Not sure

[Pip09]

I have never been on a forum but thought I would give it a try. I was more after advise or just wanting to know if anyone felt the same. I am have been treated for Schizophrenia for some years now. I have taken every medication and they either don't do that much or the side effects don't outweigh the benefits. I therefore decided that I had had enough and did not want to try anothers. Things have not been quite right with me for a while (before I stopped taking medication) but I stil managed, and continue to manage, to be a single mum and work part-full time. Sometimes I think everything is going ok (do-able) and other days not so much. My mental health nurse (who I continue to see monthly) strongly recommends going back on medication and suggests I go back to see my psychiatrist. He (MHN) also has made a few comments like ...."He (psychiatrist) is very much aware of what's goin on with you" with a look like I know what he is talking about and has made a few comments along the lines I should be worried. I know things are not right but I have an awlful feeling I am missing something and something is very wrong. I know what most people would say, take the medication and talk to your drs, but unfortunately I can't talk to anyone really about stuff like this. There is no one I could say I trust fully. Me writting this is an astronomical achievement in itself. I don't really know what I am asking really I just sick of feeling on guard ALL the time. It literally never stops and I am getting tired and frustrated faking life. In case you were wondering, no I am not suicidal just down and no I have never told anyone this before

[kristin]

Dear Pip,

Welcome to the forums! Thanks for having the courage to share so openly and honestly.

Well you're certainly in the right place to be real about mental illness and the trials of finding help appropriate to your needs. We're a pretty caring bunch I must say, although I'm a bit out of it myself at the moment. It sounds like you have a huge amount on your plate and are managing extraordinarily well with minimal support.

I can really relate to some of what you say, especially about meds not helping much or side effects being worse. But I've got bipolar - I wonder if @kenny66 can relate better & might have any thoughts? (I hope you are travelling better now Kenny)

Pip you might try using the search function to find some of the threads around on things like schizophrenia & medications. You are welcome to ask the rest of us any questions you'd like. You can address a question in a post to another forum member as I've done above with kenny by starting the username with an @ symbol first. That will send the person an email notification. If they're up to it then I'm sure they'll respond.

I'm glad to hear you aren't feeling suicidal & I really hope that you find some of us you can connect with here. Being part of a group who "get" it can make a big difference.

Kindest regards,

Kristin

[Alessandra1992]

Welcome Pip..I am wondering if you could ask your MHN what he means? If you think there's a chance that he may see something that you are not, invite him to share his concerns with you. Ask him why is he worried?
He may be acting in a way that is a bit confusing. So ask him to clarify. What are the concerns about stopping meds? Have you got some strategies that you are using that you could share with him?
I am not sure where you are located but I think peer support is vital for maintaining my mental health. Would you consider attending a peer support group? Ask him if he knows about any voices group or grow groups where you are..
The fact you are still working and being a good mum..kudos to you Pip!
Perhaps you could link into a psychologist, medications are life enhancers for some of us, life savers for others and no use at all for some folk too..it sounds as though you have had a pretty good ongoing partnership with your MHN, I would keep an open ear to what he has to say, but ask him to keep an open ear to your efforts too!

Take care...

[kenny66]

Hi Pip

Well I have schizophrenia too, or more accurately schizoaffective disorder. Mine is a fairly severe form but even so I am fairly high functioning mostly. I envy that you can work and look after your family. You are so gifted with this.

Yes schizophrenia is really hard to deal with. Meds or no meds is impossible to answer. When I have been off my medication (which I sometimes do) I cant say my life is under control, so I don't enjoy it. Its really about quality of life with me. I have very little quality of life unmedicated and I cant be a functioning member of society when I am like that.

On the other side I wont take medication that knocks me out like a zombie-so its getting the balance that I can live with. My regime took 3 years to get right so now I medicate morning-mid morning-lunch-afternoon and night. Sticking to the correct med regime is critical I find.

It keeps the hallucinations at bay and all the other stuff that can go with schizophrenia.This works great for me but everyone is different of course. I strongly resisted mental health professionals telling me how to make me better for a long time. I just stayed sick until I got onto the right program.

If you don't want to medicate, and these reasons are important to you, then only you are in control of that decision. So I guess I am saying its important to weigh up how your quality of life is under both scenarios. There is plenty of community health support and groups who help people who do not want to medicate for various reasons so you might want to talk to them.

Its all about informed choice and you should also definitely involve your psychiatrist and mental health team into your thinking on this before deciding on an outcome.

On balance if medication works well, and in my case it does, then I made the choice to medicate.

[Pip09]

Thanks Kirsten and Kenny,

I have asked my MHN what is he implying and he just says you're under a lot of stress, points out things I have told him that are not quite right and that he is worried but I don't specifically about what. I know something is not right. I cant concentrate, I over react, hallucinations, delusions, jump for fine to ropable in 1 second, don't socialise at all, don't go out unless I absolutely have too (work, pick up and groceries is about it). Simple decisions take forever and cause major anxiety. Noise and people talking to me annoys, interrupts and frustrates me. I do stupid things and can't work out why. I don't actually know formally with what I have been formally diagnosed as but schizophrenia, depression and anxiety seem to be the words thrown around a lot. I know I am depressed, I know I have anxiety and unfortunately I know I am schizophrenic. If I know and recognise these things why is it so hard to control them with or without medication. I have tried many, in varying combinations and dosages. My psychiatrist/MHN has suggested c....(wont let me write it 'bad word'), which after looking into it does not sound like something I would opt for. Sometimes I think I am (and my psych and MHN) are just over reacting and nothing is wrong then other days I would prefer to be dead. I am sick of going to MH appoints and feeling like I get absolutely nothing out of them. It is not him either, it is me. I feel like I am wasting his time as I cant actually say what I want to say (golden rule- never ever tell. EVER) and despite what I read about quality if life etc I honestly believe this is as good as its going to get and there is nothing I can do about it

I appreciate the welcome and the kid words of support

[Pip09]

Sorry and Sandy

[NikNik]

Hi @Pip09 

It would be hard to make a big decision about meds when you feel the way you're going is the best that it's going to be. For me, the line is whether it's impacting/restricting every day life. What you have described of your day to day life sounds very overwhelming for you.

What if the focus was taken off just the medication?  Could trying different therapies help? From what I understand, a combination of treatments that work together, can really help. I'm not sure what else you have tried before, but could visiting a psychologist add a new dimension to your treatment plan?

Also - just wanted to let you know, the 'bad words' (terrible name, but we can amend it) filter won't let people mention specific medications. The Community Guidelines highlight that discussing specific medications is discourage. You can read more here.

NikNik

[Alessandra1992]

Hey Pip, I think it is a hard space to be in for you but if you are still working with your MHN, then you can explore other avenues..would counselling help with your anxiety?
Would trying a specific n and if therapy like ACT help? Its a therapy based around mindfulness and I love it..works across all kinds if diagnoses or issues and in all kinds of ways, groups, one on one, with addictions, anxiety, schizophrenia, bpd..huge evidence base..
If you trust your MHN, would you consider looking at a voices group? Would you consider working on relaxation techniques?

Sorry Pip, I am asking too many questions which may be really annoying. I just agree with @kenny..it is your journey and want to support you..

[ivana]

Hi Pip,

Would you mind explaining the Hallucinations in detail?Eg are they visual,auditory,visual patterns,smelling things that arn't there etc...
What's your age and does anything trigger the symptoms eg:stress,hormonal cycle etc?
Do you have any Physical symptoms?
Have you been offered anything for your stress?

[Pip09]

Hi Nik
My MHN does not focus on medication as such. He mentions it every time I see him and says that he recommends that I start back. Then he leaves it be being my ultimate decision which then continues to support. His reasoning being that this new medication works so much better. It may. It may not. I do not know but what I do know is, it requires me letting go of what I considerer an massive invasive of privacy.

In regards to new therapies. It is seriously a big deal that anyone knows and would not be comfortable starting therapies, meeting new people, telling them about myself. I am not happy the MHN and psychiatrist know.