Please share this on social media – let’s end the ‘joke’.
Photo post by @dr_ashutosh82.
Trigger warning: blood, toilets, HIV, contamination
It’s been a long time since I have written about OCD. A lot has happened since then. I have joined an OCD support group, I have been to see the best OCD specialist in the land, I have been put on a transition to new meds. In OCD land, I have been exploring new territories, beyond those confined to Middle OCD Earth. There are a few posts in the pipeline, posts I have been wanting to write for some time, but have just had too much in my mind to even bring myself to put pen to paper. Or fingertips to keyboard. Anyway, today something happened that I have thought of little else all afternoon but getting myself back to my trusted blog.
Half way through a car journey that involved a long motorway and some coffee, I found myself at a motorway service stop, heading for the toilet. Now, anyone who knows what contamination OCD is even remotely like, can understand that the prospect of using a public toilet can be daunting at best, fucking terrifying at worst. I once consciously dehydrated myself for some nine hours at a music event, because I could not bring myself to go and use the toilet facilities (in my defence, they were porta-loos). There is a plethora of things that can go wrong in the OCD mind when faced with a public toilet. There are the many door handles, the floors, the bins, the sanitary towel disposal units, the toilet seats, the toilet roll holders (yuk!), the toilet roll itself (did they store any spare toilet rolls on the floor, or perhaps on the sanitary disposal bin?), the toilet brush, the inside of the toilet bowl, the underside of the toilet bowl, the sink, the taps, the soap. EVERYTHING. Contamination potential is off the scale for me these days (although being able to go into a public toilet is an achievement in itself, it was only several years ago that I just could not use them). As you can imagine, there is some Poirot-esque inspection of all facilities before I can even bring myself to use any toilet.
Initial inspection over, and then comes the indignity of the act itself – to be blunt, I am the queen of the Public Toilet Hover. For as far as I have come, I am yet to be able to bring myself to come into contact with the toilet itself, I don’t care how many times an hour that chart says the toilet is inspected. Unless you are bleaching the shit out of this place after every single user, it’s not clean enough. Who am I kidding? Even if you sprayed the whole thing down with industrial strength bleach, it’s still not going to be clean enough. So off I go. Feeling pretty pleased with myself (no contact with the seat/bowl, no splashing on my skin of any kind from the toilet bowl – apologies, graphic I know, but pee does have a tendency to splash!), off I go to pumice my hands clean with soap and hot water.
I notice a small speck of what looks like tissue and, sure enough, it’s got blood on it. At least I think it’s got blood on it – I don’t know, but I can’t be sure that it’s 100% definitely not blood, so I am going to go ahead and assume that it’s blood. And contaminated blood to boot – of course it is. Live, dangerous, contaminated, powerful, biology-defying blood. Did I stand on it? No idea. Which means that I did. Which means there is blood creeping all over my shoes. I head back to the sink and begin the soul-crushing process washing the soles of my shoes in the sink – trying my hardest to ensure that the water flows DOWNWARDS, and does not go back onto the shoe and through to my feet – blood all over my shoes, blood on my feet. I clean my shoes, clean my hands, clean the tap (in case the water used to clean the shoes somehow splashed the tap). I head towards the door in a haze of WHAT THE FUCK DO I DO NOW WITH THESE FUCKING SHOES AND MY FUCKING JEANS THAT PROBABLY TOUCHED THE FUCKING FLOOR.
At this point I should probably mention that, whenever I use a public toilet, I will always use the disabled toilet if there is one; if, however, the disabled toilet requires a key and the guard of said key is nowhere to be found, then I will go to the next best thing – the family changing room. There are two reasons for opting for the disabled toilet over the regular cubicle in the regular public toilet. First of all, in my head, I figure that the disabled toilet is likely to see far less traffic than your standard row of cubicles. As such, it is – statistically speaking – less likely to be as dirty/contaminated. Secondly, a toilet that has a sink in situ is a dream come true (okay, slight exaggeration, let’s just say that it is an advantage) for those of us that are prone to washing our hands/body/shoes to excess. I recognise that it is not ideal that I – someone who does not live with a physical disability, or have a child – should use a toilet designated for those who really do need it but, I can honestly say, hand on my heart, that in these moments, being able to use a toilet that is not only less contaminated (or at least seems to be, to me), but also more set up for an OCDer, can be a huge respite for my anxiety levels. I am sorry that it must come to that sometimes, but honestly it is all I can think to do. Sometimes, in life, we go for what is easier, for what will bring less distress, for what will make us feel a little less isolated. The disabled toilet, for me, is one of those things. Sounds silly perhaps, but, unfortunately, it’s a truth of my particular OCD, for however much I wish it weren’t the case.
I walk out and, to my embarrassment, there are two women standing there with their small children. I feel guilty and so ashamed that I have used a facility that is reserved solely for them. I apologise to one of the women and proceed to hold the door open for her. She glares at me, frowns and spits, “OH!! You don’t have a child? You just felt like using the changing room?”. Humiliated, upset, sad and angry (mainly at myself), I snapped back, “Actually, I am not able to use regular public toilets” before turning away and storming off, indignant and crushed. I went back to where my partner was waiting for me and burst into tears. I cried because I was scared to death about what could potentially be on my shoes. I cried because yet another day had been ruined by this fucking disease. I cried because I was so ashamed, and so embarrassed that my abnormal behaviour had been called out in the most public of ways. The woman had a point – the toilet is designated for families, for those with children; and of course she has no idea that I was using that particular toilet to avoid contaminating myself (ironic really, given what happened). But I maintain that she did not have to call me out quite so viciously, and with such smug condescension. I don’t regret using the toilet, but I regret that I am at a place on my OCD journey where I feel that I have to use it. I don’t regret snapping back at her, but I do regret not finishing my sentence. Perhaps, next time, I’ll be brave enough to say:
“Actually, I am not able to use regular public toilets, because I have Obsessive Compulsive Disorder. Goodbye.”
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
Irregular and heavy periods
Pains in my ankles and in my legs (so much so that, sometimes, I struggle to walk)
An extremely slow digestive system
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
“Dear Jack” is one Mum’s open letter to her son as he battles with severe depression. Thank you to the author of this letter for sharing such a beautifully written and inspiring post. You can read the post here:
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?
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.