Tightrope Act

[darkshine]

I feel like balancing my health/MH is like balancing on a tightrope, remaining balanced does not last for long, so I'm permanently either wobbling, falling or climbing back up...

 

There's a voice in my head, sometimes its very quiet and doesn't say much and other times it goes on and on at me. It's only my thoughts but its so direct that it feels like a voice and so forceful I feel like I hear it.

 

I'm trying in various ways to sort my life out from the mess it is, and has been, and then along comes this voice again (voice is for want of a better word) and it sits in my head telling me bad things about myself that make it really hard to stay on top of things - it starts up and I just want to slide to the floor and stay there forever and let it win - for it has been a battle - I don't know exactly when it started but I know when it was so bad it tortured me - I was 16 - this thing in my head has ripped my life apart at times.

 

Because of CBT 4/5 years ago and my meds, it's only there some of the time - I can go days with only a few mundane comments - whereas before CBT, it used to be a never ending running commentary all day every day which was exhausting and drove me nuts and if I stop one of my tablets it comes back more often too...

 

From midnight until around 4:30 this morning it repeated the same thing over and over (which is the last critical comment I heard) and it wouldn't stop and leave me alone.

 

I know I have to question it and challenge it but it has so many things as back up, whereas I don't. It's arguments are really good, while I don't really believe my own arguments. And I have no answer to being told I'm a freak because it's right - I am - or I wouldn't be arguing with my thoughts inside my head and I wouldn't be who I am and the way I am...

 

Today it has gone back to an infrequent whisper and I can side-track and distract myself away from it - but its the feeling that's horrible, like how you feel when you get really bad news, this terrible sinking feeling, like being drained, like being robbed of anything good, and it fills my chest and my heart and it pours through me like poison, like acid burning my veins, it makes my arms hurt and my head throb, and the the upper-side of my forearms is burning hot - there's a buzzing inside me that makes me want to just make a continual savage moan, and my hands tremble as I remain silent.

 

And this is only one thing that makes it hard to balance, but it is the thing I really dislike the most.

[RainbowsButterflies]

((Hugs))

[Pancakemaker]

Dark shine my son who's 17 had very negative thoughts and voices and lack of appetite,tiredness and anger,he was diagnosed as psychotic 3 months ago.he said the voices had always been there in his head but they got worse in the last 3 years and he only told me 3 months ago.he thought they'd section him and he wouldn't be able to see us anymore! Does any of what he has sound like what you've got to you? He's on risperidone now and is a lot better.x

[dekra]

Could also be "intrusive thoughts" coming from OCD? Not nice I know to have these things going around and around your head. Hopefully the lessons learnt in CBT are aiding you but maybe you should approach someone a GP maybe for referal?

[smiley1590]

i can totally relate to what you have so expressively described how you feel etc mine started at around 14-16ish and feel exactly the same i was put on risperdal (risperdone) didn't work for me! and i've had CBT after i was diagnosed soon after by clincial pyschologist at CAMHS who diagnosed me and i having CBT now by NAS pyschologist sometimes i stick on negative comment/critism that has been said and replays constantly around your head you have described it so well of how it actually is! just wanted say you ARE NOT ALONE! it is scary and you feel so out of control when it happens frightened .... feels like no-one truly understands what you trying so hard to put into words describe how it is!

 

i found so difficult but you;ve done so well in explaining the MH situation i think common MH feeling it is like anxiety/stress pyschosis as i hearing voices before felt suicidal depressed so easy slip down that route without really fully knowing how you got there or why! get so lost confused and frustrated! i would ring youngminds or your doc and explain are you seeing MH team/service?

 

XKLX

[smiley1590]

do you see a pyschtrist /pyschologist? what meds have you been on or are on? sounds like you need HELP! ASAP! hope you get it! as sounds URGENT desperate!

 

XKLX

[pinkdoll69]

Does sound like OCD to me and CBT could help.Using the services of a psychiatrist and a psychologist is very important.They are essential to your well being.

 

Good luck with it.

[darkshine]

Thank you to everyone who has replied.

 

This subject matter is very hard to talk about, its very difficult to explain...

 

I have written so many different answers already to this - to all of you - but I keep deleting them as I cannot find a balance between what I want to say and it not coming across wrong.

 

Maybe it would help if I first explained why I posted this in the first place? I have believed for a long time that if by sharing my experience someone feels they get some use from it then it's worth sharing it, I guess you never know if it helps someone...

 

I guess there are similarities between what I am describing and psychosis or certain types of schizophrenia, the voice has a persona and a mind of it's own sometimes, but I feel that this is coming from my sub-conscious - a lot of things it says are repetitions of things other people have said.

 

I haven't looked into OCD for many years and just looked - obviously more information has come to light since I last looked - and I can see similarities but there's no way I'm going to the docs and asking to be assessed for it - I'm waiting on a CBT assessment and had planned to bring this up if I am granted any CBT sessions, if it comes up as a result of the assessment then that's sort of ok, but I don't believe in putting ideas into people's heads, if it is OCD then they'll pick it up (not that anyone has so far...)

 

Does anyone get that thing where the last word someone said just auto-repeats? Well it's like that except it stores and saves all the bad stuff. There's this other thing - free association - it reminds me of that too...

 

For anyone who does find this concerning I would highly stress that I feel there is no urgency to seek help - of course I want help for it as I don't want to take meds forever - the one that 'controls' it (to an extent) is carbamazepine btw - but urgency is not important any more, mainly because I know it will go away when its bored or has achieved its goal of completely getting to me (which isn't hard).

 

I have already suffered though 14 years of this - and the first few years were absolutely brutal - I did so many bad things because of it and to try and shut it up - I'd get these "episodes" (if you like) where I couldn't remember what I did. God knows what the neighbours thought - was living in a flat - when they heard me shouting like the devil had possessed me (which was not the case) or when I was screaming and making indecipherable noises (this was during my alternate language phase - created using sounds and words that don't exist). I didn't look after myself, I didn't talk, I didn't even walk all that much cuz it was a bedsit and I never went out, and when I started wearing clothes a year later I got sores from the fabric.

 

For a very long time it felt like there were 3 other "things" living inside my head but it was only ever one that "spoke" - I've discussed this (in writing mainly as its impossible to verbalise all this) with at least 5 people in the mental health service I access - the psychologist (the CBT one years ago) he used to call it the bully (my name for it is different but similar) and I guess it is a bully in my head - because it does exactly what bullies do - it picks up on every little thing and undermines and cuts me down so ruthlessly.

 

These days it isn't that bad, I don't self-harm, I don't rip at myself with my fingernails, I don't sit head-butting or punching the wall (or punching myself), I don't scream hardly (maybe once or twice a year), I'm not suicidal but I do have suicidal thoughts (I see a difference).

 

It's just that its so horrible how it can completely destroy me, I can be doing ok and then bang, it comes back cuz someone says something and off it goes again. Sometimes I can just think "yeah, yeah, yeah" in a bored way and it gives up. But the other night I couldn't, I couldn't because it got me in an unexpected way, the comment was innocent (as they are half the time, just a passing remark, that person will have forgot it at soon as it was said, unfortunately I didn't).

 

I don't know if this makes more sense or not and believe it or not this is the very short version...

[darkshine]

Dark shine my son who's 17 had very negative thoughts and voices and lack of appetite,tiredness and anger,he was diagnosed as psychotic 3 months ago.he said the voices had always been there in his head but they got worse in the last 3 years and he only told me 3 months ago.he thought they'd section him and he wouldn't be able to see us anymore! Does any of what he has sound like what you've got to you? He's on risperidone now and is a lot better.x

Now that I have the luxury of hindsight I can understand my teen years and early twenties a lot better than I could at the time - although its still very limited and confusing even now...

 

At the time I didn't know what was happening to me, I felt psychotic and my behaviour was psychotic at times too. I used to go through stages of starving myself, used to go dizzy when standing or walking, and the anger was so destructive and scary - I have never felt anything so powerful and hateful than that anger.

 

At 17 I used to hang around 6th form waiting for my next class and I felt so alone - that voice, that bully, even though I hated it, it meant I wasn't completely alone - that evil voice has been my friend when nobody else was, it has even helped me before - like I wasn't strong enough so it stepped in (I'm sounding insane.... this is why I wasn't going to reply to anyone individually - but I figured you asked about it for a reason and I sort of can answer) .....

 

Anyway, looking back I tentatively believe that this was many factors all happening at once, looking back I think AS did not help in terms of my behaviour and thoughts and actions relating to the following factors as well; depression, being bullied and never fitting in, feeling the same way at home, not to mention numerous other things that I do not wish to discuss at this time...

 

The thing is - you say you hear voices - whether those voices are auditory or just figments of your imagination (such as thoughts) - the first response from people is usually very negative, and the fear of being sectioned is a very good motivator in not talking about it - I know I'm not a danger but that doesn't mean other people will agree or trust me...

 

Basically, to keep this really short Between the ages of approx 16-22 ish (since there was no official start and stopping) I didn't have a clue what was going on, I didn't understand the rules and new things came at me thick and fast (as they do for a lot of people during this time of their lives) I essentially had a mental breakdown due to lacking the skills to cope in the world, I couldn't handle any of it and I was angry and confused and more angry, because none of it made any sense whatsoever, and this was while simultaneously trying to cope with a multitude of personal issues, family problems and everything else.

 

I don't know if this helps or not or if this is what your son is going through too - all I do know is that it was the worst time of my life, I have never felt so much pain for so long as I did during that time, and it's actually pretty amazing how much it hurt - it really is like being tortured, to feel physical pain all because of the things in your head, it feels like how you do when someone dies, like being ripped apart, shredded, like being absolutely obliterated with mental anguish. If I had one wish it would be that no one else ever has to feel what that feels like - I do hope that your son is not in this pain

 

Darkshine

[Suze]

There is a link," depression, mental health and crisis support" at the top of the page.It has more info and links on it.It has been put up on the forum by the admin team.Not sure the forum has the answers or the qualifications to answer all your concerns on this.I would visit your GP next week and repeat what you have posted on here .

[darkshine]

There is a link," depression, mental health and crisis support" at the top of the page.It has more info and links on it.It has been put up on the forum by the admin team.Not sure the forum has the answers or the qualifications to answer all your concerns on this.I would visit your GP next week and repeat what you have posted on here .

Thanks Suze but I don't feel I need to use any of those services/links etc... I have never phoned anyone about anything - the last thing I can do is verbalise this over the phone.

 

One of my brothers has very similar problems to me - not just about this - he's a worse version of me - he commits attempted suicide at least once every year or two - then he rings everyone, family, samaritans, 999, and anyone else he can think of.

 

Me - well I never would. A long time ago I stood on a bridge over water, I was in a very bad place, But I never rang anyone - what are they going to do? Either talk (which at the time is meaningless), get you sectioned (counter-productive), arrested , or try and shove you in another little box...

 

Anyway - these are the reasons I don't bring this up very often with the people I see - they react in odd ways and nothing really gets done about it.

 

...................................................

 

Purely out of interest and without wanting to cause offence to anyone on here - Why does everyone keep saying I should see my GP? I've already told my current psychiatrist, and before him I told my previous psychiatrist and a psychologist that I saw together for a weird and pointless year (although that year is what got me referred to the development clinic guy who happens to be my current psychiatrist still), and before that I told the psychologist that I did CBT with - if none of them thought it was a problem why the worry?

[Mumble]

Purely out of interest and without wanting to cause offence to anyone on here - Why does everyone keep saying I should see my GP? I've already told my current psychiatrist, and before him I told my previous psychiatrist and a psychologist that I saw together for a weird and pointless year (although that year is what got me referred to the development clinic guy who happens to be my current psychiatrist still), and before that I told the psychologist that I did CBT with - if none of them thought it was a problem why the worry?

I haven't told you this here but it is something I would recommend and tell others. I can only answer from my own perspective, and others may have different reasons for suggesting it (including, and this isn't meant in a bad way to anyone, feeling helpless and a bit scared when faced with someone who might be in danger, and needing to feel that a 'professional' can take over).

 

I've had some very difficult times and I know how hard it can be to talk to anyone, let alone a GP who you feel has the authority to call the men in the white coats with their lovely 'self-hugging' long armed jumper... However, I'm very lucky in that I have a fantastic relationship with my GP, and I suppose it does rely on that though I would still urge anyone with the thoughts you're having to see their GP.

 

When I am having a difficult time or recognise that things are potentially spiralling, my GP will listen, probe and get the facts as to level of danger. She will see me as regularly as needed (every day) and I will have to promise to her (because she knows I don't do breaking promises) that I can keep myself safe till I see her next. We'll discuss the ways I have learnt to manage etc. because it can be difficult to recall these when feeling pretty bad. Having the GP keeping control like this means I only have to get myself through the next 24 hours - far easier than the next week / 6 weeks till the psych can see you for instance - and it means I can cope and can keep myself safe. For me these episodes have normally been fairly short, so it's been a case of monitoring and safety during the difficult times. By seeing my GP it also means there's a record, so she can see if there's any patterns (for instance it was found that a medication was actually causing some of my symptoms) and have a full history and evidence to refer / urgently refer to anyone else.

 

Does that make sense - my fingers are typing before my head's caught up - need more coffee!

[darkshine]

Thanks mumble - it kinda makes sense but only in terms of what you are saying IYSWIM - the points you make are valid and good, but I don't have that relationship with my GP, I don't even see my GP until my repeat prescriptions run out and even then I can get around it by putting in a request over the phone and they just reset the counter again.

 

The last time I did see my GP was in January for a hand injury (clumsy accident) and I haven't been back since - even though I have now "reset" my prescription repeats twice (my meds are done month at a time so more repeats than a few years ago when they were 3 monthly)

 

In fact, I avoid the GP like the plague - I don't fear sectioning from him - only fear that from the shrinks and stuff

 

In addition I can't go out to get to any appointment requires a military operation of planning, forewarning, counting down time, reminders, mental preparation, my carer to not be at work, the time of day is vital for me because of various issues, and even then, after all that, I can still end up having a panic attack and not being able to get out the door

[Suze]

...................................................

 

Purely out of interest and without wanting to cause offence to anyone on here - Why does everyone keep saying I should see my GP? I've already told my current psychiatrist, and before him I told my previous psychiatrist and a psychologist that I saw together for a weird and pointless year (although that year is what got me referred to the development clinic guy who happens to be my current psychiatrist still), and before that I told the psychologist that I did CBT with - if none of them thought it was a problem why the worry?

 

 

............it was the fact that it appears to be bothering/worrying you at the moment that I think members have suggested you speak to your GP.Obviously if you,ve dealt with this issue before and feel comfortable about it at the moment and able to cope also ,then your right...".why worry "

[darkshine]

............it was the fact that it appears to be bothering/worrying you at the moment that I think members have suggested you speak to your GP.Obviously if you,ve dealt with this issue before and feel comfortable about it at the moment and able to cope also ,then your right...".why worry "

Oh well that makes sense

 

I don't feel comfortable with it and I guess being up all night over something so stupid isn't coping... Its just that I've already mentioned this to people (detail somewhere in this post) and once I've said "no" to the following questions they don't really discuss it again even though I make it perfectly clear how distressing this can be.

 

Their primary interests were:

A ) do you hear voices

B ) are you going to hurt yourself

C ) are you going to hurt or threaten anybody

 

Since I answer "no" to all of them that's as far as it ever goes (apart from the CBT guy who helped so it didn't happen all the time).

 

I think these things are very hard for people to understand, I think its also kinda a taboo subject with a lot of people - it is so very difficult to explain - your idea of printing this out might help.

 

I just feel that until I see whether this CBT thing is available to me then I just have to ride it out til it ends - that is my comfort - that it does end...

 

Thank you for explaining

[Suze]

If you feel that the CBT may help you with this then I would......if you can ....try to see your gp next week, they may be able to speed up the CBT referral for you , then you don,t have to wait so long. <'>

[littleplum]

At 17 I used to hang around 6th form waiting for my next class and I felt so alone - that voice, that bully, even though I hated it, it meant I wasn't completely alone - that evil voice has been my friend when nobody else was, it has even helped me before - like I wasn't strong enough so it stepped in (I'm sounding insane.... this is why I wasn't going to reply to anyone individually - but I figured you asked about it for a reason and I sort of can answer) .....

 

Thank you for sharing these experiences darkshine. The extract above reminds me of my own state of mind when I was in my teens and early twenties. I was driven to the brink of suicide by the relentless badgering voice that sought to strip me of every vestige of self-esteem. I felt utterly worthless and useless and this feeling was reinforced daily by the voice in my head.

 

Over the years I have learnt how common this is, and it is not related to AS as far as I can see. My coping strategy was to see this voice as a separate entity that was trying to undermine me. I learnt that it craved attention and would say anything to gain mine. So, finally, I realised that the only and best way to deal with it was to ignore it. And by ignoring it, I don't mean saying to it, 'I'm going to ignore you, so you might as well go away.' That is not ignoring it. I mean literally pretending it is not there. Of course, this led to the voice becoming even more intense, but I persisted and eventually it went away permanently.

 

This all sounds easy. But it was anything but. It took literally decades but it was worth it. Perseverance and a determination to reclaim my mind made all the difference.

[darkshine]

If you feel that the CBT may help you with this then I would......if you can ....try to see your gp next week, they may be able to speed up the CBT referral for you , then you don,t have to wait so long. <'>

Its all very confusing tbh - and the OCD thing does have similarities - I might mention that - except I hate being seen a a hypochondriac so am always cautious cuz when I already have so many things to deal with I don't wanna add more - but at the same time if something does happen to be relevant then it might help to understand...

 

Can't see GP next week - have to wait a month to even get in (unless its an emergency) and by that time my assessment should be due - was told I would get appointment details through post very soon and appointment in sept sometime.

 

To be honest I don't see as my GP would do anything anyway other than tell me I already have access to the MH service - there's another psychiatrist I can ring but not sure if he remembers me as I haven't requested to see him as I'm already seeing one - thought it would waste their time but regardless of that they all get confused and even I can't remember what I have said to who when I see too many people

[darkshine]

Thank you for sharing these experiences darkshine. The extract above reminds me of my own state of mind when I was in my teens and early twenties. I was driven to the brink of suicide by the relentless badgering voice that sought to strip me of every vestige of self-esteem. I felt utterly worthless and useless and this feeling was reinforced daily by the voice in my head.

 

Over the years I have learnt how common this is, and it is not related to AS as far as I can see. My coping strategy was to see this voice as a separate entity that was trying to undermine me. I learnt that it craved attention and would say anything to gain mine. So, finally, I realised that the only and best way to deal with it was to ignore it. And by ignoring it, I don't mean saying to it, 'I'm going to ignore you, so you might as well go away.' That is not ignoring it. I mean literally pretending it is not there. Of course, this led to the voice becoming even more intense, but I persisted and eventually it went away permanently.

 

This all sounds easy. But it was anything but. It took literally decades but it was worth it. Perseverance and a determination to reclaim my mind made all the difference.

Hello That's sort of how it is most of the time - I did a similar thing where I just allowed it to go on without paying attention to it, like mindfulness if you've come across that term - and also with the challenging and stuff, it did mostly go away.

 

Obviously I do not have the control yet to completely make it go away - but I am intrigued that you also treated yours as a separate entity - it sounds weird but its what it feels like sometimes - and the abstraction helps I feel in weakening its power and control...

 

this might sound even weirder like its not weird enough already but it used to call me a traitor for telling on it - is that weirder or just me who thinks that?

[littleplum]

this might sound even weirder like its not weird enough already but it used to call me a traitor for telling on it - is that weirder or just me who thinks that?

 

Not as weird as this. I saw my voice as like a paedophile pressuring me to keep our 'dirty little secret'. (I was actually sexually abused by a man when I was a child.) Looking back I can see listening to that voice as like being 'groomed'. It was hideous and I feel now like I have been freed from some awful captivity, even though it was all in my head. Go figure.

[darkshine]

Not as weird as this. I saw my voice as like a paedophile pressuring me to keep our 'dirty little secret'. (I was actually sexually abused by a man when I was a child.) Looking back I can see listening to that voice as like being 'groomed'. It was hideous and I feel now like I have been freed from some awful captivity, even though it was all in my head. Go figure.

I do not have words to describe how awful that must have been - I wasn't ever sexually abused as a child (I was once as a young adult and there were a few very close calls/near misses with 3 other people around that time) but the voice told me I deserved it. I think outing it helped, and seeing it as evil has helped too in a screwed up way cuz if its evil and different from me then it isn't me is it?

 

I am glad you feel freed from it now cuz I know how bad it can be to live with it - and in a very weird way it's nice knowing I'm not the only one who has had this, thank you for sharing your experience, it helps me to have an inkling of hope that I can overcome this

[darkshine]

Walking that line, walking forever, today, yesterday and tomorrow.

That line of hell and hope, tears and smiles, walking forever, all the while.

Walking a line of exposure and pain, walking forever. A wasted life of sorrow.

[philipo]

Not a wasted life of sorrow!A life when you can't switch off the internal dialouge in your head.its a curse of awareness darkshine,not a classic shizophrenicness.The voice is all the negatives that chip at us all,a voice of exasperation and unfullfillment,and negative reinforcment.its somthing you always have to fight against.

day to day functioning can feel like a fine line and a balancing act,just keep doing it and you'll get better at it everyday,it will reward you well in the future

[darkshine]

The future always seems so far away though doesn't it? Like when you look back and go "ah I see I'm better at such and such now" but at the time it was hell...