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.

Inpatient Unit: Surviving to Day Two

Okay so it’s coming to the end of my second day at Cygnet and so far it has been really difficult but today was definitely an improvement on yesterday. I’m struggling with feed being increased and no fizzy drinks and there have been a number of incidents but I really hated it here yesterday and today I feel like I can manage so it’s probably just a case of settling in. Time on my phone is limited though so updates probably won’t happen very often.

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.

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.

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.

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.

What’s It Like To Be Restrained?

Being distressed is horrible, those feelings of utter desperation, sadness, anger, fear, guilt…the list goes on. All those emotions and thoughts that form a ball of intolerable distress. So you can imagine how horrible a distressed person is feeling but imagine on top of that being restrained so that they can’t move their limbs or go to a different room. They are stuck. From personal experience I can tell you that it’s truly horrible.

I understand why restraint is necessary. Restraining is used to prevent harm either to the individual or to other people. I have always been restrained to stop me from hurting myself or absconding.

Frustration comes to mind when I think about restraint. Frustration mixed with terror, anger and shame. I’ll share with you a recent experience of being restrained. I had attempted to pull my NG tube out and it was half out by the time the staff noticed. They both grabbed me, one on each wrist and with a tight grip. I couldn’t move my arms. At that point I didn’t particularly care as the NG was already too far out to put back in but it still wasn’t nice to be held down. They held my arms for what seemed like ages and I needed to use the bathroom. I was escorted one on each arm to the toilets. After I had used the toilet I wanted to look in the mirror to body check and I admit this often takes me some time. The staff I was with thought I had spent long enough in front of the mirror so went to hold me and escort me out and back to my room. I hadn’t finished and it the distressed state I was in, I felt I needed to finish. So to stop them from walking me out and away from the mirror, I put myself down to the floor and sat cross legged with a person still on each arm. I was so frustrated that I couldn’t do what I wanted to do. I hated that people were holding me and touching me. I was angry at them because they were stopping me from doing what I felt needed to be done. I was also deeply ashamed, there is little more shameful than being restrained. Having the control over your body completely taken away. Being held down so that you cannot move. Being injected with a medication you don’t want and surrounded by staff. Being watched whilst in such a vulnerable position is horrible. I understand that it’s necessary…in fact it’s probably saved my life a good few times in the past but that doesn’t take away how traumatic and horrible it is to be restrained.

Making a Complaint

The complaint process is something I am currently going through and it has not been an easy ride. I was unsure of whether to complain at all because I didn’t want the hassle on top of everything else and neither did I want to make it awkward between me and the staff member I was making the complaint about. Then I realised that actually I matter and this matters. It’s important that the issue is raised and the staff member is educated otherwise her comments could haunt me for years to come. You are entitled to, and have a right to complain about the care you are given. If you would like to make a complaint about the care you have received then contact the service and ask for their complaints procedure.

Stigma Can Be Devastating

Stigma surrounds our society. It means that something perceived as different is seen as unacceptable and this leads to prejudice. There is stigma around the LGBT community and mental health among many other issues our society deals with. Stigma can be devastating because it isolates people and makes it harder to reach out for help and support. It prevents people from socialising, visiting GP surgeries and can even lead people to suicide. “The effects of stigma and discrimination about a mental health problem can be worse than the mental health problem itself” says Louise Penman from Time To Change.

This is why it is so important that people speak out about mental health in general and people share their experiences of mental illness because we need to get rid of this stigma from our society. Imagine a society where people could discuss their mental health easily and openly rather than keeping it as some deep, dark secret. Wouldn’t that be a breath of fresh air?