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My story 2 years on

Jenny_at_APP profile image
Jenny_at_APPPartner
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My son has just turned 2 which means another, less enjoyable, anniversary is looming. To mark it I thought I'd share my story, such as it is so far.

I've always wanted to be a mum, it's the one thing I've ever been completely sure about when it comes to life plans and ambition. I had a good pregnancy. I enjoyed being pregnant. I didn't read any books, I did do NCT and NHS antenatal classes, and breast feeding workshops. One thing I was sure about, I was going to breast feed. Breast is best! My mum exclusively breast fed me and my siblings, my sister exclusively breast fed her children. I tried not to put too much pressure on myself but I was determined to try, was under no illusion that it was necessarily going to be easy, but I would persevere.

Anyway, I got through pregnancy without any problems and prepared for a natural birth. Luckily that went smoothly too and I gave birth to a healthy baby boy 21 hours after my first contractions started. There was a bit of panic towards the end and he was born with the umbilical cord wrapped around his neck but he was fine, I was fine if a little battered and bruised and we were now a family of three. My son latched on to my breast without any problems, he was hungry from the off and seemed to know what he was doing. So far so good.

From the start I was anxious about the feeding. I don't know when my level of anxiety became greater than would be normal for any new mum but it was always there despite things being fine. I needed regular reassurance that I was doing it right and kept lists from the very start - which breast I fed from, at what time, for how long (to the minute), whether the subsequent nappy change was wet/dirty and any other observations. As the days went on my world centred around feeding, completely normal for life with a newborn but as my thoughts started to become obsessive, this was my focus. I was sleep deprived like any new parent, had lost a night's sleep to labour and now snatched a couple of hours here and there, day and night, again nothing out of the ordinary, but 3 weeks in and insomnia hit. I couldn't switch off and my anxiety levels grew. My husband was doing all the right things; he would take the baby downstairs and tell me to sleep, that he'd bring him to me when he needed a feed. I would lie upstairs, wired, terrified my husband wouldn't wake up when my son needed me. It was my sole responsibility to keep our tiny baby alive... In the evenings our son cluster fed for hours and the night feeds were regularly taking an hour and a half with little down time in between. I became convinced this prolonged feeding was due to a poor latch, I would repeatedly take him off the breast and try to get him latched on better, making me more sore and him more frustrated. I did away with the lists when I decided I was inadvertently 'doing Gina Ford' despite the fact I'd never even seen one of her books. 'Watch your baby, not the clock' all the websites said. I was spending time trawling websites and forums while feeding in the night; so much information, too much information. The evening crying set in and I started reading the one book I had been given that I'd avoided til now, all advice seemed to conflict and further confused me. The simple fact that I didn't know and couldn't work out why my baby was crying convinced me I was already a terrible mother. In my addled, sleep deprived state I started behaving strangely. I was lost without my lists. My reassuring family kept saying 'You're doing everything right, just keep doing what you've been doing' but I couldn't remember what I'd been doing. We'd change a nappy and I would have no idea whether I'd done half a feed, no feed at all yet or had finished. My husband was physically putting our son to my breast and was growing increasingly concerned. Then I decided I could communicate with our son and read his facial expressions sufficiently to know that no, he wasn't hungry. I would refuse to feed him because, despite the rooting and head butting, that particular pout meant he wanted to play. This behaviour came on very rapidly, and at the same time I was ever more anxious, confused, unsettled and distracted. It was the Saturday evening that my husband called the maternity unit for advice. Luckily he spoke to someone he knew and they said they'd see me. I talked round and round in circles to a sympathetic midwife then a paediatrician who advised a hot bath, Horlicks and a good night's sleep. It was after midnight when we got home. I had a bath and a couple of hours' sleep where I dreamt I was living in a cave, my baby always next to me, feeding when he needed to. I woke up and proclaimed "I've cracked it! I just need to feed him every 8 hours for 3 hours, it's all about the maths!" My husband eventually managed to get me back to the maternity unit. I was a bit of a state, nothing made sense to me anymore, I was pacing around and alternating between utter confusion and the knowledge that something wasn't right, to then declaring I was fine, I just needed some sleep. But a realisation had started to creep in and it was breaking my heart. It was the belief that babies only grow up when you're not watching them, that if I constantly watched my baby, he'd stay a baby. I therefore couldn't sleep as if I did, he'd grow up. I also believed that this was a realisation every mother had to come to, that everyone else 'got it' and accepted it straight away but I couldn't and was therefore trapped in some kind of loop. It was this that I tried to explain to the midwives who now looked at me with concern (but when no one was watching, they would whisper to me that as mothers they'd all been there, they'd give me a knowing wink or nod). A mental health nurse came to talk to me, I knew something must be wrong. I was still convinced I just needed reassurance about the feeding, that if someone just spent a day with me and told me I was doing everything right, my anxiety would disappear and I'd be fine. She told me about a unit where they were used to this kind of thing, that they did things 'a bit differently'; I agreed to go. My parents arrived and I paced around the room saying "I'm a nutter, they're sending me to the nuthouse!" I overheard them discussing the fact I had insight. I knew I must be onto something. I declined rapidly, every bit of rest and sleep I got made things worse. I started to detach from reality. I stopped wanting to feed my son. This meant they could sedate me but I reacted badly to the sedative they gave me. It wasn't long after this that I snapped, I was gone, my mind no longer my own.

What followed was terrifying. So many different threads to what was playing out in my head, all fighting for dominance. I remember the vast majority of it now though not necessarily in the right order. But the overwhelming belief on this Sunday in the maternity unit was that I was having all the babies. Surely influenced by the sound of newborn babies around me, I was giving birth over and over. I had a choice but knew if I stopped something terrible would happen. I would persevere where so many had stopped, most women managing just two or three. People were saying they had underestimated me, they hadn't realised how strong my maternal feelings were. I was Mother Earth, I was the chosen one.

My delusions were very influenced by books I'd read, television programmes I'd watched, especially science fiction. Time travel featured quite heavily. Mirrors and reflections, the alphabet, the 'circle of life'. I was creator, whatever it was that I wasn't 'getting' was the key to saving the world. I could describe it all in quite a lot of detail but this isn't the place and I've already gone on far too long,

The Sunday night in that maternity unit was by far the worst night of my life. The next morning I was transferred to the mother and baby unit. Here with different surroundings my delusions and beliefs changed. The signs around me all had hidden meaning, everything was a clue. I was language, I was colour. Was there a baby? Was I the baby? Had my baby died, was this madness grief?

As I started to react to medication the delusions lessened (aside from a lingering suspicion that I controlled the weather) but the intense confusion and paranoia remained. There was still a code to crack, an answer I had to find, a reason I was here. I became convinced everyone else in the unit, the other patients, the staff, were all actors. Was that what they meant when they said they 'did things a little differently' here, was it all some kind of big role play? Whatever it was, everyone was in on it. But I had to find the answer myself. At times I was convinced I was in some kind of social experiment, that I was being filmed; I would shower half-dressed, convinced there were hidden cameras. And the television and newspapers in the lounge terrified me; everything was about me, hidden messages in every word and picture. My other certainty was that I had to prove I was a good enough mum before they'd let me go from this place. They were always watching, judging me and I was so confused and muddled, making up a bottle was my Everest, a nappy change would bring me to tears. My son had a rash one morning (not that I could really see what they were talking about) and we were taken to the general hospital. To me this was some kind of test, how would I cope with this unexpected event being thrown at me? I was very proud to make it through, surely I'd passed...

There's so much more to tell, I'm writing it all down elsewhere, but the important thing is I got better.

My first day of leave home was a massive turning point in my recovery. I knew my brain couldn't construct the journey between the unit and home. Things slowly improved, I started to return. The paranoia and confusion lessened day by day, I started communicating with the outside world again. And exactly a month after my admission to the unit I was discharged home.

My recovery was swift. Determined to get back to 'normal' I think I played at it when I didn't feel it. I didn't feel completely normal until I came off the antipsychotics 15 months later. I still feel sad that those early weeks weren't the way they should have been, that even towards the end of my stay in the MBU I couldn't just pick my baby up and cuddle him without fetching a member of staff first. I hate the fact I'm torn about having another child. But mostly I know how lucky I am. I was in the right place before my downward spiral crashed, I was in the MBU the following day, I reacted to medication quickly, I had great support from my husband, family and friends, I was spared the depression that hits so many afterwards. I have a massive appreciation and sympathy for people who suffer mental illness, I know what it's like to literally 'lose your mind' but to be lucky enough to see it return.

The journey's not over yet. It's taken a long time to process it all and a long time to overcome the guilt and feeling that it happened because I couldn't cope. But when I think where I was this time 2 years ago, I know how far I've come.

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Jenny_at_APP
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27 Replies
Lily54 profile image
Lily54

Thank you for posting this. I am so pleased to hear how much better you are doing,

I simply cannot believe how your experience is so much like my daughter's, in fact it has been wonderful for me to read your post, it has given me a greater insight into what my daughter went through, the parts that , at the time she could not communicate to me, and now 6 months down the line , prefers not to talk about.

I still don't always know what to do for the best, I try just to be there when she needs me.

Jenny_at_APP profile image
Jenny_at_APPPartner in reply toLily54

Thank you for your reply. I'm so glad you found my story helpful. It sounds like you're so supportive of your daughter, I'm sure your being there is such a comfort to her. My mum has been a quiet but constant support to me and it means so much. We all have to process our experience in our own way but thank goodness for our mums, that steadying hand to grab when we stumble.

Very best wishes, J x

BronSyd profile image
BronSyd

Wow. So many of the things you've written are so similar to my experience. I too was lucky to have a fairly quick diagnosis and recovery with great support.

Your delusions and anxieties are almost like reading my own story.

I too at some point thought my behaviour was due to not coping with the death of my child. Luckily for us this was not the case.

I remember thinking that I was going back in time when I was first admitted to the psych ward. Partly because it actually looked like it was from the 1950s and partly because I had to give up my phone as it had a camera and as we all know phones in the past didn't have cameras. I've always found it quite fascinating how ones brain attempts to interpret the chaos.

I also thought that those around me were acting. It was in an attempt to have me forget my birthing and newborn experience. Not that it was particularly traumatic just that my mum would say that she couldn hardly remember it so I assumed that we must all have to forget it.

I'm about a year ahead of you. My son turned 3 in April. We decided to have another child and I've loved being able to be more aware during the early stages. I did have a slight slide into early mania but we got on top of it very quickly with meds and have gone on without any other issues (pp wise anyway).

It's always great to hear others experiences and I'm sure it's been a great healing tool for you as well. I did the same thing just before the birth of my daughter last October.

Thanks for sharing.

Jenny_at_APP profile image
Jenny_at_APPPartner in reply toBronSyd

Hi BronSyd,

Thank you. It's so good to hear you went on to have another child without too much trouble and were able to get on top of things quickly.

I find it fascinating too, what a very complex thing the brain is! My earliest memories (though difficult to tell which were true memories) were surfacing as everything that had happened in my life up to that point was significant and had been preparing me for whatever 'this' was. How things could make so much sense but no sense at all at the same time. Fascinating yet terrifying!

I have been writing it all down in much more detail for a while now and do find it very helpful but very hard. It's so nice to know everyone on here understands.

Thank you x

Lilybeth profile image
LilybethVolunteer

Hello J-B-55

I'm very impressed that you have remembered so much in great detail, especially as it must have been such a frightening time. As I had the pleasure of meeting and chatting with you at the APP day, you may recall that my memory of 'events' was patchy as my illness was not spoken about. However, like you, I well remember the guilt I carried, as I didn't have a diagnosis, that it happened because I couldn't cope.

I think it is an anniversary to celebrate how far you have come, supported by your husband, family and friends. Be good to yourself ....... welcome to this exclusive band of mothers!

Jenny_at_APP profile image
Jenny_at_APPPartner in reply toLilybeth

Hello Lilybeth,

Thank you so much. It was such a pleasure to meet you at the APP day, I can't imagine what it must have been like going so many years without a diagnosis and not knowing what had happened and why. It was so important, and helpful, for me to try and understand the illness (as far as we can).

I remember pretty much everything of my experience, which isn't always a good thing! It's been so helpful reading about other people's experiences so hope to 'pay it forward' with mine.

An exclusive band indeed!

x

Lilybeth profile image
LilybethVolunteer

Hello J-B-55

Thanks for taking the time to reply. I have also found the forum a good source of information and interest. Some time ago I was intrigued to read the post 'Delusions of Grandeur and other religious experiences' which you have probably read. It was in a strange way a 'comfort' for me to read of experiences far more out of this world than mine had been.

As you say, everyone here understands. Hopefully in time PP will be recognised so that a tragedy. such as that of the young mother who fell from Whitby cliffs last year following the birth of her daughter six days earlier, will be prevented.

Take good care.

andrea_at_app profile image
andrea_at_appVolunteer

Hi J-B-55,

Thank you so much for sharing your story, I know how difficult they can be to write & how hard it can be looking back but also how much it can help to finally tell it – I hope you found it a comfort in some way.

You describe your early symptoms so clearly & bits are very reminiscent of my own, the anxiety that escalates into total fear, the building confusion, inability to sleep etc I can’t believe with all those early symptoms clearly showing, you were told to have a hot bath, Horlicks and a good night's sleep!

In the early years, the Birthdays, which should be happy occasions, are really poignant because they’re an annual reminder of everything we went through. In the early years after recovery, I was always far more emotional & thoughtful when a Birthday was coming up, but now I just focus on the special day exactly as I want to - I do think that as time goes on, the awful memories fade.

Yes, it’s a long, hard journey but yes, you've come so far! I agree with Lilybeth, that that’s certainly something to celebrate too! :-) x

Sarah2015 profile image
Sarah2015

Your memory of your experience of PP is startling! Reading this brought back some of the things that happened to me. My memory is addled. I hated the MBU and found it a very confusing place to be. My delusions were very grandiose, I was going to save the world. I too have thankfully never suffered from the depressive side of the illness but I feel I have changed since the illness -I'm not as feisty. My confidence was crushed and it's left me a little more meek.

I was floored when I found myself back in the MBU ten months later with a relapse. But four years later after the birth of my second I was grateful to the MBU for looking after both me and my second while we were both well to ensure we stayed well. I knew exactly how to behave that time and did everything that was expected -they were great! One evening they even babysat while my daughter and husband ate a lasagne I'd cooked.

Jenny_at_APP profile image
Jenny_at_APPPartner in reply toSarah2015

Hi Sarah2015,

It's been a while since I've read that post!

Yes, although I can see how beneficial being in the MBU was now, at the time it was so confusing. I spent so much energy trying to figure out the meaning and significance of everything and why I was there.

How long did you stay in the MBU with your second? It's something that's been offered to me too, I've not thought about if properly yet but it's reassuring to know the option is there.

Sarah2015 profile image
Sarah2015

I would highly recommend taking up their offer. I was there for two weeks -the supposed danger period. They just took my daughter away every night and I slept blissfully. I became institutionalised quite quickly and one nurse had to check I was allowed to go to Asda on my own. It was all kind of therapeutic -I even went to to the sessions that I thought were ridiculous originally. It was really interesting to see everything from a 'well' perspective. The great thing is you can transfer straight after birth and you can discharge yourself at any point.

Hannah_at_APP profile image
Hannah_at_APPAdministrator

Hi J-B-55, I'm not sure I read your post originally, and like others there are such similarities with my own pp experience, it is bizarre! And must have been therapeutic to get it all down. I did something similar on a Word doc which I know it's good to have should I ever need or want it.

The offer of a MBU stay after your 2nd birth sounds positive and I know I'd have probably jumped at it, sadly there's no unit close to me and this was never offered (or thought of by professionals I think) when I had my 2nd a couple of years ago now. It's a very personal choice and just having it as an option must be reassuring, also Sarah2015's experience is good to hear and will probably be helpful to you.

Take care, xx

Mirrorball profile image
Mirrorball

Really enjoyed reading your account. Lots of similar sensations to what I experienced!

pinkladystar profile image
pinkladystar

It was eye opening to read ur story and know that even though I am in a very dark place atm it will eventually get better

Lilybeth profile image
LilybethVolunteer in reply topinkladystar

Hello pinkladystar

Lovely to meet you here and thank you so much for reaching out after reading Jenny’s story.

I’m sorry to read that you’re in a very dark place atm. Can I ask if you’re recovering from Postpartum Psychosis? I also had PP many years ago and can remember how dark some days were for me. With good medical care and support it will eventually get better and we are all here to lean on if you would like to write again. Thinking of you .... be kind to yourself.

pinkladystar profile image
pinkladystar in reply toLilybeth

Thank you for replying to my post i appreciate it

Jenny_at_APP profile image
Jenny_at_APPPartner in reply topinkladystar

Hello pinkladystar

Welcome to the forum and thank you for reading my story and reaching out.

I’m so sorry you’re in a very dark place at the moment. I hope reading my story and others here is helpful. This is a safe space where you can share your thoughts and feelings and ask questions if you’d like to - we’re all here to listen 💜

Take good care.

Best wishes,

Jenny x

Lilybeth profile image
LilybethVolunteer

You are very welcome pinkladystar. It takes a lot of courage to write here when you are not in a good place so I appreciate your reply too.

This is such a safe space to talk. When I found the forum years ago I was so comforted by everyone who understood how I felt and what I was going through. Take care.

pinkladystar profile image
pinkladystar in reply toLilybeth

Thank you so much really appreciate it

pinkladystar profile image
pinkladystar in reply toLilybeth

I just really wanna feel better and I have a good couple of weeks when they change my medication and then I come crashing down to an all time low x I have amazing support from peer support workers and I just want to do them proud and come out the other side but just seems so far away

Lilybeth profile image
LilybethVolunteer in reply topinkladystar

Hello pinkladystar

I was the same with my medication and it took a while for my care team to find the right balance that worked for me. So, as long as you keep talking to your peer support workers they will be able to let the doctors know what works for you and what doesn’t.

Try not to be so hard on yourself although it’s not easy when you are feeling low. I’m sure everyone is proud at how you are fighting to be well. I remember the days of feeling helpless and hopeless, trying to lift myself up. Eventually I came out the other side, as you will too. Just hold on to hope and keep talking about how you are feeling. These days it’s ok not to be ok .... so while you might have a way to go, please be very proud of how far you’ve come. We are here for you, take care.

pinkladystar profile image
pinkladystar in reply toLilybeth

I'm waiting for my medication to be changed but it cnt be at the moment because about a month ago I had a mini heart attack so they won't do anything g with my meds until I have beenseen by cardiology but I really need my meds changing

Lilybeth profile image
LilybethVolunteer in reply topinkladystar

Ooooh I’m so sorry to hear about your mini heart attack pinkladystar. I think that in itself must have been a lot for you to cope with. I hope you will be seen by cardiology soon so that your meds might be changed.

pinkladystar profile image
pinkladystar in reply toLilybeth

Yh it was its been non stop since the birth of my daughter

Lilybeth profile image
LilybethVolunteer in reply topinkladystar

Hello pinkladystar

Sorry my connection faded .... It must have been so much all at once for you. Congratulations on the birth of your daughter! It’s not easy to ‘take it easy’ with a newborn but I hope you are finding time for yourself. Take care.

pinkladystar profile image
pinkladystar in reply toLilybeth

My daughter is 15months old but its been non stop since she was born m.

Lilybeth profile image
LilybethVolunteer in reply topinkladystar

Oh yes pinkladystar, I’m sure at that age your daughter is a bundle of joy and full of energy. I think that coming to terms with your mini heart attack must have been overwhelming and it’s good that you have amazing peer support workers around.

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