PNI it took a while

[Anon]

I think this is a wonderful site.
Since the birth of my 2nd I have not understood the physical symptoms I have been experiencing. I am a professional (career wise) and have always been well (even after my first born).
About 6 weeks after the birth of my 2nd, I knew something was wrong as I had blurred vision, migraines and what I can only describe as agarophobia. I hate walking over bridges and through busy crowds. I hate travelling in a car at the moment. Does anyone out there get panic attacks and breathlessness - unpredicatably? - it's frightening isn't it?
This web site has really helped me and the national one as recommended on the home page too.
We must stop this from being taboo and 'unacceptable' and we must also help, inform and protect our male partners

Thanks for sharing all your stories
xxx

[Veritee]

Dear Anon

And Welcome to this site and Forum.

you can post as a guest without giving any details if you wish.

I have this facility although some have said top me it would offer more protection if guests had to register - but I feel women need sometimes to know they are anonymous.

I especially would have liked a service like this when I was ill because I worked all the way through my illness as a professional youth worker and rightly or wrongly I felt I had more to lose if the details of my illness became known, because I felt the stigma of PNI was so great and that the true symptoms of the illness ( such as the obsessive thoughts I suffered, panic attacks phobias, anxiety ) were just not understood.

I had told them at work ( I worked for Cornwall County Council) that I had what I then called PND - but I think they just thought this meant I was a bit down and weepy and had not bonded with my baby.

Some of that was true - ( although like the experience of some other PNI mothers I would say I bonded rather too much with my baby rather than not - but it was a lot more than that - and I could never tell anyone the total truth about how it affected me.

Sometimes if you are a professional you feel more scared than anyone to tell it like it really is.

I am not saying that this sis necessarily true for you - but it was for me although this was 15 years ago.

In answer to your question - yes I had agoraphobia - but this was only a minor thing for me ( this was funny as I expected it to be more as I suffered agoraphobia as a teenager for a while) but I also had the vision disturbances, migraine ( every day for 4 months after her birth)

But I certainly had panic attacks especially if I went with my baby anywhere I perceived to be dangerous to her:


For instance over water, heights, near hard surfaces, crowds, near anything dangerous in the street like cranes, sharp objects etc, traveling by car and in my case even busses and trains - the list could go on.

But having had agoraphobia as a young woman I could not describe this as such - it might be agoraphobia for you and especially if you can not do these things without your baby as well as with.

But for me it mostly happened when I had my baby with me and what it was was a fear for her safety - that I could not keep her safe ( I felt inadequate to do this job, and that if I failed I would be to 'blame')

This would affect me a little when alone as I would also be scared of hurting/killing myself ( mostly by accident or illness was what I feared) so I would leave my precious baby on her own!

Unfortunately what I describe was only the early stages for me and their was worse to come - as my fear of danger for me and the baby developed into terrible 'what if' thoughts - that even got to the point of 'what if I killed or harmed her myself'!!

Very hard to explain if you have not had them.

If you are experiencing these kinds of panics it is important to get support and treatment before they escalate - they might not - but they could.

However my experience was many years ago, the forum is quiet at the moment but I hope others who are current sufferers will come on and share similar experiences with you.

I know it does not make if feel any better when you are going through it - but what you describe is very common with PNI and sharing it can be the frist step to knowing you are nto alone and that you can get support , understaning and treatment

Have you been to your GP - have you had any treatment or support? - How old is your 2nd now.

I hope to hear from you further.

All the best

Veriee

[WendyG]

Dear Veritee,

You are a very good woman responding to us all. Thank you.
What you described is very accurate - the 'what if' underlies panic and anxiety - and the symptoms are awful.
Maybe some of us are more susceptible because of our personality types. I don't know. But you have helped.

I have got help from
a great GP.

Thanks.

[Veritee]

Hi Wendy

I just hope it helps - I'm not really a good woman I just suffered this awful thing and I am now disabled due to an accident and waiting for a further op - so I am using my time constructively - I hope - in spending more time than I used to running this forum. But thank you for saying so, its lovely to get feed back that it is valued.

It is also half term so I have more time than usual to answer posts in more depth.

There are times when I have to give short answers and not answer everyone.

As for it being 'personality types' I know what you are trying to say but I have to say that in my opinion (and experience) it actually has noting to do with individual personality traits - and research would back this up.

Yes I did suffer some sort of mental issues with agoraphobia when a late teenager , and there is some research to suggest that if you have suffered any depression, anxiety, phobia in the past you may be more susceptible to PNI - but this is only some research, some other says otherwise.

As far as I am aware the verdict is still out on this one and there is a lot of evidence to suggest that PNI can strike anyone, with any birth and what I have learnt on this web site from counselling for the APNI and all the other things I have done and read on this subject , backs this up.

For instance in my opinion based on my experience and reading:

* The majority of women who used this web site have NEVER had any mental health issues before PNI (or at least they are either not aware of them or admitting to them, it is hard to be sure but I think in the main they never had them)

* about a quarter have had mental health or emotional issues before - or at least a tendency to anxiety, depression or phobia

* those that have never had past mental health issues do tend to use this site for less time though than those who have - but I have no way of knowing if this is because those who have had a mental health issue have it for longer, need more support, or have simply learnt the value of support when you are ill and therefore will tend to take advantage of the support

* some get PNI with each child, some only have it will one and it seems to have no reason why it should be this one particularly - for instance I have know women have PNI only with their 1st or with their 3rd of with 2 children or one and not another.

- there could be a reason ( an extra trigger point or unique circumstances or not sufficient or the 'right' support around the child/rens birth that a women gets PNI with ) but if there are - these reasons are unique to each woman and do not follow a pattern I can discern.

*economic groups, class or race seems to have nothing to do with it – but culture does seem to play a part for some.

*Women of all ages get PNI and pretty equally, from 15 to 50

*women who abuse alcohol or take drugs of various kinds are no more likely to get PNI than any other

Some things do seem to be a factor however:

* about 15% of women who use the forum have suffered abuse or rape

* 10% a traumatic miscarriage, stillbirth or had a termination or in the past and this seems to be something that becomes foremost in their minds again when they have PNI

* More have experienced a traumatic or ‘bad’ birth experience ( birth crisis) of had an ill or prem baby

* the quality of the support you have ( or how you perceive it ) not the quantity seems to be a factor for some women.

I am just saying this to you because so many women seem to blame themselves - feel it is their fault due to some 'weakness' or 'flaw' in their personalities or their is something they have not done or they have not tried enough or even they have not married the 'right' man or have enough money or nice enough home.

But none of these things are a factor:

at least 1 in 10 women get PNI and probably as many as 1 in 7 with any one birth.

The reasons are not clear but it has NOTHING to do with any failure or 'weakness' in the woman.

Women who have had a history of mental illness for most of their life have several children with no sign of PNI, others who have never had any emotional or mental problems have PNI.

I have known professional women who have coped with very stressful and demanding jobs have PNI as well as those whose only ambition was to have a family and bring up kiddies and everything in between!

PNI knows no economic age or social barriers.

So it is nothing to do with personality or any thing else in you that is the 'cause ' for why you or any other women is suffering PNI but one of the most common symptoms of PNI is blaming yourself for everything - from having it in the first place, for being a bad mother because you have it or being a 'bad' mother anyway , for not coping while you have PNI and for being somehow less of a person/woman/mother than others who don’t have PNI.

Sorry to go on about this but I think it is important to see PNI for what it is - and illness - not any weakness of emotional trait in the individual.

You like most women with PNI are a great mum and I am sure that in your job you are a good, professional and competent worker and able to cope - but you are suffering this awful illness PNI and managing to get through just the same which is a very hard and brave thing to do.

Why don’t you tell us a bit more about yourself.

I am so glad you have been able to get a good GP that you trust and is helping – this is half the battle to get the right sort of help at the right time.

All the best

Veritee

[Veritee]

Dear Anon

You have not been back so I wondered if my reply upset you in some way.

I do go on sometimes - I get off on one and go into a bit of a waffle - instead of getting on with what I intended - which was to support you.

Sorry if I went on about 'personality types' I did understand what you meant and you are probably right -

its just I get sometimes caught up in the 'issues' of PNI and this can put people off especially if you are not used to me and you have not posted much

So sorry - just going off on my own thing

I hope this has not put you off this forum - which really can be good and there are more than just me who can support you on here

I hope you get back to us

all the best

Veritee

[Carmen]

Hi Anon

Are you still out there??? We're here if you need us.

Take Care
Love Carmen

[Anon]

Dear Veritee

Thanks for your reply. I am so pleased to have found this site, but when I am down, I do very little. Your response makes really good sense and my counsellor had said that I am a very good example of 'self help'. But, it is hard nonetheless. Jack is 10 months now and my husband is beginning to understand what is going on, I think.
I thought the 'TMcdonald 2nite' was OK but failed to fully describe the terrible symptoms of anxiety - which if in the open - would help women to feel less scared and depressed.
Anyway, thanks again for your great web site

[Veritee]

Dear Anon

What you said about your reaction to the 'TMcdonald 2nite' programme really rang a bell and is EXACTLY what a few of us on here have been saying our reaction was too.

That while it was great PNI was aired on prime time TV at all - we just did not relate to it as our experience of PNI, as it was just not strong enough about what it really is like to suffer this and how absolutely dreadful our symptoms can be.

I think this has always been the theme of this forum in a way - to tell it how it really is- as far as is possible and much of we have read or seen about PNI including the TMcDanald thing was just too 'sanitised'

Also they never seem to us to be talking about 'real' women. I know that they are often about women that exist and they are interviewed and or appear on screen.

But what is portrayed is not our lives.

I am not putting down any women who have appeared on these programs and in books and written books at all as I, when I wrote my story for the book I contributed to also ‘sanitised ‘ my story and have done many times when asked for the media, but mainly it is the programme makers, the authors and the reporters that sanitise it, I think.

Elaine Hanzak’s book does tell it like it was for her though and I would not call it sanitised at all, and it is a great book and she was very brave to write it so graphically and truthfully.

I think her book stands out for being one of the few I have read that achieves this level of reality and honesty

-But I worry that a book by one woman is dismissed as one woman’s story who was particularly ill and it is not realised that it is as bad as this for hundreds of women and not those diagnosed with severe PNI or puerperal psychosis as Elaine was.

It is also one book about a woman who is a teacher and first married to a solicitor and then to a teacher, and like many who actually have such a book published are very articulate, educated to A level standard or beyond, can write well, and have the knowledge or know where to find it on how to get their story published, I qualified as a teacher too in the end - but as many of you will know my life has been very, very different from Elaine’s

– and there are many women out their who could not relate at all to Elaine life, or my own.

I am not knocking Elaine’s book at all – I think it was a superb book and well written and I would hate to upset her or anyone who related completely to her life – it was great and a story that needed to be told - its just that we felt there are more stories to be told and more lives that are led and we wanted to explore some of this too.

( I have to say I have not yet read Brooke Shields book – I have been told it is very honest, but the same applies, her life as a celebrity bares little relationship to many of ours although it has done a wonderful job in convincing the public that anyone can suffer PNI as has Fern Britons and Esther Ranzen’s work to name a few))

I would not like any programme or article or book about PNI to be like a combination of ‘Trisha’, ‘houses behaving badly’ and ‘you are what you eat’ with a bit of serious comment by the GMTV doctor - but we would like it to relate a bit more to the reality of our lives.

I have wondered if it could be a class or cultural thing as many of the women who appear in these programmes or books are 'middle class' and middle white British culture' I don’t mean to be judgmental I just wonder and I am only thinking out loud??

But PNI does not in the experience of this forum have income or cultural barriers ( at least not as far as regional culture in Britain ie North , South, England Scotland, Wales etc is what I am talking about here, I just do not know about colour or ethnic culture i.e. black, Asian, Muslim, afro Caribbean, Central European, because no one on this site mentions their culture or their colour on here ( if you are black or from ethi=nic culture ( do not know how else to pu tit sorrry and you want to tell your story , please contact me )

and except for something I read about research into Asian women and PNI - who accordding to this research tended to externallise ie have external, physical symptoms of PNI rather than emotional -I do not know of any research or books on the subject)

And it does not have any class barriers and whatever some think, class is still very much alive and living in Britain today.

So what I am saying is perhaps we did not relate to what is broadcast or written about PNI because it is only a section of society who appear on these programs - but it could also be because absolutely no one woman - not even Famous ones like Fern Britten want to tell the world how low they went and how shocking their symptoms were even to them that they could never really tell anyone?

And their are some aspects of PNI that some women experience but absolutely no woman will openly discuss in my experience and probably never discuss with their Doctors etc

One of these is thoughts and fears that you will sexually abuse your children ( and it is surprising how many do have this fear at some point of their illness) not always the baby but some times older children - and even on this forum not one woman has ever said openly about these kinds of thoughts although I know that some have experienced this.

Their are others perhaps not so culturally taboo as sexual abuse but women just can not discuss. For instance I know women on her have agreed to have their children voluntary fostered when they were really ill - but this has rarely been mentioned on the programme - also the degree that women at times really hate and despise their children is rarely talked about.

I think I personally broke the taboo on this forum, about talking about obsessive thoughts about harming or killing your baby and my story in Cara Atkins book might have helped other women not on this forum to talk about it – least I hope so - so this is now less of a taboo - but more feel like this than still dare say even now and few want to really describe it is all its awfulness and how this really is.

Another interest of mine and one that we have consistently found is not welcomed if we talk about it on here is both the length of time some of us suffer – and what legacy it leaves in the lives of women that had PNI many years afterwards.

I am one of the few on here who’s PNI was over 10 years ago and certainly there are many that having PNI once over was forgotten and left no effects . But I have spoken over the years to women who are survivors of many years – for one it was 30 years ago – another I talked to the others day – nearly 20 - for whom it has at least changed the direction of their lives ( not all bad at all I may add) and for some left scars of grief that has not gone.

I think that like many subjects it is not until we acknowledge the effects it can have that we can find ways when women have and are treated PNI to lessen the effects in their future life.

I don’t know - but the whole point of this ramble is that a group of us wanted to have a go at telling it as it is - some will do it anonymously and some put their names to it and we wanted to get it published as a book!!.

So I know that you Anon come on here anonymously and so obviously would not want to be part of this

But if anyone else reading this wants to join us in telling it like it really is , anonymously if you want to – please e mail me

I am sorry Anon – I have as it is known on forums – high jacked your thread –

But what you said was exactly the same as many of have felt since the TMacDonald programme I felt I had to say what some of us have been thinking and considering since

All the best

Veritee

[Anon]

Veritee

I would be interested in contributing to your book. I am an author some of the time and have experience of writing - but I suppose have never written anything so personal before - so this would be a real challenge!!

Wendy

[Veritee]

That would be so great Anon

Yes I think it is VERY different when you write something so personal to you and a much greater risk.

- we were thinking if we did it we would do it as a collaboration ie no one person out of us all credited on our own as author or one person getting any royalties - this would be shared between contributers and perhaps this forum

- but if their was ever any chance of publishing it we would have to iron this out more -

That is if we ever did succeed in getting it published - which we may not as I do not think any of us has any idea how to go about it so perhaps your contribution on this could be really helpful if you have already written and published.?


I have a little experience of writing - enough to know I can do it with a little effort - but not much.

as a youth worker I had stuff published in specialist youth work journals and I contributed to Cara Atkins book - but quite honestly I dictated most of it to her over the phone and then she sent it back by e mail to be edited, so it was her effort really

Bu together we could do something of value and I personally think we should try

If you are interested - please e mail me on [e-mail]

I will not share you e mail with anyone if you do not want me to but I would need to share it later if you decide to do it so all concerned would be able to collaborate with you on this.

We thought we might all start by writing our stories and exchanging them and seeing what common themes we could pick out to explore further

- I said above hat my interests would be -

But to do it like this would take much longer than if an individual wrote a book and someone needs to co- ordinate and compile it , which I was offering to do as I am at home being disabled and I have no young children now.

But we might find we did not always agree with each other on stuff - so we would have to discuss if we all did a section and these sections stood alone - or we agreed to accept things we were not entirely sure of - because in my experience of collaboration if you all try to agree too much it dilutes the force of what each has to say.

so perhaps we just agree to differ - just thinking out loud

I noticed that you posted in the bit about the request from 'the real story'

well the update on this is that they have put the possibility of such a pro gramme on hold - I am not sure exactly why but I think because they had a certain angle in mind ie women not seeking help because they were scared of the consequences

and this did not pan out , because while it is an issue it is not an issue that is coming from the women who have PNI as something they really need to air - more from this researcher - and so he could not find women to back it up.

But I personally latched on to the idea of 'REAL' stories and that the story of real women needed to be told

and wen one or to others without me saying anything said the same thing

I really felt i wanted to give this one a go!!
so what do you think - are you in? I know this is such a risk to you as unlike th rest of us you do not know is, you have no idea of our views or who we are

but to be honest if you have written before - we need your skills!!
All the best

veritee

[monica]

Hello Anon

I just wanted to say that you are not alone in what you're suffering. This site has helped me tremendously and has given me so much support.

I, too, got PNI after my second child. I was fine after my first and in many ways things were much harder for me then, than now, so it's a bit of a mystery why I have got this.

I had a very good pregnancy, although was quite stressed as I'd previously had had two miscarriages.The birth was easy and quick. After about 4 months, during a manically busy week, I got a feelingof pressure round my right eye that would not go. I then started feeling spaced out and got double vision when looking at things at a distance. Everything seemed distorted and I put everything down to having a problem with my vision, yet everytime I went to an eye clinic ( about 4 different ones), they all said my eyes are fine. I also started getting headaches, which paracetamol wouldnt' help. I, too, became agrophobic. Everytime I'd leave the house I'd feel sick and everything would appear weird almost distorted, but I put everything down to having a problem with my eyes. I became obsessed with the fact I was dying and couldn't eat, sleep and all I'd is cry. I'd have panic attacks - suddenly I feel floored as if my blood pressure had dropped suddenly, dizzy, but without the hyperventilation which I'd commonly believed to be a panic attack. I was anxious 24/7.

I'm on anti Ds now, and they've made a huge difference. although not completely recovered by any means, I'm much better.

I really hope you recover soon, but feel free to share your worries, experiences with the wonderful people on this site who have proved so supportive to me.

Monica

[cheshire]

Dear Monica

Thanks for your posting. It helped