Category Archives: Personal Experiences

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

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

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

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

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…

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. So 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 believed I was there to deliver a PowerPoint presentation to the doctors! 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.

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 I continue to take to this day.

However, 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.

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 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 APPs network and I want to give something back and to let others know that you can recover from PP.

 

Ruth’s story: I was diagnosed with bipolar after my miscarriage

Many mothers fully recover from postpartum psychosis, but some face a long road to recovery. I am one of those mothers, and my journey has been long and hard. But today, my life as a mother is wonderful and fulfilling.

My story starts in the autumn of 2015 when I miscarried in the ninth week of pregnancy. The grief that followed my loss was engulfing. It consumed me. I found myself crying for over an hour at my work desk, at a Chinese takeaway and relentlessly at home. I was crying pretty much all the time.

Naturally, the loss of my baby left me shattered, but the depths of my despair went well beyond the pain of loss. I knew something was seriously wrong.

After several weeks of severe hopelessness I visited my GP. She stressed that the depression I was feeling was emotional rather than hormonal, and sent me away with a month’s supply of antidepressants. The tablets sadly had little effect, and my depression took a turn for the worse.

In December 2015, approximately 8 weeks after I miscarried, I became suicidal and floridly psychotic.  Convinced I had spread SARS across the UK, I believed I was on death row and facing execution by the electric chair.

Delusions of torture soon followed, along with hallucinations of flies flying around me. People’s faces would appear disfigured. Confused and clinically depressed, I was admitted to hospital for assessment, and would go on to spend three weeks as an informal patient on my local psychiatric ward.

This devastating experience had been my first episode of postpartum psychosis.

Despite making a full and speedy recovery, I went on to have two further psychotic episodes before the birth of my son in 2019.

One experience was so violent I had to be sectioned by the police. I was initially diagnosed with Acute and Transient Psychotic Disorder, and was advised by consultants that if I managed stress and sleep better I could prevent further episodes.

Managing stress and sleep was becoming easier, and in 2018 I found myself unexpectedly pregnant with my son. I was ecstatic. At 35, and with two failed pregnancies behind me my hopes of becoming a mother had been rapidly fading.

My son was my miracle baby. My rainbow baby. But my pregnancy was tough. Once again, I began bleeding heavily early on. Convinced I was going to lose another pregnancy I developed severe OCD. I would endlessly wash my hands, and avoided a wide range of foods – believing I would catch listeria. My anxiety peaked quickly and I becamepsychotic. Feeling very paranoid, delusions followed. I briefly believed sewage was leaking from the sink in my bathroom.

Concerned for my wellbeing, my Community Mental Health team linked me in with the newly established Perinatal team. I met with the Perinatal Consultant Psychiatrist early in February 2019 (2 months before my son was due). I was 31 weeks pregnant.

It was a devastating meeting. The consultant diagnosed me with Bipolar Type 1 disorder which she believed was triggered by the miscarriage in 2015. She went on to inform me that, as I had had a previous episode of postpartum psychosis, my chance of becoming acutely unwell after giving birth was 50%. I was urged to start antipsychotic medication immediately.

Because of my anxiety and previous failed pregnancies, I flatly refused, and hesitantly agreed to start medication immediately after my son was born. I went into labour a week later, and gave birth at 35 weeks. My son was tiny. Weighing only 5lb10oz…but he was healthy. And I had avoided a severe psychotic episode thanks to the amazing Perinatal and Maternity teams who had managed my labour like a military operation.

The perinatal team were concerned, however, that I was showing early signs of postpartum psychosis. I therefore spent a week on the labour ward and was admitted to the nearest MBU in the neighbouring county. I stayed at the MBU for three weeks.

Initially I was elated. I felt I had won the battle against postpartum psychosis, and I had a beautiful, healthy son. But later I struggled in the MBU, finding it a daunting experience. I was a new mother away from family and friends…and my hometown. It was not how I expected to spend the first weeks as a mother. But I found solace in the unit. I realised I was not alone, that other mothers had suffered like me, and that we had a huge support network to rely on.

As hard as it is to admit, I did struggle to bond with my son after birth. My traumatic pregnancy, combined with my shock diagnosis, had flawed me. I wondered how I would cope – if I could cope.

My elation at beating a full blown second postpartum episode was dashed last May. Psychosis had finally caught up with me. The anxiety of being a new mother, combined with fears relating to the Covid-19 outbreak tipped me over the edge. Fortunately, this time I was on medication. This meant the episode was less aggressive and slower to progress. It also meant I had a lot more insight – I knew I was unwell. I did not need to stay in hospital and was able to see my son (at my mum’s house) regularly. This was empowering for me as I realised I could now manage bipolar psychosis.

Happily, I am now in remission. The longest period of remission since 2015. I am aware however that medication does not eliminate the risk of relapse, and I accept I am on medication long-term.

Life has changed vastly for me since my miscarriage. I carefully manage my stress levels, and sleeping patterns. I no longer drink alcohol. My once fast-paced, chaotic life has almost ground to a halt. But in losing almost everything, I have found what is most important…health and motherhood.

For years I doubted my ability to move past my episode of postpartum psychosis. It had, at the time turned my life upside down. But I am often reminded of the Perinatal Consultant’s comforting words, “The illness”, she said, “will always be part of you, but doesn’t need to define you”. These words gave me hope, and Action on Postpartum Psychosis have connected me with mothers who have shown me that this is true.

I now see that it is possible to move on from postpartum psychosis. In fact, not only is it possible to move on from, but I now know that I can live a wonderfully fulfilling life. A life full of meaning and purpose. A life as a mother.

 

APP fundraiser story: How cycling boosts my mental wellbeing

Our Partner Peer Support Co-ordinator,  Simon O’Mara, has been incredibly busy raising awareness of postpartum psychosis and raising lots of money for APP by cycling 851 virtual miles.

Here he talks about why cycling is so good for his mental health.

When I get on my mountain bike, riding through narrow tracks at speed, tree branches within an inch of each handlebar, I can’t afford to think of anything else. It’s impossible, in fact. Mountain biking for me, requires technical focus, care and attention, and to let my mind wander elsewhere would be dangerous.

It’s the same with motorcycling, another passion of mine. It’s so good for the soul because when you’re out on the road, you can’t focus on anything else. You need to be acutely aware of the conditions of the road, the weather, other traffic – and of course every move you’re making; it’s critical to keep you safe.

But this need for focus is also why it’s so good for my mental health. The escapism and mindfulness that cycling affords me is invaluable. The fact that it’s good for my physical fitness is merely a by-product for me because, first and foremost, I enjoy it – and that’s why it has such a positive impact on my life and my health – both mentally and physically.

Fifteen years ago, after the birth of our son, my wife was diagnosed with postpartum psychosis (PP) – a severe and debilitating postnatal mental illness. It was a frightening time for the whole family not least because, at the time, we had no real understanding as to what PP was.

It all started in the first couple of weeks after my wife gave birth, I had noticed subtle changes in her mood, but, as a first-time father, I didn’t really know what was ‘usual’ or ‘unusual’ after birth. A few weeks later and these changes took a sudden and dramatic turn for the worse, things became very scary, very quickly.

Over the next few days, she woke in the early hours ‘ghost like’, her mood had plummeted, she was anxious, confused, pacing around the house, having delusions and hallucinations, ultimately it all ended in a 999 call.  I found myself in complete turmoil and throughout our journey with PP, had times where I went through every emotion possible - from being terrified, to feeling isolated, worried about the future and even feeling guilt-ridden for decisions I’d had to take; with little sleep, the pressure I felt was enormous, however, the support we received from family, friends and eventually specialist health professionals treating my wife was vital.

Postpartum psychosis as a father or partner, feels very much like a journey with a number of possible stages, from the initial crisis, potential admission to hospital, returning home and recovery - all of which bring different feelings and concerns to the fore. Just holding it together, having to keep strong for your wife or family members can sometimes see you not considering or letting on how worried you are, which in turn can lead to fathers suffering with their own mental ill-health.

It goes without saying that, whilst in the midst of the illness, mountain biking wasn’t really an option. I did give it a go while my wife was in hospital, but I couldn’t concentrate and was too acutely aware of everything that was going on at that time, so I wasn’t able to give cycling all my attention and I wasn’t able to get the enjoyment and mental health benefits from it.

When my wife came home, as her partner, I still had real worries about whether she might relapse and how we would cope if she did. I wondered if things might be drastically different for us and how life might be in the future. So it wasn’t until she was firmly into her recovery journey that I was able to stop and think about how I was coping, how I was feeling. It was during this period of my wife’s recovery that mountain biking became a significant part of my own recovery from the stress and trauma that PP had on our family.

But it isn’t even just the time that I’m on my bike when I notice a change in how I’m feeling. Even when I’m putting the bike back on the car, ready to head home, I feel refreshed, ready to deal with anything that life throws at me. It not only gives me those moments of mindfulness, it re-sets everything and helps build longer-term resilience.

This is why I was so keen to combine my learnings from our family’s experience with my love of cycling to raise awareness and funds, and to campaign for specialist services for postpartum psychosis. Since October, I’ve been cycling a virtual route of 851 miles to demonstrate the gaps in service provision around the UK and the miles many families have to travel to access this care.

 

I’m cycling on behalf of APP. If you’d like to sponsor me, visit my JustGiving page for more information.

POETRY: By Ruth Stacey

Ruth Stacey experienced postpartum psychosis in 2019 and spent time recovering at the Jasmine Lodge Mother and Baby Unit in Exeter. Here she shares two poems.


Is it weird when I'm ill?

Is it weird when I'm ill?

Do the family calls dry up like a lake desperate for water?

The dehydrated ground visible  - vulnerable

Or do the calls pile in, muddled and rushing like a river due to burst its banks?

Something must give eventually.

I have already 'given'

Entering my weird world of an altered reality, a fake truism, must disturb, peturb, frighten, confuse

The focus of our family pulled in - a black hole of queries and questions

Do we go along with her illness?

Do we challenge her new, temporary, fragile belief system?

No, you just tell her that she's right and everything will be alright:

Safe, safe, safe

Love, love, love

Desperate eyes, a heart beating so irratically that it doesn't know whether to feel excited or scared,

Whether to run or challenge or smile or laugh

Doing all perhaps, a simultaneous level of 'scare' to the time-shattered onlookers

No time for your own grief.

No time to shed your own harrowing tears

Not now although

It. Will. Come - I promise

Stick with me and my unpredictable beast-of-an-illness

Laugh when I'm crying and cuddle me like I was your baby again because this world is ultimate so new to me

I don't know what to do!

I don't know how to feel and I keep getting it so very wrong

Put your lives oh hold, onlookers - dry your precious tears and lend me your strength

Because I'll be back again

I just need your presence and love and hugs and reassurance to plug the terrible holes in my mental reality

My mental instability

I'll love you back forever

Is it weird when I'm ill?

Because, I'm so very sorry


MBU

MBU:
Distant yet near
Heart-renching, heart-healing
Confused-focus
Hair-pulling thanks
Deniable admission
Crazed sanity
Compelling kindness
Suffocating slowness
Halted healing
Psychosis revealing
Manic mothering
'Too tight' cuddling
Painted horizons
Hypermanic revelations
Doors closed, doors opened
Small world widened
Rosemary-scented serenity
Glass house hospital
So cared for yet utterly lonely
Feisty Independence
Utter dependence
Mouth fed, baby and me
Medication denial
Medication dependable
Sleep saviour
Clock-watching
Corner-cowering
Gritted teeth
forced smiles
Form filling
Mindfulness
Food hatred
Food lover
Baby carer - obsessor
Never neglector
Nightmare, daymare
Dream giver dream taker
Minutes rush
Days drag
Where even am I?
Where are you all?
Reflection redemption
Repeated affirmations
I can, I Will, I am...
MBU - how can what seemed a nightmare have been my saviour?
I felt like the unluckiest person alive,
Our baby doomed
A new reality of utter heartfelt appreciation, adoration
How time changes and heals
And a warmth glows fondly in the hole that was once was,
A year on reflection


 

Toni’s story: I know from experience that Mother and Baby Units are vital for recovery from PP

When I gave birth to my daughter in 2019 I experienced severe postnatal depression and ended up staying in a Mother and Baby Unit (MBU) for seven weeks. It was a long way from where we lived so I was grateful to be coming home with my baby girl when she was nine weeks old. I had a great couple of months and for a while everything seemed perfectly fine. Recovery was ongoing, but there didn’t seem to be anything out of the ordinary.

Looking back, however, I can now see what the signs were, but it was hard to recognise them at the time.

For some reason, completely out of the blue, I tried to take my own life. I have no idea why I did it, I don’t know whether it was an impulse or a window of opportunity (I did it when I was alone in the house). I ended up in hospital for 24 hours, saw the crisis team and was sent home.

Soon after, my thinking became really distorted. I kept saying to my husband that perhaps I actually died when I tried to take my life. On reflection, I now believe this was the onset of postpartum psychosis (PP).

There are snapshots of things I remember, like not believing that colours were real. I was questioning the colour of everything – suggesting to my husband that we were seeing different things when we looked at a brown lampshade, for example. I also started believing that my baby daughter had been swapped and the baby I had at home wasn’t mine. And I remember seeing a nursery nurse walk into my neighbour’s house and thinking she was coming to take my baby away.

Strange fears and beliefs from when I was a child started to re-emerge as well. I remember telling my dad that he needed to lock the door before ‘Hammer Man’ came to get me (Hammer Man was a name we made up for someone we were scared of as kids – as you do when your imagination runs wild).

I still didn’t realise that there was anything wrong with me. However, I went to bed one night, feeling perfectly calm, woke up at 5.30am and got myself ready for a night out! I was doing my hair, makeup, putting evening clothes on and I was really high and full of energy.

Because my daughter was about six months old by this point, we weren’t really alert to the risk of any new potential mental health problems as so much time had passed. My husband thought I was unusually quite happy, but he put it down to exhaustion. Plus, he had to take our son to school that day so I was home alone with our baby girl.

I remember feeling really happy, singing and dancing around the house with a photo of my son in one hand and one of my daughter in the other. I couldn’t see that this wasn’t normal behaviour for me at the time.

Luckily, I had an appointment with the perinatal mental health team that day. A nurse came out to see me and she immediately spotted the signs that all was not well. I remember she told me that she had to nip to Morrison’s and she asked me if I wanted anything. Obviously, looking back, I can see that she was going to make some calls and arrange to get me to hospital, but at the time I just went along with it, thinking it was normal to nip out to a supermarket half way through a mental health appointment.

The nurse returned shortly afterwards with the dummies I had asked for, as well as some chocolate for me. She stayed with me and explained that I needed to go to Ward F at our local psychiatric hospital for an assessment.

Strangely, and probably because I was so high, I was over the moon about going to hospital. It didn’t register that it was because I was unwell, and I just felt excited about being able to talk to everyone there.

About a week after I was admitted my mood changed dramatically from being really elated and happy to feeling empty. Unfortunately, after thinking they’d be able to get me a bed back on the MBU I was in a few months earlier when I had PND, they weren’t able to secure me a place. We didn’t have an MBU in Wales which is why I was so far away from home the first time I was hospitalised, but now I couldn’t even get in there. I felt a strong sense of rejection, loss and emptiness at that point. My mania had dropped and depression was hitting me again.

After about four weeks I was thankfully able to go home full time under the care of my perinatal mental health team, who continued to support me throughout.

Hospital environments are very different to being in an MBU, and I really didn’t want my children visiting me on the ward. MBU’s have more of a homely, comforting environment, and the facilities are geared up for mums with young babies and visiting families. Hospitals, on the other hand, can feel much more clinical and hectic, with lots of people coming and going – different patients, doctors, nurses and visitors.

This is why I ploughed so much energy into the campaign to get an MBU in Wales, which we now thankfully have at Tonna Hospital in Swansea. It’s called Uned Gobaith – which means Unit of Hope. Whilst the one in Derby that I went to with depression before PP hit was comfortable, it was almost 300 miles from home. I will never forget the three-hour journey there on the minibus. It was dark, and I remember my husband waving me off - I was so anxious and upset to leave him there. It still upsets me now when I think about that night.

But being so far from home also made it really difficult for my husband to visit and, given the fact he was looking after our son, as well as working full time, I only saw him about once a fortnight.

Having your baby with you, regular visitors, toys for your children to play with and your own private room to bond with your child, combined with the specialist facilities that new mums and their babies need, makes a huge difference for those of us who experience PP. It can actually help us to recover more quickly from the devastating symptoms.

Seeing the new MBU open, and seeing the brilliant surroundings and facilities will hopefully mean that other new mums in my position will have a faster and more comfortable recovery from this awful illness. It’s a real step forward.

 

 

 

 

Alexandra’s story: A doctor said I was probably suffering from the ‘baby blues’

Sometimes, the worst things in life are the things you don’t expect. For me, unexpectedly suffering from postpartum psychosis and severe depression, and spending almost a whole year in a psychiatric mother and baby unit felt like the worst thing that could ever happen to me. However, in many ways, it has also been the best thing…

After getting married to my dream man, James, I was desperate to have a baby. Sadly, the first time I fell pregnant I had an ectopic pregnancy, which led to me losing one fallopian tube and having a severely damaged left ovary. Thankfully, just a few months later, this trauma was all but forgotten, as I found out I was pregnant with my little girl.

My pregnancy certainly wasn’t a breeze, however. I had problems with my back and hips, and now, looking back, I definitely suffered from antenatal depression and anxiety. I would visit a therapist and wonder why I didn’t have ‘the glow’ or why I felt angry and upset - nobody told me that being pregnant can bring on all sorts of mental health issues. The doctors would speak about gestational diabetes and placenta previa amongst other things, but they never mentioned depression to me. Because of this, I looked forward to my pregnancy being over and welcoming my baby girl into the world – thinking that, then, everything would be fine.

But it wasn’t fine.

When my daughter Elena, now five, came into the world, I became seriously unwell and was unable to bond with her.

Shortly after her birth, I began seeing things and hearing things that weren’t really there.

I would go into the bathroom and see blood pouring out of the tap. Then, as I would return to my bed, I would see thousands of cockroaches crawling out from beneath my bed. Spiders seemed to surround me and climbed up my walls. My world became very dark. Funnily enough, I didn’t really do anything about it. I spoke to a doctor friend, who said I was probably suffering from the ‘baby blues’. Baby blues my backside!

Twelve weeks into being a mum and things were still incredibly difficult. I remember it was 8th May 2016, a few days before my birthday. I am also sure it was a Sunday, because we went for Sunday lunch with my parents. It was a really normal day. We came home and I put Elena to bed. The next part of what happened is hazy. I came into our living room and removed my watch. I used the metal strap to scratch my arm. I remember my husband being horrified. James began asking what I was doing and things really escalated. Apparently I started throwing wine bottles around our living room, pulling anything and everything out of the drawers. Understandably, James was concerned and called my mother to come and help. When she came I began screaming at her calling her a whore. Please note that this is something I would never, ever do! Before I knew it, James was restraining me and there were police and paramedics surrounding me. I was taken to the Edinburgh Royal Psychiatric Hospital for assessment, where I was told that if I refused hospital treatment, I would be sectioned under the mental health act.

So, at 3 o’clock in the morning of the 9th May 2016, James drove myself and Elena to St John’s Mother and Baby Unit in Livingston. It was a locked unit for mothers with perinatal mental health disorders. I was diagnosed with postpartum psychosis and told that Elena and I would need to stay there together for a couple of weeks.

A couple of weeks turned into half a year. I believed that I needed to drown Elena and, as a result, I was not allowed to be alone with her. I had to have two people with me at all times. My door was never allowed to be closed and I tried to take my life several times. All very, very dramatic. Following my psychotic episode I went into a deep depression and required multiple sessions of electro convulsive therapy (ECT) to help bring me out of it. I was so depressed that I wouldn’t speak, and my family described me as having very dark eyes and just staring at a wall all day. I was catatonic.

With medication and incredible staff at the MBU, along with my gorgeous husband and super supportive family, I started getting better. Initially, I was too unwell for talking therapy, but slowly, I began to see a psychologist and learn about coping mechanisms such as ‘Decider Skills’ and my world opened up to mindfulness practice and meditation. After half a year, I finally came out of the hell that I was in. Unfortunately, after my second child, I became ill again but it wasn’t psychosis this time. I wouldn’t be where I am today without the incredible staff at St Johns and community support workers. And I don’t believe I’d be here at all if it wasn’t for my husband and loving family. Unfortunately, I only found out about APP and the peer support network after my illness, but I wish I had known about their support back then, because what they do is incredible.

Since my illness I have learnt so much about my wellbeing. Every woman’s experience is different, but for me, wellbeing is not just about health and fitness, something which I believed to be true in my twenties. Wellbeing is so much more; it’s life satisfaction, job satisfaction, having meaningful relationships, taking time for yourself to heal and reflect, having a sense of purpose and a sense of meaning. Whilst, as new mothers, we often hear about how amazing it is to be pregnant and how beautiful it is being a mother, we do not all feel this way all of the time. Unfortunately, not all women have a good start to motherhood – whether that’s because of depression or postpartum psychosis or any other reason. But one thing I really want women going through similar experiences to me to know is that it is TEMPORARY and there is support out there. As a woman, I feel that women supporting women is truly important - especially, when it comes to childbirth and parenting – which is why peer support is key.

My experience of postpartum psychosis literally nearly killed me. But to return to my first paragraph, it has also brought me so many good things too: I live a fuller, more whole and content life. I am resilient and stronger than anyone I know - that might sound cocky, but after everything I’ve been through, it’s true!

I am able to get through literally anything and I am no longer afraid.

One of the most important lessons I learnt is that you either get bitter or you get better. It’s that simple. You either take what has been dealt to you and you let yourself grow and become a better person, or you choose to let it tear you down. We cannot choose whether or not we experience postpartum psychosis, but we CAN choose how to get better with it. The choice doesn’t belong to fate; it belongs to you.

You are not alone. There are people out there. They are called APP. They can help you choose.