Month: July 2016

My latest creative projects

This week has been demanding with two medical appointments, an assessment for a disability benefit I am hoping to claim, meeting with my support worker, taking documents about my changes of circumstances (now signed off from work) into the housing office, catching up on filing a massive stack of paperwork which keeps pouring in thick and fast at the moment as I am sorting out different Benefits claims, and a difficult situation in relation to my therapy group, which I’ll post more on shortly.

I’ve been really needing some calming time amid all this. Colouring is still my go-to calming activity at the moment. Also, I’m continuing making greetings cards and have got together some photos to use to make some for a friend who has requested some. It’s lovely to do them with a particular person in mind and I’m happy they are good enough that someone would actually request them.

Here is a picture I’ve just begun colouring, from a book called “Secret Garden” drawn by the amazingly talented Johanna Basford.

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My step-brother graduated last week, so I made him this little card with stars on the front, putting to good use some of the materials my friend kindly gave me for my birthday the other week:

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This week I need to tidy and organise my card materials, as everything is thrown in a box together and I am sure there is quite a bit I’m not making good use of!

I’m thankful that I have these hobbies which I can still do fairly much unaffected even when my physical health isn’t great.

Do you have a favourite hobby that helps you relax?

Ginny xxx

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Becoming like them would be worse

What a week. On Tuesday, again I was crying, asking, what is happening across the world. Every day there seems to be more violence and anger and fear and it is felt all the more as it erupts in places we thought were safe and stable. The murder of the Priest Fr Jacques Hamel in a small town, St Etienne-du-Rouvray, outside Rouen, was particularly shocking for many reasons including the fact that it shows such acts of war can happen anywhere. Loss of life is equally terrible wherever and whenever it happens and I fully hear the call of those pointing out that atrocities like this go on every day potentially unreported in areas of the world suffering indescribably more than the continent I am privileged to live in. Certainly the spread of attacks in European cities in the last month shakes us by making us realise there is no longer any way we can pretend it is something distant from us or not affecting us.

Some of my family set off today on a holiday driving through France and Spain.  I will be more mindful of their safety and praying all the harder for them than usual. I can’t imagine what it is like living somewhere that has been directly affected. Understandably, there is a call to action. Churches in the UK have all been asked to review their security systems, for example.

One part of the response that I find very alarming is the segregating, defensive, even attacking language and stance that spread quickly in articles and comments on a couple of pages I follow. I can understand the roots of this response, for example, the desire to remove the threat of extremism and restore safety and silence those who preach hate. But very quickly we risk acting in hate ourselves. In the days following Saint Etienne, I read several alarming comments calling for us to take up the crusade against the Muslim world which we supposedly “left unfinished”, saying that anyone who raises their children in the Muslim faith condones these barbaric acts, saying that terrorism spreads from anger (okay, that part I can accept) which spreads from bad education about the source of the Arabic world’s problems and to stop it we have to educate the angry young men who may be recruited by extremists that the Western World is infinitely better than theirs and all their problems are of their own making.

“By this shall all men know that you are my disciples, if you have love one for another.”

(John 13 v 35)

Perhaps I’m naive but I was shocked. Of course I am not suggesting tolerance or negotiation with extremism / extremists. However, somehow, I don’t think asserting our superiority is going to calm their anger. I don’t think responding to extremists’ war with a “holy war” of our own is a way to bring peace. Labelling a whole religion or culture on the basis of the way an extremist group twists its teachings and seeking to obliterate it, is not a solution to bring peace. Quickly we become anger and we speak in hate. We become like the aggressors that we fear.

I prefer Fr Dominic LeBrun, Archbishop of Rouen’s, response when he was leaving the World Youth Day pilgrimage in Poland to return to France the day after the attack on Fr Jacques. “I cry out to God with all men of goodwill… The Catholic Church has no arms than prayer and fraternity among men. I will leave behind here hundreds of young people who are the future of true humanity. I ask them not to give up in the face of such violence and to become apostles for a civilisation of love.”

Becoming apostles for a civilisation of love does not mean a saccharine sweet front or a return to Flower Power (!) but a genuine and often painful call to continue through pain, instability, suffering, hate and poverty responding in love – still allowing ourselves to dare to feel things other than anger and coldness that might protect our hearts, allowing ourselves to hope, allowing ourselves to believe somehow that people are foremost created for good, including ourselves.

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This applies on an intimate scale too. I apply it to my recovery from what I experienced at the hands of my abuser. That way I do not become what she wanted me to become and do not become like her.

If I give up, stop seeking the good in the little things of every day, I become isolated, as she desired. If I believe the voices, which pleases them – and pleased her – then I remain paralysed and in her control. If I shut myself away and do not speak because I know the torment that will go on in my head afterwards because of her twisted words and threats so firmly internalised, her world continues to surround me. If I allow anger to harden my heart then numb me; if I do not dare learn to let anyone love me; if I do not dare to allow my feelings and needs without punishing myself, then she wins.

“She is clothed with strength and dignity, and she laughs without fear of the future.”

(Proverbs 31 v 25)

If I keep looking out and up, I learn to be thankful for a world which teaches us constantly more about our loving Creator. If I counter the voices with God’s Word of truth and life, I become like Him. If I reach out with love wherever I see someone suffering or in need, I forget my own, and good experiences multiply and become more wonderful and more vivid than the fears. If I believe the Lord made us in His image and “clothes with strength and dignity”*, I believe first in my capacity for good and slowly may learn that I am not the evil that she so well convinced me that I am. In all I do, Lord, may “my deeds publicly declare Your praise”*.

Ginny xxx

*Proverbs 31 vs 25 and 31.

 

PS – for fellow NCIS fans…this episode sprang to mind…

becoming like him would be worse

Ziva: This country holds itself to a higher standard. It is a nation of laws which are to be followed not only when it is convenient or easy. I have seen firsthand what happens when convenience wins out.

Tony: You never talk about it.

Ziva: What is there to talk about?

Tony: [Long pause] Come on, Ziva.

Ziva: What Saleem did was bad enough. Becoming like him would be worse.

From NCIS Season 7 – “Masquerade”

PPS: NCIS property of Channel 5 and CBS; directed by Donald Bellisario and produced by Don McGill. Image – Cote de Pablo as Ziva (not from Masquerade because I couldn’t find a suitable appropriate one from Masquerade).

 

Pet therapy

I visited my dad and step-mum a while ago. They have three cats. It turns out one of them is a bit of a diva. Usually, unlike her brother who is very cuddly and lets me pick him up, she is wary of me and doesn’t hang around much to be stroked and so on. Then this time, I was taking a picture of a pretty rose when she did a purrfect “photo-bomb”:

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After this, far from stalking off when she sees me as she often does, she was delighted to sit for several minutes posing to have her picture taken:

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For some time I’ve been considering getting a pet. It would be encouraging to have something to take care of and I’m sure it would bring a lot of fun, cuddles, joy and company. I’m looking into getting a guinea pig. It’s early days yet as I want to research first how to look after them and also, look into costs to make sure I could afford it. A friend of a friend has some baby guinea-pigs that will soon be needing a home and this has spurred me on to find out more about looking after them.

I remember that when I worked at a hospice, a Pets As Therapy (PAT) dog used to come in once a week with a volunteer and visit patients in the Day Centre. They did the same at a nursing home my elderly friend was in, for a while. It was always popular and an undemanding kind of company for people who found talking harder.

Ginny xx

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

For the first time in forever

“There’ll be actual real live people, it’ll be totally strange

But, boy am I so ready for this change!”

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Yesterday was another little but notable step for me. It was my birthday recently and to celebrate, a small number of close friends came over for a bring-and-share lunch. This was the first time in a very long time I have done anything like this. The few close relationships I have are a very precious blessing to me. I never usually mark my birthday in any way and find it too embarrassing and uncomfortable. I am not used to having a home that I can invite other people to. Thankful as I am to be here, it has taken me a long time to get the courage to invite people over and this is the first time I have invited more than one person at a time. Actually, it is the first time for years I have been in a group of people in this kind of social situation, where I’m interacting with everyone for a substantial period of time. Also, it was my first attempt at a gathering where I’d be hosting and caring for everyone.

Building up to the day, I was excited and very touched that my friends cared enough to give the time to come and were spending such an effort to celebrate with me. In particular my dear friend L. was coming from over two hours away with her little girl to be here. I was also very anxious and feeling overwhelmed by worrying that I’d do everything okay, be able to make it nice for everyone, help everyone get along well (not everyone knew each other) and be able to do well enough with everything practically needed since I can’t stand or walk much right now. With everything that has happened in the last couple of weeks with work and my health, I was repeatedly tempted to cancel, but not wanting to let people down or hurt them, stopped me, and so the day came.

I was so grateful L. was there. Her presence gave me confidence and her beautiful little girl, overflowing with interest and happiness, made me feel better. L. helped me finish setting things out and without her being there I don’t think there’s any way I’d have had the confidence to go through with it.

It was a beautiful day of blessings. The food seemed to be well received and appreciated and everyone brought something to add to the meal (actually, leading to plenty more inspiration for my future Ten Dishes posts!). A lot of the simple practical things I had worried about, like whether everyone would be comfortable in my small flat where decoration and furnishing are still something of a work in progress, were actually okay. I’m very fortunate to have friends who are understanding of the time it takes to bring a home together. Everyone chatted easily together and it was possible to find common ground and interests surprisingly quickly given that not everyone had met each other before. The two beautiful children (one 9 months, the other nearly 3 years old) were adored and delighted in.

I was full to overflowing with thankfulness and the lovely illustration that people wanted to be there and cared enough to come and join in generously. The shame, worry and embarrassment I had felt beforehand was steadily taken away during the afternoon. I was struggling physically after a time and the pain was bad but I was helped and nobody was angry or expressed that they thought I should be doing more or was a bad hostess. I hope they really were happy not just saying nothing out of kindness. Mentally I felt drained and was aware that I could not concentrate as well as I wanted to, because I was “missing” things, not able to take in what people were saying or dissociating very briefly but repeatedly. However, nobody reacted as though they noticed or thought I was being weird. I wonder if they did notice or not. Were they actually being considerate and accepting of what was happening or could they not tell? I wish they could not tell but I don’t know… I’m sure they must have…perhaps I can check this with someone I trust most, like L. Nevertheless, things still seemed to be okay. I hope.

Afterwards, in the evening after everyone had gone, the pain and exhaustion were severe but I my heart was still brimming with the surprised joy of the gathering and the kindness everyone had shown. The gifts of God in friendship mean so much to me right now and help me believe things will be okay.

For now, I have several thank-you cards to write, as well as this very happy memory to think on!

“Because for the first time in forever

There’ll be music, there’ll be light…”

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Ginny xxx

Lyrics from “For the first time in forever”  from Disney’s “Frozen” as sung by Kristen Bell. (How much my little goddaughters would approve!) Images with thanks to wikipedia.org and disney.wikia.com respectively.

 

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 Very Hungry Caterpillar finds a home

I found this little guy when I was sweeping my patio. I thought he’d prefer a nice leaf to curl up on, rather than the paving stones.

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I am trying to tidy up my patio garden. It isn’t big at all – I have a patio door that opens onto a very small paved area and then a small flower bed beyond. I haven’t given this little space the attention I should since I moved in, largely as my physical challenges make gardening tiring and painful. Plus I’ve never particularly enjoyed it!

This week I’ve made the promise to start caring for it better. It is a blessing that I have this little outside space. I didn’t expect it at all and living in a flat it’s a privilege to have any garden. It’s a help for everything from being able to hang out washing to getting to sit outside, breathe, pray, ground myself in all the sensations of outdoors, and feel less isolated when I’m not well enough to walk far – I don’t have to stay totally indoors.

So I want to behave more thankfully for my little garden and take care of it and find ways in which, just maybe, I can create something pretty. It can be part of learning to give some time to creating a permanent and stable home, which I’m really not used to having, as until I came to this flat I was living between different kinds of shared and temporary accommodation where most of the time I stayed shut away in my one room, too scared of interacting with other people and too locked into my obsessional thoughts and hallucinations to leave it unless I could fulfil my compulsive behaviors and unless I could be sure I’d see no-one. I’ve had to leave so many places when I lost jobs, couldn’t make the rent, broke down mentally and was so disturbed I’d be asked to leave by the people I was living with.

Some level of security (though I’m not without financial problems) is a new thing for me and it’s hard to build on it. Any home I have, I expect to lose. Actually, for some strange reason i haven’t figured out yet, having a home and taking responsibility for it frequently fills me with panic. I feel like I’m losing control or can’t manage it, I’m out of control with everything I’d want to be in order (paperwork or cleaning etc) or other times I’m not sure what I’m scared of; something to do with I’m not allowed my safety, knowing it’ll be taken away, fears of being attacked or watched by my abuser and flashbacks associated to particular places in my flat. Having said that, I can feel safe in my home and I even have a place within my home where I surround myself with comforting and grounding things that help me stay safe when I’m dissociating, having flashbacks, the emotions are too much, and the like. I thank God for that. It’s so important for me to learn how to build on this otherwise I ignore the goodness of everything I have. Giving myself permission to trust in having security and knowing how to create an ordered home that I care for and give thanks for, is a new thing to me. I’m trying to take some little steps towards it, with my garden and trying gradually to bring more order to each room in my home.

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(Thanks so much to Cathy and her lovely blog at  https://cathylynnbrooks.com/ for reminding me how nice it is hanging out washing in the sunshine 🙂 – and as ever encouraging me so much to appreciate the beauty of the present moment in the little things. )

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

WHOOPS: An apology from this technology Dodo (…or, doh!-do…)

Erm, so, I’ve just discovered that I’ve been missing a whole load of notifications of replies to comments, especially on your blogs, because I didn’t realise where I was supposed to look for them… think this has been going on ever since I started this blog…Sometimes I get an email notification of replies and comments and so on, but often I don’t, and it turns out there were a whole load of notifications that I’ve been missing. I wasn’t looking in the right place.

I’m so sorry!! Partly it is because of the poor internet access I had until last month but that’s not entirely to blame. I am very new to blogging and I’m not the best with computers and technology especially if I’m posting from my phone.

You are all so supportive and kind and matter so much to me and I feel really rubbish that I’ve missed so many responses and not replied to you. Please accept my huge apologies and know that I am really thankful for all the time you take to write.

Hugs xxx

Ginny x