it was utterly impossible to do anything about it. I fell into the same patterns of watching and silence and trying to get it right, perceive his needs and his emotions correctly, trying to save him and keep him from danger. His obsession with me and his need for me reminded me – in my emotions if not in facts – of the abuse too. When my abuser wasn’t threatening me she was attributing bizarre powers to me, largely perhaps stemming from her own delusions (or perhaps it was all part of the plan of the abuse), powers I did not have, powers that I was to have because I was born at a particular time because she had planned it for a reason; she’d watch me obsessionally and intently, she’d have me keep secrets… I ended up emotionally right back there when Bob talked about how good I am, how he thought about me, how important it was we shared these conversations separate from the group, how it should not be shared with anyone in group because that would get too complicated, when he so intensely contacted me and needed me.

When I did finally end it, I told the service because I was so afraid what Bob would do. I am not so arrogant that I think contact with me can matter that much to anyone, but I was sure that he’d interpret me ending our contact as total betrayal and breach of trust. I know those kind of feelings put him in danger, because of what he’s discussed with me both in group and outside. I didn’t want him to know I was scared, because of a particular thing he shared in group once. I thought for days about how to do it. I told the PD Service right away that I’d ended it and told them I thought he’d be in danger. If the service hadn’t been there and I hadn’t believed they could try to keep him safe, I would not have dared to end things.

I’m scared for group tomorrow. What’s going to happen. How it’s going to affect Bob when we have to talk about it. If I admit I wanted to stop the meetings, or that I had worries, it makes it sound like he forced me. He didn’t do anything to force me. So many times I could and should have said no. But I have to be honest. I’m scared how what’s happened will affect other people in the group and what they’ll feel. They may be hurt, they may feel betrayed, angry that rules have been broken and trust has been broken, they may think we were trying to do something in secret to exclude them. I think everyone will lose trust. I don’t know what Bob feels about it being discussed in group and I don’t really know what he feels about me having ended contact. I told him that I had told the service, but I don’t know what he feels really. I just feel so sure he feels totally betrayed. I’m scared he mightn’t come back to group. I’m mainly scared about him and about the rest of the group and how they’ll feel but I’m also scared how unable I was to act on my feelings and say no.

My head is imploding with all these feelings. Maybe I’ve really turned the proverbial molehill into a mountain but for some reason this whole situation is leading to really strong unbearable feelings for me. I’m fighting so so hard not to self-harm tonight. I’ve been trying self-soothing, trying to do creative things, trying to do practical things, hot drinks, texting a friend about something else, trying to take the focus away from the emotion and away from myself. Then I wrote this. In a minute I’m going to try a weird approach that just occurred to me – I’m feeling totally nervous and wound up so maybe if I watch a DVD that makes me just a little bit on edge and in suspense it’ll give another direction for the feelings and get some of them out. Not sure how that’ll go down and it’s just a thought that occurred to me, but here goes! A couple of episodes of Grimm should do nicely.

Ginny xxx

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

A shaky week

This week I planned to get all caught up here on comments and visiting your blogs. However as so often happens, things took a different term and I seem to be as useless as the proverbial handbrake on a tortoise. And moving at a similar speed too!

This hasn’t been a very stable week. I had a meeting with my new support worker, a difficult consultation with my GP, two relationships breaking down very painfully, an important but emotional group therapy where something that occurred brought flashbacks of a frightening incident in my childhood for which I feel responsible. Also I got some very unexpected news and had a conversation that seemed to throw everything. I’ll post about it in due course once I’m more able to cope.

Not big things in the grand scheme but I’ve got behind again. So once again, I’m sorry for being so slow to answer messages. I care and I’m praying for you and I’m sorry for how I struggle to write.

Ginny xxx

“Are you one person or two?”

“Are you one person or two?”

I’m writing this in a coffee shop. I was just thinking about therapy on Friday when a lady came up to me. “Are you one person or two?” she asked straight away. I had to smile – nope, I’m not currently in a dissociative episode but thanks for asking! (It turns out that what she meant was “is this seat taken?”)

It does feel like having to be two (or more) people sometimes. The socially acceptable me that has to cope at work and pretend to be fine, and the emotional mess underneath. The me that is vulnerable, scared and crying and still re-experiencing the traumatic events of my childhood and desperately wants a hug. The me that is angry and bitter and has lost all compassion or patience.  The me who is hypervigilant and whose thoughts are spiralling, and bound to the voices and obsessional thoughts, and the me that is out of it, numb and disconnected, only watching the world outside, losing huge chunks of time.

Sometimes it isn’t a question of having to be two separate people because part of me is so unacceptable (for example, having to hide what’s really going on in order to function at work, or in social situations). To some extent I suppose having the other “me” that goes to work is some kind of a coping strategy. Otherwise I might be hidden at home under my blankets crying all the time. The problem is, sometimes it’s a question of flicking, uncontrolled, unstable and without wanting it, between the different “mes”, and being taken over by the different emotions and reactions to the emotions the different personalities experience. I think maybe, because my emotions are so all-consuming and take me over so much that I don’t seem to exist outside them, when I have such a surge of different emotions, going through them feels like being split into different people, all dissociated from each other. Another problem is losing memory around the time that I experience the strongest emotions, so feeling I have not been present at all. And whether switching people / personalities is wanted or not, it is shattering. When it’s unwanted, perhaps because it’s frightening. When it’s wanted, it is completely draining constantly trying to conceal what you’re really feeling and act against it, and it can make me feel that I am being very false,  and that I am so bad really on the inside even if nobody else sees it yet. I guess because I think the emotions I label or experience as “bad” make me bad. That’s something I probably need to try to examine.

Now, particularly for fans of The Big Bang Theory, this could of course turn into a particular skill, a la Sheldon Cooper 😉 :

[Raj wants Sheldon to sign up to an online dating website.]

Sheldon: “Are you sure? I’ve heard that on those sites, often when you think you’re corresponding with someone, it’s actually a computer program pretending to be a real person.”
Raj: “And you’re afraid it’ll do a better job than you?”
Sheldon: “Excuse me. No one does a better job pretending to be a person than I do. Siri comes close, but I know more jokes.”

Certainly it can feel like pretending to be a person. Or pretending to be an “okay” person, at any rate! I’m trying to focus on the fact that even when we are in pain or turmoil or angry or whatever it may be inside that we feel is not okay, it’s what we do and how we act that is important in terms of good or bad. I’m not saying that I think it’s bad to express these difficult emotions, to get upset, sad, angry and so on. I’m learning that we need to do that. I mean that whatever we feel, and indeed whether we think it’s a bad feeling or not, we can still do good. Even if I’m angry and upset inside, I can still choose to be dedicated at work or to do some little thing to show kindness to a friend. Having the difficult feelings inside doesn’t mean we are worthless, or can’t do any good. Everything is harder, for sure. It costs us much more to smile, go out of the door, talk to people, go to work, etc etc, when we are having an awful day. If anything this increases the value of the good and the kindness we do because it is done with all the more effort and love.

Keep drinking the coffee 😉 and keep going!

Ginny xxx

[Photo from Gilmore Girls episode “Luke can see her face” (season 4 I think) …..The Big Bang Theory – directed by Mark Cendrowski, produced by Faye Oshima Belyeu ; Gilmore Girls directed by Amy Sherman Palladino. All rights belong to the respective artists.]

 

Walking this Borderland #10 – bat naps and counting sheep: the struggle of sleep

 

[NCIS produced and written by Donald Bellisario and Don McGill; all rights belong to CBS / Channel 5 and the respective artists. With thanks to Dream-A for the clip (Season 8).]

Sleep is one of the first things that I find becomes difficult when I’m going downhill. Just when I’m thinking about going to bed, my psychotic symptoms usually get up. My auditory hallucinations and sometimes the visual ones will be worse when I’m alone at night. The re-experiencing of traumatic memories definitely is worse. For long periods at a time, because of historic abusive experiences and fears, I’m too scared to sleep in my bed and then if I try but have to get up, I can become terrified to open the door to go out of the room as well. I’m locked into a flashback of a terror I had as a child that I’d find my mother dead outside my room, because of a threat she made. To escape it I’ve been back to sleeping on the sofa again for weeks.

Anyway, I’m going off topic a bit. At the moment to try to get back into a proper routine of relaxation and proper sleep, I’m trying the following three tips for a better night:

First, I’ve moved things around in my room (for example, putting the bed in a slightly different place) so as to create a change of environment and make it as different as possible from the one associated with my fears and flashbacks.

Second, I have found a relaxing CD which I am playing specifically before sleep time and only before sleep time, so as to make the association between that music and those words, and relaxing for sleep.

Third, I’m going back to trying a technique one of the nurses told me at the hospital, which is a modified version of counting the proverbial sheep. When you are in bed, close your eyes, and then close them a little bit tighter – not scrunching up your eyes, but just pressing the eyelids closed a little harder than you would if you were just blinking, maybe. Then count very slowly back from 100, concentrating on each number. Or, try imagining a colour which you enjoy looking at, and hold a cloud of that colour in your mind. Focus on it but try to prevent it taking on any particular shape or form. Though the latter sounds strange I found it to be curiously effective as relaxation for a few minutes, together with some music, even if I did not fall asleep!

Right, here’s to “bat naps”, and eventually a night in bed.

Ginny xxx

Crisis Plans

Last week, after the really distressing meeting on Tuesday, where I completely lost it and just screamed and screamed, I had another meeting with the same CPN on Thursday. It went quite well although I am still reeling from Tuesday. I never lose it like that when anybody else is around. I do that alone at home, usually at night, usually cutting myself before I can reach that point, because it stops some of the noise in my head for a while and quiets the fury and hurt. On Tuesday all my control methods didn’t work and the worst of me exploded. Since then I’ve been feeling both raw and outside myself at the same time.

We tried to come up with other ideas for what to do when I am extremely distressed when I am on my own, other than always turning to cutting or overdosing. The problem is that no matter how harmful those things are, they do “work” to stop the feelings (if only by stopping me being conscious!) punish myself, so bring down the emotion and enter a state of numb nothing for a while, or at least explicable pain.

One of the things we came up with was the Rescue Box, which I’ve posted about previously. I’ve committed to making that up this week.

The other things my CPN suggested were: putting my head under cold water eg cold shower for 20 seconds, to shock the body and so bring down the emotion (a bit like the lemon juice idea!), starting some activities that would give me more social interactions and so leave me on my own less, developing a relaxing routine for evenings (which I’ve got out of the habit of), and sorting out my dodgy internet access so that I can have more contact with people via blogs and similar, as well as making use of online resources for relaxation and mindfulness.

I’m not very sure how this is going to go. I’m starting with small steps, making up the Rescue Box this week and getting in contact with my internet provider.

A large part of the problem for me is that all these techniques are great ideas but I too quickly reach too high a level of distress to be able to use them. When I’m in that state, or when I have more of the psychotic symptoms (which tend to accompany higher distress), it’s as if the part of my brain that would reflect enough to try one of these techniques just shuts off. I have an overwhelming need for someone else to keep me safe and almost hold me and ground me and prove something exists beyond the fear and distress. But the PD Service seem absolutely against anything that would lead to me not being on my own in these situations (like being referred to the Crisis Team who’d come to see me at home, or being admitted when I’m overdosing etc). I’m not entirely sure why. They are written into my “crisis plan” as ways to keep me safe when I can’t keep myself safe, but when it comes to it they are withdrawn or refused. This is something I’ll be talking more to my 1:1 therapist and/or Care Coordinator about.

I guess I have to learn to discover earlier when the extreme feelings are coming – at the moment they spring up at me from nowhere and that’s terrible. It feels very out of control. There’s no doubt that as I’m experiencing more emotions, I’m becoming less stable.

I’ll post an update on how things are going with trying these techniques.

Ginny xxx

Mothering Sunday

Mothering Sunday

Today in the UK we celebrate Mothering Sunday. I’m wishing good and lovely things to all you mothers and mothers to be out there. Have a blessed and joy filled day. You are special.

It is not an easy day for many of us, myself included, and I’m holding in mind especially everyone who has lost a mother or a child, or who is far from them, through geographical or emotional distance or irreconcilable hurt. I’m praying for you for comfort and some way to heal the longing, a little bit.

Mothering Sunday is a strange day for me. I am never quite sure what to do as my own relationship with my mother is so broken beyond any possible repair I can see, because of the abuse and her feelings towards me, and because it feels as if what I’ve discovered about her in recent years following the abuse has invalidated any previous attempts at a relationship with her.

I’m very fortunate that I have a caring step-mother and that my dad and she are very happy together and constantly busy, sociable, undertaking new things and many creative projects, all of which never happened in the family when my dad and my mother were together. I have three step-siblings and am slowly building more of a relationship in particular with my step-sister. Also, I am fortunate to have what can feel like a mother in a member of a close friend’s family – when I was very unwell and family life was traumatic, I was welcomed and cared for in their family and that is an amazing gift. I’m thankful.

I think that a loving bond between mother and child is needed by each of us at least at some point in our lives.

Happy Mothering Sunday.

Ginny xxx