Lived Experience Forum

[Queenie]

Hi All, I'm still in hospital for treatment of depression and schizophrenia. My voices are running rampant at the moment and while I'm prescribed extra prn medication if I need it, it plays havoc with my body in that I get mouth and shoulder twitches from the antipsychotics I'm given. I can take a medication to counteract this, but if I do I cannot see well at all (everything goes blurry). 

I feel torn then between having terrible malevolent voices or not being able to see (which means I can't use my laptop or phone and cannot read books). Some days I just lie in bed and give in to not being visually able, other days (like today) I really want to be able to interact fully with my world and that means being able to see. 

It sucks major, but the reason for this post is to find out what others would choose... hallucinations or blindness?

[Queenie]

Hi again folks!

I decided that being able to see is better than the twitches and mouth movements for now at least, although my doctor has warned me that I must do something about it sooner rather than later, as the condition can become permanent otherwise.

I'm still in hospital but things are beginning to look up. I've had a medication change which seems to be going okay for now. My doctor is reluctant to change meds sometimes because I've been on a myriad of them and we are fast running out of options for treatment. I'm going to the recovery focussed group therapy session shortly wihch is about tricks to recovery (which should be really good I hope). 

Anyhoo that's me for now, take care All.

[utopia]

@Queenie. When you say between the twitches and blindness - do you mean permanent blindness - or temporary while your body adjusts?

[Queenie]

@utopia It is supposed to be temporary blindness but I've found as long as I take this medication, I cannot see. Even when I stop taking it, it takes about a week before I can use a computer or read a book again. It is very frustrating. 

[utopia]

Wow. That is a hard decision to make. Must be very frustrating when that is the option you are given. I hope they can come up with something a bit safer

[EndOppression]

Hi Queenie, I wonder if you have looked into the hearing voices movement? Psychologist Eleanor Longden has a great TED talk about how she listens to and understands her voices (not as truths but as attempts by parts of her self to communicate pain) and has used them to help her heal. Talking with the voices has worked for lots of voice hearers, including myself.

I listen now and try to understand- if they are terrifying it is becuse they are terrified, and I can talk back to them and be kind and caring and tell them we are safe. It hasn't fixed everything (yet!) but it really has helped. They are a part of me- ignoring them or medicating them only makes them scareder and more suicidal for me. This might not be the case for you at all, I just wanted to say there are other approaches than drugs available.

[Queenie]

I'm a member of intervoice @EndOppression and am very familar with Eleanor's work. Before this episode, I was only on a small dose of antipsychotics and was co-facilitating hearing voices groups in my local area. But for some reason, my psychiatrist fiddled with my meds and caused all sorts of havoc and really stirred up my voices. I know I'll get back on the horse though and go back to where I was. I don't know that I'll ever be completely medication free, but I'd like to be on a minimal dose. 

Have you heard Peter Bullimore speak at all? He's pretty awesome too in the hearing voices network.