The Butterfly Effect: The Thyroid and Mental Health

butterfly

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

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Dear Mr Prime Minister

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Dear Mr Prime Minister,

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

To put this into a little bit of perspective.

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

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

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

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

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

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

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

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

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

I have wanted to die.

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

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

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

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

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.

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.

Beauty and disease in autumn

autumn

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