Firstly, thank you all so much for the comments on my last entry. You were all so supportive and caring, and it really did mean a lot. Quite a few people suggested I should be in hospital, or go to A&E, and a few people asked why my care plan says to avoid being admitted. That is kind of difficult to explain, partially because I don't completely understand myself. This entire paragraph will attempt to explain, and is long, so please skip to next paragraph if this doesn't interest you! I do know a few reasons why L wants to avoid it, and therefore put it on my care plan, and I can completely see where she is coming from in that sense. There is still a lot of stigma surrounding BPD, and this is apparently pretty rife both amongst the hospital staff and the crisis team staff. I haven't been in hospital since being given the BPD diagnosis, so can't comment on that, but from my experience I would agree that the crisis team seem to have a poor attitude towards PDs - when I switched GP a couple of years ago which put me back under this trust for Mental Health, I was seeing the crisis team (the GP referred me) and they said they would continue to see me until I was taken on my the CMHT, which was likely to be a few weeks away still. Then one day they had contact with the old CMHT, were told I had a PD diagnosis, and when they visited that day their attitude was completely different, and they didn't see me after that, despite it still being a couple of weeks before I was due to see the CMHT. I can only assume that was down to seeing a PD diagnosis, rather than the depression etc the GP had discussed when referring me. It didn't seem to matter that I was still feeling very suicidal and had attempted suicide only a month or two earlier - they just dropped me. So I could see that attitude in the crisis team then, and it is apparently equally bad amongst the hospital staff. During summer 2009 I ended up presenting at A&E three or four times due to suicidal thoughts etc. Despite making my feelings and thoughts known clearly, I was sent home every time, after perhaps a 10 minute chat with the crisis team, who would generally then speak to my mum and tell her to make sure I didn't have access to any tablets or dressing gown cords etc, as I was suicidal. One time she asked them to admit me as she said she couldn't cope, but I was still sent home. At that time I really was not well at all - I was possibly a slightly lower suicide risk than I have been at some other times as I was just so confused etc. I wouldn't go anywhere, even outside of my room, without my teddy bear, as I thought that he could protect me and I thought people wanted to hurt me. I didn't trust anyone, even my family. I wouldn't put the teddy bear down under any circumstances. I spent the whole time crying, I was possibly a bit delusional, and I was also having suicidal thoughts. I sat there crying, clutching my teddy bear (yes, I was 23) telling them that I wanted to die and that I was going to kill myself but that people were trying to get me. I was still just sent home with no follow up, despite my mum asking them to admit me. That was the last time I went to A&E, and the last time I saw anyone from the crisis team. I have no trust in the crisis team - I don't feel like they care if I live or die, except for any inconvenience I might cause by dying, but luckily for them I have a BPD label, and therefore if I did successfully commit suicide after seeing them they wouldn't have to explain anything too fully, because they can always say with BPD that there is constant risk and therefore you can't be kept safe, or something along those lines. So essentially my diagnosis is a major reason why L doesn't think hospital is appropriate - not because she has a problem with it, because she is one of the few professionals I know who gets really angry about the way people with BPD are treated in services etc, but because she doesn't want me exposed to the type of attitude that so many of the acute services staff do have. I think that is a valid point, and I can understand the reasoning behind it. Another reason is that she thinks that the vast majority of times hospital actually makes people worse rather than better. Therapeutically it has no value, as there is no therapy there, and so unless it is essential for medications to be altered or something, she thinks it rarely helps. Again, I have to agree that there is no therapeutic value - it is essentially somewhere to keep you safe until you can be safe at home - for that reason I think it can have value, but she has pointed out in the past that if someone is determined to kill themselves then they will do it wherever they are, and that people do successfully commit suicide in hospital. Another reason is that she thinks it is really important that I get through bad patches without hospital or crisis team intervention, to see that I can do it. She doesn't want me to get reliant on hospital, and feel like I need admission every time I feel suicidal. Again, I think that is a good point, and it is certainly something I have seen happen, both with friends in real life, and on blogs I have read. If you don't start learning to cope with the feelings outside of hospital, then you never will be able to, and she doesn't want me to be a revolving door patient. I really do understand where she is coming from with this - I don't want that either, and I know that even in the past year for example, there has been more than one period where I have felt bad enough that I haven't felt safe, and other care coordinators perhaps would have had me admitted, and yet I have got through them. However, I also know that if I look back at my history, there have been two genuine suicide attempts, three years apart, and both times I was honest about how I was feeling beforehand and tried to get help, but couldn't. There have been other times when I know I would have acted on the thoughts had I not received the extra help that I had at the time, whether that be from the crisis team or hospital admissions. So I suppose that is a kind of risky strategy in that most times, yes, I will cope without hospital, and that is obviously a positive thing, but there will also be times when I can't, and if more help isn't available then that could lead to a suicide attempt, which could of course kill me, as that is the intention. So basically they are the reasons why my care plan says to avoid admission wherever possible.
For those who suggested that perhaps I hadn't been able to explain fully how bad things are - I do think that is something that is difficult to do, and that I am not always able to do in person. However, the day before I am due to see her I always email her everything I have written since the last time I saw her, which is primarily what I write on this blog. It is edited slightly - sometimes I will write things in what I send to her that I won't post on here for various reasons, and there are things I write on here that I don't send to her. But not anything to do with my mood or thoughts - all of that remains unedited, and so essentially she gets to read everything that people who read this blog read. The things I don't send are for example if I have discussed what happened in an appointment, I don't bother sending that to her because she already knows. In general though I am very honest, and I do send her things that I find difficult to imagine her reading, which is why I try to edit as little as possible, or I would end up cutting a lot of things out, so for example I leave in things like my views on the mental health service, and when I don't feel like I am getting enough support, and when I feel like she has let me down or isn't there for me etc. So it is very honest, and is difficult to do, but I know that the more she knows the more she can help me. So whilst I may not always express quite how bad things are in person, she reads virtually the same as all of you read, therefore I don't think I can really make things any clearer. Seemingly what I write here is enough to concern people at times, judging from comments, and she sees the same thing. I think the fact that a lot of times I have managed to cope, leads her to have more belief in my ability to get by than I have, and means that even if I say outright that I can't cope, she generally believes that I will manage to. I appreciate that she has that belief in me, and I am more pleased than I can express that she isn't like my old care coordinator, who sent me to A&E if he thought there was any chance of me acting on my thoughts, and also insisted on breaking confidentiality and speaking to my mum if I mentioned the word suicide, as that means I am far more honest with her than I could ever have even considered being with him. However, it does sometimes mean that there are times like now, when I don't feel able to cope, and yet I am left without any support, and I honestly don't know how to deal with that.
A couple of hours after posting last night, when I had read the first few comments on the post, I decided to email L. I didn't know what to say. So I said that. I then rambled a little about feeling like things were getting worse every day, and I really felt like I needed more help if I was going to get through this, but that I didn't know what or if it was an option, but that I felt like I needed to ask so that I could tick it off in my head as trying to get help, and then went on to say I had attached what I had written in the last week (basically sent everything from last Wednesday to last night's post - I think the only edit was describing what happened in the appointment with the psychologist, because she will already have been told about that. I left in everything else, including all the stuff about not feeling like I was getting enough support, and that I feel like services assume I will just get by because I usually do. I then apologised multiple times for being a nuisance and said how desperate I feel, and I think that was about it. Except it somehow took about three times as long to say. Just add some more confusion in and you get the idea. I then sent it and within about 10 minutes wished I hadn't, as it seemed pointless and kind of scary, even though I trust her. I nearly sent another email telling her to ignore the last one, but I thought she would probably read it anyway, and that it might then look a bit manipulative or something so send a second one saying not to look at the first one. So I left it. I haven't heard anything. She didn't reply or phone. I don't know if she wasn't in work, or if she was too busy to contact me, or if she didn't see the point or what. But at least I have tried. She now knows exactly how I feel, or as much as I feel able to put into words anyway, and I have actually directly said that I need more help. If I can't have more help, which I suspect will be the outcome if she does get back to me, then at least I have tried, and so kind of feel like I have done everything that I can and explored all options, which is what I always say I feel people should do if possible. But I have tried.
Dear Mama, on uncertainty
2 weeks ago