Wow, there is suddenly so much happening in the world of mental health. Last Saturday morning, a friend called to tell me I should listen to Radio 4 as there was a programme on about mental health that would be really relevant for me. I did listen - hence my last post on here.
Today, Paul (my husband, for those of you who don't know) emailed me from work with a link to an article about post-pueral psychosis on the BBC website. Then this evening a Facebook friend linked me to a Radio 4 programme on the same subject. I haven't listened to that yet - because I got distracted by a link on Twitter to a Newsnight programme - which uses the same material as the BBC article. I wouldn't be surprised if the Radio 4 programme isn't about the same film (sorry about the double negative, I always try to write clearly, but it's late and I'm tired.
Here are the links:
http://www.bbc.co.uk/news/health-19323695
http://www.bbc.co.uk/programmes/b006mk25
http://www.bbc.co.uk/programmes/p00xn7pc
Anyway, I just went a bit mad on Twitter, replying to all the people who had commented on the Newsnight programme and trying to get them to look at my book. I was just so excited that several other women who have had post-partum psychosis were publicly speaking about it - it is such a huge and important step forward for mental health!
It made me sad that the woman who confided to mental health professionals on a Monday that for the last several weeks she had been suffering intrusive thoughts about harming her baby and young son found herself in a locked ward by Friday, without her new baby. She was given ECT - which she said was very effective in her case. But OMG - will this help other sufferers come forward?
Shouldn't the mental health professionals have reassured her that she'd had these thoughts for months yet not harmed her sons and that therefore she was unlikely to do so? Shouldn't they have congratulated her for having the courage to tell them her deepest thoughts and fears, and treated her gently and kindly and with compassion?
Then again, she seemed happy with the treatment she received, and the outcome was an awful lot better than for one of the other women featured on the programme/in the article, who presumably did not confide in mental health professionals and who subsequently killed herself and her baby. Perhaps I should just thank God for the mental health system instead of berating it for the standard of treatment it provides.
After all, I am still alive, I have my baby (she's rather grown-up now actually) and her three siblings - I have my husband and my home and my friends and a multitude of other blessings to count. Maybe I shouldn't complain about the label of schizophrenia that I was given in exchange for the help I received.
But no - I still think that there is much room for improvement in the mental health services. I hope I can help them in their efforts - work with them, help them to see things from the other side, help others to continue to understand the issues.
It is such a big subject - but the media coverage is really going to make a difference. Thank you, BBC!
I was threatened with ECT too the first time I was in hospital! I am still so grateful that I was too physically ill to go through with it! I overheard the doctors discussing me and if I could go through ECT that day. One of them said that judging from the test results (blood tests and ECG) I may not survive ECT and they didn't want it (my death) on their shoulders!!! And yet they still claimed that they had 'my best interests' in mind! Hypocrites.
ReplyDeleteThere is a massive amount of room for improvement in mental health services. If I ever do get the courage to read through my hospital notebooks and write about their contents there'll no doubt be numerous incidents that shouldn't have happened! After all, I was in for over a year!
You are so lucky to have your four children and husband but I don't feel that you should have the schizophrenia label attached! Obviously I don't know you, your breakdowns etc but if you have been well for over a decade, then odds are you will not have another breakdown! That's why I'm so frustrated that schizophrenia is either for life or can be erased with admission of a misdiagnosis. Maybe seeing a psychiatrist who didn't give you the diagnosis will help to get your admission of misdiagnosis?
But again, schizophrenia is just a label that maybe we shouldn't complain too much about receiving, after all, I think I'd much rather have a label of schizophrenia than the label that poor Tony Nicklinson had - locked in syndrome. Don't get me wrong, if I had the chance of having my label removed I would, but maybe it'll be what makes me slightly more unique than most! I'd rather have a strange personality than a boring one!
Anyway, you keep up your efforts and I'll keep up mine. Maybe between us we can fight the services and get them to change something!!
Hi
ReplyDeleteA psychiatrist recently said that I am maybe in remission or maybe the original diagnosis was wrong - in other words, he doesn't know. Which is the only honest thing he can say. I really, really, don't mind any of it any more, even the label - it has been an interesting journey through the mental health system and I have learned a lot. I have dismissed the label for myself, I don't need anybody else to confirm that I am not schizophrenic now.
I would love to be able to stop psychiatrists from labelling others though, and I will keep working for this. I think the most important thing is not to fight the services - imagine how much easier the hospital experience would be if you just accepted the meds from the outset - no restraint and forced medication for example, which was definitely one of the worst aspects for me. I hope that if I ever do get psychotic again (I don't think I will, as I have beaten the anxiety which made me susceptible) I will be able to ask for help and accept it... If I ever make any money I am going to save up for an emergency fund so that I can go to private hospital if I do ever get ill - I am sure you get better treatment if you pay for it. But it shouldn't be that way, so yes, let's keep on making a noise about it all!
Don't worry about your diagnosis, or ever feel ashamed of it or anything else you have done or experienced. (This is easier to say when you are my age - I have twenty years on you! But it's true.)
You are doing very well, and you are still very young - there is no reason why you should not have a family eventually - when you meet the right person you'll know. And a job, or whatever else you set your mind to. Just remember it is your mind - you are in charge of it. As a friend and psychologist said to me a couple of years ago - you control your thoughts, and your thoughts control your emotions. When I had CBT it all finally clicked - negative thoughts become habitual and affect us more than we realise - changing these to positive thoughts takes an effort but eventually becomes a habit too, and makes the most astonishing difference to our outlooks and thus our lives.
I am looking forward to reading your book.
All the best, Louise
Hi,
ReplyDeleteI've sort of accepted my diagnosis now. I know I had a mental illness and as much as I hate it being schizophrenia, I've just sort of accepted it, moved on and gone to start helping others with similar diagnoses now. I can't be bothered fighting the system to try and get my label removed. An admission of an incorrect diagnosis would be impossible to get from my current psychiatrist and as much as I have no respect for him, I can't be bothered fighting to get a new one!
I see what you mean about fighting the services but I have to disagree with just accepting the meds! There's no way I would ever accept meds ever again after the damage they've done to me already! I'm coming off the last of my meds at the moment and there's no way I would EVER willingly take a psychiatric medication ever again!! When I had endoscopy at Easter, I was offered a sedative and completely refused it! Just the offer of one stressed me out too much for me to even consider taking it. Forced meds was the worst thing for me too and I still have nightmares about the first time I was forcibly injected. The worst thing is, I know the first part of the recurrent nightmare is true, but I don't know if the second part is or not! By the time the 'second part' happened, the drug had taken over and I was unable to move so whether or not it actually happened is beyond me. The fact that it's recurrent makes me wonder if it is.
I'm not ashamed of my diagnosis, but I worry about the stigma to announce my diagnosis in public. I might one day, but not this day. I'm too scared to even tell people about my depression, anxiety and extreme arachnophobia which borders on OCD! Schizophrenia is such a misunderstood diagnosis and I reckon that people would shun or avoid me if they knew about mine.
I would love to have CBT again, I had two courses of it to help my arachnophobia and all the rituals and behaviours that go along with it but never had a course that dealt with 'life issues' so to speak. As I say, it is something I would love to have but I doubt I would qualify for it anymore as I 'only' have occasional depression! Plus with all the cutbacks at my local CMHT they may not be able to even offer any! I see a CPN every 6 - 8 weeks and my consultant psychiatrist every 6 months which isn't a lot for someone not even in remission from schizophrenia!
The book is on hold at the moment, will hopefully pick it up again in a few weeks time. In fact, I may post the beginning of it as a blog post to get feedback on it and get help with changes (spelling, grammar etc) that need making. It's still a very first draft so far, only about 13,500 words at the moment so loads to do!
Hi
ReplyDeleteI am so annoyed - just spent an hour answering this and lost it before it published. I will try again - more briefly.
I don't take psychiatric medication as you know, and I am really grateful I don't need it - I don't think I would ever have fully recovered if I had been on long-term meds. I just meant that I hope I have sufficient insight, if I am ever sectioned again, to agree to take pills rather than being forcibly drugged.
I do know people who benefit from their medication. I think people should be given an informed choice about what to take and whether they want to take it.
I don't think you should disclose your diagnosis. I hid mine for at least fifteen years - and it was only because I 'pretended' to be normal that I was able to fit into society. Eventually I realised that I am normal - but admitting to a diagnosis of schizophrenia is not easy, and even now I am aware of some changed attitudes towards me. I just don't care as much as I would have done when I was younger!
Your recurrent nightmare may well be true - but you need to put it all behind you. Writing about it will help - put as much detail as you can cope with, but be clear that you are not sure what was real... It is helpful to think of yourself as a mind with a body attached, as I read somewhere recently. Whatever has happened to your body does not matter in the end, as long as you make your mind strong.
You should be able to get CBT - I know the availability varies between areas, but ask and keep asking. Many more practitioners are currently being trained, so you really should get it eventually.
That's it for now - my original answer was much more comprehensive, I am really peed off that I lost it! It will teach me a lesson anyway - I really should not have the computer on when the kids are home - they were quietly watching TV so I thought I could get away with it!
Louise x