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Stigma: Anorexia Vs Bulimia and Binge Eating Disorder

/ bornwithoutmarbles / 12 Comments

Every mental health problem has a troubling mist of stigma surrounding it, but recently I have noticed that not all stigmas are created equally, and often the level of judgement varies depending on what condition that judgment is focused on. 

It isn’t even as simple to organise as “personality disorders get this level of stigma and mood disorders get this level”, because the amount of stigma can vary even between conditions of the same category, especially, I have noticed, when it comes to eating disorders, more specifically, anorexia, bulimia and binge eating disorders. 

I am sure there are exceptions out there but as a broad overall in my experience, I have found that the stigma surrounding bulimia and binge eating disorder (henceforth referenced by its acronym BED), is a lot worse than that existing around anorexia, and considering they are both so similar in being considered under the umbrella category of eating disorders, it makes me wonder why that is. 

I hate to say it but the level of judgement isn’t even exclusive to people who don’t know anything about mental health, and I have found it is incredibly prominent in the world of eating disorder sufferers themselves. 

For example, over the years in various groups and hospitals, I’ve met a lot of people with anorexia and I have found that many of those people actually had the fear of becoming bulimic or having BED as one of their reasons to fear recovery from their anorexia. I even remember one particular incident in treatment where a new patient asked another patient if their eating disorder was bulimia and the insinuation that that could be the case was taken as extremely offensive. Obviously it isn’t exactly polite to go wandering around introducing yourself by asking people intrusive questions about their mental health, but that wasn’t the part of the question that was taken as offensive, it was the bulimia part, and I know for a fact that had the question been “do you have anorexia?” the reaction would have been more “yes I do but blimey that is a bit outright as a question, we haven’t even had a cup of tea together yet” rather than “how very dare you accuse me of such a thing”.

I suppose in life it is common to fear the unknown, so it is more likely you will fear something that you haven’t experienced as opposed to something you live with everyday. 

For example I used to be terrified of blood tests but now I have them every few weeks and am not scared of them at all. Indeed I am quite the professional and can now have blood taken whilst remaining perfectly relaxed and without so much as a shudder (as long as that blood is being taken by a professional using one of those syringe things…I don’t mean I am cool with having people stop me in the street and attack me with a chainsaw…I imagine that would result in quite a lot of shuddering so please do not do that to test my statement because I will certainly shudder and you will certainly get arrested).  

Still, as much as that would make sense for people who don’t already have eating disorders, it seems a bit odd for someone who is familiar with the life of living with an eating disorder that is trying to kill you, being so scared of basically an eating disorder trying to kill you with a different name. It’s a bit like the experience of having a tabby cat, living with a tabby cat, yet still fearing ginger cats when really it is the exact same thing only with a slightly more tangerine-esque glow. 

I actually don’t think the fear of the unknown is really a part of the increased stigma around bulimia or BED versus anorexia at all though, rather I think it has to do with the fact that so many traits and behaviours that are associated with anorexia are praised in society.

Despite the fact that not all people with anorexia are underweight and, contrary to popular belief, people with anorexia DO eat, as a general consensus, people associate being anorexic with losing weight, being thin and never letting a morsel pass your lips, three things that are seen as good by most people. 

Think about it, when it comes to all of those diet clubs out there like Slimming World and Weight Watchers, you get things like certificates and “I lost half a stone” keyring prizes for losing weight and I am pretty sure they only hand out certificates in life for things that you are supposed to be proud of. When I was learning to swim as a child at least, they certainly didn’t hand out prizes for the person who was drowning in the bottom of the pool (which is understandable as that is not exactly the aim of a swimming lesson but still a bit sad as it is the person who was drowning at the bottom of the pool who could use a bit of cheering up with a certificate, as opposed to the person who managed to swim a perfect ten lengths of front crawl…what do they need cheering up for? Isn’t it enough not to have water up your nose? Kids today are so ungrateful!). 

Similarly, as I have mentioned before, in society we have this weird obsession with associating refusing a piece of cake at a birthday party as “being good”, while those of us with icing on our chins are doing something “naughty”, so the idea that anorexic people don’t eat unhealthy foods is similarly admired, rather than feared as a sign that someone is potentially starving themselves to death. 

Anorexia is often seen as a sign of strong self control, whereas bulimia and BED on the other hand is associated with things like a lack of control and even more infuriatingly, greed/gluttony. These two things are so opposite to being admired that they are two of the seven deadly sins for goodness sake, and it drives me up the wall, back down round Tottenham and up the wall all over again because neither bulimia nor BED are anything to do with greed or gluttony. I am seriously considering getting that as a bumper sticker so that at least whilst I am doing all this being driven mad I am educating people along the way, although I would really rather not drive at all because I do not have a license and petrol is incredibly expensive. 

If a person with bulimia or BED goes around a supermarket and buys a lot of unhealthy food to binge on or eats excessive amounts to the point that they are compelled to purge (or not), it is not out of personal want or greed, it is because they have an eating disorder in their head that drives and compels them to do so. It is not the person with the disorder in control thinking “ah this will be a lovely way to spend an evening, I thoroughly enjoy a few hours weeping into a toilet with a throat as raw as sandpaper”, it is the disorder that is at the steering wheel, and when people are attempting recovery it is more about learning to steal that control back from the disorder rather than trying to control their personal desires. 

Similarly, anorexia is nothing about self control and I would even argue shows an extreme lack of control. You can praise people for not dunking a hob nob in their morning cuppa all you like, but how in the hell is it a sign of good self control to be incapable of eating and starving yourself to death? Who would give a certificate out for that? (I realise this may sound hypocritical considering I was arguing that we should give prizes to people drowning in a swimming pool five minutes ago but let’s just set that example aside for the time being…). Much like the person with bulimia, when I struggle to eat I do not feel in control of the situation and I do not look forward to an evening crying over a bowl of cereal, excitedly clapping my hands at the prospect of a few hours staring at a Weetabix. 

Bulimia, BED and anorexia then are, despite the varying stigma, very much the same and very similar in that they are about wrestling with a deadly eating disorder. That’s it. It doesn’t matter that two of the disorders are known for expressing themselves via binging and possibly purging, whereas the other has its name up there as a sign of a lot of lettuce and weight loss. Aside from the treatment required, the expression of the disorder has nothing to do with it just as the colour of a ginger cat means nothing next to the tabby, THEY ARE BOTH JUST CATS AND BULIMIA/BED/ANOREXIA ARE ALL EATING DISORDERS. Both bulimia and BED are as much about greed as anorexia is about self control, aka they have nothing to do with it, and I really think we need to spread that message to stop the level of shame surrounding such disorders. 

Admitting you have an eating disorder is hard and embarrassing, but it is even harder and even more embarrassing when you have extra stigma piled on top just because of the name of your condition. If bulimia and BED are portrayed as about greed and shame, people are far less likely to admit to having a problem and seek help which is incredibly dangerous as both disorders are serious, they are deadly and can be fatal with complications caused by things like electrolyte imbalances, heart attacks and other consequences of recurrent purging, so seeking support for these conditions is as important as seeking help for any restrictive disorders. We need to stop the judgement and discrepancies between different names for eating disorders and need to see them back under the same deadly umbrella, they are ALL serious, ALL dangerous, and ALL are worthy of the help and support needed to get better. 

Take care everyone x 

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What It Is Like To Be Taken Into Hospital Under A Section 136 Of The Mental Health Act

/ bornwithoutmarbles / 26 Comments

I honestly don’t know where to begin with this week’s blog, as lord knows it has been a fairly traumatic seven days.

I guess I will just have to start at the very beginning (a very good place to start according to a certain Maria Von Trapp), the beginning being Saturday afternoon when things with my mental health blew up like some atomic bomb (and by atomic bomb I mean a really massive nuclear weapon of mass destruction and total insanity. There was even a mushroom cloud). 

So, picture the scene, it is Saturday afternoon and I am with my mum in the car outside my house (as in the family home where I grew up, not the flat) and we were talking about the fact that from today, my parents are going on holiday for two and a half weeks. Now, I realise that I am 26 years old and should therefore feel fine about being left alone for two and a half weeks, but due to my issues I am incredibly reliant on my parents and in reality they are more like a pair of carers as opposed to members of my family. Indeed, as I may have mentioned before, my mum gave up work to look after me full time as my level of independence is quite low, especially when I am struggling as much as I am now, and in fact my level of independence has been rapidly falling in recent weeks because the noise in my head is so loud that I have been finding it hard to take care of myself properly. I also fear this holiday because due to my diagnosis of Borderline Personality disorder (or Emotionally unstable personality disorder as the kids are calling it these days), I have an extreme fear of abandonment, which manifests itself in me doing anything I can to keep people from leaving me alone. I want to write a full blog about this fear of abandonment thing one day but for now just know that the idea of being left by my parents strikes absolute terror into my very core.

When mum and I were talking about the holiday then, I became extremely anxious and things only got worse and worse as time went on. It was then after about ten minutes of conversation that it happened. I snapped. 

It is extremely difficult to explain what I mean by that but basically it was like a switch went off in my brain and I became so terrified of being left alone that I completely lost control, so the rest of the scene happened in a total blur with me sort of watching the action and what I was doing rather than taking part in it. As soon as the thing in my brain snapped I just started hysterically screaming and crying and then for some reason I started to lash out. Like I said, all that happened was a total blur but from what I have been told afterwards in this lashing out I ended up hurting my mum and then in an act of total wildness I grabbed her phone and smashed it in the road. Naturally, my mum was terrified so she ran into the house without me, at which point I was left alone in the garden and the screaming in my head got worse. As you know, I have OCD with an extreme fear of contamination and in my daily life I barely touch anything unless it has been antibacterialised before hand, yet at this point I was so out of control that I started actively tearing up plants from the garden, running my oh so perfectly washed hands through the filth and soil, ripping roots and flowers like a maniac. I could feel the dirt wedging itself in my fingernails as I grabbed at the earth but still I couldn’t stop until the point where the anxiety in my mind reached such a point that I realised I need to stop the noise and the only way I could see to do this was to end my life. At this realisation I ran from the house, sprinting faster than Usain Bolt on steroids, the only thought in my head being that I needed to end my life. I won’t tell you exactly how I planned to do this as I don’t think that is helpful for anyone, but just know that I ran and I ran, desperate to reach the moment where I could end it all and in turn end the terrible thoughts. 

For about half an hour I was running alongside a river, looking around in fear that someone was going to save me and it was at about this point that I saw the first policewoman. As I saw her I started to panic but she let me pass without a word so I thought I was “safe” and continued on. Soon however I reached a pub, and it was here that I spotted two police cars in the distance as well as two police officers coming towards me. It was then that I realised that they were here for me and I froze like a deer in the headlights. I wanted to run but as I turned I saw the other policewoman coming from the other way and I found that I was completely ambushed. Still I tried to escape, but the three of them managed to trap me in a corner where I stood crying and shaking uncontrollably. As we stood there they asked me a few questions and then told me that I had to go with them. Naturally, this was not what I wanted at all, I wanted to be left alone to die but I had no choice in the matter and after a few more words I was escorted by the police through a giant crowd of people in a beer garden, enjoying their drinks in the summer sun, and into a police car. It was quite possibly the most humiliating experience of my life. Once in the car I was then driven home, but as two police officers went into the house I was left locked in the vehicle with the third police woman who was trying to calm me down. I however could not calm down and this fact was only made worse when the other two police officers came back to the car and told me that I was being arrested for assault, and criminal damage against my mum’s phone and the garden. It was honestly like something out of a movie with the police officer saying that whole speech about how I didn’t have to say anything but anything I did say could be given in evidence etc etc. Desperately, I pleaded to be allowed to speak to my mum or at least give her a hug as I was so afraid, but the police officers refused and with that I was driven to a police station where I was supposed to be interviewed by a sergeant. I however, was far too distressed to talk, so I was taken into a police cell with a new policewoman, an extremely empty, cold and uncomfortable room with nothing in it other than a bench. Together we sat on the bench, me frantically asking questions and begging to go home but the woman would not talk to me. I don’t know how long we stayed in the police cell (it felt like forever) but eventually one of the previous police officers appeared to tell me that because all of my actions were due to mental health problems I was being “de-arrested” and instead sectioned under Section 136 of the Mental Health Act. It is likely that if you have any mental health problems yourself you will know what a 136 is, but if you don’t it is basically a Section of the Mental Health Act under which police can detain you if they deem you to be at extreme risk of hurting yourself or other people. This then meant that I had to go to a hospital, so without further ado I was placed into an ambulance, driven to a 136 hospital and then I was escorted inside by the police. Once there a mental health nurse came out to ask me a lot of questions but I was still so distressed that I just cried and could barely speak. Questions over I was then escorted to my room, possibly the barest room other than the police cell that I have ever seen. Naturally, because a 136 suite is a hospital where people who are trying to end their own lives are taken, there is nothing in the room that you could hurt yourself with which basically meant that there was nothing at all. Ok I have been in mental hospitals before but this was an entirely different kettle of fish, with nothing other than a bed nailed to the floor and not even a door to the bathroom or a seat on the toilet. 

I am sure the place was clean (after all it was a hospital) but because I was in a new environment it was this point that OCD kicked in and I totally freaked out. As I had been picked up by the police I didn’t have any belongings (they had searched me and had taken everything away from me at the station) so without my trusty hand sanitiser I was at a loss and started having a panic attack. Thankfully the staff were absolutely amazing and a kind HCA talked to me to help me calm down. She then went to find some anti bacterial wipes as well as a mop and bucket and together we cleaned the whole room. Even when clean though I was still desperately suicidal and at risk of self harm, so she stayed with me and helped me to shower and get into some clean clothes . Naturally I continued to beg to be allowed home to see my mum, but obviously because I was sectioned I wasn’t allowed home for 24 hours or until a mental health team could come and assess me, so to my dismay I had to stay the night. Thankfully the staff there were completely amazing and kept me safe until I fell asleep around 3am. 

I must have been tired after all the drama because I slept then until 3pm (other than a few five minutes during the night where I was woken up by the screaming of other patients) and at 3pm I was awoken by a nurse telling me that the doctor was there to assess me. From there I went in pyjamas looking like a right scruff bag (not that I really cared at the time…I was so out of it and traumatised that I would have probably been assessed in a penguin suit and not been embarrassed) to another bare room with a few chairs to talk to a social worker, a doctor and a psychologist. Naturally their main goal was to assess how at risk I was to see if I needed to go to a longer term hospital, but I was so scared of that that I am ashamed to admit that I lied. They asked me if I felt in danger or suicidal so I told them that I felt safe over and over again. I must have been convincing because thankfully they agreed to not renew my section and said that I could go home, which I guess takes me to this point right here, writing this blog in my flat feeling as unsafe and at risk as ever, all alone and traumatised by the past 24 hours. On the plus side, if any of you out there have ever wanted to know what it is like to be picked up by the police and taken to a 136 suite, now you know! Hoorah for small mercies! 

I am not really sure how to end this blog other than to beg all of you out there not to see me as a terrible person for all that I have done and explained in this post. I will admit I have behaved disgracefully and I am extremely ashamed for all my actions (especially hurting my mum who like I said I love more than anyone in the world and would never hurt whenever in control of and feeling rational about my actions) but I really want you all to know that all that has happened has happened because I am really not well at the moment and am more out of control than ever. As you know I was un-arrested in the end and was taken from the police station to a hospital, so please do not think any less of me or assume me to be some kind of criminal, as when I am in my right mind I would never behave as I have done this past few days. I cannot control what any of you will think of me after admitting this (I hate admitting it but as I have always said on this blog I am nothing but honest) but if I could influence your way of thinking whatsoever please do not think of me as some violent, nasty person, but rather as a person who is very unwell and struggling with their mental health problems more than ever. 

As I go forward after this incident all I can do is hope that I can manage to keep myself safe even though when I told the psychologist this, it was a lie. The next two weeks are going to be extremely tough for me as my parents are away, but thankfully I do have friends who are coming in to look after me and the crisis team are visiting every day. I hope I can stay alive for them and equally I hope that I can stay alive for all of you too. For now though, I will end this post and simply hope that you have all had a good week. You all mean so much to me and I am eternally grateful for all the friends I have online who supported me during this “incident”. 

Take care everyone x 

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Can Some Treatment For Mental Health Problems Make Issues Worse?

/ bornwithoutmarbles / 13 Comments

Peanuts are a great source of protein, anti oxidants, and have been shown to be beneficial to heart health. When I eat a peanut, my heart throws a little fiesta in celebration and uses every ounce of peanut to make itself extra awesome. When my imaginary friend Jimmy eats a peanut however, he explodes and turns into a bucket of water (Jimmy has a very severe imaginary peanut allergy. Don’t worry though, I gave him an imaginary unicorn to ride on as compensation for his unfortunate condition). 

Clearly then, sometimes, things that are supposed to be good for us and that are supposed to be beneficial to our health don’t work for some people, and the same can be said of mental health treatment. 

Now before I get carried away I would like to express that I am VERY grateful for all of the mental health treatment I have received over the years, even the things that haven’t worked out, because they have taught me what kind of things do and don’t work for me. I know I am very fortunate to have had so much and such a variety of support, as there are all too many people out there who don’t get any treatment at all and that is heartbreaking. Anyone suffering with a mental health condition should be able to access treatment, end of discussion, so I am not saying “screw all of you people who have never had any help, I have had some unhelpful help so pity me”. 

Instead, I think it is important to look at some aspects of mental health treatment that can maybe cause more problems than they solve so that we can improve that treatment and make it better in the future. It is all well and good to say “all treatment is good treatment and you should just take it no matter what” but if we did that we would never move further in the ways people with mental health problems are supported and increase the benefits that support can bring.

Hundreds of years ago, people with what we might potentially diagnose with mental health problems, were seen to have evil spirits lurking inside of them and were treated by having a drill shoved through their skull to let the spirits out. If nobody had ever stopped to think “hey, maybe this bashing people about the head isn’t very helpful after all”, we might still be doing that today (which would make my weekly trip to my psychologist even more terrifying), so although I don’t think anything around today is as detrimental as head drilling, I have personally found some treatments to be quite problematic. In this post I therefore I want to be seen as looking at the peanuts and trying to keep all the goodness in whilst getting rid of all that stuff that turns imaginary people like poor Jimmy into imaginary buckets, rather than as throwing all the peanuts into the bin and declaring them all to be useless. 

I am sure there are a lot of people out there who can attest to treatments that have been more detrimental than helpful in the sense that a lot of times, group treatments and inpatient settings can be rather triggering. I have known many people who have picked up behaviours from other people they have met in hospital, but I think this is less a problem of the style of treatment and more a problem with the competitive/comparative nature of certain illnesses themselves. It would be unrealistic to say that everyone who is ever hospitalised should be kept in a separate room away from other potentially triggering patients because that isn’t real life, there are always going to be people who trigger you no matter where you are, and the key is to learn to deal with and manage that. 

When it comes to problems with treatment however, an important example for me in terms of an actual treatment style that made things worse for me, was a certain inpatient unit I was in for my eating disorder, and their extreme “this is the most important thing ever” focus on weight. 

Before I went to that unit, I did not weigh myself, nor did I care about the number of kilos on the scale or what my BMI was. 

My eating disorder was all about how I saw myself in the mirror and how I felt inside. Some days I would struggle more because I “felt” and saw myself as extra disgusting, whereas other days I would do better because I maybe didn’t feel as terrible about myself. 

If I had been weighing myself during those times, there probably wouldn’t have been much difference between the numbers shown on the scales on the days that I “felt massive” compared to the days I “felt not as bad”, like I said, it was all subjective and all internally measured by my emotions as apposed to any little plastic square I could stand on that would then flash numbers at me. Ok, I counted calories obsessively, but when it came to weights, numbers were irrelevant to me, and if you had told me what I weighed it wouldn’t have had any meaning to me. 

During my first inpatient admission for my eating disorder however, all of that changed, and it is since that admission that my eating disorder has progressed to the point where my it is still concerned with how I feel but also obsessed with the number on the scales and the great significance “what that means” (spoiler alert: it means very little nothing at all in terms of a person’s self worth or value on this planet. That kind of thing is instead measured by how lovely you are to people and whether or not you are one of those cheeky people who puts an empty carton of milk back in the fridge just to destroy someone’s morning hopes of a bowl of Coco Pops. THE MILK CANNOT TURN CHOCOLATEY IF YOU DON’T LEAVE ME ANY MILK).

I understand that in eating disorder treatment it is important to be aware of weight to a certain degree for various reasons (not that the weight of someone with an eating disorder will tell you how ill they are or how physically at risk they are of serious complications), but in this unit, weight meant EVERYTHING and every number on the BMI scale had a significant consequence to it. It would have been one thing if there was a rough weight band stage thing to use as a guide, but instead of that each number specifically told you what you were allowed or not allowed to do. 

Some I could vaguely understand. There was a weight at which you were allowed to do yoga for example, a weight at which you could go bowling, and a weight at which you were given permission to walk around the grounds. It is the more arbitrary number obsessions that I think should have been focused more on the individual and their struggles/progress, rather than simply basing it on silly numbers. For example there was a weight under which you were not allowed to pick your own food at lunch and instead had to keep your fingers crossed that the nurse wouldn’t pick the one option that you genuinely hated for reasons outside of your eating disorder, a weight at which you were allowed to pour your own milk into your cereal, even a weight you had to reach to earn the right to spread butter and jam on your own toast. 

Again I get the importance of this, very early on in treatment people may be unable to spread an acceptable amount of toppings on their toast or decide what option to chose at lunch so that extra support may be warranted, but who is at what stage should not have been decided by weight alone. 

For example what if someone who was severely unwell came onto the unit above the weight of toast spreading privilege. Was it fair to leave them wrestling with the marmalade on day one just because their weight was a few digits out? And what about people who mentally progressed very quickly and although they came in at low weights were able to manage marmalade responsibility before their weight reached acceptable levels. I knew of several people whose bodies struggled to gain weight no matter what they ate and they got frustrated in feeling mentally held back by not being allowed to spread their own toast or pick from the options at lunch themselves, skills that would have been beneficial for them to practice to carry out responsibly. 

Obviously if they had started demanding dry toast and a celery stick for meals it might not have been the best idea, but neither is holding people back or pushing them forward simply because of a number that doesn’t measure the mental part of the mental illness. 

Like I said, before that admission, weight was not a concern, but ever since then, what I weigh has always been significant, and I still think of my personal weight as a measure of how well I am to some degree, regardless of the mental struggle. Even now I still see those weights as the “well enough to spread jam” weight which allows my head to use these opportunities when I am at these weights to convince me that I am “ok now” (clearly when one has the ability to spread jam on one’s own toast it means that a person is fully recovered and needs no other progress to enable a healthy life…YAY EATING DISORDER LOGIC.) It just seems a bit confusing to me how so many therapists and eating disorder services over the years will tell you to “ignore the number” and tell you that “it doesn’t matter”…yet then go on to measure your level of wellness by that number and dictate your rights accordingly, showing that it actually matters and means a lot…contradictory much? 

The second example of treatment that I personally think caused more problems than it solved was my first admission to hospital when I was about 11. Admittedly I needed to be there, my OCD behaviours were controlling my life, everything was completely out of hand and someone needed to step in, but remember I was a scared 11 year old suddenly waking up in this mental hospital and  living away from home for the first time. I needed treatment yes, but primarily, I needed mental support, and that wasn’t what I got.  

My shower and soap rituals were instead physically controlled by means such as locking me out of the bathroom and stealing my soap. Now, exposure therapy for things like OCD is a very valid method of treatment, you are scared of something, you expose yourself to it, people help you through that exposure with support and you keep practicing until it isn’t scary anymore. 

Problem was, I had nobody to help me work through that exposure, all treatment was physical and ironically there was no mental support whatsoever despite the fact it was a mental hospital. 

Therefore, instead of working through my problems, I was just traumatised for weeks and left to struggle alone in absolute terror, so naturally, when I went home, I was not a fan of psychologists and would refuse further treatment. Had they worked with rather than “on” me, I would have trusted them and would have seen them as people I could work with to get through my problems, but in my 11 year old brain that experience taught me that therapists were nasty people who take you away from your parents, lock your bathroom, leave you to suffer alone and then send you home with all the mental pain you had before plus a little bit of bonus anxiety. Consequently, there were several years where I refused to see therapists and would lock myself in our home bathroom when they came to visit, refuse to go to clinics, or “forget” to leave lessons when they came to visit at school for sessions (that’s right…I hated therapy so much I voluntarily stayed in Maths lessons that I was allowed to get out of…MATHS!)

It has taken a long time for me to get to the point where I can trust therapists again, actually talk to them, see them as humans rather than soap stealing villains, and still every mention of exposure therapy sends me bananas because my first bad experience of it has not left me excited to give it another go… 

So, can certain kinds of mental health treatments actually make a person worse? Well, yes, and though I think it is important to try new things and approaches, it is equally important not to label all treatment as helpful and to be able to critique the bits that maybe aren’t as helpful and could use a bit of a rethink so that we can improve them, keep the good and edit out the bad, or else we would still be in the time of drilling people in the head, and nobody wants that. By all means use a drill to put up a nice painting or build a table, but when it comes to my noggin, I would rather you kept all power tools at a safe distance. 

Take care everyone x 

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Why We Need To Stop Rating Pain On A Scale From One To Ten

/ bornwithoutmarbles / 6 Comments

Whenever you go to A&E or are admitted to a general hospital for a physical illness because of an injury or disease that hurts, you are always asked the same question. 

“On a scale from one to ten, how would you rate your pain?”

They make pain sound like a hotel that you recently stayed in on holiday. You know, those hotels where at the end of your stay you are handed a feedback form to let staff know what you thought of the experience provided (although with the pain thing ten tends to mean “the worst pain you have ever felt” and zero “no pain at all”, rather than the hotel ten to zero equivalents of “I found a dead man in my bed” to “the room service was excellent.”) I always find this question a difficult one to answer, which is silly really because it isn’t exactly a question that requires much revision (unlike GCSE biology. I swear I read those text books so many times that I will never forget the fact that most of the energy released during respiration comes from the mitochondria), and really I am the only person who can answer it. Then again, how can you answer such a subjective question and how can you quantify pain? When you are in pain, that is it, all you know is that you are in pain and the ability to rate it on a scale is somewhat diminished by the agony you are experiencing. 

Were someone to ask you to rate your pain on a scale seconds after you had just stubbed your toe, most if not all people would probably cry out “10” and then perhaps yell some abuse at the person who was asking such a silly question when they were leaping around with a potentially broken toe. In those moments when the injury has just occurred (aka the toe stubbing), you are unable to rationalise that really, the pain is unlikely to be the worst pain you ever felt. You don’t hear the question and really think about it, employing reason to figure that stubbing your toe was probably a lot less painful than the day you had your whole foot bitten off by a shark (suffice it to say you are rather careless with the body parts that exist below your knees). No, in that pain your stubbed toe is a 10, the worst pain ever, and you would say that whether or not that is true. 

The question is then further complicated by the fact that people have different pain thresholds. For example, I use an epilator to remove unwanted hair on my legs (lovely image for you there…enjoy it), and for me the “pain” that causes doesn’t bother me at all because I have been doing it for years and am used to it. My mum on the other hand couldn’t epilate because she finds the process agony, a pain that I have somewhat grown out of fearing through repeated experience. How then can you ask someone to rate their pain when one person’s 10 could be another person’s 4. 

All in all the question of rating pain in medical settings is problematic, yet I would say it is far more problematic in the way it is used when it comes to mental health problems. 

Whenever you are admitted to a psychiatric hospital or sent to see a new therapist, it is likely you will be given a form to fill out with a lot of questions, scales and little boxes to write numbers in. The questions are differently worded each time but overall they are pretty much the same and include things like “On a scale of one to ten how depressed have you been in the last 28 days” or “In the last 28 days how anxious have you been on a scale of one to ten” (Mental health professionals love measuring time in 28 day blocks. Weirdos.)

I myself have filled in many forms like this over the years, and the questions stump me every time. Asking me to rate how depressed I am with numbers is like that song in the Sound Of Music when all the nuns are singing about the difficulty of solving a problem like Maria being akin to pinning a wave upon the sand. When I am depressed, it simply feels like I am drowning. How on earth can drowning be rated? You can’t be more drowning or less drowning, you are either drowning or you are not, and if it is the first of those options then the important thing is to send out the life boats rather than asking exactly what percentage of your lungs have filled with water. On the most recent questionnaire I filled out I was asked to write a number from 1 to 10 describing “how suicidal” I had felt in the last 28 days and then there were further enquiries as to how many days I had felt that way and what each of those days looked like when rated and compared. What kind of question is that? Can you rate how suicidal you have felt? Much like with the depression question, when I feel suicidal it is a feeling with a depth and breadth far greater than I can put into words, let alone numbers. Never have I ever turned up in a session saying I feel like “a 4” or indeed “a 10”. Instead I try to capture what is going on using any adjectives to hand, hopeless, guilty, lost, useless, depressed, like a waste of space etc, and even those aren’t good enough. Furthermore, if I have been feeling suicidal for a length of time I am unable to distinguish the levels of the feelings with each day that passes because on the day I am asked, the pain I am CURRENTLY experiencing is all I can think about, much like the person with the stubbed toe can only think about their bruised digit. Even if I could distinguish the difference, how can you measure “how suicidal” you are? What are you supposed to think? Should I reflect on my week and think “well Tuesday was clearly better than Wednesday because I only prepared a noose without planning on a place to hang it and working out how to get to such a height? Isn’t the fact that someone is suicidal enough to ring alarm bells? Professionals should hear that pain exists and take action immediately because to feel suicidal at all is incredibly serious and not something that should be dismissed because the form rated the feelings as “1”. If the number is anything other than a 0 in whatever box, the pain should be addressed rather than swept under the carpet as insignificant. 

Of course I understand the need to rate pain in the physical illness world and to some extent in the mental illness world as well. If you need to tell a doctor where something hurts, telling them how badly it hurts could be a handy indicator as to what is going on. Indeed I think numbering pain has great value and for a brief glimpse into how life is for a certain person, it has a place, but it is still incredibly limited. I am not saying we should stop rating pain by numbers, I am saying that we need to rate it in other ways too. For people who are scientifically minded maybe numbering things is a helpful way to look at distress. I myself however, am not a mathematical person, I instead deal with words and images. When I am distressed I feel my heart racing at such a rapid pace that I feel it will burst from my chest, when I feel hopeless I can see nothing but a bleak black hole, and when I am overwhelmed the world is a screaming canvas of differently coloured paint splattered chaotically like a Jackson Pollock painting. How on earth am I supposed to get all of that into a little box on a form using a secretary’s leaky biro? Mental illness questionnaires need to offer a variety of ways for people to express themselves, maybe some lined paper so that they can write if the number system is unsuitable, hell maybe a watercolour pad and some paint to at least attempt to capture the uncapturable and intricate complications of the human mind. Patients need to be seen as individuals who all feel and express themselves in a certain way, and the questionnaires they are required to fill out should reflect this. 

In my most recent forms, to be honest I found myself writing random numbers in a lot of the boxes (or at least numbers that my head didn’t deem as “dangerous and likely to cause harm to a loved one”), because I couldn’t rank my levels of distress in numerical order and I would be surprised if other people hadn’t had to do similar things just to make the professionals happy when really the idea is that they are trying to help YOU as an individual get better, not YOU helping them fill out their paperwork. Let us explore the diversity of experience in diverse ways, use any method possible to express some of what is going on in the depths of our souls and listen, look, even smell what is really going on rather than capturing it in an insignificant number on a scale of one to ten. We need to focus not on rating the pain but acknowledging that its mere existence is a problem and that if someone is drowning the key is sending out the life boats, not waiting for them to be “more drowning” or to cry out a number that is in double figures. By then who knows? It might be too late. 

Take care everyone x

Pain1

Should NG Tubes Be Used In The Treatment Of People With Eating Disorders?

/ bornwithoutmarbles / 10 Comments

When it comes to treatment for people with eating disorders there are many different options and interventions to be explored, various therapies, meal plans, pieces of group work and even hypnotism. However, alongside all the perhaps more psychological treatments, there are other more invasive practical treatments that can be used such as the NG tube (a tube that is inserted through the nose and into the stomach to feed a patient who is unable to consume food orally themselves), and this is something I never had much of an opinion on before it happened to me recently for several weeks of my admission to hospital. It may seem silly or odd to be bringing this up now as my tube came out over 8 weeks ago so surely I should be over it and not thinking about it anymore, but I have to say that even though it has been a while since its removal, the method of being NG fed still affects me to this day, is a fairly traumatic thing for people to go through, and it has made me wonder whether or not NG feeding should actually be used in eating disorder treatment full stop. 

Obviously if I am going to open up a debate in this blog about whether or not NG tubes should ever be used I am going to have to say that aside from all the ethical, psychological, long term effect complicated sides to the issue, bluntly yes NG tubes should be available as a way to treat people with eating disorders. Despite their perhaps negative side effects down the line, it makes no sense to rule them out completely (unfortunately…I really hate admitting this…excuse me whilst I go away and grumble). 

Sometimes, whether we like it or not, NG tubes are life saving necessary pieces of treatment and there are people out there who arguably would have died without them. If a person is unable to nourish themselves adequately and becomes seriously medically compromised, sometimes the only option is to NG feed them as a matter of saving a life and I know that, as much as I disagree with the methods used on me and wish more than anything it hadn’t happened, that that is the argument doctors and nurses have had with me in defending that method of treatment. 

Aside from life saving serious stuff, NG tubes can also be positively used not just for getting nutrition into people but for providing a motivation to eat orally despite the screaming eating disorder wailing in their head like a banshee who just stubbed her toe on a particularly sharp piece of lego. 

When someone is struggling to eat because of an eating disorder it is often made harder by the fact that eating always feels like a choice, an option you actively choose to partake in, and who would choose to torture themselves by forcing themselves to eat when they knew their brain would go off screaming at 90 miles per hour? With an NG tube in place however, the act of getting nutrition is no longer an option or a choice, it is going to happen one way or another and with this choice of whether or not the food will go in eventually being taken away, sometimes eating becomes easier. 

Personally I can at least admit and testify to the fact that I found the NG tube helpful in the sense that it did motivate me to eat because the choice was taken away. No longer did I have the raging debate of “do I eat or don’t I”, it was just a matter of how it was going to go in/happen (“up the nose or down the throat” as I used to think). It also gave me encouragement to eat in a way because there were times when I knew that if I didn’t consume what was in front of me orally, I would get an increased number of calories down the tube and that certainly served as some motivation! 

Indeed at my unit there was a rule that I was presented with a meal and if I were not to complete it, the entire meal would be started again via the feed. Therefore if halfway through a meal I was struggling and really wanted to give up, having the tube there motivated me to carry on as I knew that were I to stop, we would have to start all over again and I would essentially end up having to go through the same meal twice. NG tubes can also be helpful in the sense that they offer a way for medication to go into a patient when a patient is unable to take a medication themselves (another thing which I hated and disagreed with personally but can understand is necessary in some circumstances.) 

As I said at the beginning of this debate however, alongside these positives there are a lot of negatives and it is the effect of these long lasting negatives that I am still feeling today. You see, when you have an NG tube, it takes responsibility for eating away, and whilst this is a good thing when a person is unable to eat by themselves, it is a bad thing because in learning to eat again or going through the re-feeding process they are not actually learning how to do it for themselves. Indeed, people go from needing the tube in an emergency situation to becoming dependant on it and that is what happened to me. For the first few months of re-feeding I was going through the motions but psychologically was making no progress and then when it came out I didn’t know how to eat. Without the tube, suddenly the guilt became much worse because eating went from being the lesser of two evils with the tube in to simply “evil”. 

Another negative from using an NG tube and perhaps the one I am struggling the most with today is that of rapid weight gain. When you are on the tube it is possible to gain a lot of weight very quickly that mentally you are not ready or prepared for and although it can again be life saving and good treatment medically, it can be an incredibly traumatic experience. Similarly, now I have been left at a weight far higher than I am comfortable with because of the tube and because I reached this stage far quicker than I would have done without it, I am still struggling with the repercussions and am feeling overwhelmed. 

In terms of trauma it can also be a traumatic experience to be restrained for feeds and when this happens it can damage the patient vs treatment team relationship. For example I used to trust my treatment team and even get along with a lot of them, but if I am honest, now I resent them all and want to be discharged from the entire service because the act of having something so traumatic being done to me has led me to dislike and mistrust them all. Having something like an NG feed physically done to you whilst you are held down means being treated as an object not a person, there is no therapeutic benefit, you are just a thing being pumped full of stuff you are terrified of with no chance to work through it or figure out a long term solution at home. It is a temporary fix and though you can force feed someone food, you cannot force feed them long term recovery, so in a sense the NG tube method is unhelpful long term. Then again that is just my experience and I know that for other people actually starting with an NG as a temporary measure can help long term as it gets enough nutrition for their brain to work and allow recovery long term afterwards so it really is all down to personal experience. 

Overall then, should NG tubes be used to treat people with eating disorders? Well, I don’t know is the honest answer, it is a tricky one because I think the answer will be different for different people. For some people using the NG tube is not a matter of something to be debated but a necessary life saving act of treatment and sometimes it can even help long term recovery by motivating someone to eat orally by taking away the choice. Also the more nutrition someone gets the more likely it is that their brain will be receptive to treatment but then again there are the negatives of cases like mine where I have been fed up to an unbearable weight via physical methods without going through the proper therapeutic work, meaning that I am now stuck unable to deal with it and thus struggling with relapse. I don’t think when it comes to this question there will ever be an answer for everyone but it is certainly a controversial topic that I think we need to keep working on and talking about. 

Take care everyone x 

NGdebate

Being Institutionalised After An Inpatient Admission

/ bornwithoutmarbles / 11 Comments

Humans are very much like lions. They have very fluffy manes and they like to stalk antelopes…no wait…that wasn’t my point…what was my point…ah yes, humans are very much like lions: they are not supposed to live in captivity. When you see a lion in a zoo standing behind the glass peering out, longing for freedom, they do not look happy, they do not look free, they look listless and bored and tend to pace around a lot because that is not an environment they are supposed to be in. Similarly, humans are not supposed to live in psychiatric units, it is not their natural environment, it is not where we evolved to be and being in one is an abnormal and temporary experience. Problem is, when you have been staying in a psychiatric unit for almost half a year, you start to get a little bit institutionalised and consequently over these past two weeks I have been struggling with my new found freedom.

Indeed, going back to the lion thing, I feel very much like a lion who has been living in captivity for a long time and then has suddenly been chucked out into the wild without any of the coping skills or natural instincts necessary to survive. I didn’t like living on one small corridor but at the same time it was a contained space that I knew every part of, it was a place I understood, yet now I find myself in this big wide open space of a world and no idea what to do or where to go. Over the past months I spent so much of my time desperate to get out of hospital that I never really thought about what it would be like when I got there and am now finding myself feeling a bizarre sense of “right….now I am out…what the hell do I do now?”. It is like my sense of direction has gone, my goals and my aims were all so focused on getting out and being free that I forgot about what would actually happen and what I would actually do when that freedom was achieved.

What troubles me is that I am not living in a place where I should feel like this, I am not living in an abnormal environment as I was when I was in the hospital, I am living where I am supposed to be, out in the wild, out in the real world, yet it is suddenly a world in which I do not feel I have a place anymore.

To be fair I am quite a homebody, I don’t go out much and the most adventurous trips I have been on since I have been out have been to places like the local supermarket, but every time I go to these places I find myself wandering around watching all these people casually buying food as part of their day, part of their lives that they are living and I wonder how on earth they do it. How do they live in this big scary world? How do they have jobs and families? How do they know what food to buy in a shop and then how do they go back home and make it into something to nourish themselves before maybe going on an evening out to do something similarly alien to me like socialising? I am not a part of that world. I am part of a world where I am used to waking up and being timed to eat a bowl of cereal under the watchful eye of a nurse or other mental health care professional, before gathering in a group room around a box of tissues to talk about my feelings. For five months the biggest deadlines and expectations I have had on my shoulders have been things like making sure I turn up to emotional regulation group with my notebook on time and making sure I am at the clinic to be weighed at 7:30 on a Monday morning. True I didn’t like it, to be honest I hated it, which is why I spent such a long time fighting professionals and trying to get out. I didn’t belong there anymore than a lion belongs in a perspex box, but it feels like so much time has passed and I have become so institutionalised, this admission more than any other even though this has not been my longest, that I don’t belong out here either. I don’t belong anywhere, I am like a ghost wandering around aimlessly haunting old places that I used to know yet now don’t feel a part of.

I think all of these feelings highlight one of the main problems with putting people into hospital for long periods of time, that being the institutionalisation I have mentioned and the fact that people forget how to survive anywhere else. They forget what it is like to be a person with a life and an identity other than a mental patient required to take their medication and have a stab at some therapeutic writing on a Wednesday morning or creative group in the art room on a Tuesday. It probably sounds ridiculous because I wasn’t even in hospital for that long and I have had many admissions before that I survived, some of which were longer than this, but I can’t help it, I just feel so out of place and so confused as to what to do now, A few weeks ago I talked about how living in a psychiatric unit is very much like living in a fish bowl and now I believe in that analogy more than ever. I am a fish out of water, or I suppose to put it more accurately since this is where I am supposed to be, a fish who has been used to a tiny little bowl with a little castle and a turret and is now presented with this great big ocean with giant sharks and other fish busily swimming past as if they are all going some place important and all know a lot of things that I don’t.
If it wasn’t for this blog I wouldn’t know what I was doing at all and to be honest I am even struggling with this. At least my blog gives me structure, my blog gives me a plan to work to, every week I write it, I draw the picture, upload it on the Monday and then pray that people read it and don’t suddenly hate me, but even writing has got harder since I left hospital because I am at a loss as to what to do with myself and my brain doesn’t feel like it is working properly. There is too much stuff out here in the real world, too many people, too much noise, too much responsibility and I am just an unemployed head case living at home (for now). It isn’t as if I am some boss at this high powered company where I am entrusted with the responsibility of managing loads of people and their lives and actions as well as my own.

I guess it is all about what you are used to and that I will settle into the real world and get used to it again eventually, but still I wanted to write today to highlight how institutionalised you can get even if you only stay in a psychiatric unit for a couple of months and how very disorientating it can be once you leave. Don’t get me wrong, I do not want to go back there by any stretch of the imagination and I am doing everything I can every day to keep myself safe enough to stay out. Like I said, it wasn’t that I belonged there at all, I just want to know where the place I belong is now because at the moment I cannot seem to find it. I am supposedly back where I should be right now, yet I am very lost and frightened and really in need of some kind of map to find my way home. I just wish I knew where home was.

Take care everyone x

Lion

Dramatic Life Plan Changes When You Are Living With Mental Health Problems

/ bornwithoutmarbles / 16 Comments

You know that feeling where you don’t see a friend for a year (maybe they were backpacking around Australia or herding elephants in Africa), and then they come back for a cup of tea asking how things are going and you just sigh because there is so much to catch up on? Yeah. That exact feeling is the one I have today, only in this situation it isn’t that I haven’t written on my blog/spoken to you for a year (heaven forfend!). In actuality it has been a mere week since you last heard from me but what a week it has been and good lord with cheese and chopsticks do I have a lot to catch you up on!

Now, you remember last week when I talked about how I was about to go home after a five and a half month inpatient stay at my local eating disorders unit? Remember how I harped on about all the rules and regulations I had set in place to keep myself and my mental health problems on track and the importance of rules when living with mental health problems? Remember all that stuff I said about how I felt pressured to stick to the rules because if I didn’t there would be consequences including, but not limited, to my parents not being able to cope with me in the family home any more? (If none of this is ringing any bells I suggest you read the two posts that can be found, like aeroplane fire exits, here: The Pressure To “Get Better” When You Are Struggling With Mental Health Problems and here: Why Boundaries Are Important When Living With Mental Health Problems).
Good. We all up to date because you know that situation? Yeah, that situation has kind of sort of exploded all over the place and I have only been out of hospital for a week…

Indeed I can barely believe myself that it has only been such a short amount of time because so many things have changed. Like I said, I was only discharged last Tuesday, armed and determined with my rules and boundaries set my my parents to help keep my mental illnesses in check back home, but in this past week, all of those rules have gone horribly wrong.
From that first day back home my eating disorder looked at all of those neatly written out rules and laughed and I was smacked in the face by how much harder all of this eating malarky was going to be outside of hospital.
To be perfectly honest I do not understand it even myself.
For five and a half months I have been following a meal plan and now a simple change in location has completely thrown me off. I am not saying that I admit defeat already, far from it, but I can acknowledge that there is a serious problem and am well aware that, no matter how positive I try to be or how determined I am, I am currently unable to stick to the rules around eating certain amounts at certain times and not self harming that have been set.

“What is wrong with that?” I hear you ask “So you are breaking a few rules. This isn’t school, what are you worried about, getting detention or something?” I hear you cry!
Well no actually, I am not fearing detention but I have been fearing the consequences of me not being able to stay in the family home and in this past week it has come to my attention that me staying in the family home and living by my parents’ rules is, at this point impossible.

Now before I go on I would like to make it clear that my parents are not evil (well my mum is a little bit and she does cackle over a cauldron occasionally but that is a story for another day) and just because I am struggling with my mental health at the moment they are not kicking me out of the house. Far from it, they want and are doing all they can to support me with my insanity, hence why they set up these rules so that we could all try to live happily together, but to be blunt, they simply cannot cope with my madness any more for the sake of their own mental health (remember self care is important folks) and so me being unable to follow the rules has led to some consequences. What consequences?

Well, watch out because here comes a bombshell: I am not going to be living at home anymore. Yeah…I told you a lot had happened…

Like I said it was mere hours before we realised that I was not going to be able to live by the required rules and so, knowing that my parents could not cope anymore and that I didn’t want to put them through all of this again, I hopped onto google and started looking for a place to live. Mere days later I had impulsively used up my inheritance on a flat…yeah…I guess you could say things have moved pretty fast.

I don’t even know what to say or where to go from here because I am still so shocked and mind blown as to how all of this is happening and to be honest none of it feels real.

I am moving out.

I am in the process of buying a flat.

I have never lived by myself before and soon I will be living alone. WHAT IS HAPPENING?SOMEBODY STOP THE RIDE! I WANT TO GET OFF!

See what I mean about having a lot to update you on? Seriously, I have gone from living in an insane asylum for almost half a year, part of that time on 1:1 with a tube up my nose, to buying and living in a flat all by myself in the blink of an eye, and if I am honest, I have no idea how I am going to deal with it. Because of OCD and my eating disorder there are a million of normal every day things that I cannot do for myself from changing a duvet cover, to taking out a bin or washing a pair of socks and yet suddenly all of this responsibility is on me. Oh and how many Katies does it take to change a light bulb? THERE IS NO NUMBER HIGH ENOUGH BECAUSE THIS KATIE CANNOT CHANGE A LIGHTBULB. I AM GOING TO BE LIVING IN DARKNESS FOR THE REST OF MY LIFE UNLESS I GET SOME CANDLES WHICH I WILL PROBABLY DROP AND END UP BURNING THE WHOLE PLACE DOWN. I WON’T EVEN BE ABLE TO PUT THE FIRE OUT WITH WATER BECAUSE APPARENTLY FOR WATER YOU HAVE TO PAY A WATER BILL AND I HAVE NO IDEA HOW TO DO THAT EITHER. SOMEBODY HELP ME FOR THE LOVE OF GOD.

So yeah…that is my update, THAT is the latest Born Without Marbles news and an example of just one of the dramatic changes of plan that can occur when you are living with mental health problems…
Obviously it will be a while before I actually move out and into my new flat (turns out that buying property is far harder and more complicated than buying cuddly penguins…who knew?), but eventually that is what is going to be happening. In the mean time I will of course be living at home trying to stick by the rules as best I can and trying not to drive my parents completely mad but who knows how that is going to work out? Then again who knows how living by myself is going to work out because the only reason I am leaving home is because I am too insane and the last time I checked insane people weren’t the best at surviving in this world alone. Thankfully, whenever this flat does come through I will only be a five minute walk away from home and obviously my parents are going to support and help me through this more than I am probably giving them credit for, but purple onions and gravy am I terrified and filled with questions. How did this happen? How did my mental illnesses take over my life so much that they have led to me being practically evicted from my family home and forced to live alone where I cannot interfere with other people? How will I cope by myself if I can’t even cope with the support of other people? How on earth is this whole moving out of an intense inpatient setting and into an isolated empty flat going to play out? Well, truth is I have no idea. I guess we will be finding that out over the coming weeks together…

Take care everyone x

LifeChange

Why Boundaries Are Important When Living With Mental Health Problems

/ bornwithoutmarbles / 11 Comments

A few weeks ago when I was talking about the fact that I am getting discharged from an inpatient setting on the 20th of February/tomorrow if you are reading this on the day of upload, (handy link to that blog post here: The Pressure To “Get Better” When You Are Struggling With Mental Health Problems), I mentioned that there were going to be a lot of rules and boundaries in place regarding my mental illness that I would have to follow back home.
Seeing as these boundaries were set by my parents you might think I live in a particularly strict household with rules and regulations more often seen in a school rather than a home setting, but actually, I am starting to think that when you are living with mental health problems, it is vital for everyone to set some boundaries.

Thing is, when you have a mental illness bobbing along with you through life, you can guarantee that it is going to do all it can to interfere with any plans you had prepared. Thought you were going out for a night with friends? Surprise! Depression has crossed that out of the calendar and scheduled you in for a good old evening of crying into a pillow and thinking about what a terrible person you are. Decided to spend several hours working on that novel and actually being productive with your life? Nope! Instead OCD would like you to waste those hours antibacterialising various objects in the house that were already clean to begin with. No matter what illness you have, it is obviously going to impact your daily routine, and if left with total freedom, it is likely that it will impact your daily routine more and more as time goes on until you find yourself looking back and wondering how on earth things managed to get so out of control. Now when you are in an inpatient setting this aspect of mental health problems is managed somewhat by the rigid structure of your day to day life on the ward, but on the outside it is a hell of a lot easier to get carried away with your own rigid routines.

The reason for this is that I have started to realise that mental illnesses are much like dinosaurs, and living with them is analogous to being that professor that Richard Attenborough plays in Jurassic Park and it is that analogy (to be fair it has been a while since we settled in for a good old traditional Born without Marbles analogy) that I want to talk about today.

Maybe some of you out there haven’t actually seen Jurassic Park (and if you haven’t you really should, it is fabulous), but basically in Jurassic Park there is this guy called Professor Hammond (that’s the person with mental health problems in this analogy), and he owns this safari park of dinosaurs he created out of some blood that has been hiding inside of a mosquito for several thousand years (in the analogy the park is your brain and the dinosaurs are your mental illnesses, except obviously in the mental health version you did not create your dinosaurs/illnesses, rather they appeared one day and as a result you found yourself as keeper of this prehistoric zoo of insanity).

Having the dinosaurs there is obviously dangerous, so Professor Hammond does all he can to keep that danger to a minimum. In order to keep the visitors safe, he has a whole team of keepers helping him to keep an eye on his dinosaurs (aka psychologists and other mental health professionals), and there are physical boundaries/electrified fences set up all over the island around the dinosaurs to keep them in check. They are still dangerous dinosaurs, but when confined by their boundaries, their level of threat is somewhat controlled.

However in the film, before long, this idiotic man with absolutely no common sense turns off all the electric fences and cages that were housing the dinosaurs, and utter chaos ensues.
Without the fences, the dinosaurs do not remain in their neat little pens, they run amok and cause a hell of a lot of destruction and noise when doing so. That image (aka that of dinosaurs running madly all over the place eating people and crashing into everything), pretty much illustrates the importance of boundaries when living with mental health problems and why I have so many regulations in coming home.

For example, whilst I have been in hospital at my local eating disorder unit, there have been very definite rules set out to govern my behaviour. These rules are numerous and I cannot list them all for fear of boring you all to floods of uncontrollable tears, but as an example they have been things like the fact that if I do not eat my meal, there will be a replacement issued which if not completed will lead to consequences in ward round, or the rule that meal times take place at set points throughout the day with no option to delay that peanut butter sandwich for another five minutes. Meal times are meal times, you eat your meals in meal times, end of discussion.

Similarly there are rules to govern my OCD such as time limits for showers because without this kind of rule, my OCD tends to grab hold of all control over how long I take to shower and run with it a lot faster than I can chase after it (I was never one for athletics in school.)
When I have a time limit however, I have something to aim for, and though my OCD will still be present in my behaviours for the duration of the shower, it is my attempt at controlling it as best I can. If in hospital I weren’t to shower within the allocated time, I would be removed from the shower, so I sort of had to reason with my little OCD dinosaur to get through it. My dinosaur wanted to spend the next three years washing yet the rules meant this was impossible, so we had to work together and compromise. I would shower and do all the rituals I was told to, but only for a certain length of time. Having a time limit obviously didn’t always work and there are times where I still couldn’t stick to it, but like I said, it gave something to aim for and consequently I will still have that shower time limit now that I am heading back home again. Again it is unlikely that I will always be able to keep myself in check, but I know that without any rules in the shower things would be a lot worse than they often are and if I didn’t have a boundary set in place, then I doubt I would ever be able to get out of the shower at all.
I can of course tell my OCD that I have finished washing but OCD will always come back with “just another five minutes”, a request that, when given into, will be repeated every five minutes leaving me stuck in a ritual with no way out. With my rule, I at least have an argument against that. In the shower the OCD still dictates behaviours, but when it is time to leave the shower, I at least have the statement of “time is up and we must leave now to avoid consequences” to come back at any “five more minute” suggestions that should arise.

If you are living with mental health problems then, it is important to have your own rules in place to try and keep track of the interference it causes. You can’t control whether or not you have a disorder, but there are some things you do have control of that can help lessen the impact. Say you have an eating disorder and, as I will be attempting when I get home, you are trying to give yourself enough nutrition.
If you say to your eating disorder “I am going to eat better today”, then it is unlikely that you will achieve much, as “better” is a negotiable, subjective term that you will find yourself debating. Instead, hard and fast rules like “I am going to eat three meals and three snacks today” are more likely to merit results. They won’t necessarily mean you achieve what you want, yet again, like the shower time limit, it gives you something to aim for rather than a wishy washy “I will eat something” or “I will shower quicker” which without specifics don’t really mean anything and give too much control to your illness. I know that especially with eating disorders, giving into little things are a sure fire way of letting them spiral completely.
Whenever I have a bowl of cereal for example, I weigh out exactly the same number of grams each day without question. This is disordered of course, and one day I would like to pour cereal with all the gay abandon of a cereal pouring professional, but I know that if I don’t have a weight from my dietician to stick to, aka a boundary, then my portions will just get smaller and smaller. My eating disorder won’t ask for anything dramatic at first, just little requests like “just one flake less today” or “one gram less”, which doesn’t sound much but if you keep listening to that you will end up a few weeks down the line staring at a solitary rice crispy in the bottom of a bowl wondering where all the others went (and possibly hearing a very quiet pitiful sobbing from the rice crispy as they are very social creatures who, when portioned out individually, often get rather lonely. Rice has feelings too kids.)

You don’t have to make loads of rules and they can be small rules to start off, but no matter what the size it is vital that the rules are there. If you have depression, that sucks and you cannot control the effect depression will have on your mood. What you can control however, is things like taking any medication you have been prescribed or attending any appointments to try and keep it in check. If you have an eating disorder and a meal plan you have been told to stick to, make that meal plan your rule, your boundary that cannot be negotiated. Ok the eating disorder will still be there screaming and it may interfere with your behaviours, but having that meal plan there is a non negotiable that is not up for debate. With OCD rituals put time limits on how long they can take so that a quick five minute tidy doesn’t descend into a five hour mass organisation mission or at least put a limit in place as to how many times you are allowed to do something simply to give you something to aim for.
Like I said, this is not going to cure you of any mental health problems nor is it going to stop them interfering/being dangerous beasts much like the dinosaurs in Jurassic Park. In or out of a cage, a T-rex is a T-rex (unless it is a bunny in disguise), and you cannot control the existence of that T-rex or its nature/behaviour as a stomping, roaring, chomping scaly thing. What you can do however, is put boundaries in place to try and limit the destruction that dinosaur can cause, to do the best you can to take control of something that otherwise will take lack of rules as a chance to run amok to see what it can get away with, and that is why, as I go home tomorrow, I go with a set of rules and boundaries in place.

Coincidentally, that is also why mental health problems are like dinosaurs and why it is vital to have boundaries when living with them in your head/prehistoric safari park. Rules may be broken, but having certain rules in place at home does often help me to manage typically unmanageable situations a little better. If you have been in hospital, take hospital rules back home when you are discharged so that the illness doesn’t have the total freedom to reinvade, and if you haven’t been in hospital then maybe come up with some rules with friends and family who are willing to support you in your battle for sanity. Remember, a dinosaur is always going to be a wild destructive interference, but with boundaries, that destruction can at least be controlled as much as possible…I hope…

Take care everyone x

BoundariesDinosaur

The Difficulty Of Eating In Public When You Have An Eating Disorder

/ bornwithoutmarbles / 8 Comments

To the average person the idea of going out to eat is a pleasant one, and when someone suggests going out for a coffee and a piece of cake in a local cafe or out to dinner at a fancy Italian restaurant, the usual reaction would be “Why yes what a lovely idea”, or “of course! I think I shall order the lasagne”.
To someone with an eating disorder however, it is likely that the idea of eating food out will be a terrifying one, reserved to the realms of nightmares rather than sweet dreams, and if you are anything like me when it comes to life with my eating disorder, it is likely you would rather dance a tango with a giant hairy spider than go out to “grab a bite to eat”. It is for this very reason that when I was in ward round this week and I was told that I had to go out to a local coffee shop for a snack with a member of staff, I started to wish there was a chance to whip out my dancing shoes and go to a ballroom with an enormous arachnid instead.

It is silly really because like I said, as a rule people generally enjoy going out for food (even if, like my mum, that is simply because you don’t have to wash up at the end of the meal), but for me there are so many things to be scared of and I don’t think people realise just how many things there are to worry about when it comes to going out for something to eat when you have an eating disorder rampaging in your frontal lobes.

First off there is the difficult task of looking at a menu and choosing what you are going to eat. Alright you may have to make some food choices in the home or out at the supermarket, so choosing food shouldn’t be a sudden and new experience, but at least with that kind of thing you can plan far in advance and prepare what you are having yourself so you know exactly what the meal comprises of. When you are eating out however, the ability to plan everything and control each stage of the process is whipped out from under you quicker than a slippery yoga mat on a vaseline coated floor. Ok, nowadays most restaurants and cafes tend to have menus online so in a sense you can prepare for what you are going to attempt and do not have to make a choice on the spot, but even if you make a choice from an online menu you can never guarantee that what you decide on will be available in the branch of the restaurant that you visit in particular. What if you have your heart set on the roasted aubergine spaghetti and then get to the table only to be confronted by a waiter breaking the news to you that they are all out of pasta and severely lacking in terms of aubergine supplies? What if you get your head all psyched up to tackle a chocolate muffin with multicoloured sugar strands and then find that the muffin man got caught in a traffic jam on the way to deliver his cocoa rich rainbow sprinkled delights? HOW CAN ONE RELAX AND MAKE A DECISION WHEN THE WHEREABOUTS OF THE MUFFIN MAN AND AUBERGINES ARE ALL UNKNOWN?

Then again, what if the aubergine harvest has been plentiful and the chef can prepare your chosen dish? How are they going to prepare it? How much pasta will they use? Will there be oil? Will there be butter? How will it be arranged? Will the sauce be served on top of or mixed into the spaghetti? Exactly what kind of concoction should you expect? Also what if you can’t even get that far and can’t make a decision as to what to have in the first place, either because there are too many options or not enough safe ones? When it comes to people going to restaurants a little bird told me (a very little bird. about half the size of Tweety Pie to be exact) that people chose what they “fancy,” but again when you have an eating disorder and find most of your decisions controlled by calories and grams of fat, what exactly does it mean to “fancy” something?

Even when food is chosen and aubergines can be found in abundance, the worries don’t end because then you have what I would say is the hardest thing about going out for food and the thing that I worried about most after this news about a snack out had been broken to me: eating in public. Indeed the choosing from a menu worry wasn’t even what made me anxious about the excursion as when I went out for snack with my nurse I actually took the food with me to the coffee shop from the hospital (not that that is technically allowed in terms of coffee shop table taking up without making a purchase regulations, but when you are terrified and have an eating disorder you don’t give a damn about the rules!), so it wasn’t the menu issue but the eating in public part that was troubling me.

Truth is, when I eat I prefer to do it in private because even though I am well aware that other people have too many things on their minds and in their lives to have space to think about what is on my plate, I am always paranoid that everyone around is looking and judging me for every mouthful that I consume. Why do I care what random strangers have to say about my choice of snack of an afternoon? I have no idea. Why do I think that a business woman on her lunch break or a student cramming for an exam over an espresso and a laptop, care about whether or not I eat a hobnob? Who knows, but regardless of the reason, I do care and I care a lot. For other people I do not see the act of eating as something to be ashamed of at all but when it comes to me there is something so guilt and shame filled about it that the idea of eating in public is sort of how I imagine the idea of showering in public would feel to most people, aka self conscious and like you want to throw a sponge and curl up in a ball so nobody can see you.

No matter what you do or what you eat, it feels like everyone is staring at and judging you, even if you can see for a fact that others around you may even be eating more than what you have on your plate and are not actually looking anywhere near your direction. When I was out for snack there were plenty of people busy reading papers over plates far fuller than mine, yet still I thought that they were somehow looking at me with some kind of laser vision and thinking that I was greedy for attempting what I had before me. It was so bad that just to get through the snack I had to close my eyes and play that childhood game where you imagine that because you can’t see other people ,they can’t see you either (side note: it is surprisingly hard to eat a snack when you can’t actually see it…).
Somehow I got through it using my head down, eyes closed, just keep munching method but still it was a horrendous experience and one that I am not planning to repeat in the near future or ever if I can help it.

Overall then, though it would seem that the idea of eating out in public, either for a snack or a meal, is some kind of treat to be looked forward to, when you have an eating disorder, it really isn’t that simple a task nor is it a particularly enjoyable one either. Like I said, I know I for one am not going to be attempting such a thing again voluntarily simply because even without the ordering stress and malarky it is the actual act of eating in public and being judged (however irrational that thought may be), that causes all of the anxiety. A snack out in a coffee shop may be a piece of cake physically, but in practice I can assure you that it certainly isn’t! PLEASE DON’T EVER MAKE ME DO IT AGAIN!

Take care everyone x

EatingPublic

The Pressure To “Get Better” When You Are Struggling With Mental Health Problems

/ bornwithoutmarbles / 7 Comments

It is official. After five and a half months of being cooped up in hospital with very little interaction with the outside world, I finally have a discharge date and I will be going back home on February the 20th. Considering this hospital admission has been possibly the hardest and most traumatic of my entire life so far (not that I am planning on having another one to top it), I am thrilled, but at the same time I have to admit I am a little scared because the pressure for me to do well when I go back home is overwhelming. Indeed I have had to make a lot of promises in order to get this discharge date agreed, and every day I am starting to doubt a little more whether these are going to be promises that I can keep.

It may be a surprise for some of you reading this to hear that I have a discharge date, considering my posts of late. After all it is only a few weeks since I was writing about the difficulty of being on 1:1 observations and living with a tube up my nose and I will admit this has all moved ahead fairly quickly. To be honest though, I think staff and I have finally come to realise that we have come as far as it is possible for me to go right now and any more time spent in hospital is simply going to be detrimental from now on. As you will know from my post about the body recovering faster than the mind in recovery from an eating disorder (a post you can handily read here…The Difficulty When Mental And Physical Progress Move At Different Speeds In Eating Disorder Recovery), I have been getting rather overwhelmed with the rapid physical progression of my body and weight gain side of things and I really am at a point where I cannot take it anymore. With every ounce of weight I gain my head is screaming louder and louder and the ability to stay alive and simply keep breathing is becoming more and more unbearable to the point where suicidal thoughts and urges to relapse are at an all time high. (God this isn’t a very jolly blog post is it…don’t worry I will try and fit in a knock knock joke or something soon to brighten things up a bit).

On the day that you read this (if you are one of those extremely wonderful keen beans who read my posts on the very day they are uploaded….high five to you and a chocolate chip cookie if you are one of them), my discharge date will still be two weeks and a day away, but in reality I have already checked out of treatment mentally. Then again I suppose you could argue that for the duration of this admission, I never really checked in (it has been five and a half months and I still haven’t fully unpacked and set up my room because I refuse to accept that I am a patient here even now).
I think inpatient admissions for mental health can only ever really be beneficial when both staff and patient are working together to the same end goal, but this time around I have been in such a dark place that I have been finding co-operating impossible and it has very much been an admission of having things done to me, staff feeding me when I was unable to do it for myself and staff keeping me safe because being left alone was too risky even for five minutes. Admittedly, for the past few weeks I have been eating without the tube and keeping myself safe, but that is only with the end goal in sight of going home, and now I am reaching that goal I am not sure if I can carry this good behaviour on. Unfortunately though, like I said there is a lot of pressure for me to carry on because in actual fact, me going home at the end of this admission was never really the plan.

Indeed with the way things have been lately, my parents have been saying that they do not want me back in the family home for the sake of their own mental health. These illnesses may look from my blog that they are only killing me but they are killing them too, so the plan has been for me to move to a more long term hospital. However, though I have been on the waiting list for places you can stay in for over a year, no beds have been coming up (a shortage of mental health beds being available in the NHS?! How shocking and unheard of!) and as I said, since that blog post I linked to earlier, staff and I have realised that I simply cannot wait anymore and that I need to get out of here now.
It may sound harsh to say that my parents have said that they do not want me living at home at the moment but to be fair to them that isn’t exactly what they have said and is only how I have taken it. In actual fact what my parents have said is that they cannot stand having my illness in the house anymore, and after 15 years of dealing with an utter lunatic in their living room (and other rooms of the house of course…I do move around sometimes … I just specifically mentioned the living room for alliteration purposes…) who can blame them? However, as someone who struggles to distinguish between what is “me” and what is “the illness” in my head, them saying that they do not want my illness in the house is very much the same as saying that they do not want me either, seeing as the two in my eyes are so inextricably linked. I know there will be people commenting to say that there is a Katie aside from the mental health stuff and that is very kind of you but really, in the past five months, Katie hasn’t been around much if at all.

Because I was never supposed to be going home then, in order to get my parents to agree to the plan, I have had to agree to live by certain very strict rules to stay in the family home. There are many of these rules but overall they cover general things like agreeing to maintain my new unbearable weight (I don’t even think I will be able to leave the house even when I am “free” because I simply cannot stand the idea of people seeing me with all of these extra kilos I have gained), agreeing to stick to my medication (a medication I hate with a passion due to the side effects) agreeing not to harm myself and agreeing to keep eating. When I made all these promises that I would be able to do these things I honestly meant every word I was saying, but as time has gone on, the doubts have crept in. When I agreed to these conditions initially I was several kilos lighter than I am now, but at this new weight I really don’t know if I can manage and the harder it is getting.

I think there is so much pressure for me to stick to things this time round though because the consequences if I don’t are extremely dramatic. I will be blunt, in my head right now the only thing I want to do is relapse and lose weight, I cannot stand how I feel now in my head or my body and the urges to give up are so strong I might explode, but at the same time I know that if I do, I will quite literally be homeless and back in hospital, neither of which are particularly appealing options. So what do I do? How do I deal with this overwhelming pressure for me to “be well” mentally when it all feels so out of my control. Physically I know what I have to do to be physically well enough to stay out of hospital but how do I manage that when I have pressure to do the opposite piled right alongside the pressure to stay where I am now? Well, if you were looking for answers, I am afraid I don’t have any (and I am afraid I don’t have any knock knock jokes at this point..sorry for that), all I have is pressure, buckets and buckets of it.

I think that for anyone leaving an inpatient admission it is hard because there are so many expectations to be upheld. Will you be able to uphold the changes you have made/carry on with any good behaviour? How? How long for? How long until the million pairs of eyes watching your every move tell you that you haven’t done it well enough and are going to have to be recalled.

What I want to raise the awareness of however is exactly what I have been talking about , the pressure to be well when you leave hospital after a mental health admission which is supposed to have “helped” you, pressure which causes a lot of stress you really don’t need because you are already stressed enough as it is. It is ridiculous really, with physical illnesses you never get this pressure which is why I struggle with this idea in society that mental illnesses are any more in your control. When I left hospital after my appendix there was no pressure to not have another organ explode (although I am rather glad one didn’t and hopefully such organ fireworks never happen again), yet now, leaving a mental hospital, pressure is all I have. I am not sure what will happen when I get home so I guess we will have to see, all I know is that I am going to have to do my best because I cannot afford to not succeed this time. I wish that felt like a manageable task. It just feels very much like a case of knock knock, who’s there? A very scared and messed up in the head person who really wants to stay home but doesn’t know if they can manage (haha see! I told you we would get a knock knock joke in there somewhere…)

Take care everyone x

Pressure