I’ve been meaning to blog about my PTSD treatment for a while, I think I was waiting until it was over, but now seems to be as good a time as any. I know that in a few months, or next year, or 10 years, I’ll look back at this, and will think very differently. I know that I think very differently now than I did last month, or 6 months ago, or a year ago, or more. My response to the disease isn’t static, as the disease isn’t static – it morphs, focusing on different mental & physiological symptoms sometimes as changeable as the weather. But, this is my response, now.
[I am calling it a disease because that is what it feels like to me. The language I use may not be appropriate to your experience of PTSD, and may even be medically incorrect. But this is my personal account. To the same end, these comments can only apply to me & my experience of what I have; you may identify with some, or none. I am not intending to talk on behalf of all PTSD sufferers, just for myself].
My PTSD was caused by a rape which happened 6 years ago. I initially sought counselling from a women’s rape crisis network, which was one to one and then an ‘ending’ course which was a small group. This ended at around the year anniversary and I went travelling to a Thai detox which was incredibly emotional and cathartic. I thought I was ‘better’ and had learned how to ‘cope’. My panic attacks were less frequent and I stopped taking the anti-depressants. I took another job and was doing well at it. The 2nd anniversary passed without major incident, as did the 3rd.
By the 4th anniversary I was working 12-14 hour days, 7 days a week over an extended period and I fell to pieces; I had a total breakdown. Now, I think anyone working under those kind of conditions might be susceptible to breakdown, regardless of whether they had a barely-controlled underlying PTSD. But putting myself under that level of stress exacerbated what I had been keeping a lid on and ignoring. When I look back, the ‘without major incident’ passing of the previous two years hadn’t been that at all, I just hadn’t faced the truth that panic attacks at the thought of leaving the flat were part of something that meant I wasn’t better, that moving house 6 or 7 times in 3 years meant I just didn’t feel safe anywhere, that cutting off ties with my family because I couldn’t bear them knowing meant I wasn’t at ease with my own truth and didn’t want to confront it in those I loved. Looking back, now, I think that breakdown two years ago and the help I’ve got since then as a result was possibly actually a life saver. Although at the time, it almost meant the end of my life.
Initially I went back to the same counselling I had gratefully received the first time around. Different issues were raised, and I felt that I’d moved into a place where I was more able to address what needed addressing. It was followed with another ending group programme; again I started to feel that I was getting more out of it, assimilating more of the techniques proposed for keeping a lid on the panic, for dealing, for coping.
But when that ended I was very fearful of not having a counselling support. From some of the materials that had been covered in the ending sessions, I’d become aware of EMDR as a potential treatment. The reading I did on it seemed to suggest that it offered the promise of cure rather than just coping. Much of the reading seemed to suggest that this cure could happen within in as little as 8 weeks. Suddenly I wondered, where had the last 4 years gone? Why had no-one before said there was a cure for PTSD? I’d never had a diagnosis but I knew it was what I had… I found a local practitioner and was almost decided to just throw my own money at the problem when I had a lightbulb moment and remembered my health insurance as part of my work benefits package. I wondered if they covered mental illness as well as the physical. They did.
Jumping through the required hoops to get the ok from the private insurer was a really terrible process and experience – if you’ve ever had to sign on and figure out the hoops to jump through to get your JSA (& I have), it’s similarly painful, not great for someone who’s fragile in the head. Whilst I know I’m really privileged and lucky to have had the private option available, it is not a 5* experience that people would probably think. Finally, though, I was allowed to be assessed and then allowed to have treatment (although only a few sessions were approved each time, which has led to a regular fear that I will be cut-off. They have now cut me off saying long-term ailments are not covered and they won’t fund me after the end of June; I hope to be better by then…).
My diagnosis was severe PTSD (they have a points system to determine severe, moderate, mild) with very high levels of disassociation and chronic (long-term) depression. My psychiatrist is one of the leading trauma specialists and says that I had symptoms similar to what she would expect from someone who had been living in a warzone for several years. She put some of this down to experiences prior to the rape, but apportioned much of the impact to the lessons my brain had learnt to ‘cope.’ She is disparaging of talking therapies – they may help you ‘feel’ better temporarily but the brain has to relearn reality after trauma and it can’t do that by talking. Think is only part of it – feel, sense, taste, smell, how your body responds, everything must be rewired.
When you have PTSD your ‘window of tolerance’ is much narrower than the normal person’s. If a normal (forgive the use of the word please) person is under stress they will usually be at the peak of their window of tolerance. Sometimes, if someone jumps out behind them they might jump and feel unsettled. When a normal person is at their bottom of their window of tolerance, they’ll feel exhausted, wiped out, they’ll probably plomp themselves down on the sofa, maybe have a duvet day. The thing is, with PTSD the window of tolerance is much smaller – so what seems like a ‘normal’ amount of stress can be debilitating. The constant feeling of panic, the actual panic – these states are part of hyper-arousal and outside the ‘normal’ window. What I hadn’t understood before I saw my psych was hypo-arousal – but when she explained it to me, it made so much sense. I’d thought my chronic tiredness was just a feature of my depression, but it’s actually also a part of PTSD. It’s the embodiment of the freeze response, hiding from the world, not partaking, not being. And generally, following a period of hyper-arousal you will drop suddenly into hypo. Reclaiming your space in the narrow window of tolerance isn’t easy.
I wanted to start EMDR right away. This was now March last year (2013). I was going to be well and free of PTSD forever by the summer, ideally by my 40th birthday which was in May. I was frustrated because my psych wanted to go slow and she was insisting that I went on anti-depressants before we started and eventually I agreed. (I was resistant because I just didn’t like the side-effects and my memory of them was such that I didn’t think they did much good. They probably weren’t the right ones). Again, lucky me being private, she recommended duloxetine which is a newer anti-d and an SRNI, supposedly fewer side effects. It gave me horrible head sweats but I definitely felt less depressed. Then I switched to mirtazapine but whilst I could sleep on it, it made me into a waking zombie for the time I wasn’t actually sleeping. Third time lucky I am on escitalopram which is the posh, new version of citalopram – a purer version which is said to not have the side effects that the older drug has. She has been choosing anti-depressants which are specifically good for PTSD rather than the more common ones that GPs prescribe. And thankfully I have found a lovely GP at my practice who is happy to prescribe them for me under her advice. Like I said, I know I’m lucky.
So, we didn’t start EMDR straight away. We did a lot of physical grounding techniques. It surprised me but we didn’t need to talk about the rape at all; instead we talked about how things felt in the body, how I could regulate my body, how I could stay in the present and start to recognise in my body that the past was in the past.
I pushed to start EMDR and we did start it with a test trauma, something that wasn’t connected to the trauma we were going to try to resolve, but which had upset me. I couldn’t go through with it. It was too frightening to do even that. And I realised why she had refused initially to do the EMDR straight away, and also now I realise that she made us do the test run as she knew I wasn’t ready but I needed to know it too.
Throughout last summer we continued with grounding techniques, safe places and then lifeline integration. This was working through moments that I remembered from birth through to arriving at the session, one moment for every year of life. Initially I thought I would never remember something from every year, but the process was really effective in helping to bring me back to myself, to realise everything that had happened to bring me to this moment, and I wasn’t defined by that one night. It was also very exhausting (you try living 40 years 3 times in a 1 hour session, including being born!) but worthwhile.
And before we started on EMDR we did a lifeline integration of the actual night. The few days before, the detail (in as much as I remember it which is very fuzzy) and the few days and weeks after. Needless to say, that was also not a stroll in the park but again the impact was to enable me to fast forward through the detail, not get too stuck, get to a point of safety.
We started EMDR in the sessions before Christmas, and have been continuing this year. That’s about 5 months, and she thinks I’ve another 2 to go. It’s not 8 sessions. Apparently NICE basically recommend EMDR for PTSD but say it should be 8-10 sessions. My psych says this is based on simple PTSD from a traumatic event like a car crash. Not to say that car crash PTSD might be complex and require several months of EMDR either, but the NICE guidelines err on the side of less. My psych has steadfastly refused to indicate how long it would take from the beginning, it’s really a how long is a piece of string type question (and only now, 13 months later has given me the not-guaranteed promise of June).
EMDR involves making the left brain and the right brain start to connect with each other again. The problem with PTSD is that the fear that takes hold cannot be processed logically and so it takes over. EMDR tries to rebuild those connections so that when the reason for fear happens (the ‘trigger’), the brain knows that is just a trigger and you don’t need to go back to that place. I think of it as brain re-wiring with a bit of de-sensitisation therapy thrown in on the side (just to be sure, like…, endless repetition of re-living in detail never before realised…). To get the left brain / right brain reconnecting you either have to follow the therapist’s hand as it’s waved left to right and back again in front of your face. Or you hold electrical buzzer things in your hands and they buzz left right, left right, left right. I prefer the latter, with the following the eyes thing I am so focused on not losing her hand that I stop focusing on what I’m supposed to be focusing on (the trauma) and get upset with myself for ‘doing it wrong.’
There’s a protocol to follow at the start of every session. You have to visualise a scene that most comes to mind. How does it make you feel, where do you feel it in your body, what’s the emotion that comes to mind. On a scale, how horrible is it? What’s the opposite of the emotion, on a scale, how true do you think that is? And then you begin, the buzzers start buzzing or the hand starts moving. You have to listen to the body, let the feelings move around, see the pictures that come to mind. And when you’re done, you do it again. And again. And again, and again and again. We’ve now moved to 1.5 hour sessions so there is time to do 7-8 sessions of EMDR followed by safe place meditation so that I’m not a total absolute wreck and can at least get home.
On an EMDR night you are not allowed any alcohol or sleeping tablets or anything that might stop your brain from ‘doing the work’ and processing. For the same reason you’re not allowed to talk about it, or write about it in a diary (or blog) for at least 24 hours after. If you try to verbalise what happened, you start to create a conscious script of what happened, whereas what you are trying to do is get to the subconscious as it’s the subconscious which is what needs re-wiring.
It’s hell. I mean, it’s so counter-intuitive – you are willingly walking into a place week after week after week and consensually allowing yourself to be re-traumatised time and again by what has caused you the trauma and panic attacks and made you into a different person that you were B-T (before trauma – I actually use the term before rape and after rape in my head to describe the different me’s). (My brother (bless him) actually told me at my last family visit that I was doing it to myself because I was choosing to go to get treatment…) And just like the trauma didn’t just happen in those moments, but lived with you, so does the re-traumatising not just take place for the time you are in the psych’s office. You get home, you’re shattered, in shock, you curl up, you don’t want to sleep because you know what’s waiting for you is intense night terrors (because your brain is ‘doing the work’; I hate that phrase now), but you’re exhausted and so you sleep, and then you wake and then you doze and the nightmares are sometimes so vivid, sometimes so blurred, sometimes just frightening. It lasts several nights, you get a bit better the couple of nights before the next visit, and then it starts all over again. The day after you’re still in shock, you didn’t sleep much, your body wants to stay in hypo. I’m lucky, I get to do my psych visits on a Friday night. It’s meant I don’t do much socially on a weekend (and definitely not on a Friday) and I don’t get much done at the weekend – but it means I’ve managed to vaguely hold down a job whilst I undergo the treatment (and the job which meant I had access to the treatment). Full-time work plus EMDR is generally not recommended but who has that luxury unless they can get signed off for a very lengthy period of time?
But it’s working. The 6th anniversary just passed. Last year, just as the year before, the anniversary caused a mini-breakdown and I was off work. Usually I would work myself into a state by mid February, at least 6 or more weeks in advance. This year I didn’t even book the day as holiday. I didn’t make it to the conference I’d been hoping to go to next day, the adrenalin not quite seeing me through, but I bounced back. In fact, when I saw my psychiatrist the day after she did another test on me, and this time I’d halved my point-score and was now at moderate. And this was the day after the anniversary. I like to think that makes me in reality a mild. The end feels in sight. Yes, in the sessions since then, I have still become a frightened ball of tears (one day I will learn and remember not to wear eye makeup) , and I am remembering new things, tastes, sensations. I now know the point at which I thought I would die. With EMDR I am starting to piece together the jigsaw puzzle of what happened through my inebriated (drugged?) state, slipping in and out of consciousness. The body doesn’t lie and I’m starting to see that some parts of what I’d thought had happened just hadn’t. The process is creating a real truth which I think is also helping me to come to terms with it; not knowing had meant I filled the gaps with what might’ve happened, now I’m starting to get more clarity.
EMDR won’t be a cure. The only cure would be it not having happened (and there isn’t a time machine invented yet) or not remembering it at all (and I don’t think a lobotomy is really what I want for my life), but I do think through this process I am finding a way to eventually not be traumatised by what happened, to widening my window of tolerance so that it’s more akin to what is considered ‘normal’ and not need to feel like I’m just ‘coping’ but instead can think about living.
EMDR is hell. The counter-intuitive process requires you to be getting better before you can start because you can’t be re-traumatised if you can’t keep yourself safe afterwards. I can’t stress how much I hate it. But it’s my lifeline to the future.
Like Winston Churchill said, if you’re going through hell, keep going. Got to get out the other side. Eventually.