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-   -   Beyond repair. (https://www.recoveryourlife.com/forum/showthread.php?t=248931)

Bellatrix 17-12-2019 08:56 PM

If you needed urgent medical attention you could call an ambulance.
I'm glad it's not needed

What parts are you worried about?

chinahorse 17-12-2019 09:02 PM

And how would I get home afterwards? I can hardly walk 14.7 miles.

Pomegranate 17-12-2019 09:59 PM

You said it was in the evenings there was an issue. Not during the day. People are trying to be supportive and helpful and whilst I understand your frustration, having been in very similar before, your anger that comes across in responses seems very displaced. Oh, And a&e can arrange transport or funded taxi home in some circumstances.

chinahorse 17-12-2019 11:53 PM

The world isnt rainbows and stars and neither am I. At no point did I say hello me get medical help. I said I'm worried about PIP. To start a conversation about that. A and e doesnt have funding jn my area nor do I or did I want to talk about that. Either respond to what I want help for in my thread or leave it alone.

chinahorse 17-12-2019 11:54 PM

Also. 5.29 is evening in terms of public transport.

Pomegranate 17-12-2019 11:58 PM

You’re correct. Nothing is, but that doesn’t mean you have to be rude when people are trying to help. The world may seem shitty but doesn’t mean your responses need to be.

That aside, you mentioned wanting help. What would you like us to help with? Is it to talk about PIP anxiety or is there other things as well?

chinahorse 18-12-2019 12:03 AM

She wasnt trying to help though? Not with what I asked for help for.

This is why I dont ask people for help in everyday life. They dont listen. Answer what they want and think the issue is. Not what I've asked for help for.

And I am not rude. That is your interpretation. And it is wrong.

Fire Fly 18-12-2019 12:43 AM

But the thing is that you’re not exactly wanting helping either to an extent. Things people offer your dissatisfied with. This people suggest you just don’t want to try out but you then decide to have a go at people on a thread. What’s the point in being rude about it? Not happy with what someone says don’t rise to it. You say you want help but then you’re not trying to source it. You get up and leave your psych appt, you’ve declined support a few time throughout this thread from a professional.

Whilst MH services are sytetched, you’re currently not working. If you get a job you can try to arrange shifts around a certain day or half day to avoid because of medical condition. Jobs aren’t really allowed to not hire because you can’t work half a day or a certain day because of medical appointments. Can you arrange psych, psychologist/con/hospital appt etc around it?

I’m not sure that this thread is really helping because the thing is a lot of what you ask you know it as you “been there before”.

Fire Fly 18-12-2019 12:44 AM


Originally Posted by chinahorse (Post 4250689)

And I am not rude. That is your interpretation. And it is wrong.

Haha but this is^^

Auror. 18-12-2019 01:45 AM

Do you want to talk about your anxiety related to PIP?

I get being really frustrated. One thing I've noticed is that a lot of times recently you've only been responding with either one line or minimal responses.

It's absolutely up to you to choose what to share or to be worn out and not want to post a detailed response. But I think then sometimes people can have a hard time knowing what to say or how to interpret what is going on for you, and maybe that's when assumptions get made?

Also re the prolactin thing, are they checking into that further if your levels are still too high? Would the medication the psychiatrist suggested impact prolactin levels? I guess it's just hard because a psychiatrist's main job is to prescribe and help with psychiatric medication. So if you're not currently taking any medication and also unwilling to take anything, there really isn't much a psychiatrist can do for you. I get being frustrated with them not listening, but if the scope of their work is to suggest/monitor your psychiatric meds, then there's only so much that person can do outside of that. That doesn't make it right, and I get why you walked out. But unfortunately walking out and not trying to communicate what is going on might not be seen as wanting help or as willingness to engage by your providers.

When do you next see someone for support?

Pomegranate 18-12-2019 02:01 AM

Why do you think people reply unless to try and support you?

Perhaps (as hard as it may be) you could state clearly what you want support with because atm I’m a little confused

chinahorse 18-12-2019 10:18 AM

Where have I recently declined support without extremely good reason? As in jn the last few months?

Why has getting a job been brought up? What has that got to do with anything? I am too unwell to work- as several qualified medical professionals have stated. Also jobs can absolutely not hire you if you are unable to work certain days.

It is not for you, fire fly, to decide if a thread is helpful or not. That's my decision. There have been times I've not posted because of that reason but it's a choice I alone get to make. If you dont think its helpful and dont want to post then no one is making you.

Maybe if people dont understand how to interpret what I've written they could ask?

In everyday life I am a minimal words person. Which people may not know. But you do now. I wont use 12 when 5 could do. I do not wish to change this. Nor think it needs changing. Again if people do not understand what I have written they could say so.

In a similar way I have fibromyalgia. Which some may not know. Its main side effects for me are pain and exhaustion. This can affect how much I can write. Sometimes using my hands hurts. But this does not mean I dont want response or input.

My psychiatrist is writing to my gp. Who I already saw and made aware of the situation because I know it's not within the scope of the psychiatrist. Yes the meds the psychiatrist suggested would raise prolactin in susceptible people. Which is why I said no I dont want to be on them. Aware that there was nothing else the psychiatrist could do and also frustrated I told him I was going home as there was nothing further he could do.

Dont know when I next see someone for support. See cpn friday for the PIP assessment. Not for support.

I stated clearly that I was anxious about the assessment. Indicating that is what I wanted to talk about. I dont know how to make it clearer than that? Perhaps I could add on the end that is what I want to discuss and want help with which would make it more a question and less a statement.

one_step_closer 18-12-2019 11:07 AM

Do you have specific worries about the PIP assessment? I know it's a daunting process overall.

chinahorse 18-12-2019 12:00 PM

Worried that the assessor is a man. Didnt want to delay it by requesting a female though. But cant admit weaknesses to men.
Worried about finding the venue.
Worried that assessor will sit between me and the door.
Worried I will get upset and not talk.
Worried the Man will tell me not to talk.

Also it feels like a test. I have to prove I have illnesses that are not able to be proved by any tests. Set up to fail.

Worried how long decision will take.

Desperately need the money and the effect getting the benefit will have on other benefits.

And theres local things I want to spend the money on that could help with my health. And I'm a bit excited by this. But sad that if it's no I wont get to do them.

If it's a no I cant live.

one_step_closer 18-12-2019 02:28 PM

Those are huge worries, I'm sorry everything is so stressful right now. Could you share your worries with your CPN just so she's aware? You could write them down and give them to her before the assessment. I really do hope they give you what you need, it sounds like you'd be using the money for good things too. Is your CPN coming into the assessment? If she knows all of these things then she should be able to advocate for you a bit at least.

Bellatrix 18-12-2019 06:18 PM

Tbh I was asking because you said you were bleeding to death. So that was kinda a priority and no one had checked. Apologies if it was the wrong thing to do.

Indigo. 18-12-2019 06:41 PM

It's not fair that you have to prove your illness/es to some random person just so you can get the money to live. I do hope, however, that it goes smoothly!

Is your CPN coming with you to the PIP assessment? It sounds like it would be good to have someone there who can advocate for you. If she is coming, could she also help you talk about fibro and how it affects your quality of life?

I can really relate to feeling like people assume what's best for you when perhaps your needs are different, and perhaps it's hard to express exactly what you need or it's not getting through to others. It's fair to be upset about that.

But I also think it's fair for someone to be worried for your safety if you posted something that sounded like you might be in immediate danger. Safeguarding is important, and people would want to first make sure that there wasn't an immediate threat to your life/safety.

Pi.R^2 18-12-2019 06:47 PM

As I've said to you, I don't think you've done anything wrong Lillie and I'm sorry that you're being attacked. You do not have to justify yourself in terms of not having a job. The very thought of anyone trying to make you feel bad about not working fills me with panic; if anyone doesn't need any encouragement to work when they're not able to, it's you! The way you help down a job in various past crises is nothing short of phenomenal.

It is not the job of anyone to decide whether or not a thread is helpful but if it was my job I'd say it's clearly helping you because you are still alive and still trying.

I really really hope this PIP assessment goes OK; both the appointment itself and the outcome. Remember that something ridiculous like 70% of appeals against PIP decisions are successful so even if the decision isn't initially in your favour, that doesn't mean it's the end. I know it's so hard but please ignore any Man-themed instructions and tell the assessor as much of the truth that you can. It's not in your nature to be explicit about how bad things are but unfortunately that's the way to get the help you need in this instance.

Auror. 18-12-2019 06:52 PM


Originally Posted by chinahorse (Post 4250478)
Prolactin level is even higher.

Didnt really listen to much else.

Some discussion about restarting sertraline anyway.

Got up and walked out and went home.


Sleep on the sofa with bertie.

I give up.


Originally Posted by chinahorse (Post 4250713)

In everyday life I am a minimal words person. Which people may not know. But you do now. I wont use 12 when 5 could do. I do not wish to change this. Nor think it needs changing. Again if people do not understand what I have written they could say so.


My psychiatrist is writing to my gp. Who I already saw and made aware of the situation because I know it's not within the scope of the psychiatrist. Yes the meds the psychiatrist suggested would raise prolactin in susceptible people. Which is why I said no I dont want to be on them. Aware that there was nothing else the psychiatrist could do and also frustrated I told him I was going home as there was nothing further he could do.

Hi Lillie,

So I think this is an example of the same event, but because you did not post a lot of detail in the first, the second paints an entirely different picture of how things went. I would respond very differently to the second post than I would have the first post.

It is your thread and you have the right to post however much or little you want. But I think one thing is important to remember is that how you describe things to people can make a difference. When you only post limited information, that is all we have to go off of. Both in person and on here.

I can understand not having the energy or pain levels being high to talk or write things out. But at the same time, it can often be really important to frame things in a way that gets your point across accurately. Often using minimal words (again irl and on here) can convey a negative tone and/or not really give a lot of important information.

This isn't to have a go at you at all. Only to show an example of why people might have misunderstood what was going on for you based on your limited words. If it isn't something you want to change that is again your choice. But not everyone is always going to know the right clarifying questions to ask or the right detail to ask for. Or think it should be up to them to ask. So sometimes you giving more information can be really important.

I really hope your PIP assessment goes well. Can you ask your CPN to go in with you and/or for additional support if you need it?

chinahorse 18-12-2019 09:37 PM

My cpn is driving me to the assessment so I will try very hard to tell her that I need to sit closer to the door than anyone else. This is one of my main worries because I will be very stressed and probably unable to explain why I need it that way in a way that means it happens.

I printed out some graphic injury photos. That way I cant downplay it as a bit of self harm. When it was very physically dangerous . Pictures speak volumes and all that.

CPN is coming into assessment with me. Good. But not good because she doeant really know anything about me.

Buttons. 18-12-2019 11:42 PM

So hope the PIP assessment goes well.

Asplenium 18-12-2019 11:47 PM

I've been prescribed cabergoline to treat high prolactin levels that have been caused by taking risperidone. I wasn't lactating when I was first prescribed this but blood tests picked up the high prolactin levels and I didn't suit ariprazole which was initially prescribed as an alternative to risperidone. I've not had any issues with prolactin since being prescribed cabergoline.

Auror. 19-12-2019 01:29 AM

That all sounds really good. I know it's probably hard because the CPN doesn't know you, but that doesn't mean they don't care and don't want to support you as best they can. I think you can just say something like, "I am worried about feeling trapped and unsafe during the assessment, can you please make sure I am sitting next to the door so I feel safer?" That doesn't require a lot of explanation, but it should be enough for them to get it is important.

I really hope it goes as okay as possible.

chinahorse 19-12-2019 09:12 AM

Caberglline does work for me but they need to establish what's causing the raised prolactin first. I'm also not entirely sure if a GP can prescribe it. Think it may have to initially be done by consultant? So, it works but isnt an option right now.

Yes I can say that. Thank you.

Auror. 19-12-2019 06:56 PM

Thinking of you, and really hoping you were able to get through the assessment okay. <3

chinahorse 19-12-2019 10:04 PM

Its tomorrow morning.

Got into bed because it's my safe place.

Really considering not going. My want to tell a complete stranger how shit at being a human I am so he can write a report to give to other people who can decide if I'm shit enough to deserve money is absolutely zero.

Indigo. 20-12-2019 08:33 AM

Thinking of you today. I hope the assessment goes well <3

Do you have much planned for after? It can be helpful to plan self-soothing/distracting stuff after something so stressful. Even if it's something simple/very low effort like cuddle with cat + have tea? X

one_step_closer 20-12-2019 03:38 PM

I hope everything has gone ok. Sending lots of love.

Auror. 20-12-2019 07:29 PM

I'm glad you have one safe space. I hope you were able to actually go to the assessment. I know it really sucks to have to do things like this. I hope you can go home and get some snuggles with Bertie after.

Unbreakable. 28-12-2019 12:49 AM

How are you?

chinahorse 28-12-2019 08:30 PM

I'm not good. And I dont have anyone to call.

Buttons. 28-12-2019 10:01 PM

Sorry things are so rough Lillie. Do you want to say a little more about what’s going on?

Unbreakable. 28-12-2019 11:15 PM

I'm here if you need to talk <3

Indigo. 29-12-2019 12:05 AM

Thinking about you Lillie <3

one_step_closer 29-12-2019 10:28 AM

We're here if it helps to post.

tamobhuuta 29-12-2019 10:31 AM

Sending love x

chinahorse 29-12-2019 10:58 AM

Theres lots and nothing going on.

I hate this house. I hate it so much. And to get out of it and go home I need to be able to work. But I cant.

I keep having panic attacks. And I hate being out of control.

I hate having no purpose.

I hate being inadequate.

I'm really sad.

I feel like I'm loosing everyone. People from plymouth because om Not starting the conversation. Other people. Family.

No one is proud of me. Friends think I need to get some perspective, grandma told me off for not wearing make up and kept insisting that I get a job. Friend and husband and his family are all doctors and scientists and solicitors. And my brothers wage and success in his chosen field is eye watering. Even when I do earn I'm on less than half of what he is.

Dad loves me but I keep having to take money off him and it's made me very uncomfortable and I dont want to see him.

I'm stuck in a horrible house. With a so called family who dont understand. A cmht that are mostly absent.

I'm scared I have a brain tumour. Which is a recognised and not rare cause of the symptoms I have that made me stop medication.

And I'm so deeply sad and worn out and fed up. And every time I think I might be able to go on the Man is outside my house or in my head and is strangling me again.

one_step_closer 29-12-2019 01:06 PM

That's a lot, and a lot of judgements from yourself and other people. I wonder what it would be like if you could hold off from judging yourself so harshly. I think you are doing what you can and in the future you could do even more if you want to. Are there small steps you can take to change some of the things that are getting you down? I know it's not easy and some things can't really be changed but maybe how you manage things could at least be changed. Did you speak to your GP about your concerns about the medication? When are you next seeing someone from the CMHT?

chinahorse 29-12-2019 05:53 PM

Dont know what's going on. I should technically be referred to endocrinology. But I dont know if that's been done. Dont know if psychiatrist has written to gp to ask them to do it or if gp has done it herself. And itll be a huge wait anyway.

Supposed to be seeing a support worker and my cpn on the 2nd I think it is.

one_step_closer 30-12-2019 11:01 AM

Would you ask your GP if the referral has been done? I know that a long wait can make you feel really anxious, but if you knew you were on the list it might help a bit. Do you know what you want to say to your CPN and support worker?

chinahorse 30-12-2019 01:24 PM

GP only works 2 days a week. They are bank holidays. And whilst I know reception could tell me they wont because they are idiots.

I want them to make it better or fuck off.

one_step_closer 30-12-2019 06:17 PM

What does better look like to you? What do they need to be doing? Surely it's better even to have someone there for you through the hard times, I'm not sure anyone can make things completely better but it would be great if you could work with them and come up with some things that would be useful for you. Is the support worker able to do practical things with you?

Indigo. 30-12-2019 06:26 PM

Do you think your support worker/CPN could help you communicate with the GP to find out about the referral?

chinahorse 30-12-2019 06:26 PM

That what I want. To be back to normal in Plymouth. They make that happen or fuck off and let me die. I'm fed up with services doing next to nothing and claiming I'm not engaging or I've tried everything so they will just let me suffer. I want to be better and back to normal. It's their fault it's this bad so they have to fix it.

Indigo. 30-12-2019 06:29 PM

Is there a care plan or something along those lines, to help you get back to normal? What are they (e.g CMHT) saying they'll do to help you?

chinahorse 30-12-2019 06:33 PM

Care plans are stupid. Cpn told me shes doing it only because she has to. I've had no part in it nor will I. They write stuff down and then blame me for everything.

I'm doing 5 sessions of therapy at some point. Havent got a start date. Theres a support worker but what use will that be? I've sorted it out myself or friends have because when I asked for help with benefits and things it was weeks and weeks ago.

one_step_closer 30-12-2019 06:47 PM

Do you know what you need in order to get back to normal in Plymouth?

chinahorse 30-12-2019 06:54 PM

Able to work. Not having melt downs and panic attacks. The whole probable benign brain tumour thing to be sorted. People to leave my job in plymouth so I can go back. Money. For moving and storing my stuff. I have someone i can stay with while i work and get the deposit and rent in advance together.

I need out of this house. It's not fit for purpose. Estate agent has once again failed to do what they promised and contact the plumber and let me know when hes coming. Not that he can do the job properly. If he had the toilet wouldnt be broken again. And it's so cold in here. It's really badly affecting my fibromyalgia. And that's making me take more and more painkillers. And I cant take the meds that help because of the stupid probable brain tumour.

Indigo. 30-12-2019 07:04 PM

It sounds like things are taking longer than they should. Care plans would be useful if they actually did them to help you and you were given the chance to be involved in your own care...

Perhaps the support worker will be able to help with some practical things. If you haven't met them yet, you could ask/they may tell you how they can help at your appointment.

I should think that a support worker would be able to liaise with estate agents on your behalf and push them to fix what needs to be fixed. Is the heating issue something they can fix, or is it a financial issue?

chinahorse 30-12-2019 07:21 PM

I'll probably try to go to meet the support worker. If it isnt sunny.

And I can push the estate agent myself.

There isnt any heating. It's not broken there just isnt any.

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