I saw L this morning. It was quite a difficult appointment for me. It was constructive, I feel like we talked about quite a lot. But some of it was hard, and I wasn't expecting it to be. We started off talking about my sister, which was ok - L asked about the whole Facebook scenario, and how she still isn't speaking to me, and there is also an update on that. My mother found out on Sunday, via our old next door neighbour, that my sister and family are going to Scotland for Christmas. My sister hadn't told my mum this, who was fairly understandably quite hurt, as she has still been spending time with my sister as usual, and there is no reason for her not to have told her. My mum wasn't upset about my sister going to Scotland - that is where her partner is from, and so it is something they should do at some point - the reason they never have before is because my sister loathes her in laws. But seemingly not as much as she loathes me. It was the fact she hadn't even told her, and that she had heard it from our old next door neighbour. She spoke to my sister yesterday and asked when she had planned on telling her, and my sister replied when she had asked. Since only 2 weeks ago my mum had asked my sister what the plans were for Christmas I thought this was unfair, and typically immature. Last year we (my parents and I) went to my sister for Christmas Day, despite my dad and I much preferring to stay at home, and so had things been 'normal' this year, they would probably have come to us Christmas Day, as we tend to alternate since everyone prefers to be at home, but seems to want to be together. But my sister made some dig at my mum saying that she knew we wouldn't have gone there for Christmas Day, even though apparently parents are supposed to go to their children for Christmas if said children have children. I don't think this is true anyway - I think it can work either way, and there are actually 4 of us - my sister is not an only child, and I am not sure why she feels like Christmas should be arranged to suit her every year. But she does. So since we wouldn't be going there (partly because we went there last year, and partly because I don't think I would have been welcome anyway and my parents wouldn't have left me at home alone on Christmas Day) she decided to go up to Scotland instead, but not bother to tell my mother. I have to say, I do sometimes marvel at how selfish and inconsiderate my sister can be.
Anyway, then we talked about my care plan for a little while. Apparently it needs updating, so we briefly discussed what needs changing. I am pleased to report that the idea of telling me to go to A&E if I am feeling suicidal is being taken off. That was such a shit idea, implemented by my previous care coordinator, who insisted on it if I even mentioned the word suicide. It has proven to actually be quite unhelpful, because I already know that is an option anyway, so it being on there adds nothing to it, and is something I would be incredibly unlikely to do anyway. However, something I am slightly more likely to do, in that I have done it before through choice, is calling the out of hours number. This is not the crisis team. You can only see the crisis team if you are referred - there is no direct access to them (good system for when you are in crisis isn't it?) This out of hours number goes through to the local psych ward, and one of the nurses there will talk to you. However, the last time I called it I spoke to someone who said that there was nothing they could do, and my care plan said to go to A&E. This was the middle of the night, and absolutely not something I was going to do, and not even what I needed. I needed to talk through my feelings with someone and hopefully get some suggestions as to how to cope. But because of my care plan saying to go to A&E that was what they had to tell me to do. So hopefully with that erased I will be able to actually have a conversation with them if I need to in the future - it does already say that I sometimes need to talk to someone, and obviously in hours that will generally be L, but that out of hours I can call them to talk, but she is going to make sure that is made more obvious, so that they don't try and just fob me off onto A&E. Obviously I have now got a date through for the psychology assessment, so that will need updating. I think there were various other points too, but I believe they were the main ones.
We talked a bit about periods when I am in crisis. She explained more fully her reasoning for not wanting me to be involved with the crisis team, and also hospital, although we talked about that to a lesser extent. What she said was certainly not a revelation to me - it is something I have picked up on myself, and I am sure that many other people have too. Basically she said that she feels like the crisis team see mental illness in very black and white terms (does that mean they are all Borderline I wonder?), and that they will take referrals for people with psychosis, or clear Bipolar, for example if someone is very manic, seriously, but that they pretty much write off all other mental health problems as not needing their attention etc. She said she is worried that their attitude can do more harm than good, as they can be very invalidating (which I have experienced, and I know many other bloggers have too) which can actually result in making you feel even worse. She said they often just see people once to assess them, judge them as not actually being ill enough to need their help, and then refer them back to the CMHT, despite their care coordinator, who obviously knows them best, feeling that they need crisis input. Obviously my diagnosis being BPD, rather than just depression makes this even more of an issue, as there is so much stigma surrounding BPD still, and she said that she sees it an awful lot, both on the wards, and in the crisis team (and I have certainly seen it in other members of the CMHT) and that people with BPD are still so often dismissed as being attention seekers and all the other old stereotypes, and she thinks it can be very detrimental. I understand this, and I did suspect this may have been part of her reasoning behind not referring me when I asked a few weeks ago. I said that obviously during office hours, and when she is there it is ok, because I can call and talk to her, but out of hours, or if she isn't there then it is very difficult as there isn't really anyone I can turn to for support. I think that unfortunately that is just a failing of the system, and there isn't much that can be done about it though. Obviously I can call the duty worker at the CMHT if she isn't there, or I can call the out of hours number, but I think that talking to someone who doesn't know you always has limited usefulness, as really they are fairly limited to suggesting the usual patronising things like going for a walk or having a bath. I also told her that I felt like I needed some help with coming up with things I could do when in crisis. Not when things were starting to slip, but when I am really at rock bottom and have no concentration or motivation, and can't do anything. Not calling people, or any outside help, but things that I could do myself. I find it very difficult, because I just lose all ability to focus on anything, and so distracting myself is almost impossible. I try and write how I am feeling to get it out of me, but that isn't really a distraction - it is just something to try and sort out my thoughts. When things are that bad reading is out of the question, and even watching TV or listening to music are more than I feel able to do. But one of the things I am consistantly asked if I speak to someone other than L when in crisis, is what have we discussed as distraction techniques for that, and I don't think we have. It obviously needs to be really very basic stuff, as my IQ just seems to nose dive when my mood really crashes, and I don't have the concentration to do anything for long. She said that she will try and come up with some things, and has asked me to as well, but I am struggling to really think of anything, so any suggestions would be welcome. Things that don't involve much energy, concentration or motivation, and yet can still provide something of a distraction. Answers on a postcard....
I also mentioned medication, as I feel that whilst I had very bad episodes whilst on medication, overall I have struggled more since I haven't been taking anything, and this last crisis period was particularly difficult, and was probably one of the lowest I have ever experienced. Which was perhaps something of a saving grace, as I was too exhausted to act on my thoughts, despite the strength of them. But my head being so noisy was very difficult to cope with, and it was just really hideous. So she is going to speak to Dr E about it. I suspect Dr E will stick to her view that you don't medicate people with BPD, but I quite clearly have depression as well as BPD, and so I think medication for that would be appropriate. Whether or not it would help or not I don't know, but I feel like I need to try something.
I can't remember how, but we somehow got onto the issue of my childhood. I was going to go into what we talked about now, but I am actually feeling like I want to talk about all of my childhood, not just what I discussed with L today, and so I am going to continue this post tomorrow, as this is already very long, and although I have started writing about my childhood, there is still an awful lot to go, and I think it requires a post to itself. So I will finish this tomorrow. I will talk about my childhood generally, and also what I discussed with L, which was the part of the session that I found quite difficult. So to be continued.....
Christmas love to you all
3 weeks ago