Last night I saw a tweet by @PositiveA4PTSD asking if
someone could respond to a post on their website someone’s experiences of
EMDR. I replied and said I would today
when I wasn’t so tired so here is the resultant reply that I promised. It’s rather long, so please forgive me.
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.
I hope you’ve found this a little bit helpful, sorry for the
length.
