Surviving a Therapy Break

For the past couple of weeks my psychologist has been on vacation and that has meant no therapy for me. Whilst a couple of weeks may not sound like a long break it hasn’t been easy and I find such breaks difficult to cope with. The reality is that a two week break has meant I’ve had no therapy now for approaching three weeks and that is an extremely long time. 

Now don’t get me wrong I know my psychologist is entitled to his holiday and I’m grateful he only takes a two week break, I’ve had therapists who take a whole month off. Yet it is never easy for despite all the stabilisation techniques I have learnt I always seem to find myself struggling, when there is a gap in sessions.

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Now I’m fortunate in many ways as I can still email my psychologist if it’s desperately needed, though I am not guaranteed a response. Previous therapists have just gone off on a break and left me high and dry which believe me is much much worse.
The break this summer hasn’t been easy and I have tried to plan ahead in order to mitigate the impact of no therapy. So for the first week I took myself off on holiday, surrounded by family who I knew would support me if needed. Having something to distract me helped and the holiday did work for the first few days. The second week I made plans to go out for the day and took myself off to the middle of nowhere surrounded by the sound of a babbling brook and beautiful scenery. The fact it rained wasn’t an issue but despite the attempt to distract and fill my time I found myself struggling,
As more and more thoughts raced through my mind and I began doubting myself and my own self worth, I realised things were not going great. The longer the break the more I struggle or so it seems and by the second missed session I was floundering, in the end I had to resort to sending an email, disturbing my psychologist and admitting I was finding things tough. The main concern for me wasn’t a flashback or a memory as such, but the feelings of anger and frustration I felt about the abuse I had endured. I also found myself consumed with grief once again, grief about my past and grief that these things, these dreadful things hadn’t just happened to an alter, they had happened to me.

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In the end as I typed my email I realised I needed to vent, I needed to let go off the anguish that was consuming me, overwhelming me. I knew that the best thing I could do given I had no idea if or when I’d get a response and that even if I did my psychologist wouldn’t be able to rectify how I felt was to vent. So in true style I opened my car window and screamed at the top of my lungs and poured out the anguish and anger. I cried buckets in the process and I guess most of all I admitted to myself these feelings of grief that I held.
My screams and tears helped a little but they couldn’t take away my fears or concerns about messing up, or my worries that I’d get it wrong with my teen alter. Thankfully my psychologist responded the next day and his words well they kind of resonated within me. He told me not to forget I wasn’t meant to be my alters therapist, that I wasn’t in this alone and to remember we were a team. The fact that he can assist me in my sessions and help me to process the anguish, the pain and the grief is reassuring. The fact I’m not alone of this journey of recovery is a positive, the reality is I have a therapist willing to help me on my journey and together we are a team.
Yet of course the break in sessions has been difficult and I have found it at times over whelming, currently it is a team of just me and my alters for my psychologist isn’t here, he’s away. This coming week sessions will reconvene but as is normal I am likely to find it hard for the first couple of sessions after the break. I can’t help this its just a fact of life, for me a break impacts upon my trust levels and my therapeutic relationship with my psychologist.

 

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Breaks in sessions are never easy there have been times in the past when I have spiralled out of control and resorted to negative coping strategies. Yet today I find myself more able to cope and the fact I have email access is a huge benefit. The truth is being able to see myself as less isolated helps me and the stabilisation work we have done is really beneficial too. But an absence of two sessions is as much as I can cope with currently, I am so relieved that after this weekend my sessions recommence.
Looking back I’m glad I now work with someone who isn’t off a month at a time, the impact of that would I know cause me much more difficulty and hinder my long term recovery. I wonder if those therapists who choose to take a month long break realise the impact on their clients if they did maybe they’d think again.

Copyright DID Disptaches 2015

Communication breakthrough – building trust 

Trust is a key issue for me and it appears to be as important to my alters; the various parts of me. Over the last year I have been slowly trying to build a rapport with a particular part of me, a part who is clearly very fragile and who carries memories of a specific period of my abuse. Initially I spent time communicating using my one way dialogue, I talked and she I hoped listened, then with much uncertainty I began using Ideomotor signals and the dialogue between us began to build.

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Using the ideomotor signals she and I have been able to work together at having fun, so when I first went paddling in the sea I knew she was there. This part of me has tended to get overwhelmed with emotions and she was at the start much more likely to suddenly overwhelm me with tears and sadness. But the more I talked and the more we communicated using ideomotor signals the more these episodes have dissipated.
For the past year that dialogue with me speaking and her communicating using hand signals has progressed, I’ve got better at asking yes and no questions and she has begun to build up a rapport.  A  few weeks ago as I strolled on a beach I felt her around and suddenly realised that the thoughts in my head might well be hers. She was at least trying her very hardest to communicate with me in a different way. I thanked her and though she soon resorted to ideomotor signals I realised this was an important step for her and for me. But yes and no responses whilst great don’t allow much opportunity to mend the damage of the past, to rectify and heal the scars of abuse.
During my time away last week I sensed her presence a lot more and when I took some time to visit a spa and just relax she was right there with me. I felt a chance to allow her yet another opportunity to communicate with me so I acknowledged she was there and I told her that I wanted her to feel safe and trust me. I said her memories were important to me, I wanted to know them when she was ready to share.
There followed dialogue in a rather odd way about the fact she didn’t feel I could cope with the things she holds, I explained that I wanted to and that its vitally important for her and me to work together. I set out some pointers so if for instance I told her that if couldn’t cope with whatever she reveals I will tell her I can’t process that right now. I will acknowledge it though and we will together take it to therapy. Of course I had no idea if this would help her trust me enough after all trust is so hard for me, so hard for her too given my past.

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But as I sat in a relaxing spa room which smelt of fragrant flowers suddenly all that hard work began to pay off, for the first time she communicated verbally with me. Not just a thought not just a hand signal but out loud and clear and audible. I was a little shocked but also so excited and happy because I realise this alter now trusts me enough to start to talk. I now know why she finds talking so difficult, why I think emotions become too overwhelming for her and I know a little of the past she holds.
I don’t know major graphic details and I may never know all the finite detail but that is really not important what matters is that I have a general idea of what happened, how it made us feel back then and how it makes me feel today. The emotional impact is what counts not the graphic detail of abuse, but how she felt, why she felt and how I feel today. It’s about coming to terms with the abuse and the feelings more than the actual detail of what happened.
I am slowly learning a little of what she endured though when I dissociated and went away whilst bad things were happening to me. Strangely I’m not anxious about the possibility of her memories pouring out or that they may overwhelm me, I know I have put things in place to help keep me safe. I know I’m stronger and more able to deal with whatever this alter carries, more importantly whatever she holds has already happened to me long ago. I know this body of mine managed to survive the horrors that she holds so in theory I can survive the memories now.
I realise it may not be so simple or easy, life never really is and yet I know I’m not alone in this journey I walk it with my alters and in particular I walk it with a part who is slowly opening up to me. A part who is slowly building a rapport with me and building up trust too, she is for the first time in her life communicating without fear or repercussions.

 

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Communication plays such a vital role in my journey, in my recovery and communication doesn’t need to be audible or written. Communication can be in a variety of ways and there are different techniques that each of my alters prefer. Lucy one of my littles is shy and nervous but she is giggly at times too, her way of communicating is a far cry from that of my teen alter. Some parts communicate by being a voice in my head audible and clear, whilst others may use drawings, thoughts or feelings.
I know some people with Dissociative Identity Disorder find using a journal helps, it doesn’t work for me but that is ok we all find our owns ways of working with the parts who make up who we are. Right now for me knowing my teen alters finally feels able to communicate verbally with me is a break through, it’s a sign of trust and of progress. It’s a sign that all the effort we have put into dialogue and communication is worth it, yes it’s definitely worth it. Trust isn’t easy it may never be, but I’m aware not only are my alters trusting me more but I’m trusting them too, that’s a breakthrough for all of us, all the different parts of me.
Copyright DID Dispatches 2015

Breaking free from medication

As many of you who read my blog regularly will know I have been engaged in therapy now for just over 18months and if I’m honest my life is being transformed as a result. There have been many milestones along the way, from my adventures at the seaside to those in the kitchen and it’s certainly been an experience. This week I celebrated another milestone though that for me personally means so much, I have finally stopped my anti-depressant medication.

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Now this may not seem like a huge achievement to many people but believe me when I say that it is, after all I have been taking these pills for such a long time. I never thought I’d get to this point and it’s not been without its challenges after all my psychiatrist wasn’t on board with the changes. But there is nothing worse than a determined woman, a woman on a mission and I guess that was me.
Back in the 1970’s I was prescribed my first set of anti depressants I was a little short of my tenth birthday at the time I didn’t know what the pills were for, I just knew I had to take them. I knew they numbed my pain I guess and even if they didn’t I was made to take them by my mother anyway, my teachers were so concerned at the sedation they caused they wrote to my doctor explaining their concerns and fears, but little was changed. Sedated and numbed from life I entered my teens and twenties in a daze a drug infused daze not of my own making.

I stayed on medication for the majority of the next decade and by then they became my crutch. Joined by Benzodiazepines this cocktail of pills was my lifeline and right through my twenties and thirties these pills remained a present force in my life. Yes they’d be stopped and started by the doctors depending upon how my life was, but I spent more time on them than off and rarely had any time without either of them.

 

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I have lost track of the various varieties of pills I have been prescribed but recall Prozac featured highly in my thirties, there was propranolol and Sertraline, whilst Valium and Diazepam well they were my benzo friends. By the time I reached hospital in the early 2000’s I was stuck on anti depressants and then the medical profession placed me on a list of other medication. It became a regular cycle of tablets, the good old medical model of care and each time my medication was reviewed it would be added to rather than re-evaluated fully. Suddenly in 2007 it was decided that the new type of anti depressants didn’t suit me and so I was forced back onto old style drugs like lofepramine which I’ve taken for the past 8 years. I can’t recall a time I didn’t take some form of prescribed medication and that, well that became scary.
In hospital the drugs lists just got longer and longer as more and more drugs were added to the list, seroquel was stuck in there, despite me not having any symptoms that would warrant such a drug. It came to a head about three years ago when I realised I couldn’t think or feel in any way, I slept more than I was awake as a result of the cocktail of legally prescribed medication I was made to take. It was a feeling I remembered from my childhood and those early days of being medicated, I told my then GP I needed to try and sort out the sedation it was impacting upon my life and thankfully she listened. Slowly we reduced and then stopped the Seroquel but it did take many many months and when I suggested further reductions she said not unless your team approved, they didn’t.

 

So for the past couple of years I have complied with this guidance despite believing the drugs made absolutely no difference to my well being at all. I did manage to persuade the team to allow me to reduce the diazepam down from over the legal limit to an average amount, yet they didn’t want to go any further than a partial reduction. But that changed a few months ago when sick of the side effects of the lofepramine I spoke to my current GP, who was willing to help without seeking the teams input first, so we began a slow reduction of both the lofepramine and the diazepam.

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Each reduction had to run at least a month before we reduce further and every reduction was tiny in order to avoid massive withdrawals. Previously I encountered horrific withdrawals when refusing medication in hospital, my refusals back then were more about me trying to gain some control in the chaos of my life at that time. Of course serious withdrawals just led to forced medication and even more control, being exerted over me. This time around this was a serious decision made with a great deal of thought and self belief and to ensure my safety I read all the literature I could find on the impact of withdrawals and became quite hyper vigilant at looking for signs.

Twice we had to stall the reductions and let my body catch up with coping with suddenly not having as much of these drugs inside us. I have been quite persistent at getting further reductions and my GP and I have often laughed at the irony of a patient who is actually not asking for pills but wanting to stop them, it’s apparently rare. My diazepam reduction is still ongoing we have three more weeks to go before I hope we can finally say goodbye to the drug I’ve taken for the majority of my life.

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But this week heralded that moment when I stopped the last of my lofepramine, I’m keen to ensure that there will be no more anti depressant tablets in my medication cabinet. My poor team didn’t know a thing so imagine my joy at sitting in my CPA and announcing to the old team worker and my newly appointed care coordinator from the new team that I’ve reduced and come off this medication. The look on their faces was priceless and I’m glad I did this reduction the way I did, in my control and without their support.

 
You see I knew these meds were not helping me, I knew I wasn’t depressed, I knew my anxiety levels were significantly lower than its ever been. In fact I know that I feel so so much better as a result of stopping this medication, I know I’ve been proved right I didn’t need these drugs, they didn’t help me.

 
What has been the impact of all of these medication reductions, well for the first time in my life I am feeling real feelings, my feelings. I can cry tears that I know are mine, not falsely suppressed or brought on by a drug. I’m actually waking earlier than before and I’m coping really well with any changes in anxiety levels, I’m utilising alternative techniques to cope with life. Mindfulness is really helping me as is being able to talk about things with my psychologist, understanding why I cry and why I have low days is helping me to grow and develop.
I no longer sleep in the daytime and I’m managing to pace my life to make it safe and manageable, I felt able on Monday to tell the medical professionals that I know my body, my moods my emotions and if I need help I’ll ask, until then I don’t want them to force medication onto me. For the first time in my life I feel empowered and I feel alive.

 

Forty years of mental health sedation is quite enough and now I’d like to move forwards free from all the impact of chemical stimulants and suppressants, I want to fly I want to soar high and live the life I’ve never been able to do. This is a turning point and yes today I’m wearing a big broad smile on my face.

 

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Disclaimer : Please be advised never stop taking any medication without first seeking medical advise. Any prescribed medication should be taken in accordance with prescribing guidelines.
Copyright DID Dispatches 2015

Care Plan Meeting – treat me as an equal

In recent days I have begun planning for my CPA early next week and I started to think about the things I need to cover in the meeting. After all this meeting will involve my new care coordinator from the new team my care is transferring to, I haven’t met them yet. It will also involve my existing social worker and my psychologist as well as my daughter, who goes to represent the family and support me.
I know that in the past my interactions with health care professionals haven’t always set off on the right footing, I usually find it hard to trust new people. I certainly have difficulty when professionals treat me like some second class citizen and not the equal that I am. My last experience of the new team dates back some 8years; it wasn’t so great and so I do have some reservations.

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I so want to explain to these people that I am not like many of the people they will have worked with, I have a condition they may never have heard of for starters. I am at times able and capable to do most things and then there are times when I things are too overwhelming and hard, times when I need support and help and times when I need them to step back and let me get on with it. Of course those times fluctuate from one day to another, in fact from one hour to another, depending upon which part of me is up front and driving this body we share.
I want them to know how I find each day, what its really like to be me and yet I’m not sure how I tell them that. The fact is I’m not sure my current team get how complicated and complex life can be for me. I’m certain they don’t understand the juggling I have to go through each day just to stay on an even keel, so how can I really expect my new team too. Yet I’m desperate that they do get me and they get the real me, why, well if they misconstrue me then they will judge me wrongly. They will like many before label me, stigmatise me and make assumptions about me which aren’t true and yes that does bothers me.

 

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I know I need to say things at the meeting about how I’m doing, what’s going on in my life right now and yes I can tell them about therapy and what’s happening. Yet I feel drawn to tell them about the things I’m really struggling with, because I need them to know. Yes I have made huge progress in the past 18 months and I’m really glad that I have, but there is still so much I need to do. For starters I want to be able to understand why I’m crying when I cry and yet there are many times I don’t. I want to be able to stop worrying about being judged but it feels like a mission impossible currently for me.
I want so much to be able to sleep in Bertie bedroom, that’s the name I’ve given the room in order to make it feel less scary, yet right now I’m able to just manage sitting in there for short bursts of time and then I need to leave. I visit the room a couple of times a day to get dressed and undressed but that’s all really, I can’t face sleeping in there and I can’t say when I will. It is as I’m often reminded a work in progress and it’s been months of hard work and effort just to get this far, that’s the joy of fearing a room because of linked memories. My bedroom of course is safe; I know that, but bedrooms and beds weren’t always so safe and that’s the issue. I have to overcome a fear that is ingrained in me from when I was young and sadly it still affects my life.
I want to be able to sleep in a real bed and not face struggles doing that, and yet currently I can’t. In fact I’ve slept on a sofa for 9 months now and that’s not so easy to admit to a random stranger; who I want so desperate to see me as an equal. In fact admitting or discussing most of this to someone who can impact my life in either a positive or negative way isn’t easy at all. So my dilemma is do I tell them at the CPA what’s concerning me or do I sit and pretend everything is perfect just because I have a new team.
How do I really trust these professionals who have the power after all to detain me against my will, give me treatment I don’t want and who can forcible medicate me or lock me in institutions all under the guise of healthcare. The power imbalance that exists between me and the professionals is a bit like having a pink elephant in a room, we all know it’s there but no one talks about it.

 

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That power imbalance though is concerning to me, I don’t like feeling out of control and the fact the new care coordinator and her team can take control away from me is frightening. So as I plan ahead for the meeting that in truth can go one way or another, that could be either a huge success or a terrible failure I need to find ways to stay focused. I need to remember these people are not the enemy, they are professionals whose task is to help me recover and deal with my mental health. In truth they are as at much risk of being sectioned as I am, that power hangs over everyone of us no matter who we are, Doctors, nurses, service users we are all able to be sectioned if we are deemed unwell enough.
This meeting maybe a scary prospect but I realise it also allows me a chance to educate people about Dissociative Identity Disorder and about me. It offers a chance to show them that actually I am working hard, it offers a chance to demonstrate my desire to recover and live an effective life with DID. I know parts of me are frightened by the upcoming meeting, trust is a big issue for us and so getting to know new people is hard. But my job now is to stay calm, reassure my alters and focus on showing these people who I really am and how I expect to be treated as an equal partner in my care.

Copyright DID Dispatches 2015

Crisis services – my experience 

I read about out of hours services today and it led to me to thinking about my experience with crisis services in the past. The first time I encountered a crisis team or out of hours service my experience wasn’t great they seemed to totally misconstrue me and failed to help or support in any way. I can recall one time when they visited me at home and having decided that I was safe leaving me there in a crisis and in chaos. I was suicidal and desperate and so clearly losing time and switching, but they didn’t see that they just me as inadequate, dysfunctional and a nuisance.

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They left me alone and still suicidal and so intent on dying that in desperation I tried to harm and then I dissociated, during which time I took off only to surface a few hours later some 60 plus miles from my home. I was picked up by the police for my own safety after they saw the distress that I was in and I was taken to a nearby hospital, they assessed me and admitted me to hospital.

Crisis at home had failed me, sadly it is often what happens, for me at least.
There was the occasion when I couldn’t live at home and had no where to go, I had been in hospital and discharged just a few days earlier but I had no place to stay. I had self harmed and the police had taken me for an assessment at the hospital, I sat waiting until the crisis team arrived and then they didn’t even talk to me except to give me a list of hostels. I hadn’t gone to hospital because I wanted a place to stay, I wanted to die, I had gone there by force and against my will and yet I was treated like I was a nuisance.

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Then on one occasion I was at home and struggling, crisis care was put in place and so for a couple of days they visited me. I saw a different person on each day, I never saw the same person twice and after a couple of visits I was put onto telephone calls only. The calls would be brief, wanting to know how I felt and then not really being able to offer any guidance or support really when I said how bad things were. By day four I was discharged from the crisis team to my regular mental health team, I wasn’t any better yet the crisis team support was only meant to be brief. I guess it didn’t matter that it didn’t work, or that discharge to me seemed too soon, too swift. Two days later I was seen by my community team and they admitted to hospital, I spent six months in hospital on that occasion, so crisis clearly couldn’t help prevent my downward spiral.

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The crisis team in recent times has just been telephone support, but if I’m honest I avoid calling them unless it’s absolutely dire. If Samaritans are not able to help and I’ve tried everyone else I can think of, then and only then will I call crisis, it is a last ditch attempt. The last two occasions have been pretty much the same really, I call, I say I’m struggling and they go through a list of techniques to try. ‘Take a warm bath, have a hot milky drink, try a nice walk or have you watched TV, tried to distract yourself?’ these are their usual lines.
They never assume I might have tried these things before, that I might have already thought of them myself. It never occurs to them that I don’t actually ring them when a crisis starts, or that they are usually the last person I try. It’s as if the staff manning these services are reading off a predetermined script and are unable to offer any person centred approach of any kind.

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The last time I called I was desperately trying not to self harm, struggling with grief and the difficulties of accepting my trauma. I needed some help to try and keep me safe, I didn’t want wrapping up in cotton wool I just needed some guidance to help me, help myself. Some advice to point me in the right direction to prevent that slide back into harming. I was desperate not to self harm, desperately busting a gut as I fought to resist the urges growing ever stronger. I had already tried all their suggestions before I even called them. In the end the only advice was have another drink, try some art maybe and call back if your struggling still.

About an hour later I did call back, this time I got a different person who initially went through all the same familiar suggestions. Then I heard another phone ringing and the nurse on the end of the line basically told me she was hanging up on me as there was another call and she couldn’t help me. In the end I stayed safe but only thanks to the support of those on social media and then later my family. The crisis team didn’t even inform my local community mental health team that I’d contacted them and was struggling, how is that joined up care.

The crisis service were and I believe are unable to offer any support or guidance that is of use to me, after all they don’t even know my diagnosis.

In the past decade my encounters with the crisis team of two separate hospital trusts have shown me that their understanding of dissociative disorders is limited. Their ability to assist and offer support is limited, in fact for me they are not there in a crisis because they can’t comprehend me or my diagnosis and without that they appear to be unable to help when I need them most.

In the future when I call, if I call, I will explain what I need which is usually someone to help me mentalize things, someone to just listen, to know my pain. I don’t need pointers like a bath or a drink I just need five minutes of their time and for them to hear me. From now on I aim to take control of my interactions with Crisis services and hopefully that will educate them as we go. Maybe this way they can help me when I need it most, only time will tell.

Copyright DID Dispatches 2015

How Safe Are Your Medical Records?

This week I have found myself being challenged not to explode, not to get angry or annoyed when deep down I feel violated and betrayed. Over the past few months I have been trying to access old medical records relating to my time in various mental health units, some mainly NHS operated ones and my old CCG have been very helpful others sadly not so. The private sector operated Partnerships in Care have to put it bluntly been unhelpful, and they haven’t forwarded all the information I requested within the time period set by the data protection.

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Yet their letter this last week threw me into chaos and in a bit of a spin, as I wasn’t expecting them to tell me they couldn’t find my notes. But that’s exactly what these people are now saying, they appear to be unable to locate the notes for a 16month admission including daily nursing records, clinical team meeting notes and most important of all my therapy notes.

The half hearted apology they have sent me doesn’t even begin to do justice to the harm they have caused, in fact I don’t think anything will ever repair the damage fully. I feel violated I feel hurt and why, well in the 16 months I was under their care I divulged some of the most sensitive data to my then therapist and other staff. In therapy I was forced to be explicit, forced to dig into the finer details of my abuse even when I didn’t want to.
My then therapist was trained to focus on making me feel vulnerable and dependent upon her, the three sessions a week were heavy going and hard work. Due to all the internal physical security of locks and swipe cards that epitomise a forensic unit, once I was at a session I had to stay the course. There were many times I sat in silence refusing to divulge details of the abuse or of my feelings, I didn’t trust her but in the end I talked often in frustration and fear. I would find myself having an outburst demanding to go back to the ward, demanding she stop playing the control game she seemed to enjoy. Often in these moments of sheer frustration there were tears and that’s when broken and distressed my abuse history began to pour out. I gave explicit details and I even named my abusers, I talked about them and their actions in as much detail as I did when I gave evidence to the police.
So in our therapy session the discussions; which were always awkward, were detailed and graphic and I hated it, I hated myself and I hated the people who hurt me. But looking back over the years I have felt able to take comfort from the fact those sessions were confidential, well at least in part as I know often what I said was shared with my then clinical team. Yet I felt reassured thinking the hospital had a duty to keep my sensitive information safe, how wrong could I be.

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It has taken the company over four months to write to me and admit they can’t locate my notes, now I could understand his if it was one small file, a few pieces of paper but it’s not! It’s case notes for a 16 month period, that’s roughly 485 days of nursing entries, it’s approximately 150 therapy sessions, 34 clinical team meeting reports and 3 CPA’s, 2 renewals of sections and 2 mental health act tribunal cases and all the necessary reports that they entail. So I imagine it’s more than one little folder of medical notes, after all a 6 month admission without therapy or section paperwork led to 2 folders of case notes.
So I estimate Partnerships in Care have lost about 5 lever arch folders, containing my medical notes in which are some of my most intimate data. Yet all they could send me was a solitary letter saying ‘I apologise we can’t locate your notes’. When I spoke to their registered manager she knew very little in fact she couldn’t even tell me when they last had my notes, where they were or where they are now likely to be. I mean it could be London, Leicester or Leeds perhaps or as I now fear in some public site somewhere accessible to all or possibly dumped in some country lane.
The fact is sorry just doesn’t cut it as I know this is a flagrant breach of data protection and if this were the NHS or the police, people would be jumping through hoops to try and locate my notes. They’d certainly be aware of the data protection act legislation and they’d realise this was a serious issue.

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Now unfortunately for Partnerships in Care I’m not going away quietly I had already contacted the information commissioners office and they do now know my data has been misplaced. They also know it’s contains important data relating not just to myself but other third party individuals, namely my abusers, my family even my children. They are aware my therapy notes are in my opinion as important as my police video interviews, in that they contain the same level of sensitive personal information. I hope they are able to swiftly take action to ensure this private company improves its data management procedures.
I hope too that Partnerships in Care will respond to the letter they are to get next week from myself, copies of which are being sent to the various governmental departments; who pay this company vast sums of money to provide forensic and secure services. These include the local CCG and secure services sector who sent me to their establishments and yet failed to ensure they had adequate data storage processes in place.
My main questions to the company right now is what are they going to do to put this right for me, after all I’m the one whose records it appears you’ve recklessly disregarded and inappropriately handled. I’m the one who feels violated, who has worried over what ifs, like what if my notes are picked up by a random stranger. I’m the one who has felt terribly distressed by the loss of these records, after all I thought my therapy notes, my sensitive data was safe, sadly Partnerships in Care you’ve proved me wrong. They weren’t safe at all from the minute they were written, your companies sloppy data handling processes meant they were lost from the outset.

Copyright DID Dispatches 2015

Looking Back Life was worth fighting for

My first night in a Mental Health Hospital

The other night as I was settling down for the night I realised that day held a special significance, though not neccessarily in a good way. This day will always remain with me after all the first time I encountered a Mental Helath in-patient unit was a culture shock to my system.

I took to social media pouring out my thoughts as I reflected upon that day, upon my past and it seems apt to share those tweets now in their entirety.



  

 
I realise that 11 years ago I felt life was not worth carrying on with, but looking back I can see that what I needed was the right help, the right support. I guess I had got to a point were I no longer believed that help or support was readily available, my family deserved better than the burden that I really felt I was.

It took a while to get the right diagnosis and the impact of time in psychiatric services wasn’t easy for me or my family. But it came eventually and thankfully I was able to start taking those small tentative steps along the path towards recovery. I am still on that journey, yet I know now that I am stronger, more determined and more focused upon reaching that goal.

That first night wasn’t easy neither were many of the approximately 1400 other nights I spent as an in-patient.  But I can’t regret that night for without it I wouldn’t have recieved my diagnosis or the right help and I doubt I would have made it this far without either of those.
Copyright DID Dispatches 2015

When physical health and mental health collide – stigma ensues. 

Earlier this week I felt unwell and ended up calling my out of hours doctor, who decided I needed to attend my local emergency room. There followed a bit of a mad panic as the first responder medic arrived who duly began taking down my details and telling me an ambulance was on the way. My daughter ran around trying to get some things together to take with us as the medic began to do basic observations like blood pressure. A short time later the first of three paramedics arrived at our home and they began to do more tests, I live in a remote rural area so the hospital and ambulance station are miles away.

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The paramedic did some heart tracings and sugar levels and things and I tried to stay calm, except deep inside I felt anything but calm. My chest hurt like hell and I was starting to panic a little, all this attention was unsettling and when more paramedics arrived I felt well overwhelmed. Inside I was trying to communicate telling all my alters; the different parts of me, that we were going to be ok. I kept trying to reassure them and explain what was happening and what was likely to happen next.

A few heart tracings later and I was being whisked to the emergency room in an ambulance, the ECG monitor still connected to my heart. I was given medication to help with the symptoms and that in turn helped calm me down thankfully. On my way to hospital I remember telling inside that it was ok we’d probably be home later and all would be well, except I really wasn’t sure what was going to happen. The paramedic was great he asked me about any other health conditions and I’d said I have Dissociative Identity Disorder and he wanted to know more about it, he’d never come across it before.

The hospital staff were at first quite helpful, they did more tests and then we just had to wait for results. But then I noticed a change in attitude, it was odd but after I’d been put in a hospital gown and my arms and their scars were visible it seemed to change things. I’d like to think they were just busy but I realise actually it was more than that, there is and I guess always will be a stigma attached to self harmers and I was a prolific self harmer not that many moons ago.

I was sat alone in the hospital as relatives were not able to stay with the patient, something to do with space apparently. Yet for the little parts of me that meant fear and doubt creeping in, there we  were alone in a busy environment and so much chaos going on around us. There were people being sick, people shouting, people clearly more unwell than me and it wasn’t easy for any of me to be there. I tried to keep reassuring my alters and settling them down, but I was still suffering pain and I felt woozy so it wasn’t ideal at all.

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At one point I felt on the verge of tears, but I daren’t cry for fear of being judged which in hindsight was a bit silly, after all I was already being judged by my scars. I tried to block the emotions pummelling through and at one point I texted my daughter who was sat in a nearby waiting room and said ‘I want to go home’.  I knew the pain was subsiding yet I felt tired even unwell, but I just wanted to feel safe and I didn’t there. Staff didn’t speak to me for quite a long time, in fact I think I sat waiting for the results for over 2 hours with no staff interaction at all. If I’m honest I felt quite abandoned and that was quite hard to deal with. Now I know most adults would find no interaction ok, some would maybe find it hard but they’d cope and yet I was there with chaos going on inside my head and I didn’t feel able to cope. I felt vulnerable, I felt exposed and I felt unsafe it was so hard to just sit there with a hospital gown on, things stuck on me and a cannula in my arm.

When I eventually had a chest X-ray that felt worse, my radiographer was a male staff member and for me that felt too scary. I didn’t have the courage to say I can’t do this, to say I have a trauma history that makes this too hard, so instead I retreated inward and felt as if I was no longer in control of me. Whoever came out did an ok job they kept us safe and they began to deal with the doctor too, when I came back the doctor was asking me more questions about my health history and of course my mental health came up.

I tried to explain I’m in the process of a medication reduction and as such I’m reducing my anti depressant, but of course that gave them something to hang a label on me. The conversation revolved around who was supervising the reduction, was I no longer depressed and why such a gradual reduction. The logistics of reducing meds is a whole other blog, but I tried to explain to the doctor and yet I knew I wasn’t making many inroads into the stigma she clearly held.

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When eventually they said I could go home I was utterly relieved, and so were the other parts of me after all none of us were enjoying this time. My daughter helped me get changed back into my own clothes and that felt a huge relief and then together we left the hospital. On the drive home I sat and talked inside reassuring everyone and thanking them too, for they had been helpful and stayed  as calm as they could. By the time I got home it was the early hours of the morning and I was truly ready for bed, I felt exhausted.

But perhaps because I have alters, because I have D.I.D going to sleep wasn’t a straightforward  option. Little parts of me had missed out on their cartoons and they felt agitated and unsettled by our visit to hospital, the chest pain which had now gone had frightened all of me. I knew trying to sleep wasn’t going to work, I also had at least one part who was steaming mad at the stigma we had encountered. I decided to acknowledge the frustration being felt, I said I understood how it made us feel and I reminded us of just how good we are. I told myself that they had no right to judge me and it was their problem not mine, after all I don’t mind my scars or my mental health history it’s just part of who we are. I can’t help my past but I can help how I let it influence today and as such I can chose to not let the stigma and archaic views of a few medical staff hurt me.

I did settled down eventually to sleep, watching cartoons in bed as I tried to relax and calm down different parts of me. Since then well we have had more tests and more pain, but we are working through it as a team my alters and me. I guess that’s what I’ve learnt this week that if I face situations that freak me out or unsettle me I can deal with them if I do so as a team. A few years ago I would have just dissociated not for a short period but for days, I wouldn’t have coped with the stigma either I’d have reacted to it.

Perhaps the last few days have shown me just how far we have progressed in terms of working collaboratively.  I realise now that I need to accept stigma exists and whilst I don’t like it I can’t change other people’s ignorance. That doesn’t mean I won’t fight to end stigma, of course I will and I’ll continue to challenge where I can attitudes that need changing. Having D.I.D is a challenge especially when you are physically unwell, people don’t understand  it and they don’t want to either. Guess I have to work at educating people about this condition after all that can only help people like me in the future.

 

Copyright DID Dispatches 2015

Having Dissociative Identity Disorder Doesn’t Mean Life Is Over. 

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Just a few years ago at my lowest point I felt my life was over, I felt as if I would never be any good at contributing to society anymore. I didn’t feel like a great mum or wife or friend in fact I felt worthless and pathetic, I used to think about what my life could have been and how I’d failed. Of course the failure I felt back then was not really justified at all and yet I couldn’t shake of those feelings of worthlessness or of guilt.

I blamed myself for that breakdown point when life became too overwhelming and I could no longer hide the truth of my past. I blamed myself for that point when suddenly people were noticing I wasn’t ok and that I kept losing time and forgetting things. Of course now I know that really I was dissociating and as the wall of amnesia began to leak and my past hit me head on, well it all became too overwhelming.

That led to my self harm and my suicidal attempts, attempts I don’t regret but am glad we’re not successful. You see I don’t regret falling apart for by doing so I learnt what was wrong and I learnt the truth of my past.  I’ve learnt who I really was and the childhood I endured and I understand now just how strong I really am. The self harm and suicide attempts are just moments in my life, visual scars of the past I hid for too long and today they allow me to see how far I’ve come. There markers in the sand that show me where I was and where I am now and that is important.

Before I started that meltdown I had been productive, I held a job that I enjoyed and I contributed to helping others too. I found myself being a person who ran at 100mph, working, running a home, volunteering and being actively involved in community life. I had some physical issues that slowed me down at times and my mental health was never fully ok, yet I still felt I contributed to life and that was important for me.

So when I became really unwell and my mental health deteriorated it wasn’t easy, in fact being hospitalised felt as if my world had come crashing down. Suddenly I couldn’t participate in the things that gave me an identity and a purpose, rather than helping others I became a burden. I couldn’t sustain work and so was made redundant, that didn’t help me especially as it happened whilst I was in hospital. I was hoping to leave hospital pick up my life and carry on like before and then I didn’t have work to return too, I was deemed too mentally unwell or so it felt.

Ever since then I’ve either drifted from one crisis to another, one hospital stay to another, or care package to another. I haven’t really been able to move forwards, well not until about 18 months ago because then life began to change. It’s continued to change at such a pace that at times its felt surreal and I often pinch myself to ensure I’m not dreaming this. 18 months ago I felt desolate and confused and I had full time care, it felt like I just couldn’t understand D.I.D and I never would.

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Fast forward 18 months until today and life is beginning to change again, I now feel far more assured of my skills and of who I am and I have less support. It’s not easy having D.I.D but I now know enough skills to understand that it’s not impossible to live with either, it’s just slightly more complex but that’s ok. Yes I have to do far more than many will do just to ensure I function each day and to ensure that the day goes well, I doubt most people need to give so much time to the things I need to. Mornings are a crucial part of that daily process of stabilising me and that means all of me, including my alters the other parts of me.

I now have a fairly structured approach to my days, well mornings at least and I know that I need to pace myself, take time to do art and other activities. I’m learning each day and I can now deal more successfully with some things that used to send me into disarray, I cope more often than not with body memories and flashbacks these days. That doesn’t mean there aren’t  times when they overwhelm and cause chaos, it’s just it happens less frequently than it used to.  Instead of being an unbearable part of every day it’s once every few days now, for I have the skills to rationalise and cope better with them.

I’m still fragmented and I’m still not there at the end of the journey of recovery, but I’m moving forward and making progress. My attitude to life has changed dramatically and now I’m far more focused on my recovery and on my treatment than ever before. I’m able to have fun, to laugh, to feel and I don’t feel bad about giving myself time, or saying no to people. I’m learning that I’m an ok person and I’ve gained some ability to be more patient and less of a perfectionist. I don’t take things for granted though and know I have to work hard to sustain the progress I’ve made and want to continue to make.

I certainly don’t feel like my life is over or that I can’t contribute to society anymore, I don’t feel like life isn’t worth living in fact far from it. Even when my moods dip and I’m low I know life is still there for the taking, it is worth living and it’s worth fighting for. I’m starting to see and accept that I’m a good parent and a good friend and I’m starting to believe I can once again contribute to society.

Whilst I am getting involved in village life and doing things, I clear in my mind what is most important and that’s my recovery and my treatment they do come first, I’m also clear that any involvement I have is to be non-detrimental to me and that for every meeting I attend or project I’m involved in, there is me time afterwards. Art, fun, feeling, these are key parts of this and my approach to life now is so different from the past, it’s so much more healthy. I realise now healing is possible it’s not however a simple task, it’s an ongoing mission, a daily mission of recovery.

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Copyright DID Dispatches 2015

When the tears won’t come 

 

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This week I had a tough therapy session focused on processing some baggage from my past, yet despite trying to face up to the difficulties of my past the tears were not that evident. Now I did get a little emotional, but the full force of the anguish evoked by the grieving process as I recalled memories from the past just didn’t come through. I really felt the tears were just on the edge and so as I left my session I did expect them to start flowing, but they didn’t come.

I had a couple of jobs I needed to do and well tears at that time would have been an inconvenience and a little awkward. I think I was trying to stem the tide and so focused on the tasks in hand and blocked any emotions, by the time I was nearly home still no tears had come. I felt awful I was deeply saddened by the mis-mash of feelings whizzing around inside, feelings of sadness, hurt and a deep anguish that was wrenching at my heart. Yet for whatever reason when I had time the tears still didn’t come and so at home with a PA in place I couldn’t just hide and let go.

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At home instead I tried to keep busy, I tried to push on and well I couldn’t cry in front of my new PA after all what would she think. I longed for her to leave, I longed for time to grieve and oh did I want to grieve. In fact I knew that grieving was exactly what I needed to do, you see remembering the horrors of the past, knowing it’s true, yet again seals in my mind that I can’t deny I was abused. I so wish my abuse hadn’t happened and I so wish I could deny that it did, but the more I recall the more I realise I can no longer pretend this didn’t happen to me.

I spent the majority of the day trying to carry on, being stoical if you like and putting on a brave face, yet inside there was a deep hurting that so needed to be expressed. When I was alone I truly thought the tears would flow and yet they didn’t come, I talked internally, I tried hard to reassure all of me that we could grieve and it was ok to do so, yet tears remained absent. It wasn’t like I didn’t need to cry in fact I felt as if they were just there on the edge waiting to flow at any second, except they didn’t flow, they didn’t come.

That night I went to bed early snuggled up under my pillow fort, my hope was the tears would come finally and at last they’d flow, but in the end I fell asleep and still I hadn’t cried.  The days since then have taken a similar path I have felt like they are just there on the edge but then they disappear. I have let out the odd few tears, just a few seconds here and there but not enough to really let go of the feelings deep within. The feelings of anguish and grief that so need to burst forth seem to be having trouble being expressed, it’s often as if the dam is about to burst and I think I will cry uncontrollably, that it then simply dissipates away.

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Last night I thought it’s coming, at last I can rid myself of the desperate anguish trapped inside, but somehow I stopped those tears once again. When I feel like it’s ok to cry something happens and I need to stop myself, be it a phone call or a person walking into the room. I know I need to cry, I know part of me is worried about doing that and I know they are scared they have upset me. I’ve tried to reassure them and myself that crying is actually ok, that crying is an acceptable and appropriate response to have. Yet somehow the message isn’t getting through loudly enough and so I’m grieving in silence and I’m grieving without tears.

I know I need to grieve, it hurts to think this abuse happened to me, to know it wasn’t my fault and that I did all I could to stay safe. I know for a long time I used to think this wasn’t me, the abuse it happened to an alter not me. You see I truly felt no emotion, I had so limited a recall of that time, that in my mind the abuse didn’t happen to me. But as the amnesic barriers come down the emotions of that time are making themselves known to me, and now I realise that this, this abuse it happened to me. To come to terms with that is so hard, it’s so hard to grasp and so hard to take in fully after all I’d so rather it wasn’t the case.

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Accepting the past isn’t easy, accepting I can challenge those ingrained beliefs that crying isn’t something I’m allowed to do is equally as hard. Yet I know I need to do both and I know I so need to cry, to grieve, to let go of the emotions of the past and the anguish it evokes. But knowing and doing are two very different things and right now it seems doing is something I’m finding difficulty with.

Now I know at some point the tears will come, probably when I’m least expecting them and most likely at an inconvenient time. Yet I know they will flow it’s just right now that seems an impossibility  and so I’m left trying to find a way forward that allows me to accept and deal with these feelings inside. I’m left trying to accept that I need to not block my feelings or my tears anymore because when I do I end up in this predicament, when I so wish I could cry but the tears won’t come.

Copyright DID Dispatches 2015