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Post by Natalie on Jul 25, 2005 19:18:44 GMT
Just wanted to say hi and that I have seen the specialist with regards to a further pregnancy and, seen as she hasnt seen me since discharging me form the mother and baby unit last February, she has reduced my chance of a reacurrance from 75% to 50/50 , better than nothing!!
We discussed meds and Lithium is an option for the second part of the pregnancy as a preventatiuve meassure - any feedback on that would be appreciated.
Also I have read Elains book and it has spurred me on the get on with mine,
Take care
Natalie
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kate
New Member
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Post by kate on Jul 31, 2005 14:07:50 GMT
I have pp, i think that it is such a serious, acute illness that if you have not been diagnosed with it then you DONT have it. Be grateful you dont. I got it 8 days after delivery and was admitted to a room off a psych ward. I appreciate that you can get hallucinations with regular PNI but this is different, you really are, as they say it "off your rocker". And it does not go undetected because you are so loopy that it is classed as an emergency. I have had regular PNI with my first child and had hallucinations with that, but this was different. it is so extreme that it cant be missed. believe me!
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Post by vikki not logged on Jul 31, 2005 16:03:31 GMT
I'm sorry if I offended you KAte, I just meant that I understood a part of what Natalie had suffered, I was not saying for one moment that I know what it feels like to have PP, but I just wanted to show this lady support.
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kate
New Member
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Post by kate on Jul 31, 2005 17:53:46 GMT
i am not offended, i just want people to not stress that they think they may have pp when they havent. i have had it for 7 months now and it is hell
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Post by Veritee on Jul 31, 2005 23:23:14 GMT
Hi Kate, Vikki, Natalie, everybody
Kate please tell us about your experience of PP - you said it is hell - we feel going through PNI is hell and many on here explain why it feels like hell - do you want to share with us what you are going through - what you have gone through!
Anything you say on here you can be sure will be read by many others and thus - will potentially benefit many others. There are probably many women with PP reading this who feel unsupported – that no one understands
One of the benefits of this forum is that what you say is never wasted.
Even if only one other with PP reads what you say - and is comforted - feels less alone - then it was worth writing about your experience.
And if it helps you to tell your story than it has helped you and maybe countless others
So Kate please tell us what PP means to you!!
What have you gone through that led you to be here on this forum?
What do you need and want to say about your experience - what can you tell others that might help them!!
I for one - really want to hear what you have to say – I want to learn about all aspects of PNI
I hope you will tell us so we can learn about your experience
**************************************************************** But generally: Do not think anyone meant to - or did - offend anyone!
I totally agree that full blown PP is a very serious illness and probably impossible to miss often when someone is suffering it.
If you have PP you will usually end up hospitalised ( or for a few, treated at home under strict supervision) because your behaviour and thoughts etc will be so bazaar and unmistakable that even if you do not seek help yourself, someone will be sure to notice and get you the help you need.
I have been that person once ( ie I called the emergency team for someone, because even with my experience this persons behaviour worried me so much I just had to get basically someone to section this person)
But also many with PNI and not PP do experience visions/hallucinations bizarre thoughts - bordering on PP even if it is not PP.
Vikki ( I hope you do not mind me saying this)
has had audio and visual hallucinations and is on anti psychotics even though not diagnosed as having PP…………….
and I too did experience hallucinations and very bizarre - and for myself veyr frightening thoughts and behaviour - at times I was terrified - many on this forum have had bizarre thoughts, hallucinations, behaviour that has caused concern with PNI and been very , very scared - and yet have never been diagnosed as actually having PP.
I am not a doctor - nor am I medically qualified, so I can not make the distinction between types of PNI ie PP or PND or PNI or baby blues
But I do thing that whatever our actual symptoms or diagnosis we all share a lot - we have a lot in common and a lot to offer each other:::::
We all share that we are ill after having a baby, and that we are very distressed and struggling -many of us have to take medication , many of us are very scared of what is happening to us
- many of us have strangers involved in our lives ie mental health teams , GPs, CPNs HVs - many of us feel like s*** a lot of the time!
often we feel do not know how we are ever going to get through and bring up out children,
There are different types or degrees of PNI - but who is to say if any one person suffers more than another??
I guess it is all comparative - I do not think we gauge our suffering – we can just understand that we all suffer.
I suppose what my standpoint is that?
I accept I am not an expert - and can not make any comparisons between what each individual woman - or what is worse to suffer PP, PND, or PNI or even the Baby blue!
But I do know that we all suffer -and in our own lives - to go through any sort of Post Natal Illness of any kind is a personal disaster!
Without exception what we were all anticipating was the joys birth of a much loved child - and instead suffered PNI.
This forum and site is here to support anyone who has or does suffer PNI whatever their symptoms, diagnosis or experience, PP, PND, PNI etc
I hope that whatever your unique personal experience - we can still support each other and still relate to some of our experiences.
Surely if we have PNI of any kind we have similar problems, issues and experiences as well as differences??
Having said this I realise that those with PP do not feel there is enough support for this experience specifically
So what do you think Kate and those diagnosed with PP of we start a section for PP especially?
let me know - and I will do this!!!
All the best
Veritee
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kate
New Member
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Post by kate on Aug 1, 2005 7:25:42 GMT
There is very little support because it is not common. I have been treated very badly because they just didnt know what to do with me. I am not saying that my experience of PNI is worse than someone elses, i am just saying that true PP is not common and people should not have the added worry of thinking they have that. i am not well enough to tell you my story yet but one day i will. i am living in a nightmare and came to this site out of pure desperation, didnt know things like this existed. i have been poorly for so long that i have lost my touch on reality
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Post by Veritee on Aug 1, 2005 13:02:02 GMT
Please Kate then stay here
I may not have been diagnosed with PP
but I do know what it is to live a nightmare, to feel alone in my suffering - I also know what it is to feel desperate.
( not all because of PNI - if we get to know each other because you stay around perhaps one day I will tell you all of my story too)
You do not have to tell your story if you do not feel up to it- you are welcome to use this site and forum in any way you feel is helpful to you.
Please do not feel that because you have been diagnosed with PP and not PND, PNI, etc - that you do not belong here.
I think what I was trying to say is that you are very welcome here as is any women ( or their partners, relatives ,close friends) who have had a baby and have had any type of post natal illness at all.
you do not have to tell us anything - but can we support you anyway? I know you do not feel strong enough to tell us your story - but do you want to tell us a bit about yourself - how old is your baby, have you a partner how long have you been ill,?
but do not worry if you do not feel you can - just tell us what will be helpful to you.
If we get it wrong with PP it is because we are as ignorant as everyone else about it - but we are very, very willing and keen to learn!
I have often thought that it is strange that while many do get PP we on this forum rarely hear from those who suffered it and there does not seem to be any support available specifically for those with PP!
even the APNI does not have any specific information about PP and yet many of their patrons are medical professionals specializing in PNI - so you would have thought that this included PP.
Anyway I do take on board that women with 'non PP, PNI' should not be burdened with the idea that they have PP - I feel that you knowledge is needed here and while I understand that you are too ill and not yet ready to share what you know
Can we support you in the meantime and maybe one day you will feel strong enough?
I know it is a lot to ask that when you are suffering so much yourself that you help to educate others.
but this is the only way things change - this is a self help forum and I started it because I truly believe that while medical professionals have a big role in treating PNI of all types only if you have suffered it can you really understand how it feels to suffer it.
You have educated me a little by coming on here and telling a bit about how you feel and your position- So can we support you?
Today I thought about starting a separate section for PP and for those with PP to support each other!
Do you think?
Would this be useful to you.
Please let me know.
All the best
veritee
Please
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Post by natalie on Aug 2, 2005 20:51:55 GMT
Dear Kate and everyone
I just wanted you to know Kate that I am there for you as are all the others on here. Unfortunatelky though I seem to be having a bit of a lapse at the moment, I think the thought of actually having another baby and getting ill again has totally freaked me out, as the anxiety has returned ten fold.
For anyone going thru PNI it must be terrible as alot of the symptoms I have experienced are similar. But to totally loose control of who you are, your body doing things it shouldnt, your mind racing from on thing to the next, being scared of even going to sleep incase you dont ever wake up again, words cannot describe how it feels to totally loose your mind. Feeling so trapped inside your own mind and wanting to scream out for help but being paralised.
Even writting this is making me weak, the emotion is so strong.
You all take care and yes maybe if there was a thread for PP sufferers we would be able to share our experiences without worrying about the effect it will have on others suffering PNI. Sometimes I have been more concerned about upsetting everyone else, that I am unable to get all the things I want to get of my chest.
Take care all
Natalie
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kate
New Member
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Post by kate on Aug 3, 2005 15:04:59 GMT
thanks natalie, you said it so well, and said everything i wanted to say, I guess until you have been there then you dont have a clue. it really is total and utter loss of mind and control, two things that i normally value so much. i almost turned back into a baby, i needed so much constant care. i admire you for having another one, i know i couldnt so having the op despite being in early twenties. just couldnt go through it again, but I guess that is because i am still ill. I just wonder when this is going to end
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Post by cheshire on Aug 3, 2005 22:07:42 GMT
Kate/ Natalie
I have no experience of this either as I only have PNI. I did experience hallucinations and voices early on. I actually photographed 'what I could see' and my husband said I was extremely disturbed for a few weeks - 'I' was no where in sight. I can't say everything I did on here at this time ...as I'm sure you understand. .. When I was referred to a psychiatrist - they kept asking me about this - but I kept saying it was only about 2 weeks I had to bear the (whatever it was - but it was there and I could hear it). I defo. did not have PP, but wanted to know if you had anything like this ...
Anyway, just think you are so brave and I only wish I could help.
Take carex
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kate
New Member
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Post by kate on Aug 4, 2005 7:30:19 GMT
you do hear and see things but you are completely not normal. I was a danger to myself and my children because of the things i was hearing so they tried to section me (unsuccessfully because my husband covered up for me) and because i said i'd go into hospital voluntarilly. the thing is with pp is it doesnt just go away, you get steadily worse and worse until you are usually hospitalised. I'm on a cocktail of drugs, am at home but still feel awful. the hallucinations are still so destructive. Unlike natalie i think people are trying to kill me by injecting me. (i think she said she thought she could save the world) so i am scared of closing my eyes so am absolutely exhausted.i think i need help
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Post by cheshire on Aug 4, 2005 8:05:02 GMT
Kate, I wish I could help you. I just can't imagine what you must be going through. Am thinking of you.
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Post by natalie on Aug 6, 2005 18:38:16 GMT
Dear Kate and Hopeful
Kate just so you know I did think that the doctors were gonna drug me up so they could 'experiment' on me and also that they - whoever they were, were spying on me and could read my mind etc...!!!
How old is your littleun, are you on anti psychotics?anti depresants???. I had severe sleep deprevation also, and was given, as well as other drugs, sleeping tablets as obviously without sleep your recovery will be much slower.
With regards to our next baby, we are putting that on hold as the realisation that I could well be ill again in 9 months has totally freaked me out and therefore I have had the worst 10 days of anxiety/panick since the start of this year. Also lack of sleep hasnt helped.
Hopeful - I experienced hillusinations, felt like - you know when you have a nightmare?? and you want to scream or run away - but you are paralised!! Felt like that for around 6-8 weeks. NEw I was ill and needed help, was trapped inside my own mind/body. Mind race, race, racing all the time, predicting my demise so avoiding falling down the stairs, drowning etc... scarey stuff - Plus funny hillusinationlike jumping in chalk pictures, like in 'Mary Poppins' But all very real.
Thanks you to all the ladies who are supporting on here its nice to know that there are people out there who can empathise with us.
Sorry for the jumbled message, but its a very hard thing to put across in typed words
Take cara all
Natalie
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k
New Member
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Post by k on Aug 7, 2005 7:43:41 GMT
I an relate to everything you stay. am on anti-psychotics, anti-depressants and sleeping tablets but my daughter is teething so got to get up in night so cant take sleeping tablets at the moment. the hallucinations are so vivid and real. i am confused by what is real and what isnt.
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Post by natalie on Aug 8, 2005 12:41:00 GMT
Dear K
When I was in the Mother and Baby unit and they had given me sleeping tablets, some of the 'bank' staff would wake me up and tell me to feed my baby - what were they there for if not to help a poorly patient with the care of a child while mum is so exhausted??!!!
Teething is a trying time with the disturbed nights, cant your partner take care of it every other day so you can get the sleep you so badly need to speed up your recovery.
I know how sometimes the fact that they have to go to work in the morning can make you feel terribly guilty asking them to help, but you must as the sooner you are back to you the better for everyone.
Take care honey, maybe if you are around tonight we can chat in real time, if you arn't having a well deserved early night.
Natalie
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