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

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Mine and Teds Hospital Adventure

 

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Monday 1.30pm:

I am writing this blog sat in my hospital bed post surgery, the surgery on my foot took place 3 hours ago. So far I have been very pleased at both how we are being treated and also how the different parts of me are coping with this experience. Having surgery for anyone is difficult, but for someone with Dissociative Identity Disorder it has added complications.

Prior to coming into hospital I had to do a lot of internal dialogue as I tried to explain to all of me the procedure we were to undergo. I had no idea if the alters would grasp what was happening, but I did know that I needed them to stay calm during the procedure.

There was the fear that we would be triggered or switch in the middle of the operating room, fears that me, Carol, would freak out too, I’m not very comfortable in hospitals. There was the added fear of how the medical staff would treat us, especially given my file had a huge M marked on indicating we had a mental health issue,

If anything so far the staff have been extraordinarily helpful, they have regularly checked on us and ensured we are comfortable, they have been friendly, polite and very attentive to our needs. In fact every member of staff who has seen Ted have asked her name and have said hello to her, that has helped us more than they; the staff, realise. My surgeon and consultant who knows we have Dissociative Identity Disorder made certain we were ready for surgery, checking I was settled and adult when he started the operation. I was grateful that despite not fully getting D.I.D he comprehends I can become a child alter, and he granted us permission to take our teddy bear into theatre along with our own music to help us stay grounded. He also put us first on the theatre list hence we didn’t have to wait around anxiously for hours whilst others were whisked to theatre ahead of us, these little actions have made such a difference to today.

Throughout the surgery he explained what was happening and checked we were ok, he ensured we knew when things would hurt or be cold. At the end he was certain to tell us what would happen in post op and he did hand over that I had D.I.D though I doubt the nursing staff knew what it was.

Throughout the entire procedure I was focused on telling my alters we were safe and that it was going to be ok, I have never worked so hard on internal communication as I have today and I do feel exhausted by it all, I am certain we will sleep well tonight.

Truth be known the worst bit was when the saline solution ran down my leg, as a heighten sense of anxiety rose inside I had to fight the desire to both panic and dissociate. The consultant must have sensed we were struggling as he kept explaining it was just saline and it was ok, his words were enough to help us stay in the present and not kick out with our good foot. I was concerned they’d have to restrict our legs but thankfully it wasn’t as bad as I had feared, and if was able to lay still on the operating table whilst I was tightly hugging Ted.

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The pin in my foot protrudes about 1cm from my foot, and we are not able to weight bear on that part of the foot. Now whilst I understand this I’m not certain all of my alters will get this. I don’t wish to tempt fate but I will be surprised if we don’t have to return to the hospital early to repair damage to the pin. I’m unsure how I would explain that though, as it’s not so easy for healthcare professionals to comprehend D.I.D at the best of times.

Away from the theatre, the ward staff have been great too, my daughter who drove me here this morning has been allowed to stay, it’s been reassuring to have a familiar face close by. The nurses I know have little if any understanding of Dissociative Identity Disorder but they are aware we have a mental health issue and are sensitive to that fact. They have plied me with plenty of tea and a meal that was actually quite tasty, they are not judging me in the way I had originally feared at my pre-op.

It’s not going to be an easy few weeks, with limited mobility I need to remind the little parts of me that we can’t move around as freely. Internal communication will continue to be vital over the coming weeks as I keep all of me informed and up to date with what is happening to this body we all share.

I’m not sure how we will cope when our stitches are removed in a few weeks, it’s just yet another hurdle we will have to face together. I truly believe it’s vital all of me are aware of what is happening to us and how we need to help our body heal, I have a key role in this though as I need to keep us all informed.

Now we lay in bed on a ward waiting to see if we can go home today and if we can weight bear at all on my heel,  we know that we will have crutches but I am unsure if all of me will remember how to use them and move safely.

There is still internal talking going on and Teddy is close by being hugged like never before. Once we can go home the alters know that home a strawberry soya milkshake awaits us alongside a treat once we are fully healed. Perhaps that is bribery, it’s not meant to be,  more that I’m accepting and realising my younger alters need me to accept they require nurturing by me especially at this time.

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Having surgery at the best of times isn’t easy for anyone, but for those of us who are multiples, who have D.I.D it’s more of a challenge, a challenge which does benefit from understanding healthcare professionals and internal dialogue and reassurance which relies upon me being proactive at this time.

If you know me personally you might need to bear with me especially if I keep falling silent or seem extra distracted, it’s most probably me trying to communicate internally with my alters, the other parts of me.
Copyright DID Dispatches 2014

What it’s like to live with D.I.D -a personal account

 

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This past week I am slowly learning that having Dissociative Identity Disorder means my life is very different from most people. I thought it might be helpful to explain how being a multiple impacts upon every day in ways you wouldn’t imagine.

I start each day with the task of trying to internally communicate with my other parts, they don’t speak back so it’s  a very one-sided conversation. I run through the plans for our day, the tasks we must do and those it would be good if we do, I then invite the alters to present themselves through feelings as we go through the day. It’s my way of letting them know I will try to be receptive to them throughout the day, take their feelings and views into account and allocate time for different groups of alters.

As my day progresses I am helped by one of two PA’s, these people are invaluable to my daily life and I would be lost without their help and support. It means my family are able to be just that my family and not my carers, the children don’t need to be looking after me their mum all the time.  I am, I am told hard work and thus it wouldn’t be good for any of us if we had that additional pressure upon our relationships all of the time.

I have to plan each day to include activities for various groups of alters, so cartoons for the younger parts of me. Art for the parts that are creative or just need to express their feelings through words and pictures alongside a range of other activities which suit different parts of me.

If I don’t give time to the alters then life is more chaotic and that is what I am trying to avoid.  So each day despite switching lots and losing chunks of time, forgetting important things and feeling tired and exhausted from poor sleep or protecting parts trying to shut me down, I have to allocate time to things others would not need too.

Throughout the day my feelings my fluctuate from one extreme to another and with no warning, so one minute I might feel happy and the next be in the pit of despair. I can like today suddenly find myself unable to stop crying and yet having absolutely no idea why I feel so bad. This is draining in itself as well as time-consuming and confusing. I cannot be certain but I am assuming that the feelings I encounter are changes in alters, and the feelings  I feel are the ones they carry for me.

I have to undertake periods of further internal dialogue throughout the day, it doesn’t matter where I am if I feel an alter I need to acknowledge them in this way. It’s not uncommon for me to suddenly go very quiet as I talk internally in the hope that the alters hear me.

Now once a week I attend an appointment with my psychologist for my therapy session, but therapy doesn’t stop in that one hour a week it’s something I have to continue to work through over the week. The concept that a therapist can heal me is long gone as I realise now that this is a partnership and they can help me but I have a lot of work to do, and most of this I have to do in the times I am not in the therapy session. For example internal dialogue is something that has stemmed from therapy but it can’t just happen once a week it has to happen more than a few times each day.

I have to be honest and say that I lack skills in some areas of my life that I wish I didn’t and this exacerbates my difficulties and means I need more support and help. I find understanding others emotions hard and  it’s tough for me to build up relationships or trust. Many of the issues I have stem from my past and the lack of nurture and care I had as a child, I am learning that how I think, feel and perceive the world is slightly skewed at times.

Overall my days are busy, chaotic and no two are ever the same, I seem to struggle with balancing the needs of many with each and every moment. I am after all living a fragmented life, all the different parts of me separated by this amnesic barrier which was built a long time ago.  I know many people with D.I.D have managed to move further forward than I have as yet, working, running a home etc,  but I also know no two multiples are the same.

In my case I hope to move further forwards in time, therapy is a long process and it’s going to take a long time to heal the damage done over decades of abuse. I also know I have a tough road ahead in that I have to also not only learn about the other parts of me, I also have to retrain my brain to think in a wholly different way.  Most of all I guess I have to learn the skills I have never learnt, developmental stages which were broken and  in some not developed during my chaotic and traumatising childhood.

There is hope though, I am making progress and I can see that in many ways, 6 years ago I was in hospital a long-term patient. 2 Years ago I had an intensive 24 hour care package involving numerous staff, at home. Today it’s not as intensive, just 2 PA’s, with my family providing my support at night.

In the past before my health deteriorated I worked,  it wasn’t easy but I did it and I have manged to study with lots of help and encouragement since then? I have  to hope that  I will keep moving forwards, one step at a time. right now though I have to focus on treatment and that means medication to help  with symptoms, therapy and all the daily homework I guess that comes from it .

I’d like to run to the finish line but this race I have learnt isn’t about finishing in the fastest time, it’s all about learning to accept who we are, learning to live with the issues of dissociation, being a multiple and coming to terms with the horrors of our past.

 

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Copyright DID Dispatches 2014

The missing piece of chocolate – life with Dissociative Identity Disorder

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This past week I encountered a situation that for me at least is quite common but the frustration of which can vary depending upon the circumstances. Losing time is a daily occurrence for me, but earlier this week I found myself so frustrated and upset by one incident, that I know I have upset my alters and probably undone some of my recent progress regarding feeling my alters.

I am currently planning a holiday and like most females I guess am keen to look my best on the vacation, so since Christmas I have been eating healthier, and that has meant trying to give up my urge for sweet things. Truth be known I can be a bit of a chocoholic at times, I think this maybe down to lots of younger parts who find sweetie’s so attractive and tasty or just the fact I can’t resist the stuff.

Trying to be good and watching what I eat has meant lots of sacrifices from all of me, the alters have had to sacrifice too and I guess that has been difficult at times. So when this week my daughter offered me some chocolate I’d like to say I thought about it sensibly, but in reality I thought oh stick this healthy living , chocolate yummy. Then I tried to be good by saying  ‘just one piece’  all the while knowing that I was in truth breaking the past 4 weeks of being good. I think my mouth was salivating already at this point and I was waiting to savour every minuscule molecule of the chocolate, I could smell it, taste it, it was just there one second from my grasp.

My daughter was sitting on the sofa across from me and seemed to have finished the said chocolate bar, so in indignation I asked, well more demanded to know where my piece of chocolate had gone! it was after all mine, she had promised it to me. Her reply startled me, in fact if I hadn’t been sitting down I would most probably have fallen down in shock. “you have had it” she responded, “NO I haven’t” I replied. My daughter who by now looked quite put out stated in a rather firmer manner “Mum, you ate it ages ago!”  “You had a big smile whilst you ate it and seemed to enjoy it”.

Thus followed a rather long, protracted discussion about the said chocolate, all the while I think my daughter and I were both realising what had happened. At that very moment I was about to take the chocolate, I had switched and one of my parts had eaten the said delicious chocolate and not me. You may not comprehend my indignation, but I can assure you this was serious, I felt robbed, cheated out of my yummy galaxy chocolate piece and by one of my own alters. I was frustrated at my daughter for giving my chocolate to another part of me, she should have known it wasn’t me especially as she then told me, I had made big facial gestures and a few noises of delight too. But mostly I was irritated at both losing time, switching alters and missing out on MY chocolate! Yes I was annoyed with the alter or alters who ate it, and well that it isn’t a good position to be in because of course they realised I was annoyed and I then encountered a whole cacophony of feelings and emotions all at once.

The chocolate was just one step too far, I hadn’t been greedy and I hadn’t asked for much but all I wanted was one measly piece of chocolate and someone else ate it instead. Now any mild mannered person would get annoyed at that, and I think my reaction was at least a little justified.

But for someone with Dissociative Identity Disorder who has many different parts of me I need to appreciate that my feelings, emotions or comments about my alters may well be heard or felt by them and with that comes consequences. So for all my distress over this incident and the feelings and comments that ensued there was the potential for a fall out from the alters. Sadly in my distress over this loss of time, I didn’t stop and rationalise this situation, or think of the repercussions it just all kind of ran away with me. I accused an alter of stealing, I said some rather unpleasant comments too and I didn’t feel great about my D.I.D either and I made that very clear, unfortunately that as meant these past few days I haven’t felt any of my alters not one.

I am still switching, I am losing time, probably more than usual as I am not feeling anything and all the while I am fairly resigned to the fact I have caused this shut down. Its as if no amount of internal dialogue with my alters is making any impact upon their silence, I have apologised over and over again but sadly to no avail. I feel annoyed at myself for causing this impasse and I am frustrated that for one stupid piece of chocolate I have hindered the progress we have been making, learning to feel my alters.

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How do I rectify this, well honestly I don’t know, I am watching more cartoons than ever, I am eating treats specifically for the little parts of me who I am surmising ate the chocolate in the first place.  I keep saying sorry over and over, and trying to explain my reactions, now of all of this is done through internal dialogue which is still an odd concept for me anyway. But still there has been no feelings, and the longer the silence the more I realise how much damage my words, my anger has done.

If I could turn back time I don’t know if I would have reacted differently but I hope that I would, I now realise that I need to be more careful about how I dismiss or disrespect the other parts of me, they have feelings too and I clearly have hurt theirs.

I have therapy at the beginning of the week and how do I rectify this, will be one of my main questions as I am at a loss and I need some guidance on how to undo the damage that I have caused. I can only hope that with help we can repair the damage we have done at the same time as find a way that we can express our frustrations at the various things that happen as a result of being a multiple.

If anyone has any answers to these questions please let me know, I need all the help I can get right now.

An Introduction to Dissociation and Dissociative Identity Disorder

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There are many things that one encounters as a result of Dissociation and D.I.D, the signs and symptoms I guess that are a part of our everyday life. I thought it might be good to share just a few of these with you and to re-post a video I uploaded a few weeks ago that might also explain things.

I hope you find all this information helpful and it enables people to understand more about the rather complex issue of dissociation and  the most extreme form of dissociation namely D.ID.

Body Symptoms

Pain, insomnia, fatigue, headaches and the occasional though now rare dissociative seizures that basically means one of my alters is shutting us down.

Emotional symptoms

Sudden changes of mood, feeling detached from my feelings, depression, compulsions and rituals things like checking and rechecking that doors are locked and no one is hiding under the bed.

Social and attachment issues

Shame and self loathing, terror of abandonment, difficulty understanding or correctly interpreting  other peoples emotions and  low self worth.

Verbal, non-verbal and visual signs

Changes in posture, handwriting, eye contact and vocabulary , this can mean using words that are totally out of character for someone of my age, we also use pluralistic terminology so ‘we’ instead of ‘I’ for example. Switching between the different alters and having no recall of doing so.

Clues from our personal history

History of abuse and childhood trauma at the hands of one of my care givers, an inability to make decisions, and a poor work/life balance, gaps in our memory of our past that cannot be explained by normal forgetfulness.

Other signs of dissociation

Child like behaviours, gaps in our current day memory, loss of time, confusion over our identity – not knowing who we are,  extreme Post traumatic stress disorder symptoms including flashbacks.

Obviously this is just a few of the things that impact our daily life, it would be impossible to write a full list in just one blog. I know each person with dissociation or D.I.D  is different and their signs and symptoms maybe very different from my own so please bare that in mind.

Finally a few weeks ago I shared this video of my story of Living with D.I.D. I am posting it again here for those who missed it first time round. my hope is that this will enable more people to understand what life is like for those of us with a dissociative disorder.

Copyright DID Dispatches 2014