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Speaking the Previously Unspeakable - Long Version

February 25, 2018

 

*** Okay, this is my brain dump post. I haven't done the final edit on it and I don't think I'm going to. It's here for anyone who needs a little extra information on my story or if you have any questions from reading my original post, this might answer them.

It's not pretty at times but what I want you to take away is that I am well on the road to recovery and live a completely normal and happy life :-)***

 

So here we go....

 

Ahem...

 

Hi, I’m Catherine. I live in East London with my husband and my awesome little boy William, who has just turned five… and, you also probably need to know that I’ve lived with Obsessive Compulsive Disorder for as long as I can remember.

 

As some of you may know already, I’ve spent the past ten months talking and writing about my history of OCD. I’ve done this as I’ve really hoped it would help to spread awareness and squash stigma. I must confess that getting it all out in the open has also been a massive help for my recovery too. Although I’ve often mentioned how bad my spell with postnatal OCD was, I’ve never actually gone into specific detail about the symptoms, I feel ready to do that now and really want my story to help others going through the same thing, there really are so many of us going through this.

 

Pre-motherhood OCD

In the years before little William came along, OCD for me mainly focussed on keeping my loved ones safe, so: checking things, counting things, performing rituals in a particular order, and/or continuing until they felt ‘just right’. My obsessions generally centred around ‘bad things’ happening to the people I loved, and the compulsions were physical actions that I carried out to help lessen the likelihood of the ‘bad things’ happening. My OCD continued this way - on and off – and to varying degrees of severity, throughout my childhood, adolescence and young adulthood.

I had a run of about five years without many symptoms at all in my late 20’s, so didn’t believe there would be any kind of problem when I decided to have a child (famous last words!) and little William was born in September 2012.

Before I get to the nitty gritty bits, I should really give you the following information. As I was starting to get a grip on my own condition, the recovery stories that helped me the most were the ones where the true horror of the condition was explained in a lot of detail. The more severe the OCD symptoms in the story, the more amazing I found the recovery, and the more I started to believe that my own was possible. So that’s the approach I’m going to take now when sharing my own story, in the hope it helps others in the same way. I’m not going to hold anything back.  If you are thinking, “Good grief! I can’t think of anything worse than reading al that!”, fair dos. I understand that, please feel very free to skip those bits.

 

Motherhood and the onset of Perinatal OCD

 

Something’s not quite right

 

September 2012 saw me heading to hospital to have my little one. It wasn’t a great labour (this is putting it politely), things got complicated and I returned home pretty shaken and the pretty much the polar opposite to those rosy-cheeked, cooing mothers you see skipping out of the maternity ward show in the media - yes that’s right, you know that ones!

 

A couple of days after returning home, I started to feel very low; I was tearful and felt an ever-growing sense of unease. Initially I thought the decline in my well-being might be due to the labour - I just couldn’t get going, and resting was not a peaceful experience because I was starting to get some very upsetting thoughts about something bad happening to William. I was totally preoccupied with the fact that, being so tiny and vulnerable, he was very prone to becoming ill – and dying - and I was determined not to let that happen. I know these thoughts and fears are usual for new parents but there was something about the intensity and the frequency of the thoughts that made those first couple of days as a mother completely terrifying.

 

Over the next few days and weeks my thinking became more and more irrational and my compulsions increasingly far- fetched. I’d need a full novel to describe exactly what I did during that time to try to keep William safe, but since we don’t have that kind of time (and I’m not sure I’d want to rehash ALL of it) I’ll explain a few...

- I dealt with my fears about harm coming to William, by constantly checking on him. I set alarms throughout the night so that I could get up to check he was still breathing and this behaviour escalated quickly into me being unable to leave his side.

- I started to wonder about the safety of everyday household objects. What were they made of? Were they safe? Were they letting out toxic gasses? Would they poison William? Would they hurt him? Would I wake up and find him in bed stiff and not breathing? If items didn’t pass a thorough investigation they got put in the front garden, and as my fears grew so did the pile. The links behind the objects and harm they could cause grew more and more tenuous, but they still had to go!

- One of the more painful parts for me at the time was this fear that my beautiful cat, Archer (quite literally my best friend) was going to sit on William during the night and suffocate him. This, out of all the things going on at the time, caused me the most heartbreak, as it involved two of the things I loved the most – my baby and my furry pal. To stop this disaster happening, I took to barricading the bedroom door at night. At first, I used one item, then two… then three…. The objects I used got heavier and bulkier, they were piled and interlocked in ways designed to better stop the opening of the door by my adored domestic tabby (who in case you were wondering was devoid of both super-size and super-strength).  

 

On a side note, strangely enough, it never dawned on me that barricading the door in this way would make it very difficult for me to get both myself and William out of the bedroom and to safety in the case of a fire. Sodding OCD - which I now know it was, I didn’t at the time.

 

I can now see that every fear I had, is a fear that lots of parents have. Worrying about Archer suffocating William. Worrying that harm would come to a vulnerable newborn and feeling ultra-protective. Was I the only one who had these fears? No, of course I wasn’t, nor was I the first who had a condition that took these fears to the extreme – but sadly, I didn’t know that at the time. 

 

Another downside to this all happening, was what wasn’t happening too. As well as being absolutely exhausting, these behaviours meant that my selfcare activities had plummeted to zero - things were not going too well.  

 

Did I recognise my symptoms as OCD? A bit. I wasn’t really ‘with it’ enough to think about it properly, but I did suspect that some of my actions were down to OCD. I was back checking the knobs on the cooker, the heating, the windows - all my usual haunts - with an intensity unbeknown to me prior to becoming a mum, so yes, I did recognise some of it. I didn’t think, at that point, that it needed attention. I promised myself and Pete that I would go to the GP when I had recovered from the birth a bit and that was that. I just wanted to rest and regain my energy. I should probably admit here that I was also desperately hoping that if I ignored what was happening, it would all just go away on it’s own (I really want to put an eye-rolling emoji in here!).

 

This method of unhelpful thinking and pretending things weren’t as bad as they were, was giving a massive push up the ‘attractiveness scale’ by a midwife who came to see me. I should explain this a little first… During a particularly bad bout of anxiety and a panic attack that had lasted hours, I rang my midwife team to tell them that I thought I wasn’t very well and that I might have post-natal depression (it was postnatal depression because that was the only illness I knew mothers got when they’d just given birth). That very afternoon, they arranged for a midwife specialising in mental health to visit. A fantastically speedy service, however… I was told that if they suspected I had post-natal depression, that my son would be immediately placed on the at-risk register. I’ve since been told this was policy in 2012 and at the time it scared the life out of me. In my anxiety-addled mind, this information confirmed my worry that I’d lose William if I was honest about my fears. I wasn’t offered any support or any support information. There was no signposting for services or conversations about how getting extra support would be beneficial to me.  received the warning loud and clear, and it ‘worked’, because from that moment on I played down my symptoms and I stopped talking to anyone medical about my mental health.

 

 

The intensification of symptoms

Very quickly, my harm fears grew beyond the realms of inanimate objects and cats and started to include people. I became worried that someone ‘out there’ might hurt William, and like all my other symptoms it grew. Within a few of days that unknown person out there, that dangerous person, who posed risks and wasn’t to be trusted received an identity and entered the house. That person became me.

 

Now to anyone who doesn’t have experience of OCD this seems like a very dramatic and somewhat, er… inventive jump to make (it’s why it’s so important we are all aware of the way the condition works,) but I’m getting ahead of myself and all you need to know for now is that I now believed that my son was no longer safe around me, and this is how it started…

 

I was sitting on the sofa in my living room, watching my mother-in-law giving William a hug and I thought to myself ‘What’s stopping me getting up, taking him off of her, and throwing him against the wall?’. Just like that. It came from nowhere. I also felt at one point like I was actually going to do it (I’ll talk about this again a little later under the aptly named ‘urges’ section), and pretty much from that moment on, my world fell apart.

 

I had no idea that this was textbook Postnatal OCD - I hadn’t even heard of it. I believed this harm thought indicated intent and I entered into a huge loop of blind panic. I stopped eating and sleeping, I couldn’t keep anything down. I wore the same thing for days on end. I struggled to stand up properly - it made me feel too exposed - and took to hugging my legs to my chest. I communicated only when I had to and sank back into a world where I was literally frozen with terror. This is NOT hyperbole. 

 

And sadly again, just like the checks and the ridding the house of ‘toxic objects’ – my symptoms grew. Every second of every day became filled with the most horrendous visions of me harming my son. I avoided being with him at all costs and the only way I could be in the same room was if someone else, someone physically stronger than me, was in between us -  just in case I lost control.

 

The best way I can try to explain this obsession was that if you freeze-framed me as I carried out my daily activities - at ANY point of the day or night - I could point to every object… literally anything around me in that picture, and tell you how I was terrified that I could use it to hurt my son. I would also be able to tell you what the aftermath looked like (I’m sorry I know this is a lot to digest) and the newspaper headlines that accompanied my incarceration. I would also, sit through hours upon hours’ worth of thoughts and mental movies about how my husband would be affected, what it would do to my mum knowing that her daughter was a murderer and her grandson no more. All the things William would have missed out on because his life had been cut so tragically short by his evil mother was something I tortured myself with a lot. THIS is the reason people say OCD is a disease that tortures (and why I get the urge to yell at people when they spread misconception).

 

Just a quick note here about family and friends because you must be wondering. My rather amazing husband, did of course notice that something wasn’t right, and I did try to tell him a little about what was going on but I couldn’t tell him all of it.  He was exhausted from looking after our newborn only completely alone, was worried sick about me, and was happy to continue to hide behind the ‘difficult labour’ excuse. I became a master illusionist. I very rarely saw my friends or family (as I was ‘still recovering from the birth’) but when I did, I put on an Oscar-winning performance until they left. I was too terrified to admit the extent of my thoughts to anyone, including myself.   

 

I know we’re in full flow here, but I want to insert a mini-story into my story here.

It’s all about urges.

That word still had the power to make me feel very uneasy and sent the hairs on the back of my neck straight up but talk about it I must!  This is another bit of my experience that I’ve never spoken openly about before. Hang on…. urges, urges, urges, urges (always time for a bit of exposure!) I touched on this a little at the start on this piece when I explained that I sometimes felt like I was going to actually harm my son and just want to explain it properly because I know I’m not only one who has dealt with, or is dealing with, this. I read about it all the time but very rarely see it discussed openly – I understand why, but I want to break the mould here.

 

Right, here I go.

 

When I was at my worst, I found my thoughts absolutely devastating. But the thing that pushed me way beyond any coping strategy were harm urges. When I mentioned this to my therapist she said that I probably wasn’t having urges and that the feeling was probably adrenalin and anxiety from the thoughts causing me to misread my bodily sensations. I knew this could happen and at the time totally understood the point she was making. I also agreed with it because the alternative for me was unthinkable, but I knew that wasn’t what was happening to me - I was having harm urges and they made me feel like a monster. In my mind, urges were unforgivable. I could just about convince myself that thoughts weren’t an indication of intent but there was no way I could be convinced that that the urges I felt were anything other than a sure-fire sign of impending harm.

 

I’m going to jump a little to the future here, to a time when I’d learnt about OCD and was reading everything I could about it because I appreciate this bit may be very hard to read, very triggering and potentially worrying for anyone who knows me personally. Thanks to being introduced to a truly fabulous book called ‘Break Free from OCD: Overcoming Obsessive Compulsive Disorder with CBT’ I learnt that urges, or impulses, are just the same as thoughts.  They’re random, loads of people have the urge to jump in front of a train when on the platform, sometimes it’s even funny as we joke about how we get an unbelievable urge to press a big red button that says ‘don’t press’ on it. We’re all human, we all get urges, many of them the types of brief, flitting urges that we wouldn’t dream of discussing with others. But again, just like taboo thoughts, taboo urges are just random. It’s just the brain firing off a load of possible options. Since I’ve spoken to close family and friends about my own experiences loads of people have told about their weird urges. And being a new parent, guess what common thoughts and urges are? That’s right, those surrounding harm coming to children. The difference between me and them? I have OCD which meant I misinterpreted the random urge as a risk. I believed it indicated intent. I kept bringing on the urge so I could examine it and find out 100% that I didn’t want to harm my son. So there it is, I’ve said it. OCD includes urges too. Urges, urges, urges, urges, urges, urges… and back to my original post to a time before I’d learnt anything about Perinatal OCD.

 

Crisis and Suicide

Another area I’ve not always felt comfortable talking about is suicide. The word alone has terrified me in the past, but I’ve realised that unless we talk about it a lot, things won’t get better. It’s become one of my main aims to raise awareness of suicide and to try to make it a part of everyday conversation. So here I go…

 

Thanks to unending harm images and constantly looping harm urges, it wasn’t very long until I was in full crisis mode and during this time I began weighing up my options for the future. Through the OCD fog my two main options became either leaving my family or ending my own life. I wanted more than anything for my son to be safe, I didn’t want to cause my family suffering and I couldn’t bear the pain any longer.

 

I began to whole-heartedly believed that my family would be much better off without me and I was willing to do whatever it took to secure my family’s future -  I wasn’t prepared to be a drain on their already thinning resources. I never got to the point of planning my suicide, nor did I want to leave my family, but it’s important for me to acknowledge that I had sunk to the point where I no longer wanted to live and the thought that if I didn’t get better I could at least end my own suffering was something that offered some relief when I was really hurting. Thankfully, thankfully, it didn’t get to this point because as a last desperate attempt, I visited my GP.

 

Letting it all out

I remember waiting in the waiting room as if my life was over, and I should also mention here that I’d already said goodbye to my husband and son before this appointment, fulling believing it was the last time I’d see them. There was no doubt in my mind that I was heading straight under lock and key - I didn’t care which particular institution. It will tell you something about the state I was in that I actually took this happening as a preferred outcome to returning home and something of a relief. 

 

As soon as my name was called I wandered into the room in a daze and told my Dr something along the lines of– ‘I’m worried I’m going to hurt my baby. I keep thinking about it. You need to take me away from him. I’m a risk to him’ As a little light relief in a really difficult part of the story I should tell you that my DR and I still talk about that day together, both of us amazed that I’ve come so far since then. But back to then…

 

Thankfully, having been graced with my company (read irrational thoughts and fears) a decade earlier, my GP recognised my symptoms as anxiety. I didn’t believe him, it was going to take more than that to convince me I wasn’t a danger to my son, but so desperate was I to make the feelings go away, that I agreed to take medication. I was prescribed Citalopram with a small prescription of Diazepam to calm me down and give me some much-needed respite until the anti-depressant kicked in.

 

I lost about a week to catching up on sleep and recovered enough to begin interacting with William. We had some lovely moments, but, as always, I was usually on the other side of the room. Despite my medication starting to kick in, I still couldn’t quite bring myself to accept it was anxiety and that I wasn’t really a danger to him. My intrusive harm thoughts were still very strong, and they were getting worse. The medication stopped the severity of my panic but didn’t do much to stop the underlying cause.

 

My husband had to extend his paternity leave and when he went back to work, my mum came around to be with me and William. This went on for weeks, but gradually, I started to notice a shift. By taking small (at times minuscule) baby steps, I started to be able to be left alone with my little one. I needed to carry out lots of safety behaviours for this to happen. If I knew I was going to be alone with William I had to lock the windows and make someone hide the key just in case I threw him out. I had to remove the knives and electric cables from the house just in case I used them as a weapon to hurt him. I couldn’t carry him anywhere near the top of the stairs in case I threw him down, the hammer under the sink burnt holes into my psyche and needed to be taken away.

 

As the weeks turned into months, I started to be able to manage unaccompanied trips around the block with William. Going outside was especially challenging as it bought with it a whole new world of possible harm objects and potential ‘danger zones’. I was never able to travel from A to B because I’d need to avoid hazards or certain areas in which I believed there to be more of a ‘risk’. I could never stand near the curb when waiting to cross the road on the curb of a street in case I threw him into oncoming traffic. He had to be buckled into his pram and never held in my arms – I believed it was safer that way. I always turned the pram sideways at a road and put the break on and whilst this is sensible road safety, this wasn’t why I was doing it. For me it was to make it harder to push the pram into the road, it was a safety behaviour that served to make me feel more and more like I was a risk to him.

 

Every single behaviour I carried out had one aim. It was to lessen the likelihood that I would hurt him and was designed to buy me more time should I have decided to do it. Another way of looking at it is that I became totally obsessed with protecting him which is what all good mothers do for their children. Oh, to have known then what I know now.

So in short, even though I looked to the outside world like I was doing my better, I still had huge controls over my actions. And would only go through certain actions if I had satisfied a huge checklist. 

 

Self-diagnosis

The turning point for me took place three very long months after having William. I was lying in bed one evening desperate for some relief from my thoughts, and an idea popped into my head. I wondered if there was the smallest chance that these thoughts could have anything to do with OCD. I was pretty sure I was grasping at straws, but I put the phrase ‘OCD and fear of harming son’ into a Google search and a whole world of stories just like mine came up. I read through as many as I could find and spent the night in tears of relief that I wasn’t a child-killing monster after all.

 

It was the first time in the months since William had been born that I started to believe I might be ill rather than dangerous.  

 

OCD, as it loves to do, worked pretty hard to keep me down for the first 18 months of my son’s life. Every time I thought things were looking up, I’d relapse - twice straight back to crisis point. There were triggers everywhere. I heard a story about a woman hurting her child on the news, and it sent me straight back to what felt like square one.

 

Up until this point, the only treatment I’d received was medication and whenever I tried to lower my dose or wean off the tablets, I hit rock bottom again, so when it became clear that I needed a little extra help I self-referred to CBT. Again, my own research was what informed me that I should have CBT, not a single member of medical staff had mentioned it up to that point. I approached my assessment with mounting anxiety, there was still a part of me that believed if I talked about my fears, that I would lose Will.

 

Starting therapy

After being assessed as suitable for CBT, I had twenty weeks of high-intensity therapy with a fantastic therapist and slowly began to see small glimmers of recovery. I’ll get on to what I did in therapy in a minute, but you do need to know that in the months following finishing my first set of CBT therapy, I sadly had to say goodbye to my mum, my dad and my best friend; my dad had a heart attack after a long battle with Parkinson’s Disease and Dementia, and my mum and lovely boy Archer lost their battles with cancer - I know, you seriously couldn’t make this sh*t up! (I’m sorry about the swearing, I find it - and I hope understandably - very difficult to talk about this sequence of events without a fair amount of rage.)

 

Until people have been in the position of watching someone they love fade away, they can never truly understand what it’s like and needless to say going through it three times in the space of eight months caused me to relapse with such severity that I was re-assessed and send for another set of therapy straight away. I couldn’t access the therapy, I was grieving too much so we put it on hold for a few months and during this time, I got caught up in a really awful cycle; my OCD was off the scale. Having lost so many loved ones already, I became convinced, yet again, that William was going to die. Every symptom I had the first time around returned with a renewed force. The condition became so all-consuming that I couldn’t grieve properly, and grief, in turn, was a huge obstacle to me accessing therapy and making my OCD more manageable. I had entered into a vicious cycle that would eventually see me hit what was for me my absolute rock bottom.  

 

A few months of just hanging on and going through the motions later it became clear I needed help with my OCD in order to then be able to grieve, I was stuck.

 

CBT round two

I returned for another twenty sessions of CBT which with, breaks, holidays and weeks between session took 11 months.  It was during this time that not only did I start to gain a little of me back but, I began to uncover some new me and much, much later on started to feel like a mother. I know it must seem very strange that I started my recovery in such earnest in the midst of such heartbreak and grief, but I honestly believe that the loss gave me the motivation to continue. My son needed me more than ever and having learnt how quickly things can change and how life can suddenly change beyond all recognition I had a new found want, no need, to live my life.  A life away from the clutched of OCD.

 

 

Exposure Response Prevention

In total, I was in therapy for just over two years (this includes both sets of CBT and the gap in-between (I’ll merge them into one here for ease of description). And boy did I work hard! Before I even began to address my OCD using exposure and response therapy, I had to learn how to identify negative thinking styles, and then to challenge them once I’d found them. I worked on my self-esteem which up to that point had been battered. And once I was strong enough, I started working on the exposures which saw me facing my fears in a myriad of challenging, horrendous and - with the luxury of feeling much better now and being able to look back with some amusement – the absolutely ridiculous! I spent so long going up and down escalators between the top floors of department stores that it’s a wonder security didn’t come over to investigate me. I spent so long holding William on bridges that it’s a wonder a concerned passer by didn’t come to my aid. Every situation I had had harm images and urges in had time spent in.

 

It took roughly four months of cbt to be able to hold a knife when I was in the same house as William. This gradually built up to the point where I could start using knives in the same room. Every week I build on the exposure.

Because I was prone to a real increase in violent harm based intrusive thoughts when depressed and not taking care of myself, I had to deliberately not wash or change out of my pyjamas, or eat breakfast or do anything that made me feel more human before practising the exposures. I went to one session in pyjamas I’d been wearing for two days. I had to run on the spot until I was exhausted, and deliberately breath with shallow breaths to try to replicate the feelings of intense anxiety and then practise my exposures. This was terrifying, and I felt truly awful, but it was essential to allow me to learn to practise the skill of pulling it back once a decline in mental wellbeing had started.  

 

This is the first time I’ve told anyone apart from my husband all this, it’s very freeing.

 

As I began to feel better, my well-being and health became the centre of everything. If self care and my skills at dealing with ocd are muscles to be practised then mine was going to be bursting!

 

Self-care

I write about my self-care choices and my recovery all the time on my website and on my social media accounts, so I won’t go into a huge amount of detail here, I really wanted this piece to highlight the fight involved in Perinatal OCD and for that in tern to help spread awareness and to help others to realise they are not alone. But I will sum up some of the main bits I did here.

I made the choice to stay on medication for a while. I had previously kept trying to wean myself off of them, I was having a few problems with side effects and I’d read a few articles about taking medication that frightened me. But enough was enough, they were helping so I stopped trying to stop taking them. For me it was citalopram, 15mg (dose which helped yet stopped severe side effects – zombie like. I had diazepam for emergencies. 

 

I began to do little things for me. I started exercising, not running – it gave me too long alone with my thoughts - but Zumba and fun dance classes.

Self-esteem – one of the best thing I ever did was work on this – it was shattered. I saw my friends more, I got out more. I spent time in the sun, I started to take supplements. I continued with my CBT homework and designed and carried out my own exposures. I ensured I got a decent amount of sleep. I learned everything I could about OCD and mindfulness and introduced the latter into my daily routine. I learnt about the way my own condition worked and began to recognise the thoughts for what they were, just a random brain doing random things. I’d spent my life up to that point trying to keep people safe through varying degrees of irrational behaviour, it started to make sense to me that maternal ocd, whilst absolutely horrible, was just a branch of this. I was checking myself to make sure my son would be safe… it’s along the same lines of checking oven knobs so that my family wouldn’t die overnight in a fire. I can see that now.

 

Having only told a couple of people about my experiences with ocd I gradually built to opened up to anyone and everyone, writing this is the most open I’ve ever been about it. Listing it like this makes it sound quick and easy but it wasn’t. but the good things about it was that the recovery took places in small manageable steps… and just like my decline had been journey through ever decreasing circles, my recovery became the opposite. As soon as I achieved something, it gave me the confidence to try something else. As soon as I conquered one fear it made me feel better about myself. As I learnt more and more about ocd, the more I learnt how to be compassionate to myself and in turn take care of me. My world started to slowly get bigger and bigger and my view of myself became more and more positive and kind.

 

One of the things that helped the most has been creating a character to help me visualise my OCD. This is the Olivia from my website Taming Olivia.  I won’t go into that now; all the information is on my blog but it’s a concept that has its roots in Acceptance and Commitment Therapy and has changed my life completely.

 

I also need to mention social media here. Thanks to social media I was introduced to the OCD community. A community made up of some of the strongest, kindest, most compassionate people you could meet. It helped me to know that I wasn’t alone and that I could get better. Checking out groups, pages and profiles of people who had OCD, and had similar stories to my own, was life changing! A quick note here that I also found it triggering at times, so I got into the habit of questioning everything I read with the ‘Is it worth it?’ question at the forefront of my thinking. Will this help me? Will this inform me and provide me with things I can use to get me better? All important stuff. Just reading about the difficult times is great for helping us feel less alone but we really need to put our focus on practical recovery.

 

Okay, I’m going to stop there.

 

To the people I know I’m still me – just grown a lot more, and finally have a direction for that fighting spirit 😊  

 

I hope this has helped

 

Catherine xx

 

 

Here's me messing about instead of showing my serious blogger face for a photoshoot! ;-) 

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