A long journey

On the 2nd May 2015, I was sat in a car park, on the way to work, and I had cut my wrists. I had phoned my mum, terrified I was going to run into traffic. As soon as I had hung up, I realised I didn’t want to be saved.

I cant remember much of the next 18 months. I know that I was desperate, that my sole intention was to kill myself when I could get the chance. And there were times I nearly succeeded. I stopped eating and drinking and was taken in and out of hospital for glucose and fluids. I remember fighting that, I didn’t want them to help me. I couldn’t understand why the staff didn’t just give up on me. I spent hours head banging, trying to escape myself. I still have two ridges in my forehead and I spent a long time with an open split on my head where I had gone too hard.

My mental health story started long before that. Aged 14 I was being bullied at school. It wasn’t just name calling, I was pushed over a wall, slammed in a door. There were comments made on a bebo page- one of which stuck with me. That I was better off dead. That was the first time suicide entered my head. By the end of year 9, I was self harming and bulimic. I felt so alone.

I moved schools for sixth form and found my  feet, still suffering from an eating disorder and self harm, but I was feeling happier. I had a group of friends. For the first time in a long time I felt like people liked me.

The same came when I started university. For the first term, I loved it. My eating improved, I mostly stopped self harming. I was feeling well. But then I was raped and my world fell apart. Almost immediately my eating disorder took over. My depression clouded me. By second year I was anorexic. I’ve never felt so isolated. We lived in a horrible flat. I remember sitting there trying to persuade myself that I could cope. I managed to finish second year with a 2:1 but I didn’t feel any sense of achievement. I was completely in the grips of failing mental health.

In December of third year I was admitted to an Eating Disorders Unit where I spen ten months. I came out still struggling anorexia but then months later I suddenly flipped back to bulimia. Horrendous bulimia. I was binge purging on 1000s and 1000s of calories. Once my bank even rang me as there had been so much use of my card. I was falling apart and was admitted to an acute unit, twice. I came home, relapsed and that started this admission.

I’ve spent too much time in hospital. I’m tired of living by a regime. I want to be able to wake up when I want. I want to work.

And suddenly I’m getting there! This Wednesday I had my section lifted! It’s been the best part of two years since I was free. There is no better feeling that sitting out in the park knowing I can sit in the park enjoying the sun and not being limited to 1 hour. I can walk as far as I want. It’s such a weight off. I’ve worked so hard to get this far and I’m going to keep working.  I have the most incredible family, friends and boyfriend, even when I’ve felt alone, I haven’t been. They’ve been there, every step of the way. I have a 2:1 degree in microbiology and I’m going to use it.

My mental health story doesn’t end here, it keep going but changing course. Two years ago, I was desperate to die. Now? I’m desperate to live.

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DBT; a realisation.

Sat in the corner of my room, tying a ligature round my neck. Pinned to the floor and injected. Lying on a bed being wheeled through for ECT. Fainting and being sent to hospital for glucose multiple times. Being watched 24/7 for over 8 months, no privacy at all. Having a CT scan after headbanging. I came into hospital very unwell and there’s a lot I can’t remember, but I’ll never forget these things.

Thankfully I’m so much further on, the idea of tying a ligature is so far away, I never kick off. I am compliant. Those baby steps I mentioned in my last post? They’ve turned into giant leaps. I’m sat here at home on overnight leave, I’ve been out to town with mum and exercised my debit card! I’ve helped cook lunch. I’ve cleaned the kitchen. This time last year I was just starting to have home leave, escorted by a member of staff for 8 hours only. Now I’m a completely different person.

On Wednesday I completed my second and final cycle of DBT. I remember a year ago starting on the programme I was so, well, obstinate that it wouldn’t work. I didn’t understand it. I couldn’t open myself to it. Now I look back and it has helped me so much.  There were four modules; emotional regulation, distress tolerance, interpersonal effectiveness and mindfulness. Each taught me skills I can use to live with, control and maybe even overcome my illnesses.

Through DBT I found a way to manage situations where I needed or wanted specific outcomes. I learnt how to voice my opinion and ask for my needs to be met without shutting down or disregulating. I started being able to take part in my treatment and to get my needs heard and met. Mindfulness taught me how to recognise my emotions, how to observe them and employ my most effective skills to deal with that emotion, or, simply stop and watch the emotion pass by. I learnt to use pros and cons of a specific situation or behaviour to balance out whether the urge I was having would actually be effective.  I went from feeling awful all the time and reacting immediately  to being able to stop, use my skills to recognise that I was feeling bad and instead of self harming or ligaturing I would distract myself. I would ‘radically accept’ I sometimes cannot change the situation (for instance I have to come back to hospital after time at home) but I can employ techniques to help.

I never thought I’d say thank you to DBT. I really struggled to grasp it, it didn’t really fit with my illness but with help I could use skills from DBT anyway and slowly that opened up a way for me to engage in DBT. It’s very weird thinking I won’t have anymore DBT but I’m so thankful for it. And to anyone starting DBT, stick with it. Don’t let anyone derail your recovery by telling you horror stories of DBT. It’s hard, you will probably cry with frustration, you won’t understand at times, you’ll feel stuck. But, for me, there’s almost a sudden moment when I realised, I do understand this and I am actually using the  skills. I can only say thank you to the therapy team for not giving up on me.

And so from baby steps, this is a giant leap. I’m on the home run.

Taking steps

Its been such a long time since I wrote. It’s weird looking back at earlier posts and reading how ill I was. Was. Today writing, I feel good.

One of the most annoying phrases my consultant uses is ‘baby steps’. I just didn’t want to hear it. I don’t want baby steps, I’ve been here over a year and I’d quite like to be taking giant leaps! It’s hard, my previous admissions were short. I thought my eating disorders admission was long at 10 months but this one trumps that- it’s been nearly two years since I was admitted. For so much of my admission this time I never thought I’d get out. Even baby steps seemed elusive.

So many parts of being a psychiatric patient sunder section are horrible to go through. With the exception of home leave, I have been supervised in the toilet since June 2015. You learn to put your modesty aside when it comes to that! I’ve been put under anaesthetic and undergone ECT because no-one explained to me that I had a right to refuse. I’ve had side effects that made even holding a cup a challenge (sorry to everyone I threw water at!). I tied so many ligatures. I was restrained and injected numerous times in my acute. It felt endless. I felt like a guinea pig, trying and trying to find something that worked.

I’ve been lucky enough to be on a brilliant unit for just over a year. Although I struggle with DBT and a lot of it doesn’t really click with me, some bits of it have helped. Namely mindfullness. But the biggest thing was working in therapy and starting to admit and vocalise whats happened to me.

I had my CPA recently and for the first time I came out of it feeling so positive. My mum was there, fighting my corner as always and it was so nice to feel like things were going finally in the right direction. Mum and Dad have been my rock (along with my boyfriend) and have kept me going, it was so nice to feel they knew things were going well. I started clozapine this year and for such a long time I was scared. But it’s turned the corner for me. Sylvia Plath talked about the bell jar lifting- and that’s what it feels like, suddenly I can breath clearly. I can laugh and talk. For a long time I’ve been adamant that I do not intend to live. That’s changing, suddenly I want a future- I want to live again, I’m starting to feel hope.

So here’s to hope. And to take a moment to remember a lovely friend who was let down so badly.  Here’s to you, I’ll never forget you REBECCAS - WIN_20170401_155149 (2).

 

Hello again. 

It’s been such a long time since I’ve posted. So I guess I better say hello. I’m Becca. I’m still inpatient at the same hospital. I’ve been here just over a year now. It’s weird looking back to my acute where I was being restrained and injected every day. That doesn’t happen here. 

Things can be so tough. The new year for me is a very difficult  time. I saw in the new year with a Pepsi max sat in my room. I really didn’t want to see in the new year. As things slipped I lost things- home leave was taken away. My bedroom door was locked. And then they started me on clozapine. I’ll be honest, when my consultant prescribed it was terrified. It’s one of those drugs that seems so frightening and hard. But I’ve been on it for a while now and apart from knocking me out it’s not been too bad. Maybe it even has helped my nighttime sleep! 

But as I write this I am unescorted in the car park- for only the third time I’ve been outside on my own in nearly 18months. And I’m counting down the hours until I go home tomorrow. It’s hard, inside feels such a struggle and unmanageable, sometimes I don’t think I’m going to be free of my past and my illness. Often I feel hopeless, but even then my family, my friends and my boyfriend help carry hope for me. 

Thank you all for sticking by me, for reading my blog. I love writing my blog it’s just so restricted here. 

An update

I realised I haven’t really updated you on where I’ve been when I disappeared for a while.

A few months ago things were starting to look brighter and I felt like the old me was there, just slightly out of reach. I remember going to my CPA armed with the fact I was the happiest I’d been in years. I had persuaded myself that I might get home overnight leave, that my section would be lifted. I remember being so angry when it became clear neither of those dreams would be happening. I couldn’t understand why they couldn’t see how happy I was.

A few weeks later I found myself spiralling again. I was spending hours looking for anything I could self harm with. I remember one leave where I spent the whole time secretly searching the ground for sharps. I catalogued every sharp I saw, planning to get them on my way back. I soon discovered I was never going to be able to pick them up. My eating slipped again and very quickly I found myself fully in the throws of my eating disorder. It took several hospital visits for me to relent and stop refusing my ensures. I still haven’t got up the courage to eat instead of using ensures and fruit. I hate ensures, but at the same time I couldn’t move onto solid food, they became my safety net. As my weight dropped so did my mood and I lost control of my hallucinations. It stayed like that for a long time. As I wasn’t eating and I was fainting around the ward I lost my leave, I lost my unsupervised shower. I felt like everyone was the enemy, that they couldn’t understand.

Then slowly again things began to pick up. There was a lot of tinkering with my medication but slowly it seemed to be helping, finally. I came into hospital taking only two psychiatric medications. Now I take a lot more. Haloperidol worked but gave me painful side effects. Respiradol might as well have been a sugar pill. But now I’m taking a different anti-psychotic and suddenly I found myself again. I started reading again, I started DBT which really helped, I was able to smile and talk to staff, I wasn’t afraid of laughing with other patients. The side effects kicked in, I’m so shaky I cant hold a cup or walk down stairs. I get verbal ticks when I’m talking. But it’s given me myself back and I’m not willing to lose that. My leave was reinstated. I got home leave and I got to see my house for the first time in over a year. I get time out with my boyfriend too and we go to the cinema. I love being surrounded by people who had no idea I am sectioned.And as the weather improved found the courage to wear t shirts that didn’t cover my scars, and no-one even blinked. Things are good. Yes I’m still very stuck in my eating disorder but otherwise I’m content. I’m starting to see a future. I have my books and time to see my family and my boyfriend outside of a visitors room. Yes I get lows but I’m getting there and that feels wonderful.

 

Acute services with an eating disorder

Inpatient wards are never nice places to be; they can be frightening, frustrating, dictative  wards. Anything other than specialist eating disorder units where the service is designed to support and treat the eating disorder service users are suffering with can make acute or other specialised support all the more difficult.

My first inpatient experience was to an eating disorder unit. I remember sitting in costa after being told I was going to have to start inpatient treatment for anorexia nervosa the next day and phoning to mum to break the news and then having to tell my university that I would have to defer absolutely terrifying. I had only been involved with the eating disorder outpatient service 4 weeks and still hadn’t accepted my diagnosis, it all felt rushed and I was resistant to being classed as an anorexia sufferer. I can’t remember my first month or so but slowly came around to being in treatment and it was refreshing to find others like me who had the same thoughts and experiences with anorexia. The groups were all designed directly to focus on anorexia and drive the sufferer forward in their recovery. There was the medical side of it which never stopped being utterly traumatic in my ten months there and I resisted the weight gain side of treatment and at discharge I barely made any head weigh with the weight side of things but I also left with a whole set of skills and a group of friends who truly got it.

Maybe my experience having first been such a safety net and so understanding has made me biased but I’ve never been able to recreate the experience in acute wards. All my admissions since the EDU have been to acute wards and suddenly I was thrown into the world of adult mental health. Each time I have been hospitalised I’ve relapsed to anorexia, maybe not in weight although in some cases lost a significant amount of weight but in behaviours. Every time it’s reached the level where I stop eating and drinking completely. It’s hard on an acute ward to cater to account for all service users difficulties where the funding is low and the supply so demanding. It means though that eating disorder patients can easily slip through the net and only picked up upon when crisis level has been reached. I’ve found that as I’ve moved through services my ability to sustain a low weight and lack of nutrition has deteriorated and in this admission found myself in general hospital for IV fluids. It’s come to the point now that everyone accepts I won’t eat meals and instead have ensure drinks. It can be quite isolating not finding myself able to eat meals in the dining room and I find myself wondering how have I found myself in this position, again.

Acute wards are all about survival and crisis management but this is often to the detriment where specialist services are called in. The level of support and guidance an eating disorder patient is simply not available and in an ideal world that wouldn’t be the case. But for now it’s not and that needs to change.