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.

One Month To Go

A month today I will be transferring from the hospital I’m currently in to my new unit, Cygnet in Coventry. I know pretty much nothing about the place which terrifies me. I have no idea about routine, about whether I’ll be allowed my iPad/internet or what the deal is with visitors. I will be going to a place I’ve never been to with people I’ve never met and will be expected to stay there for a long time.

I’m dreading my last night in this hospital, I doubt I’ll sleep knowing what will happen the next day and I will be very sad to say goodbye to the staff here. I’m scared to leave, I’m used to the staff, the routine, everything. I know where I am and what is happening. I don’t want to leave that.

I’m dreading the car journey down there despite it being with staff I’m very close to. Those two hours will be full of anxiety and fear. It’ll be like a very long goodbye and goodbyes are never nice.

I can’t even begin to imagine how alone and scared I’ll feel tucked into my new bed on my first night there, so many miles away from everything and everyone I know.

My only hope is that I win my appeal at my mental health tribunal later this month otherwise a month today this will be the reality I face.

Sectioned: An Update

A couple of years ago I made a short video with Fixers about what it’s like to be sectioned for an eating disorder. This came about after I saw a comment online saying, “I wish I could be sectioned so that I could have a hug” I was utterly shocked by this. Being sectioned is not something I have ever wanted to happen to me and hugs are very rare when you are in hospital. After reading the shocking comment, I made ‘sectioned’ which can be watched here.

My life has changed a lot since then, a lot has happened and when I watch the video now I wish I could update it so I thought I’d do it in a blog post. In the video I had only experienced being sectioned under section 2 of the mental health act. I have now been detained under section 3 of the mental health act since 2015 and this is still on going.

In the video I talk briefly about the two weeks I spent on level 3 which is where a member of staff remains with you at all times, this includes in the shower/bath, on the toilet and whilst sleeping. I have now been on level 4 2:1 for 2 months and this is also ongoing. This means two members of staff are within arms length of me at all times. So now it’s not one pair of eyes on me while I sleep, go to the toilet, shower etc but two pairs of eyes on me. I haven’t gone to the toilet unsupervised since May 2016.

My ‘choice’ remains the same. I have to drink sickly, gloopy supplements or they go down the tube I have up my nose. The difference is that now I can’t bare to let it touch my lips and so everything goes down the NG tube. I say ‘choice’ because I don’t really get a choice, I have to have the supplement drink one way or another. Some days I am restrained whilst they pump the feed down my tube.

I still feel my skin crawling with calories, itching, bubbling. Maybe this sensation will always remain with me around food, maybe it will never go away and that scares me.

In the video, I say “The final section, I hope it was” and I am gutted to say it wasn’t, I have a few more to add to this list. I wish my update was that I was living a normal life and the facts of the video had not changed. I wish I could say I was well rather than wishing I could remake the video to fit with my current circumstances.

My message remains the same: Mental illnesses are not fashion accessories, eating disorders are not glamorous and being detained under the mental health act is not something to strive for. This is still my life and I would not wish it upon anyone.

I Need Some Alone Time

I’m on 2:1 level 4 observations which means I have two members of staff (one qualified nurse and one nursing assistant) within arms reach of me at all times. It has been like this for nearly 2 months. I am never on my own. They are with me when I’m using the toilet, shower/bath, when I’m sleeping, when I’m changing clothes, washing my hands, blogging and tweeting. They are always there and I get no privacy.

Right now I just want to be on my own, in a silent room to let out the tears I’ve been holding back for so long. I want to be able to tweet, blog, Facebook, instagram without staff watching over my shoulder.

Alone time was always so sacred and important to me. I enjoy silence too. It’s nice to be in a field with no one in sight and the silence is only broken by the sound of your own footsteps. I used to sit on my sofa with no TV on, just total silence and I enjoyed it. It calmed me.

It will be this way until I go to the new unit in May. I will then have done nearly 6 months with two people either side of me at all times. I don’t think I can do it, but then again I don’t have a choice. This is how it has to be.

Update

Okay so it’s been a while, I spent 8 months in a secure unit with my weight dropping and my mental health declining, then in December an eating disorder nurse from my home team came to see me at 8am in the morning. I remember being woken at 7am and having a shower on a chair because my legs would not stand and then being whisked off to the relaxation room to see her.

The nurse wanted to admit me to a general hospital for refeeding but I refused as it was so close to Christmas and I just wanted to be where I felt settled for the festive period. That night I was driven back to my home county and admitted to a general ward. I felt like I was living in a nightmare. I had an NG tube inserted and was started on a feed straight away, drips were in my arms and blood tests taken.

A month later, here I am, still in the same bed, still being fed through a tube and struggling enormously. I feel fatter with each day, the sips of ensure are getting harder and not easier. The plan from here is to go to an eating disorder unit in London which I’m super scared about. I don’t know any more. This battle is hard.

Section 3

I’m sitting on the end of my bed in hospital. Numb but in pain. I don’t understand anymore. Utter confusion. Dreaming of a future like a child, imagining I’ll be a vet or a teacher but seeing reality like an adult…I am just a psychiatric ward patient….I probably don’t even deserve the word ‘just’ in front of that. I’m a nothing, a no one. Three months locked away has completely detached me from the world around me. I belong nowhere and with no one. The world outside the window doesn’t feel like mine. It’s like I don’t remember what the rolling hills look like, nor the supermarket aisles or petrol stations. My ballet shoes disintegrated when my life turned into compost. Maybe new flowers will grow out of the soil but I doubt it. It feels like I’ll never feel the sun on my skin again and that my heart will never vibrate with the bass of loud music. Will I always be gone? Will I ever find me again?

BBC Breakfast Interview

This morning I spoke on BBC Breakfast with Matthew Ellis, Staffordshire’s police and crime commissioner to talk about the use of cells as a place of safety for people suffering from mental illness.

A home affairs committee report has called for a change in the law so that cells are no longer deemed a ‘place of safety’ under the Mental Health Act. I spoke out about my experience of the night I spent in a cell due to a mental health crisis. I was not violent, I had not done anything wrong, I was unwell. You would not leave a physically ill person in a cell and in the care of police officers so why would you leave someone with a mental health problem in this situation? Mental illnesses are health problems requiring health care.

I hope by continually speaking out and raising awareness then change will happen. If we are to end the use of cells then we need to improve care. More beds are needed, there’s a lack of funding, a lack of staffing. We need changes not only in crisis care but in the little bit before crisis care when people are saying “Look I’m really not okay, I need some help” and are often brushed off or sent home and told to have a cup of tea. If we are to succeed in ending the use of cells, we need major improvements in our failing health care system.

bbc

“You don’t have what I would call true mental illness.”

This is a sentence that was said to me during an inpatient admission last year and it’s a conversation I have thought long and hard about and I feel it is vital to post about because there are myths and stigma within the mental healthcare system and personally I find that quite shocking. If anyone should understand, surely it should be those who work in the sector?

At the time I was detained under Section 2 of the Mental Health Act. I was on level 3 observations which is where a nurse or healthcare support worker is with the patient at all times, also called ‘within eyesight’. Usually they sit on a chair in the patient’s doorway. So the healthcare support worker (unqualified) who was sat with me at this time said to me that I didn’t have what he would call true mental illness because I could hold a conversation. I was outraged, I was poorly enough to be legally held in a hospital, and to be watched constantly, of course I had ‘true’ mental illness. Yes, I could hold a conversation but what does that have to do with my mental illness? I was struggling with anorexia nervosa, low mood and suicidal feelings. It was a sentence that simply makes no sense, if I think back to my last admission all of the patients could hold a conversation. I would understand if this comment came from someone with no experience but this is someone working on a psychiatric ward.

There are many myths that exist within services and I think they are a lot of the reason why young people in particular are often not given the help they need. Another common one is, “but you’re well dressed.” It takes me 5 minutes to throw my clothes on and throw my hair up in a messy bun but unfortunately (or fortunately) being a 22 year old my wardrobe is full of Topshop, ASOS, New look and Primark clothes and my wardrobe does not suddenly empty and re-fill with ‘mental’ clothes because my mental health takes a nasty turn. Nearly every urgent psychiatric assessment I have had they have used the way I am dressed to basically say that I am fine when I have been so poorly. It didn’t matter if I had worn those clothes for an entire week, they would still tell me I’m well dressed.

I almost feel that when it comes to getting help from mental health services that there is a ‘young persons curse’ because my skin is youthful and my clothes fashionable and I can hold a conversation about the modern day because you know what I wasn’t born in the 60s or the 70s or the 80s so no I can’t be stuck in the past! It’s their ticket to say that the patient is fine, looks fine, will be fine when really it’s the polar opposite.

“You have capacity” is a sentence they used in the weeks running up to my recent detention under Section 2 of The Mental Health Act. This is when the thoughts were constant, everything I looked at was telling me how to die, I had the thought to hurt myself on everything I saw, everything I walked past, everything I thought about. I was screaming at them that I didn’t want to hurt my family, I didn’t want to ruin their lives and all they were telling me was that I had capacity, that it was all my choice! How did I have capacity? I could focus on or remember anything that was going on around me, I couldn’t think of anything else but dying but regardless of capacity I was unwell and unsafe and needed help.

There is a lot of stigma around mental illness, a lot of words unspoken and many myths floating around but if they need to be dissolved from anywhere, they definitely need to be dissolved from mental healthcare services.

The TRUTH of Being on a Psychiatric Ward

I feel that this is an important topic at the moment as I often come across people who do not understand or realise the true picture of what it is like to be a patient on a psychiatric ward.

I come across people who tend to think that a psychiatric hospital is full of ‘loonies’ and that the patients are put in rooms with no furniture wearing straight jackets. They seem to have this idea that these patients do not look similar to you or I and that any ‘normal’ looking person should not be in there. They tend to have the idea that patients behave in particular stereotypical ways, for example licking windows or biting people. I have had numerous admissions to several different wards and I can tell you that this is not the case. Ever.

I have also come across people who want to be admitted to a psychiatric ward and not because they are ill but because they glamorise them. These people seem to be under the idea that it’s a giant sleepover and they’ll make friends and have fun and have hugs off the nurses. I genuinely have come across a post on Tumblr saying, “I want to be sectioned so that I can have a hug whenever I’m sad.” I’m not sure I will ever stop being shocked by that post. There is nothing glamorous about psychiatric wards. The other patients tend to be very unwell and not a place where they want to make friends, the wards are often short staffed, you will be able to speak to someone if you are struggling but the staff aren’t there to make friends with you. It’s not a hotel, or a school residential. It’s a hospital.

There are also the people that assume you will be discharged and no longer have a mental health problem. They seem to believe that miracles and fairy tales exist. You will come home and be right as rain. That isn’t true. I often struggle to adjust to home and have to work incredibly hard not to relapse straight away. Standing on your own two feet after weeks or months in hospital is difficult. More importantly ‘true recovery’ takes place in the community. A hospital ward is an artificial environment, a bubble. It is very different to life outside of hospital. Hospital often stabilises the patient but that is only the beginning of what can be a very long journey. I know in my case that it will take me years to get better and even then it will be a life of relapse and remission. I am never going to be jumping for joy and completely free of my illness and I accept that but I know it can be difficult for others to accept.

This Is My Experience of Being On a Psychiatric Ward

At the start of my admission I was on level 3 observations, which means that I had a nurse or healthcare assistant with me at all times, and I mean ALL times. I was watched sleeping, bathing, going to the toilet, getting dressed. I had no privacy, no dignity. It was embarrassing, they even watched me go to the toilet in a pot and I would have to stand by them as they measured it. I hated it. You don’t particularly get better privacy if you aren’t on level 3 observations. There isn’t a single room that the staff can’t get into, your bedroom door will have a window in it and not all the staff knock before entering. It is quite likely that a male will walk in on you getting dressed in your bedroom.

Ward round happens once a week. I found it incredibly intimidating. I would walk into a room with 6-8 people in, doctors, social worker, home treatment team. The psychiatrist in charge of my care would expect me to talk about how things are and it would be my only opportunity to ask questions about my care and treatment. Often, I could not talk because the amount of people in the room made me feel too anxious, too much in the limelight. They told me I could ask to speak to the doctor alone but when I asked for this the doctor told me that it was important that everyone was in the room so that they could make decisions on a joint basis. I think it would’ve been more important for me to feel comfortable enough so that I could talk.

I had all of my belongings taken away. Not just my phone, or my shoes with laces. I had everything taken off of me including knickers, books, get well soon cards. They were all locked away in a cupboard.

There is no choice over medication, well there wasn’t for me as I was detained under the Mental Health Act. Several times a day a nurse would walk in with a little pot of pills for me that I couldn’t refuse. If I was becoming distressed I would be given lorezapam no matter what the reason behind my distress was. More annoyingly is that there are specific times for medication. Night meds are generally given out between 22:30 and 23:00. At home, I usually go to bed around 21:00-21:30. I would often be waiting around, sat in the corridor in my pyjamas waiting for meds so that I could go to bed. My night meds would not wear off very early in the morning as a result so I would be waken up for my breakfast feeling groggy and sleepy. It was not ideal.

I would often feel like a pin cushion. Hourly blood sugar tests. Daily blood tests. Daily blood pressure. Weighing. Regular ECGs. It could often feel like too much. My mood was low, I was exhausted. I just wanted to rest and have peace.

I did feel trapped. Locked in no matter what. If the ward became a loud, stressful place then I had to breathe through it. If I had a situation to sort outside of hospital then I couldn’t, even if that was bailiffs threatening to come to my house. I wondered if I would be able to see my sister on her Birthday. I was stuck in that building for 2 months.

It can get very boring, especially towards the end of an admission when I was beginning to feel better and stable. There was nothing to do and it isn’t just that day, I sat there bored knowing I would be in the same building for at least 2 more weeks. It felt like forever. There is no social life, but the world outside doesn’t stop. It makes it difficult to join back in after being discharged. There’s restrictions on visitors, they refused my best friend entry and I haven’t seen her since. That lost me my best friend. My mum was only able to visit at certain times and often her work and visiting hours didn’t fit in with each other. I spent a lot of time on my own.

There was the occasional positive moment. A one-off writing class or a Saturday morning spent glass painting. A game of pool during a quiet time on the ward. These moments were few and far between but I am grateful to the staff that managed to put a smile on my face even when I really didn’t feel like smiling.

Psychiatric wards save lives, they certainly saved mine. They did not put me in a straight jacket and I assure you I did not lick the windows! It certainly wasn’t fun, it was horrific. I am not now healthy and happy but hospital gave me the foundations on which I could begin to build my life again.

The Mind Media Awards 2014

Wow! What an inspirational night!

I have shared my experiences of mental ill health in the media, particularly focusing on my experiences of spending a night in a cell after being detained under Section 136 of The Mental Health Act. As a media volunteer for mind I was invited to the Mind Media Awards in London last night.

It was such an amazing, inspiring night and I am still buzzing, I truly believe that it is possible to make changes in attitudes towards mental health as well as treatment of mental illness. A highlight was seeing Michael Buchanan and Andy McNicoll win their much deserved award, particularly as I worked with Michael Buchanan on the S136 piece which, again, highlighted the bed crisis.

Last night showed how as a society we have come on leaps and bounds. It was the norm to be silent about these illnesses not so long ago but as more people are speaking out we are stamping out the stigma that exists. Imagine a world where no one has to be ashamed or hide away whilst their illness destroys them. Imagine a world where we treat each other with compassion instead of judgement. It’s possible.

TV programmes such as ‘My Mad Fat Diary’ and ‘The Dumping Ground’ are highlighting mental health problems in a more truthful light than ever before. The character suffering from a mental illness is not put into the script for comedy purposes. More importantly, programmes such as ‘Rugby League: State of Mind’ which target an audience that is often hard to reach and starts life saving conversations.

There were so many inspirational individuals and stories last night, 15 year old Ellen won an award for her amazing OCD blog and Deana Collins, Karen Bonsall, Mary Brailsford and Richard Ward won the Speaking Out award for their brave, persistent and life changing work.

Last night made me even more determined to continue speaking out and reaching out because change is possible. You might think that one voice won’t make a difference but it really, really can. I will not be silenced by my illness.