Choosing Life

Around a month ago I travelled, very bravely from my haven in Scotland to the bright lights and big city of London. This was something of a triumph for me as often even leaving the house can be a painful journey filled with panic attacks and doubt. However, despite my worries, my husband and I made it to our lovely hotel in London. I struggled a great deal around the city, worrying that people might hurt me or I might shout at them or hurt them (even though I know that this is something I would never want to do, the intrusive thoughts still torture me) but even with these worries I managed to navigate around the musty but exciting London Underground (even at rush hour!), wander through the beauty of Richmond Park avoiding terrifying roaring stags and even a trip to the Whispering Gallery of St Paul’s Cathedral (almost 100ft up). These were all things that I never thought that I would manage but manage I did. I wish that my bravery had continued after London but sadly I am writing this having only left the house for a walk around the block once in the past 4 weeks.

The problem started as I developed a really nasty cold on returning home. You see, while away I decided to wash my hands as little as possible as some Exposure Response Prevention but it seems that as my body is not used to a vast amount of germs due to me not going out very often, I came down with the most horrendous bug. I developed the worst cold I’ve had in a long time and then the resulting recovery time has taken me almost three weeks and I still feel dreadfully tired. Herein lies the problem: after being so ill my OCD has gotten worse again to the point where I can barely feed myself or shower without repeating my actions over and over again.

A shower currently takes me three hours, most of which revolves around me putting a product into my hand like shampoo then immediately I feel that it is contaminated the moment it is in my hair so I rinse it. I then feel that I have to wash my hair twice more to get it clean and as the second time I try to wash my hair results in the same worries as the first; you can imagine this becomes a fairly lengthy process. No matter what I do I just end up washing and washing and washing over and over again. It’s torturous. This goes for every item I need to wash – body, hair, face etc so I end up spending three hours, washing and crying until I am so covered in sweat that it was pointless washing in the first place.

I can’t go out as even the merest thought of going out seems to lead to a bubbling panic attack. I went for a walk around the block with my husband last weekend but that was a tremendous struggle.

You see, when you get to this point, it seems like the easiest thing in the world to become more insular, to think that as the world outside feels so scary and frightening; perhaps a life away from it all, inside my home is safest of all? The pain and the fear would surely all go away if I just stay where it feels safe and warm?

But is that a life? Really? Any kind of life? I’ve been thinking about it a lot recently as the longer I spend in my home, the more I feel like delaying the inevitable of having to go out. Curling up in a ball and cowering from the world is hardly a life is it?

The problem is that the idea of even stepping outside my door at the moment seems like the most monumentally terrifying action I could take at the moment and that’s where my OCD has me over a barrel. Stay in, stay safe Fred tells me in my head whereas Brian is telling me that there is a whole world of adventure out there to experience, relax, and enjoy it – except I can’t. I’m trapped in my own head with an angry M yelling at me that I’m useless, pointless and that I’ll never get better and to be honest, at times it is difficult to believe that I will ever get better.

I recently watched National Theatre at 50 and there was a short piece with Benedict Cumberbatch and Kobna Holdbrook-Smith in Rosencrantz and Guildenstern are Dead by Tom Stoppard and Benedict said “Life in a box is better than no life at all, I expect” and that’s effectively where I am, in a box. Admittedly it has a window in the form of social media and my husband but essentially I am trapped in my mind, in my home with my only conversation my husband, various medical people and online comfort in the form of chats with friends over Facebook. It’s a life, of sorts but I shouldn’t be in this box. I’m there because of my OCD. It’s not life. What I live everyday is not life; too scared to touch items in my own home, too scared to venture outside, too nervous to even speak to people I’ve known for the longest time.

I want a proper life. I want to regale my husband with the minutiae of my day, I want to feel the wind and rain on my face without panic and I want to function as a normal human being like I used to. It sounds so easy doesn’t it? But for me and other OCD sufferers, even a walk around the block can be fraught with fear and danger. 

I will get out and about again. My desire to lead a normal life is hopefully stronger than the torturous thoughts in my head so I’m starting small and from the start. I may not be able to sit in a pub with my friends just yet or enjoy the cinema with my husband but I won’t let the fear get me. I may have a way to go but I choose life...and not in the box.

A day like today

Today has not been a good day.

I’m actually writing this on the back of a giant panic attack so I can really describe how I feel at the current time. My OCD has been seething and simmering since the day began and reached boiling point just an hour ago. Even as I’m writing this I am going back to the start of the sentence to make sure that what I have written is correct and I have now done it so many times that I am exhausted after writing a mere three sentences. These are the days where I don’t so much as want to cry for help but bellow into cyberspace; one loud guttural cry of pain and anguish to get it all out of my system. But of course, even crying about my OCD is pointless sometimes.

There are days like this where I find myself reading the label of a bottle of juice one hundred times before I take a sip, where washing my hands turns into a one hour task and where I just don’t know where I want to be. I’m perfectly lucid and to be honest that disappoints me in a way, sometimes I would much rather not be conscious of my OCD but then again, if that were the case I would perhaps be more of a burden on my poor husband.

Physically I’m in very bad shape; the pain from the trapped nerve in my neck is thrumming and groaning, sending shooting pains through my shoulder and arm. Given the level of my anxiety today, the acid in my stomach is churning so badly that I feel like I’m going to vomit. Its days like these when another force in my head comes into play. As well as the benevolent Brian in my head, logical and calm, fighting against Fred, my brain’s OCD health and safety officer – there is also another force that only really comes into power when I’m feeling really down. 

This third force makes Malcolm Tucker from The Thick Of It seem like Kermit the Frog. When I’m trying desperately to drink something or to do anything and I get into a loop I have this voice in my head raging with anger at me and how weak I am that I can’t even sit down without leaping up to make sure that I am sitting on a chair or that I can’t drink some juice without reading the label over and over. “You’re useless!” yells this voice in my head “You’re never going to get better! You’re just a burden and a waste!” and even Fred and Brian cower in my head making Fred even more fastidious, worried that he may lose his imaginary job and Brian just disappears so my brain is filled with self loathing mixed with anxiety and a heightened sense of self awareness. I find it difficult to breathe. All at once I can feel every molecule of my body and yet when I look at things or touch things I feel unreal and that I have no sensation at all. Everything I have tried to do today has ended up with me getting into a continuous OCD loop.

I watch my life as if it were a movie, watching but not really participating while the more substantial part of my personality is dragged to the far recesses of myself, forced to view terrible traumas with lid locked eyes while asleep and mentally poked, prodded and taunted by day. I do everything right; I do my mental exercises, try to resist my compulsions and keep calm but while I look outwardly normal as people pass me on the street, my mind is a seething cauldron of anxiety, neuroses and brutal horrible fears. Suppressing the thoughts just serves to make them worse, more visceral and often more visual. 

While my body is participating in the movie of the day in a calm as watching paint dry way it seems so odd that my brain is so frantic. I crave peace, I crave silence for just a short while at least, I crave oblivion but know that is not the answer.

You see OCD patients on the TV and of course they are racked with anxiety, cleaning and straightening but what you rarely see is the crippling debilitating chain of thoughts that lead to hysteria. You never see the harrowing visual mock hallucinations manifested by one thought generating from another until fear and anxiety collide in your head and all you can do is hide. 

Nowhere feels safe, even your safe place feels polluted and dirty but it is the best your degrading mind can offer given the terrifying circumstances. Nothing feels safe, you feel like you may never feel normal again and perhaps I won't? Everything is a constant struggle. When I eat I examine every morsel that is to pass my lips, I feel simply awful in restaurants if I have to leave food as I don't remember the staff handing it to me (or rather my brain does remember but constantly hassles me to tell me that I'm wrong). Any food in a packet, bottle, packaging etc has to be examined in minute detail to ensure it is sealed and it almost feels as if I have forgotten how to read as I try desperately to read and reread the labels on food and the words dance around before my eyes. My life is exhausting even when I do nothing.

I'm a constant burden to my poor put upon husband but with little movement in my progress I need so much help that it affects our relationship. I want him to see me as a strong sexy beautiful wife but all he probably sees is someone struggling, ugly and contorted in pain and suffering - not exactly attractive eh?

I tell myself that I will get better, that this shouty force (that I am going to call M after the sweary spin doctor Malcolm Tucker) will get tired at some point and I will be mercifully free from it for a while. And I will. I have been better in the past and I am sure that I will again but it is just days like this that are somewhat hard to cope with.

I wanted to write this while I felt the emotions to try and show what it can be like on the bad days. While this post may not be amusing or entertaining I believe that it is important to write even on the bad days. I’m down at the moment and thankfully not depressed. If I were depressed I’m almost certain that I would not be able to write this at all.

I will improve, I will. It’s just that some days are a lot harder than others and sometimes for little reason. I tell myself it is hormones, time of the month or the fact that it is my birthday at the end of the week and I’ll be veering towards 40 rather than being closer to 30. The truth is that there is no reason for my mood today. Some days are just hard and hopefully tomorrow will be better. Until then, I will fight through my OCD today and hope with all my heart for a brighter tomorrow. Keep fighting, I know I will.

...and Relax!

I’m often told that I should relax more, to chill out and not to worry about things so much. “Really? Oh well, yeah, that’s what I should do then” I often say slightly sarcastically “I’d never thought of that! Thank you, really, thank you!” I know that I should perhaps not be so sarcastic but in all truth it actually makes me tenser when people suggest that I should stop worrying. “Thay have no idea what it is like to have these worries going through my mind every second of every day!” I think grumpily but by the same token, I don’t know what it is like to be a relaxed and laid back soul so perhaps I should be a little more understanding in return.

If someone gave me a machine that would give me the option of allowing someone to feel exactly the way I feel, would I use it freely to prove my point? The answer is no, I wouldn’t subject anyone to the tirade of terror inflicted upon me by my barrel of laughs OCD companion Fred as it would be inhumane. So why do I have to put up with it? I decided to try out some relaxation techniques.

Now, before I start, some things haven’t worked for me but that doesn’t mean they are not worth trying so don’t take my experiences as recommendations or advice not to try. I am just a cynical old bugger these days and I have tried things that I have thought might even be ludicrous but have perhaps helped a little. In saying that, I would avoid activities that may want to take vast amounts of cash from you while offering little in return. So, common sense should be applied as always.

The first time I ever really decided with any determination to try a relaxation technique was over a decade ago. I was undergoing therapy and, as I had raging insomnia at the time, I was given a relation tape to try. Now, not realising at the time, my OCD as pretty bad and I felt that despite trusting my counsellor I still wanted to hear what the tape had to say before undergoing sleepy therapy. I mean, what if it told me to take off my clothes and run down the street clucking like a chicken? Would I be hypnotised to sing “Have a banana!” when people mentioned not getting their 5 a day? With a healthy dose of fear I listened to the relaxation tape for the first time on both sides (That’s an hour I would never get back as I was tensely listening to every word to make sure that no hypnotism was involved) and satisfied myself that there was no skulduggery going on, I lay gently on a comfy bed in a warm room and played the tape through my cassette walkman (yep, it was that long ago).

I performed each action that the tape outlined and felt the difference in the feeling of my tensed muscles and relaxed muscles, it was all very soothing. Feeling that I was getting somewhere with this relaxation lark I laid my head back a little too sharply and the curtain behind me, whose pole was attached by blue tack or something similar, fell onto my head! All manner of relaxation wasn’t going to take the pain out of my now bruised head! I groaned (a bit) and swore (a lot) and all the while the lady on the tape is telling me that I am surrounded by comforting warmth and that I am safe. I suppose I was other than the glancing blow from the curtain pole. I sadly took this to be a bad sign and didn’t partake in relaxation for a number of years after that.

Coming to my senses later in life I was advised to learn an instrument as it is a peaceful and wonderful pastime. I agree but it is not so peaceful for flatmates, partners etc so I had to curb that one a little. ‘Yoga’ I was told while at work ‘Yoga works wonders to relax you’ so I tried that.

At this moment I am sadly significantly overweight but at the time I was fairly bendy – I dread to think how I would even attempt yoga these days. Anyhoo, several years ago I booked myself into a yoga class and, not wanting to humiliate myself in front of friends and well as the strangers in front of which I would be invariably embarrassing myself, I went alone. I was so confused at one point on how to do a particular move that the instructor came along and tried to explain to me how to breathe correctly. I tried not to be cynical but Brian in my head was saying “I’ve been breathing all this time, surely I’m doing it right?” whereas Fred in my head was in an all out panic yelling “Have we been breathing wrong all our life??? Have we been doing it wrong? Oh no, it’s going to take ages to find out how to do it right!” and part of me started thinking that perhaps my breathing was really bad and that everyone else was better at it than me which served to make me panic more. I tried the breathing techniques but I became so aware of my breathing that I either stopped and then gasped for breath or I forgot what to do altogether. My mind and body are not designed for concentrating on something I do naturally and trying to pull my body into a complex position. I can reassure you now that, you are breathing fine but with yoga there are specific ways to breathe in order to get the maximum out of the relaxation.

Another problem I had with yoga was that, at the end, the instructor put on some music, switched off the lights and promptly left the room. I lay, on my odd smelling foam mat, on my back on the floor with the chanting music playing in a room full of around 20 people and my brain wouldn’t shut up for a single second.

My first thought was “I’ll bet she has gone out for a cigarette. Man, I’d love a cigarette right now” (I smoked at the time) and then Fred piped up in my head in full volume “Where are your keys? Or your phone? You know they are at the other side of the room. There’s a person over there right next to them who could be stealing them right now? You do know that don’t you????” whereas Brian was calm but pensive saying “What is this music? Do you think that lady is going to come back? How long do we lay here for?” Frankly the whole session became pointless due to my constant worries at the end.

Try Pilates said friends. So I did. I went to a Pilates class and immediately found that I was the least bendy person in the world. At one point the instructor, who was a lovely lady but with very firm hands, came around to me and started trying to edge me into the correct positions – one of which I had to actually be physically helped out of. I’m sure that Pilates is great for some people but, as I had to be manually twisted into some positions, I don’t think it is for me.

When I was unemployed the company working with the Jobcentre to provide courses and help you to get back into employment gave me the option of a relaxation course. Basically it was using a relaxation CD in a large room with other people to help you imagine being in a serene and beautiful setting and there were a group of us in similar circumstances so that was quite helpful. However, the journey there and back, despite it being a mere mile or so, was so stressful that it became difficult for me to attend. When I was there it was very relaxing but then I found myself worrying that I had shouted in the middle of the session or that on the way out perhaps I had insulted someone and I couldn’t convince myself that I hadn’t (even though I knew that I hadn’t) so I stopped going altogether.

OCD has this little trick where sometimes, while crossing a road for example I might worry that I have been run over. Even though I know that I haven’t I start thinking that perhaps I have been run over and that I am a ghost. I’ve talked to a lot of psychologists, OCD sufferers and medical staff who say that this is part of the anxiety – this depersonalisation can make you feel very unreal. If I am on my own this can be particularly anxiety inducing as I start thinking that maybe I am a ghost (even though I don’t actually believe in ghosts) and that no one can see me. It doesn’t help in the modern world where few people make eye contact and, as this would often occur on my way home from the relaxation class, you can imagine that this somewhat cancelled it out.

True relaxation can be hard to achieve and strangely one of the only times that my shoulders sink down to a vaguely relaxed state is when I am at the dentist. Odd I know but I think that all the cleanliness around me and the fact that my dentist is really calming all culminates in some actual periods of relaxation. Obviously when she gets the drill out and starts pummelling away at my teeth it is a different story and it is not a long term solution for me to pitch up at my dentist’s office each day and demand that she lull me into calm.

One thing that I have found that gives me some sort of relief is photography. Don’t get me wrong, I am nowhere near professional and so even calling what I do ‘photography’ is possibly a vast insult to photographers so I apologise but I really love taking photos of wild birds. There is something that eases my mind when staring through the lens (or in my case LCD screen) at a beautiful bird or a scampering animal that few other activities really reach for me.

As well as natural relaxation techniques I have, of course, over the years been driven to taking medical means to relax but to be honest I haven’t found anything that made my muscles feel all gooey and nice but I have found that anti-psychotics have improved the intrusive thoughts and often knocked me out so have served as some way of getting a little release from OCD but as my body gets used to them even they seem to lose their benefit.

With something as intense and constant as OCD it can be difficult to relax I grant you but it is always worth trying some things to get some relief. Whether it is massage that works for you (the last massage I had made me want to shout at the person as it was a deep tissue massage for my tense muscles due to a trapped nerve but obviously experiences will differ!) or relaxation exercises or yoga or Pilates or sitting on a beach listening to the waves; many things are worth a try to achieve that level of melty brain goodness.

So I continue with my quest for relaxation, despite my cynical mind, and while you probably won’t find me in the downward dog position in a hurry, you may just find me behind a camera listening to the bird song and attempting to take amazing pictures. Well, I can hope...

With a little bit of help

Note: This blog is my experiences and opinions and should not be used as a substitute for advice or information from a doctor, psychologist or psychiatrist. If you have OCD and it is not improving, I would strongly urge you to seek advice from your doctor or mental health team.

When it comes to battling OCD, it really is immensely helpful to have someone around you that can support you through the difficult times. For me, I have my husband who for the purposes of vague anonymity I will just call G (although anyone who knows me knows who my husband is but the internet is a big place so I’m being as discreet as possible). 

G has been a true star right from day one. Just before he and I got together he knew that I was struggling with life and as I came to the realisation that I had some deep rooted problems mentally, G gently supported me all the way. He encouraged me to go to the doctor and really open up with what was wrong. I went alone to the appointment as I felt it was something I had to do by myself but when the doctor referred me to a psychiatrist, G was with me for every appointment where he was a necessary presence. We learned together about how my brain was filled with two forces tearing me apart – Brian and Fred remember? Constantly battling for supremacy of volume to keep me safe but not allowing me to take risks.

G stood back and allowed me to make decisions on medication, or rather refusing to take them at first, and he respected my decisions. He gave me his opinion, even if he didn’t agree with my decisions and he was there for me when I finally gave in and took the medications prescribed by the psychiatrist. He patiently fed the tablets to me when I couldn’t even read the packets due to the anxiety. To be honest, I’m really glad that he isn’t a manipulative sociopath or I would be in real trouble!

G encouraged me to go for therapeutic walks or to meet up with my friends if I was up to it and all the way he helped where possible. 

However, when loved ones, family etc get into the habit of dealing with your OCD, something quite unexpected happens. Often you can start relying on the person too much and after a few years, this started to happen to me. You get into a vicious circle where you may feel unable to cope with certain tasks so your partner/friend/family member etc does it for you, to save time perhaps or because you have had a panic attack. The problem is that the next time you come to do the same task, it can feel easier to let your carer do it for you again and again and again. For example, if you find it difficult to do the laundry it may feel easier to let your carer do it, but if they do it for you regularly you come to rely upon them. This feeling of reliance, while comforting, will invariably lead to you feeling vulnerable or that you have little control over things and this can lead to depression. Then when you come to do the task again, it has been so long that the fear rises again and you may feel that you can’t do it which raises your anxiety levels and makes you feel more vulnerable and depressed and so the cycle continues.

If you allow your carer to do things for you, you may also unknowingly start to impress your rituals on your carer then you pull them into the loop which in the long run will lead to further complications. Believe me, I’ve been there. G is so kind and obviously doesn’t want to see me in acute distress so he often does things for me which is incredibly caring but tough love is often necessary to help me with my therapy.

As well as my medication, I undergo Cognitive Behavioural Therapy on a regular basis. This has been a mixture of talking through my various rituals and finding ways to tackle them. I have a truly wonderful psychologist who has helped me immensely, strangely by being quite strict! 

Part of my therapy is something called Exposure Response Prevention. This is fairly horrid but actually very effective. Say for example you worry that you haven’t locked the door when you go out. The therapy for this, in my case, is simply (well, I say simply but as you can imagine it can be ridiculously hard) to walk out of the house, lock the door and walk away from the door without checking. At this point my psychologist usually has to practically pull me me away from the door and away from my home as I find it immensely stressful. By this point I can often be hysterical, panicking, feeling sick and generally concerned that I’m going to die horribly on the spot. It sounds horrendous I know but it actually does work. 

On meeting another psychologist over the years he removed his shoe and said that if I licked my hand (which I was terrified of doing at the time, even if washed. I was eating things like crisps with a fork from a plate) he would in return lick his shoe to prove to me that things are very rarely as dirty as I think they are. With a great deal of reluctance and tears I eventually managed to lick my hand and he, as promised, licked his shoe to show me that he was willing to do anything he would ask me to do. He was fine despite claiming that he had walked through some really manky areas on the way to work!

Having a supportive carer is very important but what is more important is their willingness to stay strong and not give reassurance, even when I’m sobbing my heart out and begging for reassurance and that is an extremely hard thing for someone who loves you to do. G does try to be strict but at the end of the day he can see how terrified I am and how much distress I’m in and it can often be too much for him to bear. It is a hard task for anyone but one which must be undertaken if you want to see improvement.

It’s terrible in a way, I find myself begging “Please. Did I lock the door? Please?” but the problem is that even if G reassures me, it is never enough. It doesn’t feel right, I feel like he is confused and perhaps didn’t see me lock the door properly. Maybe he is wrong? What if? What if? So I ask for reassurance again but even if he replies again patiently that the door is locked, I’ll still feel like I need to ask him again and again and again until it feels ‘right’. But of course it never is.

As you can imagine, my dear husband deserves a medal as, at my worst stages, I was like that about everything. Everything even in our home felt dirty and the space in which I felt safe became smaller and smaller until the bed was the only place I felt even remotely safe. It can be incredibly hard to cope through periods of illness like that and my lovely G did so because he knew that I am a fighter, that I love him and would do my best to cope during the intense therapy so that we can have a life together. A proper life, not just a life that revolves around my rituals.

Apparently it is entirely common for a relative/friend/partner to get somehow involved in the rituals as it is easier and less time consuming but it is a cycle that must be broken to gain back any semblance of life.

The most important step is to realise that you are in the cycle in order to try and break it to improve. G finds tough love hard but he knows that he’s doing the best for me and I want to be back to my usual feisty self.

Support is vital during the suffering in OCD but try and make sure that whoever is supporting you isn’t helping you too much as this can cause issues too. You can fight back against the intrusive thoughts and I know how easy it can be to rely on someone too much but remember that the way to get better is to be strong, even when you feel you can’t be.

Looking on the bright side

My previous post was somewhat downbeat, probably because I only managed to get around an hours sleep last night due to a ridiculously trapped nerve in my neck that has been tormenting me for months. With that in mind I thought that perhaps I should write about the lighter side of my life.

OCD can really drag you down and of course the often resulting depression is difficult to get out of. Frankly last week I was in a very poor state mentally and before I decided to start writing a blog again this week, I had spent most of the past month (or maybe more) in bed in agony with my neck. As I mentioned before, a life unlived is a terrible thing so even though I sit at my desk with what appears to be the equivalent of red hot needles ground down to sharp shards of sand (but still just as pointy) surging through my neck and shoulder; I am determined to show that while my OCD may have destroyed parts of my life, it may just have changed others in a slightly more positive way.

Again, I can’t speak for everyone with OCD, I merely offer my own experience of the disorder but I find that, without OCD I may not have made certain decisions in my life particularly regarding my career...

Before my ten year career as a software tester, I desperately wanted to be a writer. With my whole heart. I admit that I may have a tenuous grasp of grammar (you may have noticed this) and I’m definitely not as eloquent or articulate as someone like Stephen Fry or as skilled in the art of writing as Douglas Adams but I had two things that had never failed me before – obsessive behaviour allowing me to write for long periods of time without rest (and unfortunately for you dear reader a tendency to ramble on) but also enthusiasm to get my thoughts down. I have a palpable urge to write, I always have, even as a child. While my scribblings in my youth may have been childish and naive (and probably still are!) I wanted nothing but to write as many books as my imagination could spew out and the ideas were, and still are plentiful. Even as I write this I have three novels in progress that I have been crafting for some time, several other ideas, some short story ideas, a poem or two and a fantastic (or so I think) idea for a Doctor Who monster! 

Unfortunately, bills have to be paid and unless I managed to craft my ‘magnificent octopus’ (as described by Baldrick in Blackadder) and make money then I had to have a career that I could rely on and one that I enjoyed. I never gave up writing, as you can see, but I had to create a career for myself in the meantime. I’ve never been in writing for the money or fame, merely to entertain people and hopefully raise a smile or two, but you do need some money to live so I had to be realistic.

After a few years into a computing degree I realised that frankly, when it came to software development I was hopeless. I could write software and knock things together but I wasn’t very efficient and the first time I actually wrote some code that didn’t just display ‘Hello World’ I was crushingly disappointed. Having spent a great deal of time pulling together a substantial amount of COBOL code for a piece of coursework I spent most of the night wrestling with compiler errors galore the night before it was due to be handed in (yes, not an ideal scenario I grant you) and almost sobbing at 9am the next day. A friend of mine came into the computer lab where I was just about tearing out my hair and he said chirpily “You’ve missed a full stop...there” and he added it promptly, selecting compile. I can’t remember exactly what the compiler said. Whether it said ‘No errors found’ or ‘Code Compiled successfully’ or ‘This works but you suck!’ (unlikely, although I did suck) I wanted to simultaneously kiss everyone and punch my fist through a wall – it was difficult to really grasp what emotion I was looking for. The wonderful news was that my pretend ATM program worked! But it was terrible. So much work had gone into this software for it to do so little and at that point, whether I was tired or whether I just realised that software development wasn’t for me, I was soul wrenchingly disappointed.

I discovered my love for software testing quite by accident and I strongly believe that without my OCD I wouldn’t have been anywhere near as good as I was at software testing. I’m not saying that I was amazing; I was pretty good but not astounding. I’m also not saying that you have to have OCD to be a good software tester but it did help a great deal. 

With the way my brain works I found that my attention to detail was exceptional and when going into testing a piece of software (mainly mobile phone games and then later web and other interesting pieces) I could see the layout of the software laid out in my head for easy access. My visual brain allowed me to navigate around areas of the game in my head and work out intriguing and intricate ways to really wreck the heck out of them. And I did. I could take games that had been certified and just needed a quick check and reduce them to rubble just because I thought about things in a slightly different way to the original tester. One of the developers I worked with used to call me the ‘evil tester’ as I once spent several hours into the night working with him and the producer on a bug that only I seemed to be able to recreate. 

I would work tirelessly, I spent many hours late in the office helping to seek out bugs while learning to juggle oranges or playing chess badly (in my case) with my boss while waiting for builds. I was determined that once I started a job, it would get finished no matter what time it was. I was completely bloody minded when it came to getting things done and managed to keep going even through long shifts. I was sent to America to test a game and I would spend all night testing, get a few hours sleep then back to it in the morning. I absolutely loved my job.

As part of my daily obsessions and compulsions, they rely on a good eye for detail and due to the fact that my brain conjures up the consequences of everything I say or do before I say or do it, as you can imagine this pretty much a perfect fit for software testing. I have a healthy dose of curiosity too so when something wasn’t working, I would endeavour to find out why then try to give the developers as much information as possible. I really hope that I made their job a little easier, even as I was making it harder.

My point is that, without the way that my brain works, I probably wouldn’t have become a software tester. I may not have stared at that flashing cursor on my COBOL program feeling that I had done so much work and that it looked so small in comparison. I didn’t get the satisfaction making something work, I got it from taking software whole and breaking it down into component parts to see if I could break it. Without my job I also may never have met my husband whom I adore and who has really been my rock. 

Nowadays I can only work from home until I build up the strength of mind to be able to work in an office again and there are very few software testing roles out there working from home. So, a few years ago, lonely in my flat and desperate to be part of the workforce again, I turned to the one thing that I had loved all my life – writing.

I wrote blogs, I wrote reviews, I wrote product descriptions. I wrote anything that would get people to see what I was capable of and give me a job and slowly the opportunities flowed in. At one point I was doing so much work as I just couldn’t say no and I had to reduce my workload but I got the chance to write about so many interesting things and there are new challenges every day to look forward to.

Again, because of my OCD and the curiosity and ideas that would pop into my brain, I’ve been able to create so much and enjoy doing something that I have always wanted to do. Perhaps if my mind didn’t work the way it did, who knows what I would have ended up doing career wise?

Oh, and the odd and exciting dreams I have! Well, that’s another post all of its own!

It’s not you, it’s me

OCD can be a very lonely condition as a lot of the churning and writhing goes on in your brain and so unless you vocalise it (or someone notices compulsions) it can go unnoticed for years, even decades in my case. Even people who have known me since childhood would probably say that they thought that some of my behaviour was odd but didn’t realise I was anything other than anxious. As I didn’t know what on earth was wrong with me for a long time, I kept it to myself, like a dirty secret. Even when I found out that what I was suffering from was Obsessive Compulsive Disorder I still lived under the vague illusion that I could control it and that I was just being fastidious in my rituals rather than realising that the compulsions were beyond my control.

Finding out that what I had was OCD was a real game changer for me. I knew what was wrong so I could fight it, right? I found that sometimes even giving something a label doesn’t always affect the way you think about yourself but it did affect the way other people were going to see me. Instead of being ‘quirky’ or ‘unique’ or ‘a bit mad’ (as people had labelled me in the past) I now had a mental health disorder and for some people that can be a big stretch to understand, accept or realise that I can still have a sense of humour about things. I suppose in some ways it is not surprising, if you have always been completely mentally healthy it must be difficult to put yourself in other people’s shoes to that extent. 

When I first decided to just tell people about my OCD, no matter what the situation, I was prepared for people to approach it in different ways. I often get the comment “Oh, your house must be so clean!” or “I’m totally OCD too” which I suppose is a way of trying to relate to the condition based on scenes in the media, books etc but in the same way that being bipolar isn’t just about being high and low, OCD is a complex condition and unfortunately one that it is difficult to convey to people accurately. As a small example, I usually say to people to imagine wondering whether they had locked the door and not only magnify the worry but also imagine that at the same time you are having terrible thoughts and images about the consequences of leaving the door unlocked. Then you go back and check the door but as you are walking away you don’t think you did check it and repeat. There are lots of different aspects of OCD and checking is just one of them and there’s no solid way of making someone feel what it is like even though a lot of people sit somewhere along the OCD spectrum. When checking things, organising things, worrying excessively or having distressing intrusive thoughts etc interferes with your day to day life, it is then time to seek help.

Last year, I had a brain scan done as part of an OCD study at a very reputable organisation and after undergoing some tests (my husband also took part as a control subject) the gentleman in charge of the study sat down with us for about 6 hours and went through the results and showed us the scans, explaining carefully what it meant. These scans confirmed that my brain activity is exactly in line with what has also been seen in other OCD patients and as strange as it sounds, I completely broke down, in relief more than anything else. The reason why I wept was because, at last, I could show my husband and other people exactly what my OCD looks like and the mechanism at which it affects my brain. Before that, it had only been something in my head that I couldn’t visually show to anyone or prove to anyone and that was frustrating as some people can think you are exaggerating or being silly but to have it there on a screen (or a projector in this case) was nothing short of relief for me. 

Since I had my diagnosis and started telling people, many people start to link up my behaviour – such as touching things with tissues or not being able to remove dead flowers from a vase in the office or washing my hands frequently – with my condition. Some people were surprised to realise that on certain occasions though my decisions were odd they later they found out that I made them due to worries of my OCD. A lot of people thought that it was a risk employment wise telling people I had OCD but as a freelance writer working from home, as long as I hit deadlines then my OCD rituals are no business of the outside world (other than my husband).

Over the past few years, as my condition worsened and depression set in I retreated to bed and in the past few years I can probably count on my hands and toes the number of times I have ventured out with friends. When my husband was at work I’ve felt incredibly lonely and more or less lived online and to a greater extent I still am but I’m trying to get back to some sort of normality, which is why I’m writing this now (or obviously when you are reading this I will have already written it so it will be in the past). I often worry that people think my husband is keeping me captive and only allowing me access to the internet as I’ve been so reclusive when I used to be so social and bubbly before. In a lot of ways, I want to be more social but to be honest I’m terrified.

I’m terrified of ridicule of my condition (I can cope with the gentle ribbing I get from my good friends) but it’s the out and out look of disgust on some people’s faces when they see me going through the routine to take my daily medication if I am in a cafe or a shopping centre. If I have to stop and check the floor to make sure that I haven’t stood on a syringe that I am always panicking that I may have stepped on, people look at me baffled and leaving a restaurant table to go to the loo and returning 20 minutes later as I struggled to wash my hands is incredibly hard for me.

I wouldn’t put anyone through OCD, ever. It is like that scene in a Clockwork Orange where Alex is strapped to a chair; eyes lid locked and forced to listen to music while watching terrible images. In my mind, I am Alex, forced to sit through terrible horrifying thoughts as my internal jukebox plays on. I wouldn’t subject anyone to that but I would very much like people to try and understand what it is like and accept the fact that sometimes I’m going to need to check something and you may not understand the reason why.

Sometimes, once you have come to terms with something that may go on for the rest of your life, you have to wait for other people to catch up and I understand that it is difficult for people to grasp if they don’t have it. I’m always open to (sensible) questions about my OCD, I can’t speak for everyone with the condition but I know what goes on in my mind and after discussing it with many mental health professionals, I have a pretty standard OCD way of thinking so you could say that I am normal for the high end of the spectrum of OCD.

I’m used to the condition and other than here I try not to let OCD be me, it is part of me – Fred in his hard hat with his moustache working hard on his Health and Safety criteria in my head – but I try not to let it become me if that makes any sense? My husband has been with me all along the way on my journey from confusion to diagnosis to treatment and he has become something of an expert in OCD himself. 

I don’t expect anyone to fully understand why I am anxious about numerous things but the next time you see someone struggling or having a panic attack or even finding it difficult to cope with depression weighing them down – be more understanding and spread awareness of mental health issues.

So it’s really not you, it is me but if I try to be more understanding of you, will you do the same for me?

Oblivion

Having two separate forces arguing in your head is no picnic, believe me. Every single action I take in life is followed by Fred yelling “Don’t touch that!!! It’s poisonous!” or “That manhole 500 metres away is dangerous, you are right near it!!” (as well as being irrational, Fred has no concept of distance I might add). All the while Brian is sitting there saying “You can’t even talk to this guy! He’s a complete moron, you are nowhere near any danger, chill out” which, as you can imagine is pretty much what everyone else is saying to me in real life. The understanding of other people when in situations of high anxiety is crucial as people saying “You’re mental, that manhole cover is miles away, why the hell are you even worrying about it???” is really not particularly helpful. My husband has the patience of a saint and is likely to ignore these people and gently but firmly reassure me once then try to coax me far away from the manhole. My husband is truly wonderful and I will devote an entire post soon with what he has to put up with while somehow still continuing to love me and how he frankly deserves a medal.

Anyway, in the past when I didn’t know what was wrong with my mind I tried running away from it which is more or less pointless as it was my mind so I sought other ways to quieten down the voices of Brian and Fred. The one way to do that seemed to be alcohol. Big mistake.

When I see alcoholics I tend to think, there but for the grace of God go I because, to be honest, without my husband I may not have sought medical and psychiatric help for my OCD and I may well have considered drinking myself into a stupor every day just to get away from the anxiety. I know that sounds quite dramatic but I assure you that things were so bad at one point that I just drank and drank and drank, hoping and praying for oblivion. The thing is that you do achieve it, for a while, but at a price. OCD is particularly fond of alcohol because, as much as it knows that you are going to dampen it down for a short while, it is going to spring back to life at the nearest opportunity and bounce all over your head for at least 2 days afterwards. Oh the joys of rebound OCD(!) 

You see, when I’m drunk, I don’t think, not really. I mean, I have the voice in my head that keeps on yelling “Wahey! Look at how the lights...shine...no, they...they really like...shine!” etc but Fred and Brian are coerced into some sort of catatonic state where neither can be bothered arguing. In all truth, for a short while, it is fantastic. I can completely understand why some people drink to excess. When I read news articles about Paul Gascoigne, who has OCD too, in a way I can see what he may be trying to battle. Alcohol is often not the problem, it is a way of trying to find a solution and unfortunately it is a pretty bad one. I don’t know whether Paul Gascoigne is drinking to quieten down the forces in his head but chances are, as he has OCD, it may well be what he is trying to do. To a certain point I completely understand; there have been times where I would have gladly swapped my angst ridden life for a bottle of something potent enough for me to, if not enjoy myself without worry, but to pass out and not have to cope with anything.

The funny thing is that I hate being drunk, OCD likes control and fears uncertainty so when you are drunk and have little sense of control it is both euphoric and terrifying – like standing at the top of a huge cliff, teetering over the brink.

I chose to take the route of psychiatric help and medication and due to the medication I’m on, no drinking alcohol for me. Plus it is a depressant which makes me laugh and joke with people for one night but then roll up in a ball on the floor and cry for two days afterwards as Fred and Brian head to the boxing ring to slug it out (yep, they have a boxing ring in my brain, never say I don’t treat my non-physical invented mind dwelling entities well!).

The first medication I took for my OCD was, as expected, good old SSRIs (Selective serotonin re-uptake inhibitors – anti depressants). It is thought that SSRIs help as it is postulated (there are a lot of theories in OCD but it is difficult to pin down exactly what causes/helps OCD. Another post darling, another post) that lack of serotonin has something to do with OCD. Serotonin is a lovely little neurotransmitter that is thought to be linked to feelings of happiness. If your brain chemistry goes awry and depression occurs, SSRIs help your brain to retain more serotonin and theoretically make you a happy bunny. Not at first, you don’t take them and they make you feel high as a kite, they build up over time. 

The first time I took SSRIs, I’m not going to lie to you, I felt like I had been rolled in cotton wool then someone had put bubble wrap around it and rolled me down a slight incline. Everything did feel a little fuzzy, not in a euphoric way, just in the way that I felt like I was in a bubble for a while. Many people say “Oh no, I don’t want to take tablets and feel like a zombie!” and the truth is that I didn’t feel like that but for a while it was sort of nice not to have Fred and Brian screaming in my head. Then, after a while of feeling calm and serene, I genuinely started to miss them. I spoke to one of the psychiatrists dedicated to my case and explained that I didn’t feel happy or sad, just ‘meh’ and he replied “How do you think most people feel?” and I was sort of offended to be honest. Then I went for a walk with my husband and we discussed it and I thought it over and came to the conclusion that perhaps that is how most people feel a lot of the time.

Anyway, SSRIs gave way to Tricyclic antidepressants (which helped for a while but made me have scary but vaguely cool auditory hallucinations) and then back to SSRIs and a heady mix of surprisingly effective anti-psychotics (I’m not psychotic, don’t worry but the medication is designed to calm down the voices in the mind when psychotic episodes occur therefore when you have chatter in your head they do help to calm them down). At many points along the way I refused to take medication, fearing liver damage, mental damage and some of the side effects sound terrifying but then after years of the constant haggling in my head and after becoming agoraphobic and then bedbound with the OCD, I more or less offered to take anything anyone would give me to have a life.

And that’s the stark truth. OCD robs you of life. It stops you from doing things that you want to do because you are too scared to even think about them. You get to a point where you are sitting in a room that you have spent the last three months in, crying, lonely and knowing that you are hurting people close to you by shying away from the world and their help because it is just too hard worrying even more that you are not living any semblance of life. You find yourself utterly terrified of dying, but in some ways not wanting to live and oblivion is never the answer. 

The definition of oblivion is as follows:

    “The state of being unaware or unconscious of what is happening or the state of being forgotten, esp. by the public.”

This is not life, it’s not the life anyone should ever want to live.

Short term oblivion may sound wonderful but in truth, it doesn’t take away any of the problems in life and the only way to do that is to fight. So I fight, every day, Fred is constantly on alert and posting photographs to the social media site of my mind telling me what I have and haven’t done to try and bring me down and I jump on Brian’s back and we carry on beating down the wall of Fred’s office, leaving post it notes all over his computer that he’ll have a terror of a time trying to remove. We use all his staples and carve offensive words into his desk. Fred will not win and while I often crave oblivion there is no life in it.

There is no cure for OCD at the moment and perhaps there never will be but there is treatment, some that works and others that are not so effective depending on your situation but worth trying with advice from your doctor or psychiatrist. Life is worth it, I may have had the past few years of my life frittered away in misery and suffering but I have a husband who cares about me who wants me to be happy. 

The treatment for OCD can be hard to go through but believe me that the alternative, not living your life, is much worse.

Greetings and welcome to my mind...no really, you’re welcome to it

Where to begin! I am writing this as I simply cannot bear the life that I live in the tyranny that is my OCD. I don’t want to complain (although I fear that I might, quite a lot) but I do want to show others what life is like living with Obsessive Compulsive Disorder. This cruel disorder has robbed me of the last few years of my life and in revenge I’m going to do it – I’m going to write a tell-all feature on this nasty little entity that lives in my head! Although, to be fair, this little horrifying creature is actually constantly terrorising me because it is a scared, frightened wee thing that merely wants to keep me safe. I need to look behind the curtain Let me explain...

Your brain (yes, your brain and pretty much everyone else’s) has a great little feature. It is postulated that the brain stem helps you deal with fear. This is handy when crossing roads, watching out for tigers in undergrowth and ensuring that you run, fight or freeze when danger is nearby. The brain stem says “Oh no! Something is terribly wrong, need more information!” and sends out signals to other parts of the brain which checks to confirm danger and then to another part of the brain to decide what to do. Once a decision is made the brain stem is either given the “All clear! Go back to your duties” or “Everything is going wrong!!!! Take action!!” at which point the brain stem helps to send out a cocktail of chemicals in order to help you cope with the aforementioned danger. This all happens quite instantaneously and all you may know about it is that you may think ‘Is that tree going to fall? No? Ok’. Interesting huh?

Well, my brain does all that right up to the point where it makes a decision. It can’t. Something happens and my brain doesn’t send back information to the brainstem to tell it to stand down and everything is ok. Therefore, my poor little brainstem thinks that there is something wrong – All. The. Time. As I described earlier, without confirmation that everything is okay, my brain stem throws its toys out of the pram and pumps lovely chemicals into my bloodstream telling me that I need to run, or fight or simply stay in one place and sob my heart out. Obviously in a really dangerous situation this is all very well and good but when I am trying to wash my hands and my brain is saying that something is wrong I just end up continuously washing my hands until it feels ‘right’ (which sadly it rarely does so I settle for just about ok). This is just the chemical bit but as you can imagine, with those chemicals soaring around my body on a fairly regular basis I feel generally highly anxious then enormously tired from reacting. See, I’ll bet it makes more sense to you now.

You see, everybody has odd thoughts, everybody thinks things such as ‘did I leave the gas on?’ or ‘I could just kick that person up the bum!’ or ‘I could just jump on that car bonnet for a laugh’ etc and most people shrug them off. Many people with OCD can see those thoughts as somehow meaning they are a bad person or that because they have thought it, they must have done it. For me, it is constant, every thought I have is analysed by my brain, and every time I go out I am scanning for danger and staring at people in the street terrified that they may suddenly attack me – despite the risk of being punched or mugged in broad daylight on a high street being fairly slim.

Suddenly while trying to get off a bus I may accidentally knock into someone and apologies will be made and all should be well. But it isn’t. I then get intrusive thoughts telling me that I have punched the person and that I am evil. So I think about the situation rationally and I replay it in my head – accidentally bumped into person, apologised, got off the bus. All fine. Then my brain tells me that I am just telling myself that to cover the horrible person that I am and this is when the anxiety really ramps up. An image pops into my head of me punching the person. It’s an awful image and it causes me immense distress. I would never want to harm anyone and i tell myself that firmly; what possible reason would I have to punch an innocent person? By this point my OCD has me in its grip and tells me I have definitely caused harm and the image in my head reaches a frankly horrifying crescendo by which point I am more or less convinced that I have hurt the person. Even if I can see them chatting away on the bus, perfectly fine, the image in my head tells me otherwise.

With all this going on I eventually stopped going out. That’ll teach it thought I. But no. Avoidance is possibly the worst thing as it confirms to the old brain stem that there is danger out there lurking away in the darkness so everything escalates. I ask for reassurance from my husband and he, having witnessed said collision on the bus, assures me that my rational picture of what happened is true but still my brain eats away at me, telling me that the police are going to come and get me because of me punching the person. I literally can’t get it out of my head. To be honest, this is one of the milder incidents.

I am a gestalt entity really; I always have been to a certain extent. The way I thought about things always felt a little weird. For a while as a child I thought that somehow because my brain worked in an odd way that somehow I was special. Not in a “You’re a wizard Harry” sort of way but I always had two strands of thinking in my head. Over the years I realised that I don’t have multiple personalities, but I do have two controlling forces in my head.

OCD is peculiar as you know full well that doing certain things is not risky but the OCD part of my brain likes to constantly tell me that doing just about anything will cause me harm. I end up arguing with my own mind. I have almost personified the two parts of my brain; strangely I have made them both male for some reason despite being a female myself. Odd but just go with it.

One controlling force in my head is my OCD, I call him Fred. Fred is a health and safety officer. He wears a yellow hard hat at all times and for some reason has a bushy moustache. Fred is constantly on the lookout for danger and he sees danger everywhere. Like the hard worker that he is, he reports his findings promptly and sounds the alarm when he thinks there is any danger. Which is always. He makes Arnold Rimmer look easy going.

The other force in my head is a more rational entity. I call him Brian; not only because it is a slight anagram of brain but because this part of my mind works a little bit like Professor Brian Cox - (certainly not intelligence wise as Brian Cox is far more intelligent than I will ever be but because of his cool rationality and curiosity). This non-OCD rational part of my brain, Brian, is the thing that steps in to tell me that the Fred is being irrational and that I should not believe Fred. Essentially this part of my brain in theory allows me to realise that like the goblin king in Labyrinth “You have no power over me” (mind you, David Bowie can have power over me any time he likes...however, I digress).

So, Brian and Fred live in my head, constantly arguing until it is honestly difficult to know what to think and frankly it is exhausting. From the moment I get out of bed in the morning, Fred is telling me not to touch anything in the room in case it is poisoned whereas Brian is soothing me and saying that everything is fine. In the way that some people have their morning cigarette, I get a good old dose of adrenaline and cortisol and a whole load of other chemicals that will just screw up my digestion and make me feel like I should run around the block, if I weren’t scared of being attacked or shouting at someone in the street or running in front of a car.

OCD is different for everyone I’m sure but I think I need to try and express how it feels to raise awareness of this really miserable disorder. I’ll try and be entertaining and I may use visual aids to explain my plight but people need to see that OCD isn’t just about someone washing their hands or arranging things in a particular way (a part of OCD that I actually don’t have but my lovely husband is prone to). The thoughts that appear in the head of someone with OCD are often so terrifying and frightening such as that someone close might die or that having something on your hands could cause harm to others and the handwashing or arranging things is a frail attempt to exact some sort of order on the world.

My house isn’t nice and clean, I don’t arrange my sock drawer in order of colours and if you knock a picture frame to one side and ask me if it bothers me I can tell you that it doesn’t. My OCD focuses on whether things are off/locked, worries of harm and fears that things are poisoned.  The things I have written about today are my understanding of my disorder from what I have learned through researching it and these are my experiences and opinions, not medical facts but information gleaned from several sources through the course of my illness.

OCD can manifest itself in different ways – it depends on your experiences, possibly genetics and how you live your life. Lastly, the fact that my thoughts often distress me is, I’m told, a good thing as enjoying them would frankly mean that I had much bigger problems to deal with. I’m not a danger to myself or anyone. I live with a constant conflict in my mind and the one person that suffers the most because of it is me. You can’t run away from your own mind.

So there. That is my introduction to the contents of my mind and my unbearable feeling of fear. I hope that helps you to understand that OCD is more complex than it is often portrayed.