rTMS for Anorexia Nervosa: My Experience (Part 2 – Making tough decisions)

If you need to catch up or refresh your memory you can read Part One here.

In part two of this series of blogs I will be talking about actually getting into the trial and what was going through my mind during what turned out to be quite a long process. I do this partly for selfish reasons – I find writing cathartic, it helps me to make sense of my experiences and quiet my racing mind.

I hope that it might give researchers or anyone working or living with someone with Anorexia or any Eating Disorder, an insight into some of the thoughts that might be going through our minds when we start, or even just consider entering ANY treatment.

Finally I want people weighing up treatment options to know it is OK, in fact it’s normal to have mixed opinions, to feel pulled in different directions and to not only have doubts but to talk about them.

Enrolling in a Clinical Trial

Enrolling in the clinical trial first started with working out if I was eligible to take part in the first place. Research trials often have to have strict criteria otherwise results can be easily skewed. For the TIARA study I had to fill out a number of assessment forms, not unlike the ones you are given entering any mental health service.

There were a lot of questionnaires about my Anorexia, other health conditions and my history of service use as well as the usual demographic questions. On top of this, because part of the study included a number of MRI scans, I had to do a questionnaire to make sure it was safe for me to have the scans (after all it’s a bloody massive magnet so you really want to make sure there isn’t even the smallest fragment of metal in your body).

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MRIs – big scary magnet machines that are surprisingly easy to fall asleep in

My God it’s like dealing with Vogons sometimes and I ended up having to go through the whole process twice in the end to find the absolute exact piece of information needed which ended up being exactly what we’d expected all along anyway. Oh and I paid for the privilege of finding this one piece of information about my own body, fabulous.

Sorry for the (admittedly ever present sarcasm) but when you’re a health tech geek and you know personal Electronic Health Records could be amazing and save so much stress and time it can be a tad frustrating.

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Ok maybe the Vogon reference is a bit much but it’s certainly not a process I wish to repeat any time soon

Thankfully I was eventually given full medical clearance and we were off.

Pre-Treatment Concerns and Musings

Having spent six months attempting to get into the trial and banging my head against various bureaucratic walls along the way I hadn’t really let myself get excited or believe that it would actually happen. At several points I seriously contemplated giving up trying but was spurred on by the knowledge that it was the only way to try this treatment. Or any treatment for that matter as, bizarrely, after being discharged from services I’d been promised that, should I get into the trial, I would be given several outpatient sessions to support me – which didn’t actually materialise until after the trial had ended.

All of a sudden I had less than two weeks until my start date which would be a full on day of assessments, an MRI and my first session of rTMS. The new regime, going from being mostly sedentary for almost a year and hiding from the world – to commuting again every day and the energy it would use up was daunting.

I will hold my hands up to being a pretty damn anxious, highly strung and controlled person. I like to take my time to think about things before rushing in and this was something that it felt like I needed way more time to properly process before I could start. But I pushed myself out of my comfort zone because it felt “now or never” (it actually wasn’t, I could have pushed the start date back to January but after waiting so long I didn’t feel I could any longer) but that’s how much brain works, and I use the term “works” loosely.

I also figured I couldn’t possibly comprehend what I was about to undergo as it was completely unlike anything I had ever experienced before. I had watched as many videos as possible, read information pages, first person accounts.

As Ready As I Could Be

I had a LOT of conflicting thoughts, especially in the last few days before treatment started as is shown by several lengthy journal entries which allowed me to get down some of my fears and hopes.

My biggest fears were as paradoxical as my illness. I was terrified the treatment (and therefore another course of action, some hope, getting some form of routine back, being back “out in the world”) wouldn’t work.

I was equally terrified it would work and my Anorexia would be cured.

Because as horrendous and destructive as this disease is it feels safe, especially when my world hasn’t stopped shaking in some time and I feel like I am continually losing my footing. It is an insidious and disturbing constant in my life and I find it very hard to discern where I end and it begins. Truth be told I’m not exactly sure who I am without it and to face losing it – or at least to begin actively engaging in something that could result in it’s loss – was not easy to deal with.

Cue minor existential crisis

This part, typed into my phone while chain smoking and shivering in the cold, the night before the trial was due to start, stands out in particular:

I’m being handed an incredible opportunity by being able to take part in this trial. Without this study if I wanted this treatment it would cost me up to £10,000 or something ridiculous like that. Not an option when I haven’t been out of my overdraft in seven years. This is my only chance. I’m just so terrified of me (or my Anorexia, whichever one of us it is) sabotaging this. I know I am still reeling from being discharged against my will from mental health services not long ago and finding my feet on my own. Everything is so messed up at the moment too, is this really the time for this fight? I know I’ve been fighting recovery and in perpetual relapse mode. I don’t know if this treatment can work if I don’t want it to. And if that’s the case surely I shouldn’t be so selfish and stop this now, I’ll only screw up their results and then this treatment won’t get approval and people that actually deserve this treatment won’t get it..

If I put my psychology hat on it’s as clear as day looking back – I can see the major catastrophising for a start (I realise objectively obviously I’m not so important that a whole treatment could be made or broken on the results of one participant alone), a lot of black and white thinking (now or never) and a lot of guilt, shame – that I had this opportunity, whether or not I was “worthy” of it.

Of course now looking back I can see objectively that this is classic me behaviour when entering treatment and it’s played out many times before but as ever, it can be bloody difficult to see the woods for the trees when it comes to your own mental health.

When you share a body with this particular disorder for half a lifetime it knows your every weak spot and it does not hesitate to twist the knife when it sees an opportunity.

I had concerns too about how I would manage such a dramatic shift in my daily routine. I was lucky in that the trial was only 1 or 2 trains and only 90 minutes or so door which meant I only had to deal with a maximum of 4 a day (not bad for me!) and my Disabled Rail Card made costs much more manageable. However I still needed to be in London every week day for 18 sessions and an extra day for the final assessments and MRI. A few years ago that would have been nothing for me, I would have laughed at the ease when I was working full time, travelling in peak hours, commuting 4 hours a day on top of volunteering and being a carer. However a year out of work and mostly being told (and often made) to not “over-do it” my stamina has diminished considerably and even a trip a week into London can require days of recovery.

I was very aware that my devious disorder could easily use this as a perfect opportunity to ramp up it’s behaviours and pull my strings like a puppet. I would have opportunity, certainly, to over exercise and reduce my intake. My brain went back and forth trying to work out if my intentions were good, or at the very least “good enough” to do the trial.

In the end I decided to take the risk but make sure that I had back up in the form of peer support, my partner and family as well as calls with my lovely GP. I’m still not sure how well I did on this front, I know I pushed limits at point, tested waters I shouldn’t but overall I managed.

In part three: The part you’re all actually interested in – the treatment itself! Including the procedure itself, the idiosyncrasies and particulars of the trial and a few ridiculous pictures including my brain selfie.

rTMS for Anorexia Nervosa: My Experience (Part 1: What on Earth am I doing to myself?)

During the last part of 2016 I took part in a clinical trial of rTMS for Anorexia Nervosa. Repetitive Trans Magnetic Stimulation is a process used to stimulate certain regions of the brain and has so far shown promising results in both Depression and Anxiety and now has NICE approval for these conditions. The trial I took part in was run by Kings College London and called the TIARA Study (Transcranial magnetic stimulation and Imaging in AnoRexia NervosA).

If you would like to find out more about Anorexia, this particular piece of research, and see the actual procedure being undertaken this is a video produced by the team I worked with:

Brain stimulation may reduce symptoms in Anorexia

— I will also state now to avoid any confusion, as this is a double blind experiment I have no idea whether I was actually receiving the treatment or the placebo and will find out in March when I will post a follow up blog. In the meantime I will be using the word “treatment” regardless–

I want to talk about this for several reasons.

Firstly this is a new and emerging treatment and the RCT (Randomised Control Trial, the Gold Standard in scientific research) I was part of is I believe (at the time of posting) the biggest and most comprehensive ever undertaken of its kind so from a purely academic viewpoint I (and hopefully some of you) find it an interesting experience.

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Generic Stock Image of Science Man Doing Science Things

Secondly I want to talk about why I went through with this course of action which some might find extreme (I was acutely aware that I was consenting to something being done that could actively change my brain structure which is a lot to wrap your head around, no pun intended). Also why I ended up on this journey and what the trial and the treatment actually entailed so others who may be considering or undergoing rTMS are well informed as I personally couldn’t find many first person experiences before I started (although do look at the Reddit r/rTMS community for a fair few posts relating to Anxiety, Depression and the procedure itself).

When I started writing this blog I had hoped to fit it nicely into one single piece but as I soon realised there was quite a lot of content which fell into obvious sub categories and so this will be the first of a few blogs.

This first blog will focus on making to decision to enroll in a clinical trial for rTMS because it was a very lengthy decision and process and then I will go on to more about what the treatment actually entailed.

I will link through to other articles where I can and give more information at the bottom if necessary but do feel free to ask comments below.

Making the decision to try rTMS

Unfortunately I’ve been ill for a very long time now, in fact it’s almost 14 years (half my life) since I first received a diagnosis of Anorexia Nervosa. As much as I try and be an open book when it comes to the majority of my mental health issues Anorexia has always been something I have felt deeply uncomfortable discussing. Part of this comes from embarrassment as I feel like a painful stereotype; white, middle class, female, high achieving, perfectionist. I tick a lot of boxes.

And as someone who considers themselves a feminist it is difficult to reconcile what I say and feel about other women to the brutal and inhumane torture and taunting I subject myself and my body to, it makes me feel like a fraud although I know objectively this is not an uncommon feeling. I also feel it’s something still often seen as a vain condition that smacks of privilege (the amount of times I’ve had the idea of children in Africa starving thrown in my face as though I didn’t already know or feel guilty enough already). And as much as people say things like “well you don’t look Depressed”, for example, I don’t think any other mental health condition leads so frequently to people looking you up and down and making a snap judgment on whether you are actually ill enough to qualify for the diagnosis in their eyes.

Top tip: not everyone with Anorexia is skin and bones or wheelchair bound and frankly our society is so effed when it comes to female beauty standards I am regularly complimented on my appearance despite being dangerously underweight and seriously ill. Please don’t forget: Anorexia Nervosa has the highest mortality rate of any mental illness.

However especially over the last 18 months I have started talking more about this particular condition, in part because I didn’t have a choice; my supposedly secretive coping mechanism, my invisible illness was now in fact highly visible and undeniable.

Then there is a little part of me that does it because quite frankly I don’t have the energy to care so much about what people think. As my therapist once said to me, “don’t be alone with shame”, if I keep letting it fester it just feeds the disorder.

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I am highly treatment resistant which probably stems from a number of things, most namely the fact I have a number of co-morbidities such as Depression, OCD and Anxiety which can all feed off and into my Anorexia.Add to that a lot of turmoil in recent years and you have a big problem. I have spent the majority of the last 14 years of my life, since diagnosis, in and out of treatment. Somehow (and this always seems to shock people who know the breadth and depth of my illness) I have always managed to worm my way out of hospital admissions but I have seen just about every outpatient professional under the sun and tried over 20 medications, multiple types of therapy, mindfulness, peer support, yoga, tai chi, acupuncture..the list feels endless. Although I have learned something new, something about myself or found a previously unknown skill or tool from every intervention I have tried I am still ill. In fact this past 12 months has seen me reach and breach my previous rock bottom and left me absolutely desperate.

So desperation is obviously, on it’s own, a bad starting point when attempting to make a major decision about one’s health but I want to stress that this is not a decision I undertook lightly by any stretch of the imagination.

I have been keenly following news of TMS in the mental health community for several years now as it has been shown to have promising results in Depression and Anxiety. I looked into it but realised that, as at the time it was not approved by NICE (it now is for some conditions but not Eating Disorders although hopefully this will change if the evidence base is positive), it would be prohibitively expensive. I also tried to get onto several earlier clinical trials but didn’t meet the stringent criteria.

Finally, through Beat’s fantastic research participation page I found the TIARA study and then started on the process of being assessed for eligibility.

When I first started seriously considering trying rTMS I was under the care of a Community Eating Disorder team and I spent a long time discussing with both my therapist and psychiatrist, what doing the treatment would mean and they helped me work through some of the decision making process. In the end I decided that it was ultimately worth trying as I was making some progress in treatment but it was slow and not being reflected in my weight or physical health.

Unfortunately by the time I got into the trial and the start date approached I had been discharged from services as mentioned in my previous blog post and so I found myself in the somewhat daunting position of starting the trial without my usual professional back up to guide me through what would be quite an intense three weeks of 18 sessions at The Institute of Psychiatry, Psychology and Neuroscience.

 

In part two: The unexpectedly long and arduous process of enrolling in a clinical trial including such rants as “why is it so difficult to get hold of your own medical records” and “I wish my brain could deal with things logically instead of throwing a massive hissy fit”.

 

What a year of unemployment has done to my mental health

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It has been almost a year now since I found myself unemployed and unable to work due to illness. A lot has happened in that time, my world has been turned on it’s head and I have been left feeling emotionally bruised and battered. I’m not sure I can say with honesty that I recognise the person I see in the mirror all that much these days.

When my job ended (one month and one day before Christmas, a blow that felt particularly callous) I said I had chosen to leave for health reasons. This was not the case, in fact I was made redundant without any severance pay as the beautiful, brave social enterprise I worked for was  dismantled around me and then closed down.

However at the time I wasn’t able to say that, it wasn’t until months later in February I was able to tell people I had not left voluntarily. A hard thing to keep to oneself especially when you’ve spent over a decade in therapy learning and being encouraged to reach out for support when you need it-and I did need support badly. Even now I can’t really go into details. What I can say is that in the run up to the end the company had been whittled down to just myself and my boss and we worked ourselves to the bone under unbearable pressure to try and save what he had built, the literally award winning work we did supporting people with mental health problems.

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A beautiful but bittersweet night at the Tech4Good Awards 2015 knowing it would be the last award we would ever win

Slipping and then free falling down the rabbit hole

I had already begun deteriorating earlier in the year as the pressure mounted which manifested in deepening anxiety, depression and as my Anorexia worsened I did literally begin to work myself to not much more than bones.

When the job ended I was devastated but I also saw it as a rare opportunity while I had the safety net of my parents roof over my head, to “work on myself”, “devote myself to recovery” and “give myself a break for the first time in years”. Noble goals.

I think the biggest thing I have learnt about myself this year is that I am naive and I have definitely learnt that the hard and painful way.

I naively thought I had lost enough and things were as bad as they were going to get. After all the previous year I had been forced to move out of the lovely little flat I rented with my partner, back in with my family due to a torturous neighbour situation which ended in police intervention. I had lost my home and independence, now my job, income and health. It couldn’t get worse right? Fool.

In the immediate aftermath of the job loss there was a genuine grief, not just for what I had lost but for my colleagues too, the business itself, the way of life which was difficult but something I relished. Commuting daily into London, helping people, travelling all over the country..

I thought that some time off (planning to get back to work in the new year) would give me perspective but instead I fell into the oldest trap my mental illness lays, I fell too deep into my own head. Without structure or an incentive to fuel myself the Anorexia did not waver, instead it grew and I shrunk. I chased a number, a grotesque and arbitrary figure that has been stuck in my head for over 12 years and I didn’t just reach it I went lower and it terrified me but I could not stop even when my own heart was threatening to quit on me.

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This, if you can believe it, is the more “discreet” ECG which I wore for a week at one point 

It terrified the people around me too. When I’m ill it feels like I’m under water, I can’t concentrate properly on what people are saying because everything sounds distorted and I feel a strange numbness – only reinforced by being so cold I am often physically numbed. Yet it still feels like a needle being stuck into your heart when friends see you and burst into tears, or when you realise your boyfriend is scared of holding you too tight and breaking you. I could see objectively so clearly the absolute destruction my eating disorder was doing but it still felt like the only sane reaction to my insane brain in my suddenly upside down, stripped back, broken world. Suddenly I found my whole life given over to battling the illness, believe me it didn’t happen like it does in films with a spiritual retreat and sudden Eureka moment but with brute force. At one point I was having five appointments a week – group therapy, individual therapy, check ins with the GP, blood tests and ECGs. I saw psychologists, psychiatrists, dietitians, nurses, you name it, I tried it. I was asked on multiple occasions by clinicians if I thought I needed to go into hospital. A stupid question to ask a perfectionist, people pleasing Anorexic. Especially when consenting meant a bed in the “nearest” unit which is 400 miles from home (a shocking situation in itself). I couldn’t leave my partner, my family and friends, my whole support network and go to another country for months on end – how could I say yes to that regardless of how ill or far gone even I could see I was?

In January 2014 I did something I never usually do; I made a resolution, that I would not put myself through the hell of another winter with Anorexia. If you’ve had this condition you know winter is torture, your whole body feels cold every minute of every day, unable to generate any of it’s own heat you sit on radiators until your clothes melt without you noticing, Raynaud’s becomes so bad you wash your hands until water you don’t realise is scalding your skin. It is a season of wearing three layers of leggings and tights under your trousers and still shivering. In January 2015 I did not make that same resolution but I still hoped there would not be another. In January 2016 I made no such resolution, there seemed no point.

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By far the worst year ever for Raynaud’s – I’ve literally only had about two weeks respite even with a good summer

I ended up in A&E until 3am because of re-feeding syndrome, I self harmed properly for the first time in six years, so much time down the drain in one motion. Suddenly I couldn’t deal with phone calls any more, I couldn’t deal with people or being outside if I didn’t have to, I was endlessly broke, my world shrunk to the four walls around me and bland, badly lit waiting rooms as I cancelled every plan I made and withdrew further and further. My only respite were the moments of happiness I had with my family and partner who have bent over backwards and broken themselves to fix me this past year. That and a wonderful group of people I met through group therapy who I have thankfully stayed in contact with and meet up with for peer support (which for us involves a lot of coffee and much needed ranting).

At some point I ended up applying for benefits, something I had pretty always managed to avoid. Despite being eligible in the past through pride I did not apply despite my Dad repeatedly pointing out he had paid taxes for over forty years so that if anyone, especially his own flesh and blood, needed support, it would be there. Seeing no other option I applied and jumped through the hoops, seemingly endless loops put in front of me by the DWP. There is a blog in the works about that experience.

Sometimes I find myself wondering if I can put a cost on the emotional pain, the stress and anxiety that they have put me through and if I did would it add up to more than the meager sum I receive in pounds sterling? I cannot count the number of panic attacks I have endured, the volume of tears of frustration spilt. As someone who is very ill the benefits system seems geared to heighten any pre-existing anxiety or paranoia you may already have. The threatening brown envelopes, arbitrary demands and the ever looming fear that your only means of survival could be stripped away at any point wears you down. In the three weeks that I waited for a face to face assessment I lost half the weight I had managed to gain in the previous six months and the assessment itself left me unable to leave the house for weeks and knocking back Valium just to get out of bed. In the latest saga I now owe £700 I most definitely do not have because of an admin error. This year has felt like one disaster after another.

Over the last few months the outside support has dried up and I am increasingly facing these endless hurdles I face with only my exhausted family to help. Group therapy ended, I saw that one coming at least and could prepare myself. Then I found out I was almost at my allocated number of therapy sessions. When I started with this service I was told I wouldn’t be discharged until my BMI reached a certain target which, although terrifying, was healthy, I was told therapy could be extended if necessary. It wasn’t. Despite my weight not changing and being dangerously low, sub-emaciated for over a year and still the weight where hospital had previously been recommended, despite behaviours popping up like a deadly game of whack-a-mole, despite my failing health and my desperate plea for help I was discharged back to my GP. Now I find myself with 10 minutes every few weeks if I can get an appointment. I have lost my outlet, my safe space and I have been discharged back to primary care sicker than when I entered services.

In a desperately cruel twist of fate just as my therapy was ending and I was trying to process that loss my partner’s grandfather passed away. Grief careered into our lives like a bulldozer with no one at the wheels, ripping through my partner and his family and all I could do was watch helplessly and try and do what I could to ease the raw pain. Futile. I told everyone involved in my care that I was deeply unsafe and at my most vulnerable, that I didn’t know how or why I was meant to cope with all this without help. I was told by clinicians I “would probably get worse after discharge” but “it’s okay, you can always be re-referred”. I’m not sure I would want to go back now though, it feels like that window has closed, I feel more damned to this disease than ever.

So here I find myself, a year on. I always used to half joke that if I ever stopped (running from education to one job after another, always commuting, travelling, rushing, trying to save the world) I wouldn’t know how to start back up. It’s not so funny now.

The much wished for, dreamed of recovery seems further away than ever, my weight at rock bottom, my health precarious and no light that I can see anywhere in this tunnel. Although I am told otherwise I feel useless and a burden. The system does a lot to back up your paranoia and to push your self esteem down further. The endless “scrounger” rhetoric gets through even the thickest skin. All the logic I have at my disposal, my knowledge that I am too ill to work, that I have worked, have contributed, always paid taxes, fizzles and disappears in the face of brown envelopes and the culture of fear the Department of Work and Pensions perpetuates.

I know I will get back on my feet, I am, despite all of this, one of the lucky ones as I have a family that supports me, a roof over my head, a partner, friends (those I haven’t managed to push away) including a wonderful group of girls I see most weeks for moral support. What is hard is not knowing when this will come, when life will start getting better. I feel like I haven’t been able to catch a break this year, positives slipping through my fingers like sand or just out of reach. If the word desperate has come up a lot in this post it’s because I am desperate, for change, for a glimmer of hope, for a break or turn of fortunes. I know I am not this shell of a person, I know I have so much to give and all I want is to go back to work and the real world and be well.

Update: Taking time out of employment

Over the last six months or so I have faced a perfect storm of stressful situations and knock backs that have had a pretty disastrous impact on both my mental and physical health. I have fought to stay in full time work for several months despite the protestations of friends, family, my GP and my mental health team. But if you know me you will know I am someone that will go out of my way to do what they’ve been told they probably can’t. It’s not something I wanted, to have to walk away, especially from something like Buddy which is such an incredible social business but I am grateful that the decision was finally taken out of my hands.

I am really sorry that over the last few months I have withdrawn a lot from the people that care about me. I still can’t talk about the nature of the stresses that have led to this relapse for various reasons, mostly that it’s not my story to tell. But needless to say the last 6 months have been incredibly stressful. If you have seen me in person you will know that I am very unwell as a consequence of what has been going on – If you haven’t seen me you may have picked up this from the few pictures of me I’ve posted (I desperately don’t want to trigger any of you and even I can see I look like a walking bag of bones right now).

I am lucky to have an incredible family, partner, friends and mental health team and GP. My family have banned me from seeking paid employment until the new year at the earliest and will support me in the meantime and my GP and team are closely monitoring my physical and mental health (3.5 hours of therapy a week, monthly GP and blood tests which may come to fortnightly blood tests if my health declines any further.

I will be doing some sessional work and blogging in the meantime as doing nothing is detrimental to my health too but I will be taking the next few months to try and rebuild my shattered body and mind, take up yoga and see my friends and family more – basically practising what I preach and doing some self care.

So essentially I am actually not completely devastated to be unemployed which is what I expected. Last night I slept for 12 straight hours which is the longest I have managed in months. I no longer have the stress of the job and after 6 years I am finally going to have a break longer than 2 weeks (yes the last time I had an actual relaxing break was 2009).

I am just sorry I couldn’t tell you all sooner, I’ve hated lying to you or dodging the truth hence withdrawing.

Particular and undying gratitude to my partner Ryan for his seemingly endless patience and love, to my brother James for getting angry with and for me, Amy-Louise Murray for trying to talk some sense into me when my brain has been less than rational and Kat Pugh and Kenny Johnston of CLASP for never giving up on me.

So there we have it. I’m free for sporadic bits of work like blogs and sessional work but otherwise I will be taking it a lot easier, which I’m sure a lot of you are pretty relieved about.

Coping with Traumatic Anniversaries

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This weekend marks seven years since I was involved in a particularly traumatic incident. I won’t say what happened, the cause of the trauma is irrelevant to this post, but it was something that went on to change me irrevocably.

Anniversaries of traumatic events are often painful years after any bruises or scars have faded. I must admit to being wildly optimistic and naive for the first few years, expecting it to get exponentially easier each time the date inevitably swings around again. However to my dismay I have learned it doesn’t work like that.

The first year was undoubtedly the worst. I had no point of reference, I had never experienced something so traumatic and had no idea what the anniversary of the date would hold or how I would react, I also had the date burned into my brain so I knew there was no way to trick myself and forget which I thought was an option as so many people told me to “leave the past where it belongs” and not to “be morbid and mark it” because they perceived that as unhealthy and wallowing. So I expected the worst case scenario, quite typical for someone with PTSD, and to be fair I wasn’t far off. I used the day itself to go back through some old diaries and mementoes from that time hoping to find some news clues or perhaps even some closure. This proved to be a mistake, I didn’t find doing this particular activity at all healing until several years later. But that’s me, always trying to run before I can walk. Hell I never expected to develop PTSD in the first place and somehow believed I could just “get over it”, that is wasn’t a “big deal” and move on unaffected.

As the years pass my trauma symptoms diminish but never truly go away. What was initially like an all consuming fire inside me lessened. In the immediate aftermath I was a wreck, I was convinced that my trauma was burned onto my forehead so that everyone could see, just by looking to me, what had happened. Thankfully the flashbacks waned until they were once every couple of months at most, not multiple times day and night. In fact there have been periods of whole months where I have not thought once about that day.

In more recent years I have at times completely forgotten that date, the one I thought would be forever etched in my memory, burned into my grey matter.

Some years I felt I had an obligation to mark the date, some years I have been more than happy to let it slip by with little or no recognition, in fact one year I didn’t remember until several weeks after the date.

This tricked me into believing that all was well and I was putting my past behind me, laying my demons to rest. Unfortunately as I know objectively, but can often forget, trauma doesn’t work like that.

This will be the seventh anniversary and in recent weeks, by total coincidence something was brought up in my group skills class that hit a very painful and well buried nerve that I thought was beyond reach. It sparked the biggest resurgence of PTSD symptoms I have had in years; multiple vivid flashbacks through the day, nightmares, increased hyper-vigilance, trouble getting to and staying asleep and some very physical reactions. For example I unfortunately and accidentally caught a glimpse on television of something that for me is a particularly strong trigger and immediately I was running to the bathroom throwing up bile and shaking like a leaf for the next hour.

This year the anniversary falls on a Sunday so for me this is a real opportunity for me to live by my words and have a bit of #SelfCareSunday. I tend to find either total distraction or total relaxation is the only way to go on the anniversaries and this year I have opted for the latter. My partner, who has stood by my side for the last five anniversaries is well versed in what not to say and how to support me.

So this is how I intend to spend the day:

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We’re planning on having a lazy day, not setting our alarms but letting my SAD light wake us up, staying in bed to read comics before watching films. I won’t want to leave the house which he understands so we will stay in and cook together. I have got a Moogle to make me smile, Dreamtime tea for the evening to keep me calm, my Buddy Box, a heatable Bagpuss , lots of loveliness from Lush and my ongoing game of Final Fantasy XII which Ryan and I have been playing. The day, I hope, will pass without incident.

So there we have my take on surviving traumatic holidays from a personal point of view, what I would recommend, if you are unlucky enough to be in  a similar situation is this:

  1. Let people know – it doesn’t have to be a public blog like this but I always think it’s important that someone close to you knows that there is a day approaching that may be difficult for you, that way if you do need any support it can be planned in advance, that way if you need it, it’s there.
  2. Go with your gut instinct – sometimes it’s totally okay to absolutely ignore the anniversary and sometimes you will feel like doing nothing more than hiding under the duvet with your phone switched off. Reacting to trauma is entirely unique to the individual and we often at a gut level know what we need even if we may struggle to express it verbally due to high levels of distress. If it’s a week day you may feel being at work or university and being distracted is better or you may want to take the day off to reflect or because you’re struggling in which case taking a day of annual leave is a good idea.
  3. Remember: This too shall pass. As I learnt it doesn’t get exponentially easier each year but it changes. Some years are better than others and there is no roadmap to healing from trauma or official “end date” as much as that would be helpful. All I know is that although this year has been bad I have had much better years in the past and I have faith there will be better days to come.

September Buddy Box Unboxing!

Buddy Box Image

Well I had a lovely surprise earlier this week when a mysterious package appeared on my doorstep – it turned out to be a Buddy Box from The Blurt Foundation sent by my dear friend Amy-Louise (she also has an awesome mental health blog you should check out). I’ve been having a pretty rough time of things lately and the day it arrived was especially bad but getting this actually did a lot to turn my day around.

I’ve been a massive fan of The Blurt Foundation for a long time, they are a great organisation dedicated to breaking down the stigma around mental health issues and I definitely found a kindred spirit in their CEO Jayne Hardy who is a fierce and dedicated campaigner. They recently started to do these Buddy Boxes which I think are a great way to show friends that you care for them. They’re designed to promote self care and I couldn’t wait to get my hands on one.

So here’s a quick unboxing blog to show you what I got and hopefully encourage some of you to get involved too!

The box itself

Buddy Box Image

The box itself is gorgeous (although the postman managed to bash mine a bit unforunately). I’ve noticed a lot of these box subscriptions lately (Nerd Block etc) and the boxes can be a bit bulky but this is shoebox sized and definitely something I’ll keep after using the contents.

Unboxing

Open Buddy Box

Inside everything is beautifully wrapped and like I mentioned the box is the perfect size so the contents didn’t get knocked and it didn’t seem disappointedly empty like some sub boxes I’ve seen.

The important bit – the contents!

September Buddy Box Contents

Sorry if this picture is a bit small but essentially here’s what came inside the September Buddy Box:

  1. Postcards – The first thing you can see when you open the box is a couple of very sweet postcards from Blurt themselves which I thought was a really nice touch
  2. A notebook – I don’t know if it’s an anxious person thing but I’ve noticed a LOT of us have a bit of a stationary obsession so this is perfect – as much as I’m glued to my phone and technology in general I don’t think I’ll ever be able to give up paper diaries and notebooks and always have one on me. This one is definitely going to be going in my bag.
  3. A pen – Not just that but a very cool pen which I’m definitely going to double up as a bookmark. Also as it’s flat I think it may actually be easier for me to use when winter and my Raynaud’s really kick in.
  4. Soap mmmmm not just any boring soap but gorgeous smelly stuff from Gone Crabbing who are a family run organisation which is nice as I try my best to buy as much as I can from independent companies.
  5. Socks! I don’t know how they knew but my sock collection is fast depleting so these were very welcome – also they are probably the softest pair I own and very warm which is great for people like me who are secretly cold blooded lizards and therefore ALWAYS cold.

    Buddy Box Socks

  6. My favourite bit: craft stuffm  as some of you know I am massively into crafting, having found it a very therapeutic and rewarding activity. Cross stitching obscenities got me through 18 months of a job from hell and I also find that it’s a great distraction for me when I’m feeling anxious (and likely to pick my skin or hair) or feel strong self harm urges. This little craft kit is gorgeous and when I actually have the energy will be a little cactus to match the notebook.

So there you have it! Having received a box I will definitely be paying it forward 🙂

A little bit of me and Buddy in The Times

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I recently had the pleasure of being interviewed by Phil Robinson for a piece in The Times around mental health apps and my own experience of working for and using Buddy in my own treatment. Here is a short extract from the piece – you can find the full article linked to at the bottom of the post.

Phil Robinson,

I was staying at a five-star hotel in Greece when I broke down. I couldn’t move or speak; I wept for no reason. So I was flown home, diagnosed with depression and sent to a private psychiatric hospital, where therapists began rebuilding my mind.

For weeks, with groups of almost broken, funny, and desperate humans, I attempted to learn the tenets of cognitive behavioural therapy (CBT). I didn’t want to be stuck in a room with a bunch of people who had, like me, flunked life, but it saved me. Beyond anything that was said in that room, I was sure that I wasn’t alone.

For people suffering from depression today, access to therapy is no longer a foregone conclusion. But whatever your problem — paranoia, body dysmorphia, BPD, OCD, PTSD — there’s probably an app for it. And this month, the health and life sciences minister George Freeman launched a £650,000 innovation prize to promote the creation of a new generation of mental health software.

So far there are 26 apps (11 are free) recommended by the NHS as part of a drive to automate healthcare, relieve waiting lists for talking therapies and reduce the £100 billion that it spends on treating mental health patients every year.

One, called Buddy, has been used by 12 NHS trusts and has been used by more than 17,000 people. An SMS and browser-based diary and communication tool, it’s designed to be used in conjunction with seeing a therapist, says Kat Cormack, who is Client Director of Buddy but also uses it “in my own treatment”.

I get a daily text from Buddy,” she says. “‘Hi Kat, Buddy here, how are you doing? Rate your day from 1 to 5 and tell us how you feel!’” As well as rating her state of mind, she can add notes. “It’s connected to my clinician, so I can tell her things that I might not be able to say looking her in the eye. I can confess my darkest secrets.

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By analysing the data, a clinician can monitor a patient’s progress or use it to aid diagnosis. She cites a woman whose long-term depression was revealed to be hormonal after her Buddy data was found to correlate with information from another app tracking her menstrual cycle. “She changed her medication and is now free of depression for the first time in decades.” 

When I was being treated for depression in the Nineties, I saw my therapist once a week, my psychiatrist once a month. I can see that apps present an opportunity to collect evidence to hasten recovery, yet the ability of most apps to deliver a quality service to vulnerable people remains questionable.

Away from the NHS’s recommended apps page, there are thousands of apps dealing with every condition. In most cases their publishers are as obscure as the evidence of their clinical efficacy. At one end of the spectrum you have apps such as MoodKit, the product of the experience of two respected doctors; at the other you have apps such as Fukitol, which is named after a Robin Williams joke.

The industry is still in its infancy and evidence from clinical evaluation trials is scarce. However, in 2013, a study of Viary, a Swedish app for depression, found that 73.5 per cent of patients who used the app were no longer considered depressed after eight weeks and needed half as many therapy sessions as those who engaged in therapy without it.

The result offers a glimpse of why these apps have been seized on as the holy grail of mental healthcare: promoted as a form of triage, they enable health services to push users to take responsibility for themselves and to cut face-to-face therapy.

Cormack is aware that digital tools such as hers are used by people who are frantic for NHS counselling but have not received it.

 The waiting list for an assessment can be up to a year. That’s why people are using apps — they are either a stopgap when you are on a waiting list, or if the NHS has told you that you don’t meet their criteria. People get desperate. We are losing lots of low-cost counselling services because they can’t survive in this financial landscape

When I was at my lowest, between 1998 and 2002, it was always possible to see a counsellor at my local surgery. In 2015, a GP refers people like me to IAPT, an acronym for the suspiciously titled “Improving Access to Psychological Therapies”. It’s a stepped care program that begins with an assessment by phone from a “psychological wellbeing therapist”. Those assessed to have a condition that is interfering moderately with their lives are given a computerised CBT course to complete at home.

If this magic bullet fails, they are given self-help options, or signed up to a 100-person psychoeducation class (like speed awareness courses for people with depression). If you still stubbornly fail to regain your mojo, you can join a year-long waiting list for talking therapies, during which time you can use one of the many apps. The hope throughout this process is that patients simply disappear from the waiting lists as cured, or over the worst of it.

Therapy via healthcare app might seem like treatment purgatory, but anecdotal evidence from practitioners suggests that apps for depression and anxiety work particularly well with certain sectors of the population, such as the military and teenagers, who are notoriously reluctant to talk about emotions.

This is just an extract, the full piece on The Times website (subscription service).