Self harm and the attitudes of medical professionals

Self harm and the attitudes of medical professionals

 

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This week I heard from a friend who had to attend her local hospital to receive treatment as a result of self harm and her treatment was unfortunately not very helpful. This led me to thinking about the times I either attended A & E or was taken there by the police for treatment, usually as a result of self harming or being deemed mentally unwell and requiring treatment.

It is nearly ten years since my first ever hospital admission, but for many months before I had hidden the self harm that was taking place. I tried hard to wear long sleeves to hide the cuts and dressings which I needed to stem bleeding etc. I was determined not to require anyone to know that I felt so desperate and confused that I could only survive by self harming. This was in the form of cuts, burns, starvation, restricting my fluid intake or overdoses, by the time I was admitted to hospital my self harm was a daily occurrence such was the turmoil I found myself in.

I hid my self harm from medical professionals, my family and my friends no one but me; I thought, knew I was living this life. I can recall going out for days with the children carrying implements in my bag ready to harm, and hibernating in bathrooms and cutting during these days out. I would feel myself getting so distressed during the day that I couldn’t survive any longer and so self harm took place. Yet once it was done and I felt a wave of release that I had punished myself which I felt I deserved I could then calmly walk back out and carry on with life.

I was confused to such an extent that I believed I needed to punish myself because that way I would be safe from others hurting me, and I was terrified that past abusers would come and hunt me down and hurt me. I even had a notion that because one of my abusers was my mother that I was bad as I had her blood inside me, thus if I bled enough I would rid myself of her badness.

Now all this time no one knew how much I was struggling, the GP knew I wasn’t too great but all they kept saying was ‘take time out and relax more’, and ‘all women go through these phases’.
They never asked if I felt suicidal or what scale my mood was, they did eventually arrange for me to see a doctor and thereafter just told me I was on a waiting list to see a psychiatrist. Yet in the meantime I was continually told to ‘hang in there’, occasionally they’d tell me things would improve.

Of course things just kept getting worse and when I attended the GP one day and I saw a different doctor who asked to test my blood pressure; because I looked like I was going to faint, he saw the wounds that by now littered my arms. Recent cuts had been deeper and the blood loss alongside starving myself wasn’t helping me feel any better. It was then that he made the call and I was suddenly being sent to the local psychiatric unit for assessment. At this time I realised my eldest child had sensed something was wrong and had suspected I was self injuring, but we had both said nothing until I was en-route to the unit.

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A & E staff from the start were slightly arrogant and mainly uncaring, if I had to attend as a result of cutting I lost count of the times I felt to blame by their attitude towards me. It was as if they weren’t best pleased to be treating me after all in their eyes I had self inflicted this injury upon myself, they never looked beyond the injury to the person. On only one occasion can I recall a doctor being helpful, he was actually concerned for me wanting to know why I hurt and was I getting help for my mental health. He treated me like a human being and not an attention seeking time waster which is what many other medical professionals seemed to treat me as.

The sad fact is the attitudes that I faced ten years ago still exist today, that means the medical profession has failed to learn about or understand self harming behaviours in a decade. That concerns me because I am aware of the efforts of so many different groups including government health organisations whose aim was to educate about self harm and improve outcomes for patients. A decade ago these organisation were trying to produce guidance to end the stigma that exists around those who self harm, if attitudes haven’t changed does that mean their efforts failed?

Self harm is not something we should ignore or take for granted for behind every scar, every injury there is human suffering. I didn’t harm for the fun of it and if I wanted to seek attention believe me I can think of lots of better ways of doing that. I wasn’t time wasting either, I was in acute emotional distress and I needed help. I couldn’t explain the anguish I was going through, the only way I could find to deal with the turmoil that was my life was to inflict injuries upon my own body.

Be that cutting, burning, overdosing or restricting the amount of food or fluids I took in, each act was either an attempt to deal with intense pain and turmoil, or the result of irrational thoughts. I wasn’t doing this because I enjoyed it, truth be known I hated myself for doing it, in fact I loathed my scars. The reality was I tried so desperately to avoid seeking medical attention as the last place I wanted to go to was A & E where I would be made to feel even more ashamed and be stigmatised.

Self harm controlled me a decade ago and at times of crisis it can still take control of my life today, it is sadly my default position when the pain is too much. Now when I lapse back into self harming I tend to injure in other ways in the hope it’s less visual, but it’s still harming all the same. Now I am not proud of the fact I self harm and I don’t want these feelings either, I would like to be free of self harm and yet I now understand it is a symptom of the life I lived as a child. A life which caused untold damage and will take a long time to deal with and heal from, my self harming is a symptom of my mental health not the cause.

The cause is my past and today I am having to face the harsh reality that I was betrayed, abused and psychologically damaged. Currently I am feeling emotions for the first time and I am starting to grieve over the fact I was hurt, I’m starting to come to terms with the dawning realisation that the horrific memories I hold and continue to recall don’t belong to my alters at all. They just carry my memories, and it was this body, it was me as a child and a teenager who the abusers defiled. Believe me that’s tough, it’s a harsh journey survivors walk there is a lot of pain and anguish that has to be processed and dealt with.

Perhaps when dealing with a person who is self harming instead of vilifying them and judging them medical professionals should remember to gently seek out the cause of this symptom. They should in my opinion treat those who self harm with the dignity, care and respect they so badly need, and they should afford them the right treatment to help them move forwards.

Copyright DID Dispatches 2014

 

 

 

Meltdown moments

Meltdown moments

 

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Meltdown moments are difficult they creep up on me from nowhere, they just simply overtake me and without warning I dishevel into a sobbing wreck. They are difficult even when they happen in my own home safely surrounded by familiar things and those who both understand and care. However when they happen in a busy crowded public place it’s even harder to deal with, harder to explain to others and to contend with.

I regularly seem to have meltdown moments, but they mainly happen when I’m safe at home, then I can simply just let my tears flow and allow the tension and emotional stresses an outlet. At times I take myself off to my room, lay on the bed and sob quietly into my pillow and I may hug Ted she’s used to getting wet from my tears.

At least two parts of me seem to cry, one is the emotional part of me who seems to carry a lot of my feelings and who can simply overwhelm me with feelings of anguish, low mood, desperation and pain. I am learning to communicate with her and I find that doing so is helping me at times to take control over the immense emotional turmoil she carries. The other part me my family describe as vulnerable me, this part seems to get overwhelmed with small things, is very sensitive and yes she’s my vulnerable me. These are the parts of me that I believe are susceptible to melt down moments, and currently between them we have a few every week.

Meltdown moments vary in duration and intensity, I find it hard to utilise the techniques I have to help with self talk, internal dialogue, grounding etc at such times, how do you think when all you can do is cry.

In the past few days I encountered a meltdown moment at the most inconvenient time one could imagine, surrounded by so many people and with no place to hide. This week I have been at a worship conference along with over a thousand other people, it was busy all of the time and there really wasn’t a quiet solitary place to hibernate too.

I was sitting on one of the sofas in the exhibitors hall, there were seminars going I and so quite a few people were attending these including my daughter, but I had felt unsettled and had decided to sit out and take some time for me. I thought I was doing ok, I had chatted to a couple of people and gazed at my phone. Then it started to build and I sensed it happening but couldn’t stop the feelings that were overtaking me, I felt overwhelmed and was ruminating over things. I hadn’t any control over this plus being in a busy environment meant I didn’t have any space to communicate with the other parts of me. I wasn’t able to take myself away either as I’m currently on crutches I walk at snails pace and I’m a bit unsteady on my feet.

I tried hard to hold in the tears which I could sense building up, I realised my gaze was now downwards and I was avoiding eye contact with everyone around me. Random strangers sat on some seats near me and I didn’t feel able to ask for assistance from them. I was focused on time and I guess clock watching as I knew my daughter would be back in a while, all the time I tried to counter any negative thoughts and the obscure thoughts I was having as a result of ruminating. I was feeling as if I was a bad person, that people for whatever reason didn’t want to be my friends, I was to blame for everything. My vulnerable me was struggling.

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I managed I’m unsure how to hold in the tears until my daughter arrived, she sensed something wasn’t right and I was able to share my thinking pattens with her and she tried to counter my irrational thoughts. We set off at my snails pace walk to try and find somewhere to hibernate close by, I knew I wouldn’t be able to hold in the tears long enough to get back to our hotel. I hobbled along with my face downwards to try and avoid people seeing how upset I was, the tears were by now starting to fall.

We found a bathroom and I hid inside as I cried and tried to compose myself all at the same time, it’s hard to cry in silence though. After a short while I felt I was able to leave the sanctuary I had found, my tears wiped away but by now it was lunchtime and even more people filled every space. I hadn’t really stemmed the flow just tried because as soon as we left the bathroom I could feel the tears building up again but now there wasn’t a place to hide. People sat at every table, queues were building and people congregated in almost every place it seemed.
I knew I was losing this battle and as the tears fell once more we found a table I could sit at, but I was surrounded by so many people they were on every side of us. I kept looking downwards as my daughter tried to offer comfort and reassurance, I tried to wipe away tears hoping that no one saw me crying.

My daughter phoned my son who was volunteering to ask for his car keys as his car was the nearest safety point we could think of, even though he was busy he managed to come over and helped too. Together the children gave me support and also hid me from others view whilst I shed some more tears and then regained my composure. The feelings of being overwhelmed still flooded me but I had at least gained control over the tears, talking things over with the children had enabled me to stop blaming myself.

We sat for a short while, I managed to have a drink, calm down a little and even had a brief walk back through the centre to see my son, who had gone back to his volunteer role. I felt exhausted though, physically and mentally drained my vulnerable me had had a tough time and that meant of course that all of me had a tough time.

In the end my daughter and I decided that it was best for me to leave early, I had and was in truth still struggling with a meltdown moment. They are never easy wherever they happen but in a public venue filled with hundreds it is so much tougher.

I realise that this part of me is just as entitled to express their feelings and tears as any other part of me, I only wish I could help them to cope better with the vulnerability that they seem to hold after all if I wasn’t fragmented we wouldn’t have such meltdown moments.

I’m slowly recognising the different parts of me, their characteristics and mannerisms it’s a learning curve I wish I didn’t have to go through yet I know I need to learn about me. I need to learn to understand who I am, what makes me me and all the different parts of me are important.

Meltdown moments are not easy, they are however a part of my life currently I wish I didn’t have them but then I still have days when I wish I didn’t have Dissociative Identity Disorder. No amount of wishing however can change the fact we do it is a legacy of the past, a past that means I have alters who are different parts of me.

Copyright DID Dispatches 2014

 

Catapulted Back in Time – The Reality of a Flashback

Catapulted Back in Time – The Reality of a Flashback

 

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There are times when it feels as if the past comes hurtling up behind me with the pure intention of side swiping me off my feet. Earlier this week was one of those times and it took all of my inner strength to prevent a full scale melt down or as I sometimes refer to it operation overload attack.

A few weeks back I encountered a body memory style flashback, a point when my body remembered just a small snapshot of the past. It was enough for me to feel terrified and yet insufficient in detail to be fully understood,though if I am honest I comprehended the general basics of the memory. At the time once I had regained my composure and calmed my senses down I tried very hard to shut out all I had recalled, in the hope that it would go away.

I guess I realised that I wasn’t really ready emotionally to deal with this and so it was a safety mechanism to try and block out all the emotions that I felt at that time. I went into my automative non-feeling personae to try and safeguard myself and in some way eradicate the memory which I hope beyond all hope to not be true.

Flashbacks are like that they creep up on you when you least except them and they overwhelm, they seep into my conscious awareness from the depths of the past hidden inside my brain and create chaos and havoc.

Well I truly felt I had boxed this particular one away, it felt as if I had scored a victorious goal, sending this memory reverberating back into the deepest depths of the past. How wrong was I though, flashbacks are never so easily dealt with in my experience and they seem to have the upper hand in this battle between the past and the present.

At the start of this week I had travelled to a conference with my daughter, we checked into our hotel and I felt fine that was until my daughter went to bring up the cases from he car. Sat alone inside this ordinary standard looking hotel room my mind instantly began to whirr and it was soon in overdrive. The images contained in that flashback flew into the forefront of my mind and I began to feel terrified.

My daughter’s return bringing me back to full awareness and in a way grounding me in 2014, and yet I knew the room was triggering me and I kept thinking why. I tried to bat it all away, telling myself internally that we were safe, my daughter was with us, nothing bad was going to happen. I didn’t want to tell my daughter I was having a problem for whilst I knew she would understand I didn’t want to start our time away like this. There was also a genuine fear that I would have to face the flashback and I really felt as if I couldn’t cope with that.

We made an excuse to leave the room and head to the conference centre and yet all the time I was having an internal conversation and trying to reassure myself and all the parts of me. We managed to avoid the room for a few hours but of course the inevitable happened and at the end of the day we had to return to the room.

Instantly I felt panic and fear welling up inside and my mind was racing at what felt like 100mph, yet I had limited control over any of this fear or dread. My daughter asked if I was ok and I had to tell her the truth we were far from being ok in fact we were struggling. Of course she asked why and it was difficult to tell her the room was triggering when her response was why? I tried to be very limited with what I said, I mean how can you share such a memory with a loved one, a memory filled with pain and anguish. All I have are fragments of an incident of trauma, one I do not doubt but at the same time wish it would evaporate and disappear.

I tweeted a few times about the fact I was struggling, and of course people were supportive, they were offering advice. I was grateful for the advice it was generally well intentioned and it was well received but it was difficult none the less.

I mean how can you tell your alters the other parts of me that you, that we are safe, if you don’t believe that yourself and that was my problem. I knew it was 2014, I knew the memory was of a time in the past but I still felt scared witless in that hotel room as I couldn’t be certain something similar wouldn’t happen to me now in 2014.

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The past was shaking my firm foundations today and it was winning well it sure felt like it anyway, and I was unable to rationalise my thoughts sensibly. I truly felt like this event, this traumatic incident could happen today and I wasn’t safe at all. No matter how much I tried to ground myself it wasn’t helping, but then I realised I didn’t need grounding I needed reassurances. Yes it was not just my parts but ME, that needed reassuring I needed to know I was safe. I needed to understand we were safe and I also needed to understand we could still box up this memory until we are ready to process it. The truth being I needed to comprehend that the control over this turmoil was still mine and I was equipped to box it away for a future time when we are more able to face it and the pain that it evokes.

I wasn’t able to sleep very well that night and at points I had recall of the snapshots of the memory which flooded my senses and overloaded me. I kept thinking that if this is true; which I believe it is, I will not be able to face it, to live with the emotional turmoil and aftermath. There were times in the night I has negative thoughts that I so wish I hadn’t experienced, those thoughts scared me so it felt like a bit of a double whammy attack.

Of course time doesn’t stand still and the night passed and as morning broke and my daughter woke I knew we had been safe there, nothing bad, nothing similar to our original flashback had occurred.
I have never been so glad to see dawn break and yet I feel guilty for the negative thoughts we had during the night too.

I haven’t had a therapy session this week as my psychologist was off on our regular day due to the Easter Holidays, of course I could have emailed him but how do you explain in an email this fear or anguish.

So for now we are living in this temporary state of limbo waiting to deal with this memory and the fear it invokes whilst also trying to contain the emotions of myself and all the other parts of me. I guess we are like many other survivors of trauma living life one step at a time currently and hoping we can deal with all the confusion and chaos that reigns in our life at the moment, one day soon.

 

Copyright :DID Dispatches 2014

Making my journey with D.I.D bear-able

Making my journey with D.I.D bear-able

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My Little parts are keen for us to introduce our special friend

Ever since my melt down point a decade ago I have had the company of a cuddly creature to keep me feeling safe. Initially this was a rather large creature who filled my arms and to be fair wasn’t so easy to carry. After 2 years my children and I chose a new creature whose size made it easier for me to carry and to discretely transport around.

Now my cuddly creatures are not live animals, no there are teddy bears called Cuddles and Ted, between the they have been with me throughout my journey through the mental health system. Now cuddles was rather cumbersome due to her size, it made it difficult to carry her around and so she is now retired to safe storage but Ted she has been with me for 8 years now and is a daily part of my life.

I’m not afraid to admit I have her, in fact until a couple of years ago I couldn’t leave her at any point in the day. Ted was carried in my arms daily, at home and when we went out she has been a source of comfort and in many ways has given my little alters a sense of grounding and security which has been significantly helpful.

Ted has been with me in all bar two of my acute hospitalisations, she’s been locked in a forensic secure unit and a non-forensic one too, she’s endured being detained by the police when we were repatriated to hospital in the cage of a police van. She’s been with me when I have tried to end my suffering and when I have self harmed, in fact Ted has been through every step of the journey since 2006. She has spent some 130 plus weeks in hospital, her predecessor cuddles spent approximately 65 weeks in hospital.

I guess when I carried her everywhere I stood out, she and I were a partnership and yes she was my security blanket if you like and some patients and certainly some staff found it difficult to deal with this women and her bear. I was unable to cope with life, with the memories and the flashbacks which filled me with dread and fear, with the confusion and anxiety I felt I just wanted the ground to swallow me whole to stop my anguish and my pain.

I can recall being verbally attacked by a stranger who took offence to me and my bear, he said ‘people like you should be locked away’ and I guess that was easy for him to say but I wasn’t always this wreck. I am a mum and I was once a wife, I worked hard and contributed to society I never expected to find myself in a mental hospital nor carrying a bear and yet it happened. I knew I had a tough start in life but I hoped I’d managed to leave it all behind, I thought I had, but then the reality was that it was just hidden away. You see in truth much pain and anguish from my past was hidden deep inside of me waiting to reveal itself when I was least expecting it. I didn’t need a random stranger attacking me for carrying a bear I felt bad enough about myself who I was and the fact I couldn’t cope.

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Ted has been a comfort that I needed through the darkest of days she has been there and I am not ashamed that I needed her. She has kept me grounded at times especially when I have suffered flashbacks and memories. I could keep telling myself & all my alters, all the parts of me that when bad happened we didn’t have Ted and yet now we did and that meant we were safe.

As a child I only recall one teddy bear he came from a bad person as a reward for being ‘a good girl’ for not telling when the person hurt me and yet I loved that bear. I remember coming home from school and my bear being gone, my mother had decided I had to be punished for something and taking that bear away was my punishment. I didn’t have another bear, unlike most children for me toys were rare and they came and they went as a form of control.

When my children bought me Cuddles I was elated and so grateful and yes she served me well when I first hit melt down, but her size made her harder to carry. But like Ted she took so many of my tears as I could hold her and let out the pain that ripped deep into me at that time, I find emotions so hard that it’s impossible for me to explain them to others easily, to express them and yet I needed to.

My cuddly friends have been a part of each day now for a decade and I doubt I could have managed without them, it felt like they were attached to me, it probably looked like that to the world. We were this person who went everywhere with her bear and people became used to that, some became so accustomed to her they no longer saw her.

About two years ago I made the decision to put Ted inside my bag when I went out, she was still with me 24/7 but she was no longer a visual constant in my day to day life. I remember the first time I placed her in my bag I felt bereft, but I knew it was the right time to stop carrying her in my arms all the time. Part of my decision was based upon the fact that my constantly carrying this bear had caused me significant muscular issues which required physiotherapy treatment. For years I had held her in my arm so had held my arm in a bent position this had caused muscle weakness and tension and when I realised that all this pain and discomfort was a result of my needing Ted I knew I had to take action.

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For a further year Ted was still a constant, she was carried around everywhere I went, the doctors, the shops, even for a McDonalds. Then one day I forgot her she was left sat at home on my bed and I ventured off to an appointment, by the time I realised we didn’t have time to return to get her. I had to face the fact that we would have to survive without her for these few hours and of course we did, we managed and it led to more and more organised opportunities where Ted stayed home. I had some control over this so if I was struggling or facing a difficult time Ted came along, but if I felt we could manage well then she stayed home.

Now Ted lives on my bed and there are times she comes with us, so every time we attend psychology she comes along too. When I face Care plan meetings Ted comes too, holidays and other times away from home involving overnight stays she is part of my luggage. But I can now manage without her when I am shopping, or attending the GP’s, visiting friends or going for a coffee. Ted probably spends 50% of her time on my bed and 50% of her time in my bag or on the sofa, it’s a far cry from my carrying her 24/7.

This week I’m attending an event which means I’m away from home, so Ted comes too she will stay part of her time on my hotel bed but I know she’ll be with me when I need her. There will be times when I do need her, times when I feel vulnerable or I am switching more and I need to try and ground myself.

Now it maybe hard for people to understand why I a grown women need a bear but of course parts of me are little and need the comfort a bear gives. She also allows me to know that the past is over and that is so important to me. I am fortunate that my family accept her as a necessary part of my life currently, they don’t nor have they ever judged us. In fact my children who are adults themselves will often say hello to her and they occasionally buy a new outfit for her. It’s as if they understand the role she has and continues to play in our life.

I never expected this small bear Ted would become so important to me and obviously carrying her everywhere day in and day out she has weathered quite a lot, but I can’t imagine replacing her she will just age and become more loved as time progresses. She may not come out with me as often and one day she may just live on my bed, but for now Ted will keep playing whatever role I and all my parts need her too. Be that grounder, comforter or as a sign of reassurance Ted is a significant part of my healing journey and I’m glad she is part of our life.

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Copyright: DID Dispatches 2014

CHANGE

CHANGE

 

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Facing a period of change & uncertainty – I am slowly realising why I find change so hard

This week I have faced some changes in my daily life, for the past 21months I have had a regular Personal Assistant one who all parts of me had become used to. This was a person who we felt comfortable being ourselves with, a person who wasn’t going to run a mile if we suddenly switched alters, and who seemed to understand D.I.D. This week that person has moved on to pastures new and thus the search now begins for a new person to help support me.

This of course is not so straight forward, finding people who want to support someone like me is never easy and I need someone who is doing this as a vocation and not just for a wage. I have had my fair share of support staff since I left hospital and we have had seen both good and bad examples of support staff.

Given I am trying to lead as normal a life as is possible with Dissociative Identity Disorder I don’t need people to treat me as if I’m incapable or some sort of invalid, I need people who empower, encourage and support me. I guess I need them to help me redevelop skills that I lost during my lengthy stays in hospital when I did become institutionalised and to learn skills which because of my past have never really fully developed yet.

My PA’s are the lifeline that helps particularly when I switch alters to ensure we keep safe, that help us when we struggle and find ourselves ruminating or with thoughts of desperation and self harm. They are if I’m honest a crucial element of my being able to stay out of hospital, I don’t think that I could have stopped that revolving door of admissions without them.

When I first came out of hospital I hadn’t made a meal or a drink in more than 2 years, I had literally done no activities of daily living unsupervised for over 30 months it was so deskilling. I remember at the start asking for permission to make a simple cup of tea, I felt intimidated by the kettle, I hadn’t used one in what felt like forever and I certainly hadn’t been allowed to just get a drink at anytime of the day or night.

Hospitalisation was dehumanising in so many ways, imagine having to ask for every single drink being forced to drink from a plastic beaker and knowing the staff control everything and could and did quite often say No to a drink. Well that was what life was like for me in the secure units, it was simply controlling, demeaning and soul destroying. Acute wards were slightly better there was a drinks machine that operated set hours and as long as it worked offered some choice, but still the staff or the hospital managers dictated the times we could drink, often 8am till 11pm. One ward I was on allowed 6 drinks per patient per day which worked as long as no one used your allowance as well as their own, thus robbing you of a drink. The staff seemed unable to see the injustice if a patient managed to use all their allowance and other patients too. It was just simply impossible for extra drinks to be provided it felt like a form of control and one I never quite settled with.

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So when I came home it did take a while to get use to the fact I didn’t need to seek permission anymore, that I had freedom and choice. It was the same with food, I’d lived in a regime of set meal times, set food and often not that tasty either. If I’m honest the control I endured was similar to that I faced as a child, my main abuser was a primary care giver and she controlled most of what went into my mouth. Food wasn’t fun very often in fact it was a form control and punishment, thus to this day I have a problem with eating. Being in a controlling hospital environment didn’t help me deal with my eating issues it just exacerbated them and recreated traumatic situations and triggered past memories.

Because of the control in hospital and the deskilling it caused my support staff are important and they help me in so many ways, I am certain that currently they are a necessary part of my life and so finding a new one is a challenge. I need to replace my PA as quickly as possible in order to maintain progress, this is an important issue I am so determined to maintain the progress  I have made thus far. The departure of a PA is  always going to result in a period of change and uncertainty, it’s simply impossible for such events to not cause change and uncertainty, but this is something we have to deal with.

So now as one chapter ends my family and I face a bit of a challenge as we search for a new PA, and belief me that isn’t easy especially for someone with Dissociative Identity Disorder. As one of the difficulties that I have is that I find trusting people really tough and of course it’s not only me who has to trust but all the alters too. Now yes I understand my alters are parts of me but all those parts need to learn to trust individuals and because of the past we all have issues with uncertainty, new relationships and having to basically learn to trust a stranger.

Then of course there is the issue of change, having a new PA is a change which won’t be straight forward or easy. I find change really tough to cope with be that a new person, new place or new situation change is fraught with anxiety and leads me to feel really unsettled and destabilised. I’m already having to do work internally about the changes we face in preparation of a us finding a new PA. I have spent the past couple of weeks preparing myself and my alters; the other parts of me, for the departure of the PA who had become part of our regular routine.

Change is tough for many reasons, but I guess I lived in chaos for years, my childhood was filled with change, be that different homes, schools or abusers. Change usually meant something bad in those days and I believe it has shaped how I view change to this day.

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In the past year I have faced many changes, I have lost one therapist and gained my psychologist, a significant friendship has ended, a relative has died, my care plan has changed and now this current change. Yet if I’m realistic we have coped with all the other changes this past year we have dealt with them and survived so there is a chance, a good chance that we will deal this latest change.

I am aware of the issues, aware of my difficulties with change and trust and I have the support of my family who want so much to ensure we employ the right person to help me keep moving forwards. Perhaps we are slowly over time getting better at dealing with change, it’s just a challenge after all that we have to face and deal with.

Hopefully in a few weeks I’ll be able to write about how I’ve coped with this change to my daily life, hopefully it will be a positive update. I guess I can hope that this change is going to be ok of course I don’t know and that’s what’s scary, but then in all truth nothing in anyone’s life is ever certain. My main task right now is to try and keep all of me settled so that we can deal with this change, so that we can overcome this legacy from my past of fearing change and learn to deal with the issues of trust and change. Wish me luck!

Copyright DID Dispatches 2014

 

 

Searching for a good nights sleep

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Sometimes it’s the small things of life that impact me the most, in particular those issues that are key to living, especially as I live with Dissociative Identity Disorder. Sleep is often something that evades many of us, but when night after night it’s impacted by one or more of my alters it can become a huge issue.

I seem to go through peaks and troughs when it comes to sleep, for a while it’s not an issue I sleep well and manage to settle quite quickly at night. Then of course there’s the flip side those times when sleep evades me, night after night after night. I seem to have entered such a phase right now and it’s driving me slowly crazy each night I try hard to get a good bedtime routine together yet somehow all my efforts are in vain.

This past week I feel like I’m facing a losing battle I’m desperate for sleep and yet each night it’s as if I switch, lose time as I make my way to bed and then I’m awake for ages. My brain wakes up and when I switch back I just can’t settle, it’s obviously part of me or parts that are not keen on being asleep I just wish I knew why.

I have been trying those recommended routines of winding down, relaxing, a warm drink, you name it we’ve tried it and yet it doesn’t work. No one it appears has ever written a book of self help techniques regards sleep for those who dissociate yet the main stream books are useless.

Last night I lay there desperate to switch off my brain which felt like it was on overdrive, I couldn’t stop thinking about silly irrelevant things. I couldn’t say that one thing was worrying me because I seemed to flit from one thought to another and none of it made much sense. I guess it’s not about the thoughts at all they are just a useful distraction to keep us awake into the early hours of the morning. I know I need to find out why sleep is so hard in order to solve this issue and yet that is not so easy, I am desperate for sleep it’s just other parts of me are not.

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I spent sometime last night well in the early hours of this morning trying to solve what feels like an insurmountable problem, trying to talk internally in the hope that another part of me would give some clue as to why they want to avoid sleeping. It’s kind of like talking to an inanimate object which doesn’t respond back, so very much a one sided conversation. I’m not sure what the experts would say to all this self talk, I’m sure some would question it and label me in some way. Yet it is my only hope of finding out the solution to my problem, my only way of getting my sleep back on track. It’s also one of the main techniques that’s helped me in the last few months and that I started following the advice of my psychologist, so I’m sort of trusting his advice and this technique.

Last night didn’t bring any clues except a sense of dread about sleep, why am I or parts of me dreading sleep, what is it that seems to bother them so much they want to keep me awake for hours?

I wish I could answer those questions I wish I could fathom this issue, but sadly I’m still in the process of sorting this issue out. I know an answer will come I just have to accept it’s going to take sometime. I think if I’m honest I know that there are times in the year when certain dates trigger us, worry us more and cause all sorts of issues. I guess if I’m honest with myself it’s more than likely that this period is one of those times, a date that for some reason causes part of me to feel more afraid of sleep, or more likely afraid of the night. I may not know why yet, but I’m confident that one day I will know, one day I’ll understand and all of these difficulties will make sense.

I know that sometimes having Dissociative Identity Disorder is a challenge, a challenge that seems too great, or perhaps one that feels as if you can’t win. Yet I know deep down we are strong, we survived this far and we will survive this period of sleep disruption it’s not too big a challenge it’s just a hill we have to climb. The joy will come once we have climbed the hill as it’s always easier on the other side, we will make it and we will look back on this time and think oh yes that was tough but hey we made it.

It’s often the tough times that makes us stronger and a better person, that’s been my experience and it’s what carries me through. I know I’d love to sleep well on a regular basis and yes there will be times we do but like most people we will have times when sleep is an issue. I just have to keep focused and remember we can get back on track this won’t last forever.

Until then I’m going to be continuing to utilise all those self help sleep hygiene techniques, I’ll be doing more self talk and internal dialogue. I will be using art to help the other parts of me express their feelings and to communicate with me and I will try hard to listen to my alters and respond to their feelings. Most of all I won’t give up hope or trying, I may have less sleep than I’d like right now but I’m still going to enjoy the Easter period and try and keep motivated. Life with D.I.D is a challenge, a bit like a bumpy twisty road with ups and downs, that challenge is one I’m willing to journey in the hope of building a future out of the darkness of my past.

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Copyright DIDDispatches 2014

Its time to learn about Dissociative Identity Disorder

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I am often faced with stories from others with Dissociative Identity Disorder who have encountered medical professionals who don’t understand or have any knowledge of D.I.D. I myself have had to deal with both ill informed and often sceptical professionals who to be honest have done more harm than good.

Yet in all honesty there is little reason for psychiatrists, psychologists, GP’s and other healthcare professionals to be aware of Dissociative Identity Disorder,the usual channels of guidance available to them have little if any information of Dissociative Disorders. Which is both unjust and alarming as estimates of the prevalence of complex Dissociative conditions is around the same as that of Schizophrenia for which quite a lot of information exists.

This lack of information doesn’t mean that healthcare professionals can be excused though for their lack of knowledge, as in today’s technological world information on both Dissociative Disorders and how to treat those with a condition like Dissociative Identity Disorder is readily available. You just have to search a little harder perhaps than other conditions, but the information is there and from reputable sources too.

Treatment guidance is available from the International Society for the Study of Trauma and Dissociation. This detailed guidance paper for professionals and can be found at http://dx.doi.org/10.1080/15299732.2011.537247  Whilst the site also contains a wealth of other relevant facts and information and it’s definitely worth exploring to find out more  http://www.isst-d.org

Furthermore other useful easy to access educational tools are available, one that I recently had the privilege of watching was a preview of the latest DVD ‘NoTwo Paths The Same’ from First Person Plural, this DVD is designed to explore the phase orientated treatment described by the ISST-D.

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The DVD was well received by both professionals and those with D.I.D. In fact it’s a great tool for educating yourself about D.I.D and understanding how to work therapeutically with Dissociative Identity Disorder. It is in my opinion a must for all healthcare professionals, including psychiatrists, psychologists, psychotherapists and GP’s. It is useful also to survivors, partners and others too who wish to have a better understanding of the therapeutic process and Dissociative Identity Disorder.

The DVD features seven people, including 3 experts by experience, 3 clinicians and a partner of someone with D.I.D.
The clinicians include a Clinical Psychologist based in the NHS, and 2 Psychotherapists, all of whom use the three stage model in their practice with D.I.D clients. These aren’t just any clinicians but people with decades of experience of working in this field and between them they have a wealth of knowledge. The 3 experts by experience are people who live with and are receiving appropriate long term therapy for their D.I.D. This really is produced by people with a wealth of knowledge of Dissociative Identity Disorder in other words they know what they are talking about.

The film focuses upon the different stages of treatment including Stabilisation, Working through Trauma, Consolidation and Integrated Living, Hope and finally a Partners Perspective. It’s been interesting to view the whole DVD at home and understand more about the therapeutic journey of healing that I and my alters are on.

I am so impressed by the DVD, it is useful on so many fronts I have asked my family to watch it as I feel they need to comprehend the journey I am on. I will be asking my community mental health team to watch it too alongside First Person Plurals first DVD ‘A Logical Way of Being’ which compliments this latest training and educational tool.

The DVD is available  to purchase at http://www.firstpersonplural.org.uk/sales and  more information can be found at the first person plural website, whose address is on my resources page.

Educating yourself about Dissociative Identity Disorder isn’t hard it just takes a little initiative to search for the information that’s out there. Be that through the sites I have mentioned in this blog or by watching this DVD, or utilising the wealth of knowledge that exists on many other sites too. I will be updating my resources page in the next few days as it’s important people know where to look for guidance, accurate information and advice.

I truly believe that it is important people understand the impact trauma has upon people’s lives and the issues of living with Dissociative Identity Disorder. That’s one reason I started this blog, I was aware from my own experience that a lack of knowledge existed and I live with Dissociative Identity Disorder on a daily basis and face the impact of that lack of knowledge. Sadly I have to deal with the aftermath that is often caused by well meaning professionals and individuals who don’t comprehend my condition.

In the future any well meaning professional who demonstrates a lack of knowledge or understanding that I encounter will be being given a copy of this blog alongside a copy of my updated resources page in the hope we can educate them and help others along the way.

 

Disclaimer: I am a member of First Person Plural alongside other relevant organisations, I have personally chosen to highlight this information and have not been asked to do so by any organisation. 

Copyright DID Dispatches 2014

Headache nightmare -the pain of Dissociative Identity Disorder

 

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One of the difficulties I encounter with my dissociative disorder is the awful headaches which can plague my days and my nights. They tend to be random in pattern and frequency so it is impossible to predict when they will suddenly strike.

Headaches often follow or precede a period of significant switching or come as part of a period of stress or anxiety. This week has been particularly bad for me as we suffered headaches on three consecutive days at the start of the week, these rendered me incapable of functioning in a way that impacted significantly upon my life.

On Monday following a positive and productive therapy session during which I felt I had made a breakthrough, I felt exhausted and I am not sure if the tiredness contributed to the initial headache or not. I was also facing a period of stress, somethings were going on in my life which were triggering me and generating stress and so potentially this caused me issues too.

The stress continued into the next two days and thus the headache seemed set on staying around, now unless you have had such a headache it’s hard to comprehend the impact or the pain. I felt as if my head was going to explode, it was full of pressure and the pain was so bad at times that I couldn’t cope with any light. I felt like a hermit hiding inside my house with the curtains drawn in broad day light, a cold compress on my head and sunglasses on to shield me even more from any light that remained.

Now normally when I encounter a switching headache it can last up to 24 hours but no more, this week they kept on coming, weakening a little and then crescendoing to a peak of pain again. In the end desperate I visited my GP’s which I am loathe to do at the best of times and they suggested I take a third pain killer.

On Wednesday I was so doped up on pain killers that I couldn’t function at all, but I had been crying so much with the pain it felt impossible to go on, you see the difficulty with such headaches is that not only do I suffer but my alters do too. Try explaining to a little alter that this awful pain will pass It isn’t easy and they don’t really understand at all, if you have ever encountered a poorly child you will understand the difficulties. At one point I was crying in pain and I couldn’t say whose tears they were, mine or the little parts of me or both.

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Headaches do pass but on this occasion it took three days and a lot of suffering before it went and of course I am always conscious we could suffer another headache at any point, such is life with Dissociative Identity Disorder.

I’m aware that I am not alone in suffering from headaches or indeed other somatoform symptoms, it’s part of having a trauma related condition. The body sometimes exhibits the pain of trauma and psychological suffering in a physical way, be that a headache or indeed a pain in my stomach or other physical conditions.

I know certain times one of my alters suffers the most excruciating abdominal pain and before I was diagnosed with D.I.D, I underwent so many tests to try and establish what was causing this pain and all the tests came back inconclusive.

It was only many months after my diagnosis that I began to understand this pain which came and went without warning, was attributed to a different part of me, it’s part of her memory I believe and my body exhibits that pain in a physical way. This doesn’t mean the pain isn’t real, it is actually very real yet instead of being the result of a physical condition it’s the result of my trauma, it’s a somatoform symptom.

I guess its a bit like when people feel sick when they are anxious about something, the sickness is as real as any other form of sickness, yet it’s root cause is linked to the anxiety rather than any bug or virus.

This week I cannot be certain if my headaches were linked to the switching or indeed the stress I was feeling, but either way I know it is part of the legacy of being a victim of trauma, a legacy which sadly lasts long after the event.

I am aware that many people I know with a trauma related condition be that Dissociative Identity Disorder or Post Traumatic Stress Disorder suffer from physical illnesses or symptoms which stem from their trauma. It is I guess part of life that we have to contend with, a part of life that often gets overlooked by professionals and yet which can cause significant disruption to our lives.

I was told once of a famous quote about trauma I think it sums things up really well, it certainly sums up me, my alters and at times our life. The quote goes something like this:

‘TRAUMA SURVIVORS HAVE SYMPTOMS INSTEAD OF MEMORIES’

I have found out to my cost this week that symptoms have plagued me, caused significant disruption to my week and lost me nearly 3 days. 3 days that I can ill afford to lose as I try and rebuild my life, work at understanding my condition and my alters, the other parts of me.

This week it feels as if I am playing catch up as we try and regroup and work at calming those alters disrupted by these symptoms and the pain. I’m determined to not let the symptoms beat me I want to move forward, it’s important to me. Yet I do wonder if the people responsible for my trauma ever really understand the pain and the damage they caused, sadly I very much doubt they do.

Copyright DID Dispatches 2014

Accepting my alters, facing upto the past.

 

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This past weekend I had the privilege of attending a conference on trauma and dissociation, it was an interesting event and very informative. As I sat listening to one of the speakers they said something which led me to think about myself, my past and my alters which I thought I would share.

When I was diagnosed with Dissociative Identity Disorder initially I felt very perplexed, in truth it didn’t seem real, this diagnosis though it seemed right somehow sat uncomfortably with myself. It was I believe the fact that the lead up to diagnosis was chaotic and at times frustrating, people would tell me for example that I had done this or that and I knew very well that I hadn’t. I thought at the time everyone else was making these things up and suddenly I was faced with the dawning realisation that in truth it was me that had been wrong. Some part of me had been angry, some part of me had been drawing like a child, some part of me had skipped as we fed the ducks, I could no longer deny this reality that I was a person fragmented and with various parts, parts whose existence I had no idea of.

Following my diagnosis I called my parts names, I felt of them as separate beings because in all truth they do have their own thoughts, feelings and ways of perceiving the world. Therapy in the early years seemed to allow me to place the horrific memories of the past which had been unveiling themselves to me for a while by this point, on the alters, these memories belonged to them and certainly not to me, Carol.

As a multiple fragmented person, I was someone who had dissociated since a small child in order to avoid the pain and suffering inflicted upon us, the alters held and in many cases still hold that pain and those memories. It was therefore easier for me to allow there to be a very distinct separation between myself and the alters, it allowed me not to face the harsh reality that these dreadful memories belong to me. This denial allowed us a chance to live this rather chaotic life existing with D.I.D, losing time, switching uncontrollably and with a huge brick wall between me and my past. Of course I had no real control over this amnesiac barrier or the losing of time, chaos and switching which were and still are part of my everyday life.

Denying the memories as my own, allowed me the space to function at least in part and to not fall apart into an even deeper crisis. I convinced myself that whilst I knew logically the alters were a part of me the painful past was theirs to carry and not mine. Denial worked at protecting me from the heavy burden of the truth, the truth of my childhood.

 

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Over the last few months through the work in my psychology sessions I have stopped being so blinkered and I now accept that the alters are parts of me, yes we all have our own feelings, thoughts etc but in truth we are a fragmented, dissociated person who has one body with lots of different parts. The alters well they carry my memories not theirs, yes they endured the pain and the suffering whilst I dissociated but in truth it was this body of mine which suffered those terrible things.

Today I now know that I dissociated multiple times as a child and that at these times other parts of me were created to hold the memories of that time for me. The other parts of me, my alters have taken the burden for years of holding those memories away from my conscious being in order that I could function. Function that was until my melt down over a decade ago when the amnesiac barrier began to break and those memories that have so far leaked through became part of my reality. Yet denial still allowed me to cushion myself in a way by thinking the memories were the alters, I knew logically they were mine but I wouldn’t accept that fully.

Now I can hear the sceptics amongst the readers of this blog saying, how do I know these memories are true. Well it would quite simply be impossible to make up the things I have recalled, and the way these memories have revealed themselves is a clear indication they are true. All my life I knew I had a volatile childhood, my home life was not stable in fact it was violent and chaotic.
I suffered psychological abuse from a very young age, and some physical abuse too and I, Carol had carried those memories in to my present, but it was the worst of the trauma which I had dissociated from. I have Dissociative Identity Disorder and that isn’t a myth but fact, fact that is backed up by a wealth of professional expertise and significant research and medical knowledge. If people wish to be sceptical about D.I.D then that is their choice to hold that opinion, all I ask is that they allow me and the many others diagnosed with Dissociative Identity Disorder the right to hold our opinions.

Of course for me now I face the hardest tasks of all, 1, trying to communicate with and have some understanding of the other parts of me, 2, breaking down that amnesiac barrier one brick at a time and 3, accepting that the memories which have been locked away for so long are in fact mine.

These are no easy tasks, I have to learn to co-operate with my alters, I have to try and find ways to be able to control at least in part the switching and loss of time. I have to work hard to internally communicate with the other parts of me, and believe me this is both tiring and time consuming, it is ongoing and a part of each and every waking moment. There will be a need to allow the amnesiac barrier to be broken in order that the alters, my other parts can share with me the past they carry. Yet most of all I need to be able to deal with the pain of that past, the memories which for so long I have been protected from. I will have to face each painful memory one by one, deal with the pain it brings and that isn’t just physically pain but emotional pain too. I have to find ways to live in the knowledge that this body in its younger days was defiled, betrayed, mistreated beyond words and in many cases by people who should have cared for me an innocent child.

Accepting my alters are parts of me has so far not been easy, it’s taken me over 5 years post diagnosis to get this far. Now I face the hardest part accepting the pain and the past, I know this journey won’t be easy but that I am supported by a loving family, and have the help of dedicated professionals who will guide us on this path. I’m hoping I can conquer the denial which is such an intrinsic part of dissociation and find myself stronger, wiser and more capable from facing up to the past, my painful past.

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Copyright DID Dispatches 2014

Adventures in the Kitchen

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Learning to work collaboratively with my alters
Success comes in many forms and for someone like me it comes in ways others might just take for granted or feel are insignificant.

Yet I am slowly beginning to realise with the help of my psychologist that I can attempt these small steps of progress which seem alien and unfamiliar. Now not everyone with Dissociative Identity Disorder is the same, but for me I lack many skills which are crucial to everyday life. I switch alters in the kitchen and find cooking a bit of a disaster and I have spent so many years in this fog of dissociation that many developmental stages of life have passed us by.

I can at times be terrified of the phone ringing, overwhelmed beyond belief by paperwork and it’s not uncommon for me to pay a bill twice due to forgetting it’s been dealt with. Many things trigger me, well various alters are impacted by different triggers, sounds, sights, smells and events, the biggest issues being the bathroom which impacts a younger part of me and food which causes huge issues for us too; so having support has enabled me to function a little better.

However with support and guidance I am trying to help build relationships with the differing parts of me, my alters in the hope we can deal with some of these issues and learn the skills we have lacked for so long. A big part of this is about developing trust internally, building self confidence and utilising techniques we are only just learning about.

My psychologist is encouraging me to keep working at internal communication and to use this to try and encourage me and my parts to work collectively. Now of course I don’t have ordinary verbal dialogue with the alters, it is very much a one sided conversation inside my head currently yet that gives us hope.

Yesterday I set myself a challenge which I could only hope would work, my PA was off sick and the family were busy but we needed to eat. I’m terrified of food at times, we certainly feel guilty and bad for eating it’s as if somehow my default position is that we are not worthy of food and it’s bad, dangerous somehow. Eating disorders plagued us in previous years but I have now come to accept that we have to eat even if I don’t want to; otherwise the family and others will force us too anyway. This has led to one alter having a sweet tooth and eating children’s sweeties, but the rest of me eat out of duty with a sense of eating because we have to. Hence today food isn’t fun and the kitchen is frightening and triggering, so we often switch during meals and our skills in the kitchen are poor.

Yet with a sense of we need to eat in my mind I knew we needed to make tea, my worst fears were cooking two things at once as we burn things and switching mid way through leads to disaster. Following advice from my psychologist I broke down tasks and gave the other parts of me the task of telling me when the toast was ready, whilst I would focus on cooking baked beans. The tension was palpable in my kitchen but I kept telling myself and the alters we could do this, we’d be safe and I believed in them. Now I wasn’t alone in the house my son was around but due to his own disability needs he requires care so I gave him the task of if you smell burning tell me and if mum switches turn things off.

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We had no idea if this would work I had visions of burnt toast and burnt beans, really I am normally that bad on my own but I knew we had to try. It was I guess taking a calculated risk but it was a risk worth taking if we want to move forward. I couldn’t of course be certain any other part of me would listen, take notice of what I’d asked I had to trust them and yes that felt scary.

As I felt myself being pulled to look at the toast I began to believe this might work, the outcome was edible beans on toast. Yes we had managed to work together for a few brief moments, not to switch but to collaborate at achieving tea. I felt like I was having the longest internal dialogue with the alters as I ate, praising and thanking them for their help as I had been advised to do. I was in truth giving positive reinforcement to the other parts of me and in some ways to myself Carol, yes I felt pleased and in many ways proud of myself and the alters. I know I was exhausted afterwards it was extremely tiring and I hadn’t expected that strangely.

This simple tea was a huge success for us it was a step forward and it needed recognition, some of my alters had listened to me and acted as I had requested. I am so proud of those parts of me.

Whilst I cannot be certain we will achieve this type of success in the future we will certainly be trying again in the hope that me and my alters can learn to work together as a team.

Copyright DID Dispatches 2014