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.
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.
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.
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