gail
Senior Member
have 1 daughter and have had this since 30 weeks of pregnancy :( my daughter is 27 months.
Posts: 373
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Post by gail on Jul 19, 2006 18:31:02 GMT
feel ok though! i think ...................
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gail
Senior Member
have 1 daughter and have had this since 30 weeks of pregnancy :( my daughter is 27 months.
Posts: 373
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Post by gail on Jul 20, 2006 11:30:32 GMT
hello ladies
i thought i wuld let you all know about my successful meetings with my new CPN who truly is wonderful and very pro-active.
for the first time since this illness i feel as though someone is doing something FOR me rather than making me feel like a freak if you catch my drift.
it was only yesterday that i found out there is actually a woman who specialises in PNI in the wales area and my cpn, has arranged for us all to meet next week at home. AT LAST!
WHY COULDNT I GET THIS HELP WHEN I DESPERATELY NEEDED IT? THE RESOURCES WERE THERE!!!
she has also arranged for some book presciptions on pni so i can get a better understanding and she thinks (and i agree) that i need to understand and come to terms with what has happened to me in order to gain some kind of closure.
she has arranged for me to meet up with a psychiatriast (a female one) although im not sexist, i wuld feel that a female shrink could empathise a bit more with me. my cpn will attend WITH me in order to discuss my progress and to review my medication which has not been reviewed by the psychiatrist yet.
she has arranged an appointment with the physiotherapist for anxiety management too (i didnt know there was any such thing)
........................................................................................i..........................
whilst all this is great - its all happened backwards. at the beginning -at my worst i was just given tablets and sent away! it seems the more im improving, the more im finding out and the more support im getting. im really angry that i wasnt given this information at the beginning. this is just professional laziness. the resourses are there the resourses WERE there and i was not told, i was made to feel alienated - like a freak! by MIDWIVES one midwife actually said to me 'oooh well, ive never heard of that - your the first to tell me about all this weirdness its the tablets. anti-depressants make you go weird' (!!!!!!) God knows how i coped (WE COPED). if i didnt aske for a cpn i wouldnt have got one. if i didnt ask for help i wouldnt have got it.
::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::: IT JUST MAKES ME SO ANGRY!!! there are women suffering out there on their own because the professionals arent providing the information that is THERE its THERE!!! its bloody well there and it must be there FOR A REASON for people like me who and you who need to be told, who need bloody support who need to know that THIS IS NORMAL, that we;re not the only ones suffering, that we are not going to die, that we wont kill our children, that it is HORMONAL, that women do always get better, that it WILL pass, that there is are people who actually specialise in this illness- and it is an illness, like any other my god im so angry im soo soo angry.
why wasnt i told about a ll this support before? when i was ill and incapable of being resourseful and proactive or using my initiative, this support should come to me -i shouldnt have to fight for it for f**ks sake. if someone had just old me what i needed to hear - in those early months. if the stupid f**king doctors had just listened to me WHEN I WAS PREGNANT . THREE f**kING DOCTORS I SAW!!!!!! none of them referred me to the specialist i was supposed to be under (i had suffered depression before and he was supposed to be keeping an eye on me - never even bloody met him!!! i mean what more did they want??? - i was obsessed with death, having panic attacks every day not myself they all said' 'oh yuoll be fine just try to relax! if only it was that simple.
i hold them responsible for my horrific illness that followed. it COULD HAVE BEEN PREVENTED OR IF NOT THEY COULD HAVE PREPARED ME FOR IT. there are things that could have been done. i feel sick. ifeel as though ive been robbed of the first precious months of my daughter's life because of professional incompetence. its disgusting.
AND IM NOT THE ONLY ONE!!!arghhhhh!! im so angry m sorry for ranting but it has to come out i feel so frustrated - what more could i have done - i told them when i was pregnant but nothing was done...
anyway its too late now isnt it the damage has been done, i feel much better but i neednt have gone through all that shit. it just simply should not have happened.
i just want to make sure noone else misses out on what help they are entitled too - particulary if they are pregnant as i believe that pni can be tamed a great deal if its caught early.
oh well - sorry for the rant it had to be said
love gailxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
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gail
Senior Member
have 1 daughter and have had this since 30 weeks of pregnancy :( my daughter is 27 months.
Posts: 373
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Post by gail on Jul 20, 2006 12:42:54 GMT
feel great after that rant above!! LOL XXX
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Post by Veritee on Jul 20, 2006 12:54:35 GMT
Sear Gail
All I could think to say at first when I read your last entry - was EXACTLY, EXACTLY, EXACTLY..........................
This is what I found 17 years ago and in fact I only got the help I needed form the NHS after three years, when I was nearly better - in the meantime I had paid out a fortune for private counseling and also suffered greatly ( and my family ) when it might not have been necessary for us to struggle unsupported for so long.
I keep being told 'that things have changed' and I think some things have changed in that there are a few more resources out there for women with PNI - but not enough and certainly not enought to go round for every woman with PNI
-The difficulty also seems to be in the diagnosis and the perception of the professionals as to when more than just anti-depressants from your GP are necessary!!
You see in my opinion for every woman 'more than just anti-depressants from your GP are necessary' PNI happens to soo many women that their shoudl be a whole collection of reserses avaibale in every area for women with PNI reguardless of incume group, culture, where you live etc
and the sort of services you have now identified should be available for all!
But the resources are there in small quantities AND in a few areas, but not anywhere near enough for all, so we seem to have to prove that we are ill enough or our PNI is bad enough or that our symptoms may be 'dangerous' for you or your family before you can be one of the lucky few who can access the inadequate services that are there.....
And as you have found out this can often be when you have gone through hell and back first, before you get the support and help you need.
Many on here have found this and it make me very angry too.
We are attempting to write a little book - the moderators and I - with all proceeds going to the forum.
Can we use what you said above in our book???
I will be writing something similar and other members the same who have had the same experience.
Would you let us use your words too?
either in your own name or anonymously ?
Veritee
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Post by cheshire on Jul 20, 2006 13:54:48 GMT
Hi Gail I felt/ feel frustrated too - because (as Veritee says) '' you have gone through hell and back first, before you get the support and help you need.'' I feel it was quite like this for me too - it's certainly how it felt Anyway, glad things are moving forward for you though with your CPN etc. Hopefulxxx
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gail
Senior Member
have 1 daughter and have had this since 30 weeks of pregnancy :( my daughter is 27 months.
Posts: 373
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Post by gail on Jul 20, 2006 13:54:52 GMT
dear veritee
of course, id love to help in any way i can. i would like to mention this site too (i think in the heat of everything i forgot to mention above) this site was my only help at a time when i needed help and suport in other ways too. i dontthink this site should be a womans ONLY source of support, but add to any she may be getting but it is often the case that this site is the only help we get.
i remember, and i know others have said this, crying with relief when i found this site. it is the only site out their that is accurate and honest about the symptoms - particularly the 'thoughts'
anyway, please feel free to use anything ive written, its the least i can do. thankyou for your replies and support too. oh - and i dont mind you using my name, thats fine.
i do want to take this further, i want to make a formal complaint to the NHS, both for the ante-natal mental treatment i received and of course the post-natal. maybe we could all do a complaint en masse? i will let you know when i get a reply.
gailx
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gail
Senior Member
have 1 daughter and have had this since 30 weeks of pregnancy :( my daughter is 27 months.
Posts: 373
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Post by gail on Jul 21, 2006 8:32:58 GMT
thankyou hopeful - i think our posts crossed yesterday
had an emotional day yesterday. cried a bit, my rant above was a good release i think as i havent been able to cry for ages,
but in the evening - dont know whether it was because of fatigue i felt downish. then dyl, after cooking dinner left the gas on the hob, so the kitchen was filled with the smell of gas and i panicked as im bad enough with checking things but dyl is so hopeless with the important things like making sure everthing is switched off i despair. i went nuts with him as im sick of checking after him.
then i started having a few bad thoughts - i was angry at first because i imagined a gas explosion becasue of dyl's stupidity and i just want to protect tlws, but then i had bad thoughts about harming her on purpose. theyre washing over me soi its ok but i believe the gas thing was a trigger.
then i went to bed and read some of my book 'depression after chilbirth' and in it it (stupidly and irresponsibly) mentioned something awful - you can imagine i wont go into details as i dont want anyone else reading this to have the same as me - but now i cannot get this out of my head.
argggggggggggggggghhhhhhhhhhhhhhhhhhhhhhhhhh
maybe the emotional rollercoaster of yesterday?
gailxxxxx
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Post by Veritee on Jul 21, 2006 15:12:34 GMT
Dear Gail
Thank you for your kind words about this site - But I too do not thing that a site like this should be the 'only ' support a woman with PNI gets - and too often it is - at least for a while!
this is too big a responsibility for a voluntary site like this and we too want to work toward a situation where this is not the case .
And of course I personally would be happy to join in with any action you wish to take on this - i.e. us know if and when we can help?
You are welcome to use anything on this site in any complaint you might want to make i.e to back up your own experiences ( of course if you quote anyone else's experience and not just general information such as symptoms etc it would be the right thing to do to ask the member who wrote it )
Thank you for saying we can use what you wrote - I think this is valuable as what you wrote echos so many womens experience and you put it very succinctly
As for the thoughts retuning ... Unfortunately this was my experience That whenever I got stressed angry or emotional and especially if my feelings were related to my PNI in any way ..... I expect the gas incident was a trigger - I have left the gas on too - once all night I have to admit, but luckily it is a propane bottle so it ran out!! - and it is frightening. i could not be angry with anyone else as it was me who did it not my partner , but I can see why it upset you!
The thoughts would return - big time - whenever anything stressful like this happened but the reassuring thing is that I could identify that they had been bought on by a specific surge of emotion or stress and that they did not last.
I would hope that this will be the same for you - that any additional stress or emotion may bring on the thoughts again but hopefully it will be for you as it was for me - that you recognize these thoughts for what they are - a form of anxiety, a way of expressing your fears and stress - and they will last for less time.
If that is not the case hopefully you will get some help and support from the specialist CPN and the other resources you have been allocated. What was it that upset you in the book 'depression after childbirth'
I have this book too and I would be interested in what upset you so we can avoid or put warning on things likely to upset women with PNI when we write our book.
If you can not bare to tell me then thats OK but if you can either write it here or sent it in an email to me if it would upset others?
Do let us know how it goes?
but in the meantime we are here as always
Love VeriteeX
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Post by monica on Jul 23, 2006 19:19:46 GMT
Dear Gail
I hope you're feeling better and have managed to banish those thoughts. They are so horrible especially I found when I end up dwelling on things. But in time, they will lessen I promise and something like the gas being left on or reading something upsetting won't leave you reeling.
Take care
Monica
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gail
Senior Member
have 1 daughter and have had this since 30 weeks of pregnancy :( my daughter is 27 months.
Posts: 373
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Post by gail on Jul 26, 2006 10:33:48 GMT
thanks monica*
hi ladies
well i saw the pni specialist yesterday, a lovely woman who is representative of the whole of the south wales valley.
i explained everything to her, i wont go over it all now, but lets just say she was with me a while, along with my fantastic cpn. I feel that, as she was an expert in the field she could reassure me greatly - and indeed nothing i said to her shocked or surprised her. (which was good as this proved to me that she was experienced) anyway, here is what she believes:
1) primarily i was failed by my midwives and doctors during pregnancy. as i have been treated for depression in the past, i should have been revieweds at least once a month throughout pregnancy (i knew this anyway)
2) as soon as i began descibing panic/anxiety to the doctors i should have been referred straight to a cpn/ mental health team to be watched over/ treated
3) As the birth was quick from the time my waters broke, to actual delivery being unde two hours, the midwives should have 'debriefed' me after the birth as this is called something like precipitous brith or something when either the mother or/and baby goes into shock ( i began having panic/anxiety immedietely after the birth, shaking, twitching etc couldnt sleep for at least a week- luckily tlws was fine) i should not have been left to get on with it - the midwives should have told me that i may recieve some anxiety etc and that this was 'normal'
4) I should NOT have been sent home the following morning (as soon as was allowed) but kept in for observation
5)my community midwife team (apart from one lady) failed me as when i descibed these symptoms they looked at me as though i was an alien or something on the underside of their shoe - complete inexperience of this and professional incompetency.
6) i should have been referred straight to the cpn/specialiset ('doh') as soon as i told the doctor (5days after birth) and not just given anti-depressants and sent away
7) she thinks the particluar anti-d perscribed was perhaps not the best for acute anxiety as paraoxetine can be a stinulant and thus compound symptoms. but sayig this i was so desperate for it to work i dont think anyone could have stopped me as i was clinging onto the 2 weeks it says on the label a therapeutic effect will be achieved. and plus i couldnt tell whether it was the tablets that were making me feel this way or pni itself - i will never know i suppose.
8) if this happens in my next pregnancy (cant believe im even contemplating another child after pni!) i will be referred straight to her and a cpn to nip it in the bud.
all in all, a very productive day and i must say im thnking about taking this further but dont know how to go about it - could i sue them for negligence? i mean the ante-natal care i recieved was abysmal.
anyway -she (her name is diane) says she is pleased with my progress - as is my cpn and i believe i have 'turned a corner' in terms of my recovery again and she has noticed an improvement in me even since last week!
i mentioned the vision i had/ mind tricks etc and she says its common to have flashes ie 'flash backs' of your illness and she is not worried about this , (phew -haha)
so much to write - i feel great though - really good, happy and myself.
i will be seeing diane again in two weeks.
love to all gailxxx
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Post by monica on Jul 26, 2006 12:38:33 GMT
Hi
I'm glad you've had some answers adn that your cpn/PNI specialist were so good. I think the whole system fails so many women. I eventually attended a PND group which was great adn I wished I'd had that when I was really bad, as it woudl have provided some answers as to why I was feelign the way I was.
The PND specialist said they are currently providing training for midwives so they can be aware of PNI adn act. I think ignorance by teh medical profession is a huge problem as well as thelack of resources for support services. It always makes me angry that I suffered horribly for about 4 mths (and I realise that's much shorter than for alot of women). Help shoudl have been much quicker in coming.
I'm so pleased you're finally gett ign teh hlep you need and that you're making such good progress - well done.
Love
Monica
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gail
Senior Member
have 1 daughter and have had this since 30 weeks of pregnancy :( my daughter is 27 months.
Posts: 373
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Post by gail on Jul 30, 2006 14:46:51 GMT
got sickness and the squits - since we went to a bbq on fri. not sure whether it was too much wine or a dodgy veggie burger anyway feel like shit, shivering and sleeping all the time just got up now since sat morning! not with it at all, feel ok though 'mentally' just scared im going to die, having a few thoughts about me dying and leaving tlws etc because i drank too much or ate wrong thing didnt drink that much though - wasnt drunk at all just trying to have fun feels as though im being punished for trying to enjoy myself
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Post by cheshire on Jul 30, 2006 21:56:16 GMT
Hiya Gail
Hope you feel better tonight/ tomorrowxxxxxxxxx
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gail
Senior Member
have 1 daughter and have had this since 30 weeks of pregnancy :( my daughter is 27 months.
Posts: 373
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Post by gail on Jul 31, 2006 15:13:04 GMT
still ill
think im dying, having panicky feelings/attacks feelings of doom. horrible horrible horrible
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Post by marion on Jul 31, 2006 16:29:07 GMT
Hi gail Hope you feel better soon. Love Marion.
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