Tag: CPTSD

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

Walking this Borderland #10 – bat naps and counting sheep: the struggle of sleep

 

[NCIS produced and written by Donald Bellisario and Don McGill; all rights belong to CBS / Channel 5 and the respective artists. With thanks to Dream-A for the clip (Season 8).]

Sleep is one of the first things that I find becomes difficult when I’m going downhill. Just when I’m thinking about going to bed, my psychotic symptoms usually get up. My auditory hallucinations and sometimes the visual ones will be worse when I’m alone at night. The re-experiencing of traumatic memories definitely is worse. For long periods at a time, because of historic abusive experiences and fears, I’m too scared to sleep in my bed and then if I try but have to get up, I can become terrified to open the door to go out of the room as well. I’m locked into a flashback of a terror I had as a child that I’d find my mother dead outside my room, because of a threat she made. To escape it I’ve been back to sleeping on the sofa again for weeks.

Anyway, I’m going off topic a bit. At the moment to try to get back into a proper routine of relaxation and proper sleep, I’m trying the following three tips for a better night:

First, I’ve moved things around in my room (for example, putting the bed in a slightly different place) so as to create a change of environment and make it as different as possible from the one associated with my fears and flashbacks.

Second, I have found a relaxing CD which I am playing specifically before sleep time and only before sleep time, so as to make the association between that music and those words, and relaxing for sleep.

Third, I’m going back to trying a technique one of the nurses told me at the hospital, which is a modified version of counting the proverbial sheep. When you are in bed, close your eyes, and then close them a little bit tighter – not scrunching up your eyes, but just pressing the eyelids closed a little harder than you would if you were just blinking, maybe. Then count very slowly back from 100, concentrating on each number. Or, try imagining a colour which you enjoy looking at, and hold a cloud of that colour in your mind. Focus on it but try to prevent it taking on any particular shape or form. Though the latter sounds strange I found it to be curiously effective as relaxation for a few minutes, together with some music, even if I did not fall asleep!

Right, here’s to “bat naps”, and eventually a night in bed.

Ginny xxx

Crisis Plans

Last week, after the really distressing meeting on Tuesday, where I completely lost it and just screamed and screamed, I had another meeting with the same CPN on Thursday. It went quite well although I am still reeling from Tuesday. I never lose it like that when anybody else is around. I do that alone at home, usually at night, usually cutting myself before I can reach that point, because it stops some of the noise in my head for a while and quiets the fury and hurt. On Tuesday all my control methods didn’t work and the worst of me exploded. Since then I’ve been feeling both raw and outside myself at the same time.

We tried to come up with other ideas for what to do when I am extremely distressed when I am on my own, other than always turning to cutting or overdosing. The problem is that no matter how harmful those things are, they do “work” to stop the feelings (if only by stopping me being conscious!) punish myself, so bring down the emotion and enter a state of numb nothing for a while, or at least explicable pain.

One of the things we came up with was the Rescue Box, which I’ve posted about previously. I’ve committed to making that up this week.

The other things my CPN suggested were: putting my head under cold water eg cold shower for 20 seconds, to shock the body and so bring down the emotion (a bit like the lemon juice idea!), starting some activities that would give me more social interactions and so leave me on my own less, developing a relaxing routine for evenings (which I’ve got out of the habit of), and sorting out my dodgy internet access so that I can have more contact with people via blogs and similar, as well as making use of online resources for relaxation and mindfulness.

I’m not very sure how this is going to go. I’m starting with small steps, making up the Rescue Box this week and getting in contact with my internet provider.

A large part of the problem for me is that all these techniques are great ideas but I too quickly reach too high a level of distress to be able to use them. When I’m in that state, or when I have more of the psychotic symptoms (which tend to accompany higher distress), it’s as if the part of my brain that would reflect enough to try one of these techniques just shuts off. I have an overwhelming need for someone else to keep me safe and almost hold me and ground me and prove something exists beyond the fear and distress. But the PD Service seem absolutely against anything that would lead to me not being on my own in these situations (like being referred to the Crisis Team who’d come to see me at home, or being admitted when I’m overdosing etc). I’m not entirely sure why. They are written into my “crisis plan” as ways to keep me safe when I can’t keep myself safe, but when it comes to it they are withdrawn or refused. This is something I’ll be talking more to my 1:1 therapist and/or Care Coordinator about.

I guess I have to learn to discover earlier when the extreme feelings are coming – at the moment they spring up at me from nowhere and that’s terrible. It feels very out of control. There’s no doubt that as I’m experiencing more emotions, I’m becoming less stable.

I’ll post an update on how things are going with trying these techniques.

Ginny xxx

Sing like never before, O my soul (Ten Thousand Reasons)

Lent sneaked right up on me this year and I felt so unprepared. Partly, because it began earlier than usual, Easter being about as early as possible* this year, but also because I have been through a period of having really given up hope. One of the most frightening things about my Borderline and PTSD is how the most terrible emotions can obscure everything good and important to me, even God and faith. It has been a period where God and heaven seem “hidden” for a while. Very slowly I am learning that the hidden times do not mean that my relationship with Our Saviour is lost or that He is gone away.

Bless the Lord, O my soul, worship His Holy Name. Sing like never before, O my soul, I’ll worship Your Holy Name… For all Your goodness I will keep on singing, ten thousand reasons for my heart to find.

Last night I went to a candlelit service of reflection, music and prayer, with the opportunity for conversation, guidance and the Sacrament of Confession (reconciliation).  I talked with one of the Priests about the feelings of anger that are coming and my fears of them; my fears of being out of control and consumed by this emotion that seems to block out all good and through which I cannot pray. His response really surprised me and I think it is going to change how I see my relationship with God and the work of each one of us in the church body and the community. He told me that the struggle I am going through with these feelings can itself be prayer. Prayer itself is not intended to be painful. If one kind of prayer, like praying with Bible verses, or reading, or trying to spend long periods in silence, is impossible at this time, perhaps God is leading me towards a different kind of prayer at the moment. Continuing to walk and struggle through this, even knowing that perhaps this pain will never be totally resolved this side of heaven; offering the work of every moment of every day; offering someone kindness or a smile; giving thanks for the small beautiful things that we notice along our way to work; writing to a friend; all these actions can be actions of love. The passion of anger may even be channelled into the passion of love. Perfection is not needed and could even lead to pride in our own achievements, or desperation feeling that we are useless. Continuing to walk forward when even the smallest things are an agonising struggle – that can be love, and that can be prayer.

And on that day when my strength is failing, the end draws near and my time has come, still my soul sing Your praise unending, ten thousand years and then forever more.

Perhaps then, this can be a new kind of prayer for me. Right here and now, even though I am so far from where I feel I am meant to be and even though so often I can lose sight of hope very easily. This kind of prayer, prayer in this moment, prayer in our offering of our current selves and current circumstances – that cannot be lost. It does not require even hope for the future, or tranquility in our hearts; it does not require success, much less perfection, but it does require the resolve to walk on.

Whatever may pass and whatever lies before me, let me be singing when the evening comes.

Italicised lyrics – extracts from “Ten Thousand Reasons” by Matt Redman. This is rather different from the kind of music I usually choose to pray with but it’s a song that speaks to me right now.

 

Walking this Borderland #9: My rescue box

Eee, it’s been a long time since I’ve added to this Series.

My CPN and I talked about the following idea today. I’ve been meaning to put this together for a while.

All the other ideas / coping techniques I’ve written about so far in this Borderland series are things I’ve tried or do use currently myself. This post is a bit different because this idea is new to me and I’m going to be trying it out for the first time, so I can’t yet say how helpful I’ve found it. (Updates will follow and I’d love to hear from you if you use something like this!)

I’m going to make a “rescue box”. I’m not quite sure if that’s what I want to call it but for now, it’s what I’ve named it. Apparently some people call it a suicide box because it’s a box full of things to turn to when you’re feeling absolutely at your worst. I didn’t want to call it that because it emphasises the terrible feelings more than the good I’m trying to climb towards.

The basic idea is to make up a box filled with things that help you to cope in times of extreme distress. This works well, I’m told, if like me, you find sensory or tactile things helpful and grounding. As I think I’ve mentioned earlier in this series, in personality disorder when emotions are overwhelming, introducing other, soothing sensations can help bring the emotions down. You can also put things in the box that remind you of good times or reasons that you do keep going every day, or anything that triggers positive memories and thoughts in the hope that in the long run making more and more positive memories makes these stronger than bad memories or obsessional thoughts.

I’m new to this. I’ve been trying to think of things I could put in my box. Here are a few things I came up with:

  • A special smooth pebble that I collected on the beach one good day, which I find very soothing and grounding to touch. It also reminds me of the sea. Walking along the coastline and watching the sea always assures me of the presence of creation and love far greater than ourselves.
  • A small stuffed animal – yes I may be an adult (perhaps 😉 ) but I still find soft toys comforting.
  • A particular book that never fails to encourage me (more on that in another post).
  • Photos of my godchildren whom I love very much; seeing them always brings me joy.
  • A list of people I care about whom I can pray for or do something nice for – maybe write a letter or a card. This reminds me I’m not alone and helps me focus outwards on other people rather than my own problems.

That’s what I’ve come up with so far. I’ll post some pictures as I make up the box.

I have the feeling that the hard thing is going to be remembering it is there and being able to use it when I really need to. I can have coping strategies but being able to turn to them rather than a destructive “coping mechanism” is the hardest thing.

Do you use a box like this or anything similar? How do you remember to use it in the hardest times? Does it help when you’re distressed as well as when you’re feeling okay?

Ginny xxx

What do you do to stay safe?

Today I’m going to the hospital again for another meeting with the CPN. I’m very scared of going after I lost it there on Tuesday. I think I’m scared what will happen, scared of losing it again, ashamed about what happened and still feeling very out of it, although not in the way I usually am when I dissociate. That gives some kind of protection. This is raw at the same time as shaken and disconnected.

Also I’ve got an inescapable question that has been in my mind for several weeks. I’m not at all stable or safe at the moment. I want to continue with therapy. I committed to the group that I’d do it and not give up. I promised to God and Mother Mary in prayer. I’ve made quite a few sacrifices for it – I don’t think I’d have had to leave my last job if it weren’t, at least in part, for my therapy appointments (though my last employer were definitely at fault too, in my opinion). I’ve seen the therapy as the only hope of learning how to get better and manage my condition. I’m privileged to live somewhere MBT is actually available (there aren’t specific PD services in all areas of the UK). I really don’t want to have to stop therapy.

However, at the moment I’m actually more unstable, at least in part because of the therapy and the emotions, memories and questions that it raises. This isn’t necessarily a bad thing. Other people tell me they can see positive changes in me, for example communicating more clearly about emotions and things that happened to me in my childhood, none of which I can yet see for myself. However I trust the people who tell me this and think it has to be a good thing. It’s another thing I don’t want to waste.

So the big question is, what to do.  I can’t keep myself safe at the moment. For example I’m “coping” by cutting, taking overdoses or higher than prescribed doses of medication, drinking* (and this really isn’t me, I do not enjoy drinking in this way), escaping from daily life by ignoring letters, calls, etc and not able to keep on top of the basics of looking after my home and myself (cleaning, cooking etc). I’m more unstable in my moods, especially anger, and I’m struggling more to hide everything to try to participate in daily life by eg going to work. Things like hallucinations or paranoid thoughts or feeling dissociated are pushing their way more into the working day.

I don’t know what to do to change this.

I’ve some hope that medication changes could help and I’m seeing the psychiatrist on Friday. But I doubt that’s going to be the only answer. I’ve tried to exhaustion (both daily and when in crisis moments like the extreme distress or wanting to end everything) the techniques I know like distraction and grounding and self care / self soothing (this latter is very hard for me to do when I feel as I do about myself). It isn’t working. And I feel that the things other people could do to keep me safe, many of which are on my crisis plan, are not happening or not working either. I’m experiencing more and more let downs where xyz help is promised then doesn’t materialise (appointments canceled, calls not returned, planned sources of support withdrawn, mistake after mistake, discharge plan not followed). Or I’m told that the help I want to keep safe doesn’t exist or I don’t qualify. What is offered – and don’t get me wrong I’m grateful that it is offered and I know it’s more than many other services provide – is not enough to keep me safe. For example when I’m suicidal a 5 minute telephone call may calm me a bit for a few minutes but an hour later in usually feeling worse than before and – this is key I think – still on my own trying to cope.

What do I do in this position? Are there other techniques I can learn to cope better? Are there other or higher doses of medications? When I so so much feel I am not safe on my own and really need someone with me (especially when I’m really distressed but also day to day because the slightest thing, as little as a letter that makes me panic or a canceled appointment,  can thrown me into extreme distress, self harm etc) what can I do? The PD service are adamant I mustn’t be admitted and don’t qualify for any carer help and ongoing support in person isn’t possible. I haven’t any other way of getting that kind of support. I live alone, my dad and step mum live hours away and I don’t have friends very locally or whom I see regularly.

So how do I do my therapy and stay safe as well? How do I either answer this need not to be on my own when I’m so much at risk and unstable, or what solution do I have to learn instead?

What do you do to stay safe between therapy appointments or between times you can access support?

I know this probably sounds silly and I do get a lot more support than most people and all I’m talking about coping with is simple daily life. Right now this is where I am.

Ginny xxx

*just to be clear, I’m not diagnosed with any alcohol problem and I’m not comparing my struggle with that of someone who is struggling with alcohol or other substance use. That is a much more painful place. I sometimes use what is probably an objectively average amount of alcohol taken with my tablets to make myself fall asleep when I can’t cope. Not a great thing to do but I’m not trying to compare the two.

I lost it.

I lost it today. And I wasn’t on my own this time. I went to an appointment with one of the CPNs. I was shaky before I got there, anger rising in the waiting room as two other patients and I were talking about how let down they felt by services, and in my appointment everything I said it felt like it was minimised or dismissed, I think. I can’t remember what we talked about or what we said.

I snapped. I screamed and screamed and then I can’t remember. Pain. Then I was on the floor screaming and then I couldn’t breathe and I was crying and couldn’t stop. I thought I’d hurt the CPN and took a long time to believe I hadn’t. Then I couldn’t speak and somehow nearly an hour had passed with all this, though I couldn’t understand it. I was so tired.

I’ve never flipped out like that in front of anyone. I cut so I don’t get there. Now it isn’t working. Usually it just happens on my own usually at night. Now they’ve seen the worst of me. Now I’ve lost control. I want to take responsibility but I’m losing it more and more. Nothing is working.

I’m home now. On the way home I felt out of my body but unable to get away from everything being shaken. Tea and blankets and NCIS tonight, my usual escape. But I have to face it.

I’m sorry for being rubbish this week

I’m sorry for being rubbish this week

I’m sorry for being rubbish this week. I’m sorry for being so slow to reply to comments and not being there enough for you (lovely readers / bloggers) as well as other people important to me in my life. I have been so shattered and sinking and though that’s true and consuming, I hate yet again using that as an excuse. Someone I was close to told me a little while ago that at first maybe you can hope people will understand but not after it’s gone on for years. Certainly “it” has gone on for years for me. Whilst it hurt when she said that I can also sort of see that you cannot expect endless understanding and it feels like asking more and more the longer I am not there and not well.

It is only very special and very empathic people who continue to understand and to be there. I am very very thankful for you. I care about you and I am so sorry for the times I fail to show it when I cannot write or say or otherwise show the love and support I wish I could. You mean so much to me. Thank you.

***

Also, in the past few days I have been trying to put together something in writing, a kind of open letter, about how I feel about my current care and how I have been treated by different services in my struggle to get help. I’m going to finish this tonight in preparation for, hopefully, meetings with a nurse practitioner and the Psychiatrist at the hospital this week. I think I may share some of it on here because I don’t think I’m the only person fighting the failings that have pushed me nearer the edge.

Ginny xx

Silly post, but just to hold myself to it!

This is a pretty silly post but I’m writing it here in order to hold myself to it, because if I write it here I’ve made the commitment to all of you (lovely readers) as well as myself.

I went to group this morning. I’m so boiling with feelings and hurt and loss and anger (not with group or anyone in it but with the whole PD Service). I desperately need to shut off and the best ways I know without help are things that hurt me. And it’s very possible I could just go home and do that and dissociate or literally knock myself out. I am going to try to make myself take another action instead.

I commit that this afternoon I will write a card to send something to my step-sister that she needs. Then I will clean in every room in my flat. It is in a complete state as i have not cleaned or cared for it in the state I’ve been in in the last two weeks. I may not finish all of it but I will vacuum everywhere and I will clean at least three things in every room (it’s a small flat!).

And to keep going in the promises I made in my commitment to getting better, 5 things I’m thankful for today are:

  • I have a flat of my own to live in (well I say my own; it’s rented but it’s home and I’m blessed to have my place and my safe space).
  • I went to therapy today and talked about horrible feelings and the other members of the group listened and didn’t treat me like a freak. They actually seemed to understand.
  • I saw an old friend yesterday who I have not met in years. She seemed happy and well and she’s having a baby very soon.
  • My step-sister and I are getting in contact with each other more.
  • Um… I didn’t have to wait ages for the bus back to town after therapy, does that count 🙂 ?!

I’m wishing for something good to happen to you today.

Ginny xxx

Group and no more trust

Tomorrow is MBT (mentalisation based therapy) group. I don’t know whether to go.

All trust I had in the service has gone. It’s been completely wiped out by the lies and let downs of the past months, the proofs they don’t believe me, the tricks, the cuts that open me more and more vulnerable then leave me with nothing and noone.

I don’t really want anything to do with a service that does this, but I’m desperate and have nowhere else to go. I’m desperate for help but it’s denied, it’s promised then withdrawn, or I’m deemed not in need or not believed. I want to do the therapy but I can no longer go forward safely with it. I cannot cope between sessions except by overdosing to black everything out and self harming to punish myself, temporarily quiet the voices, temporarily be something other than the utter pain. I’m not allowed any of the things that would keep me safe between sessions.

If I go tomorrow, I will be so angry. I can’t say I’ll keep it under control in the session. I can’t say I’ll stay “stable”. Nothing keeps it in anymore. I can’t mentalise like this and really I don’t want to. These things just are as they are. There’s nothing to be “curious” about or explore my feelings or someone else’s thoughts. Their thoughts have been made totally clear – they don’t believe me, I’m not allowed help, they’re tricking me, they’re cutting me open then leaving me and finding more and more ways to do it. My feelings are exploding and total. Fury. Hurt. Trapped. Over the edge. Liar. Fake. Fraud. Pain. Screaming.

If I go to group I can’t avoid it being clear I have no hope and no trust left. If everyone or anyone else does trust the service and does believe they’ll help them, then maybe that gets them through and helps them and is a lifeline for them. I don’t want to destroy that.If I say what’s happened to me, even in the last couple of days, I could destroy it.

I could go and just try not to talk about anything to do with me and just be there for other people and listen to them and try to mentalise about what other people bring. But I’m so far gone over the edge I don’t think I can trust myself not to explode.

When the group started committed to do it all. I committed to not leaving. I committed it to everyone in the group – not out loud, we didn’t do that, but in my head I did. I promised to God and Mother Mary too. If i leave I break my commitment to everyone, not just the service. I really don’t want to do that.

Yet at the moment I’m just ending up in more and more danger. It seems as if I should just accept this’ll never end, dissociate as much as possible, hope for something sometimes bearable…. but I think I’m too far gone for that. I wish I’d never trusted them.