It’s in the jeans

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.

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The Dread

Sands of Time

The Dread is a feeling that sits, like a piping hot pool of thick tar, just above your belly button, smack bang between your ribs. It sits there all day, pulsing, contracting, expanding, brewing. It makes me afraid to move, afraid to think, it makes me fear the day ahead. Something, or everything, or nothing at all.

It will begin from the moment I wake up, The Dread. And it will stay with me all day, just lounging around at the base of my ribcage, not really doing much except making me feel afraid. It transforms my belly into an engine-room of panic. Everything feels like an effort, everything feels like a threat. I find it almost impossible to concentrate on anything, on anything but The Dread. Each breath is limp and shallow, I feel lightheaded and slightly drunk, drugged. Tea doesn’t taste the same, it tastes of Dread. Food doesn’t taste the same, my mouth has gone numb, and the sensation of semi-chewed sludge as it lands on my stomach makes me feel sick. I wish my body would tell me what my mind does not seem to know.

The Dread is like radiation. You can feel its undulation sweeping aggressively through your torso, rhythmical waves of fizzy alarm. The air that surrounds me begins to condense, shrinks and compresses against my chest, soft but firm, gentle but unrelenting, a pressure pad, with flesh of steel. My lungs shrivel up, like dried fruit, they are evaporating in the heat, for they too are afraid of the feeling.  Breathing is strained, my chest is so tight that, with each inhalation, air only goes so far before stops at the base of my neck, there in the little pool that marks the cross-roads of the collar bones, that suprasternal notch. There is a thick and dense plug there and, despite my efforts, I can’t seem to swallow it away. And when I do swallow, it is a short-lived relief, because my mouth soon turns back to sand, drying out almost instantly. My lips are cracking and are sore to the touch.

I begin to wonder if the blood has stopped pumping around my body altogether, because every single extremity feels disconnected, so much so that my hands tingle. I wonder if the blood is just floating, aimlessly, not really on its way anywhere, just hanging around in a lull, waiting for The Dread to go. Like children, taking care to tip-toe around the house so as not to wake their sleeping parents upstairs, softly softly it goes. It daren’t disturb the sleeping beast. My eyes are heavy and they want to shut down for a while. But, even if I could lie down, I wouldn’t sleep. The Dread throbs like it is its own heart, its own life, existing in its space, independent of me.

Sometimes, I feel like my body and my mind hate each other. They don’t seem to work together, they seem to work against one another, constantly keeping little secrets from one another. Each one seems to work so hard to make the other feel afraid. My mind tricks my body, my body tricks my mind. It’s one big game of terror chess. I convince myself that my body can sense something that my mind cannot, although I know this is not the case. There is no sixth sense. And yet, my body knows something. Death or disease, or some almighty fall that is waiting. I will fail today, my body already knows.

It’s about eggs.

eggs

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.

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.

I have OCD, this is my blog.

obsessive-compulsive-disorder

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.