Thanks for your reply and the suggestion. I find it really hard to add additional sensory kind of things when I'm trying to sleep because they annoy me and I have to be in an exact position on my side with my arms and hands in the same position and only certain things touching me. I bite my knuckles sometimes when I'm distressed but I don't think I would manage with something else in my mouth.
I put it down on paper and then the ghost does not ache so much.
Don't try to calm the storm, calm yourself, the storm will pass.
That’s fair, just thought I’d suggest it :). I’ve had to use my dummy a lot recently, so that’s what made me think of it!
I also made a comment on your blog thread a couple of days ago about your routine. Although it is distressing for you, finding it hard to deviate from it makes sense as a neurodiverse person because that’s literally one of the things they test for, if you’re sensitive to routine changes. I’m afraid I don’t have any suggestions on managing that one, I tend to lose my shit when my routine changes and it’s a very difficult experience so I sympathise <3
Yeah, I do understand it's likely to be an autistic thing as does my CPN but still he doesn't seem to get that I can't just easily change my routine. He told me to stop saying I can't do things and just do them.
I put it down on paper and then the ghost does not ache so much.
Don't try to calm the storm, calm yourself, the storm will pass.
Easier said than done I’m guessing, right? However, at one point you didn’t have the colouring group in your routine, so actually when you think about it you can change things and add new things in, although I understand this is distressing.
I do see that. I'm hoping to add in going to the gym once a week. It's just very much that I have to work it out myself and only make small changes that suit the rest of my routine so don't add things when I have a lot of housework to do or something. I'm also trying to allow myself to not do one piece of housework if I have a lot to do on the day or try and do a different activity if it's something like reading time but I can't focus. I can have logical conversations with myself knowing that it's not going to be a disaster if I don't hoover every couple of days for example it's just that I have an overwhelming emotional reaction that won't listen to reason and that's hard to manage because I am useless at self soothing. I have phoned my CPN in tears before because I was running late with my routine. I'm very good at overreacting to things.
I put it down on paper and then the ghost does not ache so much.
Don't try to calm the storm, calm yourself, the storm will pass.
I'm really not coping with everything life is throwing at me right now. It seems like every day something new is added to make things more and more difficult to manage. Last night I had my usual distressing uncomfortable time in bed and I tried to stretch my neck and somehow ended up twisting my shoulder so now it's really painful all the way down my arm and into my fingers. My clothes rail fell down in the middle of the night and when I tried to lift it up it did something to the fingers on my other hand. I was thinking through the night about how there is nothing I want from life so why am I still alive? I'm not interested in any kind of job, I don't want a partner, I don't want a family, I don't want to go back into education, I don't want to travel, I get nothing from the activities that I used to enjoy and I can't find anything I want to try. My back and neck are now more sore in preparation for the hell that is going to bed. I used to be nice and comfy and relaxed in bed but now I don't have that and I have tried different pillows. My CPN and psych said to ask my GP for painkillers but I doubt they'd prescribe painkillers for this and I don't want to go on potentially addictive meds anyway. I can't see any hope that anything will change.
I had an appointment with my psych this morning. I tripped up in front of the health centre and struggled to get up because my arms and legs are painful and weak. My appointment was at 10.30am but the secretary came out to me in the waiting area and said he was running late and I'd be seen at 11am. At 11am she came out again and said he was still running late. I eventually saw him at some point after 11.30am. I was crying a bit in the waiting area just because I feel suicidal. My psych said if I feel hopeless and don't want anything from life then there is no point in me having support from the CMHT. What a way to make me feel better! There's nothing really that can be done med wise because I have tried so many meds. I asked him about my diagnoses because the ward psych says I have EUPD and Primary Psychotic Disorder but my own psych doesn't agree with the PPD. He said he thinks it's EUPD because I don't respond to meds long term and if I had some kind of psychotic disorder the antipsychotics would keep me well. He said if I wanted I could change psychs because the ward psych also works in the community she just doesn't cover my area and I do feel like she understands me better and maybe she would have ideas about what might be useful but I didn't feel comfortable saying to my psych that I would like to change. I will talk to my CPN about it though. I feel like that's not something to hold on to though because I've tried so many treatments surely she will have nothing new to offer. My psych decided to change the way I take my Trazodone so take a small amount in the morning and a bigger amount at night and change my night time Quetiapine to whatever it is when it's not modified release but no meds that are supposed to cause drowsiness actually make me drowsy.
I can't think of one reason to hold on, for me. All through my life I have put other people before myself but now I just want to do what I need to do. Which is to end this shit completely.
I put it down on paper and then the ghost does not ache so much.
Don't try to calm the storm, calm yourself, the storm will pass.
I hate the phrase but when you've lost hope is when other people are meant to hold the hope for you. Maybe this psych was trying to push you to find some hope but instead was a dick? Just because you've tried a med before, doesn't mean it won't work 5 years later, our bodies change. Being treatment resistant doesn't mean you're not ill.
Thanks. I don't understand why my psych says a lot of the things he does. I think I want to ask about changing to the other psych but I'm also really wary of doing that. I know he said to me I could see the other psych if I wanted to but I feel like if I mention it to my CPN he might say that I just want to change psychs so I can hear more of what I want to hear because he accused me a while ago of trying to talk to Duty because I wanted to find someone who agreed with what I was saying because he didn't.
I put it down on paper and then the ghost does not ache so much.
Don't try to calm the storm, calm yourself, the storm will pass.
I wish I could have that attitude! I'm so easily upset by peoples negative opinions of me. I still can't predict how my CPN is going to be with anything I say, he's a random mix of ok and unhelpful.
I put it down on paper and then the ghost does not ache so much.
Don't try to calm the storm, calm yourself, the storm will pass.
You're not responsible for other people's thoughts and attitudes. That's a him problem.
I get that it's upsetting, but I really think it would do you good to have a change in psych. Nothing the current one has done has worked so far, so maybe this is your chance for a positive change!
Imo, it's worth a little upset and uncomfortableness to potentially make a good change!
I'm fine! Totally fine. I don't know why it's coming out all loud and squeaky, 'cause really, I'm fine!
I had an appointment with my CPN today. It was a bit mixed. He doesn't think my current psych would agree to me coming off Quetiapine to go back on Lurasidone. He would allow it to be decreased or stopped but I remember how I was on lower doses. My CPN's personal opinion is that if I keep myself busy I don't even need to be on an antipsychotic??? This is one reason why maybe I should ask to change to the other psych because she said to me when I was in hospital that she thought I was doing well on Lurasidone so maybe she would be ok with me changing back. My CPN said the ward psych is very all over the place (I already know this) and she often doesn't come in when she says she will and doesn't see her patients very often. So this is a reason not to change to her. But if I did change, I could still get my CPN to pass things onto her. My CPN said to take some time to think about who I want to see. I need to figure out what the other psych thinks about me possibly being autistic. It was discussed a lot between me and the nurses on the ward but the psych never mentioned it to me.
I got a copy of the notes from my last hospital admission. They made me sad. I find it really hard knowing that almost my whole life has been documented by other people and it's never accurate notes.
I put it down on paper and then the ghost does not ache so much.
Don't try to calm the storm, calm yourself, the storm will pass.
Sorry for posting again. I don't know if anyone will have any advice because I feel like absolutely no one can help me any more.
Everything is spiralling mentally and physically. I have been having urges to go wandering either to find death or just to wander and never come back. I managed to resist today despite getting ready to go out a number of times but the fact that I am having these urges is usually a sign that I'm getting more unwell. If I am getting more unwell it's just going to have to be like that because there's nothing further than can be done for me. I have treatment resistant depression, I've tried numerous kinds of talking therapies, meds in general don't seem to do much. I can't sleep much because of pain/stiffness/weakness/discomfort in most of my body and no meds that usually cause drowsiness affect me in that way. A lot of my pain is due to psychological distress supposedly but I do have an appointment with a GP next Thursday. I'm not managing to do most activities. I start them and I feel such despair and I don't want to do them any more. I have to stop because it makes me upset and then I'm just sitting not knowing what I'm actually able to do. I'm sad that I can't even look forward to some rest in bed through the night. I don't know what's going on with me about the other world stuff because the stormy weather today also made me really aware that I am supposed to soak up as much rain as possible to protect other people which is something that the men told me ages ago but I haven't really felt it strongly for a while. My own psychiatrist and the ward psychiatrist don't agree about what the other world stuff is but my own psychiatrist tried to explain what he thinks and it wasn't clear to me what he meant. Since they both can't agree I feel like I don't know at all what is going on and I would prefer to have a clear explanation. I think my psych said since I have tried lots of antipsychotics and I still end up being influenced by the other world stuff it means that I'm not actually psychotic because people who are psychotic don't relapse on meds. I'm just so confused.
It feels like there's no point in reaching out because no one knows what to say or do any more. On top of physical and MH stuff I'm realising how hard it is to be autistic in this world and I'm overwhelmed. A lot of the ways I have safely coped in the past don't help any more and I can't figure out what does help. I don't want to keep living like this. I'm not living for myself because I see zero hope of ever feeling better since I have been at this mental illness game for near enough my whole life. I just don't want to get suicide wrong and maybe end up being physically or mentally worse than I am right now. But I do not want to just keep existing. I'm trapped.
I put it down on paper and then the ghost does not ache so much.
Don't try to calm the storm, calm yourself, the storm will pass.
