My Postpartum Psychosis Story written by Eve

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1 My Postpartum Psychosis Story written by Eve Two days after my son was born, when we arrived home after being discharged from hospital, I suddenly experienced a feeling of panic that I had never felt before. It is so hard to explain. I actually think I started to have misgivings about Joe's existence while in the hospital but the reality of how bad I felt didn t hit until I left the ward. When we left hospital, as soon as I felt the outside air hit me, while strapping Joe into his car seat, I burst into tears. Uncontrollable tears. I couldn't stop crying. I was telling myself in my head to stop crying but I couldn't. It was as though I had no control over the tears. John asked if I wanted to sit next to Joe on the drive back to our flat. I shook my head and said no. I didn't want to be near him. We got back to our flat and as soon as we walked into our living room, I felt like I couldn't breathe. I felt a wave of indescribable panic come over me. I felt like I was being suffocated. I actually felt like I had a hand over my mouth and my mum said she noticed that I was pulling my lips. I was very scared of something. We posed for a family photo with me, my partner and my son, Joe and my parents. In the picture, everyone looks so happy but I am in tears. I didn t understand what was wrong. I had wanted my child so much and imagined I would be euphoric when he was born but what I felt was very, very different. My hands started tingling and my head started to pound. My head felt like it was going to explode as I had a sense of doom come over me. I suddenly felt I had made a terrible mistake in having Joe. The first week passed and the anxiety I was feeling worsened to a really severe state. I didn't like looking at my baby and I shook with nerves all the time I was with him. I was very, very scared of him and I felt tormented. I thought that I didn't like him, love him or want to be near him. I would sit on the sofa staring into space, banging my feet on the floor as I was shaking so much, repeating things over and over again. I started to become confused when I was getting dressed. I would stare at my leggings and not be quite sure what to do with them. I couldn t watch TV - I had a panic attack when I saw about 10 seconds of a scene in Eastenders. The screen shot looked dark and for some reason upset me. I was again repeating phrases over and over, usually saying I had made a terrible mistake. I walked round the house like I was on death row. I was convinced that at any moment something catastrophic was going to happen. I had a constant terrifying thought - my child was here forever now and there was no way for me to get away from that fact. I remember shouting at my partner saying that if he didn t like his job, he could get a new one but with a baby, once it is there, there is no turning back. I remember one morning John told me to have a long shower and relax a little. I can remember really clearly staring at the bathroom door thinking don t bring the baby in here. I scrubbed my skin until it was bright red and sore. I wanted to scrub the horrendous fear away but it wasn t moving. I felt like my baby had ruined my life. I was totally overwhelmed by him. I could not bear to sleep as I knew that when I woke up in the morning, I would have a racing, pounding heartbeat and uncontrollable fear. I dreaded morning times because of the fear I felt when I opened my eyes. 1

2 Over that first week, I kept saying to John that I had made a terrible mistake and that I didn t want Joe. This was the biggest symptom of anxiety that I suffered - the uncontrollable fear of the fact that I could not unbirth my child-that I was a mum forever and the enormity of this feeling ate me up. I felt like I was trapped as a mum, trapped in my life, and the worst, I felt trapped in the world. And that I wanted to get away from this world. I started to feel as though I was living in a terrible dream world. I found myself becoming increasingly confused when getting dressed and I thought the duvet cover was changing colour as I looked at it. I could not think straight. I spent some days crippled with fear, but then on others, the fear seemed to turn into strange mood were I cleaned for hours to try and be the perfect mum. John said I had turned into Mary Poppins as I militantly went round the flat cleaning. There was a particularly frightening day where I felt as though as I was looking down on myself from the corner of the room. In my mind I knew I wasn t floating in the air, but I felt like I was. The vision in one of my eyes kept blurring - it felt like someone was shining a torch straight into my eyeball. My mood seemed to change very quickly. I would have a minute of feeling like I could do it, I could be a mum and it was all ok and the next minute I would be trying to pull the hair out of my head. I felt like someone had cut the top of my head like a boiled egg and scooped out my normal brain and replaced it with mush. One night, our friends came round to see Joe. As I look back on this now, I can remember feeling as if I wasn't real. Their voices seemed muffled to me as I felt myself going into a panic attack. I went into the bathroom and sat on the toilet and felt frantic. I could see lights flashing in front of my eyes and it felt like my head was in a vice. I sat on the toilet pulling my hair from the roots to try and get the feeling of panic to go but it didn t. At the end of the first week after Joe was born, I went to see my GP. I told her I felt very low and anxious and I didn't love Joe. She made me complete the Edinburgh post-natal depression scale and I scored very highly. She said she was worried about me and to come and see her again in a few days. Which I did.she prescribed me with 50 mg of sertraline a day and said I was to see her next week to see how I was doing. I asked how long the pills would take to kick in and she said a few weeks. When Joe was nearly 4 weeks old, we went for a walk in the park. I felt a creeping fear coming over me and had a panic attack, telling John I needed an ambulance. I felt trapped, and told John I felt trapped in the world. I was in total fear. And I realised that this fear was of being alive as I realised I was trapped in this life forever. John then went back to work on the Monday, and it was that I started to realise how ill I really was. I spent a large part of the first day John went back to work sitting on our bed in tears. One of my NCT friends came to visit in the morning. I had tried to dress Joe after john had left for work, and it had taken about an hour to do. My hands were shaking so much that I just couldn t do it properly. When my friend came, she could see I was shaking. When she left, I was so afraid to be in the house with Joe on my own, I went for a walk to the post office to pick up a parcel. When I went into the post office, I didn t want to leave. I kept talking to the man behind the counter and when someone else came in to be served, I started crying. I realised I would not be able to talk anymore and I would have to go home. I went to the doctor again that day after booking an emergency appointment. I told them I was on medication but was feeling worse. They told me to carry on taking it and it would kick in 'in a few weeks'. The next day, John woke up and I refused to let him go to work. I was screaming that I couldn't be on my own with Joe. I remember holding on to him crying shouting over and over 'please don't leave me'. I begged him to stay at home and was totally hysterical. He didn t go to work, he couldn t. I was losing control if my senses. That evening I ran out of the flat in my dressing gown into the street as another massive panic attack hit me. My mum then came over that night to see how I was. She stayed with John and I that and she slept in the bed with me while john slept on the sofa with Joe in his Moses basket. I cried the whole night. I had my knees up to my chest and just wanted to bed to swallow me up. She cuddled me in her arms until the morning time. She says that I spent that night repeatedly sobbing the same phrase " when will this feeling go away?" and that I was hysterical. I went to the doctor again the day after saying I really needed some medication to help me with my panic attacks. I was told there was no more help except for me to wait for the pills to kick in. 2

3 One afternoon after I had been to the doctors again, and begged for help, saying I had been on the tablets for nearly a month and felt much, much worse, and was again told that I needed to wait for them to kick in. I went home and sat on the bed, crying into John as he cuddled me tightly. I was talking to John about how I felt and wondered why this had to happen to me and I remember I suddenly out of the blue screamed three times that no one is listening to me. No one is listening to how I feel". After the third time I said it, John heaved. He said he felt physically sick and had no clue what to do with me. The idea that I was now a mum, forever, was beyond terrifying. I was crippled with fear beyond my control. John called our health visitor (who was lovely) and asked to come round to our house ASAP. When she arrived she said she could see how ill I had become and suggested we stay with family to allow me to recover as there wasn t anything else I could do in London to help me. I wanted to go to my sisters but John asked if we could go to his parents again. He needed support as well as he was exhausted looking after me. I agreed as I wanted to help John help me. When we were in Nottingham at John's parents, I was having numerous panic attacks a day. I walked round in a daze, crying, terrified and tormented by my thoughts. One of John's mum's friends was a nurse and she said there was a mother and baby unit in the local hospital for women who had severe postnatal illness and so I was desperate to be admitted. I went to see the doctor twice to see if I could get into the unit. Joe was nearly 6 weeks old at this point. She asked me about my panic attacks and how many I was having a day. She increased my sertraline dose from 50mg a day to 100mg a day. I begged her not to, saying that I had been on these tablets for 6 weeks and felt much, much worse. I said I was having a constant panic attack, scared of being in the same room as Joe on my own and I had an overwhelming fear of the future. John asked for me to be admitted to the unit but she said, lets up your meds and see what happens. The next day was when I totally flipped. I didn't think it could get worse but it did. I woke up unable to move from bed in absolute terror. The night before, after I had the doctor in the daytime, John had taken me to an emergency doctor in the middle of the night as I was desperate for help. I was convinced I needed to go into a mental health ward. We saw a doctor at the emergency clinic who asked if I had started to plan my own suicide. I said I had had thoughts about suicide as I could see no other way out and I had had thoughts about how I would do it but I had not started planning it yet. The reality is, I was so confused that I didn t have the energy or function to plan my suicide. She said I was considered low risk if I had not planned it and told me to go home. I was crying and John asked for another doctor to see me, explaining that I had been feeling like this for 6 weeks and that something needed to be done. She got another doctor who was much more understanding. John asked him how I get a place in the mother and baby unit and I begged him to help me. He said I was clearly very ill and that he thought I would be able to get a place in the unit as it did seem as I was clearly unwell. He phoned the unit up while we were there to see if he could admit me there and then. They didn't have any room, so he told us to go home and call them I the morning. I then woke up that morning feeling the lowest I had ever felt. My vision had blurred and I could not bear to look at Joe. I physically felt like I was glued to the bed and could not get up and just wanted to bang my head against a wall. I can remember John looking at me while I opened my eyes asking how I was. I shook my head and asked him to hold me. I didn't want him to let me go. I felt worse than I had ever, ever felt before. I told john I wanted to get Joe adopted and then said I wanted to throw myself under a bus. I really can't express how tormented I felt. I then again had a massive panic attack, saying that Joe had ruined my life, that I would never get used to him being here and that I could never be alone with him. I scrambled round for a piece of paper I had written the number of the Association of Postnatal Illness on (I had written their number down from the internet a few days earlier) - and spoke to a lady. As soon as she answered I blurted out I want to get my baby adopted, please, please, please, please help me. I need someone to help me" who was so lovely and said I was not evil or strange. She said she had spoken to hundreds of women with postnatal illness and that I was not alone. She told me that I should push for a psychiatrist to see me and she spoke to John and explained to him that I would get better but that it may take a while and that I needed professional help. After this, John was on the phone all morning trying to get a psychiatrist to come and assess me to see if I could get into the unit. While John was on the phone, I had another panic attack. I was walking up and down the stairs of the stairs over and over again, convinced something horrendous was going to happen. I went into the bathroom and looked at the razors in the cupboard. I sat on the side of the bath crying, wondering 3

4 how having a baby could have made me feel like this. I felt like didn't want to exist anymore. I felt I had nothing to offer life.but something in me knew I couldn't end it. I couldn't bear for John to be on his own. I loved him too much. He had said to me all the way through this that he couldn't be without me. I also felt like I couldn't do it to Joe. My head was in a mess. I had a desire to be dead but also couldn't bear the idea of Joe to not have me as his mummy. John shouted through the door, asking what I was doing. I opened the door and was hysterical, screaming saying I felt living was too hard. I ran out of the bathroom and wanted to run away. I had never ever experienced a feeling like it. I was becoming scared of myself. I then ran into John s parent s bedroom and began crawling around their bed on my hands and knees, screaming. John phoned the hospital again and demanded a psychiatrist see me. We went to the hospital and walked into the psychiatric outpatient s clinic and I was crying. However, when I saw the psychiatrist, he was so nice to me, I felt like I knew he was going to help me. He spoke to me gently and for the first time, I felt like I could tell someone how I really felt. I told him I was scared of being honest as I didn't want social services to take Joe, but he said that perinatal psychiatrists like him (who specialise in post natal illness) knew that the dark thoughts women have when they have postnatal illness are just that - thoughts. He said he knew I would never harm Joe or myself - he said he could see I was desperate for help and the reason I wanted help was because I want to be happy with my son - which meant I loved him. I poured out my feelings. I must have seen 10 different GPs between London and Nottingham the past 6 weeks and none of them seemed to understand that I didn t just feel a bit down. I had been saying I felt like I was lying in a coffin that was nailed down but they kept saying it would pass and that I had to give the anti-d's more time to kick in. The psychiatrist was nodding as I was speaking and made me feel like it was ok to tell him the darkest thoughts that had passed through my head. He did not seem shocked by what I was saying. He said they had seen hundreds of women who had felt like me. I said my main gripe was that I thought Joe had ruined my life. I was so anxious that he was here forever. And that my jumbled up thoughts were confusing me. He said it sounded as though I had experienced some symptoms of psychosis and said he would change my anti-d s and I would also need to take anti-psychotics for the next few days. He then said he would be admitting me to the mother and baby unit. That day, as soon as my assessment had finished, I went into the unit to begin my recovery. As we walked down the hallway and I saw the signs saying psychiatric wards, I was crying. John held my hand tightly and kissed my forehead. He told me he would never leave me, that he would love me forever and that I was going to get better. The nurses were amazing. As soon as I walked into the unit, they gave me a hug and promised me things would get better. One of them gave me a folder to read which contained letters from women who had been in the unit and recovered. The stories gave me hope. And they had got better. The unit did not look like a hospital ward, or indeed what people's perception of a mental ward looks like. There were 6 bedrooms, a lounge, a bathroom, shower room, a kitchen, and a washing machine. I was shown to my room and found that Joe would be sleeping in the room with me in a cot. I was beyond terrified - the times when I had been on my own with Joe, I couldn't cope, or at least felt I couldn t. I refused to sleep with my bedroom door closed that first night when I went into the unit. I could not bear to be on my own with Joe. However, a week later, after lots of support from the nurses, and John, who stayed with me from the moment the unit opened in the morning, until 9pm each night, I closed the door, and was on my own with Joe- and the nurses gave me a cuddle. It was a massive step for me to take and the most ground-breaking turning point in my illness. There were nurses on duty 24 hours a day but in the unit, you are encouraged to spend time with your baby and bond. I washed Joe's clothes, sat with him in the day, looking out of the window and reading to him and when I woke up in the night having panic attacks (which were very frequent); I could go to the lounge and talk to a nurse to calm down. They also changed my anti d's. The original ones prescribed had not worked and so I was prescribed Amitriptrline - 150mg per day. I was also placed on anti-psychotics. I found these took effect very quickly. I didn t feel quite so manic and I couldn t feel my heart beating so hard. My time there was very difficult - I had debilitating panic attacks and felt scared but the help and support of doctors and nurses who understood PNI helped me on my road to recovery. The nurses 4

5 said even though I felt like I was a rubbish mum, they had observed that I was very caring towards Joe and needed no support looking after him. This lifted my confidence. I think I had become overwhelmed with people/magazines/tv programmes/blogs etc. giving conflicting advice on how to be a mum to Joe. The nurses in the unit told me that how I wanted to raise Joe was all that mattered and to be confident in how I choose to do this. I was also still breastfeeding Joe. Throughout all of this, I had fed Joe solely through breastfeeding. There were times when I couldn't look at him but I still fed him. I realise now that this was me trying to bond with him, and for me, breastfeeding has increased that bond - I'm feeding Joe now and he is almost four years old. I realised how ill I had become when John and I were allowed to leave the ward one morning to go to the coffee shop upstairs. I felt like I couldn't bear to be enclosed in a small space but had started to become scared of open spaces. We got to the coffee shop and I realised I needed the toilet. It was about a 30 second walk from the shop but I was so scared of walking to it on my own. I was shaking as I walked to it and felt disorientated My recovery has taken a long time. But I am better. I had to spend a few minutes on my own with Joe each day and then had to build this up to walking to the local shop. A few weeks later, I had to spend the afternoon on my own with him in the house - exposure therapy. I was to then spend all my time with Joe to accept that he was here. We spent 3 months in Nottingham all together, with John having to take compassionate leave from work, to get me to a point where I could come back to London. Coming back however was problematic - as soon as the mother and baby unit discharged me from their outpatients and my care was taken over by the local mental health team in London, things turned sour. I still to this day, almost four years after my son was born, haven t been seen once as an outpatient at my local London mental health team. The mother and baby unit sent numerous letters asking for me to have outpatient care - but this never happened. I was very lucky that the mother and baby unit agreed to keep me on as an outpatient for a year, but this meant I had to travel up there once a week to see the doctors there - at a massive expense to us as a family but one that was essential to ensure I was fully supported while my recovery was on-going. I m lucky I have a supportive family - I dread to think what would have happened if I had not had their support and entered the unit. In terms of recovery, I love my son, adore him, and can enjoy life. I truly believe the right medication; therapy and entering the unit saved my life. Within a couple of weeks, I felt a small, but very definite, anxiety reduction. Recovery isn t easy but I am well, and I can function, and I don't think Joe was a mistake. Without knowing it, I developed a natural love for Joe. I totally adore him. He is my world. He and John, my two boys, are my life. Medication helps your thoughts to function properly again and you can start rebuilding your life. John was amazing - it must have been awful for him, but he supported and loved me all the way through. I love him and Joe so very much. When I was in the unit, I used to think the nurses were crazy saying I would get better. I thought I would be the only person to never recover. But I did of course. That was the illness talking. 5