Tuesday, 22 February 2011

Response and appointment

I am not sure what to say or where to start. Actually, I think I will begin by addressing the comments regarding the previous post. I was going to reply in the comments, but it would have ended up ridiculously long. Firstly, I did not intend to cause the kind of tension that I have done. As usual, I was just writing what I was thinking, because that is what I do. I should point out that the original comments I quoted in my post were not made anonymously - I just didn't name any names as I didn't wish to cause that person to receive messages from people defending me. Thank you for all of the comments, regardless of what you said. I have never tried to censor the comments I receive on my blog, or deleted comments I dislike, because I believe everyone is entitled to express their opinion. For those of you who said you don't find me self pitying, thank you. I don't mean to be. And actually I don't consider that I am particularly. Yes, I feel shit, and I will write about that, but I don't think of it in a 'poor me, I feel worse than anyone else' way in the least. I feel shit, that is a fact, and I will write about the feelings I have, because I have been told it is good for me to express how I am feeling in writing, but I don't actually feel sorry for myself - I am actually more likely to assume that things are my fault, for example that if I am not receiving as much support as I feel I need, that it is my fault for not asking properly or something. I do try and take responsibility for my thoughts and feelings when I can. But I can also see that talking about how I feel all the time can come across as self indulgent etc. But surely that is what blogs are for? This is a place for me to express how I feel and what I am thinking, and by nature that is self indulgent, but that is why this blog exists. But I do appreciate all of those of you who showed concern and cared enough to post. Lexie, thank you for your comments. I just wanted to say regarding the second, although I have a BPD diagnosis in that I meet the criteria, I have been told by multiple professionals that I am not a 'typical' Borderline - I am not attention seeking - if I wanted attention I know exactly how I could get it, and I do not do those things. This is very much a depressive episode, and L agrees with that, and I believe that overall the depression is the primary problem rather than the BPD. I am not saying anything for attention. I don't feel like I get ignored when things are going well, and in terms of treatment from professionals, I actually get less support when I am feeling like this than when I am able to work more productively towards recovery, so feeling like this is certainly not a way of trying to get attention, and is not a trait of BPD that any professional has ever claimed I display. I am not sure if there are one or two anonymous posters, so I will reply to the actual comments. First anonymous comment, I want to address a couple of points you made. You said 'This you can’t go out for a walk or eat is crap. You are fucking depressed not dying of a serious illness. You have a pair of legs, arms and the ability to get up and go for a walk.' At no point did I say I was physically unable to eat or walk. But actually, you can be stopped from doing things as a result of mental health problems just as you can be stopped from doing things as a result of physical health problems. As I explained, I have problems with anxiety, which makes going for walks very difficult. And I have an eating disorder, which makes eating regularly very difficult. You said you have been reading for a long time, but I am slightly confused by that, as several things you said would imply you know very little about me. My parents do not, to my knowledge, know about this blog. The disclaimer at the top is there in case they happen to find it. If you read back a couple of weeks you will see I talked to them about how bad I am feeling, so they are aware of that though. If you think what I write is garbage and attention seeking though, please just don't read. And please, please don't be rude to other commenters on my blog. My Black Fog is a lovely, caring person, and I thought your comments to her were rude and upsetting - she is struggling enough with her own problems, and I appreciate that she even takes the time to comment on my blog, but calling her a 'jumped up little turd' was rude and uncalled for. To both the first and second anonymous comments, hospital is not an option, because my care coordinator does not believe it is helpful. That is not my decision. I do not have the option of having myself admitted to hospital because I am feeling suicidal, as it doesn't work like that. I have told literally everyone - my GP, the crisis team when they would see me, and L how I feel. It makes no difference. For some reason I am unable to get any help. I am not writing here in the hope that someone who knows me will contact anyone on my behalf, as I have already told all the professionals involved in my care exactly how I feel, and it has made no difference. Friends have in fact offered to do so, but if the professionals aren't taking any notice of me, I very much doubt they will take any notice of my friends either. I have tried so, so hard over the last few weeks to get help, and it hasn't happened, and that has left me feeling utterly alone and hopeless. Some see that as being self pitying evidently, but I have been fighting as hard as I can, to get through the thoughts, and to speak to someone who may be able to help me, but it hasn't made any difference. But if you read my posts over the last few weeks you will see that I have tried desperately hard to get help, despite not always feeling like I want it.

If you find my writing self pitying, irritating, garbage, etc etc, I am now going to go on and write more of what you will probably consider drivel, so I would probably suggest you stop reading now.

My appointment this afternoon felt really quite hideous. I don't know what to say about it. It was much as I expected it to be really. L started by asking how I was, although obviously she knew from speaking to her yesterday that things are not good. She asked me to rate my mood from 1 - 10, which was interesting, as although many people have asked me to do that before, she never has. She said based on how I was feeling right then, if 1 was feeling normal, ok, etc, and 10 was the worst I have ever felt, how was I feeling. I said a 9 or a 10, and she said to pick one, and so I said 9, as although I was feeling hideous, there have been points in the last few days and weeks when I have felt even more desperate, so they would be the 10s. But overall I would rate this whole episode as a 10 - it is equally as bad as I have ever felt, possibly more so. She asked what I wanted, and I said not to feel like this. She agreed with that, and asked how I thought that could happen. I knew it would frustrate her so I was hesitant about answering, but I said that it felt like the only way I could stop feeling like this was by killing myself. She said that she didn't want to talk about suicidal thoughts as there was no mileage in it and it wouldn't help or get me anywhere. She said their job is not about preventing suicide, and that it is very rare they will actually take any steps to try and stop someone killing themselves, and that there was no point in talking about it. I said that I knew that, but she had asked me, and so I was just telling her my honest response. She said she is finding it difficult because she feels like I want to die more than I want to get better at the moment, which I explained is certainly true some of the time, but at other times I really want to get better but just don't feel able to. She talked again about what she had said on the phone yesterday - that I needed to get some routine in my life, and work on getting my sleep pattern sorted, and eating regularly, and finding things to occupy me and that I could look forward to. I said that I agreed I needed more structure, and that if I was in a slightly better place than I am now then I definitely think that would be the way forward, but at the moment I was finding such small things, like getting up to go to the toilet, and getting dressed, enormous mountains, that just took all my energy. I also explained that I was finding it impossible to distract myself at the moment - that I had tried everything I could think of, but nothing helped, but she said she didn't believe nothing helped. She asked if I was saying I couldn't do it, and I said that at the moment I didn't see how I could, when such small things were so exhausting, but that I could see that was what was needed. I can't remember exactly what was said - she talked a lot, but essentially what she was saying was that I needed to make a decision between doing what she was saying, and being discharged, and if I couldn't do what she was saying then she would discharge me. She sat talking about planning activities and I just had sheer panic going through my head, and I honestly don't feel able to do what I am being asked to do at the moment without any support, but I couldn't say that because it would result in me being kicked out of mental health services, which she reminded me would also mean I would no longer be on the waiting list to see the psychologist, which she thought would be a 'shame' as that could help. I found during my appointment that the suicidal thoughts were getting stronger and stronger, as I am feeling so awful, and feel desperately like I need help, but am being told that the only way I can continue to receive help (fortnightly sessions) is by doing things that I just can't do whilst I am feeling this bad. I couldn't be feeling more desperate or hopeless - I have tried so hard to get help, but it is not forthcoming, and I can't do this on my own at the moment. L spent about 45 minutes with me, rather than the hour to hour and a half that she normally spends with me, made an appointment to see me in a fortnight, and said she expected me to have made a decision and thought about what I could do by then. After feeling very numb and blank all session, I burst into tears at the end, and she opened the door and said goodbye. I went and sat in the most private place in the waiting room, where nobody would see me, and just cried for a while, as I couldn't face leaving the building so upset, and I was just feeling so desperate. I have tried so hard to get help, as I really feel like that is the only way I can get through this, but it hasn't worked. I genuinely do understand what she is saying I need to do, but I do not understand how she is expecting me to do it, feeling like this, with no help or support. If she had said I needed to do that, helped me come up with exactly what I needed to do, and arranged some type of support to help me do it, for example seeing the crisis team for a little while to help get things on track, then that would have been an entirely different matter. But just to be told I have to structure my days, on my own, with no help, and with no support for another two weeks, when I am feeling so exhausted and depressed that just getting out of bed is an immense struggle just feels impossible. To be honest I wish that I had listened to my instincts yesterday and not gone to the appointment today. I didn't think it could make me feel worse or more desperate, but it has.


  1. People can be mean sometimes. I think people should educate themselves instead of just talking. I get the same thing because I have the same issues.

    Everyone deserves to be loved and paid attention to, and you're no different.

    Stay strong, and I need to take my own advice. I'm such a hypocrite!

  2. I get the same way. Some of my husband's don't understand. I get through a day, then exhausted the next.
    I,currently,only talk to my med clinic nurse. I rite my blogs too. People(my family) take what I say to heart. I'm hurting and lost when left alone all day.

  3. Bippie,

    How are you able to have the lead in a musical? How does that work, in the scheme of everything else that you are unable to do?

    What would happen if your parents made you move out and get a job? I know that they won't, but what happens when they die? And please don't say that you are going to die before them. Suicide is not an option. its not.

    And aside from the crisis team, what would more support look like, in your day to day life? I recall it was very stressful when they came the last time. What if someone made up a realistic manageable schedule and docked you, if you did not adhere to it and rewarded you for following it? Its probably not possible, but that is the type of treatment that my son is getting and its very tough, but it really works. I realize now, that a lot of the "normal" girls who don't have autism actually have BPD and its being addressed in their teens. I have noticed that while my son has autism, that a lot of his symptoms parallel those of PD, but are coming from a different place. What if it was just one thing, that changed? Forget about trying to change everything all at once. That would be completely overwhelming for anyone, but I think that L has a lot of confidence that you can effect some changes for yourself that may help you, to move forward.

    As I've said, many times, I see a beautiful, talented, very lovely young woman with so, so much to offer the world... and the record is stuck...And I do know that you understand this and I did not say that you were doing it to garner sympathy... not at all. But, still, it does and that attention may be helping to fuel the depressive feelings. I'm very sorry for your suffering.



  4. Re: the arsehole commentators - great response. I've had bullshit whinging about my "self indulgence" or my inability to cope despite "not being the only person in the world who has been raped," etc etc. Even one a week or so ago telling me I'd made it all up. Fine; people are entitled to their views. But as you so rightly say, if our words are of such great annoyance to said individuals, then THEY DON'T HAVE TO FUCKING READ our words. If they have nothing better to do with their time than patronise, presume and troll, then they really should get lives.

    As for the appointment, I wish I knew what to say. I know that L is 'nice' and has generally been supportive of you, but every time I read about your latest interactions with her, I feel frustrated with how she responds to you (so God knows how awful it must be for you!). I know what she's getting at, but as you know all too well, it's easy for her to say that and mightily difficult for you to implement her advice.

    I just wish there was something productive we could do for you. There's not, but we are reading, supporting and wishing that things will soon be different.

    Much love and hugs

    Pan xxx

  5. Lexie, at the moment I am very bad as far as the show is concerned. Luckily I have a week off rehearsals this week. Last week I managed to go to both, but the week before I skipped one. I know none of my lines, and I am dreading it. The reason I do it is because I am encouraged be everyone, particularly L, to keep it up, not because I am enjoying it. I find rehearsals incredibly draining, and I generally find there is a dip in my mood following a rehearsal as it saps all of my energy. It has only been two rehearsals a week for the last few weeks, and as I said, I missed one of them. But they do drain me a lot.

    I am not financially dependent on my parents except for accommodation. If they kicked me out I would not need to get a job - I am eligible for sickness benefits (which I currently receive) and if you are getting those then you can also get housing benefit to pay for rent, for as long as it is deemed that you are unable to work.

    And yes, the crisis team visiting was stressful, because they have a lot of power in the mental health system in this country, but I also felt like it could help. At the moment I feel like it would be impossible to follow a proper schedule without support, but if that were in place then I would have no objections, providing it was reasonable. But at the moment I cannot do that alone.

    I still do not feel as though attention from feeling like this helps fuel the depression. Yes, I get comments from people online who care, but as I said, I get less help from L when I am like this than when I am able to participate properly in therapy, and I can assure you that no amount of attention would make it worth feeling like this. I am not even terribly interested in attention to be honest - I would be writing what I am regardless of whether anyone was reading or not - in fact when I started this blog I wasn't expecting to get nearly as many readers as I have. Attention is not part of what is going on. As I said, if I wanted attention I could easily get it it - I could tell people I know in real life about this blog. I could take overdoses or self harm and present at A&E (the type of attention seeking associated with BPD) - there are multiple things I could do if I wanted attention. I don't. I just write how I feel to try and clear my head. If people respond to that then so be it, but it is not my reason for writing, which is one of the reasons I am considering stopping publishing any posts for a while at least. I don't want people to think I am writing for sympathy or attention, because I'm not. I'm writing for me.

  6. I have read your post or rather scanned over it to some extent.

    I do actually sympathise with what you are experiencing and currently going through, but anyone who is depressed whether it be recurrent depression or related to another more complex mental health problem needs to help themself.

    I was going to question your musical performance but Lexie beat me to it. I should imagine the DWP would be curious about the whole performing and attending rehearsals in preparation for a musical, I have no doubt you are not ill and in need of benefits but last week you where able to go out, and this week you are saying that you can’t go for a walk, it coincides with your week off from rehersals,

    If L and the other people involved in your care are not actively helping then may I suggest you hand L your recent blog posts, maybe how you are corresponding what you are feeling is not coming across well, because from what you write you are very ill and in need of more support.

    As for name calling My Black Fog, maybe she is a friend but in my original posts I called no one, if someone has a go at me I will defend myself back, that is how life works.

    I wish you the best of luck, I truly hope you can get over this period of depression and feel better. Recurrent depression is an awful thing to suffer from, you can never tell when “the black dog” is going to come back and bite you again.

  7. I just wanted to say I've not been reading a long time but THANK YOU! for being so honest. I can't understand what you may be going through but I just hope that you find happiness whenever it may be :)

  8. Walks have been an issue for me for years. I live in a very isolated area, and if I walk I always get terrified that someone is following me, and get very anxious and paranoid. It is an ongoing thing, and L knows that. I can walk in a town, but I can't get to a town. It is very different to being driven to a rehearsal and dropped off outside, then picked up two hours later, which although I hate the whole time I am there, does not give me the same kind of anxiety that walking around here does. It is an anxiety thing that isn't new - walking around where I live is just an issue.

    L has seen my recent blog posts - I have written before how it was her who asked me to write, and so I write either in here or in a Word document, and then email her the Word document weekly, and the vast majority of the the content is the same - obviously I wouldn't email her things like my response to comments, but 90% of what she reads and what is on here are the same.

  9. Oh Bip, I am so sorry your appointment with L was so useless.
    On the doing more thing. I agree with you - you need more support to do it. I don't want you to push yourself too hard because that will just make you feel even worse. I read an excellent book on depression - Depressive Illness: The Curse of The Strong by Tim Cantopher - and he says that when someone is recovering
    The thing is that you're not even at that stage - you're severely depressed. You should be resting. OK, routine might help you, but depression is an illness and with time and rest it heals. I think you're feeling guilty about not doing enough, when actually, you should give yourself permission to do nothing at all for a little while.

    It sounds to me too that your main problem is depression, that BPD has nothing much to do with it at this point. I am still so angry for you about the 'care' you're (not) getting.

    Everyone has the right to an opinion, but I'm not sure they have the right to express it just anywhere and in any manner they like. If I didn't like someone's blog and thought they were an idiot I would...not read it. I certainly wouldn't leave abusive comments on the blog. I was just saying that I personally wouldn't allow that kind of comment, but everyone is different, and it's up to you.

    I know what you mean about blogging being for you - I said the same thing recently. That's OK. Keep on writing for you. It is healing.

    I am so sorry I can't do anything, hon, but I'm here if you need to talk. x

  10. Oh f&*( got sidetracked...! Um yeah on the recovery from depression thing, he says that when someone is in recovery from depression there should be a Hoover in the middle of their room, because you start Hoovering but feel exhausted halfway through, so stopped and rested. It made me smile because guess where my Hoover coincidentally was...
    Sorry, I know that's not the stage you're at...

  11. This is your blog and you're entitled to write what you want on it. You're being honest about what you're feeling and if people don't like it, well, nobody is forcing them to read.

    As for what L said during the appointment...ouch. That sounds really tough that you're being forced to make a decision between doing activities she suggests and being discharged. *hugs*

  12. I know you don't know me but I have been reading your blog for a while and can identify with so much. Depression is incredibly difficult to deal with and makes even the most simplest things like making it to the shower seem like an impossible task and it is hard for people to understand that at times - that you would rather feel dirty and yuck than spend five minutes in the shower is something that nobody can understand until they have been there. Don't let anyone bring you down, this is your outlet and you are entitled to write whatever you feel and whatever you want to write.

    I am thinking of you and hope that this depression starts to lift to allow some hope and joy back in your life.

    Thank you for sharing your journey with others like me, it truly helps to know there are other people out there dealing with the same thing

  13. I am not sure that Anonymous's understanding of depression is as good as they claim if they honestly believe that if you're unable to leave the house most of the time, any successful trip out must make you an attention-seeker who isn't doing enough to help themselves. People with depression have good days and bad days, as with so many illnesses. I'm also very disturbed by their reference to the DWP, as they seem to be insinuating that if the DWP knew that you could attend rehearsals you wouldn't be on sickness benefits. Sickness benefits are extremely difficult to get, and a lot of people who really need them get turned down. A twice-weekly rehearsal demonstrates that you have a hobby, not that you are capable of working all week - and by your own admission, you're finding it very difficult even to stick with your hobby.

    Personally I think it's good that you make the attempt to go to rehearsal - when I was very ill my CPN and therapist were encouraging me to do whatever I felt able to do, just to keep my mind occupied. You are doing the best you can with your acting and also with your blogging, and one day hopefully you will have work that you can do. You have to take it one step at a time.

    I have a good friend with a BPD diagnosis and I used to get pretty frustrated with some of the things that she said and did when she was very depressed, as she seemed to be paddling round in circles. I get the same feeling with some of your posts - but now I know that this is a good thing! You're still paddling, you're not sinking. One day I believe that you will get to where you need to go and you will feel better, but that can't happen all at once. You are doing your best and that's all anybody can ever ask of you. x

  14. Oh, and another thought - could supported accommodation be an option for you? I don't know where you live, but the Richmond Fellowship and Rethink have got supported housing placements all over the country, and there are some run by local authorities as well. That might help you to put the structure in your life. x

  15. Bip - I am a bit concerned with the way L is dealing with all this. It just seems to me that she is living up to the stereotype that mental health professionals just think people with PDs are being difficult and she's got some idea in her head that you don't need help and she doesn't seem willing to bend that. I think she needs to recognise she should be flexible with you. Something has to give.

    I'm particularly wondering about the setting a routine thing and her reluctance to use hospital. One of the advantages of hospital, aside from it keeping you safe (although it only does this to some degree) is it develops a routine and there are people to bully you into doing things. Maybe she thinks that you will manage the routine when you are there, but when you come out you won't keep it up? I don't know, but it does seem strange that she is so determined to keep you out.

    This could be very cynical of me, but I wonder if the care coordinators get their performance measured upon their ability to keep their patients out of hospital or without the crisis team! Maybe she is stopping you on purely selfish reasons?

    Comment is too long.. will post in parts:

  16. Crap.. my comment was long and blogger lost the second half and wouldn't let me post.

  17. What Harriet said... thinking of you... just still low on words.

  18. I am somewhat shocked at the comments left but reading them again today I think whoever left them is only deeply concerned for your welfare and trying to reach out to you, although not in the most conventional normal way.

    Having BPD and recurrent depression, I can relate to how you are feeling having been there many times. However anonymous has a valid point (and please do not be offended) you have to want to help yourself by taking small steps each day, although I realise how hard it is to get out of that vicious circle of feeling like you want to end it all.

    I cannot begin to imagine how hard it is to go out when you suffer from anxiety as bad as you do as whilst I have some experience of the condition it was for a short period during my time at college, and I struggled to get there and stay there.

    If it is a struggle to get out know could you perhaps not just start by spending a few minutes outside in the garden (if you have one) walking around it, I know it might feel stupid , but you would be getting some fresh air and over time it might help.

    I am sure L is supportive, but I can only echo what ITS says about her wanting to keep you out of hospital. Whilst I know, it is not recommended for people with BPD to be admitted into hospital, in your case you have recurrent depression and that needs support and help. It seems L is just seeing you for your BPD diagnosis.

    You are very much a welcomed writer in the blog world, the awards tells us that... people here come and read because they care about you and do not let some silly trolling comments make you think any different.

    Hang on in there girl, in time you will climb out of the black hole you find yourself in and start recovery, it is just a case of one day at time and in the mean time write and vent here as much as you like and feel free to call on your friends when you need support.

    Ms Leftie x

  19. I'm utterly disgusted with the way L is handling this. Get better or we'll discharge you? That's disgraceful - the most ill people are the ones who need more support, not less. If she doesn't know how to handle you she should either pass you onto somebody more competent than herself or admit you to hospital. Belive me, give me the opportunity and I will tell her this myself. Fell free to show her this comment. In fact, I hope you do.

    As for the commenters. You replied sufficiently, so I won't even bother. You are beloved by the vast majority of your readers, so please don't stop blogging because of those people.


  20. I'm sorry your appointment was so distressing. Although I agree with L that you need to take these steps to help yourself, I don't think threatening to discharge you and take you off the waiting list to see the psychologist is appropriate and I'm quite shocked that she would say something like that. I assume the psychologist is going to provide some kind of therapy and that you're not getting any at the moment, and therapy is usually what's needed to recovery from BPD, as well as depression if meds aren't an option.

    I know everything's a real struggle right now but do you think there's even just one small thing you're not already doing that you could do to help yourself? Don't worry about everything on L's list if it all feels too overwhelming. Just one baby step in one area, and then take it all one step at a time. I think if you're able to do this you will feel better for it eventually, and also you'll be able to show L you are doing something to help yourself. But also if she seriously decides to discharge you and take you off the waiting list I hope you will fight that decision, or get someone (e.g. an advocate) to fight it on your behalf, as you do need and deserve appropriate treatment.

    The other thing I wanted to mention is that I've found that sometimes friends or family contacting mental health services does make a difference, and sometimes getting another person's perspective on how ill you are can make them take a problem more seriously. So if you have someone that would be willing to raise their concerns then that might be worth a try.

    I hope you feel better soon. I know it doesn't feel this way but your mood *will* lift eventually. Hang on in there hon. x

  21. *hugs*

    I wish I had something helpful to say.