Month: January 2016

What do you do “out of hours”?

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

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

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

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

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

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

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

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

Ginny xx

Hurting tonight

It hasn’t been a great week.

Hurting with physical pain from gynae problems and joint problems.

Going between guilt for worrying and burdening my family and not being able to do what I should, and feeling cut up that I’m “in the way” to them and need to be compartmentalised so I don’t intrude on their life – the part of it they actually want not just feel obligated to do.

Seeing far too many things. ..scary things. ..that aren’t there… that are hallucinations from memories that grip me and shake me.

Wishing someone would hold me and tell me it would be alright even when the flashbacks come.

Working through water or a fog each day and knowing I’m getting it wrong and doing wrong and so so tired.

I slept about 4 hours tonight if that. Tomorrow is group therapy again. I am so scared to go. I will go because I mace this commitment to everyone in the group, the therapists, and to trying to get better, to God, and I won’t throw away what I’ve been given. But I’m scared. I don’t know where we are, I don’t know how to be, I don’t know who to trust, and I can’t trust what I did trust or where I thought we were before. Everything unraveled last week. I wish I need not speak. I wish I could just sleep and stop it all.

I will try to go forward thankful. I will ask thankfulness for another day, to learn to thank our God for revealing His loving kindness in the tiny little helps of each day and pray to notice and see them not just the mess in my head. I will try to work to make something beautiful – even just draw, colour, sew, write to my family and my closest friends who mean so much to me simply by still somehow being here.

Somehow this moment will pass but good will remain. I’m trying to believe.

Hitting when you’re already down…

I really don’t want to talk as if I think the state or the world owes me something. It owes me nothing. However it does hurt when it seems that the systems that are supposed to help you actually hit you down hardest when you most need help.  On its own it shouldn’t be a big thing but when it seems to be the norm it gets too much on top of being ill already.

Recently I claimed for tax credits (for readers from abroad or who otherwise don’t know, this is a small benefit paid to those who are working but on a low income, have children, or have disabilities).

I had first claimed in Spring last year and my claim was rejected before they had even gathered all the information needed. I was so ill at the time I just let it go. I claimed again since starting my new job in November, because I am working part time on a very low salary. The first step is to fill out a form online to request a claim form, then to wait up to 2 weeks to receive the actual claim form.

Monday, I received an email saying that I am already in receipt of tax credits and if I believe this is not true, call this (expensive) number. I called this number and asked to be called back as the call was so expensive for me since I had no landline (can’t afford more bills) so had to call from a mobile. They refused and said they have no facility in the building to make outgoing calls, which I found very hard to believe.

I explained that I am not in receipt of tax credits. I was told that I do have a tax credits award and the award is nil. Right, so I’m not in receipt of tax credits. Yes, you have a tax credits award and the award is nil. Sigh….this could go on for a while. .. eventually I persuaded them to take the details of my change in circumstances. Then the operator’s computer froze so he transferred me to another operator without explaining any of the background and I had to repeat the entire process again. By this time I’d been on the call for about 30 minutes.  They repeatedly asked the same questions and did not listen to my answers. I repeatedly told them I couldn’t afford this call and needed to be called back. I have a few pounds a day to live on and the call had taken just about all my food money for the week. The operator actually told me that because my phone bill does not arrive for a week or two they hadn’t cost me anything! At this point even I could not quite believe their determination to prove they had no responsibility for anything.

Then came to trying to claim for the disability element of tax credits.  I was told that I wasn’t entitled unless I was already in receipt of PIP. I knew this was wrong – that is only one of the qualifying conditions. Online and paper documentation I had when I made my claim made this clear. The operator refused to budge. I insisted to speak to a manager. 5 minutes on hold. …

The manager immediately contradicted what the previous operator had said. But still insisted they would not consider the disability element unless I was in receipt of PIP. I pointed out that he, his colleague, the online and paper documentation each said something totally different, so I needed to know which was the case. He threatened to terminate the call and told me I was making things very difficult.

I suspect I was making it very difficult for him to continue reading from his script without listening to what I was actually asking…. :/ 😦

Then I had to insist that he give me a straightforward answer – was it essential to be in receipt of PIP as he was saying, or was the written information around having a disability which puts you at a substantial disadvantage getting work, correct?  He refused to answer and put me on hold. When he came back on the line he read a lengthy script about the qualifying conditions which confirmed that all the information I’d been given up to that point was wrong. Had I not insisted to this point, I would have been assessed incorrectly for the benefit. I still believe I will be assessed incorrectly because when I tried to tell him the reasons I qualified for the disability element and to ask what proof they needed of this, he talked and shouted over me and forbade me to speak otherwise he would terminate the call. 

By the end of this process I had been on the phone 55 minutes to a cost to me of £25. I still had not been able to get an answer as to how to submit the documentation that would support my claim (and that would have supported the claim I had been rejected for last year, had I only been given the opportunity to provide it). I had been given different information about eligibility from each person I spoke to and from all the written information I had.

By the end of the call I was so distressed, panicked, angry, for seeing yet more financial problems …. this was the very last straw this week and I couldn’t cope anymore. I went home, cut and took a handful of pills, not enough to try to end it, though that was what I wanted at that time, but in order to make it stop and knock me out. All through the next day I didn’t leave the sofa and took more pills to sleep.

Stupid and childish not to be able to cope I know but there really comes a point you can’t go anymore and when you meet obstruction even where you should be able to get help you’re entitled to, sometimes you just crumble.

Ginny xx

 

What if I don’t trust them?

I’m still struggling to process what I’m feeling after therapy group on Friday. Tomorrow I have my 1:1 appointment and I know we will be talking about it. It is going to be so hard to go and even harder to go back to group when it comes around this Friday.

Just when I’d dared to start to think it’s okay, it isn’t. Just when I’d started to think group might be a safe place, somewhere that you can dare to speak about things that are otherwise forbidden, it isn’t.

Just when I’d started to let my guard down a little and trust, it turns out I’ve hurt everyone and didn’t even know. How did I not know? Usually I can feel it right away and know it’s my fault and this time I didn’t. I so so needed to trust them there and now I can’t. I couldn’t understand what I was feeling then last night the thought hit me – what if actually I’m angry and hurting because I feel I can’t trust them? I did the wrong and I caused the hurt but what if I’m angry because I feel people didn’t say what was really happening?

What if I’m angry because I feel I can trust or speak anymore?

What if I’m angry because I really needed to trust and yet again it all breaks down, just as usual, every other time? I know and felt so so strongly they hate me, they are angry, they don’t want me there, they hate me, they’re angry, and they’re angry for each other too because I’ve done wrong and got it wrong and they think I’m nasty, a fake, no right to be there, they just want me to go away and just put up with me because they had to. What if that made me angry as well as guilty because I can never know where I am and know I must never ever let anyone close but so desperately need people?

Does anyone else ever just wish they could never have to speak again?

The hallucinations are multiplying as my thoughts spiral through all these things.

Ginny xxx

Walking this Borderland #6: Shine

Walking this Borderland #6: Shine

Stars can’t shine without darkness.

To everyone who is alone, hurting, fighting, crying, tonight –

Don’t give up. If you can’t say, one day more, say, just one hour more.

When all you can see is that everywhere is darkness and you are breaking and cannot believe that it will pass, if all you can do is breathe, then that is how you can go on.

In this darkness, you will be the stars, and this struggle you give your strength and your heart to will make you shine the brighter.

Ginny xxx

Walking this Borderland – You’re not going THAT way

Walking this Borderland – You’re not going THAT way

Don’t look back.

You’re not going that way.

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

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

Ginny xx

I know they’re angry

Guilt. Guilt, unease, fear, trepidation of what will come.

Therapy group was painful today. My mind was spiraling with so many thoughts of what I desperately needed to say but couldn’t communicate. Everyone had so much they were feeling and so much that had happened.

I just know I’ve hurt and upset everyone. I know they’re all thinking you’re nasty, stupid, weird, fraud, go away, angry with me, hurt because of me. Cold and away and just wanted me to go and didn’t want to speak to me anymore and didn’t want me there… and I think someone left because of me and I’m scared what she’ll do and what have I done?

And I really really needed this group so much.

I’d just started to trust and now I’ve hurt everyone and they’re frustrated and angry and I can’t give what they need and it’s wrong and why why ever did I start trusting or thinking it would be okay? Why did I let my guard down and not see the hurt I was causing? Why haven’t i learnt that if I think something will be alright and start to trust that’s right when I cause harm?

I can’t put the details of what happened or what we talked about here because it would break confidentiality for other people.

It will be very hard to go back next week. It will be very hard to go to my 1:1 therapy on Monday too. I can tell they don’t want me now. I’d really started to need them. I’ve messed it all up like every other time.

Ginny xx

Saving me

A couple of days before Christmas I hit the lowest point I had been for many weeks.

I had had enough. I couldn’t go forward anymore. I was past hurting into utterly gone and spent and hopeless. I couldn’t see anything past giving up and that there was no good I could do anymore. I was going to end it all. I knew what I’d do and I knew I’d do it then and that I didn’t want help.

My friend realised. She and her husband talked to me and what they said that night saved me. Despite everything being so dark for me they somehow told me I could do good and could be wanted. I didn’t want them to know but my guard was down. And they were there miles beyond what I deserved.

I never tell anyone or let anyone know when I feel like I’m going to end it. I never tell when I’m self harming either. I do tell my doctor / CPN but at the time I’m doing / feeling it,  I’d never tell a friend or family member because I fear if they knew, they would feel responsible for stopping me. I absolutely can’t put that on anyone. It is not for them to stop me when I’m at that point. Ever. If i do it it is my action alone.

But now my friend knows and I’m scared what does that mean now? Does she now feel that responsibility I tried to avoid putting on anyone? They saved me. What do I do now I owe to them the fact I’m still here going on now? Without them I’d have done that. I feel utter gratitude but equally even to tell them, as I have tried to, may put responsibility onto them, to watch me or stop me.

Thanks be to God I am not feeling in that state right now but I do know it may – almost certainly will – happen again.

I so don’t want anyone to feel responsible for me or worry for me.

…..

Ginny xxx

A closing drawbridge and a silent cry – Eating Disorders and Personality Disorder – #4

 

Protection in emptiness

Eating Disorders and Personality Disorder

Chapter 4 – Frozen

So, this is the first chapter of several in which I want to explore some of the things my eating disorders “provided” to me as a way of coping.

Please note a lot of the thoughts in this post are from my eating disorder and my psychosis and BPD – they are not ways in which I’m advocating thinking and I’m not saying that starvation is a good thing even though it did have a purpose for me. I’m in therapy partly to find other ways to cope rather than turning to methods that hurt me.

Emotions are frightening. Feeling is frightening. Feeling with such intensity is deeply painful and more suffocating and gripping than I can stand. Needing is not allowed, greedy, out of control, dangerous. My body and my longing centre that wants all these things (love, comfort, that I am good enough, that I can be safe, understanding, a parent, security, home, someone there…) is despised and resented. Inside me is evil, bad and ugly and it might get out. I want and I hurt and I do harm, I’m a liar and a fraud and I punish and it all comes out when I don’t even know.

If i dont feel it’ll be alright. If I don’t feel then I can walk one day more. If only the pain of knowing everyone around me feels so much will go away. If I can stop hurting them. If I can get away, because I so need to get away and shut off and sleep. I need the thoughts and the voices to stop. I need out and away from the terrible things I can feel all the time, that hit me and grip me and tell me I’ve caused hurt yet again.

There’s one thing that stops it. Don’t eat. Go on. Just a little bit longer. Stick to the plan of what you’ll eat. Count the tiny crackers out. Slow as you can take the tiniest pieces. Stick to it all and you’ll be rewarded with wonderful emptiness. Even go longer than you planned before you eat, by the minute then the hour. .. and the emptiness will grow and the high will rush through your body leading and lifting you to a higher and whiter and emptier place.

Keep going. You can keep going now. The starvation opens the door to aclosed off, frozen place. It’s good there. The thoughts and the needing and wanting and feeling stop. All you need is empty and all you feel is cold and numb and closed away.

It’s your place alone. You’re alone and safe. The voices are silent for now and you needn’t engage with anything your body or heart demands because you’re separated from those disgusting needy screams. In your frozen place the pain has dimmed and everyone else is safe too because you’ve gone well away.

Starvation created that empty place, as though it carved it away in your mind and it’s a sure retreat for you alone. Stick to rules and emptiness and no temptation and you will stay safe there. However frozen cold it is there and however much you feel your energy slipping away and your heart pounding and your muscles weakening, it is too dangerous to leave it. The feeling and needing (yours and others’) and consuming demands are just too dangerous. The emptiness and starvation has carved out this safe place and consumes more and more of your mind, like a cave in rock that becomes bigger and bigger, empty but consuming its surroundings with the very emptiness, so that it becomes harder and harder to leave.

To recover you are drawn slowly from this place or something throws you out of it forcibly and it is taken from you.

However much I am thankful to be recovered from the terrible physical effects of anorexia and the destruction it caused to the lives of those who care for me, a big part of me still wishes that this frozen place hadn’t disappeared. In my recovery I consciously said goodbye to this place as I knew I had to leave it. I cried for it. It hurt me and my loved ones badly yet also it had protected me.

Now without my eating disorder the terror of all the feeling and consuming is around me and there isn’t any escape. And added to it is knowing that I “should” be fine,  better, out of danger. Out of physical danger, yes, but ironically into pain beyond what I know how to stand, although I also know how very weak I am not to be able to stand what others deal with day to day, and that adds still more to guilt and longing for escape.

Perhaps my therapy will show me how to walk through these out of control feelings and how to continue when there is no escape and no freezing out.

Ginny xx

 

 

Can’t you see they’re in so much pain?

NB this post refers to the films The Green Mile and The Perks of Being a Wallflower. This post is about BPD and experiences of others’ emotions however:

Slight movie “spoilers” alert if you haven’t seen the films and are planning to 🙂 ! Also, whilst both films were interesting and I definitely identified with characters, the first contains a few highly disturbing scenes and themes and part of the second was triggering to me at the time I watched it, though I think only through similarity with my personal experiences. Therefore to be on the safe side, I’d advise caution if you do decide to watch the films.

 

“Mostly I’m tired of people being ugly to each other. Tired of all the pain I feel and hear in the world every day. There’s too much of it. It’s like pieces of glass in my head all the time.” – John Coffey in Stephen King’s The Green Mile

Someone shared this quote with me today. It was years ago I saw the film “The Green Mile”. It is not the kind of film I normally go for;  it was watched as someone else’s choice. It was thought provoking and also deeply disturbing. I would not watch it again now as it’s too harrowing but it has a lot to say about our judgement of good and evil in ourselves and others and how this affects how we treat our peers, those we work for and those in our charge.

“The Green Mile” is set on death row in the USA. John Coffey is a black American prisoner who has been sentenced to death accused of the murder of the two children of the plantation owner for whom he worked. If i remember right he was sentenced because he was found at the scene. In fact he was not the killer; he was trying to save the children. Coffey has a super-normal (supernatural or spiritual?) power to heal people. He touches them and draws the illness out of them through his own body and then “breathes” it out and away. Coffey knew the children had been lured away and attacked and he was at the scene of the crime because he was trying to save them. During the film, Coffey seems unbelievably calmly accepting of the horror that he will be executed and shows astounding compassion to his guards and other prisoners.

In the horror of death row the introduction of this super healing power seems somewhat jarring. Perhaps that’s part of Stephen King’s intention. When we watched it my friend wondered wouldn’t it have been better if it were totally realistic without the introduction of the supernatural realm. I can see her point. Then again I think King integrates it powerfully into the story. In a place of utter despair and darkness on death row, good cannot be extinguished. Compassion and healing still exists through one poor man who continues to do good through being utterly judged, rejected, broken and condemned. No matter how weakened he is, he can still do good and he’s a channel for healing.

He is in the broken and condemned state he’s in precisely because of his desire to help, to heal, to do good even when people judge him wrongly, and because of how much he knows other people’s pain and hurt and needs. Had he not recognised the children were in danger, searched and tried so hard to save them, he would not have been found at the crime scene and would not have been accused…. through the film we see other examples of how Coffee’s compassion and feeling for others overrides his own needs or his own pain.

The quote I started this post with expresses some of the cost to Coffey of feeling so much other people’s pain and needs. I those of us with personality disorders and post traumatic stress disorders, or who have suffered abuse or traumatising relationships,  can struggle just the same.

We feel so very much what others feel. It goes beyond empathy. It goes beyond wanting to help. It is a mental and bodily sensation. We actually feel what the other person feels. Sometimes we feel it more suddenly, more clearly or more overwhelmingly than our own emotions and needs. It can be a shocking or crushing wave or grip. We can’t breathe or we tense and jump as though we’ve been hit. We feel something in us twist painfully and connect to the other person’s hurt and we feel more than a need to take it from them – perhaps a longing, draining need to take it, rather as if we could do as Coffey does in the film.

It can be too much to bear. Too much to be around anyone and so very tiring. After social situations we may need time to rest and recover and go away to some quieter, colder, more numb place in our mind. Or we need something desperately to distract us and this may be dangerous impulsivity, self harm, drink, drugs and so on, because we need anything at all to get away from the knowledge of such hurt and pain in the world that we can’t draw out.

For some reason it’s the feelings ofhurt and need or pain or anger that overwhelm us and fill us more powerfully than good feelings in others such as joy or excitement. I don’t entirely know why.

There’s another film that spoke to me about this too, “The Perks of Being a Wallflower”. The main character has suffered childhood abuse and at the end of the film, he asks the doctor treating him, “can’t you see that they’re in so much pain? ” – can’t you see that everyone around is in so much pain, because he can see it and doesn’t know what to do. I can see it and feel it and take it all on and I don’t know what to do. It can be so impossible to carry on through that feeling and so tiring, that we withdraw totally to protect ourselves. Then we seem cold and that we aren’t making any effort to help anyone and thinking only of ourselves – when actually we ate feeling so very much and so much wishing we could heal others’ pain.

In “The Green Mile”, despite being judged and condemned, Coffey continues to feel everyone’s pain and continues to heal people. He is utterly misunderstood. His power for good is hidden to almost everyone. But even there in death row it can’t be stopped.

Even if we are utterly weakened and broken, even if nobody understands, even if we can’t tell anyone yet what is really happening,  the good we can do will still remain. Even if we feel we’ve totally failed, there is good in us, even if it’s hidden from us too just now. Not seeing it doesn’t mean it isn’t there. Paradoxically, though our ability to feel so much has a great cost to us in pain, in being drained and spent and hurting, it may not be a bad thing. It may become something that enables us in the end to help and actually even connect to people.

I think learning to believe good in ourselves lasts even in weakness and apparent failure is a big part of getting there. So is finding a way to stand experiencing what we feel of others’ emotions and our own, so that we can use these feelings beyond empathy to be able to help people rather than having to withdraw because we cannot stand it. So far I really don’t know what the answer to this is, as yet.

Ginny xx