Dear Mr Prime Minister

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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?

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Insanity – aka Shaun T is my kick!

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So, I have decided, after months of being fat, and being the biggest that I have been in my entire life, I need to start moving. One thing that has been an absolute constant this year has been the feeling of helplessness, of not being in control of anything. I have spent so long waiting for referrals, for appointments, for change to happen with the OCD that I have come to the conclusion that I am no longer in charge of my own existence. It’s really scary, and I feel like my ever increasing weight symbolises this more than anything. The less in control I have felt, the more I have locked myself away; the fatter I have become, the less I have moved; the more isolated I have become, the less I have felt able to face the gym. I tried attending a kickboxing class for a few weeks, but I felt so huge and self conscious that, after a while, I couldn’t face going. I tried going to the gym, and I was beginning to remember how much I used to love it, but – again – I just feel like such a fat fraud, I couldn’t lift my own body weight, I was just a mess. I am a mess. I miss being physically strong, fit and just okay with my body. It’s not solely about the weight, I miss being able to push my body to limits, to push my fitness and my strength; I miss the tightness of my body holding itself up with confidence, I miss being able to walk a little taller.

A few years ago I started Shaun T’s Insanity programme. I kept on it for about six or seven weeks but then, owing to recurring back problems at the time, I had to stop doing it. Whilst I never completed the full 9 week schedule, I have to say that the Insanity programme is by far the best thing I have ever done for my body. Before I started, even though I was quite fit, I had never been able to do a full push up – by the end of week 7 I was doing full push ups whilst travelling across the floor. Such is the power of Insanity – it pushes you to the absolute max and, hand on heart, I don’t think that there could possibly be, on this entire planet, a personal trainer as fantastic as Mr Shaun T. I remember when I first saw the infomercial, I was excited and afraid at the same time – Shaun T reminded me of an army drill sergeant that you see in the movies, he expected nothing short of hard work and litres of sweat. Inspired by the fact that the people in the video were actually sweating, I ordered my programme and waited with fear/excitement.

Once I started, I realised that Shaun T is actually incredibly motivating and inspiring. He really makes you believe you can do everything that he and his fitness friends are doing – “YOU CAN DO THE SAME THING WITH YOUR BODY!!” – it’s amazing stuff. Besides, he also seems to be just an all round awesome guy who ends up being your on screen training partner throughout the whole process. Even when I’m yelling at the TV screen, “YOU ARE OUT OF YOUR MIND, SHAUN T!!”, I am still pushing myself to do it. Plus, I never tire of the many Shaun T –isms that I know are coming: “THAT SHIT IS BANANAS!”, “I’M NOT TRYING TO HURT YOU, I’M TRYING TO MAKE YOU BETTER!”

 So, that was then, and this is now. And now I am fat. Very fat. And unfit. And about as flexible as a plank of wood. I am out of shape and in need of a kick up the butt. So Shaun T is going to be my kick. I am starting today, and I am going to be updating week by week as I go along. The main purpose of my doing this is to feel better about myself, to not feel so ashamed of my body, and to not feel quite so helpless about the way things are right now. I may not have any control over the OCD, or the Depression, but I can do something small to help my body, even when I can’t help my mind. I know from experience that fitness and health certainly helps when it comes to seeing things more clearly, so I am working towards that too. I don’t doubt this is going to be so hard, but I also know that there is a reward at the end of it. If I can stand tall, look at myself and think, “hey, I may not be perfect, but I’m doing my best” then that will be enough. The programme is nine weeks long, and this is my first week.

 I’m off to do workout number one – Plyometric Cardio Circuit – wish me luck!

 Ps. If you want to join me, you can get Insanity here:

Amazon – http://www.amazon.co.uk/Insanity-Ultimate-Workout-Fitness-Programme/dp/B002QZ1RS6/ref=sr_1_1?ie=UTF8&qid=1416317281&sr=8-1&keywords=insanity

Beachbody (with an option to pay in instalments) – http://www.beachbody.co.uk/product/fitness-training/insanity-workout.do

OCD, medicated and fat

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Since I started blogging a couple of months ago, one of the things that I have noticed is that often, when people are struggling with one mental illness, they are also struggling with another. If they’re really unlucky, they may find themselves struggling with more than that, which prompts me to wonder how on earth they face the day. I have nothing but the utmost sympathy for anyone that does this. There seems to be some kind of intersectionality of mental illness; I sometimes wonder if we have a mental-health-specific immune system. I imagine that it works in the same way as our regular immune system, so that when we are affected by one condition, we instantly become more susceptible to others. I hope that I am wrong, but it’s just how it seems sometimes. Too often do anxiety disorders seem to come accompanied either by a side dish of depression or by a secondary, (sometimes tertiary) anxiety disorder. With mental illness, there is no such thing as fairness.

When I was first put on my OCD medication four and a half years ago, I remember reading through the Papersheet of Doom that they enclosed with the meds. Among the many unpleasant side effects that go along with taking this stuff every day include: insomnia, headaches, diarrhoea, nausea, fatigue, nervousness, anxiety, feeling tense, decreased sex drive, tremor, dizziness, excessive sweating… [and the list goes on]. Hilariously, there is a disclaimer that says that you should contact the doctor immediately if you should fall into a coma. Which is always good to know. Unsurprisingly, I wasn’t skipping to take my first one of these pills.

Within a couple of weeks the side effects started to settle in. I felt nauseated a lot of the time, I found that I was trembling for no reason, I was nervous and on edge just sitting at my kitchen table. There was a constant knot in my belly and I felt like crying for no reason whatsoever. And then there was the fat. It did not take long before I started gaining weight. Despite the fact that it was listed in the aforementioned Papersheet of Doom, I didn’t think it would actually happen.  But, as the weight crept on, the clothes felt tighter and I got more and more fucked off. I upped the exercise ante in an attempt to stay the swelling of the fat tide. It worked to keep my body on a fairly even keel, and minimised the fat fluctuations.

Last year, after a discussion with my doctor, she agreed to allow me to reduce my dosage from three little pills a day to two. I thought I was doing ok with the reduced meds, I seemed to be maintaining the OCD (however much you can ever really ‘maintain’ it), and in my mind I felt so relieved that I was well on the way to Getting Off Those Bastard Pills. I had always hated taking them. Hated being tied to them, hated the prospect of having my brain chemically altered in any way, hated the way they would sometimes lodge themselves in my throat, causing the white powder to puff up into my throat, a haze of compounded pollutant lacing my mouth and my nose. There is nothing quite like the pungent taste of brain altering chemical concoctions in your mouth, yuck. Of course I want to get off this shit.

Looking back now, I can see that the worsening of my OCD and gradual onset of depression was probably, in part, a result of this reduced medication. I did consider it at the time but I tried to convince myself that it was just a phase that I would have to go through as my body adjusted to the reduced dosage. I was sure that my body wouldn’t let me down, it would catch up eventually and all would be well. Except that it wasn’t. My body never seemed to quite do what it was supposed to. In the late autumn/early winter of 2013, I started to feel less and less like myself. My OCD kept going from amber to red; occasionally back down to green, but mainly hovering around amber and red. I started to feel sad a lot of the time. I was getting frustrated with myself and my apparent inability to sustain a change in my life. I felt like I was drifting backwards. As the OCD was gaining steady momentum, the latent feelings of self-loathing started their steady climb. Functioning like a normal human being seemed like a daily Herculean task of which I was just not capable. I sought escapism in Netflix, in catch up TV, in staying up listening to news channels, in leaving myself behind. And eating. I began to eat and eat and eat. It is only when I look back now that I can see how much.

Six months of over eating later and I had put myself at the biggest I have ever been in my life. These days when I look in the mirror, I genuinely do not recognise myself. I look like my old self in a fat suit. My face is round and flabby and my body is a disgrace. I hate looking at it. I wouldn’t even dream of looking at my naked body in the mirror, I am sure I would find it repulsive. My clothes don’t fit and I can feel my heaviness in everything that I do. These days, I do everything much more slowly, like an old lady. I waddle like a rotund and plump duck and I can feel my ever expanding belly spilling over like an inflatable mushroom. When I see myself in photos it makes me cry. I look so unhappy, so ashamed of my body, so disgusted with myself. My face is the face of someone who just hates herself. What’s worse is, I don’t have a shred of sympathy for myself, I look at myself and think, ‘look at you, you disgusting fat fuck! Who would look at you and see anything other than fat? Who would look at you and see anything other than a slob, a lazy, greedy piece of shit?!’ That is what I see. And that is how I feel, like I have betrayed myself in every possible way.

What’s weird is that, when I look at overweight people in the street, I don’t feel any of these things. I don’t assume any of the things that I assume about myself. I detest fat-shaming (if that is even a term!) in all of its forms. I hate that the diet industry keeps people (particularly women) chained into patterns of self-loathing/diet relapse/weight gain. I hate that, somehow, weight has become intrinsically linked to a person’s value and self-worth. I think that all women (and men!) should be free to wear a bikini regardless of whether they are a size 18 or a size 38. I think that everyone should be free to eat whatever the fuck they want without incurring the judgement and condemnation of strangers. Above all, I think that everyone, regardless of their waist size, should be judged not by the number on their bathroom scales, but – in the words of a great American – by the content of their character. But, for whatever reason, when it comes to myself, I do not afford myself the same courtesy.

These days, when I am walking down the street in big, baggy, ugly clothes, I feel ashamed. I hate being out in public, especially in daylight, because I just feel the judging gaze of passers-by. I know what they’re thinking when they see me – that I’m a mess. Because I am a mess. I am a fucking mess of shit. I sense people looking at me and I feel like I am in disguise, like I am wearing the body of someone I do not know. I want them to know that this is not me. I am not someone who looks like this. I am not someone who wears black all the time. I am not someone who scrapes their hair back into a mess without so much as glancing in the mirror before stepping outside. I am not this person. Except I am. At this moment, this is who I am.

In all honesty, I have never seen the Fat Issue as a mental health issue at all. I have just seen it is my own personal weakness, just something else I can’t control, something else that makes me hate myself a little bit more. So, when my CBT therapist suggested that we tackle my relationship with food, and that we tackle it as number one item on the list, I was reluctant to say the least. I was there to kick the crap out of OCD, not challenge my addiction to sugar. After all, compared to the ongoing hell of OCD, my fatness is just another drop in the ocean of shit. That’s how I see it anyway. However, when he explained how my relationship with food was affecting my mood (depression), and how this was, in turn, affecting my ability to deal with my own OCD, I began to see how there might be an advantage to tackling the Fat Issue. I was bowled over to hear the words ‘Bulimia’ and ‘Body Dysmorphia’ directed at me.

I challenged the labels on account of the fact that, whilst these are disorders I know very little about, I do know that they can be horrendous and debilitating, just like OCD. It would be insulting to anyone who has ever lived with either of these conditions to count myself among them.  Yes, I have a very unhealthy relationship with food. But, Bulimia? No. I hate myself in many ways, I hate how my face looks and how my body feels but it doesn’t control everything that I do in the way that it would a person with Body Dysmorphia. No. I genuinely do not believe that I fall into these categories. However, I must admit that when my therapist went on to explain how and why he had reached his conclusion, I could kind of see where he was coming from. I had always figured that Bulimia was defined by the act of vomiting, but apparently it is in the act of binge-eating, and by the person’s overall relationship with food – and, in all honesty, my relationship with food is pretty toxic. My homework for that week was to search for books and reading material on binge-eating and Bulimia (Overcoming Binge Eating by Dr Christopher G. Fairburn).

One thing that I do recognise is that my relationship with food and my own body is absolutely affected by my relationship with OCD. When OCD is at its worst, all of the shutters seem to come down, I become more vulnerable, I despise myself that little bit more. When everything seems hopeless, absolutely nothing seems worth it. Getting out of bed doesn’t seem worth it. Making an effort to look relatively normal doesn’t seem worth it, no one wants to see this, I don’t want to see it. Close the curtains and leave me be to eat whatever the hell I want and do nothing at all. Fuck it, if I am fat and disgusting anyway, what’s one more binge going to do? Why on earth shouldn’t I carry on eating myself into a sickly sugar induced stupor? At least then there is a chance that I will fall into a sugary haze that will eventually become sleep. And hey, with sleep – it’s like that Danish dude said – with sleep, what dreams may come…

If just for a while.