This Is What Developing Acute Schizophrenia Feels Like
A year ago this winter I began to not recognise myself.
The brain, showing the cerebral cortex. Photo via Wellcome Images
The brain, showing the cerebral cortex. (Photo via Wellcome Images)
A year ago this winter I began to not recognise myself.
Sleep was the first thing to change. Progressively, over the course of about a fortnight, I began struggling to drift off. As a 24-year-old man with a good supply of hash, this had never been a problem before. It was so odd. Seemingly out of the blue, I’d get into bed at night and just not be able to shut off my brain. Thoughts would grow tendrils and loop onto other thoughts, all tangling together like a big wall of ivy. Some nights, I’d pull the duvet over my head, grab my face hard in my hands and whisper to myself, “Shut. The. Fuck. Up.”
Eventually I would be able to get to sleep, but I’d wake up feeling peculiar, like I had forgotten to do or tell someone something. Hunger wasn’t as aggressive as it usually was during this time, either. Normally I bolt downstairs to pour a geodesic dome-like bowl of Frosties the second my eyes open. Instead, I woke each morning with a sicky, creeping feeling in my gut. Still, I carried on as normal, thinking I’d just lay off the hash for a bit. That was probably it. I wasn’t panicked.
I carried on going to work (I work at a local wine merchants) and tried to put what was happening during the night to the back of my mind. I got through the days OK, if slightly bleary-eyed, but looking back now I can see that I had started to struggle with simple conversations.
If my boss told me to check a delivery, it’d take me a few seconds to process what he was saying, like two or three people had said it at the same time and I couldn’t make out the clear instruction. Looking at morning delivery slips and trying to make sense of them in my head was like trying to make out a tree in the fog – possible, but hard.
Everything felt misty. I’d started to think that stuff was about to fall over all the time – I’d look at a shelf of bottles and see one or two about to topple over, then look again and they’d be fine. I also kept thinking I could hear phones ringing, at all different pitches, even though there were no phones in the warehouse. Again, I wasn’t panicking yet – I just told everyone who asked if I was OK that I wasn’t sleeping well and thought it was all down to that. Sleep deprivation does weird things to people. A lad at work gave me some of these American sleeping pills to try out, and they seemed to help for a bit, even though I’d wake up and feel like my head was full of cotton wool. I stopped caring about going to the pub or playing football at the weekends. All I wanted to do was sleep. Conversations were too much hard work.
I’d say it probably took two months from that initial sleeplessness for me to actually think there was something seriously wrong with me. The thought octopuses, as I ended up calling them, got weirder and weirder at night. I’d have the telly on and start being unable to identify what was noise coming from the screen and what was my own noise. It was frightening. One night, while watching Homeland (of all the programmes), I had what I thought at the time was a panic attack. I knew what a panic attack was because one of the girls I used to go out with had them – she once had to lie down in the cinema and do deep breathing to stop herself retching. It was horrible to watch. That night in bed, though, I started trembling like it was freezing cold – only, my skin was boiling. My legs shook against the bed sheets and there was this cacophony in my head, like a crowd of people were chatting beside my pillow. Nothing dramatic, just a steady, confusing noise. By the flickering light of the TV, I began to lose my mind.
I didn’t sleep at all that night. I felt paralysed. My bedroom door had become the very end of my world, like the paper set Jim Carrey rows into in the final scene of The Truman Show. The noise came and went in waves, but it felt like someone, or something, had replaced my body and mind. It wasn’t me who was too scared to go to the bathroom for a piss, so decided to do it in a glass tumbler, spilling it all over the floor. It wasn’t me who threw all my bed sheets off, only feeling comfortable completely naked against the bare mattress. It wasn’t me who pressed the tip of a Stanley knife into my heel to try and snap myself out of the despair. In that room, as the sun came up and my alarm went off for work, I thought, 'I need my mum.'
Luckily, she was only a staircase away. I hadn’t got myself together to move out of home yet – couldn’t afford to, really. I called her from my phone because I thought that if I left my bedroom my insides were going to fall out. I genuinely believed crossing the threshold of my bedroom doorframe into the hallway would make my skull come apart and my bowels fall out of me like a bucket of pig swill. She answered the phone and said, “Oh for goodness sake, Daniel*, stop messing about,” or something similar. I started crying, apparently in big, whooping sobs like a little boy, and heard her throwing her phone on the floor through the ceiling.
When she opened my door, she gasped. I don’t remember doing it, but apparently I’d pulled apart my TV remotes (I had, like, four of them) and my bare mattress was covered in little circuit boards, piss and blood (from my heel). I sat there in my pants, crying, and told her that I'd been “taken over”. She called an ambulance.
Again, I don’t really remember this properly, but apparently when the ambulance men arrived I thought they were both taking pictures of me. I got really angry and tried to punch them. I screamed at one of them, telling him it was against the law to take my photo and that I had rights, all while sat in a pair of soaking wet boxer shorts with flaked blood all over my leg.
All I remember from the drive to the hospital is my mum holding my legs down against the bed, but she says I was screaming that I didn’t want to be driven on the motorway because there were people crouched inside the speed cameras. My memories of the A&E department that night are colourless flashes of needles, soft voices and arm restraints.
An image showing brain areas more active in controls than in schizophrenia patients during a working memory task (Photo via)
All the above is what’s called a psychotic episode, and is emblematic of acute schizophrenia – the illness I was diagnosed with. Psychosis is defined as someone having a loss of contact with reality. It can happen quickly, or – most commonly in those who develop schizophrenia – can be a slow-burner and then suddenly snap. That’s what happened to me. I was hospitalised for about a week and a half and started on a course of antipsychotic medication immediately. I don’t remember much of this time, either, only that I felt sick a lot and found it hard to talk to anyone. Oh, and that the guy in the room next to me constantly shat himself on purpose. The smell was like the death I felt in my brain.
I remember the day I started to feel like I’d clicked back into reality, when the new chemicals I was taking found their footing in my body and didn’t just make me want to cover my head in blankets and sleep. My brother came in to see me with my mum (they’d been coming in every day but mostly just talked to the doctors and nurses – I was incapable of conversation) and we watched three episodes of Breaking Bad in a row on the iPad in the visitor’s lounge. My mum held it against her knees with one hand, while occasionally stroking the back of my neck with the other. I laughed at something Saul said and felt like I might be getting somewhere, like the curtains that had been drawn on who I once was were starting to flicker. I even ate a full meal that evening, and I'll now never take mashed potato for granted again.
The road to recovery was filled with potholes. Namely, debilitating panic attacks when I had flashes of what had happened weeks previous. But the mental health team at my local NHS hospital were amazing – save a couple of nurses who treated me like a baby. I hated that. Once I was allowed home I had a social worker come and see me every week, who checked on the medication, asked about what I was doing each day and encouraged me to go for walks with my mum and start talking to my mates again – I'd been too embarrassed to, and thought they wouldn’t understand. Or, worse, just write me off as a nutter. I couldn’t have been more wrong.
My best mate, Sam*, said he’d been so worried about me that he actually hadn’t been sleeping at night. Stupid bastard. One by one they all started texting me again – I think they'd been frightened of saying the wrong thing, mostly – and said they couldn’t wait to start playing footie again, that I’d be back on my skinny legs in no time. It was amazing how mature they all seemed.
The mental health unit arranged a course of outpatient therapy with a straight-talking man called Gregg*. The antipsychotics were really sedating for a while, and I often felt like I was wading through treacle, but there was a strange calm in my brain that I’d not felt for months and months. Gregg helped make sense of what had happened to me, teaching me techniques for when panicked thoughts came into my brain about that night when I snapped (he says it’s unhelpful to talk about “losing” your mind – the mind is still there, it just got ill) and how to not live in fear of it happening again. He encouraged me to start seeing my friends again and told me about how the mind doesn’t stay the same, how it’s possible for it to recover and that the medication had worked so would continue to work, but that I had to be realistic with myself and accept that I had become ill. All I needed was time.
Accepting it was the biggest thing, actually. Frustration is, as I’ve learned, too close to anxiety. On the days when I’d go out for a walk (my mum made me go every afternoon for at least an hour, leaving me on my own halfway through and giving me a task, like buying a pint of milk or some butter) and start thinking about everything, thoughts would flash into my brain: 'For fuck’s sake, why can’t you just be normal?' I had to stop, inhale a few times and say to myself out loud, "I am normal; I just got ill and am having a break."
"I'M REALISTIC ABOUT MY PROGNOSIS: I MIGHT HAVE A RELAPSE, BUT NOW I KNOW I CAN RECOVER IT'S LESS SCARY"
Within about six weeks of leaving hospital, I started going round to friends’ houses again. I always felt a little twinge of discomfort when the TV was too loud, or when everyone talked at once, but I just told them when I felt strange. No one took the piss. No one pitied me, either, which was amazing. I feel like if one of them had got ill like I had, I’d be like an overbearing mum, constantly asking if they were alright.
Within ten weeks I was back at work part-time. My boss couldn’t have been more sympathetic. Apparently when I went into hospital he called my mum to let me know that the job was waiting for me as soon as I felt well enough, and that I could take it at my own pace. Initially this made me angry – I didn’t want to go back as some sort of invalid. I was 25 (I celebrated my birthday in a medicated fog watching Friends omnibuses), not 60, and wanted to be thought of as the same guy when I returned. It took me a while to accept people’s sympathy and care for what it was, not as a slight on me as a person.
Going back to work was the best thing for me. Having a routine, people to talk to and tangible tasks to complete was very medicinal. I had days when I’d wake up and feel frightened, when it would take me a couple of hours to have a shower and leave the house, but nobody questioned me. I called Gregg a few times from the warehouse – being in the place where my reality had started to slip was, on occasions, pretty odd – and he wasn’t always available, but sometimes just leaving him a message was enough. Eventually, he said I didn’t need to come and see him any more – that he trusted me to work through the thoughts and techniques on my own.
It’s a year on now and I’ve not relapsed. I'll have to take this medication for a long time, I think, but I’m OK with that. I have precious little sex drive (even though I can still get it up) and have put on a bit of weight, but those are small prices to pay for clarity of mind.
I wanted to tell this story because, until I became schizophrenic, the word represented a death sentence in my mind. When you hear of people being schizophrenic, you imagine them locked in padded-walled rooms, rocking backwards and forwards into a two-dimensional future of heavily medicated conversations and drool-covered pillows. You imagine a future of hearing voices and seeing phantoms. This is far from the case if it's treated well. With the right treatment, and especially if it’s caught early, you can recover incredibly well from acute schizophrenia, as you can from other mental illnesses.
I'm realistic about my prognosis: I might have a relapse at some point in the future, and do sometimes feel depressed about that, but now I know that I can recover well, it’s less scary. I'm back at work, socialising, keeping fit and playing football like I was a year ago. I’ve even been on holiday. I’m not quite ready to move out of home yet, but that might be down to laziness more than anything.
My biggest piece of advice to anyone who starts to experience any psychological symptoms they’re not used to is to tell someone. Anyone. Make it a conversation rather than something you carry around yourself. Mental illness is no different from physical illness – it just involves a different organ: the brain. Don’t worry about asking for time off work, or about telling your boss that you’re feeling unwell, like I did. Looking back, hallucinating that invisible phones were ringing when I still had some grip on reality should have made me reach out to someone. Shame can play no part when it comes to looking after your mental wellbeing, and we should be as finely tuned to our mental symptoms as we are our physical ones. Being a master of disguise, like I was to even my own mum, is nothing to be proud of.
If you're feeling out of sorts, talk to your GP. Demand emergency appointments if you have to. Even if you think it sounds silly, or like something that will blow over, telling someone about how you’re feeling is the best thing you can do. I was dealt with as a psychiatric emergency, and as we all know, the NHS is astounding in an emergency. I don’t know what it’s like for others that don’t present like I did (I’ve read all sorts of horror stories about shoddy, delayed treatment online, and Nick Clegg’s new mental health initiative sounds like it couldn’t come sooner), but I do know that staying silent about feeling unwell is the worst thing you can do. People are always far more sympathetic than you think they’ll be.
It’s 2014; we need to stop treating mental illness as something taboo, something that will stain us forever. And that can only start with ourselves.
*Names have been changed
More stories about mental health: