Excerpt from chapter 3 - When your Blessings Don't Count by Linda Lewis
My pregnancy with my first child was glorious. I had never felt more at peace and more content in my life than in those nine months. My husband and I planned the pregnancy and, although we had no family in Cape Town (where we live), we felt like a self-contained unit and were elated at the thought of having a child.
Around my due date I went into false labour – very tight but not necessarily painful contractions – and after admitting me my gynaecologist eventually decided to break my waters to induce labour. At that point, on Friday afternoon at about 2:30 pm, the maternity staff told us that it would take at least eight hours until the delivery. My husband decided to pop in to work and finish off a few things and then return in a few hours. I was very happy for him to go and felt calm and relaxed about the situation.
Twenty minutes after he left I discovered that I was releasing meconium and I called the labour nurse. She checked to see if I was right and, without saying a word to me, phoned my gynaecologist. While she was waiting to be put through to him, she signed with her hands to me with a slicing movement over her abdomen. I looked at her in horror and said, “Do I have to have a Caesar?” Still not saying a word to me she nodded. Then my gynaecologist must have come on the phone because she started talking away to someone. At this point I went deaf and my body started to shake from the terror of having to go in for an emergency C-section without my husband, with no one to contain me and without anyone having informed me what was actually going on. The nurse must have pressed a button or something because the next moment a stream of green-clad surgery staff came into the room and started prepping me. No one had communicated a word to me yet! Eventually one dear woman remembered I was there and held my hand and explained that the anaesthetist would be with us in a moment to administer an epidural. I asked if I could phone my husband. It was before the days of cell phones and I could not get hold of him. I left a message for him to come to the hospital immediately, then phoned my twin sister in Johannesburg and told her to get on a plane straightaway – I needed her next to me. I couldn’t get through this without her. I was scared. My heart was pounding and there was all this activity going on around me and I didn’t have my dear husband nearby. The poor man, in the mean time, was stuck in Friday afternoon traffic, desperately trying to get to the hospital. We joked later that the only time either of us ever used the breathing exercises we learnt in antenatal classes was him on his drive through to the hospital, trying to stay calm. Eventually, while I was lying in theatre, he came in and within seconds the procedure started.
My husband was flustered and felt estranged from the whole process. It was very difficult for him to walk into the urgency of the situation and we were both unprepared for how quick a C-section is. It felt like our baby boy had entered our world within seconds and I was overwhelmed and, yes, elated (not everyone feels this immediate surge of maternal love as you shall see later). I cried and was desperate to look at him and hold him. My husband held him near my face but I could barely see him. I was shaking so terribly from the epidural that I couldn’t hold him. Suddenly my baby was whipped away along with my husband and the staff and I was left in recovery shaking violently from the epidural and feeling completely alone. This was at 3:30 pm. By 11:00 pm I still had not seen my son. His body temperature was not rising and a nurse had come to tell me that he was in a “touch-and-go state” and was lying in an incubator in high care. My epidural had not worn off so I couldn’t walk over to high care to be with him and because he was in an incubator they were unable to bring him to me. I was desperate. I didn’t even know what he looked like. I kept thinking that I wouldn’t be able to recognise him in the nursery – I had not been given an opportunity to get to know him. Eventually I phoned the paediatrician and after all sorts of negotiations my bed was wheeled into the high-care unit. There was my boy, lying in the incubator. I couldn’t hold him – oh, what a loss for me – but I held his hand and stroked it and spoke to him. It is painful for me to even write about this now because we missed out on so much in those hours that we were separated – irretrievable hours where we could have been skin-to-skin, smelling each other, hearing each other, loving each other.
When I think back to my days in hospital following the birth of my baby boy, I can see that this was where the anxiety had started. I had not yet identified it as “anxiety” per se, but the symptoms were there: I welcomed sleeping pills at night for fear of not sleeping. During the day I would put signs on my door for the nursing staff not to come in if I was sleeping and never to wake me up. Suddenly sleep became all important – and I had never before in my life felt neurotic about sleep. The other telling symptom was my reluctance to see visitors. Whenever visiting hours arrived I hated having to face people and make small talk. I just wanted to be left alone to do my own thing – to stick to the rituals and routines I was setting for myself even in hospital without wanting anyone to interfere with them. My gynaecologist reassured me that this was normal and said that visitors were the enemy! He made me feel that I was no different from any other new mom, but I realise now that from the very beginning I was retreating into a cocoon; I was scared and I was slowly detaching myself from the “real world” which suddenly seemed like foreign, overwhelming chaos. I did not want to leave the hospital. I so welcomed not having to take responsibility for feeding myself (and others). I was being cared for round the clock and sleeping whenever I wanted, since everyone was looking after me and our baby. The thought of going home was beyond petrifying. These are all the early symptoms of postnatal distress but nobody picked up on it. The lack of knowledge about PND at that time was astounding – I was so obviously sinking into a dark hole but nobody was any the wiser.
I thought that breastfeeding would come naturally to me but soon learnt that it was anything but a natural instinct. My breasts were so engorged and huge that my poor boy would latch and then practically drown in my milk. He would gulp and squeak and the milk would dribble out the sides of his mouth – I was causing him such discomfort. Every staff member at the hospital gave me a different technique and a different position to try. It wasn’t simply a matter of cradling my baby in my arms while he calmly suckles. I had to lie on my back (defying the gravitational pull of my breasts) to slow down the milk flow with my baby resting on a cushion on the side of my body so that he could reach my nipple. It was anything but serene and beautiful. I persevered; I wanted to feed my baby and when it eventually started to become easier it was the most gratifying, lovely experience.
As wonderful as this was, however, I was becoming more and more desperate about how much it was eroding my possible sleep time. I became obsessed with how much sleep I got. After a few weeks I would start calculating, from the moment my baby woke for a feed in the morning, what time I would be able to go to sleep that night. Sleep became my total and utter focus. It is difficult to convey the extent of this worry around sleep – it became an all-consuming and irrational obsession and the more I panicked about sleep the less sleep I got. I would lie in bed, riddled with anxiety, unable to clear my mind. The same thoughts would go round in my head like a stuck record. Sometimes it wasn’t even a thought but rather a song and I could not get that song out of my mind for days on end.
I was slowly but surely withdrawing from my normal world of activity and socialising. I couldn’t read a book or watch TV because I had zero capacity for concentration. I couldn’t mix with friends and family because all I could possibly talk about was how I was feeling. I couldn’t leave my home because I desperately needed its containment. The internal dialogue that played out in my head could not be switched off for even a second and sometimes I wished I could just chop off my head so that the continual internal chatter would stop. The smallest task became insurmountable – whether it was brushing my teeth, bathing, making sandwiches for my husband to take to work or preparing a meal. Having to buy groceries was torture. I had no appetite whatsoever (I lost 14 kg within three weeks after delivery) and I couldn’t believe that anyone could possibly want to eat anything other than bread and butter. Then, being in the supermarket and having to walk up and down those aisles making decisions while I was consumed by panic and dread, was more than I could manage. On more than one occasion I abandoned my full trolley while waiting in the queue to pay, because despite the major victory of having actually filled the trolley, my anxiety was soaring and I could not tolerate another second of being away from home.
I sometimes phoned my poor husband twenty times a day at his work, needing to report to him exactly how I was feeling. I could not keep my anxiety to myself; I was overflowing with it. I could not stop talking about myself and what I was going through and my husband got the brunt of that because of our isolation from the rest of the family. I was one hundred per cent dependent on him for my survival. If he said he would be home at 5:00 pm I would start pacing and timing his return home from hours before. At about 4:30 pm I would phone to check that he was nearly finished. At 4:45 pm I wouldn’t just look out the window to see if his car was there, I would actually walk to the main road, holding my baby in my arms and looking in the direction from which he would be coming so that if I spotting his car from a distance, I would have marginally less time on my own. This from a woman who was independent, competent, pretty self-sufficient, highly capable and had only weeks before completed her Honours year with distinction. I was finished! I was more than finished – although I never thought of suicide as such, I did think that this affliction would kill me. How could I possibly survive another week, day, minute with this agony of anxiety that was consuming me?
My in-laws came to stay with us for the first few weeks after our son was born and they were extremely supportive and caring although they could not understand what was wrong with me. The truth is, none of us understood what was wrong with me and although I was expressing my anxiety to my gynaecologist, the paediatrician and the clinic staff, no one even vaguely suggested that I may have PND. The health professionals seemed to think that this was just difficulty adjusting and that what I was going through was pretty normal. The day my in-laws left I felt bereft; I was petrified of being alone without their hands-on support and containment. They had made me feel safe and now I felt completely lost. I fell into a downward spiral. When my son was six weeks old I flew to Johannesburg to stay with my mother and my ister. As I saw my mom at the airport I just said to her,“Mommy, I’m really bad”. She was remarkable in her calmness and apparent lack of concern. She told me she had already made an appointment with a psychiatrist and that everything would be all right. My anxiety was so overwhelming that I could not even cry. I had an unstoppable tremor in my hands and a sensation of burning up from the inside and down my limbs, so I would sit all hunched up with my arms folded tightly across my chest, trying desperately to hold the painful anxiety and contain my body.
The psychiatrist immediately told me to stop breastfeeding so that I could go onto medication. (This was 15 years ago when it was considered unsafe to be on antidepressants while breastfeeding. Today this is different and I discuss this topic under biological factors.) Although in many ways I felt relieved to give up breastfeeding because it would mean that I could sleep more and have other people help me feed, I cannot express the heart-wrenching sense of loss that I felt. Not only was I letting my baby down, but I was failing myself. I felt utterly devastated that this was happening to me. I will never forget the last feed that I gave my son. I was alone in my mother’s house and lying in her bed feeding him and I just kept telling him that I had to do this for us, for him and for me. I told him that I knew I could be a better mom and I had to do everything possible to get better, even if that meant not breastfeeding him. I knew I had to go onto medication letting go of feeding him caused me much pain. I completed the feed and that afternoon I strapped my breasts in bandages and had a Parledol injection to stop the milk production.
I started the medication that same day and I remember the relief I felt at the prospect of getting better. Up until then I had truly thought that I would never recover. My husband and my family kept telling me I would get better but I did not believe them. One comment that did reassure me and stuck in my mind as an anchor of hope was the psychiatrist saying, “In a way I hope you never recover because then I could write this into medical history as the only episode of PND that did not resolve.” I still believed that I would be that only person.
My story of recovery does not end there. Going on medication is a process of trial and error and in 1993 we didn’t have the choice of sophisticated antidepressants that we have today. I think I tried 14 different medications in different combinations before we found one that took away my anxiety. In the process I felt like what I called “a blithering bunch of side effects”. I had to wait for the medication to start working and because, as does happen sometimes, it initially aggravated my symptoms, I had to take other medication to manage the soaring anxiety, which came with even more side effects. In addition, I could not sleep at all. I was eventually prescribed two Rohypnol (the strongest sleeping pill) and a Dormicum (another sleeping pill) which together would give me a maximum of four hours’ sleep. I was drugged and dysfunctional but still burning up with anxiety. I had no appetite whatsoever and I lost a massive amount of weight. I was agitated and had a continual tremors in my limbs. My hair was falling out in clumps and I was told this was normal. I felt like a weak old woman who was fading away into a dark shadow of the young girl I once was. Nothing seemed to be shifting my pain – I felt I was only getting worse and that I truly would never recover.
I could not believe that other people’s lives could carry on as normal; that they could discuss trivial topics and eat delicious food and want to go shopping and watch TV. I could not participate in any discussion unless it was about my anxiety and lack of sleep. I looked at people driving in cars laughing away and I couldn’t imagine what they could possibly be laughing at. I looked at other moms with babies and thought they were brave heroines for coping. I saw a homeless woman walking with her baby on her back and I envied and admired her for her anxiety-free appearance. I remember saying that I would never judge another mother again because just surviving motherhood is the greatest feat on earth. I was in a dark hole.
There was no way I could possibly fly home to Cape Town on my own. My husband flew to Johannesburg to accompany me back. Once back at home the most important thing for me was to find the right professional team to find a solution for my pain. I started therapy with a psychiatrist who was a trained Jungian analyst. I was desperate for any professional to save me and I was constantly calling my psychiatrist and gynaecologist, begging them to reassure me that the relentless anxiety would pass. I wished for someone to manage me to wellness. I wished that someone could step into my shoes and carry an iota of my pain for just a moment because then they would know how unbearable it was. Of course, nobody could do that – nobody would know the unforgiving torment I was going through every second of the day. Nobody would believe that I was verbally expressing but a fraction of what I was experiencing. It was the loneliest and most desperate place I had ever been in my life – I had to bear the agony alone; no one could take it away from me.
I must admit, though, that within the space of each day there were tiny pockets of relief. I am not saying I was without anxiety; rather that my anxiety was manageable for moments of time. My husband, the scientist, drew up a skeleton of a graph on which I would record my levels of anxiety from 4:00 am till 10:00 pm in the hope of finding some pattern that was predictable. It soon became clear that mornings were by far the worst time for me and that my anxiety would subside somewhat when my husband got home from work in the evening. I still couldn’t eat or sleep or watch a TV programme or read a magazine – I could only speak about what my body and mind were going through. I would sit with my arms tightly folded across my chest so that I could control the tremor in my arms. It felt like I had ants crawling through my limbs and that I was burning in my chest – all symptoms of severe anxiety. The worst part of the all-consuming pain was that it was invisible. I prayed for any physical illness that could be seen and identified as “real” rather than this amorphous, invisible mental anguish. I was desperate for my gynaecologist, my psychiatrist and my paediatrician to get together so they could decide on the best way forward. Needless to say, that was not going to happen. I then approached my GP to ask him to coordinate a joint course of action. By this time I was in a terrible state. The first thing he did was to have blood tests taken to check my thyroid levels and, lo and behold! my thyroid was extremely overactive. What are the symptoms of hyperthyroidism? Amongst others they are irritability, an altered mood, insomnia, palpitations, fatigue, weakness, weight loss, fine tremors, hair loss, muscle weakness and wasting.
That day I was put onto Inderal – a simple, cheap beta-blocker used to reduce the physical symptoms of an overactive thyroid. I always say there is no quick fix in the recovery from PND but within hours of taking the Inderal I was a different person – my body felt normal again! The tremors and the physical sensation of anxiety went away. The terrible thoughts that played in my brain started subsiding and I began to believe that I was going to get better. I couldn’t thank my GP enough for the magic he had made but as he said,“The whole team got the ball near the try line and I was just the lucky guy who scored the try.”
Was my first experience of PND simply an undiagnosed thyroid disorder? This is a big question to which I really don’t have the answer. What I do know is that the thyroid condition was a gift handed to me at the end of a terrifying journey. The gift was not only that I had a treatable condition, but also that I now had a “legitimate” reason for my agony and what I had put my loved ones through. A thyroid condition is measured with a blood test in a laboratory and the diagnosis is irrefutable. PND, on the other hand, is considered by the untouched to be a vague, unconvincing phenomenon; it is shrouded in judgemental assumptions about the competence and capability of the new mother. It was so convenient for those around me to blame this on my thyroid. My mother-in-law was very relieved to be able to say that I was suffering from a thyroid condition – from the beginning of my PND to this day she has referred to it as “That Postnasal Drip!” Jokes aside, I knew in my heart of hearts that it wasn’t just my thyroid and the proof came after the birth of my second child.
By the time my son was nine months old I had completely recovered from PND. I have seen this pattern repeated time and time again in the women I work with. I was yearning for another child. My son had to have a sibling and I couldn’t wait to have a positive postnatal experience – I was convinced that I would not get PND again. After all, I had been in therapy since my son was born and worked through many issues that may have been raised by his birth and, just as important, I knew exactly what to expect the second time around. My husband was very reticent.
My daughter was born when my son was 22 months old. I had an elective Caesarean section. In contrast to my first experience, she was brought to me half an hour after the birth and I loved and appreciated every second of my time with her, healthy and in my arms. It was a good start. The first two weeks were wonderful – I felt in control of things and I was adjusting and coping appropriately. I was breastfeeding and managing to sleep some of the time. But, to my utter devastation, it was not to last.
The feeling of anxiety started to creep in slowly and insidiously. When my daughter was six weeks old I was sitting in our garden and that unbearable anxiety raised its ugly head. I felt that familiar burning in my chest and the tremor in my arms and I knew that I had to start medication as soon as possible. I went inside to my husband and told him that the time had come to strap up my breasts with the old bandages I had used for my son. I had to stop breastfeeding and start medication immediately. This time round we knew what medication to take but once again the journey to recovery was torturous.
It was like an action replay – I mourned having to stop breastfeeding my daughter, I had my mother and sisters fly down from Johannesburg on several occasions, I was plagued with that all-too-familiar burning, unbearable anxiety, the insomnia, the loss of appetite, the need for continual companionship (what I called my bodyguards), the internal unstoppable dialogue. The weeks blurred into a fog of desperate calls for help to my doctors, my family and friends.
I remember that my father came to stay. He took me to Cavendish Square for lunch. I wasn’t comfortable about going but I was holding it together. He was enjoying his excellent fish curry while I couldn’t eat. Then suddenly I had a panic attack. He saw, first hand, how terrified I became and I just had to escape from the building and get home. I wouldn’t let him finish his food, I just told him to leave the money and take me home. I was devastated by that attack because, although it was completely out of my control, it destroyed my confidence. I felt I was back to the very beginning and I dreaded the journey ahead of me.
I see in my journal that when my daughter was four months old I felt a desperate need to write down a list of every single symptom I was experiencing. I felt like I was going mad. I want to list those symptoms now as I wrote them because maybe they will help others not to feel so alone in what they are experiencing.