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

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Update on Funding and transferring CMHT

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Funding as been an issue for some months now, well mainly the debate over which CCG is going to pay for my psychology sessions. Alongside this has been an underlying issue of a potential transfer of care from one NHS trust to another and of course as the patient I had little say in what was happening. At times I have felt frustrated and annoyed as professionals have made decisions which have an impact upon my life, it’s often felt as if those decisions could have been made swifter, easier and well to be blunt in a far better way. They have procrastinated over me and the financial implications when all I have wanted is a smooth transition from one CCG to the other.

Over a year ago I was told that the wrong CCG were paying for therapy and yet the talks between the two bodies didn’t even start. One claimed to send letters to the other and the other claimed not to have received them, in the middle of all of this was me. It all seemed to come to a head when a few months ago funding for therapy was suddenly stopped by the original CCG without warning.

Now I’m sure it seemed like a good idea to Shropshire CCG, a saving they could instantly make except it had huge implications for me. They said that as they had no legal responsibility to pay why should they and pointed me in the direction of the new CCG, who were now legally required to provide my care. That’s the impact I guess of Government changes to legislation. So I spent time worrying as therapy hung in the balance, numerous telephone calls and emails followed and eventually thankfully Shropshire CCG reinstated funding on an interim basis until they could negotiate with the new CCG . The new CCG responded well in the crisis and I was told by them last week that finally a transfer had been agreed between the two CCGs, so therapy is safe for now and I can breath a sigh of relief.

At the same time there has been ongoing discussions over the transfer of care from one NHS trust to another, I agree I need to access services locally and not from an NHS hospital or CMHT in another county. But at times in the past few weeks I have felt like a commodity, a commodity that is passed from pillar to post and back again. Ive been reminded so often of how much I cost the NHS and how much people see me as an expense. It doesn’t help ones self esteem or feelings of self worth to be reminded of the feelings I once felt as a child, feelings of being a commodity to my main abuser.

Whilst the transfer to a new CCG has appeared seamless I’m unsure if the contract issues between my Therapist and the new CCG have been resolved, I can only hope that is the case. However the transfer to a new CMHT and NHS trust seems less organised sadly and I feel lost in a mire of bureaucratic red tape and confusion. Most of the confusion stems from the fact I seemed to be the last to know about the transfer and that does seem rather wrong.

I haven’t met my new CMHT or the newly allocated CPN yet, that is scheduled for late June, but apparently if I am in a crisis or need help now I have to turn to them. Well that’s what my old CMHT has said on more than one occasion, except for a while I didn’t even have a contact number for these people.

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So yes I feel a bit like I am piggy in the middle between these two CMHT’s as the transfer clearly hasn’t gone so smoothly. I don’t blame my new CMHT at all they haven’t as yet met me, that will happen at the CPA arranged by my old CMHT, where I assume the formal transfer will happen. But my old CMHT seem keen to rid themselves of me and my costs ahead of that date which really makes me feel great.

When my old Care Coordinator visited last week, she told me that as I now had a new CPN from the new team when I need help I am expected to contact the new team. As I didn’t have any contact information for this team I asked how I was meant to do this? she seemed perplexed she had assumed I knew the contact information. So days later following my challenge that not having these numbers left me high and dry, she emailed saying oh you can use the old CMHT until it’s sorted. A few days later numbers for the new team were duly sent in a two line email that does just contain the numbers, so now I’m left wondering does that mean I use these now or do I use the old team?

You see I think the transfer has officially happened except the new team hasn’t even met me and I don’t know if they have a copy of my care plan or the latest reports from the psychologist. My family don’t even know I have been allocated a new CPN and I’m not sure if that person will have my contact details or my families, so it feels less than ideal.

It would be so easy to spiral into confusion, distress and a heightened sense of anxiety over all of this, it would certainly be easy to stress over feeling like a commodity. I have however been able to talk through these feelings in my therapy session and it has lessened my fears thankfully. I don’t know we’re I would be if I hadn’t been able to discuss these concerns so I’m grateful my psychologist was able to help.

Now I sit waiting for my CPA and am hoping things work out okay with the new team, I am still slightly anxious as each team I have been under differs in their approach. I just hope I’m not left feeling confused for too much longer and I hope they understand Dissociative Identity Disorder. Most of all I guess I hope they treat me as an equal and someone who has a say in their care, after all I have felt like a commodity and an object to be ‘done too’ for far too long.

 

Copyright DID Dispatches 2015

Sharing time 

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Sharing time can be an adventure, doing fun things can have a whole different meaning when you do things for yourself. This last weekend I took myself off to a sea life centre I haven’t ventured into one since my eldest child was tiny so that’s more than two decades ago.  But I didn’t go with children in the real sense of the word, but I did go with me, all of me and it was amazing.

Having DID means I can appreciate such experiences from a child perspective, I can look in wonder at things that most adults would just take for granted. But my little me’s can enjoy these things as if it’s there first time experiencing them and with the real wonder of a child, that in turn means I get to enjoy it to, if I work hard at staying co-conscious throughout such adventures. Now that doesn’t mean it’s easy but it does mean I get to have fun if it works well and parts of me get a chance to communicate with me in a far greater way.

The hardest part is often taking the time to do these things, be it going for a stroll on the beach, visiting an attraction or having some time to play. I am often not too great at sharing time and some parts of me don’t feel so worthy of time so they can easily make it difficult as well, yet when time happens and adventures begin its good.

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I’d planned to go to the sea life centre weeks before and so on the morning was a little worried when a younger part said she wasn’t worthy of the cost, which in her words was expensive. So with a huge amount of persuasion and lots of reinforced messages I assured her that we were worth this. So we stepped out into a sunny morning and ventured to the sea life centre with its penguins, coral reefs, rock pools and otters. Wow did I cherish the few hours we had in a whirl of childhood wonder and amazement, it was truly amazing.

I managed to keep a dialogue going with the younger parts of me and it was at times two way dialogue, so a big step forward from the one sided conversations I used to have. I listened intently at the gasps of surprise as we saw one new thing after another, the Penguins were cute and my littles found them real fun. The rock pool brought a new challenge star fish were there and young children were being encouraged to touch them, now I am clearly an adult and yet inside my littles wanted so much to touch a starfish too. I’d normally feel too conscious of the reactions of others around me to do these things, but the voice in my head was so excited at the thought of touching a starfish that I had to try and overcome my own fears of awkwardness. So we did stroke a starfish, well my hand did and my littles were fully in control and happy. You see to the world I might be an adult but inside of me is a whole host of little parts who never had these opportunities before. They deserve now more than ever to experience the joys of childhood that was so cruelly deprived from them and me.

We moved on to the otters who were a bit of an anticlimax as there was only one awake, but the next step was stingrays and they were funny and got quite a lot of attention. The jelly fish caused more wonder and my littles were very impressed at their beauty. The turtles made for great entertainment and the vast array of different tropical fish at the coral reef was a great attraction too.

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All the while as I wandered from stage to stage within the complex my little parts were talking away, telling me what they saw, what they liked and pointing out how much fun this was. If I’m honest it was fun for me too, I felt a sense of wonder that I’ve never really experienced before and I felt a sense of calm and inner peace, for once I am giving to myself and that feels good. By the time my adventure came to an end I felt so happy, so relaxed and I really felt I wasn’t alone, as my alters and I were enjoying time together.

It’s been a few days since we went and visited the sea life centre and yet that sense of childlike  wonder is still clear in my mind. I’m more determined than ever to do more days like this, it’s got to be the way forward after all it’s enjoyable and rewarding all at the same time.
Taking time for fun has really helped me this last year and this past weekend it’s helped me acknowledge my own worth and that improves my own self esteem. I’m aware that fun still feels alien and it will be for some time, yet the more I practice the easier and more natural it will become.

I am so looking forward to planning more fun days for my little me’s and I already have a list of places I’d like to go with them. I missed out on so much as a child I guess I’m making up for it now and whilst that may seem odd to some none DID people, it makes perfect sense to me and my alters; the different parts of me.

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Copyright 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