Ruth's poetry about PP: Is it weird when I'm ill?

 

Ruth Stacey experienced postpartum psychosis in 2019 and spent time recovering at a Mother and Baby Unit. 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. MBUs 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.

 

APP 2021 Survey

 

We are launching APPs biggest ever survey about the care women receive for postpartum psychosis. We’d like to reach at least 500 women who have experienced PP.

The survey will help us to understand how differences in the types of care women receive for postpartum psychosis impacts on their experiences and recovery outcomes. The findings will help with our campaigning over the next 10 years.

The survey coincides with APP’s 10 year anniversary. Since gaining charity status in 2011, we have caused a sea-change in awareness of PP, services, and support. This survey will also help us understand the way that care has changed in the ten years since our last survey.

The survey takes about 20-30 minutes to fill in and asks about your care for PP. If you have completed it by post in the past 2 weeks - or if you have been a member of APP for a long time and completed the survey 10 years ago - you do not need to complete it again.
You can find more information and take the survey here: https://bit.ly/APPSURVEY2021

If you haven’t had PP personally, you can still help us by sharing the link with anyone who has. You can read more information about our biggest ever survey here:  https://bit.ly/APPINFO

We’d like to say a huge thank you in advance for taking the time to complete this survey.

Click here to take the survey

Dellasposa Gallery silent art auction in support of APP

Dellasposa Gallery held a silent art auction in support of Action on Postpartum Psychosis on Thursday 4th November, in memory of Alice Gibson-Watt (née Montagu-Douglas-Scott), who passed away in 2012 due to complications resulting from postpartum psychosis. Alice is the cousin of Julian Phillimore, the Founder and Director of Dellasposa.

The silent auction was hosted by BBC Antiques Roadshow's Jonty Hearnden, with a brilliant selection of artworks by Pablo Picasso, Salvador Dali, Sir Peter Blake, Michael Craig Martin, Ben Eine, David Shrigley, Sara Pope, Quentin Blake, among many others.

To view the auction catalogue follow the link here.

We would like to say a huge thank you Dellasposa for supporting APP.

 

Dr Jessica Heron, Chief Executive of APP, says 'We have been so grateful for the support that Alice's friends, family, colleagues at Sotheby's and the Antiques Roadshow have given us over the past 10 years. Their support has made an enormous difference to the growth and reach of our charity, and meant that we have been able to provide life-saving support to women and families, train health professionals throughout the UK, and campaign for appropriate services for those who suffer postpartum psychosis. We are delighted that Jonty Hearnden will be the celebrity Auctioneer and for the impressive pieces being sold to support our charity.'

For further information on the silent auction and related exhibition, you can write to info@dellasposa.com

Spring bulb planting

 

 

 

 

 

 

 

This year the Royal Horticultural Society joined forces with BBC’s The One Show to bring the ‘Garden of Hope’ to the world-famous Chelsea Flower Show (21st to 26th September 2021). The garden is now being donated to the Mother and Baby Unit (MBU) Rosewood (part of Kent and Medway NHS Social Care Partnership Trust). The beautiful blooms will help create a sanctuary and place of hope for the mothers and babies there. There are more details about the project in this article

To tie in with this lovely idea, APP volunteer Gemma Vinter (pictured above, left) has been sourcing donations of bulbs to give to the UK’s 22 MBUs to help brighten up their grounds.  

Gemma teamed up with staff at Stafford’s MBU to plant 240 spring bulbs, kindly donated by J.Parker’s Dutch Bulbs in the ward’s garden. She visited the Brockington Unit at St George’s Hospital in Stafford in September, and was joined by Laura Fox (pictured above, right) from the MBU as well as other members of the team. 

Gemma says she hopes that spending time outside with lots of lovely plants and flowers will encourage a little bit of “me time” to help patients’ recovery, alongside the invaluable help and treatment that MBUs provide.

Laura and some of her colleagues from Brockington MBU climbed Snowdon on 2nd October to raise money for APP.  You can find out more and still donate to their challenge here

APP would like to thank Gemma and all the staff at Brockington MBU for their hard work and support.

 

Steve runs the Yorkshire Marathon for APP

Steve Bushell ran the Yorkshire Marathon on Sunday 17th October 2021 to raise awareness and money to support APP’s work. Steve is the husband of Jo Bushell, who has also held several fundraisers for APP.

Steve said: “Shortly after the birth of our first child, my wife suffered an episode of postpartum psychosis (PP).

It hit us a few days into parenthood, following a week of zero sleep. The most terrifying thing that night when we called an ambulance was the realisation that in addition to me and our family not understanding what was happening, neither did any of the medical staff or paramedics on call that Sunday.

Jo was transferred to a Mother and Baby Unit the following day and received great care as part of her recovery.

APP provides support for women and families who have experienced PP and strives to raise awareness of the illness. They also create networks to connect those with lived experience and campaign for better services.

Steve’s fundraiser has raised more than £1,720. We would like to say a huge thank you to Steve for supporting APP and to all who have donated including Steve's employer M&G Prudential who have match funded £300.

You can still visit and donate to his fundraising page here.

If you have been inspired by Steve, we would love to support any fundraising ideas you have. Get in touch here.

 

Amy’s Oswestry 10k run for APP

Amy Coutts-Britton took part in the Oswestry 10k on Sunday 17th October 2021 to raise awareness and money to support APP’s work. Amy is a peer support volunteer with APP and has attended training events, meeting other mums like her who have experienced postpartum psychosis.

Amy said: “I have decided to reignite my running career 15 years post marathon.

I believe this APP is more important than ever during the pandemic as when you’re going through potentially one of the scariest things in your life it can help you feel less alone and be a fab informative and listening ear when so many baby groups etc have been limited.

APP trains peer supporters such as myself to provide forum based online support but also gives us the means to provide 1:1 support for people going through this traumatic experience, including their partners and wider families. APP also arranges café groups so we can meet up in person and feel less alienated.

It really is a shining light in the darkness that is postpartum psychosis.”

Amy’s fundraiser has raised more than £455. We would like to say a huge thank you to Amy for supporting APP and to all who have donated.

You can still visit and donate to her fundraising page here.

If you have been inspired by Amy, we would love to support any fundraising ideas you have. Get in touch here.

Our 'Fabulous Four' who ran this year's Royal Parks Half Marathon

For this year's Royal Parks Half Marathon which took place on Sunday 10th October, APP had four amazing runners: Sally Hogg, Nicola Ball, Jeni Dibley-Rouse and Anneka Harry.The Half Marathon was held in central London, and took in the capital’s world-famous landmarks on closed roads, and four of London’s eight Royal Parks – Hyde Park, The Green Park, St James’s Park and Kensington Gardens - in all their autumnal glory.

Sally has worked on improving services for women with perinatal mental health problems and is an admirer of APP’s work, particularly the central role played by women with lived experience. Sally completed a skydive with team APP in 2018, and ran a virtual half marathon in her local area for APP in October 2020 after the Royal Parks ‘live’ event was postponed due to Covid-19. She also ran in this year’s live event.

Sally says: "Two of my friends have had postpartum psychosis (PP), and through my work I’ve met many other women who have suffered from PP. APP is a fantastic charity which provides information and support to women and their families, trains health professionals and facilitates research. The charity has been instrumental in campaigning for improvements to services for women with PP across the UK. Women who experience PP have a very difficult and unusual experience of early motherhood. In addition, the stigma associated with mental illness can make it hard for them to talk about their experience. APP’s peer support helps women and families affected by PP feel understood, supported and less isolated”

You can still visit and donate to Sally’s JustGiving page here.

Nicola says: “In 2016 I was diagnosed with PP after the birth of my daughter. A relatively unknown mental illness that affects 1-2 in 1,000 births. This year to raise money and just as importantly raise awareness I will be running the Royal Parks Half Marathon with my amazing friend Jeni Dibley-Rouse who has been incredible."

You can still visit and donate to Nicola’s JustGiving page here.

Jeni says: “I am very proud to be running the Royal Parks half marathon for APP and supporting our friends Nicola and James. They have overcome PP with the support of this amazing charity. The work that APP completes is vital in supporting and raising awareness of the condition, please donate to help support the APP and help me through the last few weeks of training.”

You can still visit and donate to Jeni’s JustGiving page here.

Anneka chose to support APP after her friend, APP Ambassador Laura Dockrill, experienced PP. She says: “In 2018, postpartum psychosis tried to steal my friend Laura Dockrill from her son, her partner, her family and friends. From her very own life. When Laura was in the psychiatric hospital, I wrote her a poem to act as a mirror, to remind her why she is the best friend and human being. Laura not only survived but, as she says herself, she surTHRIVED. And she has come out the other side an EVEN BETTER version of the best friend and human being! APP is a small charity doing big work – promoting awareness, funding research and campaigning to help more women and families surthrive.”

You can still visit and donate to Anneka’s VirginMoneyGiving page here.

Our four runners have raised more than £3,900 for APP. We would like to thank Sally, Nicola, Jeni, and Anneka for supporting APP and everyone who has donated.

If you have been inspired by our runners, we would love to support any fundraising ideas you have. Get in touch here.

Campaign for better care for postpartum psychosis this World Mental Health Day

It’s World Mental Health Day on Sunday 10th October 2021 and this year’s theme is ‘mental health in an unequal world.’

Each year about 140,000 mums around the world will experience postpartum psychosis. Their experience of care varies hugely. Within the UK inequality remains. In Northern Ireland, around 35 mums will experience postpartum psychosis each year, with no access to a Mother and Baby Unit. In Wales, 50 mums will develop postpartum psychosis: mums in the north have to travel to South Wales or over the border into England for care. Half of the mums in Scotland who need a Mother and Baby Unit bed still do not receive one. General psychiatric wards are inappropriate for newly-delivered mums, lacking appropriate facilities, access to specialist professionals and knowledge, and forcing separation from babies.

We are using World Mental Health Day to further raise awareness of postpartum psychosis and campaign for better care – including more Mother and Baby Units to help keep families together and to recover more quickly.

How you can help this World Mental Health Day:

Join APP's call for access to Mother and Baby Units for mums who experience postpartum psychosis wherever they live in the world. We’d love for as many people as possible to help us spread our message.

#KeepMumsAndBabiesTogether
You can help by sharing our social media posts on World Mental Health Day.

Find us on Facebook
Follow us on Twitter
See us on Instagram

Remember to tag @ActionOnPP and use the hashtags #KeepMumsAndBabiesTogether and #WorldMentalHealthDay

If you live in an area of the UK without access to a Mother and Baby Unit please get in touch by emailing app@www.app-network.org. We'd love to hear your story.

Other ways to support this World Mental Health Day:

Go The Extra Mile For @ActionOnPP
To raise much needed funds in support of our work, join our #MilesForMumsAndBabies fundraising challenge. This World Mental Health Day we are asking people to ‘Go The Extra Mile For @ActionOnPP’ and donate £2 to support our #MilesForMumsAndBabies 2021 campaign. Donate here: https://bit.ly/DonateToActionOnPP.

Sign the petition for a Mother and Baby Unit in Northern Ireland
Action on Postpartum Psychosis volunteer, Oorlagh Quinn, has set up a petition calling for a Mother and Baby Unit in Northern Ireland. More than 3,000 people have signed the petition so far but we need more signatures. Find out more about Oorlagh’s campaign for a Mother and Baby Unit in Northern Ireland and sign the petition.

Volunteer with us in Northern Ireland
If you have experienced postpartum psychosis and live in Northern Ireland we’d love you to become a volunteer with us as we try to build our peer support, campaigning and storytelling networks in the region - join the APP Network.

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.