rTMS for Anorexia Nervosa: The Results Are In

So here we are, a year on from my initial inquiries into the trial and it’s time to tell you the results. It’s been a long time coming.

If you’ve read the previous blogs you’ll know I’ve been very apprehensive about the results and this reveal. In the last blog I stated I thought and hoped I had been in the placebo group because (so far at least) I hadn’t seen or felt any noticeable improvement. I said I felt bruised from all the treatment doors and didn’t want to feel another thud against my face.

I’ve waited awhile to tell you all because I’ve needed time to process it myself. Regardless of result an answer meant finally getting some closure on the previous months but also held sway over what happened next. If it was placebo then I would now be allowed to go through the procedure again, this time for real which would mean making arrangements to fit another month of travel into my life. If it was real then I would have to decide if I wanted to look for treatment elsewhere, whether that meant grudgingly going back to my previous NHS Community Eating Disorder Team,  looking into third sector support or even going to my parents for help with a paid, private therapist.

Drum Roll Please….

So enough already, the results.

I opened the envelope, unfolded the paper and the results were there:

“Real Treatment”

So there we go, it was not, as I’d hoped, the placebo. I had received 17 sessions of actual Repetitive Trans-Cranial Magnetic Stimulation Therapy.

How Do I Feel Now I Know?

I’m feeling Okay about things now to be honest. Initially, yes, I was disappointed. I hadn’t been looking forward to going through the whole thing again but I didn’t and still don’t feel any different.

I’ve been told that you can still sometimes see signs of improvement in the six months after the treatment has ended so I guess there is a chance that something might shift. So far results seem to show that in people that do notice improvement it isn’t a massive thing, you never (and I never expected to) wake up “cured” or a thousand times better. But for some people it seems it does help to slightly shift, adjust, “rewire” almost, parts of the brain and can help pave a clearer path to recovery.

I’ll never know for sure why this seemingly hasn’t worked for me. It could be that I didn’t have enough sessions or a high enough dose, perhaps it only works for specific people, a sub-cohort of people with Anorexia we haven’t identified.

It might well be that my head, my life and my illness are too complex right now. Finding out a family member has Cancer is enough to throw anyone completely and I know my head has been in a very bad place for a very long time now.

Maybe it never stood a chance against my environment.

On taking part in a clinical trial

I will never regret my decision to take part in the trial. That it hasn’t worked is a shame for me personally but when you are part of a trial you are just one piece of a much bigger puzzle. The TIARA study I have been participating in sets out to be the biggest ever RCT of rTMS for Anorexia Nervosa and it feels good to have been part of something so big and groundbreaking.

My data and the data from other participants will be gathered and painstakingly picked over by some of the brightest minds in the country. The results will then be scrutinized by their peers across the world and released to the scientific community and wider world for further examination, discussion and replication.

Given that my condition, Anorexia, has the highest mortality rate of ANY mental illness I am grateful that I have had the opportunity to be part of the race to find better treatment and save lives. We know that 20% of people with Anorexia die prematurely. And even if it doesn’t kill us less than half of us will make a “full recovery”. The odds for Anorexia are worse than some forms of Cancer.

Despite this mental health still receives very little funding in terms of research which is vital if we want to develop new treatments and save lives. To not do so is (to put it bluntly) a seriously false economy when you take into account lost lives, earnings etc. In fact the whole of mental health research spend in the UK per year is just £115 million an average, 22x less than Cancer.

Part of my hope with this series of blogs has been to shine some light on mental health research and show you what it looks like to be a participant in a clinical trial and I hope it has at least been mildly interesting.

From here I’m not sure what I will do.

I am looking into a local charity which provides an Eating Disorder Support Group and I have been re-referred back to the NHS Community Eating Disorder Service (grudgingly but that is a story for another day).

Until then I battle on.

Thank you for reading my story.

Mental Health Research: More Information

If you’re interested in finding out more about mental health research or get involved check out organisations like MQ: Transforming Mental Health, The McPin Foundation and the brilliant blog Mental Elf.

Advertisements

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).

affinity-mri-closed-mri-scan

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.

vogon

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.

What a year of unemployment has done to my mental health

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.

Buddy App Digital Health Awards.jpg

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.

imag0904_1

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.

raynauds

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

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:

IMAG1271-01.jpeg

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.

A little bit of me and Buddy in The Times

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.

IMAG1101-01

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).

I’m trying to come to terms with Chronic Illness

We are lucky to live in a world where most conditions are treatable, and as many slogans go “beatable”. For many of us our experiences of illnesses have been followed by effective treatment leading to remission. If I have a cold or flu I know there are tablets I can take that will make it go away. If I break a bone I know a cast will help knit the bones back together and leave me, hopefully, with full function in that limb again. This is a model that certainly in the UK the NHS and ministers understand.

What then if your condition has a murkier prognosis? What if there is no cure or a high chance of repeated relapse? It’s not only then a struggle often for the treatment and management needed but also a huge philosophical concept to bend one’s head around. It’s also, I’ve found, a difficult one for friends and family because they can’t “fix” it and that hurts.

Many of you will be aware of the “spoonie movement” which was originally created for those with chronic physical health conditions, hence when I was always restrained in my use of the word and felt uncomfortable labelling myself as part of that community.

However my mind is changing on that front.

I have been ill for 20 of my 26 years on this planet, I have approximately 7 conditions and have had more treatment than most and yet here I am, still chronically ill.

My issues are around my mental health, although some conditions are now in remission I still struggle with Major Depressive Disorder, Anorexia Nervosa, Generalised Anxiety Disorder and Obsessive Compulsive Disorder.

Right now it’s Anorexia and Anxiety that are majorly kicking my ass (to use non medical parlance), I am currently in my third full round of treatment and admittedly it is much more intensive than I have experienced elsewhere (thanks postcode lottery) but so far it’s barely scratching the surface. I have been ill so long I don’t have a “before” to remember and strive for. In fact research suggests that if an Eating Disorder is present for seven years your prognosis is not good – so with 13 years under my belt I’m not feeling hopeful.

I spoke to an Eating Disorder consultant recently who reintroduced me to the term “SEED” or Severe and Enduring Eating Disorder. One of her patients was offended by this – “I don’t want to be a seed, I want to be a flower”. I think this is very powerful and says a lot about our chronic patients – we often feel like a burden and hopeless – something I myself experienced when my CAMHS team aged 17 told me they had “run out of options”. As chronic patients we are fully aware we are difficult and complex but please don’t throw up your hands and give up on us. And please, we’ve been living these conditions for a very long time so take us seriously.

This is also why I’m seeing a strong backlash in the mental health community against the “recovery” movement and also the government’s seeming need to define “recovery” as “in work”. Recovery is fabulous and we should strive for the best for our patients but let’s not give false hope. Some of us, may never recover. We may take medication for the rest of our lives. We may have to surf the waves of our illnesses ad nauseum for decades.

12 sessions won’t fix us.

Living with a chronic illness is bloody difficult to say the least, I would offer a day in my shoes but you would know you could take those shoes off at the end of the day. I can’t. There is no real comparison.

There are points we cope well, we say “f*** you” to our bodies and fight for what WE want, even though this often ends up in a body backlash (case in point I slept 19 hours after a 2 day trip to Manchester recently”). There are points when either through medication or the boom/bust cycle many of us experience we can function like “normal” human beings. And we rarely “look sick”. When you see us and tell us how “well” we look it’s probably the first time in awhile we’ve been able to leave the house. For more on this check out the brilliant But You Don’t Look Sick.

However there are points, and I’m sorry to say I’m here now, when we get desperate, when something snaps.

I feel lost and hopeless right now. I have had 10 years on and off of almost every therapy NICE approves, I’m 31 weeks into an experimental non NICE approved group therapy, I stopped counting when I tried the 20th medication, I’ve tried everything over the counter and even tried Acupuncture. I’ve tried to sign up to experimental treatment studies including TMS, I’ve taken meds that I shouldn’t due to contraindications or legal issues because anything is better than how this feels. Which of course leads to risky behaviours.

Some doctors are sympathetic (thankfully my current one is) and if you find a good GP cling on for dear life. A conversation with a previous GP went like this:

Me: Well if you won’t prescribe me benzos, I’ve tried every other med under the sun that I can, what am I meant to do to deal with my crippling anxiety while also working full time, commuting and trying desperately to keep a roof over my head?

GP: Just cope.

Chronic illnesses are sneaky too. I thought I had come to terms with what I had done to myself some time ago – more around my scars. Now though, age 26 I am beginning to experience more of the physical side effects and it’s currently having a very detrimental effect on my work and relationships with friends and family because I am not strong or well enough to do basic tasks that were once a piece of cake.

Currently I am struggling massively with fatigue, constant aches and pains and raging anxiety which means headaches, uncontrollable shaking, brain fog and many more very physical symptoms – bolstering my argument that this mental/physical health divide is bogus.

Having a chronic condition means redefining your “normal” and managing your expectations. Maybe once upon a time running 10k was an option, maybe today you should applaud yourself for just getting out of bed. It’s tough. I know, I have tried but when you have low self esteem it can be hard to see boiling a kettle as an achievement.

I don’t know much admittedly but I would recommend above all:

  1. Find a sympathetic GP and work with them to build an understanding health team around you
  2. Talk to your friends, don’t withdraw or cover up what’s happening – from my experience you will be surprised how many understand and will support you. Some won’t, some may withdraw, that will hurt but ultimately show you who your true friends are.
  3. Find your “tribe”. I’ve been running support communities, mostly around mental health for the last 13 years and they have not only changed but saved my life. Find people who understand and won’t judge and lean on them when you need them.