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.
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 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?
As cliche as this sounds, I can honestly say that I would not be alive if it weren’t for music. Music has got me through the good times, the bad times and everything in between. I will never forget getting up in my hotel room and listening to ‘I’m on top of the world’ by imagine dragons whilst getting dressed before my appearance on BBC Breakfast. I will never forget listening to Meatloaf in the car on the way to the airport before we flew to Rome. That’s the funny thing about songs they hold memories and that can be a double edged sword. Whenever I hear ‘moves like Jagger’ I am plunged head first into the memory of sitting in the lounge in a psychiatric hospital whilst a patient dances around the room. Hearing ‘cake by the ocean’ will always remind me of the cold,hard days spent in utter boredom in the secure unit. There are Ed Sheeran songs that remind me of ex partners and no matter how much I like Ed Sheeran, I cannot hear these songs without feeling like complete rubbish. Music can be therapy but there is also a danger of music being harmful to the mind so be careful.
So, music and recovery. I use music at the moment to get me through my feeds as I’m currently being treated for anorexia nervosa and am being fed through an NG tube. I have a specific playlist named ‘Feed’ which consists of:
- I’m yours-Alyssa Bernal
- Boom clap-Charli XCX
- Learn to live-Darius Rucker
- Starman-David Bowie
- Survivor-Destiny’s Child
- On top of the world-Imagine Dragons
- Cold in Ohio-Jamie Lawson
- Living in the moment-Jason Mraz
- Breathe in, breathe out, move on-Jimmy Buffet
- Little me-Little Mix
- Scare away the dark-Passenger
- Superheroes-The Script
- Let it go-Demi Lovato
- Heroes-David Bowie
- Chocolate-The 1975
- Love my life-Robbie Williams
All of these songs I either find relaxing, recovery focused, feel good or they hold positive memories. I find feeds really distressing and I know a lot of recovery can be distressing, that’s why in DBT there’s a whole module called ‘distress tolerance’. For me, music is my distress tolerance. ‘Cold in Ohio’ always relaxes me whilst ‘living in the moment’ reminds me of mindfulness. ‘On top of the world’ is a proper feel good song and also reminds me of the positive memory when I went on BBC Breakfast. ‘Little me’ gives me the reminder that I want to make 4 year old me proud. Maybe I won’t be able to listen to these songs again once all of this is over but for now they are getting me through and that’s what recovery is about, getting through.
Getting better terrifies me. I have struggled with eating since I was 5 but officially anorexia was diagnosed a decade ago. I’ve spent the past 6 years in and out of hospital. I’ve only lived in Wales for 3 years and I have spent nearly all of that time in one hospital or another.
I am the girl who brings her own food to people’s dinner parties. As my extended family tuck into an Indian takeaway, I shiver over a bowl of soya porridge. As my grandparents enjoy their Sunday roast, I nibble on raw peppers, carrots and cherry tomatoes. That is what has become expected of me. I don’t just have anorexia, I am anorexia.
Hospital has become my home. Everyone knows I’m in hospital and I am used to being here. I’m used to living in this little bubble away from the real world. I’ve forgotten what it’s like to go to the supermarket, or the cinema, or anywhere for that matter. I’m used to spending all my time with nurses and support workers instead of friends and family. I think nothing of having two people watching me whilst I go to the toilet or shower or sleep or do anything. This has become my life. Whilst other people my age go out on a Friday night, I lay in bed with a member of staff on each arm. This is the norm for me. This is my life.
I have become my mental illness. It has become my identity. People follow me on twitter and instagram because I’m ill and my whole accounts centre around my illness. My blog and it’s successes are because of my mental illness. My media work, my speeches…they have all been about my mental illness and that is what I have become known for, for being mentally ill.
So how am I supposed to get better? I don’t know who I am without all of this. I don’t even know if it’s possible to be without all of this. Will I ever wake up and be glad I’m alive? Will I ever tuck in to an Indian takeaway with my extended family and not want to kill myself with guilt afterwards? Will I ever go out with friends on a Friday night? Or have conversations that aren’t about illness or recovery? Who will I be if I get better and this is no longer who I am? I’m scared I’ll become a nobody but I’m even more scared that it isn’t possible. That I am a mental illness and I will always be a mental illness.
I was amazed to receive an email congratulating me on coming in the top 60 mental health blogs on the planet. Mental illness Talk came in at number 41.
The link can be found here
Growing up I was never that close to my parents, I loved them. I loved them a lot but I kept a lot from them. I had so many secrets and they were never where I turned for support and guidance. Now that has changed massively, they are my everything and I conceal nothing from them.
During my time on the acute psychiatric ward my parents visited every single day. I didn’t always tell them how I truly was and we didn’t really talk about my illness but having them there and hearing their voices gave me the support I so desperately needed. When I was in PICU (psychiatric intensive care unit) they visited when they were allowed even though they hated the place and hated even more seeing me, their little girl, in that place. I was then placed in a low secure unit around an hours drive away from my parents, they were only allowed to visit once a week and only for an hour. I phoned them everyday but I still found it incredibly difficult to be without them. I would cry at the end of every single visit from them. Time became precious. Those 60 minutes brought us closer, I loved them with all my heart and I began to tell them things. I would explain on the phone that I was struggling with food or that I hadn’t managed any ensures. I just began to open up with them and it was easier than I ever imagined.
In December my physical state became critical due to anorexia and I was moved from the low secure unit to a general hospital as an emergency. This hospital is a half hour drive from my parents and they have been here every single day no matter what bar the day the car broke down. When I was first brought into this ward I wasn’t just physically poorly, I was in quite a bad emotional state too. Being discharged from the low secure unit made me feel as though I had failed at my placement and it was hard (despite how much I hated it there) to leave everything I had known for the past 8 months. The staff, the other patients, my responsible clinician. Everything that had been around me for those months, I expected to remain around me for a long time. Suddenly being torn out of that placement was really difficult and I needed my mum more than ever. I phoned her sobbing and within half an hour she was there at my bedside along with my dad. She held me as I sobbed to her that this felt like a nightmare.
My sister lives far away and works most Saturdays but you can guarantee when she has a Saturday off she will drive all the way up here to see me and that means the world to me. I am so grateful for the family I have and for everything they have done for me. I can’t imagine how difficult it must be for them to see me so poorly and to have to work full time and find time to see their daughter everyday. I can’t imagine what it’s like to see my bedroom empty for the past 18 months and to know the places I am in, some which have been very scary to witness.
My family means everything to me and I am so in love with them. I wait for visiting hours excitedly everyday. I think of them constantly. Mum, Dad and Helen you are my world and I love you so much-thank you.