Friday, 25 July 2014

The Lost Plot

I normally have quite a clear idea of what to write next. I can see where I am in the story of my experience and I know what follows in the sequence of events. But here is where the narrative fails. The plot is lost and I am free-falling with no idea which way is up, or if I will ever feel my feet on the ground.

Between medical notes and what my family tell me I can piece something together, but most of what they tell me may as well be about another wife, daughter or friend. I can't knit together a comfort blanket from the tattered remnants that are handed to me. My mum told me recently that at this point she feared she'd never see me again; that I was lost. All I could really tell you is that at this point she was right. Everyone could see my body and hear my voice, but I was not there with them.

It would be easier to talk about what everyone has told me happened in these lost days, but it fundamentally avoids one of the biggest traumas of this illness. There are horrible things I said and did that I don't have a clear picture of. These episodes haunt my memory and float in and out of focus, elusive ghosts using my mind as their repossessed stately home. Many of my recollections have strong feeling attached to them, but not the details. I couldn't tell you the sequence of anything that happened. From this point my life becomes a sketch, and I am reduced to a line drawing of my former self.

One of the most devastating blows in the early stages of my treatment was being told that they had to put me on anti-psychotic medication that would mean I could no longer breastfeed my son. This was such a severe knock to my self-esteem. I wasn't fit to feed my own baby. I had failed him and now anyone with a bottle in hand could be his mum. In those terrifying days, feeding him and knowing I was the person he needed was the only thing that truly made me feel like I mattered. Now this was being taken away too. I only found out recently that during my psychosis he lost 40% of his body weight and was now weighing just a few pounds. He was a tiny bird-like creature. He needed sustenance and I couldn't give it to him. My illness meant I was in survival mode, and the stress meant there was nothing in my milk to help him. My body knew it was him or me.

Everything overwhelmed, overstimulated and overpowered me. I couldn't write emails or text messages, I couldn't speak on the phone and could only just deal with seeing people face to face. I think that psychosis can often feel even more distressing as the recovery process begins. When I was so ill, I was just existing, surviving moment to moment, but looking back is to see a reflection of yourself that sends shock waves through your once certain sense of self. The face staring back is unrecognisable.

My days now consisted of visits to the medicine room, having blood tests and observations of my heart rate, temperature and weight. Punctuated by hospital meals for lunch and dinner. As well as these regular commitments, there were frequent visits from, and talks to, health visitors, doctors, psychologists and psychiatrists. This was not what I would have said I'd imagined for my first couple of weeks as a mum, but here it was. This was my world.

Even thinking back to those days now exhausts and distresses me. I've always been someone who has prided themselves on an ability to organise my life efficiently, communicate clearly and make new friends easily, but here I was completely debilitated by this shocking disease that had been rotting me from the core. I scuttled around the ward avoiding people one moment and shouting my thoughts and feelings the next. Loudly. Very loudly.

I clung desperately to every self-help mantra that I'd ever practised, if there was a time when my self needed help the most, it was now.

All this shall pass.

It is what it is.

Say yes to your universe.

I knew one thing. I couldn't change what had happened to me and I certainly couldn't control what was going to happen, but I was going to fight. Not with anger and frustration and pain, which although I felt in abundance, I knew weren't my best weapons. No, I would use presence, love and positivity. I was going to say yes to what was happening to me and, no matter what, I would find the lining of this cloud, whatever colour it was. Somewhere very deep within, I believed in myself, my family, love and joy and I wasn't going to let psychosis rob me of what I had worked so hard to obtain; a love of life. The Thing's days were numbered, I was ready for this war.

Love and positive affirmations,
Mutha Courage X

Sunday, 20 July 2014

Gretel's Breadcrumbs

I must start by explaining that everything from this point gets extremely confused. The events, conversations, and chronology are entirely as I remember them. I am the most unreliable of narrators to report what actually happened during these lost weeks, but what I do have are very powerful imprints of what I felt and said, the people that were around me, and the effect the staff had on me. Those closest to me would come to correct me on most details over the process of my recovery, but this was my life, my reality.

I was distraught when my husband left the unit. I was holding my tiny baby, wrapped in the folds of my dressing gown. I was told I should eat. How could I? I was being harassed. Continually told I should eat and drink. I'm trying, you keep stopping me! Stop talking to me. Leave me alone. Every mouthful I forced in fell back out as I sobbed. Never had I felt so utterly alone. Who were these people? How long would I be here? Is this what my life is now? Thank the god of mental illness that I was oblivious to how long it would take to recover. I was surrounded by strangers and couldn't even say I knew myself.

I don't remember exactly when I first met Gretel, but I do remember the powerful effect she had on me. We shared a two bed apartment in Hackney. To outside eyes she was patient occupying the room next door to me on our ward in Homerton. We shared a bathroom and an illness. The first time I saw her she told me that it would get better. I believed her. I trusted her. She had only been admitted two days before me, but to me she was the experienced guide I needed to survive. We moved around like dressing gowned ghosts, fragments of ourselves, full of medication, but we had each other and we had plans.

First on the agenda was that we deserved some pampering. We were demanding beauticians to come in, for manicures, pedicures, massages and haircuts. Due to our separate delusions we had vastly different expectations of what would happen, but we were determined that it would. Every day. It didn't. It was just another trick of psychosis. 

My writing was at fever pitch by now, I carried a notebook and masses of post-it notes with me wherever I went to write down everything that came into my head. One morning I found myself with Gretel at the dining table. We had so many ideas about what the ward needed, we were inspired. It was then that we began coming up with all sorts of amazing ideas, including our name. We were the psychosis(ters). 

At this time I was still very suspicious about medication and I was extremely confused about how the ward worked. It often felt like a prison to me; you had to hand in your hairdryer, razor and iPhone charger, you weren't allowed plastic bags, there were set eating times, visiting hours and security measures to get in or out, no toilet seats and no proper mirrors.

While we were sitting at that table, Gretel said three words that really saved me in those first few days. She said: just do it. Whatever they give you, take it. They know what they're doing. Just do it. Her words spoke straight to me. The me that didn't want to fight everyone. That's what I would do. I wouldn't give The Thing a look in. I would take anything I was offered immediately with no question or fuss and as soon as any resistance came up I would remember to follow Gretel's advice. This is how I would get better. "You're my breadcrumbs out of here" I told her. The problem was, no matter how many breadcrumbs could be laid there were always birds waiting to swoop and stop me finding my way home.

Gretel was just one of a cast full of characters I was about to meet in the psychotic film of my life. 9 women. 9 babies. All struck down with various acute mental illnesses. All determined to recover. It isn't much of a movie pitch, but it was the narrative we were living. The thought of them all now makes me want to laugh and cry. I owe so much of my recovery to each one of them. They were part of my life now, my Hackney family, my story.

Love and gingerbread houses,
Mutha Courage x 

Sunday, 13 July 2014

Valentine's Day (Take two)

It was the 15th February. It was the longest day. It was internal warfare, and there were people being caught in the crossfire every minute. I was perpetrator and victim, captor and hostage, violence and peace-fighter. I couldn't understand the simplest of sentences being spoken to me and yet believed I had true understanding of all humanity. I saw how everything in the world fitted together, I knew how to make myself rich and create an entire empire. But all this time I was also starting the fire that would set anything I valued ablaze.

I didn't leave that tiny room for about 14 hours. I must have gone to the toilet, but I really can't remember doing that. I was in the same clothes I'd been in for over 24 hours. I'd only had my son just over a week ago, so my body was still in a massive period of adjustment. We had been travelling for 6 hours in a car and I felt disgusting. 

My psychosis was stopping me being able to do the most basic tasks without being distracted or aggressive. My moods were adrift on the stormiest sea and my sense of reality was drowning. No food. No water. No medication. No washing. No changing clothes. No sleep. No release from this living nightmare.

What was making everything so much worse was a belief that had slowly been working its way into my consciousness as my illness was escalating. These people are meant to be looking after me and they're not. They're trying to humiliate me. Harm me. Break me. Kill me. 

I was constantly screaming at staff about how they had let me down and weren't welcome in my presence. I wouldn't let them enter my room unless they completed a complicated sequence of knocks and was frequently forbidding them to leave, because of the catastrophic consequences it would cause me if they did. One member of staff remained in my room for hours until an emergency took him away. When he returned I screeched: GET OUT. GET OUT. I don't want to look at you. You have broken my trust. Get out.

My husband didn't fair any better. He was my closet ally. My worst enemy. I remember us being allowed to have food in my room as I couldn't make it to the dining area. I was so angry when the wrong food delivered to me I thrashed around the room, collapsing in the corner. This was yet another tactic of my insanity to stop me getting anything to eat. My husband was desperately trying to encourage me to take a mouthful. Why aren't you helping me? If you want me to eat why don't you make me? I can't do it. Sure enough, one mouthful at a time, he fed me my cold jacket potato and beans. 

After hours of threatening all kinds of legal action for a violation of my human rights and many consultations with all kinds of doctors and nurses my husband was called out of the room. This was real crisis time now. The last mediation. 

You think that you know each other so well. You're husband and wife. Friends. Lovers. Companions. I'd never seen this version. He had no more composure left. He was frantic, teary eyed, pale. Please. You have to take the medication. Please take it. Just take it.

I will.
I'll take it right now.
They're running me a bath. I'll take it in the bath. Tell them to bring it to me.

Action. Everything is happening at what feels like lightning speed. There is a lightness suddenly. Everyone is focused on what to do. I am in the bath. The hot water soothes my sore body. I wash quickly. Visiting time is nearly over and he's already been allowed to stay for longer. I am jubilant. Laughing. I tell Bridget, one of the nurses, to tell him that I'm coming to see him for a date. I'll be all fresh and I'll see him in a few minutes. I'll have taken the medicine. Tell him I'm coming. It's date night. It's Valentines day take two.

I step back into my room. Clean. Exhausted, Hopeful. My husband is not there. He was having constant talks with the medical professionals. I see his bag lying on the side. I see red glitter. My heart swells.

He comes in to get his bag. The time for him to go is here. He sees what I've found, out on the side. This wasn't the Valentine's day either of us had imagined.

"I'm sorry I didn't have time to write anything in it." he says

"That's alright. It means more than the world to me that even with all this going on you found time to get it."

I look into his eyes. A flash of me connects with the love in him. Tears roll down my face. I am lost at sea. In him I see a shore. 

And then he has to leave. The longest day must carry on without him. He can come back in the morning. A real terror clutches at me.

He is gone.
I am alone.
With the most beautiful present I've ever received.
An empty Valentine's card with three words on the front...
You & Me.

Love and Olanzapine,
Mutha Courage X

Friday, 4 July 2014

A Thing Possessed

I thought you were going to look after me. I thought I was meant to be safe here and fed and cared for and allowed to rest. Stop coming in here trying to give me medication like I'm in One Flew Over the Cuckoo's Nest. I mean, do you really have to bring in drugs on those cardboard trays and put them in those little white cups? I'm an informal patient, that means I don't have to take anything I don't want to, right? Right? Am I RIGHT? Stop bringing in doctors and medicine and instructions, I can't think straight. I won't take anything until I understand what it will do to me and to my baby and I can't think straight until I have had some sleep. Is the problem that you think I can't sleep without them? I can. I can sleep on my own, naturally. Just give me some space and let me show you. I birthed my son without any drugs, so if you just let me use my relaxation techniques I can show you. I'll show you now.

I showed them alright. I showed them that I could sleep for a whole 8 minutes without medical intervention. That was how in charge of this illness I was. It was a few hours after this that I was put on a section 5(2) which means I was being sectioned for 72 hours. I was no longer in a position to make my own decisions. I was a danger to myself.

I was shocked at how quickly the "Hackney Holiday Home" became a horror home, but before that transformation begun I had momentary respite. It was the deepest peace I have ever felt. When I first arrived I was given an hour or two alone in my room with my husband and my son. Once again I made sure they were both comfortable and sleeping and took several photos to document that my boys were doing well, and then frantically reached out to the real world. I sent messages to my loved ones like a thing possessed, desperately wanting to leave a trail; messages that could trace people back to this moment where I was still alive: where "I" still existed. I sent out messages to the only people in the world that knew what was happening:

"I am safe. We are in our room at the "Hackney Holiday Home" I don't know where that is exactly, you can imagine, I've had a pretty tough week (to put it mildly). There is lots of lovely rest and recovery going on here. My boys are both sleeping. I want you all to know that I love you & I need each & every one of you that knows. There are 10 of us in the world, apart from all the incredible NHS staff, that helped me walk through hell to freedom"

There was a tranquility, a peace, and a clarity that I experienced in the silence of those couple of hours. I remember sitting on the big red chair in my room, feeling like Alice after she'd swallowed a "drink me" bottle. I felt so small and yet so safe. I had made it here. It had taken almost everything I had, but I'd done it. My heart swelled with a powerful understanding of what it was to be alive; to be a woman, a wife, a mother. 

Not only was I those, I was my husband, I was my son, I was all of creation. I was everything and nothing. I felt utterly insignificant and truly vital simultaneously. My identity had been shaken so deeply that I didn't know what "I" even meant. Was it me doing and saying these ridiculous and profound things? What was "me"? I couldn't take anything for granted any more. It was a moment to moment existence. I was surviving. Just.

It's easy to have the illusion at this point that I was a woman capable of understanding and communication. The reality was that I had, by this stage, virtually lost my ability to speak; my throat was scratched red raw, my speech was so pressured and full of Tourette's that getting through a sentence was agony. I had developed an intricate sign language in the vain attempt to keep myself calm, to reduce the terrifying stress and physical exhaustion my spasms would induce. These spasms would surge through my body if anyone said the wrong thing, and by this stage people only knew what the "wrong" thing was after it was said. 

After my sacred couple of hours left to myself in my room, two doctors came in to talk to me and assess my situation. Needless to say my "situation" was painfully clear, as 15 minutes later I was chasing them out of my room screaming at them to leave me alone. As I charged out of my room, running after these doctors four or five nurses all leapt in on me. I was being restrained. 

I was a mad woman.

I knew from this moment that there were very real consequences to my actions. I was involved in a very very serious business. All I felt was that no-one was listening to me. That feeling of being restrained is one that shocked me to my core. This was me. I didn't do things like this. But I did. I was. I was doing them. This is me. This is my reality. I am the me I'd never met. The me I didn't expect to ever meet.

Things went downhill. Fast. I almost can't bring myself to share what it was like to go through that next 72 hours. I did things that I'm ashamed of. No matter how many times people tell me that it was the illness and not me, I can't and may never accept that. I know it on an intellectual level, but it is very complex to disentangle yourself from your behaviours in psychosis because they come through you, and you are used as the messenger for its powerful and twisted message. One nurse said to me, "Think about whether you want to do that, think about when you have recovered." That was the most helpful and hardest thing I heard in those turbulent hours. It knifed me to know that I was ill, dangerously ill, but it soothed my soul to hear that word...recovery. It echoed around the vacant corners of my sanity and rested deep in my heart. I was ill. I would get better. I would recover.

But this was just day one.

Love and Fuck off Tourettes,
Mutha Courage x