Category Archives: Personal Experiences

Nicola’s story: I had to leave my dream job to look after our baby

Personal Experiences, , ,

My partner, Arina, was only in the MBU for a couple of months when she was discharged. It wasn’t that she was well enough to come home, it was because they said she wasn’t making any progress. Our baby had already been discharged, and I had taken time off work to be a full time parent. But then when Arina came home as well, I realised that there was no more support available to us and I had to leave my job as an ambulance care assistant – something I had worked so hard for.

It was December when Arina gave birth to our daughter. I hadn’t realised that there was anything wrong at first. Our baby cried a lot, and we were told she had reflux so Arina was naturally anxious and, because I’ve got three older children, I just put it down to it being early days.

Arina had struggled with mental health problems prior to giving birth, and she had been diagnosed with BPD (borderline personality disorder) which is a serious mental health issue that can cause overwhelming, distressing and changeable emotions.

When I was due to return to work after our baby daughter was born, Arina mentioned that she was feeling really anxious. It was New Year’s Day and, because I was expected in work on the 2nd, I contacted Arina’s sister who lived a couple of hours’ drive away to ask if she’d come and stay, which she did. However, she contacted me at work saying she was concerned about Arina who was really struggling and distressed, and she suggested she could take the baby for a couple of nights so that we could get Arina some help.

I reluctantly agreed, and we contacted the crisis team, who came out to see Arina but they weren’t very helpful – simply suggesting that she take a bath, have a cup of tea and get some sleep. But the problem was she couldn’t sleep. And I could see that she was incredibly vulnerable.

We were due a visit from our health visitor so I collected our daughter from Arina’s sister’s and brought her home. I was at work on the day of the visit, but they called me and said I needed to come home otherwise they would need to remove our daughter. They felt that it was unsafe to leave Arina and the baby alone as they suspected Arina had postpartum psychosis. I went straight home as they tried to find an MBU to get the care Arina clearly needed. However, it was a real struggle because the crisis team maintained that she didn’t need help.

Eventually, we managed to get Arina in to see the GP – she was incredibly anxious by this point. The GP agreed that Arina needed help and, the following day, we finally got the call saying that she could be admitted to the MBU.

Because of Covid, I literally had to drop Arina and my daughter at the MBU door, which was heartbreaking. Leaving your partner and daughter, not knowing how they might settle in or where they were going to sleep, was really difficult. I had also developed a really strong bond with our baby so it was difficult being separated from her as well having previously spent 24 hours a day with her.

The MBU was about a 45 minute drive away from our home as well, so I was having to work full time and travel every day for the one hour a day visit, and it was emotionally and physically draining.

After about a month, I was shocked when the MBU suggested our daughter should come home with me. Arina had mentioned that the MBU staff were still carrying out most of our daughter’s care, and they suggested that Arina needed some time on her own. I was worried because I needed to work to bring the money in, and also because I thought Arina should have the opportunity to bond with our daughter.

I arranged time off work, thinking it was just for a few days but, as time went on, nothing was mentioned about any plans for our daughter to return to the MBU. I was taking her back and forth every day to see Arina and then looking after her the rest of the time on my own.

I had been working with the Ambulance Trust and had only just started the job in the October, so I was devastated at having to take so much time off. Eventually, I was told by the MBU that Arina needed to be referred to an adult psychiatric ward for further treatment but that they couldn’t find a bed, so she would need to come home. We were told at that point that we would get some childcare support to enable me to go back to work part time but nothing materialised.

So, after two months in the MBU, Arina was also home, and I left my job and had to claim benefits to keep us going. Arina applied for PIP (Personal Independence Payment) but that was eight months ago and we still haven’t got it so we are relying on basic benefits – other than £5 a week for baby class. We just feel as though we have been left completely on our own.

It’s quite difficult, as a same sex couple, to access support because everything for partners seemed to be targeted at ‘dads’ or ‘fathers’. I couldn’t see anything that felt it might include me. However, during a conversation with an old friend who I discovered had herself been in an MBU, she told me that she’d seen a story on the APP website about a same sex couple so I had a look straight away and reached out to Ellie from the peer support team.

Since meeting Ellie, I’ve been put in touch with another female couple and we’ve been in contact regularly, texting back and forth, and it’s been a lifeline. It’s just so good to have someone you can actually relate to.

There are still challenges we are facing because of our situation though. For example, because I’m not on the birth certificate I have to adopt our daughter, so being classed as a full time parent I currently have the responsibility but not the legal rights, so I can’t even open a bank account for her or register her with a nursery. This is really tough because Arina is still struggling with her mental health as well. And, on the flip side, the social workers have told us that, once I adopt my daughter, they will no longer be able to support us at all – so it feels like a lose-lose situation.

The thing that keeps me going, however, is reading the stories of others, and speaking to Ellie and the couple that APP put me in touch with. While everyone’s experience is different and unique, there is always something you can relate to. It makes such a difference knowing that you’re not alone.

 

How one family’s history inspired a theatrical exploration of postpartum psychosis

News, Personal Experiences,

We spoke to Company Four founder Gemma Whiteley about how her ancestral research inspired a theatrical exploration of postpartum psychosis. Here’s what she told us:

My mum had watched a lot of Who Do You Think You Are? on TV and it sparked her interest in our own family history. One of the things she was really keen to find out more about was her grandad Jack, my great grandad, because she knew he had been raised by his grandmother rather than his mother. We’d heard that his mother, Mary (my great, great grandmother), had died of pneumonia when Jack was a young baby.

However, as we started to delve into our family history, we discovered that this wasn’t actually the truth…

My mum managed to get hold of some records relating to Jack’s mum and one of the files she managed to find was her death certificate. I remember being upstairs and my mum shouting up at me to come down and take a look because something didn’t add up.

My mum showed me the certificate and I remember she seemed confused and said ‘am I reading this right?’

 The certificate stated that the place of death was Cheddleton Asylum – so we obviously thought that was unusual because we didn’t believe people were put in an asylum for pneumonia – even back in 1900 when Mary passed away. So that led to us asking the asylum for the relevant records to find out more.

They unearthed three or four pages of information and documents which they sent on to us. When we read them we learned that Mary had what they then called ‘puerperal mania’ – which we now know as postpartum psychosis (PP).

The documents were quite detailed, telling us how Mary was behaving, what she was doing and saying. For example, it said she was throwing books out of her window and saying she could walk on water. And of course it mentioned Jack, and how Mary’s mother was the person who raised him after taking Mary to the asylum.

The notes also painted a picture of who Mary was as a person before she became unwell. She was a dressmaker, she had kicked her husband out for being a ‘ne’er do well’ and was often a naughty child who played truant from school. She worked in factories from the age of 13 and seemed to be full of life, somewhat ahead of her time and extremely strong-willed. Her mother painted a very vivid picture of how strong she was growing up.

In terms of her illness, however, it sounded as though her case was really acute and she wasn’t getting better at all, but the only treatment we read about was sedation.

An old picture of Jack seated in a chair taken before he joined the army
Jack before he joined the army

But even though we look back on these notes, wondering why the only treatment she was given was sedatives, it’s interesting to remember that, back in the day, that would have probably been considered the right treatment for her symptoms. In fact, the doctor who was looking after her became known as a leading expert in maternal mental health. Speaking with experts now, however, we know that the sedatives would have stopped her sores from healing, so they will have ultimately had a detrimental effect on her at the time. And of course sedatives alone do not tend to cure symptoms of psychosis.

Mary was just 27 at the time of her death.

A theatrical exploration of PP

Through my theatre company, Company Four, we do a lot of devising work, exploring new ideas and themes to take to the stage. My Company Four partner, Suzi, had mentioned mental health as a possible next topic and I shared our newly discovered family story. We were both equally intrigued and decided to take it further.

I had some pre-conceived ideas about what PP was, but finding out what happened to Mary made me realise that I hadn’t been well informed at all. Suzi agreed that she didn’t know much about PP or about maternal mental health generally so we were both really interested in learning more. And being able to tell a story about a different time – the 1900s and the asylums – was also an exciting concept, as we could explore the difference between then and now.

We did our own research and we also worked with APP to speak to women with lived experience.

What we discovered was that, while there were lots of differences all those years ago, for example the name of the illness and the types of treatment, some things haven’t changed. We found on speaking to women that far too many births are still difficult and traumatic. We also found that PP, particularly, seems to be something that people are worried about discussing due to the stigma that surrounds it. Many people seemed to react with fear or worry when we told them what we were making a show about.

Members of Company Four, seated and standing with a puppet between them representing baby Jack
A rehearsal picture with a puppet as baby Jack

Working with real experiences and voices of people from the APP network, we developed performance material and shared this with an invited audience for feedback. We used performance and audio recordings and puppetry, and we’re now looking at how to take the story further, so we are seeking a commitment from a venue to host a production, and funding to produce it as a full length piece. It can be a long process putting on a production, but it’s also been an exciting and life-changing process – I’ve really changed the way I feel about motherhood and speaking to the women and them sharing their stories with me is something I’ll always hold close to my heart.

We honestly had no idea just how emotional a journey it would be, but we’ve had lots of fun and laughter along the way too. Now we just need to get those funding bids in so we can continue to play our part in raising awareness of PP. And we really hope the audiences walked away from our initial sharing with more understanding and less fear.

To find out more about Company Four’s R&D process and to view more of the photography, visit the web page here

 

 

 

Alexander’s story: I felt as though I’d failed as a husband

Personal Experiences, ,

It’s hard for partners – and men generally – to admit there’s a problem that they just can’t fix themselves. But when my wife became ill with postpartum psychosis (PP) and continued to struggle for many months, I felt as though I’d failed as a husband. In reality, we simply didn’t get the help we desperately needed as a family.

We’ve got two boys. Our first son was born in 2019 and everything was fine with the pregnancy, but when it came to the due date things started to go wrong. It was all a bit traumatic and when he was eventually born many hours later he looked like he’d gone ten rounds with Mike Tyson - all bruised from the forceps. Then the first three weeks were pretty full on as we were in and out of hospital and with all the trips to the hospital, I was pretty much living in my car.

While my wife was in hospital she was really on edge and worried about everything – especially cleanliness. She was cleaning the hospital room constantly and not sleeping.  But nobody really noticed anything because we were kind of just left to it.

After three weeks she finally came home. However, we were due to move when our first son was six weeks old, so there was a lot of packing, people coming and going, we were both tired and worn out.

When we moved and I started my new job, my wife seemed to be doing really well on the outside, going to mother and baby groups and things. But in the background she was struggling with postpartum psychosis – and I had no idea.

I’d come home from work and ask how things were and she’d tell me things were good and tell me little stories about the mother and baby groups – but I know now that she had stopped going.

Around this time she became really worried about locking all the doors and checking the windows, and she became convinced that somebody was outside the house watching and waiting for her. Plus, I didn’t know it at the time, but she was convinced that I was trying to poison her, and she could hear sounds that weren’t really there, like the phone ringing when it really wasn’t.

Because my wife is a midwife, I think she knew what to say and how to behave to keep her problems hidden and to make everything seem OK. But it really wasn’t.

A few months later I was at work when my wife rang me begging me to come home and look after our son. When I got home she was sitting on the sofa with our son asleep in her arms, but she was stuck in this circle of changing emotions. She was happy, then she was crying, then she was angry and then she looked terrified. She kept looking behind her as well as if she thought somebody else was there.

I tried to talk to her but it was as though she just wasn’t there. So, not knowing what to do, I called 111 and told them I thought my wife was having a mental breakdown. They advised us to go to the GP and I managed to get her in the car, but once we were in the waiting room, even though we were only there for a couple of minutes, it felt like the longest time ever. She was crying and going through all these emotions and people were looking.

When the doctor called us and we walked down the corridor we got half way before she stopped and screamed. She began clawing at the wall, wanting to get out. When we got into the doctor’s room she wasn’t able to speak, and they immediately referred us to the crisis team, telling us to go home and wait.

After we got home, my wife started coming round and snapping out of it a little. She asked me what had happened so I explained it all to her.

The crisis team, a man and a woman, came to visit the house the next morning but the man was really unhelpful, not listening to my wife and interrupting her when she was trying to explain the feelings and thoughts she had. They left, said they’d follow up, but we never heard from them again. And things carried on much the same with my wife feeling paranoid and anxious.

Eventually, we tried for another baby and my wife fell pregnant with our second son. When she went to book in with the midwife and told her everything that had been happening the midwife was like woah stop, that’s not right.

She immediately referred us to the perinatal mental health team and it was only then that we started to get proper help.

Within two days we had a mental health nurse visit, who said that my wife was suffering from postpartum psychosis. We were both quite upset, but it was also a relief to know that there was a reason behind everything that had happened.

They put her under their care, came every week, put her on medication and sorted some therapy, saying that the main goal at that point was to get her through the pregnancy and that after the birth, they’d review things.

After the birth things started off really well and her medication was changed which seemed to stabilise things. But then one week things suddenly went back to the way they were, with my wife convinced there was somebody in the garden and feeling really terrified. This time we had a consultant to call and they came out the next day and told us that it would be best if my wife went to a Mother and Baby Unit (MBU).

We were both shocked and upset, my wife was crying. But the consultant said we needed proper help.

I remember her looking at me and saying that she could see that I was drained and that I couldn’t do this by myself anymore and she was right. I’d held the fort for two years.

My wife wasn’t keen but eventually she agreed to go willingly. It was during the pandemic, so I wasn’t able to go in with her and simply had to drop her off. She was able to keep our second son with her but not our first son, but I was lucky in that my employer was really supportive, telling me to stay at home, look after myself, my sons and my wife.

Eventually, my wife was discharged and she’s been on the up ever since. She’s now off her medication and is back to herself and doing great, and being a brilliant mum.

For me, not knowing what to do, it felt like the worst rollercoaster ride ever when we were in the midst of her illness. I didn’t have a clue what was really going on, then when I found out how she had been feeling I felt like I’d failed, and that I should have known. I beat myself up for a long time about it but I did eventually seek help for myself, and I got some counselling, which really helped.

The perinatal mental health team signposted us to APP and, when we felt ready, we joined the forum and began talking to other people who’d been through it.

Peer support makes you know you’re not alone.

And it provides ways for you to give back and help others. It’s a big thing for me and my wife to have that opportunity, to try and help somebody else.

 We’ve also had our experience of services investigated - this was something the perinatal mental health team instigated. And we now know that our experience is going to be talked about in health professional training – another way in which we are able to do our bit to stop anyone else having to go for so long without getting the diagnosis and help they need.

Finally I’d like to say that, for anyone else who is supporting somebody with PP and struggling, know that it’s not your fault. And look after yourself. Just because you can’t fix this on your own it doesn’t mean you’ve failed. It’s hard to admit that you need outside, professional help but make sure you let somebody else in. You don’t have to do it alone.

 

 

Joanne’s story: “It was heartbreaking to be separated from Joshua”

Personal Experiences, , ,

Joanne from Northern Ireland experienced postpartum psychosis in 2008, 13 weeks after giving birth to Joshua, her fourth child in five years. Joanne shared her story with APP and journalist Kate Skelton:

Unfortunately the birthing experience in hospital with my third child had left me traumatised. I suffered horrendous neglect during labour and up until delivery I didn’t know if either of us would survive.

In total contrast, and in a different hospital, Joshua’s birth could not have went better, which was such a relief for me. But at seven weeks old he was very ill and contracted bronchiolitis. He wasn’t breathing very well and needed urgent care so I had to take him to the hospital where I had been previously traumatised. He was admitted straight away and we were put into an insulation ward.

I now know I was being triggered and started reliving my traumatic birth experience.

I was petrified as I didn’t feel safe there - I didn’t sleep, I was worried sick about my baby and kept hyper vigilante to make sure Joshua was okay.

Thankfully Joshua got better and we were discharged.

It wasn’t until six weeks later during a visit to my parents for their wedding anniversary celebration that I began to experience symptoms.

I started to feel really cold and suddenly my feet and legs went numb. I told my parents to call an ambulance. Soon I was completely paralysed and I was unable to speak.

My Mum thought I was having a stroke. I got blue lighted to hospital - and yes, you guessed it, back to the one where I had been traumatised. My body went in and out of paralysis, I was hallucinating and my speech was incoherent. Something was badly wrong with my brain but the professionals had no idea what was going on. Soon I was displaying symptoms of mania and psychosis and had to be sectioned and admitted to the local psychiatric ward.

I clearly remember being surrounded by at least 12-15 members of staff, physically restrained, forcibly dragged and then thrown into a van that transported me to the locked ward. I must have been sedated as I woke up on the floor of the ward hanging onto the leg of a chair and the shoe laces of a male member of staff. I was a pathetic sight.

I kept asking  ‘where is my baby?’ but no one told me anything. I was terrified, helpless being separated from my family and now surrounded by all the other severely ill female patients. One young girl had obviously been self-harming and had injured herself by shaving her head and cutting herself with a razor blade. I was terrified, and totally freaked out. I had never witnessed anything like that before.

Alan Lewis - PhotopressBelfast.co.uk 29-6-2022

The old Victorian ward was awful - it was run down and painted in a horrible grey colour. It was more like a prison than a hospital ward with bars on all the windows and staff watching us patients from a secure room. All I heard was doors banging loudly and large bunches of keys being jangled. I knew I was locked up, going nowhere and I had no idea if or when I would ever get out.

To say the experience was traumatic is an understatement, definitely not the proper place for an unwell Mum to be who had recently given birth. General psychiatric facilities are totally inappropriate for women with postpartum psychosis as they require specialist diagnosis and treatment; plus their basic needs to be with or even see their babies are not provided for.

I wasn’t given a diagnosis of postpartum psychosis back then only of manic depression (bipolar disorder), so more information would have been helpful for me to try and make sense of what had happened. It was during my recovery and finding APP online that I first heard of postpartum psychosis and its connection to bipolar.

Northern Ireland and the whole of Ireland still have no perinatal wards or MBUs (Mother and Baby Units) which is outrageous in 2022 when so many women suffer postpartum psychosis.

I firmly believe if I could have been treated in an MBU it would have been life-changing for me; speeding up my recovery as I could have been with my baby boy instead of constantly fretting for him. It was heart breaking to be separated from Joshua when all I wanted to do was love and nurture him. I was denied the opportunity to both care for my baby in those early weeks and have the chance to further develop the crucial mother & baby bond – something I still feel very guilty about 14 years on.

 

 

Alison Cobb - author of A Secret Never to be Told

Personal Experiences

As Alison Cobb’s new book, A Secret Never to be Told is published, the author talks to APP about how the stigma surrounding mental illness almost prevented her from meeting her own mother.

My father was out for the evening and the house was empty. I was 13.  I was wondering what to do and so I went into my father’s secretary’s office - she had a typewriter that I loved to play with. The secretary wasn’t there, but I stumbled across two files on my father’s desk that intrigued me. One of the files had my grandmother’s name on the front (Mrs. E. Brittain), the other my mother’s name – Mrs. D. Brittain.

That was pretty much all I knew about my mother – her name - and that she had died. I began looking through the file and found lots of very dull papers and hospital bills for 25 guineas each. I realised she must have been very ill before she died to have been in hospital. But when I got to the end of the papers, I found that the latest bill was just a fortnight old. My mother must have still been alive!

I kept reading through the files, coming onto my father’s medical description of what had happened to my mother. Although my father didn’t know much psychiatry, he was an orthopaedic surgeon which is possibly why these notes read just like a doctor’s notes would.

I learnt that I was born 10 months after my father and mother married – probably conceived on their honeymoon. However, after my birth, my mother was overly excited, terribly suspicious, fearful of everything and unable to sleep. Eventually, my mother was placed in a psychiatric hospital and put under 24 hour surveillance because she was threatening to kill herself and crying constantly. She was incredibly distressed.

Alison’s mother Dorothy when she was pregnant, with her father, Tommy, at the Norfolk Broads.

As I’ve since discovered, my mother had a good pregnancy and was happy and healthy right up until my birth. She was doing all the things expectant mothers back then did – embroidering things, knitting a shawl for me. She was a very happy woman who was looking forward to becoming a mother. And then it all went very suddenly wrong and she was separated from us and sent to a psychiatric hospital.

As it turned out, my mother was diagnosed with ‘milk fever’, or puerperal psychosis – which is now known as postpartum psychosis. My father’s psychiatric colleagues told him that this condition could run in the family so he raised it with my mother’s parents which didn’t go down very well. They responded by denying any prior history of mental illness and by saying ‘Oh, so you think we sold you a pup do you!’

The stigma was huge, but it manifested in tiny moments. I remember one of my cousins saying ‘I know something about your mother that you don’t’ but she wouldn’t tell me what.  It was all kept a big secret and my father later apologised to me for not telling me sooner.

However, even after I learnt about what had happened, my father didn’t like to talk about it and I was never able to visit my mother. But he suffered enormously keeping the secret, not being able to move on with his life, and all the while caring for somebody who, he was told, would never be well enough to leave hospital. The stress became too much. He took his own life when he was just 50 years old.

After I lost my father it took a long time for me to find out which hospital my mother was in. I would ask my aunts and they’d say not to go, that it would only upset her. In fact, my father was himself told by the hospital staff to stop visiting her for the same reason. So she was left alone in hospital and institutionalised for decades.

Of course, when I had my first child I was in absolute terror, staying awake all night watching her and wondering how long I had before it happened to me. Thankfully I stayed well throughout all my pregnancies and beyond.

Eventually I tracked my mother down after sending handwritten postcards to all the psychiatric hospitals in Suffolk. Finally I received a response and, after initially refusing to see me, my mother agreed. I was in my late 20s at this point and already had two of my three children.

My first husband was very supportive, as is my husband now, and he drove me to the hospital where we entered a huge ward with 60 beds in it, all painted silver, with no curtains or carpet. Suddenly I heard a clicking across the floor and my very small mother, in very high heels, came over to us. She wore a lot of make up, her eyebrows were drawn on and her lips painted in a Cupid’s bow that had been fashionable in the thirties. But she didn’t seem in any way ‘mad’.

The first thing she said to me was ‘You must be Alison. You’re terribly late.’ She said it was a terrible place for us to meet and asked if we could take her somewhere for lunch, which the hospital agreed to.

Alison’s mother, Dorothy

I had my two young children with us and she peered at the youngest and said how she looked just like my father. She hadn’t seen him in 30 years but that was the first thing she saw.

When we got into the hotel and sat down there was some butter in front of us. My mother asked if it was butter or marge. Told by us that it was butter, she ate it all with a knife and fork saying ‘we only get marge in the bin’.  And I thought, that’s a perfectly sane thing to say or do in the circumstance.

She wasn’t crazy, she was institutionalised.

But of course she had no recourse, because nobody believes you when you’re classed as ‘mad’. However, after my father died and we could no longer afford the cost of the private hospital, my mother was moved to an NHS hospital. It was here that she did much better, reconnected with her sisters who would visit her, and was eventually discharged. It’s comforting to know that my mother had eight happy years working as a live-in house help and living independently before she died.

I thank the heavens that today there are much more useful, helpful drugs and better services. But postpartum psychosis is still a very serious illness that needs to be diagnosed very quickly, because of the potential danger to the mother or her baby, which is why we need more awareness. The symptoms may be amongst the worst of the childbirth-related psychiatric disorders, but the illness has a very good prognosis and most women can go on to make a full recovery.

Hopefully today, more women are able to stay with their babies while they recover and not become separated, like my mother and I were all those years ago, with such damaging consequences for her, for my father and for me.

If you’d like to read Alison’s full story, you can buy a copy of her book, A Secret Never to Be Told, here

 

 

 

 

 

 

 

 

Ailania’s story - I was diagnosed early and treated in an MBU – others are not so lucky

Personal Experiences,

I’d had some experience of mild depression in my late teens and early 20s, but nothing could have prepared me for becoming seriously unwell with postpartum psychosis.

Being pregnant for the first time, my husband and I were like fish out of water. However, it was a really straightforward pregnancy for the most part, and I felt in a good place mentally. We went along to antenatal classes – where there was a brief mention of postnatal depression – but I didn’t really consider it could be an issue for me as I felt really well.

However, towards the end of my pregnancy I became more anxious. I was overdue and I felt disappointed in myself because of that. Eventually, I went into labour naturally but had to have a forceps delivery because my contractions were inconsistent.

I was in so much pain and so exhausted when my little boy was born, I felt like I was in a state of numbness. I just felt so relieved that the birth was over.

After a little time in hospital, I started to feel really confused. I was given charts to fill in about feeding times and I just couldn’t get my head around them, which I found really distressing. I put it down to just being really tired.

We were discharged and I went home with my husband and new baby, and things seemed OK for the first couple of days. But then everything went downhill really quickly, and my husband suggested we go back to the hospital to speak to someone.

From my point of view, everything was really confusing at that point. I hadn’t slept for about five days straight, and my thoughts were just running wild – but there was no cohesiveness to them. I had this overwhelming sense that something terrible was going to happen, and I kept thinking that I might die, so I was in a state of constant panic. I also started to exhibit some quite unusual behaviour at that time, for example, I was dressing in winter clothes even though it was springtime, and I was obsessively cleaning the house.

That’s when my husband noticed that things weren’t right and phoned the hospital.

He shared his concerns and was advised to bring me straight back to the maternity ward.

By this point I had become obsessed with colours and the need for things to be colour co-ordinated in order for everything to be OK. I remember a nurse carrying a mug that was the same colour as her coat and I remember telling her that it made me feel better because the colours matched. I had this awful fear of something bad happening and I felt I had to prevent that by surrounding myself with matching colours.

I also started believing that I might have died, or that my baby might have died, and that the other parents in the hospital were actors and their babies fake. It felt as though we were in a film set or something, but I also remember thinking the TV set was sending messages to me and I was having auditory and visual hallucinations by then as well, and often not being able to recognise my own baby.

I was seen by a psychiatrist really quickly and she diagnosed me straight away with postpartum psychosis, explaining everything to my husband and mother in law and referring me to the nearest Mother and Baby Unit (MBU).

I was so lucky to be sent almost immediately to the MBU, which was only about 25 miles from our home in Edinburgh.

I’m from Belfast, and there is currently no MBU in the whole of Northern Ireland, so I knew that other mums in my situation wouldn’t have been so lucky.

My symptoms started to decrease during my time on the MBU, where I spent around seven weeks altogether. Initially I was under 24 hour observation, but then, as I started to get better, I was able to start building back my confidence and gaining my independence again.

After being discharged, I was still under the care of the MBU, and was regularly visited by an occupational therapist and a community psychiatric nurse – the same one I had met on the MBU.

Sadly, when my son was around seven months old, I became unwell again – but this time with depression. The first time I was admitted to the MBU it was on a section but this time I volunteered my admission, because I knew I needed help to get well and bond with my baby – and I knew that the MBU was the best place for me.

Getting a bed on an MBU twice meant that I was doubly lucky and it meant I was able to recover quickly and strengthen my bond with my baby. With the help of the staff at the Unit, I began growing in confidence as a mum and my love for my son really grew.

It was only during my recovery that my diagnosis was properly explained to me. At the time of my illness, I wasn’t able to process anything at all. But I remember feeling really upset because I’d never heard of PP and I felt really alone in it.

As I started to do my own research on what this illness was, I stumbled across APP and realised that I wasn’t alone at all – all these other mums had been through what I had. It made everything a lot easier to process.

Since my illness I’ve had a diagnosis of anxiety and PTSD, so I’ve just finished cognitive behavioural therapy for that, which has really helped.

Now I want to raise awareness of PP so that other families feel less alone, because it’s such a traumatic experience to go through. However, I do feel lucky that I got the diagnosis - and therefore the specialist care I so badly needed - really quickly.

Women need MBUs because they work. It’s frightening to think that some places, like my home of Northern Ireland, still don’t have them.

Anneka’s story - The mother and baby unit was incredible, I owe my life to them

Personal Experiences, ,

In March 2021 I gave birth to a perfect little boy called Ralph and my family was complete.

I had a very easy pregnancy and loved every minute of it, I couldn’t wait to be a Mum.  After a short stay in hospital because Ralph had an infection, it was time to come home. Looking back I wasn’t right from the moment I got home but we just thought it was an extended set of the ‘baby blues’ - as did the midwife who came to see me.

Shortly after being home I was terrified someone was going to take my baby from me, that the house had to be tidy and if it wasn’t something really bad was going to happen.
I couldn’t remember anything and had to carry a notepad with me at all times to write down everything I had to do or had already done, from Ralph’s feeds to nappy changes.

The final straw for my husband and family to intervene was when I started to open presents and cards and couldn’t remember who anybody was.

My husband, Laurence, decided I needed medical attention ASAP but there was no chance I was going back into hospital and leaving Ralph. He told me I had a water infection and just needed to go in for some antibiotics so I agreed. Getting me into the hospital was very difficult as, by this time, I couldn’t remember anything about Covid and didn’t understand why I needed to wear a mask. I was taken straight to A&E where I was asked a series of questions which I couldn’t answer, including which day it was and who the prime minister was. By this point I had started to hallucinate and thought that every doctor was against me. The police were nearby with another patient and seeing them made me think that they were going to section me.

I ended up staying in hospital for a few days having all sorts of tests to rule out anything medically wrong with me before the psychiatric team would get involved. By this point my husband had found out about postpartum psychosis and that the best place for me would be a mother and baby unit.

By now I was very unwell and believed that I, and the midwife looking after me, had been arrested for committing a terrorist attack on the hospital. Every nurse or doctor that came to see me I thought was a member of my family or friends. Laurence was bringing in Ralph everyday so we could continue to bond, but by this point I thought Ralph had died so this became quite stressful. I believed my room was under surveillance and armed police were outside my room. When my Mum came to see me I thought our meeting was being broadcast on national TV. It all seemed so real.

The day before my 30th birthday I was transferred by ambulance to a mother and baby unit.

The first few days in the mother and baby unit I didn’t speak, I spent my 30th birthday mainly in my room believing I was still under arrest and my room was a prison cell. By this point the radio had started speaking to me and I couldn’t watch the TV because I believed that it was still covering the terrorist attack I’d committed. The staff were incredibly patient and understanding.

I was extremely lucky to get a place at a mother and baby unit close to home and my husband visited us every day. I remember so clearly asking him when we first arrived “How long will I be here?” to which he replied “it normally takes 6-8 weeks for people to recover.”
3 months, a relapse and being put under section later we finally returned home.

The mother and baby unit was incredible, I owe my life to them.

Without them who knows what would have happened. Every member of staff helped myself and Ralph bond through my recovery and supported my whole family. I also made some friends for life in the other mums that I speak to most days now. We were thrown together and have all been through such an experience together, I will be forever grateful for them.

I remain on medication for my diagnoses and am currently being supported by the wonderful Perinatal Mental Health team and the Early Intervention for Psychosis team who I see every other week.

Postpartum psychosis is scary and can affect anyone, including me who had no mental health problems in the past. My advice for anyone experiencing it now is, you will get better, take the support and treatment given to you. It’s helped me to put life into perspective and know what’s important. I’m not angry it happened to me, it’s part of who I am and now I want to give back to all the people who helped me recover.

 

 

 

Jade’s story - Awareness is so important

Personal Experiences, Uncategorized

I finished work for my maternity leave in February 2020, just before the lockdown. My pregnancy had been smooth but the last few weeks were awful. He was ten days late and I was just so ready for him to come out. I wasn’t sleeping, I had a 72 hour labour, and I had to switch from having a water birth to going into a labour unit because I got to around 4 or 5cm and nothing was happening. Eventually, I went into hospital and had an epidural and forceps delivery.

When my baby was born he was immediately taken away. During the delivery his heart rate had dropped so he had to be put on an incubator in the neonatal unit two floors up.

During this time I started to feel like there was something wrong with me. I wasn’t sleeping well and something just didn’t feel right so I told the nurses. They reassured me that it was probably all normal, I’d been through a traumatic birth, etc. But the sleep wouldn’t come, and I started thinking strange things and not wanting to be around my family (other than my husband) which wasn’t like me at all. I was just pacing around the hospital day and night feeling anxious.

I became really distressed and starting thinking that if I fell asleep I would die. That’s when things really hit me.

I began seeing and hearing things, with imagery of heaven and hell and other religious visions playing a big part in it. I also thought that my own body was trying to kill itself which was terrifying. Plus, I kept thinking that I could hear my baby crying which was really upsetting. But I couldn’t have heard him because he was so far away.

My husband was really worried about me and kept speaking to the nurses and doctors, but the problem was that I sometimes appeared well and lucid when they checked on me. I finally agreed for my mum to come in and see me and that’s when I told her about my fear of dying if I fell asleep.

The hospital then moved me into my own private room because I was in so much distress, which I think they thought might help the other mums around me as well. They allowed my mum to stay over night with me too and, meanwhile, my husband was still urging them to get me some more help, because he knew there was something seriously wrong.

The hospital, however, suggested that I had the baby blues and at one point even suggested I was ready to go home! So my husband did his own research and found out about postpartum psychosis. He recognised the symptoms in me straight away.

He’d read about Mother and Baby Units (MBUs) and reached out to the one in Chorley not too far away. I was so lucky that they sent somebody to see me because, just prior to this, the hospital were considering sending me to a general psychiatric ward, which would have meant being separated from my baby.

I was transferred to Chorley MBU eight days after giving birth and I am so grateful that I got a bed there.

In those first few days I was really anxious. I didn’t know what was happening to me and I’d been googling things like schizophrenia, personality disorders and bipolar. I also remember googling ‘will I die if I have a mental breakdown.’ It wasn’t until I was settled in the MBU that I first read about postpartum psychosis in one of the leaflets they gave me, which also talked about how treatable it was. It was such a relief to know what it was that was happening to me, and to know that I could recover from it. Plus, I knew at that point that I was absolutely in the best place.

I was given anti-psychotic medication and the hallucinations stopped and I started sleeping again. But, after a while, I started to feel really unhappy and detached from my baby. I felt kind of dissociated from him and from being a mother. I wasn’t actively suicidal, but I felt like I didn’t want to live. That’s when the psychiatrist started discussing postnatal depression with me, and I was prescribed with additional medication.

Prior to this I hadn’t experienced any mental health problems at all. In fact, neither had my husband, so we were both really unprepared for it.

I kept telling the MBU nurses that I might be the only one who doesn’t recover from it all, because I really couldn’t see a light at the end of the tunnel, but they kept reassuring me. They told me to distract myself, to focus on my baby, and told me that it does take time to heal.

I also met Jocelyn, APP’s peer support worker, on the ward, as well as other mums who had experienced PP and recovered and that really helped me. To know that there are other mums out there who have gone through these same experiences really makes a difference.

Finally, by the back end of April, I started showing signs of getting better and they started talking to me about going home - just for a couple of hours at first. By this point I was very detached from the outside world so it was really daunting but I did go home for a little bit which felt strange.

I was finally discharged fully on the 21st May 2020. I wasn’t fully recovered, but I’d say there was around an 80% improvement by that point. I was still on meds, still getting support visits to the house however, even though the country was in lockdown at the time, I tried to get back to some sort of normality.

It took a while to get back to feeling like me again and it really affected my marriage. My husband had struggled with the trauma of it all as well. However, eventually, by November 2021 I came off all the medication and started to feel like myself again, which strengthened our bond as a family.

Looking back, I think for us, not having any idea what was happening was the most frightening thing. We didn’t know about PP, mental health was barely covered in the antenatal classes, other than a brief mention of depression, and the midwives didn’t seem to know too much about what was happening to me either. It wasn’t until I got to the MBU and met with specialist workers and peer supporters that things started to look up. I feel so grateful to have got a place at Chorley – I know not everyone is so lucky.

It’s now 2022 and I’m in a really good place. I’ve developed such a great bond with my boy, and he’s such a happy little boy too. So I get that excitement, that joy, that feeling of love now, as a mother, which is so incredible. I’m also back at work, taking care of myself, going to the gym and, importantly, my marriage is stronger than ever.

Now I can reflect on my experience I really want to help others by sharing my story. Awareness is so important, I think it would have helped us enormously if we had been armed with more knowledge from the start. Just being able to spot the signs, to know what help is out there and to know that you can recover would have relieved so much of the distress that I felt.

POETRY: In to the Deep By Susan

Personal Experiences

Susan experienced postpartum psychosis in 2006. Here she shares her poem, 16 years on.

In to the Deep

From a rush with euphoria
Feeling on top of the world
To the sensation of exhaustion
Fear of falling to the ground.

The shower in the morning
Helped to make me aware
To feed, bath and love my baby
With much loving care.

The following weeks I carried on
Getting dressed everyday
It makes you feel better
Or so they say

I continued to do everything
As I thought I should
Hanging out the washing
Feeling reenergised
Thinking I was doing good.

No groups to join,
few visits from friends
Only when my midwife visited
She noticed I was drained.

I was starting to spiral
in to the deep.
I was running on empty
Suddenly unable to sleep.

I thought I could accomplish
Anything when I became Mum,
Within a couple of months
I began to feel numb.

Forget previous feelings,
Natural instincts I had,
Could not remember anything
Feeling I was going mad.

This itself was frightening
Not knowing who I was anymore
If I would get back to where I was
And who I was before.

Lack of sleep and eats
Plummeted me into despair
Catatonic some days
Not knowing if I was there

Being told I was getting better
Feeling like shouting out I am getting worse
But could not get the words out
I am here, I am not right, am I cursed?

Lack of understanding from all of those around
Caused more distress and isolation
As I felt this was my life
And I was not to be found

Fearing institutions and staff
throwing away the key
Thinking everyone else
would be better off without me.

Soon I did discover
That help was there for me.
Experts in their fields providing
Care for baby and thee.

As treatment started to work
And I started recovery,
Looking after myself first,
Allows me to look after my family.

Look after yourself, be good and kind.
Having an insight helps to maintain a healthy mind.

Zebunisa’s story: As a psychology graduate I had lots of technical knowledge about mental health – but I still couldn’t see how bad my illness really was…

Personal Experiences,

Having a baby is a significant, wonderful and stressful time of life. But when giving birth coincides with family weddings and various other things that life throws at you, that stress can be amplified tenfold. In the days after I gave birth, I remember feeling vulnerable, exhausted and highly emotional.

So far so normal.

However, by day five things for me and my family were definitely not normal.

I became quite elated but I was also really confused and, I’m told, acting in quite a bizarre way. Running naked around the room was certainly not normal for me, and neither was telling anyone and everyone my personal problems. I was so sleep deprived and was struggling with breastfeeding big time. I sought out breastfeeding support on several occasions and after seeing the breastfeeding support team and speaking with them as if they were my counsellors, they suggested I see the crisis team. They could tell something simply wasn’t right.

However, for some time it was difficult for the people around me to see just how unwell I was. Because I have a masters in forensic psychology, I was regularly articulating all this knowledge and all these psychological terms and, seemingly, demonstrating insight into what was happening to me.

But in reality, I wasn’t just a bit switched on and alert, I was far too switched on. In fact, you could say I was behaving like a mad scientist!

By this point I had racing thoughts and I was hearing and seeing things that weren’t there. I was also talking at a hundred miles an hour, sending hundreds of messages to people and constantly writing and researching. These behaviours were symptoms that I recognised from my study, but, unfortunately, even though I recognised what was happening it didn’t instil in me just how unwell I was.

Conversely, I was elated. I felt as though I was solving some kind of puzzle and having my eyes opened to the experiences that others I had worked with had gone through.

From that point on things became blurry. My husband called the crisis team and I know that they assessed me over a period of five days and told me that I needed to go to a Mother and Baby Unit (MBU), but I refused to go.

Eid was fast approaching and I was determined to stay at home and host the family for the big day as we had planned. I kept telling everyone that I knew my rights, that I had insight and I was informed enough to make decisions but, even though I had all the technical knowledge, my illness stopped me from seeing just how poorly I had become.

Eventually, they managed to get me admitted to an MBU in Nottingham, so it wasn’t too far from home. When I arrived there I was both confused and elated – I’d worked in these kinds of environments and I became excitable. At one point I tried to deliver a PowerPoint presentation to the doctors (this did not happen but I tried!). I was constantly ‘researching’ but I wasn’t using books or Google – I was using my mind and my racing thoughts and writing everything down, every single day. Imagine writing all day long, that was me!

My moods were all over the place and it was as though everything about my personality was 10x what it normally was. I’m a clean person, but I became obsessed by cleanliness, at one point spending three hours straight in the shower. I also became really angry with my husband when he tried to decorate the room for Eid and I ripped everything back down again. I was constantly having tantrums but my husband kept visiting, he kept supporting me and just being there for me.

I didn’t trust anybody, so when they tried to give me medicine it was a real challenge. I would ask for all the relevant paperwork, requesting printouts and saying I needed to be kept fully informed.

After a while, I remember finding a leaflet in the MBU about postpartum psychosis and when I read up on it I began to recognise that it was what was happening to me. I had been told by health professionals that this was probably my diagnosis but until that point I refused to believe them.

Eventually I started trusting their care and taking the meds, which brought me back to my usual self.

Although I don’t remember all of this, the staff and family have since filled me in on some of the things that happened.

After about three months in the MBU, I left the MBU and received care at home from the perinatal mental health team and my family supporting me along the way. I started to think I was much better. However, after the psychotic symptoms died down, I was hit with depression and anxiety. All of these different mental health problems were affecting me. Before giving birth, I hadn’t experienced any mental health problems at all...

Now I want to help others. I personally found a lot of support and strength through APP’s network and I want to give something back and to let others know that you can recover from PP. You may not feel like you will whilst you are experiencing it but YOU WILL and YOU DO get better.