Tag: Dissociative Identity Disorder (DID)

“Music, sweet music, there’ll be music everywhere…”

It’s been a while since music has made me happy. Music is important for me. I don’t deal well with silence – something I’m trying to work on because it stems from trauma and what happens if I’m alone with my thoughts, my feelings and the voices. So when I’m home alone I tend to have either the TV on or music playing. Many songs help me get through the day by reflecting how I feel and even giving me some sense that someone is here who empathises. Others are effective at taking me away from the stresses I’m working through in reality. They may remind me of a good memory or something I like but more than this, they can be a super-highway into dissociation – not the scary dissociation but what I call the protective dissociation, where I can detach by becoming subsumed into one of my escape worlds.

It’s been a long time since music I’ve come across by chance has stirred up a simple feeling of happiness here and now. Today I was trying and failing to focus on work I want to prepare for seeing the psychologist tomorrow and on preparing a short talk I have to give on Friday. I was exhausted and my head couldn’t take anymore. It’s been a gruelling month. I decided to stop and do something else, a sort of example of the strategy “take the opposite action”. Feeling exhausted and overwhelmed I decided to act as if I were happy and in control of my life. I put on iTunes Dreamboats and Petticoats Diamond Edition – vintage and summery?! – and started cleaning my lounge of a week’s mess. After an hour or so it was as though a switch flicked in my brain and I started to feel mentally energised (if physically tired because of my disabilities and resultant muscle problems) and the panic receded. I hung out the laundry and actually felt happy for a little while.

Now I’m returning to my work for the psychologist and though I’m starting later than planned, at least I can use the boost the music gave me and actually face it.

Ginny xxx

Dancing in the Street by Martha and the Vandellas

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Clearing out my flat and trying not to go out of my mind

I didn’t know it had been so long since my last post. Life is chaotic. Either I’ve been too low to write, dealing with flashbacks and triggers or scrambling madly to keep on top of more and more pressing demands.

Perhaps I’ve actually achieved quite a lot, with the unending support of my fiancé. We had to put in a “mandatory reconsideration request” with the DWP for his Personal Independence Payment (PIP), including a lot of extra information and details of everything they had got wrong in their report about him. This meant a huge amount of research and writing. In itself it was a daunting task. There were others we tackled this past fortnight too. Perhaps I should feel pleased we did it. Instead I just feel exhaustion, anxiety and upset (at the lies in the DWP’s report and the ramifications for us of his PIP being cut). If I could feel some sense of achievement I’d feel more thankful and encouraged; I’d see how God is leading us step by step. When despite hard work there is still a maze of uncertainty and upset and no conclusion to the situation – in this instance, we have to wait indefinitely to hear back from the DWP as there is no timeframe within which they have to respond – I find I can’t see what we have achieved. Even when others can and are optimistic.

This month several notably positive moments got lost in the anxiety and depression and desperate hamster-wheeling to meet deadlines. For instance I had a couple of great psychology sessions at the hospital. I need to take the time to build up from that.

Meanwhile as a way to try not to lose it completely I’ve been clearing through my flat – again – putting everything I can for sale this time. I haven’t sold as much as fast as I’d hoped but it’s better than nothing. At least it feels like I’m adding a little more to our savings for our future. Listing items for sale online takes more time than I’d expected, accounting for photographing, pricing, listing, checking postage and keeping on top of enquiries.

I signed up to eBay which I haven’t used for some years. It’s been helpful and I’ve sold a couple of things, as well as buying a couple of cheap smaller size clothes I needed as I’ve lost weight. However straight away I am faced by constant temptation to buy things I don’t need, or binge spend when I’m low. I’m worried what I might do if I shop on there when I’m “gone” (when I’m dissociating) and I spend impulsively, taking me back to the state I was in when I shopped and shopped and accumulated bags of things I didn’t recognise or recall buying. It would be worse to fall into this now when it’s not just me but my fiancé’s life that would be affected. I need to put some safety measures in place.

Ginny xxx

The guilt I feel when I’m met with no response – Part 2

This is Part 2 of a 3 part post. You can find Part 1 HERE

I wonder how much of my misinterpretation of emotional facial expressions is because the people I grew up with, my current family members and I myself express emotions in a different way from the typical?

It occurs to me that I’m told that often I show no emotion outwardly, or that people can’t work out what I’m feeling. In a family member’s words, “we just have to have some kind of reaction out of you,” and “we have no idea what on earth is going on with you so it feels like – aargh – we can’t be dealing with this!” I’m often told this when internally I’m having really strong emotions of loss, hurt, upset, abandonment and fear, and having flashbacks. Sometimes I’ve wanted to keep my emotions hidden. Almost always I’ve tried to turn my feelings inwardly so as not to bother or hurt anyone else with them.

However at the same time I’ve frequently thought other people understand what I’m feeling inside (but don’t want to discuss it so I just have to keep going) when it may later transpire they had no idea what I was feeling. I will then find it really hard to believe they had no idea. I will also be upset because my attempt to keep inside the sad feelings I have, to keep going as you’re meant to and not draw attention to myself, then backfired and seems to cause anger and upset and accusations of being childish, spoiled, rude or disrespectful, and of making other people responsible for me. People have said things like “It looks like you’re accusing me of not looking after you,” “I’m not responsible for how you feel,” “Its not anyone else’s job to make you feel better,” “You’re a spoiled little brat”; I’m told I have to stop thinking about my own problems, should push them aside, should think what other people have gone for me, etc. Which is often exactly what I’ve been trying to do and nearly broken under the strain. I don’t know how I get it so wrong. I don’t know what other people are seeing at these times that is childish or rude etc. If I did I would have some chance of correcting it.

This reminds me that as a child being abused, I was daily really distressed, inevitably expressed it (til I learnt better) and got no help. I was at best ignored. More often the punishments redoubled and threats got worse – more threats of how I was breaking up the family, of how the couple of people I had and loved would die because of me and graphically how I would find them, of how my parents would be taken away. I was told I was a liar, faking what I was feeling, behaving as I was in order to cause worry and hurt to my abuser, to punish them because in some way I didn’t get what I wanted. One of my abuser’s paranoia about us being watched increased too. Her bizarre, possibly psychotic behaviour, and ridiculing of me, came to the fore. I tried my hardest not to express any feelings, even physical feelings. When I got ill I was terrified what would happen when my abuser and others complicit in the abuse found out. Basically I got no response or a terrible response, and none of the help I needed, from my main abuser and the person enabling her.

Both my abuser when I showed my emotions as a child, and family members now when I try not to show my emotions, said/say that I am childish, spoiled and hurting others.

When I do express my emotions now, the reaction from my family is rarely positive. Occasionally it is, but often it isn’t. The fact that it fluctuates is really hard to deal with. But that’s another story for another post.

My abuser’s emotions could change in a couple of seconds so I had to be constantly on the alert and do what I could to stay safe. She was either emotionless in all her expressions, or furious, or distraught, or ridiculing me. Occasionally she was happy but you got the sense it was only on the surface and sometimes it seemed like a trick, especially when it quickly flipped to anger or ridicule. (Her severe psychotic episodes were somewhat different.) Whilst I had to be on the alert to her emotions, I didn’t learn anything from her about normal emotional expression.

My other immediate family members’ emotions are also hard for me to judge, in facial expressions and verbally. I can fail to spot the onset of anger with me. At other times I’m overwhelmed by how they express it. I often interpret anger when they are actually feeling concern or upset. I interpret disinterest or rejection when they say there is none there.

So…. on the whole that does seem quite messed up, doesn’t it!?

To be continued in Part 3 (which will be what I thought I was going to write about originally!)

The guilt I feel when I’m met with no response – Part 1

I was reading about how people with borderline personality disorder interpret emotion in facial expressions. I came across a study that had found that people with BPD are quite similar to people without any personality disorder in how we perceive emotions in facial expressions, however, those of us with BPD are likely to perceive neutral facial expressions as communicating “negative” emotions*. If someone is not displaying a positive feeling in their expression, we are likely to interpret a negative feeling. Of course, facial expressions are a somewhat personal and subjective thing. Additionally, I am not sure whether the finding was that we tend to interpret the perceived negative emotion as directed at us (eg the person is fed up with us) or as a non-personally-directed emotion (eg the person is sad, the person is frustrated after a bad day). Perhaps the study didn’t differentiate. I must try to revisit the study online and I’ll post a link in the comments if I find it.

Two things rang true to me. First I agree that I’m likely to infer from an expression that isn’t warm / positive that the person feels negatively. I’m not sure whether I actually see the expression as negative, or know it’s neutral (maybe “not letting anything on”) but a neutral expression for me means the person’s feeling is negative. Second, once I interpret a negative emotion (from whatever expression) I will usually be absolutely sure it’s directed at or because of me. Even if there are abundant clues that it’s because of something else, even if logically it can’t be because of me, this is my default assumption. Cue massive guilt and a desperate urgency to put things right. My first thoughts, my deepest emotions, my bodily reactions, are all based on that. Even flashbacks or memories involving deep guilt (where I know I hurt someone in the past) can follow.

This can all happen before any words are spoken.

However, I do the equivalent with speech and writing too. If anything is left open, ambiguous or ignored, I often feel I’ve done something wrong, or caused irritation or anger or displeasure, or that the person doesn’t believe me.

To be continued in Part 2.

* Note: by “negative” I mean feelings like sad, angry and so on. I don’t like using the word “negative” as it suggests something wrong with the feeling. This isn’t what I mean. All feelings are valid. I couldn’t think of another word. Perhaps “unhappy”?

Panic about planning

My partner and I had to go into town today to buy some items for Easter and for volunteer work next week; also to meet a friend for coffee. There were 5 items on the list, to be bought in a couple of different shops.

Why did I go into a full panic attack?!

The task seemed completely insurmountable, more and more insurmountable as the minutes passed; and the more insurmountable it seemed, the angrier I got with myself. If it hadn’t been for my partner I would not have left the house. I’d have hidden away under my blanket at home. Yes, like a three year old.

I could not make any decision on where to go. Nowhere would have everything. There was a potential problem with every potential store we could go to. There was a reason not to go to this or that place, but also to go to this or that same place. I was exhausted. I wanted sleep. But I had to get everything on the list or I’d let people down at work. If I did go, what order should I go to different shops? All the possibilities made a desperate screaming noise in my head and it was impossible to choose and any choice felt disastrous.

Why? Why am I so unable to cope with the simplest choice and task? Decisions are always harder than I think they should be but not usually this bad.

There seemed to be too many combinations of possible outcomes to make a choice but I don’t know why this was so paralysing. Why there was so much noise and crushing pressure in my head. My reaction to not being able to choose was very much a child’s – want to stop, want to hide and so on. Had I dissociated and my little-child-self was in the fore and unable to cope with the decision-making? Or is my adult self so overwhelmed I can’t go through a normal choice process? Or both….

My partner made the choice in the end. We made it out. I had two other near panic attacks when things went wrong while we were out. We were glad to see our friend. I’m home now, utterly wiped out, pain off the scale. On days like this I’m astounded my partner wants to be with me.

Ginny xxx

For you alone and all of you

Today is Good Friday. Today at 3pm we commemorate Our Lord Jesus’ passion and death for us on the cross.

It is more than a commemoration. As we pray, as we venerate the cross, as we approach the altar and receive Jesus, Body and Blood given for us, we take part in the sacrifice He makes for us and the redemption that flows from His Sacred Heart.

On a Good Friday several years ago, the Priest gave the briefest and possibly most powerful sermon I have ever heard. After the reading of the narrative of Christ’s Passion he simply said: Jesus did this for you, and He would have done it for only you. That very simple amazing truth about the cross lifted me right into the arms of Our Lord.

At the Cross, if I only stop there and look at my Jesus, there is no hiding and no pride. None of my sin, need, failure, weakness, pain, despair, is bigger than what He did on the Cross. And none of my pain, longing or grief is too small or stupid for Jesus to care about either, even the things I try to hide from everyone because I feel they are so childish or bad. Jesus did this for me and for all of me.

It is really hard for me to comprehend a love that wants all of me. So often I set myself apart, sure that this love cannot be for me really because I am too bad inside, sure of an angry God and that I deserve punishment. As a child my abusers convinced me utterly of my evil, the awful things I did and would do and the awful intentions and desires that were inside me. They set up a world where I believed they were the only ones who knew the terrible person I really was and the only ones who could stop the terrible consequences if I did what they demanded. They proclaimed their love for me but looking back I don’t know how I understood this love or how the supposed love was shown. In a way might it have been simpler if they just outright hated me?!

The understanding of me and of love that this left me with is so far from the love of God. He created us in His image. When we messed up, He sent His Son Jesus, right into our dark and confused world, drawing us back to follow Him to God the Father. He didn’t demand our perfection. Rather the opposite. He takes on all our imperfection, suffers and dies for us, and rises again, so that weak as we are we can do the same and follow Him to His Father’s house. The fact Jesus wants me, only me, all of me, is something it will take me a long long time to truly understand. The Cross is a good place to start and ask Jesus for the grace for His truth to replace the lies and confusion in my heart, so that I can lay down all of me and let Him love me, even though for all the years I have so wanted to believe, I don’t know yet what this kind of love is.

My prayer for you today is that Jesus show you tenderly how He loves all of you.

Ginny xxx

With thanks:

Image 1 from Mount Carmel Edmonton

Image 2 from Slideshare.net

Image 3 with thanks to Bertha Chelemu from Sermon quotes.com

Gesthemane

Today is Holy Thursday, or Mandy Thursday. Today we remember – and share in – Jesus’ institution of the Eucharist, the Last Supper where He gave His Body and His Blood for us, so that we should never be apart from Him again. We also recall Jesus’ prayer and suffering that night in the garden of Gesthemane. We wait and watch in prayer.

I was not well enough physically or mentally to go to Mass tonight and watching at the altar. I have been trying to pray, read, listen at home. I wanted to find some words to say, some hopeful answer or some words to write here…. and I can’t. I don’t know what is happening to me. And I feel so guilty. In the liturgy of today, my God and Saviour Jesus has just given the most indescribable gift to us that makes us one with Him forever. He is about to suffer death for us. For me, so that I am lifted up with Him in His resurrection to God. And what do I feel? I feel empty, blank and cannot see for panic and hurt and darkness. Right when I should be thankful, grateful, filled with hope. Maybe what I most hate about this illness, and about myself as I am with this illness, is that unbearable emotions block out everything even what I most believe to be truth.

Jesus asks his disciples “Will you not watch one hour with me?” They also struggled. They were overcome with exhaustion, confusion, grief and fear. Jesus went away a little distance to pray and returned to find them sleeping.

Will you not watch one hour with me?

Here I am, Lord Jesus. My Jesus, I am here, but I do not know what to do or say. I am with You, yet I fear. You give Yourself to me, yet I lose hope. You died for me, yet I deny You and forget You when I despair and when I am consumed by anger or fear. You call me Your own, but I do not know who I am and I’m terrified of what is inside me, of my “others”. You are Love, You made me to love, but when it matters most, I do not feel.

Right after the Last Supper, came the darkness and agony of Gesthemane. Christ was still to go through His ultimate suffering and sacrifice. There was still the Cross, and still the Resurrection, without which everything before would have been meaningless. The way was not instantly rejoicing and light and the disciples did not yet understand what was to come and that Jesus would be risen from the dead. But the darkness and confusion did not mean Jesus’ love was gone away. It did not mean He had abandoned us. Rather, in suffering His love was about to be poured out for the whole world. Everything and everyone was part of His redemptive plan.

Please Lord Jesus, help me know that when it is dark You have not abandoned me. Please help me lay down now the terror of what I am, the terror that I am beyond Your help and beyond Your love. Because that denies the enormity of what You did for us, when I think You came for everyone but me. Here I am Lord, all of me. Please give me the grace to know You came for me.

Xxx

Trying not to choose destructive “safety”

I’m buzzing with anxiety and I don’t know what about. There are loads of things I have been really worried and upset about. But I can’t work out what’s bothering me right now. My stomach is knotted around a cold ache. An actual physical pain. My head feels the same as when my thoughts spiral but there aren’t any thoughts I can catch, just dizzy blankness. My legs are shaky and I’ve lost balance several times. It’s different from the dizziness and fainting that comes with the POTS. I wish I could make it stop. My tablets I regularly take in the evening usually sedate me a bit but it isn’t working. If I could walk for ages, or go running, maybe it would channel the feeling out of me (but I can’t since I can only walk a few yards with crutches).

If I knew why it would help. It’s scarier when the feeling is separated from thoughts. The emotional state seems to have a tighter and limitless hold on me even if rationally I ought to know it will pass. An emotion that shouldn’t be unbearable becomes so because of confusion, fear, and I realise now, the dread that is wrapped up in the associations of previous experiences of this emotion (abuse, being trapped, feeling guilty, feeling unable to stop terrible things happening because of me).

I desperately want to numb it and stop it. Drink, or cut, or binge, or take enough tablets to knock me into sleep. That seems to be the default response my mind and body make. I’m asking God to help me stay right here and feel and know I am with Jesus. This week leading up to Easter we are particularly close to Him in the suffering He went through so we could be with Him. In this small struggle that feels big right now, He hasn’t left me. I will keep on reaching out for His hand, praying and reminding myself of His goodness. Every moment is His way of coming to us now and sometimes we are with Him on a steep path, a storm or a lonely place. What matters is we are with Him.

It seems I’m saying what I really want to believe, rather than give in to the false security of numbness through destructive actions.

Jesus, please hold me, Mother Mary, please help me.

To be continued…

Ginny xxx

Easter crafts – letting the light shine through

We made stained glass window pictures this week at the day centre where I volunteer with elderly people. In a small group we made three pictures – loaves and fish, the Cross and the sun rising above a tomb with the stone rolled away. Here’s the Cross (please excuse the scribbling where I’ve removed anything that could have identified the location; I’m probably being over-cautious but still…):

I made the templates and then we laid them on laminator pages, filled the designs in with tissue papers then added the top sheet and laminated them. This gave them a shiny finish. Once cut out we attached them to window panes to let the light shine through. My inspiration came from a YouTube video of Christian seasonal craft ideas.

It was trickier to do than I’d expected and tested my patience! The tissue paper did not stay in place easily especially when people with limited movement were handling it. Too easily it could be knocked, or the static between the tissue and the laminator sheets pulled pieces out of place. Surprisingly perhaps, all the clients enjoyed it and persevered. It helped that this week everyone seemed curious and wanted to be involved. With clients who often feel depressed or otherwise unwell, this isn’t always the case. This week the clients’ enjoyment encouraged me to keep going even when I thought everything was going to go pear shaped.

Thanks to one of the other staff members we were able to read a bit about how stained glass was and is made and where the colours come from.

We were very happy to do an activity strongly rooted in the hope of Easter. Of course compassion and generosity and love underly everything we do with the clients and we almost always learn, discover and receive blessings as well. However we wanted to do something explicitly exploring God’s gift to us at Easter. In our pictures, each side of the central Cross, the bread and fish represent Jesus’ presence amongst us, His feeding us, His Body given for us 2000 years ago and still on all the altars of the world; the empty tomb and rising sun represent God’s Son Jesus rising from the dead, as He is with us on earth so He is lifting us up to Heaven to be with Him where He is gone. The Cross itself we decorated in bright colours not dark. The Cross is deepest suffering but also and inseparably, our only hope, because there Jesus restored the ruptured relationship between God and man, so that we can now joyfully call Him Heavenly Father. There God’s light shines through to heal our broken hearts.

This Lent time seems to be passing faster and faster for me and I’ve felt I’m grasping at desperate moments to pray between crises, responsibilities, pain and dissociation. It was important to me to have this little time trying to reflect on the Easter promise with those Jesus loves so much, the frail and lonely. Thank you, Lord.

I’m praying for moments of peace throughout your every day.

Ginny xxx

Looking for an app to track mood and pain

I am seeing a psychologist at the pain clinic for a short number of sessions. When I was first sent an appointment to do therapy I was really worried and almost angry about it, feeling I’d had enough of therapy in other services where I couldn’t trust the therapists or the community team and I couldn’t risk making myself vulnerable again. On top of that I was sure the therapy would be from the point of view that nothing is wrong with me, the pain I have is unnecessary and my fault because I’ve rested too much and not pushed myself enough, which is an attitude I’ve encountered too many times on so-called pain management courses. Amazingly it has turned out to be a very different experience.

I don’t tend to find pain is terribly related to my mood, beyond the fact that I’m more anxious and low when the pain is worse. It’s also connected to flashbacks but I don’t quite know how. We identified in therapy today that I find awareness of my body very difficult. Maybe that is common in personality disorder and certainly in dissociative identity disorder.

I want to try tracking my pain and my mood together to see if this may show up any links I’m not aware of. I’ve done the two separately before as part of learning to pace activity (I did not find the recording gave me any new insights) but I’ve not really done the two together, not over an extended period anyway.

Phone apps exist to track your mood but I’m looking for an app that tracks mood and pain. Ideally I’d like an app where I could record a numerical score for my pain and my mood every couple of hours through the day, with space to make a brief note if something very significant happened (for example if I have flashbacks or an event triggers traumatic memories or dissociation).

Have you used an app like this and did you learn from it? Any recommendations would be very helpful.

Ginny xx