Tag: post traumatic stress disorder

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

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Walking this Borderland – You’re not going THAT way

Walking this Borderland – You’re not going THAT way

Don’t look back.

You’re not going that way.

I don’t think we should never look back. Sometimes it can be helpful to look back, analytically, or in gratitude, or recognising how things have changed or how far we have come.

Yet, I like this quotation because it reminds me that, no matter how terrible things have been and are, we try to have courage to face each day hope-fully, and to trust that even if we don’t know where we are going, each day we struggle is a day we are going on, and that God promises us “plans for prosperity and not disaster; plans to give you a future and a hope.”

Ginny xx

A super quick question about BPD / PTSD and physical pain

This is a theme I want to come back to in a longer post. I have been meaning to write something on this for a long time. For now, a very quick question, if I may.

As well as my mental health problems, I suffer with fibromyalgia, endometriosis, chronic back pain following an injury, some degree of hypermobility and potentially now a nerve pain condition as well.

I have noticed from therapy and support groups I have attended that pain conditions and joint conditions seem to be suffered by lots of people with personality disorders, PTSD / complex PTSD and/or who have suffered abuse (often in childhood). Certainly in a group I participate in at the moment, I think a higher percentage of us suffer these physical problems than you would expect to find in a random sample of the general population, if that makes sense. I have also read a couple of articles on this theme recently.

I don’t want to push people to disclose something that feels too personal so please don’t feel any need to answer. I just wonder if anyone reading this also suffers pain conditions as well as mental health difficulties? And do you find any interaction between them eg when one is worse, another also is? Or do you feel that psychological things you have suffered have had a physical impact as well as an emotional one? If anyone did want to exchange thoughts on this I’d be really interested.

Ginny xx

On panic, lemons and stitching patterns

On panic, lemons and stitching patterns

I’ve posted before about how I find that colouring intricate patterns can be very calming.

When I was an inpatient I drew and painted a few times, which I had not done for many years. I go through phases of doing a lot of cross-stitch embroidery or making greetings cards. It seems to be something that I do a lot of and then leave for a while then return to it. Sometimes I find it helpful and calming but other times, I really want to be able to do it but am not able to. If I try to push myself to, it just doesn’t work – I go wrong all the time when I try to follow a pattern, or I just can’t put together anything pretty. Then far from helping I feel dragged down lower. It’s as if when I am completely drained and lacking in emotional / mental energy, there is nothing with which to be creative. In those states I often need to sleep, or paradoxically, to do something physical like getting outside and walking.

I’ve been on two different wards as an inpatient. One of them had a variety of craft activities available and support to use them and discover and learn new ideas for projects. For example we learnt to make plaited bracelets, worked together to put together a collage display, coloured stained-glass window images, and so on. The peer support worker spent a lot of time facilitating these activities. The other ward did not really have such resources and there was nobody to support these kinds of activities. The first ward seemed much more an environment in which it was possible to focus on having hope of getting better and learning skills to cope. Of course the access to creative materials was not the only reason (I think the work of the peer support worker was very important and I will post about that separately). However I think it made considerable difference to how the days passed.

I think in working with simple materials to create something beautiful, you can empty your mind, practise mindfulness techniques, slow some of the frantic anxiety as you become absorbed in the task. The concentration it requires and the different sensations you encounter – textures of fabric and materials, sounds, colours, deciding how to combine them, perhaps repetitive and rhythmic motions, the sense of putting together something lovely from all the separate parts – all of this helps occupy your mind. In  a similar way to distraction techniques, by filling your mind with all these sensations, they can become the focus, rather than obsessional thoughts, sadness, anger and so on. It does not solve anything but can replace some of the intensity of an emotion for a time. I can find it helpful in trying to delay self-harming as well as in times of generalised anxiety or after panic attacks. My friend who suffers with an eating disorder said that in particular having something to do with her hands can calm her after eating and help her resist the urge to binge-eat and/or purge.

My clinicians explained that there is a limited number of sensations the body and mind can experience at any one time. In personality disorder, our emotions may reach a higher level more quickly and in this heightened state, we cannot think rationally or mentalise or make good decisions. We cannot see outside of the emotion. It also takes longer than it does in most people for the level of emotion to fall. One thing that can help the emotion to fall, to get to a level where we can start to mentalise, use distraction techniques or choose to do other things that help us, is to “shock” the body with another strong sensation. For example, putting your hands under very cold water, holding ice, or (this one works well for me) eating something with a sharp taste. I use pieces of lemon, or lemon juice, with a sharp and bitter taste. This can help to lead you out of extreme distress or a panic attack, to the point that you can then address how you are feeling with other techniques. Then continuing to do something that gives positive sensations can continue to calm you – for example, something self-soothing like hugging a soft pillow or wrapping up in a soft blanket, or perhaps one of the creative activities which provides a range of tactile sensations.

There is also something encouraging to me in being able to create a picture, object, etc, which is useful or attractive or perhaps can be given as a gift to someone else, even when we are really not feeling great. It’s another way to make it true that the overwhelming emotions are not all that there is and to start to hope that there could be some good somewhere in me.

Ginny

xXx

Hearing things

Hearing things

This post contains discussion of experiencing hallucinations, or sensations, which are not “really there”, as well as in very general and brief terms touching on self-destructive ideas. I put this as a warning because I am not sure whether this may be disturbing, distressing or triggering to anyone. I have discussed this very little before. Please consider not reading further if it may not be helpful to you. Thank you.

I have a question on which I would be very grateful to hear any thoughts or answers.

My understanding is that in borderline personality disorder, heightened states of emotion for a prolonged period of time can cause transient psychosis and that people who have Borderline may experience hallucinations.

A few other people I’ve met who have Borderline have shared that they experience things which I think might be termed hallucinations, for example, hearing voices, sensing presences, seeing people or things, sensations of touch, and so on. These seem to be with varying degrees of – I cannot find an adequate term – solidity? For example, ranging from the sensation of a presence with you or a sound, to clearly and specifically seeing another person in the room.

I’m frightened by hallucination experiences I have.  I know I am more likely to have them when I am in a state of high emotion. Until recently, I was more likely to have them when alone. Most commonly (I think) they are auditory – hearing someone calling my name (most commonly my mother’s voice), hearing something happening or being said again which happened a long time ago (this is closely bound to my experiencing flashbacks as part of my PTSD), hearing a voice which I am aware is in my head but which appears to come from outside of me telling me to do self-destructive things or telling me how stupid, disgusting, ridiculous, greedy etc I am, or hearing non-distinct voices but knowing that it is accompanied by a sense of pain / anger / urgency in some way. Sometimes I am aware that what I am hearing is in my head (like the voice telling me to do things to myself), but increasingly, sometimes I am certain it was in the world outside (like my mother calling me). More recently, the hallucinations are visual as well, for example, inanimate objects seeming to move or shine. I am always aware immediately afterwards that this cannot be real. Or they can be sensory – this tends to be bound up with the flashbacks again, for example, during a flashback believing that the people present when the traumatic thing happened, the people I feared, or just a non-specific sense of terror that is much more an external sensation than emotion should normally be.

These things are all intensifying. I am scared. I fear am I developing psychotic symptoms? I know my mother’s illnesses started to worsen when she was just a little older than me. Is the same thing happening to me? I would like to know, does anyone else with PTSD or personality disorder experience this kind of thing? Or even, if you are not diagnosed with a personality disorder or PTSD, have you ever experienced anything similar? How do you deal with it? At the moment I have an awareness on some level that these things I’m experiencing aren’t real. How do I make sure that I do not lose that?

I know that these are hard questions and personal questions and I understand you may not feel comfortable to answer. Anything you would like to share, I would be very very grateful for. I really do not want to distress anyone or trigger anyone in any way and if discussion of this kind of thing is not helpful for you I do not want to draw you in.

Ginny xx

With thanks for image to: http://freewallpaperdekstop008.blogspot.co.uk/