Returning to a Mental Health Ward

 

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My visit to a psychiatric facility to see a friend was never going to be easy, units such as this one were once my life, a life that felt like a nightmare I couldn’t wake up from. Though thankfully this unit wasn’t one I had been contained within and as such I felt just about able to venture through the locked doors on my own.

As both a patient and a visitor I realise that I dislike the feeling of containment that locked doors instil. It’s unpleasant to drink from plastic cups and sit on furniture clearly designed to be heavy duty and not comfortable. I realised that no matter which side of the room you are on, patient or visitor being observed throughout a visit isn’t easy. But at least I knew that unlike many occasions in the past, as a visitor I could simply get up and leave.

The visit has really made me think, I couldn’t help recalling the horrors of my times in psychiatric care last evening as I thought about the impending visit. The horrors of restraint, forced injections and demeaning observation levels which infringed upon my privacy flooded back to me, I doubt I will ever truly forget those days. Days that I can only describe as the darkest of times.

Unless you have actually been an inpatient in such facilities it’s hard to comprehend the feelings these places can generate. It’s hard to understand the fear and helplessness that they evoke unless you have endured it yourself. I have realised over time that compared to many Mental Health service users my experiences are unique, my inpatient admissions were lengthy and at times to a level most would never imagine. You see most people never enter this domain, very few service users are hospitalised, even less compulsorily detained under the Mental Health Act and even less sent to forensics services.

The visit today was a big step forward, I was there not for me but for a friend, who needed a visit from someone who wouldn’t judge and who could understand. My friend is currently facing a battle with Mental illness, she has been on constant observation now in hospital for over five weeks. She keeps wondering why the staff are punishing her and as a result she keeps saying sorry, but my friend hasn’t done anything wrong, she is unwell and that is causing her to self injure frequently. The observation levels are there to protect her, to help her deal with the illness that currently has taken control over her life, it’s not a punishment.

I sat and watched as nursing staff interacted with her, they were caring and compassionate and yet my friend is so ill she really doesn’t understand how much help these individuals are giving her. I have seen and witnessed first hand badly performing Mental Health staff, but today I saw staff who truly are a credit to the caring profession.

Throughout the visit which lasted less than an hour my friend desperately tried to fight the inner voices and urges to hurt, but every now and again suddenly without warning she’d be gripped into responding. I witnessed the nurses trying to help keep her safe has she tried and tried again to harm herself, the need to be fully alert became very clear. I tried to help by holding one of her hands in order that she couldn’t use it to self injure, I tried to distract her and help her to understand the reason she was on constant observation.

Though I found myself wondering if the observation levels I had endured were to protect me, when I was on constant observation it felt intrusive and seemed to be an over reaction. Will my friend feel this way when she looks back at this time, or will she remember how unwell she was? Will she ask me why I didn’t stop them or why I said that it was because the staff cared.

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My friend is somewhat medicated right now and so conversation is slow and not as easy or free flowing as it once was. It’s hard when every third word has to be her name as you try to get her to focus, it’s hard seeing her glaze over and no longer be fully conscious of the world around her.

I found myself wondering what had happened to my friend, we met in hospital and I’ve seen her unwell before, but never like this. This came out of the blue, without warning it just appeared one minute she was at home the next there was an incident and she was in hospital more unwell than at any other time.

Seeing a friend this ill is never going to be easy, but it’s even harder when you know that only a few weeks previous she was well. In fact just before the admission we had been laughing and joking as we paddled at a country park. I still have photos of that day on my phone, there is one of my friend sat next to our BBQ smiling, you see it was a truly great time for us both.
These were the days we dreamt of in hospital years ago, time when we’d both be well and could enjoy ordinary everyday activities. Now suddenly those days seem a long way off and that’s sad.

I have no doubt my friend will in time get better, she will respond to treatment and slowly be helped back to recovery. But it all seems so unfair, so senseless and so avoidable, if only she had the right level of care when she first left long term hospitalisation. Someone popping in every now and then after 24/7 care for over a decade was never enough, even I could see that.

For now all I can do is hope and pray, that she will recover and be able to gain back the life she so deserves. I will be there for her as much as I can, I will text and call her often and visit her when possible, you see she helped me survive some tough times and dark days. Now I need to be there for her, to understand and support her through these difficult times whilst reminding her of the fun we have shared and of the fun times we will share once again.

Copyright DID Dispatches 2014

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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

 

 

Mental Health – Patient centred care not profit centred care

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This week I will be travelling to visit an old friend, someone who I met when in hospital a number of years ago and to say I am excited would be an understatement. My friend was someone who in the dark days of  my hospital admissions was supportive and understanding, it was at a time just before my diagnosis, when I was switching a lot  and I stood out amongst the other patients as rather quirky and an easy target for bullying.

I carried my Ted everywhere in those days and so it was no wonder that I stood out like a sore thumb, others would either ignore me or complain about the fact I was in the wrong place and shouldn’t be in their unit. I remember being quiet, afraid and rather confused, I was losing a lot of time and felt very vulnerable and unable to protect myself.

The staff didn’t understand Dissociative Identity Disorder and would often make things worse instead of helping, they never challenged the negative statements that were said about me nor did they stop the bullying that I endured. But my friend she did and she was always willing to chat with me and sit with me, little things that made a big difference to my life back then. Our friendship developed over time and when I was moving on she was anxious that I wouldn’t keep in touch, but I knew that our friendship had been built in the darkest of times and was strong.  I agreed to keep in touch and so for the past 5 years I have travelled back to the south coast to visit her in the old units where I had once been. In the last year she was thankfully moved north and so the 10 hours of travelling we used to encounter each visit  is now just over 4 hours.

Each visit is special I know that both myself and my friend benefit from seeing each other, but this visit will be extra special because my friend is about to be discharged from hospital having spent far too many years in the hands of the mental health in-patient system. Last year she moved to a more relational based facility whose focus was on recovery and not profit, who didn’t use physical restraint to contain people but additional staffing who could offer support when needed.

Instead of being in the hands of people who could be punitive and punishing, controlling and demeaning she was suddenly in the hands of people who cared and wow what a transformation. In the space of a year she has moved from being a detained person to someone on the brink of living in the community in her own home, she is no longer detained and hasn’t been for many months now. She has become a keen swimmer and enjoys doing  lots of crafts, she now does all her own cooking and shopping, plus lots of other independent activities, this is a vast change for someone who has spent more than a decade in hospital.

This is a person who hasn’t committed any crime, she just happened to have the misfortune to be placed in a unit where profits were key and unlike me didn’t have the family to fight for her that I was blessed to have. Private Psychiatric hospitals which have the power to detain people are often not challenged about their quality of care, how they deal with patients or indeed how they perceive patients. I always felt like a cheque  for the private  unit where we met, a quick easy profit for the shareholders and they didn’t want to lose me or my friend.

Sadly for my friend this particular company held onto her for a decade, her funders rarely visited and never challenged anything they were told, so she remained locked in a unit that was clearly unsuitable and clearly not helping her recovery. Thankfully last year things changed and she can start her new adventure, living life and looking towards her future, something I think she had given up any hope of having.

This week we will celebrate her progress and her impending freedom from psychiatric in-patient units, I am hoping to find out what things she will need in her new home, so I can put together a few things for her new start. I want my gift to be just right this is after all a momentous event and she leaves care with nothing really. Most of all we will have fun catching up on each others news just like other friends do and though she is moving on in her life I have no doubt that we will still stay in touch.

But whilst she moves on, many more women and men will still wake up tomorrow  in units run solely for profit and not for care, for the benefit of shareholders who are concerned about the balance sheet and the return from their investment. I have no doubt some private facilities within the health sector are run well and with the key interest being the care and welfare of the patients, but many sadly are not.

Maybe its time that Clinical Commissioning Groups and other NHS  funding streams were made to set some stringent guidelines for private providers on what constitutes good patient care and a recovery ethos, I would suggest they ask former patients to establish these guidelines and at the same time to also establish a criterion for what we expect from the funders in respect of how they select placements in the first place. Mental health services need to be cost effective and that doesn’t mean cuts to NHS services it means less of our public money going into the pockets of private shareholders and middle men.

Copyright DID Dispatches 2014