[Caroline]

When I first started taking antipsychotic medication many years ago, it was a horrible experience. I was experiencing a side effect, which I will detail below, but I had to find out what I was experiencing by myself. I give thanks to the power of the internet and insightful articles.

I cannot recall how I happened to come across the article, but the awful side effects I was experiencing is called ‘akathisia’. What a side effect it is. I’m going to describe it, but even my description cannot fully reveal the beastly events that occurred when I was taking the antipsychotic medication. Note I’m still taking them (a depot injection (because I was non-compliant) called ‘Clopixol’). I would experience it when taking Risperidone, Aripiprazole, Amisulpiride and Quetiapine (I felt high when I took that drug!).

I used to be on 50mg of Amisulpiride (the drug that I chose to be on because the Psychiatrist trusted my judgement having just studied Pharmacy) for a long time, but a new Psychiatrist queried this and upped the dose from 50mg to 400mg. Akathisia didn’t come about at 200mg (half the recommended dose) thankfully, but let me get to the description!

So, I would feel a feeling of tiredness, overwhelming tiredness where I just had to lie down. I’d walk to my bed, lift up the covers ready to jump in. I’d cover myself, lie on my side with my laptop in front of me. I didn’t want to sleep, just to lie down, you know, get some rest. I’d browse the web, looking for things to watch, or things to read, hopefully my body would appreciate the comfort but then I’d suddenly feel a feeling of restlessness. A feeling that I had to get up, a feeling that I had to do something, anything. So I’d get up. I’d move around, perhaps get something to eat, go and grab my laptop and proceed to living room to sit on the sofa with the laptop and continue what I was doing. Soon enough sitting up became a chore, I became tired again.

I need to go and lie down, I’d think, so I did. Off to bed again. Tucking myself in again. A sense of relief as last time again. But this wouldn’t last long.

I need to move, I can’t lie here like this. But soon enough I realised this vicious cycle of tiredness and restlessness would not stop and there was no relief. All caused by medication? It just wasn’t worth it. But alas it wasn’t like I could just stop taking it and the effects would go away, no, I’d already taken the medication, and this effect wasn’t going to go away anytime soon. What a life! I couldn’t even sleep through it, for I would become agitated and just want to move. I couldn’t go for a walk as I’d just feel lethargic.

Akathisia is her name and she is no joke. Can anyone else relate? Perhaps you are experiencing this but just don’t know its name. Hopefully, I’ve given you some insight and you can talk to your Psychiatrist about it. Let me know below.

[Caroline]

I must admit, when I was in University, I felt that I wouldn’t be here by the age of 25 years old. Almost ten years later, I’m still here… living, or trying to.

Do I hold thoughts of positivity? Well, I try to, but it’s only short-term positivity. I cannot bear to plan for the long-term, because deep down, I feel like life’s a party and as a true introvert, I want to leave. So thinking about the far future is daunting for me. It’s terrifying actually. I guess in this way, I do live a life of just surviving but not so much based on negativity (I guess you would think that wanting to die is negative, but for me, it’s like a sense of freedom and release). Other than that, I don’t dwell on negativities, I don’t self-deprecate, I try to be content at all times.

I feel like what would make a big change would be if I fell in love with the man of my dreams. I think about him often. I have dreams about him, and when I do, I wake up feeling so content, so at peace. It doesn’t even bother me that’s it’s not a reality, I’m just glad he ‘came to visit’ you know?

[Caroline]

My issues began at University. You could say it began when I started talking, or not talking I should say. I’ve always been extremely shy. As a child, I’m certain that I had selective mutism. This is where you speak fine around familiar people or certain people in general, but around others, you are completely silent, or ‘mute’. This was me. I’d be this way around relatives. My parents would be so embarrassed and ashamed of me and would berate me in the car home all the time.

“Why can’t I speak?” I’d think to myself, always perceiving myself as useless and good-for-nothing. In college, things weren’t too bad actually. I had one close friend and another girl (her friend that I called my friend) who I would hang with. Actually, there was another guy who I was relatively close to also. But in University, this all went away. Five hours away from home (Manchester as opposed to London). I had no one. I made no real friends (I had one friend, but she wasn’t my typical friend, she was very prude which is fine if you have several friends to balance that out if you know what I mean. I don’t want to downplay our friendship, but she just wasn’t my typical friend).

I would miss lectures (I probably went to 20% of lectures or less), I would just spend the day sleeping or trying to amuse myself by watching Youtube videos. I was severely depressed and I didn’t even know it. Now, I studied Pharmacy, so I knew the symptoms, so imagine not knowing. Maybe because I couldn’t cry. I would read the symptoms and be like, ‘yep’, ‘yep’, ‘yep, so I knew, but it’s like I also didn’t know. Was it denial?

I’m going to write a story about this because this is going to be too long to post here. Long story short, by year three, I developed psychosis. I wasn’t going out, I wasn’t communicating with people so I just lost touch with reality and who I was.

So my symptoms are really from me feeling a sense of emptiness and worthlessness. It’s from me being unable to express myself and be myself around others. I know I have a lot to offer, but just don’t show it, because I literally can’t due to my shyness and introverted nature. It’s not a case of ‘let’s get rid of the ”symptoms’, it’s a case of, let’s build your ability to express yourself and feel free around others. It’s about allowing me to feel ok with not having many friends, this isn’t my life path to have lots of friends. It’s about me excepting myself for who I am. Let me tell you I am so much closer to that than ever before, still far off, but a lot closer.

[Caroline]

I was initially diagnosed with ‘Brief Psychotic Disorder’ in 2009, however, after three hospitalisations by 2012, I guess it became clear to the Psychiatrists that I may have something more.

My psychotic experiences are always brief, lasting just a few days, and usually being hospitalised for two weeks to one month, if it’s longer, it’s usually because they are sorting things out for my release, e.g. making sure I’m monitored in the community upon my release.

I found out about my diagnosis by accident actually. I saw it written on the Psychiatrists screen and I said, “I’ve been diagnosed with Schizophrenia?” She replied yes. My sense of self was high around that time. I had just been released from the hospital and was still on a ‘high’ so to me, it didn’t bother me at all. I didn’t feel worthless, or less than. I felt no feelings towards the diagnosis whatsoever. Even after a few months, I was fine with it. I told my friends and family with no issues,

“Oh you know I’ve been diagnosed with schizophrenia?” I told them.

I didn’t care what they’d think. You may say this was because they were friends and family, but actually, I even told strangers that I came into contact with, even people I had just met on dating websites. I know that sounds odd. We’d talk and I’d let them know.

I must say I’m happy that I know that my diagnosis doesn’t define me. I’d love to hear stories from others where this is not the case. Let me know.