Dear Mr Prime Minister

Dear Mr Prime Minister,

Today, for the first time in my adult life, I voted in a UK General Election. I walked into that polling station seething from yet another pointless session at my local mental health centre. Neither I nor the consulting psychiatrist quite knew why I was there. She was replacing my previous consultant and this was an appointment scheduled by him some time ago; I was under the impression that today I would be beginning a much awaited course of OCD focused psychotherapy. Turns out that it was just a brief review session to see if I was getting on okay with my latest medication combo. The psychotherapy is, apparently, still pending. You see, despite being referred formally for specialised psychotherapy in March, I am yet to receive any confirmation from the designated psychotherapy team. Apparently they were supposed to have sent me a questionnaire weeks ago to kick things off. Nope. So I’m told to book another appointment for three months’ time, hopefully by then we will have heard back from the psych team. Yay.

To put this into a little bit of perspective.

I was first diagnosed with OCD over five years ago – shortly before we saw the dawn of the most recent incarnation of what one might call a government back in 2010. I was diagnosed in early spring, put on medication a week later and then, one month after beginning the meds, underwent a brief telephone assessment which, as far as I could tell, was designed to assess the likelihood of my committing suicide. With the suicide risk formally assessed, I was told I would be put on the waiting list to see a CBT therapist; I might have to wait a few months as there was a bit of a backlog, but I was on the list. A few months seemed liked a forever at that point in time but, I understood that when demand is high and funds are tight, waiting lists are inevitable. To be on the list, any list, was a relief.

It took eighteen months, and much chasing, before I was finally sitting in front of a CBT therapist. Turns out, my therapist didn’t really have what I would call a good grasp of Obsessive Compulsive Disorder. Or maybe he did, and I just didn’t get it. Either way, with his broader ‘let’s just try and make you less anxious’ approach, it wasn’t long before my confidence in the process started to wean. It evaporated completely the day that he said this:

“An HIV positive person could spit in your mouth and you would not catch HIV”.

Not helpful. At all. Firstly, I know this, this is not brand new information. Secondly, this does not ease the anxiety of an OCD freakout. Thirdly, how the hell is this supposed to help me walk to work without obsessing about every speck of reddish brown that happens to be on the floor? To be fair, he thought he was helping, but he wasn’t. In that single sentence I knew that he just did not understand and could not help me in the long term. The trust was gone. After a particularly emotive session which ended with my walking out long before my hour was up, we decided that I should see a different therapist.

After a year or so of yet more chasing, in July 2012 I was introduced to the next therapist. This person was fantastic, she had a clear treatment plan and set clear objectives that I would be expected to meet throughout the 12 weeks of treatment (one hour per week for 12 weeks was the standard at the time). There were a number of strategies that my therapist used that proved to be quite useful and, surprisingly, very good at challenging both the obsessions and the compulsions (Exposure Response Prevention, or ERP was particularly helpful). It was a difficult and emotional process but, by the time week 12 came around, I felt more positive about my life and my mind. OCD was still very much there but the sting of the freakouts did not cut quite as deep, and did not last as long. For me, this was amazing. Still, as I walked out of the final session there was a pang of sadness, a shadow of fear that somehow the OCD monster would creep back into the room. Unfortunately, without going to see someone privately (which I could not afford), I was pretty much out of options, nothing left but to go it alone, and hope for the best.

Two or so years later (June 2014) and I found myself at my local GP surgery, sobbing, terrified and begging for help. I didn’t want to be on the earth anymore, I couldn’t face the waking hours, I hated the thought of living with this thing for the rest of my life. I was making myself, and the people around me, miserable. My GP upped my OCD meds back up to the maximum dose (we had agreed that I was ready to move to a lower dose six months earlier) and signed me off work. She referred me to a local talk therapy service for CBT therapy and also fired off a request for advice from a consulting psychiatric team. They told the GP to put me on a new type of medication, in addition to the one I was on, a medication that was so strong that it would first require a kidney function test. This, without having even met me. They tell my GP that, if the new medication doesn’t work, she should write back and they’ll reconsider my options. I researched the drug online and also wrote to an expert in the area of OCD. Nothing I read suggested that this was a standard medication of choice for OCD, but rather a drug for Generalised Anxiety Disorder. The expert himself expressed surprise that I would be prescribed this drug. After much thought I decided against the blind prescription. My GP wrote back to the mental health team.

In August 2014 I started my second round of CBT therapy. In the first session I answered some questions about my general mental health and levels of anxiety and I also completed an OCD ‘test’ (i.e. to determine the severity of my own particular brand). After completing said test, the therapist confessed that he didn’t think he would be able to do much about my OCD as it was too severe and he didn’t think himself entirely qualified. So instead he suggested that we work on helping me feel less depressed. Needless to say, I wasn’t much impressed, given that the main reason I feel depressed is because of the OCD. But hey, the dude’s a pro, I will trust his professional judgement. Some weeks later and the words ‘bulimia’ and ‘body dysmorphia’ are peppering the air like tickertape; I must admit that I began to forget that the whole purpose of this treatment course was to help me deal with the OCD. Somehow, this had been swept to one side, in favour of discussions about food addiction and fat. By the end of the treatment (8 weeks initially, then increased to 10 for good behaviour – no, seriously), once again I found myself wondering why it was so difficult for me to speak to someone who actually had experience of treating someone with Obsessive Compulsive Disorder. Was this why I paid my taxes? To play musical chairs around the broken infrastructures of the NHS?

Early September 2014 and I go back to my GP to see about the referral to the psych team. She asked me again if I would consider taking the medication. I said no. She said she would see what was happening with the referral. I finally get a letter telling me that I would have an appointment in nine weeks’ time. Just nine weeks! Because, you know, nine weeks just fly the fuck by when you feel like you’re going crazy and you just want someone to help you. I attend the appointment and complete yet another anxiety themed questionnaire to assess my suicide risk. I am told that medication is the way forward at this point in time, but they’ll have to check with my doctor. Okay. They tell me that I will probably need to be referred for psychotherapy, but that they will have to talk to my CBT therapist first to get the okay from him to refer me; you know, the same CBT therapist who said he couldn’t help my OCD because it was too severe. Makes sense, right?

Long story short, it’s 7th May 2015 and I am STILL waiting to see a psychotherapist. Five years after my initial diagnosis. In that time I have been on the highest dose of medication for OCD; have swallowed approximately 6,000+ pills in a bid to stay this illness; I have completed Christ knows how many anxiety/suicide questionnaires; I have seen three CBT counsellors; I have been told off by a GP for wasting her time because I wasn’t suicidal; I have been signed off work for a total of five months; I have been told that I don’t understand my own illness by a mental health professional; I have been fobbed off time and time again; I have wanted to die.

I have wanted to die.

And I am in no way the only one. There are millions of us who are forced to live in this universe called Anxiety. Living in fear, all day, every damn day. Afraid to get out of bed, afraid to go to school, afraid to go to work, afraid to live their lives. Their fears are all-consuming, terrifying and real. They live in a world that stigmatises their reality, a world that struggles to comprehend mental illness for what it is – a 24 hr prison cell, a 24 hr tip-toe around the sleeping monster within. No breaks, no sleep, terror is hiding everywhere. For so many people in this country, it seems like there is no way out.

And that’s the kicker. That’s the thing that Cameron & Co. just don’t seem to have understood. Ever. The worst outcome of untreated mental illness is not ‘x number of hours lost in sickness absence per year’; or ‘sum x of UK taxpayers’ money spent on Statutory Sick Pay’ – or however else they choose to measure it. The worst outcome of an untreated mental illness is death. People die every day from a mental illness, from a disease of the mind. Is that really so difficult to understand? Hearts stop every day because their owners cannot live with their own minds. Life wasted, because somehow they got lost in a system that is itself the bloated product of profound mismanagement and a serious lack of organisation at the most local levels.

This is an organisation that has the very best of staff having to make do with the worst of foresight from one government after another. They are overworked and underpaid, underfunded and yet, somehow, also under resourced. Tell me again how this most recent government has given a damn about mental health? Tell me again how they’re going to do things differently next time? Only don’t tell me that the answer is in cutting funds, because anyone can see that any cut to funds at this point in time will result in more people like me, depressed, isolated and waiting five years (and counting) for help. The answer lies in changing outdated attitudes to mental health. It lies in seeing the NHS for what it once was and what it could be: our most vital asset. Save it, reform it, do not abandon it. To abandon it would be to abandon millions.

So, Mr Prime Minister, it’s up to you. Will you help me? Will you help the millions like me?

It’s in the jeans

At the moment I am sitting in a pair of jeans that I am pretty convinced could give me HIV. It’s a long and boring story but its main protagonists are: me, OCD, jeans, blood.

A few days ago, on my way to work, I happened to walk past some blood on the floor – now, I’m not sure if I actually stepped on it, but I walked pretty damn close anyway. So followed a day of feeling sick and contaminated all over. I kept myself to myself all day, and barely spoke to anyone. When I got home, I took off my jeans and put them by the washing machine (I decided that I didn’t have to throw them away because the jeans did not come into contact with aforementioned floor, of that I am certain as my jeans are not long enough. I did, however, throw away my trainers, trainers that are relatively new, because there is a chance they walked on some blood). I didn’t have to wash the jeans straight away because I have another pair of jeans that I could wear instead the next day – and they say that putting off the compulsion is a good idea or whatever.

I own, in total, two pairs of jeans that can be worn outside. Why only two? Well I just can’t be arsed to buy new clothes when the risk that I will have to throw them away runs so high. So, given that 50% of my denim property was waiting to be washed, yesterday I was left with no option but to wear pair no. 2., teaming with my current favourite jumper (a jumper that also happens to be fairly new). This jumper is nothing special but it is so unbelievably snug, it’s like a hug from myself to myself. I have even taken to wearing it around the house, it’s that cosy. So I was pretty happy yesterday when I left for work, clean jeans, nice jumper. No contamination, win!

After using a public toilet yesterday I went to wash my hands. I was feeling fairly okay, okay enough to not go down the extensive time consuming hand-washing route, but rather the normal, regular-person type of hand-washing. Just as I was rinsing away the soap from my hands, I felt a few droplets of water splash back from the sink basin. No problem, I will just wash them again. Then I spotted a tiny bit of what looked like blood on the side of the sink. It was the tinniest of amounts but it looked very much like blood to me. I tried hard to convince myself that it was make-up, or food or some speck of something else. But I am pretty sure that it was blood. So then starts the tidal wave. Along comes the old friend, hot lead, surging up the body like a sadistic cat, it alerts all of the senses, makes my skin feel like it’s burning. I try to assess where the specks of water actually fell, but the truth is I don’t know, so they might as well be all over my jumper. My jumper is effectively drenched in someone else’s blood. Someone who may, or may not have HIV. But for the sake of risk assessment, let’s just assume that they do. I am covered.

Long story short, I got home, had a shower, put the jumper in a plastic carrier bag to go in the bin. Jeans in the wash, just in case.

This morning, when I got up, I realised that I have no trousers to wear whatsoever. I am screwed. I have to choose between the pair no. 1 which are contaminated in my eyes because I was wearing them on the day that I may or may not have walked on a speck of blood in the street. Or I can wear pair no. 2 which are contaminated in my eyes because I was wearing them on the day that I may or may not have splashed myself with water that may or may not have come into contact with blood on the side of the sink. I decide that the risk is greater if I go with pair 2, so I decide to go with pair 1. In the panic and general self-loathing that ensues, I console myself with the knowledge that, at one point, I would have phoned in sick and not gone to work at all, rather than face the hell of wearing either pair of blood jeans. So at least that’s something. Er, yay….?

So, here I am, several hours into my day, I am wearing blood soaked jeans and everything is itching. Most of all my mind. I have popped one of the pills that I am to take when I am experiencing particularly high levels of anxiety (it’s one of the holy trinity of drugs that I am taking these days, it’s so much fun to be a walking pharmacy, pumping yourself full of drugs in the hope that one will fucking work). It won’t be long before I start to feel dopey and drowsy, before everything starts to feel a bit slow, and I start to edge towards feeling a little bit like a zombie. Which I guess is better than a hyena who can’t stop itching.

Mind Fever

I asked myself today which word I would use to describe OCD. For me, I think the word “fire” sums it up pretty nicely.

 Why fire? I don’t actually know.

 Perhaps it’s because fire is red and red is danger and red is blood and blood is HIV?

 Or, perhaps because water destroys fire and I seem to spend much of my life seeking water to douse myself in? I generally associate water with an impending calm that will happen for a few moments once I’ve scrubbed my skin clean. Maybe that is why I find the ocean to be so peaceful. There is something about being able to float on water, being able to say, ‘Here you go, sea, take me! Hold me for a while as I snooze under sunshine! Relax my body and cool down my brain a little minute, I want to float away from the shore and hear nothing but the swishing salt….’ I have mentioned in a previous post about default traffic light settings of OCD – during the more positive periods, my own OCD is usually at amber (more or less). When it’s burning hot, it’s at a constant red. There are the weeks where it can drift between the two, but it nearly always settles itself back to red….. Why am I telling you this when I’m supposed to be talking about the sea? Well, unfortunately, the sea can only be my respite when my default OCD setting is amber or, if I’m really lucky, green-amber (oh how I miss sweet green-amber!). But when the default setting is red, the sea is actually a big bath of germs. Bodies upon bodies bounding into the sea, complete with all of the bodily fluids that go with them – it’s all in there, in my mind. Which is such a shame because, as I say, there is something so peaceful about water.

 So back to the fire. Why fire? Perhaps because, at times of intense OCD freakouts (as I call them), it truly does feel as though my mind is on fire. In those moments I would swear blind that, if you were to stick a thermometer in my brain, it would tell you that my brain is, in fact, a livid volcano. That’s right, a volcano. And when it’s bubbling and brewing away, swelling with the panic, it almost feels as though my mind is too big for my head. There is just so much going on, so much activity, so much electricity fizzing away at my skull. Behind my eyes it’s a 70s disco ball of crazy – although minus the awesome flares and funky music (anyone for a song called Mind Fever….?).

As it turns out, perhaps I am not that far off the mark – in his book Brain Lock: Free Yourself From Obsessive Compulsive Behaviours, Dr Jeffrey M. Schwartz describes a research study wherein he compared the brain activity of someone with OCD with that of someone without OCD. Without going into too much detail (mainly because I am not a scientist and it took some effort for me to fully understand it myself), Schwartz explains that there is evidence to suggest that one of the differences between a non-OCD and an OCD brain is that the OCD brain demonstrates a kind of  chemical ‘overheating’:

“To help patients understand this chemical imbalance, we showed them pictures of their brains at work. During a study of brain energy activity in people with OCD, my colleague, Dr. Lew Baxter, and I took some high-tech pictures using positron emission tomography, or PET scanning…. The resulting pictures clearly indicated that in people with OCD, the use of energy is consistently higher than is normal in the orbital cortex— the underside of the front of the brain. Thus, the orbital cortex is, in essence, working overtime, literally heating up.”

Yep, apparently I’m just walking around with a burning brain – no wonder my mood seems to swing from being super excited and enthusiastic to lethargic and sleepy. No autumnally cosy glowing embers purring softly in the corner for me, oh no! I’ve got big fucking burning oak logs, and if you can occasionally throw some petrol in for good measure, all the better. And that’s just my brain.

 Just as soon as my brain is all ablaze, then it’s only a matter of time before my body follows suit. First of all, I will feel it in the centre of my torso, a whirlpool of lava that gets progressively louder until it is the only physical sensation that I can register at all. But, before long, the fire will throb through my belly, creeping up to my neck, dripping down to my thighs. This fire is cruel – your chest cavity no longer contains a set of carefully compacted organs; it contains a hot smoothie of mess, and it is beginning to shut down. I imagine blood cells running around screaming at one another: it’s just so fucking hot!! My lungs are screaming at my heart to slow down, my stomach is smacking the shit out of my lungs, telling them to shut the fuck up and start breathing, my mouth is so dry it is struggling to produce saliva at all, my face is flushed, my eyes are burning. My ribs feel like they are no longer made of chalky bone, but of piping hot iron, I am sure they will bend and twist if I should fall. My body is attacking me.

 Then my skin starts to itch. It’s like there is a substance, something, on my skin, spreading like ferocious little ants. The longer I wait, the larger the area covered by the ants. They get everywhere, behind my knees, into my belly button, onto my scalp, dancing their sadistic happy dance around my hair. And their little feet are hot – so fucking hot – that everything is itchy and burning. I scratch my hands, my arms, and I scratch my scalp. I want to jump into water, or bleach my skin, anything to stop the stampede of disease and itch and scratching that is happening all over my skin. I want to scratch my skin off, sand away the top layer to reveal the untouched, untainted, wonderfully sterile layer underneath. But, as luck would have it, I’m not a snake, and so I am stuck with the skin I have got. I wonder if my skin will ever get clean again – is there a substance on earth strong enough to stop this? I am just so fucking hot. If you could see how my skin feels, it would look red raw, lumpy and live – I swear it is live with the kind of heat that distorts light. I need to cool down, slow down, calm down. I want to throw myself head first into a tank of clean ice and fall asleep right there until it’s all over.

 When I was little, if I burned myself, my mother would put calamine lotion on my skin. That powdery milky substance was the most sacred of super remedies; a cool layer of creamy retro lotion that provided a brief but welcome distraction from the pain of a heat that was now out of control, a respite from the suffocating temperature of my skin. Ah, sweet calamine! – Wait, isn’t that a song? – How I loved you and your cold embrace! Passport to sleep and temporary peace, I salute you! In this the enlightened and modern age we have managed to split the atom, send human beings into space and develop a weapon so powerful that it can literally wipe out cities at a time: so tell me, why have they yet to discover a calamine lotion for the brain? Why is there no remedy for this shit? And why do so few people give a crap about finding one? Who gives a fuck about the universe when there is a universe in my own head that I can’t understand.

I have OCD, this is my blog.

Four and a half years ago, I was diagnosed with Obsessive Compulsive Disorder. It came as no surprise, I had been living with it since the age of nine. Sitting with a group of friends at a sleepover, my life changed forever. One of the girls noticed that she had cut her arm and it was bleeding. I went to help her clean it, before another one of the girls said, “no, don’t do that, that’s how you catch AIDS!”

AIDS?

I didn’t know much about AIDS but I knew it was a terrible disease and it would kill me if I caught it.

When my parents came to pick me up from my friend’s party, I sat in the back of the car silent, wondering how I was going to tell my parents that there was a chance I had caught AIDS. Guilt like I have never ever known, before or since. How could I tell them? What if they caught it too? I would be responsible for killing my own parents. I sat at the sink that weekend and scrubbed my hands, over and over. But no matter how hard I scrubbed them, they would not get clean, they just never felt clean. AIDS was now a part of my life, not in a real way, but in a way that was entirely in my own mind – I was terrified for my life, for my family’s life. I could not let this terrible disease get my family too. So I kept on scrubbing. In the coming months I would scrub my hands so much that it would hurt to hold a pencil at school, as the skin on my knuckles would crack and bleed. I had the hands of an old lady with a skin condition – at the age of nine. My childhood was gone.

That was twenty one years ago. I am no longer in contact with any of the children at that party, we drifted apart, as most children do. I wonder if the girl who made the comment can even remember that I exist. She probably doesn’t. But the innocently inaccurate and innocuous comment of a child was the trigger to the biggest fight of my life: OCD. Do I blame her? Of course not, she was a child, and she said something that she did not understand. But I cannot help but wonder how different my life would have been if I had not attended that sleepover. Perhaps I would have ended up with OCD anyway, perhaps I would have been an obsessive checker instead of an obsessive cleaner, obsessively checking instead of obsessively scrubbing myself. Really, what’s the difference? It’s no one’s fault.

So, after 17 years I found myself in a doctor’s surgery with my father’s partner. I listened, exhausted, as she explained what I had become: a shadow of myself who spent hours at a time in the bathroom, endless showering, endless hand scrubbing, endless runs of the washing machine, endless washing of clothes, endless list of strange behaviours that only the OCD-er or the people who know them, can recognise or understand. And that was the stuff she knew about. But with OCD, you are an iceberg – only ten per cent is above the surface, the remaining 90% is the terror beneath, the torture chamber of your own mind.

That was four years ago. In those four years I have been on continuous medication for OCD, and for the first three years I was on the maximum dose for the condition. I had twelve sessions of Cognitive Behavioural Therapy (CBT), which helped enormously (when I finally met a therapist who actually knew her stuff about OCD). I was gutted when the sessions came to an end, I was scared about what could happen and if I would go back to that person who thought that putting Dettol on her own skin was a perfectly reasonable thing to do (unsurprisingly, my skin burned as a result). But the therapist’s confidence in my progress meant that I could start to feel some kind of confidence about moving on alone. A year ago I asked my doctor if I could start to reduce the dosage of my OCD meds, which she agreed to do, providing that we would closely monitor my progress. A year later I found myself in the doctor’s surgery again; exhausted, hopeless and utterly depressed. I was permanently on the verge of tears and, once again, I felt like I was trapped in this endless and horrendous cycle of OCD.

I was signed off work and have been off work ever since. Being off work has helped enormously, if just because it has given me a chance to get used to being back on the maximum dose again. It’s given me a chance to sleep. It’s given me a chance to focus on myself and stop lying to myself that everything is ok, when it’s not. It’s given me the opportunity to start putting myself back together. It’s given me time to try and go back to the CBT steps that I learned two years ago and see if I can work out where I am going wrong, what I can do differently. It’s given me time to go back to the book that I believe really saved my life four years ago, Jeffrey Schwartz’s Brain Lock (I would encourage anyone with OCD to read this book). It has given me time. I have felt broken for so long, and it is giving me time to try and fix myself, one tiny step at a time. I am so grateful for this time.

I have a long way to go and I am nowhere near where I would like to be. A friend of mine suggested that I use this time to write. And that’s where this blog comes in. I hope it can shed some light on what it’s like to live with OCD, for myself and for anyone else who happens to read it. If it can help someone who lives with OCD feel a little less alone, then all the better. I have decided to just write, without re-reading and re-writing. So forgive me if the posts read as something disorganised and haphazard, but that’s my brain and that’s OCD. I am just going to write.