Parenting with mental health issues

 

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Yesterday I had time with my youngest son, we see him about once a week so usually try and do something together be that grab a pizza, go to a car festival or like last night just hang out. Each time we get some much needed one on one time and that seems crucial for both of us especially given the past and my mental health issues.

I try really hard to spend time with each of my children individually they need to know that despite my Dissociative Identity Disorder I am still their mum and that I love them unconditionally. I know that I am blessed to even have any kind of relationship with any of them, I mean I spent 4 years of their lives stuck in hospital. Time when in truth I should have been at home being their mum, doing all the things mums are meant to do but instead it wasn’t quite like that for us as a family.

Being a parent with any kind of long term illness makes things different but being a parent with mental health issues well that’s another story. My children have had to accommodate me and my bear, explain to their friends why their mum suddenly disappears without warning, for yet another hospital admission. I know it wasn’t easy for me, but I now realise it wasn’t easy for my children either to suddenly face all this extra turmoil.

I thought that for years I had hid my mental health issues from them, I didn’t realise I had Dissociative Identity Disorder but I knew I lost time and I knew I struggled. I knew my moods changed without warning and I knew I often struggled and hibernated. My main aim when my children were younger was that they grew up in safe and secure home, one were they knew they were loved. I thought I was doing quite well at hiding the truth from everyone, but looking back I realise the signs were all rather too evident.

The children tell me now that the diagnosis of D.I.D just made sense to how their life’s where growing up and that in truth they were glad that at last they knew why I had been as I had. They have recounted tales of the things they recall from their childhood that make me embarrassed and at times ashamed. Embarrassed because I can’t believe I did certain things and my attempts to hide the fact I was losing time didn’t really go as well as I thought. Ashamed because at times I wasn’t perfect, I did make their lives hard and I put them through such a lot.

Having a parent who self harms, isn’t easy for any child no matter what age and when they have to call for help because of the state they have found me in, that’s seems now looking back so unfair. Having a parent who disappeared without warning; as I attempted suicide, caused untold worry and stress, it wasn’t easy for them at those times too. As a family we faced some real difficulties because of my mental health and yet somehow today we are still a very strong family unit.

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When my admissions began they were teenagers, but that’s a time when children need extra security and stability because life is complicated enough. But I spent long periods in hospital and that catapulted my children into a cycle of hospital visits and long journeys. It meant my daughter had to grow up quickly and my sons had to deal with things their peers knew nothing about. They dealt with the fears of visiting me in various psychiatric units so well, but I know it wasn’t easy for them. In the secure units they faced air locks and security measures that seemed alien to us all, handing over their phones and keys and being frisked on the odd occasion. Their visits to mum were challenging and time consuming, driving for over 5 hours each way just to see me for 2 hours. Having our visits observed and their gifts scrutinised, these were not things my children deserved and yet they came regularly to see me.

My daughter she visited the most frequent, in fact in the local units probably every other day and when I was far away once a month. She’d sometimes come on her own or bring others to visit too and we would speak every day on the phone. My sons visited the local units a couple of times each week mainly because under 18 they couldn’t visit on their own. But once I was at the secure units and they were in university it became harder for visits to take place. Though they did visit at least once every 3 months and sometimes more frequently if they could, but we spoke regularly on the phone. In fact at times it was nearly every day and yet here they were studying hard for their degrees and I was miles away.

I never faced that empty nest syndrome parents talk about when their children fly the nest and go to university. I left my children before they left home, I left for that round of hospital admissions that took me out of their daily lives.

None of this was easy for any of us, and it meant that by the latter part of that cycle of hospital admissions my relationship with my children was strained and struggling, it certainly wasn’t that of a parent and child. But we knew we loved one another, and we cared deeply about each other, I wanted to know what was happening in their lives and I wanted to be a part of it. So we talked about my mental health openly especially after my diagnosis because it felt necessary if we were going to have any kind of relationship going forward. I suggested at first we just try and be friends, rather than them seeing me as mum. I think that’s helped I believe it’s given us all space to move forward comfortably assured that there are no expectations from one another.

The regular contact I had in those dark years meant I knew what was going on in their lives, well the basics. I knew the names of their friends and I knew the courses they were studying and where they lived. But there was still a lot we had to try and resolve and I needed to understand and accept, life wasn’t going to allow me to catch up the lost time, it wasn’t going to allow me to put everything right. But there was a chance of rebuilding our relationships and I guess that’s another part of this story.

I will write about our lives after my discharge from hospital in part 2.

Copyright DID Dispatches

Challenges of a Busy Week with Mental Health Issues.

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So far this week has been too busy, it’s felt like I have lots to do and my diary is full and yet I’m nowhere near as busy as my life once was. Busy weeks are something which I have learnt to try and avoid for with them comes additional concerns and chaos.

The more busy my diary is and the more appointments I have to attend, the less time I have to give to my alters, the different parts of me. That has been the case so far this week, less internal dialogue, less art and less cartoon time for my little parts. Of course there is an impact upon me when I neglect these things and I’m starting to notice that. Emotional overloads, switching and losing time all feel as if they are gaining speed and momentum these last few days. There is much more intensity with it all and yet I’m trying hard to keep fulfilling the plans in my jam packed diary.

My teen is being very emotional at times, I know this means she is finding things overwhelming currently and that’s difficult for me. Mainly because I don’t want to see her hurting and it grieves me to know a part of me is so desperately sad. I wish so much I could make it right for her but the truth is I’m not in a position to right now.

I have neglected her this week we haven’t had our usual conversations and I’m thinking that maybe that’s what led to her being emotionally overloaded. This afternoon I actually made a point of trying to communicate with her, I did the usual reassurance and then I apologised for not giving her time. My hope is that as we communicate more in the latter half of this week she will settle a little and her emotions which I feel, will not be quite so overwhelming.

My little parts have been very evident especially as I am switching from one part of me to another much more frequently, I’m able at times to be side by side with them; they control me and my body and yet I’m aware of what’s been said and done. It’s quite surreal and it’s also draining too and yet I’m consciously aware that I prefer this to losing time. Side by side is a positive when they are having cartoon time and I can communicate internally to them as we watch together. But when I’m busy and my only down time is filled with them being in control and me as a passive viewer unable to have any internal dialogue it’s not so great. I have witnessed their actions and conversations with my family, but as time passes and jobs don’t get done it’s irritating and difficult.

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Losing time has been an issue too, I have lost track of the hours that have somehow disappeared and I have no recollection of them. Today I knew I had missed my tea time medication, I was actually quite irritated about it but decided I couldn’t take them so late as my night time medication would clash. Imagine my surprise then to find an hour later that my missed medication had been taken, it’s worrying as I have no memory of taking it or the time it happened. I can deal with the impact in that I will stay up late to take my night time medication and yet it’s the fact I’ve lost time I find hardest.

This evening my little parts of me got cartoons as I realised my neglecting them is probably not helping them or me, in truth it’s most likely the cause of me losing more time and control. I haven’t meant to neglect them or my teen but it’s just a busy week with lots of deadlines and things to do. Everyone has those kind of weeks when there doesn’t feel like enough hours in the day, the to do lists seem endless and you feel pulled between competing priorities and demands.

Yet for me living life with Dissociative Identity disorder, borderline personality disorder (according to the doctors) and symptoms of depression and anxiety busy weeks are just not conducive to life. I’m slowly learning this fact and I try hard to avoid them, yet every so often I make the mistake of cramming too much in and creating a busy week.

You would think I’d learn by now that I’m just not able to do the same level of activities I once could, I can no longer have day after day of being busy. Yet somehow I make this mistake at least once every couple of months and we end up in the spiral of decline which causes more lost time, switching and extra strong feelings from my other parts of me.

Thankfully despite tomorrow being rather manic things ease a little on Friday and the weekend will offer at least one free day. I can’t wait for my first free full day I know exactly what I want to do, I want to give time to me, all of me.

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Next week is even better I only have 1 meeting in the diary and despite the weather forecast not looking too good I intend to utilise my time well. I want to throw a frisbee for the first time and I want to attempt another paddle in the sea. But most of all I want to communicate internally with all the different parts of me, especially my teen and my littles. I want to watch cartoons side by side with my littles, to plant more seeds with my teen and do some art too.

Living with mental health issues means I need to exercise self care and that is about giving time to the alters but it also means looking after me. So that will be a priority as well, it is as I have said before a bit of a juggling act balancing the needs of every part of me. One day hopefully I’ll get this juggling act right till then I guess we will have to keep on practising.
Copyright DID Dispatches 2014

I wish I didn’t have Dissociative Identity Disorder

 

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Hating my past

There are times when I just wish I didn’t have Dissociative Identity Disorder, that I was just a ‘normal’ average person who wasn’t as fragmented as I am. So there are times when I try desperately to be your average well adjusted functioning person, someone who in my own case is able to do everything and anything. Sadly of course that isn’t the case I am someone who is fragmented, who has alters; the different parts of me, and who has a past.

A past that I know I so wish I didn’t hold, a past that I wish more than anything wasn’t true, but a past that I can’t change. I wasn’t the average girl next door growing up, I was the child suffering in silence, the child who was being abused.

That’s the hardest part I believe of having this thing called Dissociative Identity Disorder is my past, the reasons why I have D.I.D. For me at least it’s the coming to terms with the reasons why I dissociated in the first place that’s the hardest thing, why I now am fragmented and why I live in this chaos of triggers, switching and losing time.

Whenever I visit my birth place I am always somehow more aware of the past, I can’t help thinking of times when I was hurt and abused as we pass by places. The fear of seeing certain people is always there as is the harsh reality that this place holds many triggers for me. The accents of people and the little things that for many wouldn’t be significant suddenly seem so very important to me.

I visit because I want to and I have friends and family still there, but I also have a mass of memories which I so wish were not mine. Those memories of a past that I would rather not own and I’d rather hadn’t happened at all. The reality is of course I can’t change my past, and I can’t change the fact I have Dissociative Identity Disorder either.

I face this difficulty in two very different geographical locations because I spent part of my childhood in two counties. I moved approximately once every year, well I know I lived in at least different 15 houses by the time I was 17. I went to so many schools that I lost count of the number of teachers I encountered, but I know it was far more than your average child.

The fact my past is full of chaotic memories, moving and removing, anger, abuse and control meant that I dissociated, I dissociated to survive I guess, I doubt that I would have survived without dissociating. So I have a lot to be thankful for, in that dissociation probably saved my life and allows me to be here today the mum of three children who is determined to put my past behind me.

Yet dissociating so much to avoid the pain and the hurt is the very reason I now live with this disorder, it’s the very reason I live in chaos at times and it’s the very reason I have my alters. Now I don’t hate or dislike my alters how can I, they are parts of me fragmented as a result of my past trauma. I just hate having to live with Dissociative Identity Disorder and in turn having to accept ownership of my past.

The truth is it’s my past I hate the most, it’s my past that I so wish I could just walk away from but I know I can’t. I was talking about my past in my therapy session and doing as all victims do I’m sure that thing of self condemnation, I was angry at myself for not stopping it, for not telling, for not somehow being different, for not making my past better. Now normally when I see therapists or doctors they do that thing of telling me it wasn’t my fault and I brow beat them with my skewed logic, the logic that for years as allowed me to take this anger and hatred of my past out on me.

My skewed logic has been that given I was told by many abusers it was my fault and there were plenty of them, they can’t all be wrong. One of me, lots of them and so they must be right it was my fault. But my psychologist asked me questions back and for the very first time he didn’t accept my skewed logic he challenged it, not just with ‘your wrong’ but in a way that got me to think. Now he’s very good at analogies, and he uses them every now and again and that’s what he did in this case. His analogy made me think and I realised that I couldn’t deny that maybe my logic was skewed.

 
So now I guess I have to start living with acceptance, acceptance my logic was skewed and therefore I have a right to apportion anger and blame in the right direction. My past wasn’t my fault and the fact I have Dissociative identity Disorder isn’t my fault either, I don’t have to like my past or the fact I have D.I.D but that doesn’t mean I can’t like me. I can and need to learn to admit to people when I’m struggling and I’m not quite your average normal person and it’s ok not to be superwoman, to not be able to do everything.

Most of all I think I am learning that it’s ok to hate my past, but that I need to accept it as mine in order to move forward. I’m learning too that my self condemnation is flawed, I couldn’t have changed any of my past. I guess I’m learning it wasn’t my fault, the abuse wasn’t my fault.

Copyright DID Dispatches 2014

 

The Isolation Legacy of Psychiatric Hospitalisation

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Ever had that feeling your distance and vague, on the edge of what’s happening or felt socially awkward? That’s how I felt yesterday which was sad, it wasn’t anyone’s fault it was just how things felt, it stems from my time in hospital when I was so outside what was happening in the world around me. When I was so detached from the rat race and generally isolated from life that I became so unaware of what was going on around me.

Now I was never a social animal, I only ever had a few people I could call friends and I much preferred to be with just one or two people than a huge crowd. But I understood life and I didn’t feel distant or vague. Yet after my time in hospital that changed and I suddenly found that it was much more difficult to interact in the same way as before.

I went out for a meal with some dear old friends and unfortunately it had been a long journey in rush hour traffic which was draining and the restaurant was extremely busy and noisy. My friends are really good, we have been meeting up for meals for over 25 years and I’ve known some of them even longer than that, this was safe secure company. They have stood by me during my time in hospital and have never judged me, in fact they have kept me up to date with things even when I wasn’t able to attend our regular meet ups.

Yet somehow yesterday the restaurant was just too noisy and I felt tired and that led at first to me feeling on edge and then distant. It wasn’t anyone’s fault, no one could have done anything different it was just one of those days I guess, but as I drove to where I was staying I felt anxious. I was frantically thinking over and over if I had done anything embarrassing, had I said too little or too much.

I was explaining to my daughter how the evening had gone and said how I felt socially inept, how the noise had caused me great difficulties and how I now felt really drained. She was as reassuring as ever, but the reality is that I just felt distance, vague and on the edge of things. It wasn’t my best night and I knew that, yes it wasn’t a failure but I knew I could have been so much better too.

Having difficulty yesterday has reminded me of the damage done by all the isolation I have faced in the past decade. Isolation caused by having Dissociative Identity Disorder, isolation caused by being in the psychiatric system, in fact it hurt to think just how much I have changed as a result of those 200 weeks in a psychiatric unit.

My admissions were rarely short, a few were, but I had one of 14 weeks, another of 10 months and my longest was nearly 2 years. Believe me it wasn’t good for keeping contact with the outside world, or keeping hold of personal life skills. The psychiatric system drained me of dignity but it also robbed me of so much more too and I know my social skills and my confidence took a huge knock.

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The longer admissions were the worst you become so disenfranchised from society, you don’t watch the news and keeping up with events impacting friends and family is hard. I can recall the TV seemed frightening when I first returned home after my longest stay, I hadn’t watched it at all during my inpatient stay. The noise seemed hard to deal with and interacting with anyone except my immediate family felt like a mountain of a challenge.

The first family gathering I attended after my release was terrifying, I felt like an outsider, an alien from outer space sitting in and observing. Going shopping was a challenge as everywhere seemed so busy and talking to people in authority was exceptionally hard such was my fear of these people now. I felt as if I was being constantly assessed by anyone and everyone and they’d come and lock me back up at any minute, I had vowed to myself that if that did happen I’d bail out. I even had my suicide plans ready and this time I knew I would not make a mistake, such was my fear of hospital that I really couldn’t face being detained any more. I knew it wasn’t fair on the little parts of me to allow them to suffer yet again in a psychiatric system that really didn’t understand, in a system that terrified them.

If there was one thing I had learned in hospital it was a plethora of new ways to self harm and those ways to commit suicide that failed and those which worked. Looking back I think that it is so sad that the things I did learn in all that time I was in psychiatric inpatient care were such negatives.

In hospital I tried desperately to keep myself to myself to avoid conflicts, I wasn’t like the other patients I was the only one who had Dissociative identity Disorder. The only person who constantly carried a bear and who switched from one alter to another, one minute I was an adult me, the next a child and the next a moody teen and all in less than a day. I guess you could say that I stood out and that really didn’t help to enamour me to other patients who often thought I was odd, weird and just plain crazy.

So during my time in hospital I became isolated, isolated from the world outside but also socially isolated inside too. You tend not to make many friends in hospital and you desperately want to have your own space and peace and quiet. You lose skills, you lose the very basics many people take for granted and in my case I lost the ability to cope in busy noisy environments with ease.

Hence why I guess yesterday was difficult, tired and drained and in a noisy place I just found things harder than usual. I know I will learn from this experience but I also know I can’t change the damage done to me in hospital in an instant. Some day I might be able to face such a busy environment with ease, sadly I doubt it will be anytime soon though.

Copyright DID Dispatches 2014

 

 

Dissociating and losing time

 

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One of the difficult things about living with Dissociative Identity Disorder is the fact that I lose time, it is irritating, confusing and frustrating. I seem to have lost quite a bit of time so far this week and that has led to certain things not getting done, which Is something I find particularly annoying.

I am fortunate that at times, my family or my support workers can explain to me afterwards what has actually happened in the time I have been away, it can be extremely unsettling and disturbing. Yet somehow it is annoying to find minutes or in the worst cases hours have gone by and I have no recollection of them at all. It certainly makes planning things difficult and I know that I can’t always complete everything I had intended in a day because of the fact I am losing time.

At the lesser end of losing time I can find myself missing odd parts of conversations, a sentence which is somehow crucial to the conversation and can leave me feeling perplexed. It’s not uncommon for me to stand looking blankly at a person thinking desperately what were we discussing, frantically searching my mind for the last point of conversation that I remember. I often have no idea how much time as gone by at this point and yet the other person may have no idea how confused or disorientated I feel.

I am slowly learning to rescue myself from such situations, but I am told I often make statements or comments that are a little out of place to the conversation thread. I try and laugh these small incidents off but inside I am usually feeling anxious as I always worry people won’t understand or that another part of me has said or done something I would find embarrassing.

Currently the worst extreme of losing time I am experiencing is that of losing hours; not the days I have lost before, it is so difficult to find that in what feels like a few seconds time has moved forwards. Knowing that I have no recollection of what this body of mine has being doing or saying in that lost time is frightening. It can feel extremely scary and I usually frantically try to establish what exactly has happened in those lost hours.

The other day I was sat watching tv at home, in a sort of co-presence state between the little parts of me and me; Carol. The next moment a couple of hours had gone by and though the TV was still on the programmes had moved forward as had the clock, I also had rather grubby hands and there was sticky sweet wrappers by my side too. Feeling disorientated I asked my son who was at home if he knew what had happened in the time I had lost, fortunately I guess on this occasion he could fill in the blanks. Apparently one of my alters; another part of me, had asked for his help to complete a task and they’d even had a conversation with him. Slowly I was able to build up a picture of that time, I had planted some seeds in the garden and chatted on the phone to my daughter too.

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I found myself feeling unsure whether to be pleased for the alter or annoyed, I mean they had taken control of my body. But I began to realise why maybe this had happened and it was as much my fault, I had allowed this alter to choose seeds at the garden centre last week to plant and then actually planted some of them myself. No wonder they took control and seized an opportunity to have their turn at doing the activity I had promised them.

It was reassuring that I hadn’t done anything unsafe or embarrassing, I was glad they had planted the seeds and had handled equipment safely. I’m not sure digging the holes for the seeds with a stone was a good idea, but it worked. They hadn’t hurt us and they had apparently had fun too, they had got anxious afterwards as they were unsure if I would be cross. Hence why they had called my daughter, who thankfully explained everything to me about their concerns. In the end I spent time reassuring them and letting them know that I wasn’t cross and that I was quite pleased they’d had fun. I made it clear it would have helped if we could have done it together, but that I accepted some of that was my fault too.

Life with different alters isn’t easy and I still find myself learning about this condition and living with it on a daily basis. I still make mistakes and that probably causes some of the lost time instances if I’m honest with myself. This week has been rather stressful and so maybe that’s why I am losing time more, it kind of makes sense to me.

When I was first diagnosed and realised that this losing time was for a reason and wasn’t because I was mad; which is what I initially thought right back in the beginning, I felt some kind of relief. But I did also get angry at the alters for robbing me of time, which is how it felt.

Now I take a different approach, I now realise that the alters are different parts of me and so even if I lose the time, another part of me knows exactly what has happened. It is still difficult and it’s not so easy to accept that I am made up of fragmented parts which co-exist often in isolation, separated by a brick wall of amnesia. However it could be so much worse, I now lose no more than a few hours and I’m usually in the safety of my own home at these times surrounded by people who understand.

There was a time when I lived on my own and lost days, I’d find myself in strange places with no idea how or why I was there. I often found myself standing next to a train line, teetering on the edge of a station platform or next to a canal. People failed to understand my distress or my upset and confusion at these times, I couldn’t explain what had happened it was impossible to find the words. In hospital I have found myself covered in self inflicted injuries and yet with no idea why or how they had happened. Staff would say I was attention seeking and fail to understand that I had lost time, to me it felt like someone else had done this and yet no one seemed to comprehend.

For now at least I don’t face this level of dissociating, yes losing time is still a part of my life and yes it impacts every day and it is frustrating and upsetting. But I do know that things could be much worse I could still be losing days and the fact I’m not is something for which I am extremely grateful.

Copyright DID Dispatches 2014

Why are compliments so hard to accept?

 

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Yesterday at my Care plan meeting I hadn’t expected there to be any positive compliments, I didn’t feel as if I had warranted them so I was surprised.
I sat and felt embarrassed and uncomfortable as the discussion unfolded so desperately wanting the conversation to move forwards, but the professionals seemed intent on giving me this recognition. I was surprised at how it all made me feel and I found it rather strange that my reaction was one of being embarrassed.

Afterwards I asked my psychologist why I felt so uncomfortable and it led to a discussion and me thinking more in depth about why this all felt so odd and surreal. The reality is that positive compliments are something that I’m not so used too, they didn’t make up my life as a child unless they came with a cost. I was most often put down and made to feel small and I grew up thinking I was a pain. I was only ever a good girl if I had to do things I hated and that hurt me and were in reality abusive to me. So I thought I was someone who was worthless, who deserved to be belittled and sadly the professionals I have encountered over the years have in most cases often carried that on too.

I am sure that the professionals didn’t meant to make me feel a troublemaker, or a nuisance but their comments often led to me feeling this way. The times when I was told by nursing staff that I was only self harming for attention or when people would raise the issues of care costs in meetings. Making me feel like a commodity and a cost burden, in truth at most CPA’s over recent years this has happened and I have often felt misunderstood and judged by the very people tasked with helping me.

The reality is of course my reactions both yesterday and in previous moments stem from my past, they stem from when I wasn’t allowed to feel any worth. That is something that I cannot change, my past is my past and yet I can change how I react today, it’s just going to take me sometime.

Compliments are not easy for many people to hear and so I realise I am not alone in feeling uncomfortable, but that doesn’t mean I didn’t warrant them. In truth I am moving forwards and I have taken huge strides forward in recent months and that needed to be recognised. Yesterday the professionals wanted to help me to understand how much I am progressing and how much they recognise that.

I know they have at times been critical and misunderstood me, yet here they were trying to tell me I’m doing good and I just wanted to rush on with the agenda. Goodness I must confuse them at times, it must feel as if they can’t do right for doing wrong.

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The reasons for their praise was twofold, one my decision to give back some of my support hours a decision we have thought long and hard about in recent weeks. Since one of our support workers left we have had to manage with less support whilst new staff are found and start working. This change has led to me seeing that with new skills we have learnt in therapy we can manage with less care. This needed to be a decision I made, rather than one imposed upon us and so given recent circumstances I felt able to offer this reduction.

I am still going to have a significant level of care and I will still have 3 part time support workers who together will help us cope with every day life. They will help me to learn the life skills I need and to gain more independence over time. I was very clear that I am not promising reductions every CPA, indeed it will be only when I feel able and ready.

The support workers contracts are safe too because I have set minimum hours on their contracts to allow me to make further reductions later on without impacting them. There will currently therefore be additional hours they can work over their contracts which will help me in the here and now. Yet this will also allow me the freedom to reduce my care further if I feel able in the future without the guilt of worrying about staff.

So with all this security in mind I felt I could offer the saving in my care costs, I don’t have any idea if or when there will be any future reduction. I’m not setting any parameters or targets these are not needed, what is important is me making decisions that I am comfortable with and that work.
The second reason was the fact that I have made steps forward in respect of my therapy, yes there is still much more to be done. But progress however small is important, its a sign that things are working and a sign that I am clearly committed to this process. I know it’s hard work and at times painful but I so want to improve, but it needs to be at a pace I am able to cope with.

There is more understanding from the professionals, they seem to comprehend me better which I really appreciate it. Yes I found the compliments hard to take, I’m not used to them and I am for the time being going to worry that there is a cost for such compliments, as there was in my past. But I know I need to learn to accept this praise and accept I warranted it and most importantly that it is safe. It’s going to take me time to feel comfortable when I receive praise but one day I will, then I will have left that part of my past behind.
Copyright DID Dispatches 2014

 

The Importance of my Upcoming Care Plan Meeting

 

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This weekend I will be trying hard to distract myself, as I know my mind will start to worry about my impending Care Plan Meeting (CPA) scheduled for Monday afternoon. It’s so easy to try and tell myself that things will be alright, that I don’t need to worry. Yet despite a very small official agenda for this meeting, I have so much I need to share with the professionals involved in my care, it has been a rather busy and at times tumultuous past 3 months. The official agenda maybe small, but mine isn’t it’s full of important issues that need discussing, I need to be heard by the professionals and I hope they are able and willing to listen.

Throughout the time since my last CPA my regular care coordinator as been absent, I have only seen the temporary person twice so they feel a bit like a stranger. I have had to call the crisis team, something I had vowed to myself at least never to do and I have become a somewhat regular caller to the Samaritans. It as felt at times like I’m losing this battle to get well, but I know I’m just learning to feel and to grieve.

There have been changes in my home life too, I’ve had one personal assistant leave and a new person will start the day after my the CPA. We are still looking for another part time person and that isn’t easy either, though currently we are at least getting applications in. Things within my family are changing and that’s meant that we are having to face new challenges and new concerns all at the same time. I know things don’t stand still, the world would be very boring if they did yet somehow for me change is always hard to deal with. Parts of me need stability more than anything and right now it feels I haven’t quite got the level of stability we need.

There have been issues with my medication reduction and that has been difficult to face as well, I hate to fail and yet I have felt like a failure over my medication. In the past 3 years I have tried desperately to keep reducing the amount of medication I am taking, but in recent weeks we have hit what feels like a road block. I have managed to stop my anti psychotics, but my reliance on benzodiazepines has been a much harder journey.

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I’m now accepting that I need to rebalance myself before I continue to try and reduce the levels I am taking any lower. The fact I’m stuck is hard to bare because I feel I have failed, I want so much to be rid of this drug that has been a part of me for so long. This will be the first meeting in 3 years where I have to acknowledge I can’t reduce the levels of my medication. It’s been my biggest success and I’m not sure how I will feel, when I hear myself saying to my psychiatrist that I’m unable to keep this reduction going. I know it’s something I have agreed with the temporary person, but facing my psychiatrist with this seems somehow harder.

I have also realised in recent months how vulnerable I am at times, it’s not something I like to admit but I know it is true. I like to think I can manage well and I’m as able as I ever was, but sadly that’s not the case. There are times when I am easily manipulated and misled and this causes me many issues.

Certainly in recent months I have realised how much people can take advantage of me when I am not in control of this body, I switch alters and a little part of me comes out and I am as vulnerable as a child in those moments. Easily led and easily pliable and so often unaware of the consequences of my decisions or actions at that time. Alongside this are the inbuilt default positions that result from my childhood which lead me to be very susceptible to abuse of one kind or another. This doesn’t necessarily mean physical or sexual abuse, but emotional and other types too.

I am now aware just how vulnerable I am and if I am honest it’s scary, scary because I can see how much I am risk. I don’t want wrapping up in cotton wool, or treated with kid gloves, I want to make my own decisions as much as I can. Yet in recent months I have had to put in place new safety precautions to protect me and those need to be made clear to the professionals at my meeting.

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I also know there will be a report from my psychologist and I will be asked about my psychology sessions as well. I’m quite nervous about the report, why I’m not sure I know I am doing well and things have been good in the sessions. Maybe it’s fear of the unknown that is causing me to worry, or fear of what might be said but mostly I think it’s the fear of being judged.

I know I want to share the good things that have happened, like internal dialogue and how we have some communication with my teen. I want to tell them about how we went paddling, how we managed to poach an egg and not burn toast, things I never thought possible. I want to explain how my days are different now, they are full of internal dialogue with the different parts of me, yes one sided mainly but it is a change. I have to plan things differently to try and help the other parts of me and that is hard to manage at times.

I want to express how I have learnt to understand a little how I think and feel and why, that I possess inbuilt default positions formed decades ago. I never realised they existed until the last few months and now I know my psychologist and I will need to work through these in order to help me find new ways of thinking. I want the other professionals to realise just how much work I am doing and how complicated this all is. I really am unsure if they appreciate the impact of trauma or my childhood upon the way I am today, it is In my opinion time that they did.

There are still unresolved issues over the legality of which Clinical Commissioning Group (CCG) pays for my care. I think I know the answer it’s just the CCG who currently fund things hasn’t quite got the full legal information yet and so no decision has been made. I’m not going to rock that boat, not at this CPA at least I have decided that I will wait for them to decide they shouldn’t be paying.

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In the meantime I want to give something back, so often in these meetings over the last 5 years I have been made to feel like a funders nightmare. Put under pressure to give a saving and at times made to feel like a burden upon the state and unworthy of the support I currently get. I have lost count of the times I have been told it would be cheaper to put me into a unit or residential home, I know that’s not true of course it would be more expensive. On Monday I want to give them news of a saving and I so want to see the faces of certain professionals as I tell them.

I don’t expect much sleep on Sunday night as I anticipate lying awake worrying they won’t let me be heard, or they will judged. Worse still I fear they will spring a new agenda item upon us causing disruption and fear within me. I guess its going to be a busy few days as I try to distract myself from worrying whilst at the same time manically working at keeping all my alters; the different parts of me, settled and content. Wish me luck….

 

Copyright DID Dispatches 2014