Category: Hallucinations and Real or Not Real

Unenchanted April

I have wanted to post but not been able to find what to write. I’m sorry it has been nearly a month. Even this post I started nearly a week ago. I don’t know quite what’s making it so hard to express how I really am.

My friend’s health continued to deteriorate. I was fighting desperately to get him help as the danger he was in increased. Everyone in a position to keep him safe seemed oblivious to tune dangers and I could see how close he was to the edge but with no professional’s help I could not do anything more than what I can as a friend and that is not enough. It’s terrifying to be the only one knowing and believing the risk and I know that sounds like I am very arrogant thinking I know better than the doctors, but time and time again now I’ve known what’s happening or going to happen, the doctors have done nothing, refused even to listen to my concerns, and the thing I’ve known will happen, happens. The toll is greater each time. He has liver damage, blood clots, he’s starving himself, he is barely even drinking anything, there’s much more I wish I could write but it’s too personal to him for me to feel I can share here.

I don’t know how to carry this knowing.

I cannot save him alone. What someone else can give you, or trying to carry on for someone else, will not ultimately be enough to keep you safe or even alive. (I know this from my own darkest times, when I’ve been irretrievably low, hurting myself and planning to end my life, and someone close to me – who didn’t know the half of it – screamed at me, look what everyone is doing for you – why isn’t this enough for you? The answer is a post for another time but I know if he continues it must not be for me, not just for me in any case, so I alone cannot save him.

I can pray. I can try to give comfort. I can try to give compassion. I can try to show I love him and that he’s a good person not as he sees a problem, a burden, someone who frightens people, is bad, is not wanted, is no good. I can try to help him find some ways to build a safe, stable home and life. We can find short times of hope, happiness and laughter together. He has an immense capacity to love others, care for them and about them, to rejoice when they are happy, to fight to help them when they are hurting and share their pain. But none of that can he do towards himself.

He may die. He may end his life. I don’t know how to hold this knowledge and all the feelings that come with it.

****

I have been in crisis myself in the last few weeks and was in hospital for a couple of days. Then I had help from the crisis team at home for a week. When crises come I still flip out and instinctive reactions and thoughts take over along with the hallucinations just as much as they ever did before I had therapy. My “little child” gets out and she really isn’t very nice sometimes. It’s scary. I feel like a failure.

***

I’m realising that my mobility has got a lot worse in the last year. I’m particularly weak physically at the moment. I was diagnosed with POTS a little while ago (a heart, blood pressure and autonomic nervous system disorder). I’ve a lot to learn on how to manage the symptoms. Being very faint, muscle spasms, digestive problems and poor circulation have been hard to deal with this month. I’m now very fortunate to be in touch with a pain clinic at the hospital and there are some good possibilities from what they can offer, so I must be hopeful.

I really will try to post more regularly again and share happier news next time.

God bless you.

Ginny xxx

 

The wrong voices calling

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

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

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

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

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

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

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

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

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

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

Ginny xxx

Getting ready for the day centre – trying to keep reaching out

I’ve had a really bad dissociative episode this weekend. After therapy group on Friday my mind just shut down and didn’t even seem to slide into my safe escape world. I was frozen and gone and my body wasn’t working either. I think I slept quite a lot and several times was locked into hallucinations, conscious but unable to move. This afternoon I started to be “here” again though I’m longing to escape into sleep. Every movement hurts so much. Returning from these episodes is scary. I’m fighting through fog to speak to anyone and I’ve lost so much time. Where have the last 2 days gone?

I forced myself to go out this afternoon and bought supplies I need for volunteering at the day centre tomorrow (I go every other week to do craft activities with a small group of elderly people). As I was leaving, I bumped into a neighbour who wasn’t well so I picked up a couple of things she needed too. This evening I’ve been preparing for tomorrow. I am dreading it and don’t know how I’ll be able to leave the house, I feel so bad. I feel guilty for dreading it because they need me at the centre and all the elderly people there are struggling with far worse than I am. By God’s grace the harder I have to force myself to go, the more love I will put into it, and in my weakness He is strong and He will lead me.

Tomorrow at the day centre we are going to make mini Christmas trees from empty squash bottles, tinsel and decorated card, and make stars for the top from felt and pretty buttons. If there’s time we’ll make paper stars (or snowflakes). Here’s one I practiced making with scrap paper just now. They’ll look much prettier tomorrow made from glittery paper.

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I thought it would be nice for people to have ornaments to take home. I particularly like the star because you can start with scraps and still make something pretty. It’s a bit like what I’m trusting in God to do with my life – bring something beautiful from the mess of my heart.

Ginny xxx

Emotional flashbacks – Lilly Hope Lucario

It seems very providential that just after writing my post, Really Bad Day, where I talked about re-experiencing emotions and recognising situations that put me in the same emotional state and behaving according to the same patterns as when I was abused, and feeling shock for things that happened a long time ago, I then came by a blog post by Lilly Hope Lucario on emotional flashbacks.

You can read her blog post HERE. Further, Lilly’s website about healing from trauma, post traumatic stress disorder (PTSD) and complex PTSD (CPTSD) can be found HERE.  This material is created and written by Lilly Hope Lucario and all rights belong to her.

I’m very new to her blog and it looks as if she has some fascinating material that’s going to help me a lot in understanding what’s happening to me. The concept of emotional flashbacks certainly goes a long way to explaining emotions I experience that I may be afraid of, or that seem too intense, shameful, inappropriate, or not warranted by a certain situation. I know that learning to accept my emotions and sit with them rather than exploding or doing something harmful to numb them is a whole separate issue of its own. But I think identifying when emotional flashbacks are happening is a critical part of understanding the extremes of feelings I get in my BPD and my consequent behaviour patterns.

Thank you Lilly! I think I’ll be visiting her site often!

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.

One of the most dangerous ways to react to someone with BPD who is asking for help when they are suicidal or self-harming

 

 

TRIGGER WARNING: fairly massive warning on this one that this post discusses suicide and self harm and issues around getting care in crisis…

Yesterday I was met with one of the most punitive, ignorant and dangerous reactions I have had from a medical professional. I wonder if people who react like this actually do not realise the genuine danger patients are in and how much further into danger this kind of reaction pushes us.

As I write this post I want to be clear that I am now safe and have received help and I am not posting this to alarm or worry readers about me. I’ve been seen in emergency services and eventually had very supportive care, which I will post about in due course. Please don’t panic about me. I am now safe and have had help. I just think what I experienced earlier is a massively dangerous issue that needs to be highlighted.

Yesterday I was absolutely unable to cope. The pressure of my housing situation, financial problems, threat of losing my flat, trying to discuss things with my landlord, my physical help, repeated errors from benefits services and other supposed sources of support, the lack of help over the past 5 months or so when I’ve been at my lowest points, the voices and flashbacks and nightmares – everything boiled over and again I was in the place where the pain and emotions and loss and guilt blocked out any ability to carry on.

I lost it and I was at the point of trying to end my life. I knew how I was going to do it. I had tried and tried but had nothing left.

I spoke on the phone to the GP Surgery. Somewhere, I guess some part of me was still wanting some kind of help or at least daring to tell someone. (They had called me over issues with a mess up over the prescription i should have had; I’d again been left without my medication. ) I admitted what I was feeling. I begged to see someone. I don’t know what made me do that, ask for help when the decision was already made in my mind that this was it now and I’d come to the end. But I did.

I admitted that I wanted to end my life and that I was self harming. I admitted that I had the tablets to overdose. I asked to be seen and that I needed help now, could they see me or get the crisis team? I said how all the mess ups with my prescriptions and benefits and no help in crisis were piling things onto me and making it more and more impossible to cope. I was having hallucinations and flashbacks. I had been asking for help for months. Now I could not go on anymore, I was going to end it. I needed help.

The GP spoke over me from the start. She told me that “you have to be extremely careful about how you are coming across” if I expected to get any medication. She then told me repeatedly, in response to me admitting that I was suicidal and self harming, that “that is not a fair threat to make to people” that “you will find I do not respond to threats” and that I am a responsible adult able to make my own decisions and there is no reason that I should take an overdose. She then announced that she was going to end the call and hung up on me whilst I was begging her to help me.

If Someone with Borderline, or any other mental health problem, admits to suicidal thoughts, plans or intentions, or self-harm, it is the most incredibly ignorant and dangerous reaction to treat them as though they are making threats in order to manipulate and must be punished accordingly. The stereotype that people with personality disorders or any mental health problem are manipulative, or that being suicidal or struggling with self-harming  is attention seeking,  are extremely dangerous. It is all the more dangerous when it is trusted healthcare professionals acting on the basis of these stereotypes when their patients have dared to ask for help, meaning that when we are in immediate danger we are dismissed, punished and rejected.

Experiencing suicidal thoughts is not attention seeking. Self harming is not to create drama or cry for attention. Admitting that you are in danger and want to end your life, that you are absolutely at the end of the road and can’t go on, that everything being piled on you is pushing you nearer and nearer the edge, is not making threats. The attitude shown by the GP today makes it impossible to ask for help when we are most in danger. I now know that if I admit to the terrible thoughts and feelings, I’ll be treated as though I’m manipulating people and will be rejected. If patients are treated like this, suicide and self harm is made something that must never be admitted to or talked about and for which help can never be sought. If patients are treated like this, all the feelings and events that have brought them to the point of suicide are dismissed in an instant, as our position is made out to be manipulative fabricated threats rather than complete brokenness.

Yes, I am an adult. Yes, I am responsible for my actions. If I self harm or attempt suicide, it is my action alone. If I cause myself harm that is done by me alone. That does not mean that the experiences and emotions behind my actions are not real, that I am not in danger,  that I am fake. No longer being able to carry on doesn’t mean I am manipulative. Asking for help and admitting to the horrible things in my head doesn’t mean I am making threats. Asking for help doesn’t mean the feelings that make me want to end it aren’t real. The fact that if I do something to hurt myself, it’s my action, doesn’t mean I’m not in danger and don’t need help.

I’m terrified of manipulating or hurting people I care about. That’s why I hide my self harm and did not tell anyone for years, why I usually don’t ask for help after overdoses… I’m scared that people may feel responsible for saving me… and the self-harm itself started in order to punish myself and hurt myself to turn it all in and not let the horrible things in me hurt anyone else, and overdosing  is sometimes about utter pain and sometimes utter rage and loathing at myself and fear of who I’ve hurt.

People who are self harming and/or on the point of attempting suicide are not nasty manipulative frauds, they are in massive pain and massive immediate danger. They do not need punishment and dismissal. They need a place of safety and compassion and they need desperately for the hurt and the danger they are in to be believed.

It is terrifying to admit to things like how close you are to suicide or that you’re overdosing. I never say it to friends (though two friends have sometimes guessed) because I do not want to make them feel responsible to keep me safe or worried I’ll do it again. That’s one thing.  But it has to be possible to admit it to healthcare professionals, if there is to be any way to get help.

Yesterday, my life was saved by a police officer who recognised the danger I was in, and by the emergency team who assessed me when he took me to them, and by the mental health workers at the safe haven I was taken to. I owe them my life. Thanks be to God.

The safe haven is a new organisation that has been running for just two weeks in my local area and I think massive good is going to come of it. I’ll post more on that going forward. Please God can that be the support other people find when they are in the state I was in yesterday, not reactions like the one I got from my GP. Sadly I think I’m not alone in what I encountered. And this isn’t the first time. I’ve encountered similar and worse lack of recognition or response to the danger I was in, and accusations of making threats or being manipulative,  from within the personality disorder service and in crisis teams.  If i am ever recovered enough to be able to somehow try to help other sufferers or explain to people what BPD is like and how to help someone in crisis, tackling this would be a massive priority for me.

Ginny xxx

My rescue box – update

A while ago I posted about making up a “rescue box” as a tool to help me cope in times of crisis. You can read more about the principle and how the box helps here and I’d strongly recommend reading that before reading this post. In brief, the Box is a way of putting together in one place, easily visible and quickly accessible, the things that will help you cope when you are feeling bad. For me feeling bad tends to mean very upset, crying, struggling with voices and other hallucinations, and re-experiencing traumatic memories. The Box is not a cure for how you are feeling and is not meant to make the emotions go away. It isn’t intended to be a way to suppress them. Having said that, it is to some extent distraction, and a way to access tools to lower your very heightened emotional state so that you can then be more able to cope, to think, or to avoid impulsive actions that may be harmful to you. The CPN who explained the idea to me recommends it as a tool for BPD sufferers. I would imagine it could help people dealing with a variety of other situations / conditions too.

I promised an update about my box once I had put it together, so here goes. I’m new to this technique and I’m sharing updates as I go along.

I made my Box by covering a cardboard packaging box in gift wrap. I’ve started to stick some pretty things to the outside of it as well – a flower, some Hello Kitty stickers because they make me smile, a few little snippets of encouraging text – and I’ve put a little plastic pouch on top with a pretty card and a message from a dear friend. I’ll continue decorating the box with more sensory, pretty, attractive things and things that have a meaning for me and remind me of good times. I think this increases the likelihood the Box will be in my mind and be an appealing thing. (Half the problem with coping strategies, I find, is remembering to use them when the hard times come – often the distress can be so consuming I just don’t think of how to access helpful tools and techniques! Anything that helps me call them to mind has to be a plus!)

rescuebox

The contents of the Box is very much a personal thing, of course, as different things will be important to each of us. In case it’s of interest, here are some of the things I keep in mine (you can see them in the picture).

  • A couple of little stuffed animals – I’ll freely admit I am very childish! 🙂 I find them comforting and have quite a collection. To be honest, Bunny is usually next to me on the sofa, not in the box 🙂 and I collect “ty” Beanie owls and my-little-ponies. I guess stuffed toys also give a soothing tactile experience when you hold them, which can be useful for BPD sufferers. As a soothing sensation increases, the unpleasant sensation of very heightened emotion may reduce (again, I explain this better in my earlier post).
  • For similar reasons, a little bottle of scent. It’s soothing and distracting and if you are trying to control your breathing, the pleasant aroma can help you be aware of exhaling and inhaling.
  • A coaster, to remind me – make a soothing cup of tea! Drink it really focussing on the warmth and taste.
  • A special smooth, flat pebble from the beach, which is calming to hold (feeling the cool, polished surface) and which reminds me of the happy day on which I collected it.
  • A CD – at the moment it’s a CD I like with songs that lift my mood. This is a new one for me to try and I’m not sure which way it will go. When I am not in crisis, I enjoy listening to music. Putting on particular kinds of music and even dancing to it (well okay that’s a strong word – bouncing, at least!) can really pick me up. I’m not sure what kind of effect listening to upbeat music when I feel absolutely dreadful will have, but I’ll give it a go! It’s a way of trying to take an “opposite action” i.e. forcing yourself to do something “happy” or good for you when you are feeling sad and bad about yourself. The idea is this may in turn lift your thoughts. So listening to happy music and making myself move around to it might help lift my thoughts and feelings. Equally, at times music that expresses some of the anger or sadness I’m feeling can help as a way of “letting it out”.  I think I am going to trial both and then put together a playlist of favourite tracks specially for times I’m feeling down. Good job I live alone so there’s nobody to suffer for the fact that if I sing along I sound like a mouse with a particularly bad chest cold 😉
  • A favourite book I know well, which encourages me at the very hardest times, and some prayer cards with very short prayers. I can read over passages of the book, or say the prayers in my head, to repeat a hopeful and loving message to take the place of spiralling panicky thoughts, or the voices I hear telling me that I’m evil.
  • A few cards and a pen, to remind me – could I write a note to a friend? I.E., something nice to take me “out of” my own mixed up head, to force myself to do something positive, thus acting against the negative thoughts in my head, and making somebody else happy too?
  • A ball of wool – could I do something creative? Make pom poms? Do some cross stitch embroidery? Colouring?

I’ve tried to include a mixture of things that are happy and soothing of themselves (eg the stuffed animals, the scent) and things to encourage me to do something positive (eg the cards or the music). I’m also going to add to the box some pictures of my family and my close friends and my godchildren, basically people that matter to me, as a reminder of reasons to keep going and all the good things and good times that I can be thankful for – all things that can so easily be eclipsed in times of extreme distress.

So, that’s my Box! I hope perhaps this might be of interest…. I’m new to this and I will post another update about whether / how I find that it helps me.

Do you use any kind of toolkit like this to help you in the hard times? What would you put in your rescue box?

Ginny xxx

 

Did I actually just enjoy something?!

Since I came back from my lovely weekend stay with my friend L and her family a couple of weeks ago, I’ve been thinking back to it thankfully and often. In that weekend I felt genuinely positive emotions that have been absent for me for a long time (we’re talking years). Things like happiness at my goddaughters’ interest and excitement at our little activities and projects.  Their unboundedly curious questions showing perspectives so different from mine, especially different from my exhausted autopilot. Time with L. and real thankfulness for the strength and comfort her non-judgmental empathy gave me and really wanting to be there for her too, glad to be able to talk and share in her life, worries, joys, and so on.

Yes, the hard things were still there too. Voices, doubts, exhaustion, anxiety, it doesn’t magically go away. But the good experiences were so unusual for me that they particularly give me pause and I am all the more grateful for them.

Their good is lasting beyond the days I spent with L (nearly 2 weeks so now) in a way that’s more than just a happy memory. Perhaps it’s because it isn’t just a memory in my factual thought; it’s an emotional memory too. That’s stronger and more active and has a more continously creative effect on how I feel. I’m enjoying it and trying to nurture it, in thought and in prayer and in trying to build up some more creative, good experiences, especially where I can give or share something to someone else in even a small way. One thing I’ve been doing in recent days is making greetings cards, which I used to love but had completely lost all motivation or creativity to do. And I’m actually enjoying it, even looking forward to it. I can’t think when I last genuinely looked forward to an activity like this.

Maybe I’m starting to understand what a doctor told me when I was an inpatient in 2014 – that the more good experiences and memories you create, they can slowly begin to replace the terrible re-experiencing of traumatic past events and the automatic nature of obsessional thoughts and the power of the voices. I could not understand how this could work at the time though I really wanted to believe it. Later, in the most desperate times I was furious if anyone began to suggest anything like it. The suggestion seemed to trivialise the terror I was locked into. Yet now, I think I might be beginning to understand it.

Ginny xxx

Trying to be curious about trust #1

As you may know if you stop by regularly ( 🙂 thank you lovely people!!) I’m finding it very hard to trust the personality disorder service at the hospital (where I go for therapy) at the moment. It has become harder and harder over the last few months, in part due to repeated occasions where, in my experience at least, I’ve been let down, not had the promised support, or been turned away when in desperate need of help. I feel they do not believe me and do not think I deserve help and the more I’m in crisis the more they don’t believe me. Everything that happens confirms this now. In my last care coordination appointment I felt again completely dismissed, not listened to and that what was recorded on my care plan did not reflect what I was going through or needed, until I’d insisted time and time again that my care coordinator write what I actually said rather than re-phrase it in a way that minimised and avoided a lot of the issues at stake. Aargh….

I can’t explain it more than this right now because I will get so angry and out of control. Plus you’ve all probably heard me go on about it so much you’re bored 😉 ! Sorry.

I’m trying to be curious about my feelings about trusting the service and how they see me, as Mentalisation Based Therapy focuses on this and trying to be curious and open to different feelings and uncertainties about what is in our mind and other peoples’.

Right now, although I can try to examine different possibilities, I’m certain in my heart that the service don’t believe me. This doesn’t apply so much to my 1:1 and group therapy sessions. In some way the group feels honest and safe. Perhaps it’s something to do with my commitment being to the other people in the group, listening to them and being there for them, present with them, and sharing honestly as much as I’m able, rather than it being a relationship just with the service or the therapists. It applies more to when I need support between sessions, or when I’m in crisis, or talking about support outside therapy with managing daily life, or in my care coordination appointments.

After the experiences I have had so far, I am not sure what would now reassure me that they did and do believe me and do want me. I got on to thinking about how my recent falling out with a close friend N. involved my absolutely unchangeable feeling that she didn’t believe me, didn’t really want me, didn’t think I deserved help, and I was just a burden and irritation. I don’t know what would convince me otherwise (except, just perhaps, if she had come to help me when I was at my worst, in some of the times she was adamant she could not or should not come).

Not being believed and not deserving help is a big theme for me. Ultimately, I do it to myself too, because I can’t really believe myself. Some of my psychotic symptoms feed into that, with the voices in and outside my head telling me I’ve lied, I’m a fraud, that everyone knows and is thinking and saying I’m a disgusting fraud, cheated people to get help, and no matter if I may think I want to be good and try to do good, there’s all the bad things in me really and everyone else knows and I’ll hurt everyone in the end. Only self-harming in some form quiets this.

In my last 1:1, we talked about my recent falling out with N. We started going slowly through my feelings and thoughts step by step from the beginning of the day things really fell apart between us. We didn’t get very far through. Nevertheless it brought back a lot of the feelings of that day. I’d been feeling very bad about things I said and how things were left at our meeting and in our exchanges the week after (since which, we haven’t been in touch – I couldn’t anymore and felt she didn’t want to either, really). I’d been trying to write to apologise. But in the 1:1, what was even harder than this was that guilty as I felt (and still feel), a lot of the hurt is still there too.

As the memories of these feelings, and more of the feelings, surfaced in the 1:1, I suddenly felt sure that my therapist must think I’m a horrible, childish, needy, jealous, selfish, demanding, nasty person who thinks terrible things about people. Then I started thinking these things about myself together with feeling guilt, disgust that I was so evil, and worry about what would happen to my relationship with my therapist now she thought these things – I couldn’t say what I thought would happen at the time but now I think it was feeling that, oh now she’s started to realise that I really am bad after all and she’ll leave me and not want me around any more.

I was certain about what my therapist must think. Just as I was/am certain about what N. thinks about me. It was actually very hard for me to think curiously about what N. (or my therapist for that matter) would feel. I spend a lot of time certain and horrified about what the people I’m interacting with think about me, and feeling bad for what I am (because of what they’re thinking), what I cause, and the feelings that are then in me, confirming my self-disgust and self-hate. My self identity is somehow, in a way I can’t yet express properly, bound up with what I am certain the other person is thinking about me. My own feeling follows immediately being so certain of their thoughts. I am not necessarily at all able to access beforehand what I am feeling, and I am not necessarily able to think about what the other person is feeling (separate of me, as opposed to being convinced about their thoughts about me).

I am not necessarily bad at picking up what other people are feeling. Actually, I can be very accurate in it, and sense it before other people do. I’ll post about that separately and will put a link here when I’ve posted. However, in these situations, I’m entirely sucked into the certainty of their thoughts.

I am not at all able to “mentalise” – to reflect and be curious about what is in their minds and what they are feeling and what I am thinking and feeling. There is no possible questioning or genuine entertaining of different possibilities about the other person’s mind. I am absolutely certain of their thoughts about me and I have absolutely certain thoughts and feelings as a result. Even though I may at some level be able to come up with a distant idea of other possible thoughts that could be in the other person’s mind, it is completely disconnected from my beliefs and emotions.

Written down like this, it is quite easy to see that this could lead to or be part of my psychotic experiences. I am certain of other people’s thoughts about me. The voices repeat them to me. I feel disgust and guilt and horror of what I’m doing to people. Somehow I become linked with the thoughts I think the other person is having and I am all those horrible things.

I am starting to wonder whether I am actually having the thoughts (which I attribute to the other person) myself, and having the resultant feelings myself, but I am unable to recognise them or feel them in myself, and then for some reason attribute them to the other person as though I know for sure that they are thinking these things. Really they are just my own thoughts or feelings about myself.

Perhaps my certainty nobody believes me or wants me and my resultant inability to trust, is in fact simply nobody else’s thought but rather just what I think of myself – and the fact that I cannot trust or believe myself because I always doubt my own motivation for good or evil, because I have no identity except what I find in what I think are others’ thoughts.

I don’t know quite where this came from. Certainly my mother’s very unwell beliefs about thoughts and emotions during the time I was growing up, clouded my learning about my and others’ feelings and thoughts and the demarcation between them. Her deeply psychotic beliefs were pervasive and persistent. She believed that I knew exactly her thoughts even in advance and when I did not, she told me this was deceptive; she believed she knew my thoughts and intentions; she frequently presented to me my intentions as malevolent and manipulative in incredibly complex ways, when I was unaware of any such motives or thoughts (precisely because they didn’t exist, but I didn’t know that as a child); she made inconsequential, morally neutral actions (such as being able to do some particular thing or not) have a moral value or manipulative power (“repeatedly punishing her” for example); she perceived my emotions as controlling her and done to her (unless they perfectly matched hers); and this was coupled with dire threats (including her suicide, my father’s death, the family breaking apart, my parents being taken away) because of my emotions and thoughts – and of course, with the abuse.

I don’t know quite how to unpick that to find out how much does it explain how I now feel about others’ thoughts about me. Maybe I don’t need to and just need to find out how to change my certain, set-in-stone thought patterns now.

Oh my days I’m tired now and I need a hug. Think I’m going to have a hot bath and curl up under my blanket when I get home.

Ginny xxx

Lonely, lost and loud

This evening I think I feel lonely and alone. Sometimes I’m not sure of the difference between those two feelings. Alone is isolated and separated and not belonging, not-empathised-with, not wanted even. Perhaps lonely is more without others, wishing for someone.

Since my close friend and her husband and I are no longer in contact at present, I have almost no interaction in person with anyone outside work, no genuine meaningful interaction at least, beyond exchanges in shops or chance meetings with acquaintances where the front must stay most securely up. That’s a selfish and self-centred reason to miss her, but it’s true, as well as missing her tenacity, determination, energy, faith and curious perspectives; her surprising kindnesses.

I do not know whether or how to try to repair our relationship and whether to expect her in any way to cope with me now, would be fair or something she’d want. She’s said and done things that are clear enough to me that our friendship had no goodness, enjoyment or happiness for her and that it had a lot of frustration, irritation and just a sense of obligation. If she were in need of someone or something of any kind, company,  help, happiness or prayer, I know I’d be the last person she’d choose.

I’m hurting and longing. I’m asking God to give me strength to turn to His Word and stay close to Him, who gives all we need and more and pours love into our emptiness.

I’m trying to make each interaction with anyone, down to the most seemingly insignificant, a chance to give my best – caring, patience, a smile, a warm response. Doing these things outwardly, perhaps my heart that’s hurting and cold right now may be changed.

It’s loud in my head today. It’s been a day of doubting and checking everything and a cloud of trepidation telling me everything I’ve done wrong and every way I’ve failed. Every comment and criticism ridicules and mocks me, cutting deeply. It feels like being surrounded on all sides. I actually startle easily and feel someone is following and watching me; I hear whispers of anger and disgust and voices pulling me apart – and my mother’s voice.  It’s like I’m stumbling on a jagged path where there is too much mist to see where it will lead. I can only see as far as a very few steps ahead. But I must keep walking on this way because either side is thick darkness, trees and unknown beings with branches or arms that would enmesh me, surround me and call me into deeper night that would obscure all hope. The path turns and does not follow the expected course and I have no idea where or if it will end. Often it twists and seems to lead me deeper into the forest, the branches clutching closer and the voices louder. I cannot retreat because behind me,  somehow, the path has fallen away. I can only stay on the path unfolding gradually before me, the rocks mark out the way, and I try to walk forward through the mist.

I wonder how many others may follow a way such as this and whether we may be nearer to each other than we know.

Ginny xxx