Pillow fort days -life with Dissociative Identity Disorder

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I write this sat in the sunshine at an historic Welsh Castle which is quite a nice change for me, I know parts of me finds sitting in the sun difficult though I’m not fully sure why. I think that I find it difficult if I’m honest, I have never felt comfortable being in the sun, maybe because as a child we didn’t get the chance to do ‘normal’ activities like this very often and so it feels very alien and odd. Just being is a strange concept really, I haven’t enjoyed activities most people would take for granted, I used to find taking the children on picnics difficult, I couldn’t engage like other parents. My children did things like that mostly with other family members and not me, I wasn’t able to engage, to be a part of those carefree things families are meant to do yet here I am forcing myself to sit in the sunshine, let me explain why.

It’s been an interesting few days as I try and motivate myself into keeping going and not retreat to the security of my pillow fort on my bed. Truth be known we encounter periods like this without warning and they always catch me off guard this weeks has been really hard though. My mood and my motivation fluctuate depending upon which part of me is most evident and this can be frustrating and also draining.

Earlier this week I had a part of me that seemed present only first thing in the day, I would wake early, feeling really happy and over enthusiastic. My keenness to do things was odd I was whizzing around as if in a whirlwind, I wanted to do things that I normally wouldn’t want to. I felt like I was in superwoman mode a bit and I felt great, I wanted this euphoric feeling to last forever, I wanted to keep all this energy. Each day this euphoria lasted until mid to late morning and then suddenly depart from me, I’d feel myself plummeting into the depths of darkness and I realised I most probably had switched alters.

Suddenly what seemed easy was a chore, I just wanted to hide to hibernate from the world and I couldn’t explain this to anyone. The highs were high but the lows felt even more dark than normal and yes it’s so hard to deal with this. My family were supportive as ever, but I was just getting frustrated, annoyed with me, all of me for this sudden drop in mood. The end result of all these mood changes has been days of two distinct half’s, the mornings hyper whilst the afternoons were desperately sad and lacking in motivation.

These two particular shifts in mood are stark in contrast yet my reality is a constant shift in moods as I switch from one part of me to another, often they are so subtle that I hardly recognise them. I guess I do but they don’t stop me getting on with my days and they don’t upset me as much as the past few days.

Sadly the huge highs and lows are too extreme to not go unnoticed and the impact they have is much more evident. Currently I have limited support as we are down one support worker and my family who are trying to cover have been busy and unable to be around as much as they normally would. We totally understand why and none of the difficulties of the past few days are their fault. We wanted to try and prove we can manage, but the honest reality is this week some days we aren’t managing, we are barely surviving.

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Yesterday we struggled to get up we couldn’t face the day, after about an hour we realised we were losing the battle our mood felt awful, instead of being able to keep going we hibernated. We retreated to the safety of our pillow fort by mid morning and stayed there till mid afternoon, my son was trying to help us he kept nagging away at us to have a drink, to eat, to try again. In the end I persuaded myself to get up only to attend a pre-arranged appointment, it was the hardest thing to do and I felt terrible.

I know if it had been my choice we would have stayed in bed, safely secure away from everyone and from my feelings. But when someone is coming to your house to collect you and you know that you can’t hide then you kind of know that you have no choice. To be honest by the evening I was glad I had gone but it still felt hard to get enthusiastic or engage with things.

This morning after a few hours sleep I woke up and initially I did the pillow fort hibernation again, then I realised that I am being unfair on the parts of me who don’t feel so down. The parts who desperately want to engage with life and keep going, those parts who are eager to explore life and feel safe too. Some parts of me hate my bedroom, they hate the concept of bed and yet here I was forcing us to stay in the place they fear.

Hence in order to avoid the chance of me retreating to bed having prised myself out of the sanctuary of my pillow fort we have come out with my son. It’s my only chance of staying out of bed, I know if I had stayed at home I would by now by back there safely hiding in my pillow fort.

Instead I’m forcing, yes forcing myself to sit in the sun, it feels uncomfortable it doesn’t feel great, but I have to keep telling myself that parts of me will be glad. I’m sitting in a quiet spot in the sun and trying to avoid all the other people we see, I don’t want to be sociable, I don’t want to engage with the world that’s around me. But I am trying to make an effort for the other parts of me, it’s my attempt at giving them a chance to not suffer because of how I feel.

I still don’t know who this depressive low mood belongs too, is it me or an alter, I guess it doesn’t really matter because the mood impacts all the parts of me. That’s the thing with Dissociative Identity Disorder whatever my alters do, whatever those different parts of me think or feel it impacts everyone. There is after all only one body, with a multitudes of fragmented parts fighting for space to be, fighting to exist side by side in a world that for many of them feels alien and frightening.

Copyright DID Dispatches 2014

 

Making my journey with D.I.D bear-able

Making my journey with D.I.D bear-able

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My Little parts are keen for us to introduce our special friend

Ever since my melt down point a decade ago I have had the company of a cuddly creature to keep me feeling safe. Initially this was a rather large creature who filled my arms and to be fair wasn’t so easy to carry. After 2 years my children and I chose a new creature whose size made it easier for me to carry and to discretely transport around.

Now my cuddly creatures are not live animals, no there are teddy bears called Cuddles and Ted, between the they have been with me throughout my journey through the mental health system. Now cuddles was rather cumbersome due to her size, it made it difficult to carry her around and so she is now retired to safe storage but Ted she has been with me for 8 years now and is a daily part of my life.

I’m not afraid to admit I have her, in fact until a couple of years ago I couldn’t leave her at any point in the day. Ted was carried in my arms daily, at home and when we went out she has been a source of comfort and in many ways has given my little alters a sense of grounding and security which has been significantly helpful.

Ted has been with me in all bar two of my acute hospitalisations, she’s been locked in a forensic secure unit and a non-forensic one too, she’s endured being detained by the police when we were repatriated to hospital in the cage of a police van. She’s been with me when I have tried to end my suffering and when I have self harmed, in fact Ted has been through every step of the journey since 2006. She has spent some 130 plus weeks in hospital, her predecessor cuddles spent approximately 65 weeks in hospital.

I guess when I carried her everywhere I stood out, she and I were a partnership and yes she was my security blanket if you like and some patients and certainly some staff found it difficult to deal with this women and her bear. I was unable to cope with life, with the memories and the flashbacks which filled me with dread and fear, with the confusion and anxiety I felt I just wanted the ground to swallow me whole to stop my anguish and my pain.

I can recall being verbally attacked by a stranger who took offence to me and my bear, he said ‘people like you should be locked away’ and I guess that was easy for him to say but I wasn’t always this wreck. I am a mum and I was once a wife, I worked hard and contributed to society I never expected to find myself in a mental hospital nor carrying a bear and yet it happened. I knew I had a tough start in life but I hoped I’d managed to leave it all behind, I thought I had, but then the reality was that it was just hidden away. You see in truth much pain and anguish from my past was hidden deep inside of me waiting to reveal itself when I was least expecting it. I didn’t need a random stranger attacking me for carrying a bear I felt bad enough about myself who I was and the fact I couldn’t cope.

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Ted has been a comfort that I needed through the darkest of days she has been there and I am not ashamed that I needed her. She has kept me grounded at times especially when I have suffered flashbacks and memories. I could keep telling myself & all my alters, all the parts of me that when bad happened we didn’t have Ted and yet now we did and that meant we were safe.

As a child I only recall one teddy bear he came from a bad person as a reward for being ‘a good girl’ for not telling when the person hurt me and yet I loved that bear. I remember coming home from school and my bear being gone, my mother had decided I had to be punished for something and taking that bear away was my punishment. I didn’t have another bear, unlike most children for me toys were rare and they came and they went as a form of control.

When my children bought me Cuddles I was elated and so grateful and yes she served me well when I first hit melt down, but her size made her harder to carry. But like Ted she took so many of my tears as I could hold her and let out the pain that ripped deep into me at that time, I find emotions so hard that it’s impossible for me to explain them to others easily, to express them and yet I needed to.

My cuddly friends have been a part of each day now for a decade and I doubt I could have managed without them, it felt like they were attached to me, it probably looked like that to the world. We were this person who went everywhere with her bear and people became used to that, some became so accustomed to her they no longer saw her.

About two years ago I made the decision to put Ted inside my bag when I went out, she was still with me 24/7 but she was no longer a visual constant in my day to day life. I remember the first time I placed her in my bag I felt bereft, but I knew it was the right time to stop carrying her in my arms all the time. Part of my decision was based upon the fact that my constantly carrying this bear had caused me significant muscular issues which required physiotherapy treatment. For years I had held her in my arm so had held my arm in a bent position this had caused muscle weakness and tension and when I realised that all this pain and discomfort was a result of my needing Ted I knew I had to take action.

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For a further year Ted was still a constant, she was carried around everywhere I went, the doctors, the shops, even for a McDonalds. Then one day I forgot her she was left sat at home on my bed and I ventured off to an appointment, by the time I realised we didn’t have time to return to get her. I had to face the fact that we would have to survive without her for these few hours and of course we did, we managed and it led to more and more organised opportunities where Ted stayed home. I had some control over this so if I was struggling or facing a difficult time Ted came along, but if I felt we could manage well then she stayed home.

Now Ted lives on my bed and there are times she comes with us, so every time we attend psychology she comes along too. When I face Care plan meetings Ted comes too, holidays and other times away from home involving overnight stays she is part of my luggage. But I can now manage without her when I am shopping, or attending the GP’s, visiting friends or going for a coffee. Ted probably spends 50% of her time on my bed and 50% of her time in my bag or on the sofa, it’s a far cry from my carrying her 24/7.

This week I’m attending an event which means I’m away from home, so Ted comes too she will stay part of her time on my hotel bed but I know she’ll be with me when I need her. There will be times when I do need her, times when I feel vulnerable or I am switching more and I need to try and ground myself.

Now it maybe hard for people to understand why I a grown women need a bear but of course parts of me are little and need the comfort a bear gives. She also allows me to know that the past is over and that is so important to me. I am fortunate that my family accept her as a necessary part of my life currently, they don’t nor have they ever judged us. In fact my children who are adults themselves will often say hello to her and they occasionally buy a new outfit for her. It’s as if they understand the role she has and continues to play in our life.

I never expected this small bear Ted would become so important to me and obviously carrying her everywhere day in and day out she has weathered quite a lot, but I can’t imagine replacing her she will just age and become more loved as time progresses. She may not come out with me as often and one day she may just live on my bed, but for now Ted will keep playing whatever role I and all my parts need her too. Be that grounder, comforter or as a sign of reassurance Ted is a significant part of my healing journey and I’m glad she is part of our life.

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Copyright: DID Dispatches 2014