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

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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

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

Sharing time and activities with my alters

Taking myself on a day out with my alters is anything but dull after all it’s a bit like a big family outing. Obviously there are challenges but those tend to be based around ensuring I allocate time for various alters and accept its ok to lose time and switch a lot.  Generally its accepting that I have to play the juggling game that comes as part of life with Dissociative Identity Disorder.

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Yesterday I planned to visit a woodland were I hoped to see bluebells, these are one of my favourite flowers as they remind me of one of the few positive memories from my past. I knew I was likely to switch alters and I also realised that there is absolutely no way I can give each part of me individual time. I planned instead to give time to various groups of alters so little me’s, teens/adolescent parts and then adult me’s as this seemed easier. It takes a great deal of preparation and lots of internal dialogue to make such a day possible and I have to be extremely conscious of everyone’s needs.

On arrival at the nature reserve I visited the information centre, were little me’s looked at the children’s activities on offer, they find such things interesting alongside of course the play area close by. Now at my age I don’t think It would look good if I suddenly tried to go on a swing whilst actual young children waited, so I have to try and explain this to those inside. We have an agreement that if it’s quiet we can go on them but if it’s busy its best we don’t. They seem to accept this but I do wish at times we had adult only play areas equipped with swings and slides etc.

As we ventured for a stroll into the woods my little me’s we’re excited at the thought of seeing bluebells and possibly deers which we had been told might be sighted. All the time I was communicating with my alters discussing what we were doing and seeing, I’m learning its vital I notice every change in my feelings as often this is a way of noticing who is around inside of me. It is a mix of one way communication and two way dialogue and it varies from alter to alter. Also I  sensed the switching from one alter to another that was happening during this time.

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There was great excitement as we saw the first bluebells, and lots of interest from many parts of me at that point. My teens and adolescents parts were more interested in the noises we heard, so the different birdsong and the noise of the rain and wind as it touched the leaves on the trees. It felt more intense with them and more detailed and my adolescent teen who enjoys talking with me as we enjoy the countryside near my home was keen to talk here too. I sat for a rest and she and I were able to talk, though we were soon aware of little me’s excitably watching a bird feeding close by. I had to try and play that juggling act of pleasing them all whilst balancing needs and that isn’t so easy.

As the bird flew on its way my adolescent was soon able to carry on having our chat, it was interesting to hear her enjoying this time. My teen who doesn’t talk was soon squeezing my arm, her sign to let me know she is around and we were then able to communicate via Ideomotor signalling. The sense I get from the emotions they bring forward is that they enjoy time to just be and time to be heard and that makes adult me feel better too,

I then took time for me, to stop the noise in my head and the thinking that rages on inside of me that often feels a bit like an out of control speeding car. So I tried to practice the techniques my psychologist has previously mentioned relating to mindfulness, though as I am still learning its not always so easy.  However sitting in the quietness of a fairly empty woodland with the birds playing their natures very own musical symphony it felt truly relaxing. I found it quite easy to focus in on the noises which surrounded me and was surprised by the variety of sounds. Time past quite swiftly and my mind settled down as did the various parts within, they didn’t go away but we’re just accepting that I needed time too.

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As we strolled back to the main centre and time for a drink the noise inside grew, I now faced the battle within as to which part of me would choose the cake we were going to eat. The little parts won and were soon trying to decide which of the yummy treats on offer we could have. It ended up with a gooey vanilla slice which tasted delicious and certainly filled a hole. Part of me who is worried about weight found this hard, but we did enjoy it despite the vast calories it contained. The Ducks that played outside the cafe window attracted little parts attention and they were soon very distracted by them.

As we made our way towards the exit I felt happy but exhausted, its hard ensuring all of me enjoys time together. I think it’s the fact I’m trying to get everyone who lives inside of me to co-operate and to start working as a team. It isn’t easy but I do enjoy the time we get and I enjoy knowing parts of me get to experience things they haven’t done so before.  Most of all it’s good to know that despite having Dissociative Identity Disorder I can live my life even if it’s more complex and challenging than your average persons.

Though our day went well it came at a cost and I lost time soon after we left as other parts of me took control of this body we share. I didn’t lose time for long, about an hour or so and I realised it was most probably because I was so tired. Today I have needed to rest and recuperate and I’ve started the day giving time to other parts of me, I will get time but I need to ensure all of me has time too.

But I can feel happy about yesterday because I know through our hard work and perseverance a lot of me managed to enjoy a spectacle of nature, that ‘carpet of blue’ as the flowers filled the woodland floor. It’s a sight I was glad I witnessed and the birdsong chorus we enjoyed, well that was the icing on the cake. Juggling demands and alters can and does have rewards it makes life easier in the long run and for that reason I will keep on trying to enjoy activities with all of me.

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Copyright DID Dispatches 2015

Funding Update

 

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An update on funding, well I have spent so much time chasing Clinical Commissioning Groups regards my therapy funding this week I think my phone bill will have quadrupled. However some slight good news came through at the end of this week which at least means my psychology session this next week will not be my last.

Despite telling me the decision to cancel my funding was concrete and non reversible, it seems that if you explain the guidance that CCG’s must operate under and point out you won’t just accept their decision, they take notice. I’m not sure if it was the numerous phone calls I made, my blog or the tweets that filled my time line on Monday and Tuesday of this week, but something made them think again.

I received a call from the team responsible for the funding from Shropshire CCG advising me that they had given some thought to the situation. They spelt out that the law says they do not have to pay for my treatment any more, but that Cheshire CCG now needs to and then what I was told stunned me. The lady said ‘However’ and then followed a pause that felt like it lasted forever as I waited with baited breath, the lady continued ‘we do feel it is important that there isn’t a gap in your treatment’. She went onto explain that whilst they negotiate with Cheshire, Shropshire will continue to fund treatment in the interim, to enable continuity of care. To be honest I didn’t believe her at first, after all I had endured so many closed doors just the day before when they showed no care or concern.

I’m not normally brave enough to ask for things in writing, but before I realised the words came tumbling out and she agreed to email me. Unsurprisingly I sat nervously as I waited, was this true had they had a change of heart, and then an email came confirming that for the interim whilst the two CCGs talk I’m not playing piggy in the middle. I asked Shropshire if they’d started dialogue with Cheshire and they said No, which I found a bit odd after all surely they need too, so in the spirit of helping things along I shared the telephone numbers of the opposite CCG with each of them. I’m hoping dialogue happens now as it most probably should have many months ago.

The call gave me a moment when I felt a wave of relief rush over me, immediately followed by worries over various ‘what ifs’ that crossed my mind. What if Cheshire say No, will treatment stop, what if Shropshire change their minds again, what if it all takes too long and funding isn’t sorted in time. Interim means just interim, short term, is funding within the NHS ever a quick process, I’ve never known it to be.

I have to confess I sent the email onto various people, to ensure my family and my therapist all knew that this decision had been made. I spoke to my current CMHT who were still very perplexed and felt truly in the dark about the entire matter, but I think relieved it was for now temporarily sorted. Then I just sat on my own and reflected upon the past few days and the future challenges we face. I cried part in relief and part in fear, such was the weight of emotional turmoil I have felt under this week.

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It’s clear I have really found this stressful and it’s an ongoing issue which continues to cause me anxiety, I’m aware that these funding changes also reflect other changes that I will now encounter. My CMHT is very likely to change and the hospital trust that will deal with me will change too, I don’t mind this as currently I don’t get seen in my locality and that I feel is something that should happen. I’m more prepared for these changes but I am still anxious about them, will the new team know enough about D.I.D?, will they treat me as a partner in my care not someone to talk down to, or someone they can do things too? I find I need to feel an equal partner in my care, my treatment otherwise I feel out of control and that reminds me of my past, my trauma. In my past I was controlled and dominated by my abusers, so if professionals exert control over me it has a negative impact.

For now I’m just hoping that when the changes happen we get off on the right foot, that if we don’t it can be rectified without too much grief. I guess I’m hoping it’s done swiftly and that all this uncertainty clouding my head over changes in services and funding is resolved. I have a great deal of recovering to get on with and so I’d like all these distractions to be resolved, so 100% of my energy is directed at moving my life forwards.

I’d like to settle things down a bit, as internally the past week has been chaotic, parts of me are fearful, were hugely impacted by the thought therapy was ending just as it had begun really. Parts of me really struggled this past week, parts I don’t know too well, are building trust with my psychologist even thought they haven’t to my knowledge communicated with him yet. They felt aggrieved, bereft even, at the thought someone they were just beginning to feel safe with wasn’t going to be there to help me deal with their memories and emotions. In fact he wasn’t going to be there to help them.

If I could say anything to my current CCG it’s that I wish they realised the impact of their decisions, how much torment, anguish and hurt it caused and I want them to know I’m truly grateful they’ve given us a reprieve. To the potentially new CCG I’d like them to see me as a person, to understand how much difference my Psychology is having upon my life. I hope and pray they make the right decision, that they honour the funding contract and give me the rest of the time I was assured of 14 months ago to undertake treatment. To my new Mental Health NHS trust, I’d like to say please see me as human being just like you, please treat me with respect and understand me, all of me.

As I write this I know nothing is certain, nothing is guaranteed and my future, my life and well being are no longer in my control fully, but in the hands of bureaucrats and medical professionals who don’t know me at all. It’s a scary time, but at least there is a sliver of hope that therapy will continue for a few more sessions at least. I guess over the next few weeks I’m going to have to learn to be patient and try my hardest not to worry more than necessary.

I will keep you posted on this continuing saga.

 

Copyright DID Dispatches 2015