This seems like an random title for a post, even more so when I reveal that today I want to tackle the subject of Post Traumatic Stress Disorder or, to give it its catchier title, PTSD. Before July 2014 I had heard of this condition and thought that it was something suffered by war veterans and that it consisted of nightmares and vivid flashbacks. Beyond that, my knowledge was questionable. In the eighteen months or so that I’ve been living with this condition myself I have learnt a whole lot more about it, very little of it of a professional bent. Here is a description of the condition:
Posttraumatic stress disorder (PTSD)[note 1] is a mental disorder that can develop after a person is exposed to a traumatic event….Symptoms may include disturbing thoughts, feelings, or dreams related to the events, mental or physical distress to trauma-related cues, attempts to avoid trauma-related cues and alterations in how a person thinks and feels. Those with PTSD are at a higher risk of suicide.
So why ‘Mushrooms on Toast’? Because PTSD is a world made up of little triggers and flash points, and I recently discovered that mushrooms on toast is one of mine. As I sat down to write a post the other day in my favourite beach cafe, baby M sleeping quietly at my side and crashing waves a backdrop to the sound of my keyboard, I ordered a coffee and some breakfast. I love mushrooms on toast. In fact, this was what I ordered myself that morning of July 17th 2014 when Romy and I visited a small local cafe in a neighbouring village on a blisteringly hot day. This was a treat; it was the last day of nursery for our older daughter before she left to begin school the following September. Our son finished his summer term at school the day after that, so these were the last few moments of peace and quiet before the chaos erupted. As we completed the school and nursery drops and drove away in the car, I actually said out loud to Romy, ‘Well Romy, this is our last day together.’ I meant that it was our last day together before her brother and sister joined us for the summer holidays, not our last day together on this earth.
I was determined to make the most of this time and as we settled down in the cafe I felt happy and relaxed. People were bustling in and out of the venue and the sunshine was making moods light, so every second customer was stopping to compliment me on my beautiful baby and admire her as she smiled. My mushrooms on toast arrived and I laughed as I struggled to eat them with a knife and fork while Romy squirmed and giggled on my lap. I thought about the bag of weaning paraphernalia I had purchased the week before and felt excited at the prospect of soon being able to introduce her to solid food. I recalled my mother telling me that she had craved mushroom omelette almost every day that she was pregnant with me. I wondered whether Romy would love mushrooms as much as her mother and grandmother.
Back to several days ago at the beach cafe and my mushrooms on toast arrived. Without thinking too much, I took a forkful and I was right back there in that cafe in July 2014. I felt suddenly very confused. I looked at my sleeping son and saw Romy. I felt the sun on my face and was feeling that blisteringly hot July heat. I started to panic as past and present blurred together and for a few seconds I believed that my new baby was in fact my youngest daughter. The feeling is very much like being frozen in a nightmare, where you’re faintly aware that what your mind is telling you is not real, but the feeling of it is so authentic that you believe your own spin. I struggled to breathe for a moment as I strove to convince myself that this baby was my son; that he was not going to stop breathing, turn blue, that I didn’t have to feel helpless and unable to save him. I breathed. It passed. This is Post Traumatic Stress Disorder and it took several months after my daughter died before I got a diagnosis.
A mere two weeks into my grief, still very raw, confused, in shock and very erratic emotionally I visited my local GP to ask whether I could be referred for some counselling as I had already identified that I wasn’t coping well at all. She asked whether I was eating and sleeping; I answered that yes, to my surprise I was doing both, largely because our fantastic friends and neighbours had organised a food rota and amazing dinners were arriving at our door every afternoon so we wouldn’t have to think about food. This turned out to be a bigger blessing than we had imagined as, free of culinary shackles, I was able to sit down with my husband every evening to eat and, crucially for us, to talk. You know what it’s like: cooking, work, kids, phones, emails and TV all get in the way of sitting down and having a conversation with your spouse from time to time over a home cooked meal. The simple act of connecting over food and talking honestly with each other was so powerful for us that we continue a commitment to do this to this day, both with and without our children. I was also very surprised to be sleeping soundly most nights, however in retrospect I believe that my body was in such shock and trauma that it couldn’t wait to switch off and sleep as a way to avoid processing all the unwelcome thoughts, feelings and images of grief.
The GP’s response to this information was to say, ‘Well I can’t refer you to counselling yet as it’s far too early. You have friends and family supporting you at the moment and you seem fine. Wait until three or four months afterwards when it’s really bad, then I can refer you. In the meantime I’ll prescribe you something.’ I politely explained that I didn’t feel the need for medication at the moment, just someone to talk to. Then I left the surgery, wondering why I had bothered to go at all. I should stress that this was not my usual GP, but the whole experience had such an effect on me that it prevented me from seeking help for some weeks when eventually, close to breaking point, I visited my usual doctor to be told immediately that I had classic PTSD symptoms.
As far as I can understand, the symptoms of this untameable beast are many and diverse, but those of us who live with it can all relate to a large number of them. For me, they take the form of flashbacks, usually triggered by something I relate to the 48 hours I spent with Romy as she became suddenly ill and died. Mushrooms on toast is one such trigger. Ambulance sirens are another one. I have now managed to contain my reaction to the point that if an ambulance passes me while I’m driving I just need to grip the wheel tightly and take a few deep breaths. However this one has produced a reaction so intense that on more than one occasion I’ve had to pull off the road and breathe into a paper bag. We were blue lighted from our village to a large Brighton hospital, and then within a few hours blue lighted to Kings College Hospital in London, with sirens blaring the whole way. When I see an ambulance and hear those sirens very often I am visualising my tiny daughter in the back of that ambulance, surrounded by medics holding her head steady and keeping breathing apparatus in place. I feel powerless and very, very afraid.
Since our son was born I am incapable of sleeping without a light on at night because I have to be able to see him at all times. This extends to our older children too. If I can’t physically see them while they are in my care, I feel panic rising very quickly as my mind draws all kinds of scenarios in which they might be at risk. Always a little nervous about being too far away from my children, now that one of them is no longer with me this has turned into full blown paranoia. It can quickly escalate to the point where I feel like I can’t breathe. I am constantly on High Alert.
There is no way on earth I can be a plane journey away from my children. This is because my mind is continually imagining the situation should one of them become ill or have an accident. I can barely recall the phone call my poor husband had to take from me, telling him to come home from London immediately because Romy had stopped breathing and we were being taken to hospital. I can’t imagine how awful that call must have been for him to receive, and how he must have felt on that journey. Thank goodness he made it to Brighton in time to be with us, but for me, being away from my children in almost unthinkable. ‘What if something happened and I couldn’t get back?’ is a question I ask myself over and over again. I have drawn a huge amount of comfort from the fact that we were both with Romy as she passed, and the thought of any of my children being upset, in pain or, heaven forbid, dying alone without me by their side, is unbearable. My underlying belief is that my one job as a mother is to keep my children alive and I’ve already failed at this once. I can’t fail at it again because this would break me completely.
I haven’t been able to go back to the village I visited with Romy, or that cafe, because just thinking about it feels terrifying. I have no idea how I managed to continue to live in the house she was born in for so many months. I loved that house but I can honestly say that it became like an emotional prison. I couldn’t sit on my sofa without ‘seeing’ in front of me the horrific scene that I had witnessed unfolding. My baby on the living room carpet, her clothes cut off, with defibrillators and breathing equipment and people running around. An air of panic. The dawning realisation that the seasoned medical professionals in my home were as bewildered and frightened as I was. We vacated that house within the year, and I even had to get rid of the sofa. Romy was born on that sofa and, to me, part of her died there too. I was surprised that I didn’t feel as over attached to it as I anticipated being. Instead, the memories are so painful I had to put the instigator of them as far away as I could.
As you may be starting to see, PTSD largely convinces you that you are back in that moment. It can strike at any time, anything can be a trigger and for the few seconds or minutes that you’re in its grip, you really are there, back in the past. You really believe what you are seeing in your mind’s eye, which for me is an utterly terrifying experience. Even when I’m in the middle of an ‘episode’ I can hear my conscious mind telling me, ‘This isn’t real’, but my subconscious mind won’t accept this at all.
In addition, I find that my short term memory is shot, which is incredibly frustrating as I am by nature an organised person who used to pride myself on my brilliant recall. Now I really struggle to remember names, events or occurrences, even if I’ve written them in a diary. My husband, used to being ‘the absent minded one’ for the past twelve years, now has to constantly repeat details of appointments, meetings and discussions we have had as I just can’t remember them at all. I am on a daily mission to try to remember the day’s date, as one of the most useful (and simple) techniques I was taught to combat my PTSD involves taking a deep breath and saying out loud to myself, ‘Today is the (insert date) and we are all fine.’ Obviously I’m aware of how downright weird this could make me look in the middle of Sainsbury’s but it does actually work. However given that I often struggle to remember the day’s date, I have had some pretty funny ‘conversations’ with myself on this front!
Living with PTSD for many of us often involves treading a line between taking care of our mental health in a responsible way and trying really hard not to ‘give in’ to a condition which sometimes puts us in faintly ridiculous situations which can quickly escalate.
While expecting our youngest son last year, we moved from our small Sussex village to Brighton. This required me to move my maternity care to a large hospital; the very same hospital where I arrived to the children’s A & E department in an ambulance with Romy almost two years ago. Thanks to our wonderful angel of a midwife – who having seen us through three out of four pregnancies is also now a very dear personal friend – we were spared a lot of deeply distressing visits to this hospital as she volunteered to pretty much give us private midwifery care and see us at our old hospital to save us having to revisit the scene. However, although hoping for a fourth home birth I had to accept that should a hospital transfer be necessary I would be brought to this place. I decided that I needed to conquer the demon and agreed to visit to see a consultant and have a scan.
We had revisited the hospital once before. The day after Romy died, we decided impulsively that we should pop into A & E and thank the staff who had worked so hard and so tirelessly for our daughter. I honestly don’t know why we both thought this was a good idea at the time. We got as far as the reception desk before my husband broke down, quickly followed by me. We garbled our gratitude and left quickly to go and sit on the beach and lick our wounds.
The day of the scan saw us trying to find our way through the vast tunnel-like system of the hospital trying to locate the antenatal department. We got in a lift and looked at the floor plan and it was then that we discovered that the sonography department is, in fact, right next to children’s A & E. The exact place where we had been with Romy; that very room. It was unfortunate that I received this information while in a lift as it just added to my sense of entrapment and panic. I started to have difficulty breathing. My husband realised what the issue was, somehow got us out of the lift and into another department where I could sit down. We didn’t have that appointment that day.
Thankfully, our son was born quickly and safely at home but it was a source of constant terror that I would have to go and give birth in the hospital to which my daughter had been brought and I went to extraordinary lengths to try and avoid that outcome. PTSD does that; and often on a far smaller scale with trips or issues that seem much less important, but to those of us who suffer, it is a big deal because it all takes us back there to relive events that we are desperately trying to forget. These can also be happy events or memories and we avoid those because they are too heartbreaking to recall.
Possibly the symptom I attribute the least to PTSD but which can have a great effect is the sense of isolation, irritability and guilt. All these, of course, can come with grief but they often occur for me after I’ve had an episode where my mind attempts to replay those events I want so much to forget. It’s exhausting to be such a prisoner of my own mind at times, which makes me feel frustrated with myself. I look at my three remaining beautiful children and ask myself how I could possibly ‘allow’ myself to fall victim to such ridiculousness. Why can’t I just ignore it and enjoy my children? The mind is a very powerful thing. It can feel incredibly isolating to live with PTSD. Some counsellors are trained to deal with it and others claim to be but their methods are all very different, which can feel confusing and annoying. One told me that talking about what happened would help; another that it would make things worse. A third confused it with depression. PTSD is an extremely complex and subtle condition from the outside which feels to those living with it as if they are constantly running full pelt into a brick wall.
From my own personal experience, I have found the simplest approaches to be the best. Our lovely midwife friend told me about 7-11 breathing, which actually helps (I guess it’s a more sophisticated version of blowing into a bag), as does the simple date repetition mentioned earlier. Once or twice I have found myself offloading some horrible detail onto an unsuspecting friend, my mum or my sister and the fact that in each situation they have been able to simply listen has been very helpful. If it’s out there, it’s not in my head, at least for a short time, and that gives a lot of relief. My mum and my sister in particular have a great way of reassuring me that my mental state is ‘normal’, or to be expected. After almost two years I am also starting to feel the need to fill in some gaps in my recollections; even the unpleasant ones. I have some huge blank spaces from our time at King’s, which my sister is helping me to recall. I can only remember snapshots of the funeral; my closest friends are helping me to paint these back in. Just this morning my very kind and understanding GP sat with me while I cried and told me he would arrange for some specific counselling for me, to help me make some sense of what is happening in my mind. I wouldn’t have made it to his office at all had it not been for Sue, my fantastic bereavement counsellor, who’s been gently prompting me for weeks, and my husband, who accompanied me to the appointment as I felt too overwhelmed to go alone.
In the end, as with any difficulty in life, you cannot run from PTSD, grief or any other unpleasant situation. It has to be faced; calmly, with grace and a willingness to understand and to learn. It is one of the biggest frustrations of my life that I find this so difficult but I am committed to getting there one step at a time. If you know, or are supporting, someone who is living with PTSD or any other trauma-related condition please know that sometimes the simple act of listening is hugely reassuring. Answer questions as best you can, even the painful or difficult ones. Tell them that their mind is simply seeking to make sense of a shocking occurrence. Tell them that, however much they may want to go back in time and make everything okay, this clearly cannot happen. The reality is in the now; this is what we must face. As always, the simplest approaches are the best and just being there to hold a hand, to hug or to talk about the loved one or trauma (if this is asked of you) can be of the most help.
Today a friend shared a poignant video of a young mother who, ten years after an accident that killed her husband and seriously injured their baby son, revisited the hospital where they were treated to thank the staff members for their care. I found this deeply moving, particularly as our own initial attempt to do this was so unsuccessful! I have made a pledge to myself that I will revisit both hospitals to thank the many people who tried so hard for Romy and were so affected by her. In order to do this, I must start to conquer my PTSD. I’ve been very nervous about taking on any more counselling. To be honest, I feel ‘counselled out’, I think I’m suffering with ‘counselling fatigue’ to the point that even considering any more of it is almost as stressful as the mental condition I’m trying to alleviate. I’m also very aware that I could possibly be slightly in denial. So now it’s out there: I am going to take a step forwards into the less pleasant aspects of my own mind, I am going to face what I need to and I am going to step back into those hospitals and give thanks to the many incredible individuals who so deserve it.
And then I’m going to go and order myself some mushrooms on toast.