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Old 30-10-2019, 06:01 PM   #1801
one_step_closer
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I don't know how to get anything across to my CPN since I'm usually more composed with her unless I'm really upset and bawling. I could maybe copy some things I have written here but I don't know what is important and what isn't. I think a lot of the time too my CPN reads what I write but doesn't hear what I'm trying to communicate. It's because I look ok on the outside most of the time other than being anxious. Plus I am always hugely grateful to have an appointment with my CPN so I feel a bit better in the moment usually. I will maybe directly copy some things from here and show her what I get like. I really need her support.





I put it down on paper and then the ghost does not ache so much.


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Old 30-10-2019, 06:21 PM   #1802
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I actually don't think there's anything here worth showing her.

I can't do this.





I put it down on paper and then the ghost does not ache so much.


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Old 30-10-2019, 06:27 PM   #1803
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In hospital they saw some of the things I go through daily. I wonder how they have recorded things in my notes, if my CPN could speak to the people who saw me distressed then she might get a bit of a picture but I find that the notes they write don't convey things very well either. I couldn't ask my CPN to talk to the ward manager, she'd think it was pointless and it probably would be pointless.





I put it down on paper and then the ghost does not ache so much.


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Old 30-10-2019, 07:50 PM   #1804
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I think it is worth showing her some of what you wrote here. That is a really good idea.



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Old 31-10-2019, 02:25 PM   #1805
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Thanks.

I didn't copy out anything or write anything at all, nothing seems to explain anything. I did manage to say some things maybe not important things. My CPN wants me to focus on the things I do manage to do rather than the things I don't manage to do and that it's ok not to do things while I'm struggling. She did ask me to go to the gym group today and I was planning to but then I got out of the health centre (my appointment was before the group) and everything was huge and scary and the men were slightly about and I felt like I couldn't go to the group so I didn't. Now I'm very annoyed with myself because it's like I was using what my CPN as an excuse not to go (although that's not actually what I was doing). I need to get back to the group and I don't know how to manage other than meeting up with the worker or another worker beforehand and going in with them but the worker who is also my key worker sees someone else before the group and I don't think I could ask if she could arrange support for me from someone else because I'm kind of scared of her being annoyed. She did tell me a while ago I just need to push myself.





I put it down on paper and then the ghost does not ache so much.


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Old 31-10-2019, 04:47 PM   #1806
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Can you expand a bit on what made you feel like you couldn't make it to the group today? Do you normally enjoy it once you're there?



We may not see eye to eye, but we can respect each other's opinions and find the truth in them.
Perhaps in those honest conversations, instead of demonising each other,
we might see each other as imperfect humans, doing our best. ~ Jodi Picoult


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Old 31-10-2019, 05:30 PM   #1807
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What about contacting one of the other people in the group to meet beforehand and go in together?

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Old 31-10-2019, 06:10 PM   #1808
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I do like the group usually. Even if I arrange to meet up with someone from the group beforehand I usually end up letting them down because I panic last minute or just feel generally too terrible to go. It's hard to find the words to explain what stops me from going, I'm not managing to do much right now. I'm just a failure. I thought it would be easier to go today because I had the appointment before it and the leisure centre is just behind the health centre and it was only half an hour before the group was due to start. I need to get back to it.

I spoke to my CPN about my worries about MH professionals and people in general and she said to focus on myself. I hate myself! I show far too much kindness towards myself as it is. I can't be gentle with myself, I always have to be harsh and bullying. I do wonder what it would be like if I accepted what I can and can't do and didn't worry about pressure from others and was kinder to myself. If I could manage that then things might be easier but it would be a battle to manage it in the first place and I really don't deserve any kindness. I wish I wasn't such an awful person.

I long for some proper self harm. I can't cope with life.





I put it down on paper and then the ghost does not ache so much.


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Old 31-10-2019, 07:11 PM   #1809
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Hey just wanted to say that you're not alone I can barely manage to do anything at the moment just struggling. I can relate to what ur saying

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Old 01-11-2019, 02:06 PM   #1810
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I posted in R/V initially because I didn't want this to be generally public on the internet in case my brother stumbled upon it but I could do with some support. I got my medical notes through. I really should stop requesting them, they are so upsetting, but they always tell me things that no one else has told me or show up inaccuracies in recording them.

The first thing I read about was 'no obvious respiratory effort' and that was kind of upsetting. I thought that would be the worst thing I'd have to deal with reading but no.

Small things:

- 'had poor eye contact throughout...when she did make eye contact it was intense and uncomfortable.'

- 'told staff on one occasion that she might ligature' - TOTAL LIE, it doesn't even say that in my nursing notes.

Huge thing:

I knew my ECG was abnormal only because I took a photo of the screen when the guy went to get the printout looked at. He came back and said it was ok and gave me the sealed envelope to take to the ward. Nothing was said at my inpatient review about my ECG either so I assumed it was like in the past where it says it's abnormal but isn't seriously abnormal. It turns out I've been referred to cardiology - why haven't I been told?! My Mum died of ischemic heart disease and the abnormalities in my ECG had something to do with ischema. I'm going to die in a painful and distressing way just like she did

I want to phone my CPN to see if she can clarify things a bit but I only saw her yesterday, plus it would obviously mean having to make a phone call.





I put it down on paper and then the ghost does not ache so much.


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Old 01-11-2019, 03:05 PM   #1811
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Oh that sounds terrible! You must feel so upset about the ECG lie, when was your ECG? The communication sounds absolutely dreadful. I definitely think it's worthy of a phone call to your CPN today and if you can get an appointment with your GP as well that sounds important.

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Old 01-11-2019, 06:17 PM   #1812
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Thanks. I didn't manage to phone my CPN, I will try on Monday. I had my ECG on something like the 7th of last month when I was an inpatient.

I feel like this is a definite, that I have serious heart problems, although of course I don't know for sure right now. I hope everything turns out ok because I really don't want to tell my brother. I've had chest pain but just considered it muscular since everyone was saying that my ECG was fine. They want to let me die. It's fine but it's not fine for my brother. I can't let him watch me die anyway. I'm dying young and that's why all of my purpose was used up early on. I might try and phone crisis and hope I get through to someone I'm comfortable with. I miss good self harm even more at times like this.

In my A&E notes there are parts where ambulance people have queried if I have actually overdosed. I wouldn't waste NHS resources and pretend I had. One part said something about how there was no evidence of the bottles and that I had said I had hidden them but wouldn't say where. That isn't something I would say, if I did I must have been totally out of it. People read notes and think they are facts. A note I've seen previously about me 'seeming cold' was there but I'd argue that the notes seem cold, not me. I hate the style of writing, it's so harsh and impersonal.

I'm upset by how my notes read in general. People write out my life and I don't get a say about how it is represented. Other people can read them and judge me based on what they believe is the truth of a professional. I hate my diagnosis especially. It invites people to be cruel. People hunt through everything I've done and try to find something to force a negative light on. I don't want my life and my personality to be communicated inaccurately through judgmental and cold medical notes. They don't reflect me as a person at all. I should maybe discharge myself from all services just so there are no more notes written about me. Even a very small thing, my support worker wrote that she phoned the service where my key worker is to see if I had went to the walking group and she wrote that they said don't have a walking group in my area yet. So that looks like I was lying and that's what my support worker will have thought, even though the walking group has nothing to do with that organisation it's with another organisation which was my support worker's mistake. But I am made to look bad as always.

I have been such a waste of a life.





I put it down on paper and then the ghost does not ache so much.


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Old 01-11-2019, 06:39 PM   #1813
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I can completely understand why you'd be very worried about the cardiology referral. I do think it's worth calling the crisis team to talk about these feelings and also look at alternative possibilities than there being something seriously wrong that can't be treated. I can imagine it's been a huge shock, though, and I know how hard it is to think things through. It might also be helpful to think about any ways you could distract for periods of 'respite' at the moment, like crafts, Netflix, reading, anything that captures your attention.

It must be hard to read those things in your notes. I would hate to read mine, I think I would find a lot I didn't agree with over the years, but I do take some heart from knowing that many staff who know me know me, and I imagine that the decent staff who know you will know how much you shine, how caring and intelligent you are and how much more complex you are than any diagnosis.

I know that's no reassurance when there are shit staff who judge you based on notes and, at some times, may even have their own stuff they're projecting. But it's easy to see for most of us how much more you are than notes and labels.

Sorry this was incoherent!

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Old 01-11-2019, 06:57 PM   #1814
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^ I think that was a very coherent reply and I couldn't agree more.

Lindsay, you are so much more than medical notes and a diagnosis. Everyone here and everyone that matters can see that. I hope that goes at least a little way in helping you realise your worth. <3

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Old 01-11-2019, 07:19 PM   #1815
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I mostly agree with the others.

I've found for myself at this point that if I trust the people I work with, reading my notes seems less important, as I know the people I am working with believe me and want to help me, and that is what matters.

I find for me that I put a lot more value in reading my notes when it was in situations where I didn't trust folks and they didn't know me well. I think those notes are less likely to be an accurate assessment of me, given that, to be blunt, those are abnormal times and times when I am particularly unwell. It can be super upsetting to read those things, and I guess the point I'm trying to make is that I bet if you read notes from someone like your CPN who does know you well, that they might read totally different and be not quite as upsetting.

You were in hospital a short time, and had such short interactions with these providers. Why does their notes and opinions of you matter so much?

Also hope you can find out about the ECG because that is definitely scary. I will say, I've had weird ECG readings in the past but been told that depending on the sensitivity of the machine, it can always read a bit off. So the machines saying something abnormal might be due to machine calibration error, not so much due to actual abnormalities. That's often why they don't show you the results as soon as they get them. Because it takes a trained human eye to know what's right and not.



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Old 03-11-2019, 10:56 AM   #1816
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Thanks everyone.

I haven't yet spoken to anyone about the ECG. Last night was really awful with weird chest feelings and I had no idea what was due to me panicking and what might be due to something else. I have weird chest feelings often but never considered them to be anything serious. I was awake in bed for ages thinking, should I phone NHS 24? Deciding I'd phone if I felt one more weird feeling and then deciding not to because it was night time and I was exhausted (stupid excuse). I'm trying to think that I've had these feelings for a while and nothing bad has happened, plus if it was something mega serious on my ECG they would have done something by now.

I've realised that they didn't give me all my hospital notes, they just gave me the ones that the health centre has access to so I'll need to request again to get the notes they wrote for each shift. I know it might be a bad idea but I'd rather see what has been written about me. I want to know what other professionals will be reading and check if anything is very badly wrong that needs changed. I'm so sensitive to anyone thinking anything negative about me, I care about the opinion of absolutely everyone. I think it's because I hate myself and those feelings are really strong and if I imagine other people having those feelings towards me it's upsetting because I don't want people to think such awful things about me. I equate anything negative with people hating me. I just wish notes would be more accurate and maybe even discussed with me before being written so that people who don't know me get a clearer picture of me from reading my notes rather than the opinions of others. It's the way of writing in general I don't really like too, and I know that's a standardised way that people have been taught to write notes and they use specific terminology so I know it's not unique to me or whatever or can be changed.

I don't think I should phone my CPN tomorrow because it's Monday so she might have stuff to catch up with and other people might phone her. She gave me an appointment in a couple of weeks just before the gym group again and I'm thinking of asking to change it to another day because having an appointment just before the group actually makes it harder to get to the group. I really need to get back to the group and stop being a failure.





I put it down on paper and then the ghost does not ache so much.


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Old 03-11-2019, 05:17 PM   #1817
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Don't request more notes. Just don't. It's just more things to be upset by and do you really need that right now?

The notes aren't intended for you to read and as such aren't filtered or explained in an understanding way as they would be if it was necessary to communicate their contents to you. Sometimes people write crap things in notes because they are a crappy person or they are having a crappy day or someone is being crappy with them at the time of writing. You can't ever fully know what someone is thinking about you and you have to accept that. Reading the notes only gives you a snapshots of their thoughts at that particular moment, without any context or ability to gauge the tone. And to stress again, the purpose of those notes isn't to inform you what their overall opinion of you as a person is, but to quickly convey details of a situation or incident to another professional, not to give you a summary of whether or not they hate you. And there are always going to be people who judge you, don't like you or who think you're a liar. Knowing about it isn't going to make you feel any better.

I feel a little queasy thinking about what I'd see if requested my medical notes. So I know I have to steer clear. I can't change that the nasty bits exist in some files somewhere (no one's going to go back and edit old notes based on my version of events) but I can change whether or not I needlessly make my day/week/life worse by reading them.



We may not see eye to eye, but we can respect each other's opinions and find the truth in them.
Perhaps in those honest conversations, instead of demonising each other,
we might see each other as imperfect humans, doing our best. ~ Jodi Picoult


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Old 03-11-2019, 06:56 PM   #1818
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Thanks. I know I shouldn't keep requesting them, I should have learned that a long time ago but I feel like I should know what people are writing about me.

I don't know what to do about the anxiety vs heart stuff thing. The only options I have for getting advice right now are through phone calls, either to crisis or to NHS 24 and I don't really feel able to phone anyway. I could talk to the pharmacist tomorrow but what if the things I'm feeling are serious and can't wait until tomorrow to be seen to? I know people aren't allowed to give medical advice so I'm not asking for that. But I just don't know what to do. If I phoned NHS 24 they'd hear the key words 'chest pain' and might have to send an ambulance and then I might have wasted resources. I wish I was brave enough to phone crisis just to get the advice of another human.





I put it down on paper and then the ghost does not ache so much.


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Old 03-11-2019, 07:14 PM   #1819
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You've been getting the same pains for a while though, haven't you? If it's been going on a long time then I'm sure you could wait until tomorrow to speak to the pharmacist without anything serious happening over night.

That's how I'd look at it, but I am a massive procrastinator. If you need to be seen tonight then you need to be seen. It won't be a waste of resources.

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Old 04-11-2019, 10:07 AM   #1820
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Thanks.

I didn't speak to the pharmacist and I'm too anxious to phone my CPN. I am one huge failure. I'm telling myself that if it was something serious I would hear from cardiology quickly but the thing is I've never mentioned that I have chest pains/palpitations etc so they might think my ECG is abnormal but that I have no symptoms. Why can't I just make a phone call?!

I'm supposed to be trying again to make it to the walking group today too but it's really wet and I want to make sure it's on but there is only a phone number and again I don't feel able to call. I will try to just turn up but I'm not even exactly sure where the church is. I'm completely pathetic. Plus I can hardly walk and talk at the same time, I can hardly talk anyway because I am rubbish at socialising. That's another worry about my heart, the breathlessness when walking and talking. I was breathless just taking washing out of the machine and putting it in the washing basket yesterday. I'm noticing more and more things.

I wish I wasn't so anxious about everything in life and could easily make phone calls.





I put it down on paper and then the ghost does not ache so much.


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