Tag: community mental health teams

Punished for hope

Go on then. Smash me into the ground and kick me as hard as you can.

That’s what they do to me.

I was promised “victim support” when I went to the police about the abuse. I was promised support from the victim support team’s specialist CPN and to finally get help with the trauma, flashbacks and PTSD. A phonecall with the CPN was booked in for today by the support team. The police officer who took my statement knew.

I got the call from the CPN who told me she is employed by the same mental health trust as the hospital I’m seen at for my personality disorder. Oh good,  I thought, that should help, shouldn’t it? She’ll know my mental health background and have my records. Wrong! She said that she’d organise support for people who aren’t currently seen in the mental health trust and get them therapy to help them deal with the trauma of what they’d had done to them but because I’m seen in the personality disorder service I’m “already in the most appropriate pathway” and she can’t help me.

But the personality disorder service specifically don’t address trauma and PTSD. The therapy I have there doesn’t deal with flashbacks, memories, hallucinations etc.  It deals with here and now. Which is great and important but leaves all the trauma untouched. I need help with that.

Why am I not allowed that because I have personality disorder, when a victim who does not have personality disorder, would be allowed to access it? Why am I denied help with one condition because I also have another diagnosis? You wouldn’t say to someone who had been in a car accident and fractured their leg as well as aggravating a pre existing back injury, “oh sorry we aren’t going to get a surgeon to set your leg to heal because you’re already being seen in the spine clinic.” So why is it deemed okay to deny me victim support because I have BPD?

The CPN said I should make a list of all my unmet needs and take it to my appointment with the psychiatrist next week. Oh my days have I not already begged for help with all the “unmet needs”! She just didn’t seem to grasp that the personality disorder service simply do not address the PTSD area. Which in itself is fair enough, it’s a specialist PD service – but it’s not okay if you’re denied access to other specialist services!

Why was I promised psychological help from this victim support team and this CPN if this is the outcome?! Everyone knew I am being seen in the PD service.

Then the CPN said oh they just don’t offer this help in the community teams. Yes and don’t you think I know, after fighting for 15 years plus. … and that’s why it’s speed to be coming from her!

This is yet another kick and yet another betrayal. Yet another thing I held on to snatched away. Yet another desperate hope gone. Yet another trick, this time effectively from the police, it feels like, though it isn’t the officer’s fault, he was nothing but supportive and this victim support team is separate…. but this is the last hope of people believing me and allowing me any help. And it’s now gone.

It’s absolutely proved everything my mother threatened. People would think the fault was hers, if they ever found out, and they’d take her away. Nobody would imagine a child could do all this. But really she’d know and I’d know that it was my fault all along, and what I’d done (and how evil I am, the voices add). I told. They found out. They think the fault is hers. But I must remember, the voices say, really it’s me all along, really I don’t deserve anything because I’m so evil. It’s confirmed it. 

It’s the hardest kick and tightest grip of the terror and memories again.

I was promised support when I went ahead to make the statement. Now I’m left and left more raw than before. I don’t regret doing it but can’t cope and I’m not okay and I’m not safe.

To top it all off I called the personality disorder service to be told there are no calls back today because the team have gone on an away day. Shame the voices and flashbacks haven’t gone on an away day. Shame the planning for how much hurt I can cause myself hasn’t.

 

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In person

I phoned the GP Surgery last week to try to get an appointment. I wasn’t feeling well at all after trying to cope with memories and flashbacks and really high anxiety. It’s unusual I ask for help like that but this time I did. The duty GP phoned me back. After we’d talked very briefly she said there weren’t any appointments left and it sounded as if I “had insight” and knew the coping strategies (which means distraction, grounding etc) so there wouldn’t be anything to gain in having a face to face appointment. She would not book me in. Actually there’d have been everything to gain in seeing someone and it would have helped me greatly.

This and many other incidents got me thinking how much it helps me to meet with someone in person or have someone with me. It’s very important to me. I’ve been very upset when a friend has canceled meetings. I find the telephone support offered by the clinic is not enough to keep me safe and I’ve longed for a safe place and someone with me when I’ve exhausted all possible coping techniques i can do alone.

In my last 1:1 therapy we talked about what does it mean to me to have a meeting with someone arranged, whether it’s friend or professional. I think it means a certain amount of hope, something I desperately try to keep going until, it means I have some worth if anyone would spend time with me, it means not being alone. .. It’s easier to find what it means when meetings are canceled or refused – I’m worthless, nobody wants to be with me, I’m clearly the last person anyone would choose, everything else in their life is of more worth, I can’t do any good to the other person, they have written me off, I don’t deserve help, they don’t believe me, I don’t deserve. … all along they just couldn’t wait to get rid of me, how stupid I was to ever think differently. It just confirms what I already knew.

Then there are also certain rules, I guess, which I hold myself to and which define rrelationships. Like that friendship means always being there for the other person no matter what. Or that it’s important to keep arrangements and commitments to friends and do what you promise and if you don’t you’re rejecting the other person and not treating them with respect or kindness.

This means I really struggle when meetings are cancelled. Also, having someone with me and someone I can rely on is a huge and fairly childish longing in me. The concrete presence of someone with me is often the only thing that calms me or prevents my self destructive behaviors. Equally though, it has to be someone I absolutely trust not to leave, which means very few people. And part of me is always waiting for them inevitably to leave, when I show too much what it’s really like inside me. It’s something that can almost never be fulfilled (and the people who make decisions about the support I’m allowed seem set to prevent that need being answered and in my most desperate times that can lead me to very paranoid thoughts). Needing it brings me massive feelings of guilt now I’ve admitted it.

Does anyone else feel this desperate need for the concrete presence of someone with you?

Ginny xx

Utter betrayal and a sick joke

TRIGGER WARNING FAIRLY MASSIVE I GUESS

My friend has left me. Hates me and thinks I’m a selfish demanding b*tch making drama over nothing.

My PD service have basically chucked me. They’ve been playing a cruel game for a while. I beggedand begged them for help again today. I am not safe. I cannot go on. I’m cutting daily and overdosing more than every week. I cannot get a single simple little thing promised to help me even a phonecall. The game of deceiving me and shoving me nearer the edge has gone on for a while now and thoroughly broken me and ripped the wounds apart.

Now I’m utterly unable to go on and falling over the edge they will not catch me just watch me fall and laugh. I begged and begged for help. I won’t detail everything here because it would cause distress but I made it clear if I do not get help – and I need hospital or someone with me all the time now – I will seriously harm myself as much as I can and can’t be sure I won’t harm others because I’m utterly out of control.

It became crystal clear they don’t believe me and think I’m a liar and a fake and doing it for attention and don’t need help and don’t really feel these things. That was the final twist of the knife. I had known all along they thought that really but today was the ultimate proof. Nobody thinks you need hospital, they said. It’s fine for you to go. Let’s leave it there. No help. .. I want you to ring me when you get home when you’re going to take the overdose, he said. Why on earth would I do that? I had spent 2 hours telling them that’s what I’m going to do and begging for help and they didn’t help me and sent me off alone. Why on earth would I phone them to go through all that again?

Do they literally just not believe me and think I’m faking or do they think I’m such an evil bitch that I deserve this punishment and pain and they hope I do it, hope I die?

When I tell them what it’s really like and beg for the help I need they think I’m a fake. So that’s the truth. I’m evil sh*t and I do deserve hell.

How do you keep on trusting?

I’m really struggling at the moment with the fact that whenever I’m really counting on something it gets taken away. When I’m already at breaking point, things that should be simple are made incredibly difficult so I don’t get help I need or have to go through complicated, draining processes I can’t cope with.

I’m not even talking about more “abstract” ideas like complex relationships or values but very basic things like urgent appointments repeatedly being cancelled, having appointments for support booked but being told the wrong time or the booking not being made, completing lengthy forms for Benefits only for the wrong decision to be made with the wrong information, on and on. I suppose the apparent rejection, lack of care, implication I am undeserving and not allowed help, behind all this, makes it worse.

Most recently it was being discharged from 2 days in hospital after I’d overdosed at the weekend, having had a lengthy assessment with the duty psychiatrist, who discharged me on condition I would be seen by the psychiatrist at the personality disorder team the next day and my CPN within 24 hours, a report had been sent straight to them, and that I could hope for more support. So off I went to the PD team at the hospital on Monday. No report had been sent. The psychiatrist would not see me. The report has now been sent this afternoon. There is still no intention for the psychiatrist to see me despite the duty doctor and actually also my GP requesting it. They actually asked why did I think the psychiatrist needed to see me! No more support is forthcoming although I have had telephone support. The duty workers say haven’t I got any friends I could stay with to be safer. My 2 friends who are nearby have made it clear this is not possible.

There is an absolute pattern of this happening over and over, week after week. I can guarantee that if I’m desperate, just trying to hold on, relying on my next therapy appointment – I’ll get a call to say it’s canceled.

How do you cope with this kind of thing?

It feels like a cruel trick or a sick joke and spikes my anger and hurt out of control and I disintegrate and the feelings I was struggling with already explode as well.

I do not think it’s only me it happens to. In fact someone else in another online forum was saying a very similar thing and that it’s as if we’re never allowed to rest, it’s always the next test and the next thing to go wrong.

How do you keep trusting when you feel like this? How do you stop resenting and being consumed with anger? Becoming more and more self centred?

It is really hard to try to keep trusting the hospital and the doctors when I can’t count on anything and repeatedly hope then bang, it gets taken away again.

I shouldn’t put my trust in anything or anyone and I should detach from the need for it and not depend on anyone or anything. But how do we even start to reach that point?

Ginny xxx

What do you do “out of hours”?

I really needed crisis support on Friday but didn’t get it. After therapy group I was spiraling down and out of control, then a number of bad events came snowballing, knocking me further down. I had a brief conversation with the duty line at the hospital and was supposed to get to speak to them again later in the afternoon but they didn’t have time. I was in pieces, cut and was on the edge of the very dangerous place I cannot take a single step more and decide to end it. Thanks be to God I didn’t but I took a higher dose of my tablets than I should to knock me out and stop the hurt (not really an overdose as it wasn’t over the maximum dose of anything, but I took more than I’m prescribed and everything together).

I’ve been fighting through this weekend as I’m working. What I want is numb, stay at home, stay under a blanket, no more feeling, no more thinking, no more hallucinations, no more noise in my head, never have to speak again, never do more harm, someone to hold me, to go to the dissociated place, forget everything I have to fight through and just stop and be allowed to need it to be no more, stop, sleep.

What do you do when you feel this and you can’t get help? It’s the weekend and/or evening. I couldn’t get help from the hospital on Friday. There will be nobody available until Monday and who knows if they will have time then to see or call me.

I could go to A&E but I wasn’t sure what they’d do, and it’s not really an emergency and there isn’t an instant solution. I need more help day to day. I could call 111 the NHS out of hours line, but they tend to tell you to go to A&E if you admit to self harming or being suicidal. They’d probably take my tablets away too. When I’ve been put in touch with a community crisis team before I’ve actually found it really unhelpful. They did not (in my uneducated opinion) understand BPD. What they said piled on the guilt and made me closer to ending my life and they were determined to show me I didn’t need (or deserve,  I feel) any help and Iwasn’t genuine. If i got that right now I would go through with ending it.

Part of the problem needing help out of hours is having to try to explain your whole story – trauma, abuse,  flashbacks, hallucinations, voices, BPD, hurt, fear, desperation and needing to end it – to someone who doesn’t know you or the therapy you’re having. It’s too frightening to do and the cost of being misunderstood too great.

I promised a friend that if it got to the worst I’d go to A&E before I did anything. I would,  I’d keep that promise.  I made it only because she would be more worried about me and stressed if she thought I wouldn’t. I would go at that point, out of honesty to her. Even though having reached that point I’d not want to be stopped.

What do you do when you need support out of hours and can’t see your GP or your usual clinic / hospital team? I’d be interested to know what others do.

I know a lot of it may involve other coping strategies not going to someone else for help. But what about when it’s bad enough they don’t work?

Ginny xx

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

PD and ED – some thoughts about personality disorders and eating disorders

The majority of other sufferers of personality disorders that I have met with, as an inpatient and in the community service I go to now, have difficult experiences surrounding food, for example, having diagnoses of anorexia or bulimia, struggling with fluctuating weight, punishing themselves with food-related actions (starving or making themselves sick or bingeing, or deliberately eating foods they are allergic to in order to provoke a painful physical symptom) and so on.  This is just an observation from what I have encountered and there could be many factors involved – for example, issues around weight do seem to be on the up in the UK (or at least more prominent in media coverage?) and the majority of people I know with personality disorders are women, amongst whom eating disorders are also more common.  However, it did get me thinking and resonate strongly with my own experiences of food and disordered eating and of working in an eating disorder service.

I think food is tightly bound to feelings of anger at self or at one’s own uncontrollable emotions, and makes an effective – though it hurts to use that word – form of self-harm.  When you have thoughts like: I’m so disgusting I don’t deserve to eat / don’t deserve good food only rubbish, I do not deserve to care for myself so I only eat junk, I hate my body for making these demands [to eat], go on you disgusting bitch [I say to myself] look what you’ve done you greedy pig, now get rid of it, throw up til your throat bleeds….you’re foul, you’re disgusting, look how much you’ve hurt everyone, starve and make sure it hurts……. Those kind of thoughts; or even just being too low in the darkness to respond to the basic need for nourishment.

When my eating was the most disordered, I didn’t get specialist help or even much acknowledge the problem in the worst times, despite the efficacy of the function it was serving for me.  I was also blind to it.  My mother (in part because of how her thoughts were twisted by her own sickness) also prevented me from accessing the help that my GP desperately wanted me to get. Now I know that I was underweight enough to fall into the severe anorexic weight range where dire physical consequences were a risk.  My periods stopped and I suffered damage to discs in my back during this time.  (More on my own disordered eating in another post.)  This was long before I was diagnosed with personality disorder (my eating disorder first started when I was about 14) and it is only now, nearly 15 years later, that I am acknowledging it and can articulate what its functions were.

The other day I spied a leaflet for carers in the community service I’m part of, which discussed some of the signs of personality disorders.  “Eating disorders” was actually specifically listed as a “symptom”.  This struck me in particular because personality disorder often occurs jointly with other psychiatric diagnoses but these would not be classed as a “symptom” of personality disorder.  (For example, many people with forms of personality disorder also have bipolar disorder, but bipolar would not, at least to my knowledge, be classed as a symptom of personality disorder – it is a different diagnosis which someone may have at the same time.)

I would agree that struggling to feed myself well and at times, actions that would be classed as eating disordered behaviour, are tightly related to my emotional instability, lack of control over strong emotions or thoughts that are repulsive to me, and the need to punish and hurt myself.  So yes, I would say these are “symptoms” of my personality disorder.

I talked to two friends about the leaflet I had seen – both are highly experienced in the treatment of eating disorders.  One point they made was how much eating disorders are a sign of something else painful.  It’s often thought that once someone’s problems with food and weight are treated, they are “all better”.  However, that is very much not so.  The eating disorder is often masking, indeed a mechanism for coping with, something else.

It could be numbing, or controlling.  Overeating could comfort, suppress, bury, emotions.  Starvation, I think, ironically consumes; the hunger that gnaws painfully eats away other feelings and leaves a blessed numbness.  Thinking back to my own times of starvation, I have to admit that it was, at the very least in a significant part…. fantastic.*  I was wrapped in a protective, protecting numbness, for long periods.  (The times this cracked were utterly terrible, but the times it lasted froze me in a lighter, safer state, so it seemed.)  I will explore more of this in another post.

One struggle in personality disorders is that our emotions may, with less stimulus than it ordinarily takes, reach an unbearable high where we cannot cope or think, where there’s only fear, upset, panic, darkness, anger, sadness… or much more occasionally, extremes of joy (I am not sure why the extremes of positive emotions are so much more occasional.  Perhaps do they just trouble us less as these emotions seem more acceptable, and therefore we remember these extremes less?)  In these extreme states we can’t think, we don’t act rationally, our memory may be affected, and we may take extreme actions like overdoses, self-harm, suicide attempts, and so on.  Then it takes longer to come back down from that extreme state to “normal” – the level of emotion where it is possible to cope and function and think – than it ordinarily would take.

So I think one interaction of eating disorders with personality disorders could be this.  First, the eating disorder may serve the function of numbing emotions in the first place, so that those dangerous high extremes are not reached in the first place.  Second, it may serve the purpose of bringing us down from the extreme, with their numbing, consuming, controlling effect.  It’s similar to other forms of self harm.  When I am in extreme distress and I cut, for a brief time, it deals with the emotion or makes things feel safe again because I can be sure I’m hurting myself, not someone else.

These are just my thoughts and I would love to know more about research into this.  I wonder how much there is.  I have read quite widely in my work and studies about eating disorders but have not come across very much on this topic, beyond the fact that the two diagnoses can occur together.  It strikes me that the interaction between eating disorder support services and other support services like personality disorder teams or wider community mental health teams, is something that warrants much exploration if we are to support someone not only to recover physically from an eating disorder, but emotionally as well.

*When I was in the midst of the eating disorder it frequently did feel fantastic.  I am NOT advocating eating disorders and I know rationally now – thankfully – that it was anything but fantastic when I was anorexic.  I am thankful to be recovered and for the work of specialist eating disorder counsellors and services, GPs and CPNs who so dedicatedly help sufferers.  I urge anyone struggling with food and eating to get help.

At the same time, I am acknowledging that disordered eating does serve a purpose and function.  It is a way of coping.  It is harmful, as overdosing, cutting, other forms of self-harm are harmful and risky, but it is a way of coping, just as I believe other forms of self-harm are.  I think eating disorders are a way of coping with so much more than the thought processes I have outlined here.  It is different for everyone.

I believe – and I think the clinic the two friends I mentioned work in takes this seriously – that for it to be possible to survive recovery from an eating disorder and take the next steps, treatment has to respect that eating disorders are a coping mechanism, and then enable the sufferer to find alternative coping mechanisms, for example in this case, other ways to deal with the terrifying emotions and extreme lows and highs.

Though I never was specifically in treatment for my eating disorders, I am now very very fortunate that the service treating me now is helping me find these other ways of coping, and I think that as this is the start of dealing with so many aspects of my personality disorder, it will also restore my relationship with my physical body and its need for nourishment.

Ginny x