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You may not remember me...

You may not remember me...

I haven't been active on the forums for quite some time, but I thought I would pop in and say hello. I start a new course on Monday, I am working with young children two mornings a week, I am more connected with friends than I have ever been... so why am I here about to lament? Stupid MI is why!

My illness currently stands as treatment resistant paranoid schizophrenia and reactive depression and generalised anxiety disorder. Being treatment resistant means medication either doesn't work at all or only works for a certain length of time before I have to change medications entirely. I've even been on the last resort medications... with limited success (one of the meds caused a heart infection which nearly caused a cardiac arrest so I had to come off it quickly).

My graduation ceremony is next week and I am worried I am not going to make it to the event. I am terrified I am going to be hospitalised. My shrink even indicated that might be the case if my current medication increase doesn't lessen my symptoms. I may as well be taking Tic Tacs I believe, as I voices and delusionary thinking is continuing unabated. My voices are giving me the most horrible commands... things I don't want to discuss as its too depressing.

Why does mental illness have to be so complicated?

Anyhoo, thanks for reading. x

41 replies

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In response to: You may not remember me...

Re: You may not remember me...

@Queenie Hey Queenie sorry to hear you have not been doing well. It has taken me a few days to get back to you as I have missed you over the past months and I find that I have to protect myself when formites who I am particularly fond of go away. Please do not go away again for so long as I enjoy hearing about what is happening in your life. Your friend peax

In response to: Re: You may not remember me...

Re: You may not remember me...

@Eden1919 I had real shivers reading your post about handling your voices. It has so much wisdom and courage.

@Bunniekins Hugs Bella

@Queenie Hearing you and hugs for whatever happens, but wishing you best of luck.

In response to: Re: You may not remember me...

Re: You may not remember me...

Hello @Eden1919 you have shared some real pearls of wisdom. I am going out with my support worker today, I can always request to take me somewhere quiet to yell FU to the voices. I don't know how they will react to be honest. Maybe for a short time they will quieten down? It worth a try I think. Lately, I've been listening to music (all kinds of music from Simon and Garfunkel and Neil Diamond to The Amity Affliction and Disturbed which is kind of like death metal). This is an effort to distract and also drown out the voices. They never have anything positive to say, so I figure why should I have to listen to them? I am medication resistant apparently which means meds only work for a certain length of time or not at all. It's tough, really tough, as I am sure you can relate to.

Thanks for replying and sharing your wisdom, I will be sure to take your advice on board.

In response to: Re: You may not remember me...

Re: You may not remember me...

Hey @Bunniekins my friend! I am sorry I went away for so long, I was feeling sorry for myself and wrapped up in my own 'stuff'.

How are you? I am still getting up to speed with everyone, there are so many new members which I don't know now (which is super scary for me, but is my own fault as I stayed away so long so didn't get to know them when they arrived).

It's been decided I will voluntarily go into hospital after the Mrs' birthday in mid November for treatment. I will be taking my devices with me, so should be able to stay in touch here on the forums.

In response to: Re: You may not remember me...

Re: You may not remember me...

Thank you @Appleblossom for hearing me and sharing my journey... I appreciate that. I hope everything will work out for the best for me.

In response to: Re: You may not remember me...

Re: You may not remember me...

@Queenie music is helpful for me as well. sometimes sitting out in nature listening to music can be really cleansing/refreshing for me especially after i have been crying.

In response to: Re: You may not remember me...

Re: You may not remember me...

@Queenie 🙂 life is going along okay with its ups and downs. I hope your hospital stay goes well for you and please yes stay in touch as we love our Queenie and are always interested in how you are going. Love peaxx

In response to: You may not remember me...

Re: You may not remember me...

I tip my hat to you @Queenie living with treatment resistant schizophrenia/schizoaffective disorder, that is so hard, I think you are an incredible person. Some patients really stick in your mind and it was heart breaking to see the same people cycling in and out of hospital with psychosis and nothing is working.

I think taking a break from the online world is healthy. I come and go from the forums, and if you are living with those sorts of symptoms they will put you flat on your bum for weeks/months if it escalates,your doc is wise to act early, we all learn that lesson the bloody hard way.

My doctor wants me to do planned admissions too as a retainer and not wait until a crisis happens. Social isolation seems to set me off, and he thinks maybe because the early life neglect was from such a young age & so persistent that living alone triggers some brain chemistry in me that other people may not experience & that environmental interventions may help keep me well because I live alone.

I have experienced hallucinations and lived with that torment a few years ago, but he believes mine are dissociation & trauma based and their quality is different, your symptoms sound so cruel, inhumane & exhausting. My dissociation goes berserk when I am deprived of human contact & affection for too long......planned admissions are really a tough thing to accept and I can understand why you don't want to go back to hospital, I have been in 3 and a half months this year and this week my doc believes I might be having a delayed allergic reaction to the meds.....I don't know what he's gonna do this week.

Go easy on yourself @Queenie . You don't have pure psychosis. Yours is complicated with traumatic loss and childhood trauma & abandonment and maybe the occasional environmental intervention could be beneficial for your holistic well being. I know hospital is by far a therapeutic environment, but maybe a break from the triggers and habits at home will be good, I hope it is.

I tip my hat to your strength @Queenie , managing chronic and complex mental health conditions is wearying and depletes everyone's energy reserves.

Take care

Corny

In response to: Re: You may not remember me...

Re: You may not remember me...

Hey @Corny thank you for replying and following my story.

You're probably right when you describe my psychotic symptoms (hallucinations). I have a lot of deep seated trauma in my life that I've never been able to process safely (and to be honest I doubt I ever will). I've forgiven my abusers (for my own sake rather than theirs) but not forgotten.

I do have a strong family history, so I know genetics have not dealt me many aces, but its not the in all and end all of my issues. A lot of it have been trauma based, I know that. Issues like my mother dying literally in front of me when I was a child, my brother dying when I was a teen from a terminal illness, abuse and neglect from a stepmother, domestic violence and abuse from partners... it all adds up to several chinks in the armour.

Last time I tried to let my skeletons out the closet, it was a disaster. I commenced EMDR therapy with an inexperienced practitioner and I believe it caused more psychological damage. It literally brought on an episode which saw me hospitalised for months. Not a pleasant experience at all! Another psychologist I saw later on said that EMDR was the wrong kind of therapy for "someone like me". I thought that was rather degrading really.

I take breaks from the online world regularly. I know it worries people (so I should say if I am going away and apologise that I don't). I find I have to, especially when the symptoms are strong. I just hope people understand I haven't gone away deliberately to ghost them or anything.

In response to: Re: You may not remember me...

Re: You may not remember me...

Anyone on here with chronic a mental health condition knows what a tough gig that is and wouldn't judge you, or think badly of you Queenie if you go offline. I think it is really healthy and sometimes exactly what you need and your symptoms are horrendous. I have had to block a lot of websites on my router because they are too triggering. But when you have a history of interpersonal trauma I understand how human relations can trigger your social anxiety and fear of offending people. You've lived it from the inside, so you know that when you're unwell even the smallest gesture of rejection feels soul destroying, so you are not wanting to inflict that on someone, but here on the forums everyone knows that that hyper sensitivity comes when we aren't well or symptomatic and is part and parcel of MI unfortunately. It flares and then goes down and then flares. I can't help but notice that people with mother/child wounds seem to flare very easily.

I find it such a relief to read that I am not the only person that EMDR did that to and quite interesting. I felt like such a basket case, and like I was a lost cause. I was exactly the same and I exasperated the psychologist, she threw her arms up in the end and said that I am just way too complex. From what I have read it can be effective for adult, once off traumas, but if the trauma began when you were a baby or young child with neglect and sensory deprivation or abandonment it doesn't seem to work. Health professionals mean well but I get what you mean. My psychiatrist has earned my total respect and I know he isn't being judgey but when other people say, "people with your type of background", "patients from families like yours", "you are my most complex client", I don't think they realise how many people could potentially give up when told things like that. It makes you think to yourself, well I am just stuffed, there is zero hope for an reprieve from this.

That is so awful that EMDR and therapy triggered a psychotic episode and you are definitely wise to keep some things in that box, your nervous system functions differently and the reality is that science has a whole lot of theories and hypotheses but no real understanding yet. I hope that your partner contacted them and gave them feedback that they need to be more careful and maybe screen patients better.

Another thing Queenie, if you are feeling stable for quite some time and get into a false sense of security that you could do some trauma therapy, what ever you do, same with EMDR never ever let a practitioner do hypnotherapy on you! My doc said to me, "promise me, promise me, promise me that you will never let someone try and "fix" your memories and trauma with hypnosis, because "people like me and my genetics"(I don't mind him saying that, cos he is very caring) are very vulnerable. My doc worked in the prison system for quite some years so has dealt with horrifically traumatised people and he said one of the worst cases of psychosis he has ever seen was in a young fella with a gene pool like mine and a childhood like mine, where some hippy la la crack pot therapist was convinced hypnosis would cure him of his entire childhood and trauma. We're not built for alternative therapies and just maintaining our baseline takes a momentous amount of energy and stamina. There's still so much to discover about the brain and nervous system but until they do all we can do is tread water unfortunately.

Your traumas have crossed your life span @Queenie, you have been through so much. They all add up to make for a very shaky nervous system that doesn't have much stress resilience.

I haven't done much research/reading about coping with auditory hallucinations (AH) for a while, I haven't really been well enough to do any reading, but the poms and the UK seem to approach it differently and more holistically compared to American psychiatry. I remember that being my initial impressions. With Google the algorithms go straight to US sites, but maybe if you search Google.co.uk there could be some info with a different approach and ideas......I read some work by an American Psychiatrist Dr Bruce Perry I think his name was, because I was having strong physiological responses to the dissociation when my hallucinations began and there are some trauma researches in the US that have looked at the dissociative component of AH. Hallucinations aren't particular to schizophrenia like SH isn't particular to Borderline Personality Disorder, but you would be surprised the reactions you get about AH's, people flip out and immediately think that everyone that experiences them can only ever be diagnosed with schizophrenia.

I think in Australia the mental health system is broken & contributing to misdiagnosis & suicide, in that most people who are acutely unwell are diagnosed in the emergency room, and in my humble opinion I don't think this always leads to the best outcome or even an accurate assessment of the patient. ER is completely overwhelmed and it can't be thorough enough for complex histories to be assessed. i really don't think the governments 'one stop shops' they intend to roll out for adult Headspace-like clinics will do any good and will be a complete waste of money.

As I said earlier, planned admissions suck, I am still coming to terms with it & yet to have my 1st, but in many ways what else do the docs have to try in their medicine bag when the damage was done so many years ago at early stages of our development? Asking psychiatry to reverse our childhood home life is a big ask.... your childhood home environment has had a huge impact on you, the meds aren't working for long and maybe the occasional environmental intervention by going to hospital will give you a little reprieve and break up the monotony a tiny bit.

I think that's one of the hardest things for me to come to terms with. MI is so damn monotonous, same thing every single day, it wears you down.

You're doing the right thing @Queenie , its better to act early instead of leaving it and having a longer admission, I really hope it goes OK for you and the other patients aren't too triggering. It can be a mixed bag and there are toxic people out there to stay away from!

Corny

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