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

 

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