The De-escalation Room

The de-escalation room has become a room I have spent many hours being restrained in. It’s a small room with a few soft chairs and that’s it. I just wanted to share what it feels like to be in that room.

It’s scary, suffocating, closed in. Utter panic runs through my veins and frustration bubbles, boils and overflows as the actions anorexia wants me to take are stopped forcibly. I want to cry and scream and shout and kick and sometimes I do. Overwhelming. Terrifying. Darker than dark. That’s what it feels like to be in there. Locked in.

But I understand it, I understand why I am there. It’s for my own safety and wellbeing I know but that doesn’t make it any easier especially when anorexia has taken over.

I’m in a scary place right now and de-escalation has become the place where I spend most my time. Sad really to think that life has come to this.

Going To Cygnet

This time tomorrow I’ll be on my way to Coventry to go to the new cygnet hospital. It’s been a long wait, I’ve been in a general hospital since December.

I don’t really know what the plan will be as I can’t really remember the assessment and haven’t been able to visit the hospital beforehand. I feel very nervous and scared about it all if I’m totally honest. I have many fears about it, especially worrying I’ll be the fattest there.

I don’t know if I’ll be allowed my phone/iPad/internet so I might not be able to post for a while but I wish all my readers the best.

This is not a goodbye but a see you soon.

Claire x

One Week To Go

A week today I will be on my way to cygnet in Coventry to begin my recovery journey. I’m feeling super nervous about going and my illness is trying to convince me I’m too fat to go there. I’m full of urges to end my life and/or abscond. I really don’t want to go.

I don’t know a huge deal about where I’m going, I don’t know whether I’ll be allowed my phone or iPad or be able to go on the internet so I may not be able to continue blogging.

So here goes, let the countdown begin.

 

My Nightmare At The Secure Unit

TRIGGER WARNING: mentions numbers

Okay so I wasn’t going to write about this for the sheer fact that the unit is still open and my experience doesn’t mean everyone’s will be like mine. For these reasons the unit will not be named.

I went to the secure unit in May 2016 because my personality disorder made my self harming behaviours too dangerous to remain on the acute ward or to go to the retreat like we had planned. It was a nightmare. My memories of it are blurred due to the effects of starvation and the lifestyle I had to lead there.

I had begun restricting my eating just before I left for the unit and it continued unnoticed whilst I was there. Then in June 2016 I stopped eating completely and as a result my family visits were stopped. I felt punished and still feel this was unfair and my parents had to fight to be able to visit me. My dad turned up for his Father’s Day visit only to be sent away which was heartbreaking for the both of us.

They began monitoring my weight and bloods and these slowly decreased. In September I was admitted to a general hospital for refeeding through an NG tube and I then returned to the unit where I continued to lose weight and was admitted again for refeeding via NG tube in November.

I hit my worst point in December. It was my mum’s birthday and I walked into the visiting room singing ‘happy birthday’ and mum just burst into tears at the sight of me. A week or so later my ECG showed problems with my heart and potassium levels and I was admitted to a general hospital again for refeeding and heart monitoring and I was put on a potassium drip. I returned to the unit. A couple of days later I was called into the quiet room in the evening. I was told I’d be seeing an eating disorder specialist at 8am the next day.

I was woken up at the crack of dawn and assisted to the shower. I was so weak and hasn’t showered in weeks, I had to sit on a chair whilst the staff member washed me. I then was assisted to the visiting room to see the eating disorder team from my local health board. They felt it necessary that I come into the general hospital I am in now as a matter of emergency. They weren’t sure I was going to survive at a weight of just 32kg. I had no phone or iPad at this point and the thought of taking a picture of myself didn’t even enter my very poorly and starved brain so  to the haters, no I don’t have any proof of how poorly I got physically just the memories that are left with me of that time. The times when I couldn’t walk to the toilet on my own or straighten my legs and my body hurt so much.

It wasn’t just the starvation side of things that made the unit I was in a total nightmare, a lot of things happened. I never went outside, the whole 8 months I was there the only times I went out of the tiny ward were to go to hospital. I wasn’t allowed anything in my room, not even cards people sent me, I wasn’t allowed a pen or cutlery or access to the Internet or my phone or iPad or computer. At one point I wasn’t even allowed my clothes and I wore anti rip smocks for months. One time early on in my admission when I was still having periods I wasn’t allowed a sanitary towel and I literally had blood running down the insides of my legs.

We were often locked out of our bedrooms leaving us with a little room with a tv to spend our entire day in with very few activities going on. We were never allowed in the toilet alone and were  given toilet tissue one square at a time.

I had to move rooms during my admission after another patient tried to strangle me and I have to admit I didn’t resist. I hoped she would kill me.

The first night in this general hospital when I had brought all my belongings from the unit knowing I would not be returning I was distraught. I phoned mum and sobbed on the phone to her telling her I felt like I was in a living nightmare.

I was so poorly I couldn’t do anything so there are no posts or photos from these times just my word which seems to be questioned often and that does upset me. So please think before you comment to or about me that actually you don’t know the full story. This is the last time I respond to hate.

Mental Health Tribunal

Yesterday I had my mental health tribunal which was equally stressful and scary but today I am feeling better and reflective about it and thought I’d share my experience of a tribunal and my care plan for the future.

There were many people in my tribunal, the tribunal panel which consists of 3 people: a doctor, a judge and a lay person and then there was my psychologist, psychiatrist, nurse, eating disorder nurse, social worker and my lawyer on top of the nurse and support worker who were with me on my 2:1 observations.

I was taken to the tribunal in a wheelchair and we heard evidence from everybody who they felt was relevant and hadn’t covered it in their report then came the anxious wait for a decision. The decision was made that I remain on my section 3 and go to Cygnet Coventry in May. At the time I found this decision distressing and tried to do a runner, I was restrained in my wheelchair all the way back to my room and then I pulled my feeding tube out in total despair and upset. I was restrained until I calmed down.

Today I feel okay. There is nothing I can do about their decision and I guess if that many people agree I should remain in hospital then they must be right and as much as I hate it here I have to radically accept my situation.

So what’s the plan from here? Well in 13 days I will go to Cygnet Coventry and give recovery and my chance at a normal life the best shot and then if that fails and the placement breaks down it will be palliative care. Why palliative care? Because out of all the units that were approached only this one accepted me due to either my bmi and anorexia being too severe or my emotionally unstable personality disorder and self harm being too bigger risk. This unit feels they can manage and treat both.

So whilst I’m gutted to still be in hospital under section I am looking onwards and upwards to a new beginning in the near future.

Building A Life Worth Living: Thinking Of Life Outside Hospital

Building a life worth living is a big part of DBT and it’s something I haven’t worked on much or even thought about until recently. I’ve been unwell for well over a decade and have been in hospital for a year and a half. I’ve never been a mentally well adult and have not been able to function at a normal level since school. For these reasons I have always found it very difficult to think of a life outside of my illness and in some ways that can hold me back in recovery. However just weeks before I’m due to go to a specialist unit which can help me I have an idea of how life will look when I come out of hospital.

I know I won’t come home fully recovered and jumping with the joys of spring but I imagine I’ll be able to function. I want to attend outpatient appointments with my mental health team but alongside that I want to work in a bakery, go to ballet classes, help out with the younger ballet classes and prepare and cook my own meals and snacks from scratch. I could then channel my obsession with food down a productive and enjoyable route whilst still enjoying dance and exercise at a sensible level.

If I can maintain that lifestyle for a while then the next step will be learning to drive and getting a place of my own even if that’s renting a studio flat. Then the next step, and the one I’m most excited about will be becoming a mother. I’ve already decided for very personal reasons that I want to be single so I will go to a clinic and use a sperm donor to conceive.

I think it is good to go to this new unit with an image of what I want my life to look like when I come home. So this is me thinking of building a life worth living.

Mentally I’m Still Twelve

I got ill with mental illness very young and in a way it stole a lot of my childhood and teenage years away from me. I didn’t get the experiences that other young people had. I never went to university and experienced freshers week, I never experienced my first drink on my 18th Birthday or pizza parties, school canteen food, having fun. Instead I experienced self harm, starvation, suicide attempts and binge eating. For all of my secondary school life I was in a very dark place. And whilst I had to grow up very quickly in some ways, in other ways I remain the twelve year old girl I was when this illness really took its grip and that’s hard. It’s hard to be in an adult world still feeling like a child and only with the life experiences of a child.

I have spent all my life being looked after. As a child I was looked after by my mum and dad and as an adult I have been looked after by nurses and support workers. I crumble with the slightest bit of responsibility that is given to me. For the past year I haven’t even showered or gone to the toilet alone. In fact when I was in the secure unit I wasn’t even trusted to hold the toilet paper myself and was handed it one square at a time.

I’ve experienced trauma and pain and my illnesses have been very distressing and quite frankly horrible. In many ways I have been through more than most adults and yet those very things are what have kept me a child in an adults body.

I still long for my mother, for her hugs and kisses and hand holding. My dad manages my finances because I cannot. I kiss and cuddle and coo my dog. I have teddies on my bed and sleep with the light on. I wear children’s clothes because that’s all that will fit me. I have to ask permission to do anything and I am often told ‘no’. The slightest thing upsets me and throws me into complete and utter turmoil. Tears run down my face, sobs escape my mouth and arms and legs flail. Yet I am old enough to be married with children and have a mortgage and that’s hard. I feel like society puts expectations on me that I cannot meet and my illnesses and situation keep me from growing up even when I’m meant to be a grown up. It’s hard and confusing, scary and shameful to admit but whilst I may be in my twenties, mentally I am still twelve.

If I Were To Get Well…

This week my psychologist and I spoke about if I were to get well and what it would look like and my fears around it and to be totally honest I can’t remember what it’s like to be well. It has been over a decade of illness and nearly two years since I came into hospital after a handful of shorter admissions.

If I really try to imagine it I imagine a ‘well’ life to be quite good. I wouldn’t be in hospital and I’d be at home again with my family and my dog. I’d bake and cook meals and snacks for myself, I have hoards of recipes saved for when I get better and I can’t wait to try them out. I would enjoy eating, an idea that seems incredibly alien to me right now. I would go to ballet and help out with the younger classes. I would go to the beach with my friends and laugh the night away at karaoke. I’d watch telly with my family and go to the cinema with my dad. I’d play on the 2p machines at Barry Island with my mum. I would have my freedom back and I could go on walks alone, just my iPad and me. I’d experience new things, new foods, new places. I would live instead of exist. I would be able to be an adult although that absolutely terrifies me.

Everything about getting well is full of uncertainty and it completely overwhelms me. I’m scared to eat again, it’s been nearly a year since food passed my lips and it terrifies me to think of the day I have to put it in my mouth again. I don’t even know how my stomach would physically handle solid food after so long. I’m scared of the taste and texture and ‘greasy’ feeling food gives me. I’m scared to gain weight, to be fatter than I am now. I’m scared that none of my clothes would fit me. I’m scared that being bigger would make me hate myself even more than I already do. I’m scared of the responsibilities that come with life, I’ve got a lot to learn, and I’m scared of the day another of my loved ones dies, it feels unbearable to think about my mother and father dying. I don’t even think I could handle my dog dying. I need to reintegrate back into society and that scares me, even the thought of standing in a supermarket aisle terrifies me at the moment because I am so used to these four walls. I also worry that I wouldn’t have anything to blog about. My whole social media outlet is centered by mental illness and if I were to get well then where would that leave me? I’m not sure that I know who I am without all of this and the thought of being an adult terrifies me. I might be in my twenties but I don’t feel ready for that yet. What would I do for a career, I mean I don’t even have A levels, would I have to go back and study? A recovered future is full of questions. If I were to get well then I wouldn’t have a mental health team around me, these people I have known for years will not be in my life anymore and that really scares me.

I want a normal life, a recovered life but I’m not sure that it’s possible and that makes me feel a bit torn when it comes to recovery. Part of me wants to really give it a shot but the other part wants to give up and die and I can’t say which side is winning at the moment although it is probably the latter.

I Tried To Take My Life Last Night

I’ve been debating whether to write about this all day because I don’t want to be too negative but then I realised if I truly want to speak out about mental health then I have to talk about the darkest parts too. So yes, last night I tried to take my life.

I feel rather hopeless at the moment. I’ve been in hospital since 2015 and I can’t remember what it’s like to be a part of society and some days I’m not sure that I want to be a part of society. My life has become sitting in a room watching films with two members of staff either side of my bed. I’m scared of my first night sleeping on my own, of tasting food for the first time, of stepping outside, of talking to people. Everything scares me and in a way this has become comfortable. Comfortable but I also hate it. I want to go home and just be allowed to not eat but they will not let me because I will die, because even though I was in hospital I nearly died. I’ve appealed against my section but the chances of my section being lifted are very slim. This is my life and I don’t want it.

I know most people don’t want to hear this but the majority of time I do not believe recovery is possible for me. Please if you are suffering do not let that lose hope for you, that isn’t what I want to do but at the same time I don’t want to stay silent in my darkest moments.

Life is painful right now, each feed is intensely distressing, I have to take it hour by hour and sometimes that’s too much. I just can’t stand being in the body I am in, I can’t stand myself and I wish it was possible to leave this world without leaving a massive black hole.

Last night wasn’t impulsive, it was planned. I had the means hidden for a few days and I knew I was going to do it. I timed it well and knew how to do it without the people next to me seeing. I thought I was going to die but they heard the sound of me gasping and that was it, I was caught and the means were taken from me. So here I am still alive and to be totally honest I’m a bit disappointed that I am. I have dots all over my face and neck from where my blood vessels burst.

I don’t have the means to try again and I won’t for now but I just wanted to speak out from the bottom of this deep dark hole. I just wanted to be honest with my struggle.

It’s my birthday on Thursday and part of me wants to really celebrate it because I nearly didn’t make it due to my anorexia and due to last night but the other part of me doesn’t want to celebrate at all because truly and honestly I wish I hadn’t been born. Then I wouldn’t have caused all the hurt and pain and trouble I have caused by being ill. Then I wouldn’t have to feel all the distress I do. This is my raw honesty.

 

The Secret Life of Pets and Mental Illness

Living with a mental illness is horrible, it comes with really tough times, a lot of emotions and nasty side effects from both medication and talking therapies. By this I mean the pain of opening up your whole life to a therapist or the nausea and sedation from your new pills. Throughout my battle with mental illness my dog, Candy, has eased my distress no end.

When I was well enough to live at home being greeted by Candy’s wagging tail means the world. I am someone and I am wanted. When she cuddles into me whilst I cry it makes me feel less alone. Those difficult, dark hours through the night were made better by the dog I had sleeping beside me on my bed. I have stroked her under the chin and told her that I’m sorry when I’ve attempted to take my life and seeing her with her tail tucked in tells me she understands. Pets get it, perhaps more than humans do.

I have really missed being around animals since coming into hospital in 2015. It’s a real shame that animals aren’t allowed on the ward and therapy dogs don’t visit. I think it’d really help anyone in hospital regardless of whether they are there for a physical or mental health condition.

The other night my mental health team allowed me to do something special. I was allowed down to the entrance in a wheelchair to meet my parents and Candy. She was so excited to see me and she cuddled into me in my wheelchair and I instantly felt relaxed. My stresses and worries from the day disappeared slightly. I became mindful. All I was thinking about was the beautiful animal on my lap. I was 100% focused on stroking her coarse fur and running my fingers over her smooth ears. For me animals are magic. Pets bring humour, happiness, unconditional love and companionship and I dread to think of my life without Candy in it.