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I can't see a way out of the mess I'm in

(43 posts) (17 voices)
  • Started 2 years ago by Truddles
  • Latest reply from Nimrod
  • This topic is A support question

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  1. Avatar Image

    Truddles
    Member

    Hi Beth

    Thank you for those kind words, I do try to contribute as much as I can it's just in the past few weeks I've found it so difficult partly because I'm so depressed and partly because the lack of sleep is finally taking it's toll both physically and mentally and the epilepsy is having a field day, I just wish I could go to sleep and never wake up

    It's not easy when you've a complicated medical history and none of the Consultants are doing anything other than pass you on to the next. I can't with the best will in the world sort out the OCD whilst the epilepsy is so uncontrolled. And as they've stopped my CBT I now can't get the epilepsy sorted, as my OCD means that at the moment I can't manage an admission. I've worked hard to try and sort out my OCD but there are limits as to what I can manage with lapses of conciousness because of the epilepsy neither is it easy when you can't see properly - another problem that they wont address

    None of the Consultants listen to me, it doesn't matter what I tell them they just write what they want and so my notes are becoming a complete work of fiction. You can't even get them to correct their mistakes. I have never lied to any of them, even though some of my symptoms especially those relating to the epilepsy sound really bizzare and so I don't appreciate them misrepresenting what I say, ignoring me or lying to me.

    It is deliberately misleading when they are misrepresenting what you tell them, especially when you tell them so and still they persist.

    I was sent back to the hospital that triggered my OCD years ago supposedly for treatment for my epilepsy and OCD and although I went with an open mind they've managed to ruin my life again. Basically if you don't fit into any of their pet theories they try to fit you into their theory and if you don't they don't want to know.

    Any one know how to get an advocate before I end up falling down during a seizure and breaking my neck

    Thu Mar 25 2010 16:33:29 #
  2. Avatar Image

    bingo
    Member

    Beth,

    First, Joel, who is the boss at OCD Action, did not say that OCD Action is unable to help further. He said that they have to ration resources. The charity has limited resources (the accounts can be seen on this website) and has to share them around among various services, such as this forum, which are provided at significant cost to the charity but are given free to those who use them. The services are provided by volunteers giving their time free and from income from membership fees and donations. If you want to donate to boost resources there is a spot on this website telling you how to do it.

    To say that consultants deliberately mislead and lie are very strong words. Do you have evidence, and if so will you share it with us? Yes, there is a proven case of one psychiatrist plagiarizing anothers' work but that does not mean he has lied to his patients or falsified notes. Also, the fact that one psychiatrist has done something wrong does not mean that all the others or a majority of them lie or do other wrong things. Obviously mistakes are made but we are discussing deliberate lying and falsification. So why assume that because one psychiatrist did something wrong that the others must also deliberately do the wrong things you accuse them of? That is just as illogical as assuming that because one forum contributor makes a statement then it must be beyond doubt and therefore all consultants are up to no good.

    Finally, I know what I said in my fourth paragraph may have been seen as hurtful at that stage but you should have read on as you clearly missed my encouraging words offering hope and a possible opportunity.

    Bingo

    Thu Mar 25 2010 20:58:54 #
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    Truddles
    Member

    I'm at a complete loss for words

    Thu Mar 25 2010 21:41:26 #
  4. Avatar Image

    Truddles
    Member

    Other to add that I'm still going round in circles with nobody listening, as was the case with the meeting today. They're quite happy to work with the wrong information and to continue sending me from A to B to C and then to blame me for seeing so many Consultants I can't do any more than I have short of getting a medical degree and the length of time this has taken it would have been the quicker option

    Fri Mar 26 2010 12:56:20 #
  5. Avatar Image

    Truddles
    Member

    I've had enough and feel that it's time to call it a day. I've asked until I'm blue in the face for help and got nothing. I've had some CBT and that's been stopped so the other Consultants now wont do anything. I've told the Team that I can't cope that I'm suicidal and they're refusing to take any notice. When I told them I'd had enough and was going to end it all the person I saw tonight said she hoped I'd have a good night and left. What was it that I did that was so wrong all I wanted was help and I got nothing. If they wont help to stop it then I will as I can't cope.

    Fri Mar 26 2010 20:10:41 #
  6. Avatar Image


    Unregistered

    Please, please, please don't do anything rash!!! I don't want you to give up. I feel so useless, I want to come and help you somehow but I don't know what to do. Please PM me or something and keep talking, let us know you're still here. Please don't go.

    Fri Mar 26 2010 20:17:27 #
  7. Avatar Image


    Unregistered

    I have been reading this thread and not posting but I have decided to come in on it because I am getting very upset by it.
    In my opinion Bingo has given some very sensible and caring responses. This is a public forum for the purpose of helping people who are suffering from a deeply distressing condition. As a leader of a support group I want to be able to introduce people to the forum as a place of information, support, empathy and understanding and I am losing confidence that I can do this. Yes, OCD for many of us comes hand in hand with depression, sometimes suicidal, and we need to express these feelings. Some of us may well have had bad experiences with doctors and health professionals, others will have sadly had personal experience of suicide. These are very serious, distressing issues and before posting on this forum each one of us needs to think of those who will be reading our posts and the possible knock-on effects on others.

    Sat Mar 27 2010 11:01:35 #
  8. Avatar Image

    Truddles
    Member

    Don't worry I wont be posting again, but many thanks to those that have posted to offer me support. It has been appreciated.

    Sat Mar 27 2010 12:42:43 #
  9. Avatar Image

    swan
    Member

    Trudy,
    Aplogies for not applying to this thread before. Im not surprised you are feeling so bad. I have comples diagnosis epilepsy ocd and depression like yourself. However i know I am lucky that my epilepsy does not cause you the same issues as yours does. Bingo I know from experince that consultants do not speak to each other ie I have a nuerologist and psychiatrist. I have requested a change of nuerologist. Even within the same area treatment can change. I had a really good social worker then a really bad one who decided I didnt have ocd even though pyschiatrist knew I did. I now again have a good social worker but have to change because she only does short term pieces of work. What Im trying to say is that Trudie is having really bad time and really could do with someone supporting her. Trudy have you approached your local Mind for advocacy support, ocdactions service is knew so they are still training people up. Mind may also help with a referral to a cpn or social worker. Take care pm me if you want to.

    Sat Mar 27 2010 12:53:30 #
  10. Avatar Image


    Unregistered

    If a person can’t express their pain, even suicidal thoughts, on here, where can they? (other than the Samaritans, and as good as this service is, it cannot give advice). Many health care professionals do not want to listen to a person who is that desperate. How far should we take this? I am aware that some symptoms of OCD are very distressing and disturbing to others. Also, when a person writes about a particular obsession or compulsion, others may be distressed because they latch onto it themselves. Almost anything we write can cause distress. We could just chat about what TV we watch, but I’m sure that too could lead to controversy!

    I had a close relative who committed suicide. I know how painful this is, but I feel the more we speak out the better. Perhaps if people were not made to feel guilty for feeling suicidal they would speak more openly, and just maybe some would be saved. Would we wish to drive poor Trudy to an even greater despair and a suffering in total silence?

    Bingo, I read every word of your messages. I’m not sure, however, if you read mine. I did not say that all consultants lie or mislead. I wrote ‘Unfortunately it does happen’! I went on to say I lost faith in their integrity because of a certain well-known psychiatrist. I have other reasons, and I could name a couple of doctors, but what would be the point, you wouldn’t know them! I am sure the majority are decent and honest, but no profession, whether it be the priesthood, teaching or psychiatry, is above reproach and sadly there are dishonest people in all walks of life.

    Your ‘encouraging words’ were noted. I never reply to a post without ‘reading on’. I felt they were a little hollow after your initial comments. It sounded as though you doubted Trudy’s honesty and you appeared to be basing your view on your personal experience of the NHS. Sadly, we don’t all experience the same!

    Trudy, try to hang in there, my dear. This has been the most awful time for you.

    Sat Mar 27 2010 15:38:21 #
  11. Avatar Image

    bingo
    Member

    I seem to have stirred up a hornets nest leading to a great misunderstanding. The question is did readers not understand me or did I not explain myself clearly? Before I offer an answer to that let me first say that if I have upset anybody, and it seems that I have, due either to their lack of understanding or my lack of clarification then I am very sorry. Please accept that it was my intention to be supportive and constructive.

    Let me explain that I suffer from a version of Pure O with undertones of Tourettes. Basically this means that things come out either orally or in writing spontaneously which is probably an extreme out of control version of the popular expression “calling a spade a spade” (I accept that this term may upset those who are unaware of the problem or use it in a different way). I have other conditions as well.

    Next, I recognise the situation Trudy finds herself in. This is because I have been in that same situation much as she says with the lack of communication between consultants causing all sorts of difficulties and this led me to believe that they were all in collusion with each other and lying to me. With hindsight I now know that was not the case which is why I cast doubt with the situation Trudy portrays. I have Pure O with T and I have other conditions, although not the same as Trudy. So I have been there done that – and it is not a happy place.

    This was long ago at a time when the NHS could still claim Crown immunity from prosecution and complaining was to no avail. Things, thankfully, are so much better now. However, as mentioned in an earlier post, when I was so exhausted and could see no prospect of improvement or of any chance of having any semblance of a normal life I effectively gave up. But what did I give up? I just let things go the way they went. This meant that I did what the medics suggested, albeit rather uncaringly. On reflection I think I was so exhausted and fed up with everything that what I gave up was the obsessiveness. Things that were impossible for me to do or allow to happen I did and allowed without resistance, and I did them because I no longer cared, or to put it another way, I lost the stubbornness to resist. It worked for me and although I am by no means cured and there is still a long way to go I now have some semblance of a normal life and I hold down a demanding and challenging job.

    This is why I think we have it in us to overcome enough of this dreadful condition to give us a chance of a life. Although I don’t know Trudy and have never met or spoken to her, I have seen her at the OCD Action conference in London earlier this year and from that fleeting observation I believe she, as we all have, has it in her to look inward and to trigger that something to either gain some control or to allow something to happen to start to overcome the seemingly insurmountable difficulties.

    Finally I hope that Trudy will read this, and if she is off the forum I should be most grateful if anyone would be so kind as to pass it on. And Trudy, if my words offend please consider that I may not be fully in control of how they come out, so can I ask that you give a flexible interpretation on the basis of “you know what I mean”. I truly intend to be supportive and by outlining my own experience hope to give encouragement and support to you and others.

    Take care,
    Bingo

    Sat Mar 27 2010 21:18:54 #
  12. Avatar Image


    Unregistered

    Dear Bingo
    I am so sorry that this thread has caused you upset, sadly it is not difficult to stir up a hornets nest on this forum and it has been the cause of a number of excellent members leaving. I feel sad that you feel you have to try to explain yourself and it has made you search your own conscience and experiences simply because you tried to help someone else. I find myself increasingly in the same situation on this forum. I thought your original post was brilliant, it made perfect sense to me.
    All of us have our own experiences and many of us have learned our own coping strategies which we would like to share in order to try to help others. Like you, I went through the NHS system at a time when little was known about OCD and it's treatments, and indeed several times in more recent years until I found the right way for my own stability. I believe that you have a lot to offer to this forum, I used to think I had too but I have become weary and depressed with all the in-fighting and am on the point of giving up as I have to try to remain well and stable. I can honestly say this forum and it's associated PMs has given me more grief in the last couple of months than all my years of psychiatric face to face treatment.
    Sorry to sound so depressing but as you can see the arguments on this forum have brought me this low.
    In answer to your original question, I can only speak for myself but I understood you perfectly. The upset is not because of a misunderstanding or lack of clarification but more because you hit the nail on the head and that can be very painful and provoke intense responses. Best wishes, Joyce

    Sun Mar 28 2010 8:21:45 #
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    Nimrod
    Key Master

    Dear all, we are very proud of this forum and the way that it provides vital support and comfort to many people. OCD Action and the forum moderators’ role is to help create the atmosphere of a supportive community on this forum whilst trying not dictating conversations or censoring comment.

    It seems that a number of forum users have found some of the posts in this topic very difficult and that this thread is not helping to foster the sense of community support. For this reason we have decided to lock this thread and prevent further posting on this topic. I hope that you understand.

    Caps

    Tue Mar 30 2010 9:14:50 #

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