Tag: therapy

A very hard goodbye

This morning, one of the members of my MBT therapy group left, as it is the end of her time in therapy. It was her last group today. The MBT group is a “rolling group”. The group runs weekly, continously; members join (usually at least 2 people at a time) and are in the programme for 18 months, then leave. Usually, new members join to take their place and the group carries on. Sometimes new members join at other times. This means members start and leave at different times rather than a whole group doing a course together for 18 months and everyone finishing at the same time. Usually, at least 2 people would finish at the same time. It was a bit unusual that one person left alone today (someone else who would have left with them had to switch therapy groups earlier in the year).

It was a really emotional goodbye. I cried so much. A lot of us did. The depth of feeling at the point of saying goodbye was intense and in the group time passed much too quickly. At the start of therapy I would not have understood the depth of feeling for and attachment to another person that grows in group. She is a hugely kind person who has given so much more than I think she knows and I hope she does continue to know more of that good that’s in her.

I’ll write more later. Right now it feels very raw and surges of emotion are welling up out of the blue. It has been that way all week.

I need to get things done this afternoon because tomorrow I’m having a little fundraising coffee morning. It’s probably a good thing I have to be busy but I need to not push down my feelings totally either.

Ginny xxx

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I’m sorry – I haven’t forgotten you

I’m sorry I haven’t posted here or visited your blogs in quite a while. I haven’t forgotten you. I know it’s not obligatory but I feel guilty being inconsistent ams not being there for others.

It’s been a few weeks of pretty big changes in my home life, family, friendships, work (or temporary absence of!), finances, therapy – not all the changes are negative however they are all demanding and not necessarily unsettling but all taking energy to work through. Physical pain is still having a big impact on me at the moment and I’ve needed to take things much more slowly than I’d choose. It used to be something I could deal with but now I’m not coping well. I feel as if I’m constantly saying this. It’s not am excuse but it is a big part of my life right now.

There is another event I’ve been struggling with, which has held me back from blogging. I had a really upsetting experience in an internet based support group and blog, in which I had previously trusted, thinking I was finding a reliable source of information, understanding and solidarity with other members as well as being able to offer support to others. I don’t think it is the right time to go into detail here about what happened although I will explain a little more in a future post. Please don’t worry – I’m okay and safe; I was never in any physical danger and I have ceased contact that was proving damaging. Fortunately, I had never divulged personal information like my full name or contact details. Also, just to be clear, this experience was absolutely nothing to do with this blog or any of the lovely people who visit it. It happened somewhere completely different.

The experience has had a big impact on me. I was very distressed. I felt a huge loss although also a huge betrayal. I got very scared of writing anything online, including in my own blog and in messages to anyone, although that is not necessarily rational. My obsessional thoughts were very triggered and the voices got loud. A whole range of feelings and thoughts spiralled out of control about how I trust other people, how I feel about getting support or not and being believed or not; perhaps most scarily, whether I’m harmful to other people without knowing…

On the positive side, the events have brought up lots of issues I need to discuss in therapy. They’ve led me to think about how therapy is changing the way I think. They’ve shown me ways I’ve started to react differently (for example, I did not follow through the compulsion to self-harm).

Most of all, it made me all the more thankful for the genuine and compassionate support everyone who visits this blog has shown me. It’s a rare and precious thing. THANK YOU.

I’m trying to get back into writing, gradually.

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

Managing money with Borderline Personality Disorder

I am bad with money. I panic about it. I’ll panic for days beside being able to sit down to look at my financial situation. Partly this is because it’s usually so dire and it’s a constant background stressor in my mind that sends me to extremes of distress when my thoughts are in the foreground and that I block out at other times. I even find myself dissociating from it. Additionally, there’s the fact that I find it hard to deal with figures and hold them in my head and follow steps through when I’m budgeting. I always did find dealing with numbers hard, even before I was particularly ill.

However, with help, for example from my lovely support worker or my very close friend L., I can list out all my money coming in and my expenses and I can draw up a budget based on that – even though the outcome for months has been that I don’t have enough to meet basic expenses. It may not be workable but I can at least get things down on paper.

It’s very hard for me to get to that stage but that’s not the biggest problem. The biggest problem is when it comes to spending. I have been very bad with money and very impulsive and out of control and I really want to change that. I must change that if I’m to stay out of debt and all the spiralling material and mental consequences.

Even if I have made a budget plan, when I’m most ill I do not stick to it. Best laid plans to waste, as the saying goes… When I dissociate, or flip, I am no longer in control. It’s my responsibility and I don’t want to deny that but I’m not mentally in control. I make decisions and act on impulses and spend money rashly. I act on a temporary conpulsion to buy things I’d never normally touch. Sometimes I know it’s temporarily squashing down the unbearable feelings. Sometimes I’m buying a different life. Sometimes I’m buying for one of my “others” or it’s the “other” wanting and needing it and making the decisions. Often I’m too far gone to have any awareness of what or why I’m doing it and afterwards I see what I’ve bought and have only a dim recollection of why and when i did it.

Afterwards, infallibly, I feel terrible: guilty, disgusted, that I’ve been selfish, greedy, confused, angry with myself, scared, an absolutely unbearable feeling I can’t describe. There’s dread there. There’s shame – a lot of shame. There’s panic. There’s something more. Yet I still do it. There’s always the next time I lose control and dissociate and spend again. I’d call it a kind of manic dissociation that leads me to spending (it leads me to impulsively angry and needy actions too), as opposed to the frozen and numb dissociation that accompanies self harm or the safe dissociation of slipping away from this world into the imaginary one in my head. The manic dissociation is probably the most socially dangerous.

I really want to break this. I can’t stop the dissociation and impulsivity yet but I’m trying to find ways to reduce its impact. It’s become very important right now because, having had problems for nearly a year with my disability-related Benefits, with my support worker’s help we have now resolved the problems and I am due to receive some back-payment of money I should have received some time ago. This is absolutely great for me because it means that I can pay off my arrears and make a stable budget going forward and it looks as if finally I will have enough to live on! I am so so so thankful for this. It also means that I have a lot more money than I usually do (even if only temporarily til I pay the arrears). This is scary because I know that I cannot be trusted with it.

I texted my support worker straight away about the back payment and he’s going to call me this afternoon so that we can make a plan, pay the arrears and make an appointment to look at my budget again now that I’ll have a bit more money coming in. I’m hoping we can come up with some things we can do so that, at the times I’m being impulsive and not in control, I can spot this quicker and ideally, my access to money could be strictly limited at these times. I’m not sure how we could achieve that but maybe he will have ideas.

I know that ultimately I need to get to the root of what’s causing the impulsivity and learn to take back control of my actions at those times and stop the dangerous behaviour. I’m hoping therapy is going to help me find this, though it worries me I’m so far through therapy and still I don’t think I’ve changed in this area. Until I can do that I need to try to stay safe and be as responsible as I can.

I’m interested to know, if you or someone you know has Borderline, or indeed any other mental health condition, does it affect how you / they feel about money and how you / they can manage it? Is it an area you feel vulnerable or find stressful? In all the years I worked at a hospital and in the various services I’ve been seen in, it isn’t talked about very much.

Just recently I saw a useful self-help booklet at the PD Service I’m seen in, on these kind of issues. I’ll share here the booklet here later today or tomorrow (I think there’s an online version). It was about the first publication about managing finances which I’ve come across targeted specifically for patients.

Ginny xxx

 

All change…

Officially, my last day of work at the department store was yesterday, although as I am currently signed off sick, I was not actually in work. Last week I had my exit meeting with my manager (handing back my ID and keys etc) and said goodbye to my closest colleagues. I’ll be popping in again this week to say bye in person to a few people I was not able to see, and deliver some notes of thanks. They gave me a reed diffuser in a summery freesia scent, which is already providing a perfect calming aroma in my lounge, as well as a card wishing me well. I hope that I keep in touch, in particular with a few people from the department where I worked. We found a lot in common in the months I was there.

So it’s all change again now. I’m sad to leave. I’ll miss people – colleagues and some customers. I’ll miss the creativity. I’ll miss some aspects of the routine and order. I feel bad for having to go after I’d got to grips with things, received training and my colleagues and manager had put time in to show me what to do and support me into my role. They are all incredibly understanding and caring over my situation that has led me to need to leave and that helped me a lot; I still feel bad for leaving the team and leaving more work back on other people. I guess the good side of that is I must have had some confidence, in the end, that whilst I was there I did manage to do some good. Before I started this job I felt utterly useless, unable to trust that I could do any good because my previous employer seemed to find me so deficient. I see now that at the store I gained a tiny bit of confidence, as well as knowledge.

I’m amazingly anxious and I’m not quite sure why. I’m feeling it physically and feeling shaken and near crumbling and crying and really wishing someone could hold me and tell me it would be alright. I don’t know exactly what is causing this. I’m teetering on the edge of dissociating but I’m staying on this fragile edge instead of slipping over. On the edge are raw and exhausting emotions and I’m spinning and spiralling rather than falling into the safety in the hidden mist of dissociating. It’s painful. I’m trying to use my grounding techniques and self soothing and trying, if only in tiny moments, to avoid falling over that edge. Dissociating may be a relief but the pain it causes me afterwards, and others during, is even worse.

I’m trying to find the way through the next steps now that I will not be working for a while (on my GP’ s and support worker’s and others’ advice). I’m confused about all the forms I have to complete and assessments I have to go through. I’m scared of how they’ll judge me. Scared of whether I’ll manage financially. Scared of so many things that are making me feel trapped, not believed, going into the unknown…. I’m so thankful I have my support worker guiding me through, otherwise I’d implode and go back to shutting down and hurting myself out of fear and pain and flashbacks. I’m so thankful I’m not alone. I’m trying to find ways that this instance of having to leave work – because I’ve lost or head to leave more jobs than I can cope with counting, for the same reasons every time – is not yet another repeat of this cycle and is not only another failure, loss, or let down to those who have tried to help me. I’m trying to find ways I can make this different. I have therapy now. I have my doctors and support worker. I have a home. God willing I am soon going to have some more social interaction and a place to contribute something, in a mental health charity I’ve been referred to. These all count for a lot in stopping me going so deep over the edge and now I pray I can build something good from this place.

Ginny xxx

This is different, somehow

This is different, somehow

I’m feeling very very anxious today. My emotions have been shifting quickly in the last two weeks. Many of the emotions are familiar but some aren’t and the startling changes are raw and unexpected.  I feel so shaken and quickly exhausted. A substantial part is physical but a lot is emotional or mental too. Anxiety and hurt and pain but also thankfulness, feeling overwhelmed at goodness and expressions of love – from friends, for example – come suddenly and something is different. It sounds nonsensical because so much of my problem for a long time (and a big feature of BPD) is that my emotions have been so total, overwhelming, all-consuming, the only thing that seems to exist, the only thing I seem to be. Now I’m saying I’m feeling overwhelmed but it’s different. So, what’s different?

I can’t express it properly but since my therapy group two weeks ago things are shifting. I admitted in that group to strong and frightening feelings of anger and need and fear of the voices I hear that tell me I will do terrible, violent things; I admitted that since I have tried to stop self-harming I’m experiencing every feeling I so much wanted to cut off and control to keep other people safe from the evil I fear in me; I admitted how I detach and dissociate and how a lot of my needs and emotions, I only allow myself to feel through the pain of self-harm or in my escape (“imaginary”) world. I admitted I knew that  they would be horrified and disgusted at me and that I was disgusted at myself. Then something happened. The other group members weren’t disgusted or afraid of me.  Several people said that they hear the voices too and that they have similar feelings too. These three things stunned me – that they were not disgusted or afraid, that they hear the voices too, that they also have these feelings. This started to change things. It was more than a feeling of “oh thank goodness I’m not the only crazy one”. It started to mean that if these things are felt by other people too, experienced by other people too – other people who I trust and who are good and kind – then it is no longer something that means I’m evil inside or that I’m just all bad really and everyone else knows it or everyone else will be hurt because nobody could believe I was really so bad but they will find me out in the end, fulfilling my abuser’s threats.

Since then, and even more since therapy group this week, I’m feeling my forbidden emotions, without doubt. Some connection is appearing that was not previously there. The void between my emotion and my ability to be present and think and speak is closing, somehow. Before, everything was either consuming emotion, leading to explosion, violence to myself; or to total dissociation, impulsivity and non-presence then utter horror and depression afterwards and memory loss; or thinking spiralling compulsive thoughts, being unable to connect to the emotion behind them that was just too frightening. Now somehow I am starting to pray and think in the emotion, experience its presence, experience its coming and going… it’s very raw but somehow it is different from how previously the emotion was my everything, my only reality, and the self-destruction (self-harm, overdose, starvation) was utter safety. My escape world of my other dissociated identities is encountering this world more and more, whereas previously they stayed safely separate, present with me much of the time, but not overlapping with my own consciousness, thoughts, feelings, needs…. Now I am feeling what previously “they” felt. That’s scary. That’s unknown. Also, that could be good.

I’m frustrated by how very inadequately I am able to explain what’s happening to me. It seems as if I could put it together better some of the anxiety I have might reduce. I know it isn’t a bad thing and that it’s very important but I am extremely shaken and high in anxiety and needing comforting, grounding things. I am going to find it a struggle the next 3 weeks or so, because there is a break in the therapy programme for the summer holiday time, meaning I don’t have any group therapy this coming week or the next and no 1:1 therapy until the second week of August. Right now I so need someone to work with through what’s happening. I have to try to dare to call the duty support team if I’m getting bad in the meantime. I have to take the step to trying to trust them again and this is as good a point as any, I guess. Perhaps it’s also good that I’ll have to try to cope without therapy. I know part of these changes is going to be learning to experience and emotion of my own without it being understood or accepted or cared about (and indeed without me being cared for) by anyone else. I’ll have to do that in these two weeks.

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

What you aren’t allowed to admit – the shameful secret that I want to be cared for

The service where I am in therapy at the moment has suddenly (from our point of view as patients at least) changed our care coordination appointments from monthly to quarterly. Less than quarterly, in practice. I was supposed to see my care coordinator today. The appointment has been moved to the end of September. This will be 4 months since my last appointment at the start of June. This comes at a time that I desperately needed care coordination and when everything feels on the edge of fragmenting.

I am furious at how this change has been made, for myself and for other people in my therapy group. I’ll post about that next.

I spoke to my care coordinator about it on the phone and one of the most hurtful things that he said was that this has been an “ongoing clinical decision over several months” and they think this is the best way to challenge us to have more independence because instead of having a care coordinator we’ll have to take the initiative to sort out our problems. I’ll set to one side for the time being the hurt caused by having been kept in the dark, not warned, let alone involved, in the “ongoing decision”; the apparent total lack of awareness of why care coordination is needed; the assumptions about knowing what is best for us….

One thing that really really hurt and I wanted to scream and felt utterly betrayed again by the people supposed to help me and understand me was – we do not need a test, or a challenge, or to be forced to be “more independent”. We desperately need to be heard and to get help. I have been in this service since November 2014 and I am still screaming inside and falling to pieces and trying to be heard over the same issues as when I first came to the service. We have always been on our own. We have had to do everything with no help and knowing everyone will leave us. We just start to trust this service and dare to think perhaps they’ve understood a tiny bit of what it’s like, and then we get proof it was all an illusion. Never in my whole time with the service have I felt safe, been kept safe.

And here comes the thing it’s so very shameful and not allowed to admit. Sometimes – even a lot of the time – I don’t want to be independent. I want to be heard and I want to be cared for. The abused and terrified and frightened child inside me has never ever been heard or believed and has never been cared for. I have fought and fought on my own and I cannot do it anymore. I need help. I can shut up the child for so long by cutting and starving and drinking and overdosing. But there is a point of breaking. And I’ve passed it. I’ve never been safe. Never been safe from my abuser. Never been safe from what goes on in my mind, the pain, the hallucinations and flashbacks. 

I know these feelings aren’t allowed. We have to take responsibility. We have to be independent. We have to be adults. We have to function.

Is it so very wrong to want to be kept safe? To want someone to hear and know how utterly painful it is? To want someone to care for us? To want someone to stick to what they agree to and not trick us, not tell us they understand but then leave us alone when we most need help? If I am not independent is that really the most important awful thing? Why should I not be allowed the help I need because it’s so desperately important I be independent? Nobody kept me safe as a child. Nobody cared for me. Over and over again my abuser tricked me and left me powerless. The service I should be able to rely on now in my treatment, to understand and help me, makes me feel the same. In no way is it an empowering kind of being made independent. It’s being pushed away and tricked and all the cuts made deeper still.

I’m ashamed to admit it but I want someone to care for me. Before I can start to get any more ability to cope on my own I desperately need someone to understand how loud I’m screaming and how much it hurts and not to leave me, hold me and stop me from falling to pieces, stop me from losing all grip on reality because the pain and terror is so utterly consuming, hold me and allow me not to be okay. Then maybe I might be able to take very gradual steps to take back responsibility for one thing at a time. I don’t need to be tested, tricked, pushed away, not believed, not heard, used over and over again and taken to the most vulnerable desperate point then what tiny little things we hoped in taken.

I am full of anger and pain and rage at being tricked and used all over again.

G.

The pain is no longer numbing

I’m finding this physical crash really hard. I feel useless. I’m scared by the pain though I don’t know exactly why. I can’t face going outside. I don’t feel safe. At home feels slightly safer. Outside is too much and I’m tired so quickly. I’m not frustrated, I don’t think, but I do feel sad and the pain is scaring me. I don’t know why. Nothing bad is going to happen just because of the pain. What am I scared of exactly? I don’t know.

I’m sure when things were this bad last time, a few years ago, I dealt with it “better”. I got on with things better. I stayed on more of an even keel outwardly and kept going. It didn’t affect me so much emotionally. Last time it actually shut my emotions down more. The pain felt safe. It was a bit like my self-harming. It was as if, though the pain from my physical illness wasn’t self inflicted or chosen, it absorbed some of my emotions and deadened them and the voices in my head said that was safe because it stopped me being a danger to other people. I wasn’t afraid. I didn’t feel so shaky and tired and vulnerable and exposed.

Now the pain and physical disability doesn’t seem to be swallowing up my emotional being and numbing me anymore. This must be something to do with changes the therapy is working in my mind and the fact that I have stopped self harming.

It’s quite scary to admit that this change and separation is occurring. Physical pain no longer equals safe and numb inside my head and not a danger to other people.

Now in my current physical struggle I feel the fear and vulnerability and even heightened emotions. Now I just wish someone were here to hold me. But at the same time I know I have to find out how to do this when I am on my own. Because that’s the day to day. Because I can’t ultimately depend totally on another person – in the end that puts an unfair weight on to someone else and puts me at risk if I can only go on depending on someone else every moment needing them always to protect me, allow me to to feel, allow me safety…. I don’t mean that I want to be isolated or want to reject other people. I really don’t; I long for the opposite. Just I meanthat I have to learn how to exist and experience physically and mentally for myself. This probably doesn’t make much sense yet. I’ll try to explain in better in another post.

In trying to learn some kind of ability to exist alone, exist without total dependence on others, I can trust totally in the unchanging love of Our God. The God who says fear not, for I am with you; the God who loves us first so that we can learn to love Him; the God we can count on as our hope just as surely as daybreak follows the night; the God who comes into our darkest, poorest times when we are lost and delights in us as His children.  In times of pain and alone-ness His presence is often now all the clearer to me and gives me hope that even when I fail totally at simple things and fear I disappoint everyone by being able to do so little, my life is not too little for Him. He loved each one of us before He even brought us into being. That has to mean HOPE.

Ginny xxx

Crashing

This is a hard post to write.

I have not been coping physically with my job for a long time. I have really tried to ignore this. Since I started it made my pain levels worse and ever since they have kept increasing. I kept hoping it would at least stop getting worse and maybe that I’d get better at coping with it. I wanted to be able to do it. Be some kind of normal. My job sometimes helps me mentally, engaging in something creative and focusing on helping customers and giving the best service I can. It takes my focus outward which I’ve long believed is really important in staying well. The tactile aspects of my work, handling the different fabrics and trying to create attractive displays, can in themselves be grounding and soothing. Additionally, it’s an area where I can try`to do some good and not feel useless. (I know that’s something I need to work on, how connected my sense of worth is with others’ outward perception of me, but I can’t deny it helps for the time being.)

Now I’ve come to the point of crashing completely. In the last 3 months in particular my pain and physical weakness has increased faster. Since around the time of my operation I guess marked a real down-turn physically and it was to be expected really that  my fibromyalgia symptoms will be worse for a while afterwards. Everything is worse really, my back problems (I had a slipped disc years ago), arthritis…

I know I haven’t really talked about it so maybe this sounds weird. Whenever I talk about my physical health I worry it all sounds stupid, nobody would believe me, I’m a fake and I should just get on with it and everything’s my fault. (There’s a lot I have to work on there too, I know.)

I feel like I’ve crashed suddenly. Gradually it has got harder and harder to – move, to put it bluntly…  Getting harder to get through the day….harder to be able to get home, having to sit and rest, and crumpling as soon as I get in, lying down most of the evening… Today I have had to spend most of the day lying down. Pain and shakiness in my legs makes any standing and walking really hard. My legs are cramping and jerking out of the blue. I can’t feel in my right foot normally and at the same time the pain is really bad through my lower back and hips, worst on the right… I’ve had all this before although not as bad, but I am very scared right now. I feel scared and shaky and lost and so tired. I slept a lot today too. My support worker came this morning and I was so tired I was struggling to literally get words out.

So I find myself admitting again that I am probably going to have to leave this job. The physical deterioration from trying to meet its demands is too much. I have tried to look into reducing my hours but it does not look as though this will be possible. I;d have to massively reduce them in any case. My manager has been kind and understanding in her approach but has to follow the sickness absence procedures set down by the company. Since I have been off sick 4 times within a 6 month period, this is flagged as a problem. I can well understand that it is not fair to colleagues to be off too frequently and I know myself that I am struggling more and more with daily tasks, which is increasing my anxiety and in turn my psychotic thoughts and my fears about what colleagues are saying and thinking about me and making it harder to cope with the hallucinations and all the mental struggles of every day.

Outside of work the effect is great too. Not only are the pain and mobility problems an issue, but I have no energy or coping resources left to manage day to day tasks like keeping my house clean, keeping in touch with people, doing positive things to bring a balance to life outside work, or perhaps most importantly right now, giving the energy to therapy and recovery that I need to. The months I have left with the PD service are precious and working on making use of my individual and group sessions is demanding. I want to be mentally “present” for it, not shut off protecting myself because I’m desperately trying to cope with pain and utter exhaustion.

I’m going to be referred to Occupational Health so I await to see what they will suggest.

ergonomic occ health

I also have to follow my doctors’ and my support worker’s advice. I believe they would all prefer me to reduce my hours. My support worker definitely thinks so.

The one thing that ironically, in a twisted way makes this situation possibly not quite so bad, is that I may actually not be worse off financially working fewer hours or not working at all. I want to talk about this more in a separate post shortly. It’s a bizarre situation that doesn’t sit well with me. At the moment I am struggling in pain and making myself physically worse every day, working part-time, earning just above the minimum hourly wage.  I receive less than £10 per week help towards my rent, I am not entitled to any help at all with things like council tax*, and although I was initially assessed as eligible for a small amount of tax credits, this decision has now been changed and I have been told that I am not entitled to any.  Now, I strongly believe that it is morally right to work as much as I can and not to expect to receive handouts when I could be earning myself. However, what I cannot get away from is that on my current earnings whilst I am working as many hours as I can (well, I have to admit now, more than I can) I cannot live. I do not have enough to cover basic bills and simple living costs and I would not be getting by if it were not for regular help from my family and even occasionally my very good friend who has lent me money for grocery shopping when money has been tightest.

Not only can this situation not go on – I am over 30 now and I simply cannot go on needing financial help from my dad; I have to support myself – but the cost of this job physically is just too much to go through to still not be able to live. It is painfully ironic that because if I were not working or were working fewer hours, for example for a few months or so whilst I complete my therapy, my financial situation would actually be more stable because of the greater help I would get towards rent and living costs. That makes me really really uncomfortable and it isn’t right. Yet I have to be able to live.

It isn’t the main factor that has led me to this point. If I were coping physically I would keep going and if I could I would see if I can increase my hours. But I’m forced to accept that just isn’t so and physically things are not good right now.

I feel really worn out and vulnerable right now. The last time I was so low physically, about 7 years ago, I didn’t feel so afraid or sad. I wonder why that change has come. Perhaps I feel more responsible now. Perhaps I am sadder about potentially leaving my job because there are aspects of it that I genuinely like this time. Perhaps I feel more of a failure that this has happened again.

I need to focus on the good things that could come out of it if I do have to leave. My health problems are not life threatening or anything that serious and so many people are going through much worse, much more medically severe, perhaps without friends to help them and understanding doctors. In moments I can see that there can be ways that in the next few months I can try to turn things around.

I don’t want anyone to feel bad for me. Tonight I just needed to get all this out and admit that I’m scared.

Thank you for listening. I can’t imagine where I would be right now without this blog and the support of you lovely people who read and care and comment. There’s so much more I should say on that. I hope you know how much you mean to me. Hugs xxx

Ginny xxx

(*apart from the 25% single person occupancy discount. For non-UK readers, council tax is a roughly monthly fee payable towards local government spending like policing and other emergency services, refuse collection, some elements of care for vulnerable people, etc. Most working adults pay council tax. The amount payable depends on the value of the property you live in.)

Image not mine, sourced on the ever useful Google – I am afraid I do not know the artist (it says in the top left I believe but I was not able to expand it to read it.