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

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.

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

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.

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.

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.

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.

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.

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?

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.

So hope the PIP assessment goes well.

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.

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.

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.

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

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.

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

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

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.

How are you?