Friends, Family & Carers Forum

[Zam]

hi @CherryBomb, thank you. if me talking about my experiences helps anyone in any way, it makes it all worth while 🙂

to answer your question, nah it wasnt scary at all. Its hard to explain, i mean you think if you started hearing random things in your head that you would know that something is seriously wrong but when it was just starting, it was just hearing slight whispers. couldnt make out what was being said and was really easy to ignore.

As bit of time went on the voices got louder and it started as one voice and at its worst i was hearing 6 frequent voices. They even had names and hearing all those voices kind of wiped out my own thoughts since i couldnt hear my own thoughts over those voices. They started out really friendly, like saying i can do anything and just like really good things that gave me a ton of confidence.

That didnt last very long and it all started getting really negative where they were freindly but it all changed to like the point of constantly hearing to end my own life..

the voices as annoying as they were/are are nothing comparend to dealing with the visual hallucinations. Some of those were terrifying..

but yeah it never started like a full on episode to begin with. It was slowly building up to the point of a full blown episode that took a couple months to get to that point and never did i think anything was amiss or that i was sick or anything like that, i guess its hard to explain on that but yeah i guess my brain wasnt working normally so it made it that i just couldnt register that anything was wrong with me or that i was sick

[Spookytookims]

@ZamWhat you are saying seems so surreal.  On the surface it appears your brain or perception created its own narrative in a way to make it all plausible.  Would that kind of describe how it unfolded?   Did the hallucinations relate to the voices or were the two totally independent and separate of each other?

Do you have any personal insights into what you think happened and why or do you leave all that to the professionals?

You seem above average in self awareness, were you like that before your experiences or have you become like that because of them?

OMG I just asked you so many  questions they just fell out.  I'm sorry.  I realise this is your personal story and it seems somewhat intrusive to be asking you all these things.  I want to say again please don't answer anything you feel uncomfortable with. I get the feeling you wouldn't anyhow.

I have an annoyingly enquiring mind so opening yourself to allow someone like me questions, could quite understandably lead to you regretting  the invitation. 

I have so much respect for you, and your generosity I don't want to be taking advantage of it.  I have wondered about these things I am asking for a long time for a reason.

I had a friend who was schizophrenic, years ago.  Unfortunately he lacked the ability to understand himself and I watched him, no... those aren't the right words. More he was not in a position where he could help himself, and it just ripped my heart to pieces wishing I could do something to help him.

I am so glad you have reached this point and I cannot even begin to imagine what it might have taken to reach it. Thank you for your replies I could hug you for them. (Don't worry, I'm not a huggy person so you are safe 🙂 )

Spooky

[Grasshopper3]

Hi @Zam,,
Are you on medication for sz now?
Are you aware your thoughts can be different from other people? Even if you're on meds, do you still have same thoughts, but motivation has gone? How do you deal with sleepless nights and sleeping during the day pls?
Do you have a 'carer? Someone who helps you supplying shelter clothes food etc?

If you take meds, why? If your answer is yes, I hope you're answer is you trust the medical 'professionals' in helping you.

I hope so much you have found your place on this earth and feel good about yourself.
Sam, you are a real gem, you can help carers by giving us an insight of how you have struggled and now taking up such an important supportive roll in society.
Thank you.

[Zam]

@Spookytookims yeah i guess it does seem pretty surreal in a way. the brain is a powerful thing..

thats a good way of describing it how you did. I look at it as my brain created its own reality, and now since i know a lot about the illness due to studying it, my brain created its own reality due to a chemical imbalance.

Umm sometimes the voices would talk about the things i seen but apart from that they were two seperate things. i could hear the things i was seeing though but it was like having someone next to you talking. it wasnt noises in my head.

the schizophrenia started when my fiance at the time was pregnant. well it started with paranoia and voices kind of fed onto that (thought fiance's parents were trying to kidnap my son, even before he was born). And it was at its worst when going through family court. The pshyciatrist i see often basically somes it up to full blown stress.

thankyou. the medication im on works pretty well so that even though i experience some things still, i know they are not real.. Off medication, i was never this self aware on it. it took a long time plus lots of different medication to get the one that works the best for me with little to no side effects.

no need to be sorry 🙂

i promise im comfortable answering anything really. its not really a big deal opening up about it anymore. you can ask as much as you want.

sorry to hear about your friend. i hope your friend is doing well now. yeah seems to be a pattern that many people with schizophrenia dont like opening up about it and i completely understand that. but also if no one did open up about it, how could anyone truly learn about it from a first hand perspective? people in the mental health field seem to like telling us how we feel and what its like to go through it but they really have no idea and some of them are very obvious with that and you can see it with how you are treated.

more then welcome for the replies. i hope you are doing well yourself.

btw im a huggy person myself haha

[Zam]

hi @Grasshopper3

i am on medication

im very aware my thoughts are not normal compared to others without this illness. Medication makes me pretty self aware about it, and lots of therapy.

i still hear voices while on medication but they are not as loud and i can ignore them a bit and not believe everything they say anymore, so yep same thoughts are still there while on meds but im more aware to it not being real. And i have no energy and its hard to be motivated to do anything a lot of the time, but for me i have a good reason to do everything despite having no will to do everything.

Off meds, i wasnt really sleeping at all. i would just walk around the house all night and day trying to block everything out. that normally went on till i would basically pass out from exhaustion.. I also would take sleeping pills a lot but now i am pretty much banned from using them since i abused it really bad.

On meds, the sleepless nights are not as bad, i still have insomnia but these days i am so busy that i can distract myself and i try to relax a lot before trying to sleep. the insomnia is one of the worst seide effects.

I dont have a carer. I am very stubben and dont like getting help and feeling like i cant look after myself. going out is incredibly hard at times to do simple things like shopping for food and so on but i always force myself to do it.

i take meds because i cant function properly without them. I trust very few health professionals. some are great and others seem clueless.

i went on and off meds for a very long time and it would have continued if i didnt decide to take a chance  myself and stau on a medication long enough to see if it works.

Thank you, i am in a very good place these days and i think i have worked extremly hard to get to this point in my life. lol if you cant tell, im not so humble about that but yeah only cause im proud of myself for it.

[Spookytookims]

Thanks so much @Zam.  I can only imagine and 'm sure in that, not very well, what it has taken you to reach this point, but I can so totally relate to you being proud of that achievement.

I too have overcome my own mental trauma and although I have probably achieved many things others would consider notable.. to me those were nothing but part of living life.    The one real thing I do feel proud of is achieving is my "recovery" (at least to my satisfaction).  Only I know what that took. So yes, I can imagine to a very small degree what you have felt achieving your "stability" but only you know how much determination and pushing through unseen barriers that took. 🙂

I am so very proud for you, even though I don't know you at all I think it is amazing. Definitely worthy of a book that would interest quite a few people.  Congratulations for all your achievements, every little one every big one, because all of them banded together to get you here.

Thank you for the privilege to talk to you.

[Former-Member]

Hello @Zam

Thank you for explaining the effect of hearing voices and hallucinations.

You have put into perspective the insomnia, lack of motivation, energy loss and body clock effects on day to day living.

This is a very difficult concept for many carers and I know that my son did this even though he did not live with me as an adult. I witnessed the state of him and his room during visits. I would insist on him showering and changing before we went out anywhere. He didn't object. There are ways of subtly letting people know.

He was described as being lazy, negative, ignoring daily hygiene and lived in a build up of mess in his room.  I used to think that perhaps it was clinical depression as I have this condition.

I keep reminding myself and his brother that the illness creates this total disruption to his life.

Do you find that your environment helps? as in surrounded by nature calms you?

when i brought this subject up during my last telephone call with my son I noticed a significant change in his tone. It was almost like talking to my son again. His voice had softened and he was clamer.I believe very strongly that nature is calming on the soul.

You have every right to be proud as I said before you are an ambassador and will help many.

Please remember to look after you though.

[Queenie]

Hi @Zam, I rarely come into the Carer's forum, as I am most active in the lived experience forum, however a few people have suggested I check out your thread. I live with schizoaffective disorder (for me it is like having schizophrenia and bipolar disorder at the same time). 

At the moment my hallucinations are sparking up a bit due to stress. My 'voices' never give me much relief for long. They are also never positive, telling me to harm myself or harm others mostly. I also live with delusions that the government is performing experiments on me and have been doing so since I was a child. I find 'evidence' of these 'experiments' in everyday objects like car number plates and road signs. For this reason I do not drive (as I find them very distracting). 

I find I have to keep referring back to CBT principles in order to 'unhook' myself from delusionary thinking and at the moment that is what I am struggling with. I have therapy once a month with a clinical psychologist to 'reinforce' these learned CBT techniques.

[Zam]

Hi @Former-Member 

you are most welcome. 

I hope your son is doing ok. Yeah the stigma that comes with mental illness kinda sucks. People assume you are lazy, negative and don't care about hygiene. But it's symptoms of a illness.

most cases with mental illness you only hear mostly about certain symptoms like for example voices with schizophrenia. The other symptoms like lack of motivation and so on are hardly talked about, so people just assume things like as you mentioned lazy and so on.

i think your son is lucky to have you 🙂

to answer your question, being in nature can sometimes relax me. It never did when I wasn't on medication because I was constantly seeing and hearing odd things with trees.

i do have my own few things I do that relaxes me, for example painting, reading, video games, exercise.. Just anything really that distracts my mind in something fully.

thats great that nature calms your son down. It's truly great to find some things that can do that for you.

thank you again for the kind words

[Zam]

Most welcome @Spookytookims

@congratulations on overcoming your own mental trauma. Truly a hard thing to accomplish especially when you are basically fighting against your own brain and overcoming such difficulties that others are lucky enough to never know how truly horrible and hard it is to fight such things. You are amazing.

thankyou, I don't know if I'm worthy of a book or have the patience to write one haha. There are some pretty amazing books on others experiences with mental illness though. I have so many autobiographies on others struggles with mental illness and well worth the read. 

I don't feel I could come close to writing as good as those people. Plus reading others books, I feel very fortunate that I never had things as hard as they did. Thank you though, means a lot