Potty mouth – aka public toilets

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Trigger warning: blood, toilets, HIV, contamination

It’s been a long time since I have written about OCD. A lot has happened since then. I have joined an OCD support group, I have been to see the best OCD specialist in the land, I have been put on a transition to new meds. In OCD land, I have been exploring new territories, beyond those confined to Middle OCD Earth. There are a few posts in the pipeline, posts I have been wanting to write for some time, but have just had too much in my mind to even bring myself to put pen to paper. Or fingertips to keyboard. Anyway, today something happened that I have thought of little else all afternoon but getting myself back to my trusted blog.

Half way through a car journey that involved a long motorway and some coffee, I found myself at a motorway service stop, heading for the toilet. Now, anyone who knows what contamination OCD is even remotely like, can understand that the prospect of using a public toilet can be daunting at best, fucking terrifying at worst. I once consciously dehydrated myself for some nine hours at a music event, because I could not bring myself to go and use the toilet facilities (in my defence, they were porta-loos). There is a plethora of things that can go wrong in the OCD mind when faced with a public toilet. There are the many door handles, the floors, the bins, the sanitary towel disposal units, the toilet seats, the toilet roll holders (yuk!), the toilet roll itself (did they store any spare toilet rolls on the floor, or perhaps on the sanitary disposal bin?), the toilet brush, the inside of the toilet bowl, the underside of the toilet bowl, the sink, the taps, the soap. EVERYTHING. Contamination potential is off the scale for me these days (although being able to go into a public toilet is an achievement in itself, it was only several years ago that I just could not use them). As you can imagine, there is some Poirot-esque inspection of all facilities before I can even bring myself to use any toilet.

Initial inspection over, and then comes the indignity of the act itself – to be blunt, I am the queen of the Public Toilet Hover. For as far as I have come, I am yet to be able to bring myself to come into contact with the toilet itself, I don’t care how many times an hour that chart says the toilet is inspected. Unless you are bleaching the shit out of this place after every single user, it’s not clean enough. Who am I kidding? Even if you sprayed the whole thing down with industrial strength bleach, it’s still not going to be clean enough. So off I go. Feeling pretty pleased with myself (no contact with the seat/bowl, no splashing on my skin of any kind from the toilet bowl – apologies, graphic I know, but pee does have a tendency to splash!), off I go to pumice my hands clean with soap and hot water.

I notice a small speck of what looks like tissue and, sure enough, it’s got blood on it. At least I think it’s got blood on it – I don’t know, but I can’t be sure that it’s 100% definitely not blood, so I am going to go ahead and assume that it’s blood. And contaminated blood to boot – of course it is. Live, dangerous, contaminated, powerful, biology-defying blood. Did I stand on it? No idea. Which means that I did. Which means there is blood creeping all over my shoes. I head back to the sink and begin the soul-crushing process washing the soles of my shoes in the sink – trying my hardest to ensure that the water flows DOWNWARDS, and does not go back onto the shoe and through to my feet – blood all over my shoes, blood on my feet. I clean my shoes, clean my hands, clean the tap (in case the water used to clean the shoes somehow splashed the tap). I head towards the door in a haze of WHAT THE FUCK DO I DO NOW WITH THESE FUCKING SHOES AND MY FUCKING JEANS THAT PROBABLY TOUCHED THE FUCKING FLOOR.

At this point I should probably mention that, whenever I use a public toilet, I will always use the disabled toilet if there is one; if, however, the disabled toilet requires a key and the guard of said key is nowhere to be found, then I will go to the next best thing – the family changing room. There are two reasons for opting for the disabled toilet over the regular cubicle in the regular public toilet. First of all, in my head, I figure that the disabled toilet is likely to see far less traffic than your standard row of cubicles. As such, it is – statistically speaking – less likely to be as dirty/contaminated. Secondly, a toilet that has a sink in situ is a dream come true (okay, slight exaggeration, let’s just say that it is an advantage) for those of us that are prone to washing our hands/body/shoes to excess. I recognise that it is not ideal that I – someone who does not live with a physical disability, or have a child – should use a toilet designated for those who really do need it but, I can honestly say, hand on my heart, that in these moments, being able to use a toilet that is not only less contaminated (or at least seems to be, to me), but also more set up for an OCDer, can be a huge respite for my anxiety levels. I am sorry that it must come to that sometimes, but honestly it is all I can think to do. Sometimes, in life, we go for what is easier, for what will bring less distress, for what will make us feel a little less isolated. The disabled toilet, for me, is one of those things. Sounds silly perhaps, but, unfortunately, it’s a truth of my particular OCD, for however much I wish it weren’t the case.

I walk out and, to my embarrassment, there are two women standing there with their small children. I feel guilty and so ashamed that I have used a facility that is reserved solely for them. I apologise to one of the women and proceed to hold the door open for her. She glares at me, frowns and spits, “OH!! You don’t have a child? You just felt like using the changing room?”. Humiliated, upset, sad and angry (mainly at myself), I snapped back, “Actually, I am not able to use regular public toilets” before turning away and storming off, indignant and crushed. I went back to where my partner was waiting for me and burst into tears. I cried because I was scared to death about what could potentially be on my shoes. I cried because yet another day had been ruined by this fucking disease. I cried because I was so ashamed, and so embarrassed that my abnormal behaviour had been called out in the most public of ways. The woman had a point – the toilet is designated for families, for those with children; and of course she has no idea that I was using that particular toilet to avoid contaminating myself (ironic really, given what happened). But I maintain that she did not have to call me out quite so viciously, and with such smug condescension. I don’t regret using the toilet, but I regret that I am at a place on my OCD journey where I feel that I have to use it. I don’t regret snapping back at her, but I do regret not finishing my sentence. Perhaps, next time, I’ll be brave enough to say:

“Actually, I am not able to use regular public toilets, because I have Obsessive Compulsive Disorder. Goodbye.”

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The Butterfly Effect: The Thyroid and Mental Health

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It’s been a while since I have written. And that’s mainly because I just haven’t had the energy; which, it turns out, happens to be the point of this post!

I’ve mentioned before (see previous post “OCD, medicated and fat”) that I have, for some time, been struggling with my weight. The truth is, I have always struggled with accepting my body, but over the past couple of years it has become increasingly difficult to look at myself in the mirror without wanting to cry. The main reason for this is because I have gained so much weight – I am talking a serious amount of weight, I’m talking being the biggest I have ever been in my life, shopping in plus size clothes shops and still not finding stuff that fits properly. I’m huge. When I take a shower I avoid looking down, I don’t want to see what it all looks like. I wear clothes that are as baggy as possible and try my best to avoid taking pictures that show anything below my neck. It’s out of control. Aside from the weight itself, the thing that has upset me the most is the feeling of not being in control of my own body because, no matter what I do, the weight just won’t budge. I have even started working with a personal trainer to try and get this mess under control.

Over the past year or so, there have been a number of other symptoms that have started to surface; symptoms which, on their own, don’t mean a great deal but, when pieced together, paint a picture of someone who is far from healthy:

Steady and consistent weight gain

Depression

Irregular and heavy periods

Extreme fatigue

Oversleeping

Dermatitis

Pains in my ankles and in my legs (so much so that, sometimes, I struggle to walk)

An extremely slow digestive system

Dry/brittle hair

Difficulty concentrating/remembering simple things

Swollen hands/feet (I recently had to cut a ring off my finger)

The list goes on.

It is because of this combination of symptoms that my partner has, for some time now, been trying to convince me to go and get my blood tested, to check that there wasn’t an underlying cause for all of this. It took me 6 months or so to pluck up the courage to go because, shockingly enough, as someone whose OCD centres around a blood-borne illness, I wasn’t exactly skipping to get my blood tested. Generally, I try my hardest to avoid those situations that might prompt an OCD freakout – which means that a doctors’ surgery (and, specifically, the room of a phlebotomist) is never going to be up there on my list of Places I’d Most Like to Visit. Also, after being on medication for 5 and a half years now, I certainly wasn’t relishing the prospect of potentially being put on yet more medication. My medicine cocktail seems to get bigger every time I pay a visit to the GP these days…

It all came to a head in recent weeks, when I have generally just been feeling very down and have found myself getting more and more frustrated with the way my body is behaving. It would be fair to say that, sometimes, it has felt like my body has been betraying me; and not just because of the weight, but because of all of it – the constantly wanting to sleep; the horrendous periods that just leave me exhausted, drained and in so much pain; the depression; the digestive system that seemed to not be working. All of it. I think I just got fed up of feeling so shit.

So I went to the doctor and he arranged for a full blood screening, which really wasn’t fun. Watching the nurse just casually handle the vials of blood; wondering how sterile that arm strap is (the one that they use to get at veins, at least I think that’s what it’s for); feeling embarrassed as I asked her why she wasn’t wearing gloves. My body was rigid as an ironing board when she stuck that thing in my vein, so much so that I ended up with a nice juicy bruise where the needle had been. One vial, two vials, three vials, four vials, five vials of my own blood. I wanted to be sick. The results came back a week or so later and it turned out that I was showing signs of hypothyroidism, a form of thyroid disease. So I would have to go back for more blood tests. Hurrah.

Off I went for more blood tests. Again, so much fun. Particularly as this nurse had left the vials of SOMEONE ELSE’S FUCKING BLOOD on the desk. Again, another bruised arm. I really hate blood tests. This time the tests confirmed what the doctor had suspected – I have a form of thyroid disease. The doctor was very nice (I have recently switched GPs) and explained the whole thing to me, he even drew me a diagram to illustrate exactly what my mischievous little thyroid has been up to. So, as far as I understand it, my thyroid has become oh so confused by its own existence and has resorted to basically attacking itself. Now, as a result of this chemical self abuse, it is failing to make enough of some special hormone that is the key to eternal health (okay, slight exaggeration, but it turns out that your thyroid is pretty fricking important, and kind of acts like a mini brain that controls the goings on of the body’s hormones. Pretty big stuff for a little butterfly-sized piece of tissue that sits in your throat). So my thyroid is broken, which means I will be on a replacement treatment for the rest of my life, literally for the rest of my life. Gutted. I am beyond gutted. And really sad. First, my brain is broken because I’m crazy and I have to take pills for that, and now my thyroid is packing up which means yet more pills (on top of that I have also learned that I have insufficient levels of both vitamin D and iron, which means supplements for the foreseeable future – but at least that is only temporary).

When I initially learned that it was suspected hypothyroidism I sent a text to my friend (who herself has been to hell and back as a result of a hyperactive thyroid, which is a different form of thyroid disease) who promptly reminded me of the positive of the situation – i.e. at least I now know what has been the cause of all of these things and I can move forward with the treatment. I won’t lie, there was a part of me that almost felt vindicated; all this time I have been feeling so ashamed of my weight, so embarrassed by my lack of energy to do anything, so baffled by the permanent brain fog that has just been suffocating my mind. Not being able to concentrate on the easiest of tasks, not being able to remember the simplest of things, hobbling like an old lady down the stairs whenever I got the pains in my legs; all of it had just made me feel so worthless and so pathetic. Now, all of a sudden, it made some sense. And it was kind of liberating to know that I wasn’t doing this to myself, that it was something beyond my control. My partner, who is a doctor, also said that there was a possibility that the thyroid disease had contributed to my falling into depression in the summer of last year. Apparently, the issue with the thyroid could have been building up to this point for years, which would certainly explain the weight gain at least. Either way, I hope that the treatment with help.

I am currently on day 3 of my new meds (thyroxine). My GP said that I should start to notice a slight difference in my tiredness levels after a week or so which is definitely good news and I am looking forward to that! The other day I felt so exhausted after I had taken a shower that I had to lie down; I ended up falling asleep for five hours. So, as far as I’m concerned, the prospect of having more energy is definitely one I can get on board with. As my Dad put it, hopefully I will start moving again soon – I really hope so. In a couple of months I will have to go back for more blood tests to see how my thyroid is reacting to the treatment so far; if necessary, the docs will adjust the dose. So it looks like blood tests are going to be a feature in my life from now on. But I’m trying to hold on to the positive – my friend is now referring to us as the ‘T Birds’, owing to our shared thyroid related issues. Well, I always did love Grease.

So, what’s the point of this post? Basically, I wanted to post this to encourage anyone with any of the symptoms that I have mentioned above, to go and get your thyroid checked. It’s so important to be aware of what your thyroid is up to, especially for those of us that live with one of the many forms of mental illness, of depression, of anxiety. To think that this little piece of tissue has the power to do so much to our bodies and to our minds; to think that it has the power to plunge a person into a deep depression – this is a powerful little butterfly-machine, and if it’s not working properly, the effects can be horrible and they can be debilitating. I am not saying that the thyroid has caused my own depression, I can never know that, but I am so glad that I am now aware of the connection between thyroid health and mental health.

So, if you do one thing this week, book an appointment with your GP and go and get your thyroid checked!

You can find more info about thyroid disease here: http://www.thyroiduk.org.uk/tuk/index.html

It’s about eggs.

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It’s been a while since I’ve written a post and, the truth is, I haven’t been in the right frame of mind to write. As 2014 drew to a close and the prospect of 2015 loomed ever closer, I felt less inclined to write, and more inclined to try and forget. To be frank, I haven’t been in the mood to contemplate this illness, haven’t been remotely interested in sitting at my laptop and trying to explain how I feel. It has sapped so much of my energy in recent months and years that I think I was in need of a break, a break from consciously contemplating it. A break from thinking and reflecting on it. Living with it can be tiring enough. Then, yesterday, when I was making dinner, something happened that made me want to write.

Often, when people think about OCD, they think about cleaning. They imagine people obsessively cleaning their hands, scrubbing their bodies, disinfecting their homes. And there is some truth in that. But that is not everything, not at all.

It’s also about eggs.

Eggs? Yes, eggs. On my way home from work yesterday evening, I made a plan to have a (fairly) square meal, a meal that I would prepare myself (something that I have not been doing much of lately) and enjoy, warm in front of the TV. I had a particular craving for eggs. I really love eggs: little protein bombs, versatile and delicious. I opted for scrambled eggs on toast; quick, easy and nutritious. Having purchased a pack of ten fresh eggs on the way home, I loaded up the toaster and got to work. I cracked the first egg, and into the pan it went. I cracked the second, into the pan it plopped. Before firing up the hob, I nervously scanned the contents of the pan, hoping that I wouldn’t find anything disturbing swilling around with all of the protein and goo. Unfortunately, my eye was caught by a small brownish-red speck floating in the cold, clear, egg-white. I am not sure what the brownish-red substance was, but to me, in that moment, it was blood. Animal blood. And even animals can contract HIV, I’m sure of it. I throw the eggs in the bin, and get a clean pan. I repeat this entire process and, once again, I spy a tiny fleck of something sinister, lurking around the perfect dome of raw yolk. In a depressing moment of déjà vu, it results in my throwing away the eggs. I get another clean pan from the drawer (if this carries on, I’m going to run out of pans) and try again. Fortunately, this third time round I cannot see any brownish-red flecks anywhere in the pan; relieved, I get on with cooking my set of lovely clean eggs. I clear away the offending shells and disinfect the kitchen worktop, washing my hands countless times, just in case. I’m sad, because this entire fiasco has all but ruined a meal that I was so looking forward to, the first meal I have cooked from scratch in ages. I’m irritated because it has tainted what was otherwise going to be a quiet evening in front of the TV, but now I’m tired and on edge. I’m pissed off because I’ve thrown away four perfectly good eggs, because I thought they might give me HIV.

Food can be a minefield if you have contamination OCD. Pre-packaged food brings with it images of strangers in factories handling your food with hands covered in cuts, grazes and loose plasters. Images of blood getting into the food, plasters coming into contact with what I am about to eat. Fresh fruit and vegetables leads you to imagine fruit-pickers with dirty hands, perhaps cutting their hands on shrubbery, branches and fruit-picking tools (whatever they are!) as they work themselves to the bone. And who’s to say that there isn’t blood on my fruit? If I didn’t pick it, how do I know? It’s at times like these, when my mind wanders to blood, that I wish I had the patience to grow my own fruit; at least then I would know for certain – well, almost – that no one else had been able to bleed into my food. For me, the truly ‘safe’ fruits are the ones that have skins on – at least that way you can reduce the risk of contamination by cleaning, and then removing, the contaminated cover.

If I go into Starbucks for a coffee, or even into the local deli for a quick sandwich, I have to fight with myself not to examine the hands of the person behind the counter, scanning her skin for any signs of cuts or splits in the surface. I will also, if I am feeling particularly anxious, search her neck and face for any signs of scratches or particularly sore spots. If I can see any sign of blood or trauma to the skin, I will instantly want to leave. I won’t want them to touch anything that I am about to eat or drink. I will pray that I am served by the employee who has no signs of any wounds or dry blood whatsoever – her skin is so intact she could be made of plastic, yes she will do. I will feel particularly relieved if those employees charged with preparing all of the food are sporting disposable gloves. It might look clinical and – let’s face it – more than a little bit odd to see that the person loading up your sandwich is wearing latex gloves, but it really does take some of the underlying anxiety away, if just for a moment. It’s like the moment when you realise that the public toilets have a no-touch flushing sensor, or that most wonderful of bathroom devices – the hands-free tap system. One less thing to get myself into a state about, thank you universe!

A lot of my days can end up like my eggs – seemingly okay at first, on the surface everything is just fine. But then something so small will happen – a speck of something on the pavement; someone at work will get a tiny microscopic paper-cut and then later offer to make me a cup of tea; they’ll go and touch all of the doors and surfaces near me, rendering everything a danger zone; my shoelaces will scrape the floor which means I am making a conscious effort all day not so sit with my leg tucked under (as I normally do), which means I am uncomfortable at work all day; someone will send a well-intentioned e mail to the office talking about how, at this time of year, we need to be more hygienic as an office, and be wary of coughing, sneezing and spreading our bodily fluids (!) everywhere; she’ll then promptly distribute anti-bacterial wipes/sprays/gels – which is just an invitation for me to obsess. So, you see, the egg is tainted; there is always something that can ruin my eggs. I can be working my way through on a run of perfectly good eggs, but somewhere, in that batch, there’ll be a bad one. And it’s exhausting. It’s exhausting to know that, to anticipate a fall. I think that’s why sometimes, when I am having a really good day, I can get so excited and hyper – because I just know that I’m on a clock and, before long, I will be ruminating and obsessing about some fleck of nothing in the corner on the carpet. And it’s so draining, and so sad, to spend days hiding in my own mind like that.

I hope that will change soon.

The First Psych Consult

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So I had my first psych consult.

My appointment was scheduled at 9am with a Dr Smith* (*not his real name). At 9.10am I was called by a Dr Jones* (*also, not his real name), a young doctor who looked fresh out of whichever medical training he had recently completed – he didn’t look much older than me. I wondered if he was perhaps a nurse who would be giving me a preliminary consultation, before seeing the Doctor himself. No, Dr Jones would be seeing me; he explained that he was part of Dr Smith’s team and so it was essentially all the same thing. Funny, I thought I had an appointment with Dr Smith. Perhaps he has a more important case to attend to. I have to be honest, I wasn’t convinced by the swap and, as much as I am ashamed to think that I pre-judged him based on his age alone, it’s true. It is very unfair I know but, when it’s your health at stake, you want to be reassured by an experienced pro who has seen so many cases that s/he is absolutely certain that s/he will be able to cure me, because, by now, it’s just part of the day job. But, at this point, I am grateful for anyone and, as my Dad pointed out to me later, I could have had an older doctor that knew nothing. Plus, Dr Jones is very nice, and listens intently to everything I am saying, repeating what he is picking up as I go along. It’s reassuring that what he is reflecting back to me is pretty accurate, I am grateful for his attention to detail.

So begins a rather humiliating questionnaire that goes into every possible detail of my existence, right down to the fact that I was delivered by caesarean section, that I was jaundiced as a baby and had a squint correction at two years old. Struggling to see what any of this is going to do to help them understand my OCD, but they are the pros, wearing the metaphorical white coat. Dr Jones asks me to go into the details of the OCD manifestations that I had during childhood, and they all come flooding back, like the most unwanted guest at the shittest house party. And so I remember the hours spent tapping, counting, switching lights on and off, retracing steps, saying prayers in my head over and over again, all so that my parents wouldn’t die. I was convinced that, if they did not do any of these things, they would die. The religion that was so often my comfort could also be my enemy – I was scared of God, of what God would do if I was in any way a bad person. Surely, the first thing would be to kill my parents. I feared for their lives. I remember once when I was very small, my Mum had a bad throat and coughed up a small amount of blood, I thought she would die. One of the most vivid nightmares I have ever had was one where my Dad died. He was away for work at the time and I had to go and sleep with my Mum in her bed. I was obsessed with doing everything I could – via magical thinking and ridiculous rituals – to keep my family safe. Of course, none of this does keep them safe, but it’s a risk I was never able to take. When you are that small, and genuinely afraid that your actions will kill your parents, there is a terror that you cannot shake. And it’s not something I could tell my parents, because then they would know I was a bad person. See how it gets you, with its vicious little claws. It’s a knife to your throat and a gun to your head, choose. Looking back now, if I could say anything to my nine year old self it would be to tell them. Tell them everything. You won’t be told off. They won’t be angry. You are not a bad person, and they will not love you any less. But I’m 31 – it’s easy to say that now. Back then, most people didn’t know what OCD was, not really.

Once the in-depth questionnaire was over, Dr Jones called in the aforementioned Dr Smith, who I learn is the consultant psychiatrist. I must admit it felt like the sole focus of the session became about trying to convince me to take yet more medicine. I have been on the same medicine – at the highest dose – for four and a half years. In general I have found that the medicine helps to take the ‘sting’ out of OCD freakouts. They are still there, but the physical ache that often accompanies them occurs less frequently, and the mind fever is ever so slightly less intense. They have helped me a great deal and have kept me afloat. I would still like to be free of them one day. When I went to the doctor a few months ago she attempted to refer me to the psychiatric care straight away. She was told to prescribe me with an additional drug (which I won’t name) to the one I was already taking and, if that did not work, the psychiatric team would consider consulting with me. My doctor admitted that she had never come across this particular drug being used for OCD, but she advised that I try it anyway because, after all, she is not an OCD specialist. I, however, objected to the idea of taking another medicine: having spent the best part of four years wanting to come off the medication (and its accompanying side effects) that I am on, I certainly didn’t relish the idea of swapping my daily shot of my medicine straight up into a medicine cocktail du jour. I took the prescription that my doctor printed anyway and bought the medicine. It is still sitting on top of my bookshelf.

I could not bring myself to take the medicine. I had read the papersheet of doom and, of course, it made for shit reading, they always do. I researched the drug and its use for the treatment of OCD: I was surprised to learn that there was very little out there to suggest that it was regularly prescribed to treat the mind demon at all. It didn’t appear on a single list that I found of drugs used for standard and specialised OCD treatment. I wrote to an OCD specialist in London, he expressed surprise at my being prescribed the drug, explaining that it was usually used for generalised anxiety disorder, as opposed to OCD specifically. With all of this in mind, and not wanting to take a drug recommended to me by a complete stranger who had never met me – besides which, how do they know that prolonged use of all of these chemicals is not going to kill me anyway – I decided to hold out on the drug front. And I felt like a naughty schoolgirl for doing so. So I did not relish being, once again, in a situation where I felt the need to fight to not have to rely on pills to fix me. All I want is a professional to talk to, someone who knows this illness and who really understands it.

When Dr Jones asked me what I wanted from the psychiatry sessions, I gave the simplest – and I would have thought, most obvious – answer that I could: I want you to cure this OCD. I do not want this demon in my head anymore. He seemed surprised by my answer.

They told me they would consult with my CBT therapist (who has been treating me for depression) before switching my medication, that they would let my GP know when to switch over the medicines and that they would give me a call to confirm all of these conversations that would be had about me, but not involving me. Maybe I would be referred for specialist psychotherapy, but it was all a bit hazy and ill-defined. They said they would have a follow up meeting with me in two months. I must confess that, at that point, you do start to wonder if you are the only person in this room who is crazy, because to ask someone who spends most days climbing the walls of her own mind to wait yet another two months for help, seems a bit cruel and more than a little bit like a fist in the face. I questioned the two month waiting period (which would bring the grand total since initial referral to seven months) and Dr Jones tried to reassure me that hopefully it wouldn’t be that long and that he would try to get the ball moving. I thanked him and, despite my disappointment, was grateful to him for understanding. Looking back, I recognise that, as much as I am at the mercy of this system, so are they. They are doing the best that they can with the limited resources that have been permitted to them by the palace of Westminster, one hundred and thirty miles away. That’s because the government, in all of its infinite and boundless wisdom, has decided that mental health just doesn’t really matter.

All in all, I left my first consult wondering what the hell had just happened. I cried all the way to work, wondering what on earth was the point in anything.

Beauty and disease in autumn

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When I woke up this morning, I felt happy. Happy because I could see straight out of the window and the world outside was just spectacular. The sun, like a gloating puppeteer, was in her place at the sky’s throne, watching over the scene below, flooding the earth with light. The sky was the kind of blue that you will only ever see in autumn – deep, electric and laced with gold. The few clouds I could see were cheerfully bobbing across the sky; fluffy, bouncy and creamy white. The trees outside my window were ablaze with light, heavy branches bouncing majestically on a hearty October breeze. It was one of those perfect, crisp and heavenly autumn days that make you glad to be here to see it.

I spent yesterday evening with one of my closest friends, watching a film (very good – The Pentagon Papers), eating Chinese takeaway and sipping fizz. We chatted, we giggled, we had fun. When I got up this morning we drank tea, chatted some more and had a good chuckle about her eccentric new German teacher. It was brilliant. Normal. When I left at lunchtime, I strolled into town to catch the bus back to my house. I walked through her neighbourhood (incidentally, one of the most beautiful in the city) and felt so happy, so lifted and so grateful to be able to stroll into town of a Sunday, passing all of this wonderful autumn-ness that surrounds me. Yellow, orange, copper, brown, terracotta, red, bronze, maroon, green – all of the colours that make up the most perfect of autumnal palettes. I was so happy that I even stopped to take pictures on my phone. I contemplate a Facebook post in celebration of this most wonderful autumn (proposed status: ‘I may be biased, but an English autumn day is surely among the most perfect and most beautiful things imaginable….’).

In the midst of my happy autumn haze, I decide to take a coffee-shop pit-stop before catching the bus home – just me, my coffee and my new book. But then, of course, the universe shat on the dream. As I stroll across the main square, scanning the floor for HIV, I notice a few small patches of a brownish-red substance that screams at me from the pavement. I try to manoeuvre my way around the mess but am stopped in my tracks by a huge explosion of RED that is about 3 feet wide. It’s blood, I am sure of it. It looks to me like someone has split their face open on this pavement. I take a few steps back to have another look at the patches. I take a photo on my phone. That’s right, a photo. The reason I do this is because, in the midst of an OCD freakout, I cannot trust my own eyes. A photo is as objective as I can get in this situation so, perhaps, when I review the photo from a safe distance, I will see that it is not blood. But no, when I look at the photo again, I am fairly sure, this is blood. I would post a picture of it, but I don’t want to prompt feelings of anxiety in anyone that has similar blood contamination fears*. That it has ruined my day is enough, let it not ruin someone else’s. (*I decided to post one of my Perfect Autumn pictures instead….)

As I walk away, I check the hem of my trousers – is it touching the floor? Yes. Fuck. I can’t stay in town any more; I go and get the bus back to my end of the city. I know in my mind that I am going to have to throw my shoes and trousers away when I get home so, when I get off the bus, I dive into a coffee shop to sit for a while, just to put it off a bit longer. I order a croissant and coffee but, by the time it arrives, I am crying and I can’t even taste the croissant as I wolf it down. I find myself resenting the woman in the corner who is in the process of analysing her relationship to her companion. Everything about her is pissing me off – and that’s not because she’s done anything wrong. It’s because she’s enjoying the normality of going to a coffee shop and just hanging out. She’s got her feet casually resting on a chair, then she’s got them tucked under her – she is not in the least bit concerned that she has HIV on her shoes (or, maybe she is? After all, there are no better masters of disguise than those who live with anxiety….). I hate that I can’t be her. I wonder if the photo I took could somehow contaminate my phone. This fucking disease. My mind disease.

I cannot stop crying and it’s embarrassing. I walk home. I plan ahead to go in via the back door: if I have to take off my shoes and trousers before I get in the house, it’s better that I do it at the back door, and not in full view of the street. As it turns out, it’s not much better going in via the back door as my garden faces a row of houses on the adjacent street. It’s pretty humiliating to think that some unfortunate observer may look out of their bedroom window just in time to see a 31 year old woman undressing herself on the doorstep. I take off my shoes, my trousers and my pop-socks, leaving them in a pile outside my backdoor, I’ll deal with them later. I walk into the house, grateful for the sanctity of a relatively clean floor.

I lock the cat-flap behind me – I can’t risk the cats coming in at this point. The reason for this is the Trail of Contamination: the cats would have walked on the same pavement that I have just walked on with my blood shoes, which means that they will have blood on their paws, which they will tread all over the carpet and all over the furniture. Blood everywhere. They are such sweet cats, and have been my little companions these past few months while I have been signed off work. They sometimes like to climb on my lap and sit, their little paws just draped over my knees – it’s a welcome comfort. But there will be no sitting on my lap, no blood paws today. I have to keep this space as clean as possible for as long as possible. I will let the cats in soon – I have to – because it’s not their fault I’m crazy. But, for now, I just need a few moments in a clean space, before it all becomes contaminated.

Mind Fever

Eyes-on-Fire

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.

Drunk in blood

keep-calm-and-donate-blood-5

When I completed my first course of CBT two years ago, one of the ‘goals’ of my treatment had been to get to the stage where I could walk into a blood donation centre and give blood for the first time. It had been something I had always wanted to do but, for obvious reasons relating to contamination and crippling fear, I had never been able to do it. In fact, each day when I walked past the local blood donation centre on my way home from work, I always walked on the opposite side of the road. I couldn’t bring myself to walk that closely to a place whose sole business was human blood.

So, here I was, a month or two after my CBT course had ended, sitting in a waiting room of a blood donor centre. If it wasn’t such a clusterfuck of anxiety, emotion, fear and lead hot nerves, I think I could have probably found the whole thing quite funny in its ridiculousness. A contamination OCD-er in a blood centre? Ha! Walking into the centre alone, through the gates, onto blood ground, was a big enough step in itself – I suppose I could have just left it at that for one day, having at least taken that one monumental step closer to freedom from OCD. But, for whatever reason, I carried on right in. I opened the door, trying to ignore the sound of my mind screaming at me that there was blood all over the door handle. I was given a form to fill in – shit, how do I know the woman who just gave me this form hasn’t got blood all over her hands?! Where is the nearest toilet? Am I able to wash my hands somewhere?!

 I look around. Ahead of me is the Post-Donation Area – cups of tea and biscuits abound. This is where donors sit reading magazines and sipping sweet tea, safe in the knowledge that they have just done a good deed for the day, perhaps even helped to save someone’s life. They are quietly smug and demonstrably chuffed with themselves – and who can blame them? Most people don’t give blood – even though we really ought to – so, good for them I say! Feel smug, good deeders, for you have earned it! Besides, at this point, my attention has been diverted to the cotton wool pads that have been fixed to their arms to stem the bleeding. Underneath those pads, they are bleeding. Actual blood. Red, dangerous, blood. I start to wonder if any of the Smug Ones have perhaps come into contact with their own blood. I wonder if they have actually washed their hands – or are they just sitting with blood soaked hands? There is blood on their hands; these people who are now handling the tea machine and biscuits.

 I fill out my form and, there it is, in bold and in black and white. The word. The letters. The three letters that have me sitting in a clammy cold sweat, restlessly fidgeting and scanning every inch of this room: HIV. They have to ask you about it, of course they do. You can’t give blood if you are HIV positive. You can’t give blood if you have had sex with someone who is HIV positive. The list goes on. There is something about a capitalised acronym that gives weight to any term. Think about it, in the movies, you never see FBI officers running around with jackets emblazoned with their logo in lower case, do you? The authority of the Bureau would seem fairly diminished if its officers were forced to wear jackets with “fbi” on the back. No, it’s FBI for a reason – the capital letters tell you to bow down and be afraid, bitches! Be very fucking afraid. Ditto goes for HIV. The capitalisation somehow packs a punch that symbolises a greater power. You need to be scared of this.

 Having filled out my form, I take a seat and fidget my way through the next ten minutes or so. I distract myself by updating Facebook, encouraging people to donate blood if they can. A few friends start liking my status – all but two of them thinking that my status is about the act of giving blood. And in a way, yes it is. But mainly it’s a FUCK YEAH to myself because I am sitting in a blood centre and I am not screaming and I am not crying. I am just sitting (albeit restlessly, twitching like I’m on some kind of come down). A small nurse carrying a clipboard calls my name and ushers me into a side room. I’m wary of touching handles, of holding doors, who knows what the fuck is on them. But I follow her anyway, feeling a little more empowered with every passing minute.

 In the room we go through the form, she explains what will happen. She takes an iron test, which involves having my finger pricked before a drop of my own blood is squeezed into some kind of solution that apparently gives the go ahead for my donation. Suddenly, the table upon which the solution rests becomes toxic, and I am instantly very aware of my surroundings, my sense of danger is heightened and my stomach burns. My eyes are fixated on the cup of solution – how many other people have bled into that solution? And how many have then placed their punctured skin on this table, dripping blood all over the exact spot where my arm is now rested? I look at the nurse, who doesn’t seem to flinch. I am flinching. It doesn’t seem to occur to her that this table could be covered in HIV. Her hands, her pen, that form, this room. We are sitting at a table of blood and she is not even wincing. There is not so much as a disinfectant wipe nearby. Does she even wash her hands between donors?

 As she wraps up, she asks me if I have any questions. I seize the opportunity and ask her if my blood will be tested for HIV (for an OCD-er with my kind of OCD, this is a huge bonus to giving blood – it’s an inadvertent HIV test, which, for someone who is permanently afraid of contracting the virus, is quite a terrifying-but-good thing. At least I will know….). I ask her if they will let me know if my blood comes back as having tested positive for HIV. She looks more than a little concerned at this question and asks me if I am expecting it to come back as HIV positive. Suddenly realising how odd this question must seem to her in this context, I end up muttering something about how I have OCD and how this entire event is a goal of my CBT therapy. Looking perplexed but fairly reassured, the nurse looks at me, nods very slowly and shows me back into the waiting area, where I am placed in a queue to Give Blood.

 When My Time Comes, I shuffle over to the donation station, all the while trying to stay the thoughts and simultaneously pay attention to what is actually happening. A chirpy, chipper nurse introduces me to an odd looking contraption, not quite a chair, not quite a bed. It’s a wipe clean affair, which means that, in theory, it should be clean and disinfected. The thing is, I do not see the other nurses disinfecting the chairs between each donor, so now I am wondering exactly how much blood there actually is on this thing, and how contaminated this whole space is. Underneath the bed-chair, there is a box where I can put my belongings – thank Christ, because there is no way in hell I am putting my stuff on the floor. Shit knows how much blood has been on this floor at one point in time. So much blood in one place, there is bound to have been an accident at some stage – leaking blood bag, needles on the floor, open puncture wounds dripping blood everywhere; the whole room is bound to be contaminated in some way. Ahead of me there are shelves of blood, literally shelves of blood. Boxes of bags filled with human blood. Someone once told me that one in every hundred people* in Britain is HIV positive, which means that – statistically speaking – one of those bags could contain blood that will test as HIV positive. I am sweating. My whole body is on fire. I am fighting every instinct to get the fuck out of there before it is too late, before the contamination ‘sets in’, before the contamination of this bed-chair seeps through my clothes and onto my body, onto my skin and into my blood stream.

 (*I have since learned that less than 1% of the population is HIV positive, which means this statistic is way off. Lesson: question everything.)

 The aforementioned chirpy, chipper nurse sets about trying to find a vein. She gives me the ‘sharp scratch’ spiel (sharp scratch my arse!! It’s a fucking puncture!), and inserts a chunky mother of a needle into my left arm, before hooking it up to the Flimsiest Looking Bag You Have Ever Seen (don’t tell me those things don’t split all the time!). She comments on the speed with which my blood is flowing into the bag – I am not surprised, my whole body is on fire, my blood must be surpassing the speed of light if my thumping heart is anything to go by. I set to work trying to do the hilarious leg lifts and butt clenches that you’re supposed to do during the donation, to keep the blood a’ flowing. I look around and, suddenly, in the midst of the anxiety, and in the midst of feeling like I am literally drowning in blood, I start to feel a little bit smug. Smug because I am here, smug because I am helping someone somewhere, smug because fuck you OCD, look at this!! Three months ago I couldn’t walk on the same side of the street as this place, yet here I am, hooked up to a machine that is sucking out my blood. Sat next to a bunch of other people who are hooked up to machines that are sucking out their blood. Blood, blood, blood, blood, blood.

 I start feeling quite comfortable with the chirpy, chipper nurse. We begin to tread the path of small talk which is a welcome distraction, to say the least. I am feeling more pleased with myself than I have in a very long time, so much so that I cannot resist telling her that my being there is more than my being there. This is a CBT goal and I am kicking its arse (kind of). I don’t think she quite understands what the fuck I am going on about, but I can see that she understands that, for me, this is a Big Fucking Deal. She congratulates me, she smiles cheerfully and I am thankful for this moment. I know that it was a long time coming, and I know that the next time I kick OCD’s arse in this way may be years away, so I am relishing every second of this. I am being a normal person doing a normal thing, just giving blood, just living my life. Look at me. GO ME!!

 “She’s going! Let’s get her upside down!”

 That’s right, I passed out. I wouldn’t be surprised if it was emotion, adrenaline or just sheer relief that it was over. My brain probably just thought to itself, fuck this, I’m taking a time out!

 I walked out of that blood donor centre like a rock star. I sent texts to tell the people I knew would understand. They did, and it was wonderful. I was drowsy from the momentary pass-out, excited at the achievement, and just generally feeling so damn alive! At last I could count myself as one of the Smug Ones! Yes! You can just call me Ms Smuggy Smug McSmug. Then, I did what I always do, I put headphones in my ears and strutted (well, as much as anyone can strut when feeling slightly sick, delirious and a little drunk) all the way home, wearing the cotton pad on my arm with pride.

 That was two years ago. I have some way to go, but I cannot wait to be able to do that again.

 One day!

PS. If you are physically and mentally able to give blood, do consider it. You may save someone’s life. For more info, go here – http://www.blood.co.uk/index.aspx