Sunday, 21 October 2012

Life "after" schizophrenia

As schizophrenia is for life, it's not really possible to have life after schizophrenia. Unless you're one of the lucky ones who gets a psychiatrist to admit to a wrong diagnosis that is! So that's the reason for the inverted commas around after in the title. What it really means is life after a psychotic episode but as that was too long for a catchy title I decided against it.

Moving on...

The main symptom of schizophrenia that I suffered from was auditory hallucinations (voices). I may joke about voices nowadays, 'You're never alone with schizophrenia' but I guess that those sorts of jokes hide the true feelings that go along with voices. If voices are constant then it is true, you are never alone. It is highly frustrating to hear voices constantly and voices aren't like people, you can run and hide from people but you can't run and hide from voices!

So now the voices have stopped, I can "hear" silence again. Don't get me wrong, at first I loved hearing silence and gentle sounds. Hearing birds tweeting on a tree outside my hospital window for the first time was almost magical. But then came the loneliness.

My dominant voice was nasty. Really nasty. Everything I did was either criticised or not good enough. The times I self harmed to shut him up would usually be followed by him telling me there wasn't enough blood, I hadn't cut deep enough or burned myself enough. The time I bled for 2 hours nonstop was laughed at, it may have been good enough for the voice for once, but after that he expected me to cut that deep every time.

Yet a matter of days after that voice stopped for the final time (around June/July last year) I started missing him. I didn't miss the horrible things he said to me but I missed his "company". Despite living with my parents, I wasn't around them 24/7 and nighttimes were particularly difficult for me. I have always liked my alone time away from everyone yet now when I have alone time, it is too quiet for me. At night, I have a sound machine playing throughout the night so I don't have to listen to the silence.

Silence isn't silent anymore. When I can't hear anything, my ears feel strange and an indescribable noise starts screaming in my ears. The longer I listen to silence, the louder this noise becomes and it can become almost painful. If I am ever somewhere too quiet, I start whistling subconsciously, the whistling is very quiet but it is enough to stop my ears from hurting. I know whistling is annoying to people and it can be embarrassing when I do it in public. Particularly if the song I'm whistling is an embarrassing teenybopper song, One Direction or Justin Beiber for example!

Something else to live with after psychosis is the side effects of the medications. Some people (a majority) stay on meds for years, decades or even the rest of their life. Some choose to do this, others are forced into long term drug use and are threatened with sectioning if they come off them. I'm one of the lucky few who is off anti-psychotics and I'm very nearly off my anti-depressant. The only psych med I take now is 50mg of Sertraline which is quite a low dose. I was on the max dose of 200mg for a few years and am grateful to not have as much of a chemical high as I used to have.

As well as the Sertraline, I also take two other meds to help with the long term side effects of APs. I have been on Lansoprazole and Loperamide for a year now, they help with stomach problems and IBS respectively. I have been offered meds to help with akathisia (painful restlessness) recently but have turned them down. The meds I was offered can't be taken at night when akathisia is at its worst and I'd rather have a steady level of akathisia that I can cope with 24/7 than no akathisia in the day and what feels like awful akathisia at night.

So instead of taking tablets for akathisia (which could make things worse) I instead move my legs all day and sometimes move them throughout the night too. Again, this can be annoying to others sitting nearby and I have been glared at a few times in GPs waiting rooms because of bouncing my legs. I must admit, I have been tempted to answer the glares with a comment like "It's because I'm a schizo" but I have managed to stop myself in time!

These are the things that psychiatrists don't normally see. They usually see schizophrenics at their worst, when they're psychotic. They don't see long term medication damage or loneliness from hallucinations and delusions stopping and frankly I don't think a lot of them care. They only want us out of hospital and preferably off their books so if we're good patients (sorry, Service Users) and stay well, they're happy. They certainly don't want to dig deeper and find out any more problems that we may have!

I know, I'm a cynic. But I've met or heard from very few people who have been in the 'system' and aren't cynical. Unless that's just because we're nutters! However, being schizophrenic has its occasional uses. My 'crazy eyes' are great for getting rid of annoying people and my certificate of insanity can scare off potential bullies in a heartbeat!



  1. You are so young still that your experiences will in time form just a small part of your life. I am sure you will stay well now - you are doing so brilliantly. I hope you are still enjoying your creative writing classes - and sorry to hear about your dog - that must be really tough.

    1. Thank you, I'm hoping to stay well too! I'm slowly getting over my dogs death, but still miss her a lot. Creative writing course still going well, have given my tutor a few of my blog posts used by charities after revealing my diagnosis to the class last week! It was sort of liberating to reveal it but the class is very small (5 plus tutor!) so it wasn't too scary! Plus everyone there is so nice that I soon felt comfortable there. My mum comes along as my social anxiety is still a struggle though.

      Hopefully in a few years time I'll be writing professionally and earning enough to get off benefits! But there's a long way to go until I get there!