Anorexia And The Fear Of Being A Healthy Weight

When people hear that I have anorexia and am scared of gaining weight or scared to maintain a healthy weight, they always assume that this is because I am scared of getting (or eventually being), “fat”. In actual fact, this is not because I fear getting or being thought of as fat or large at all, and funnily enough being fat is probably one of the things I worry about the least when it comes to anorexia. 

The majority of my friends are a healthy weight, (by which I mean a healthy BMI which is of course not a foolproof way to measure anyone’s health due to all the many variables at play, but for now it is the best we have). Some of them have always been a healthy weight and have never had an eating disorder, but there are others I have met in treatment during times in which they were very underweight, that have since regained to a healthy place in their quest for recovery. Sometimes I was in hospital with them for the entire weight restoration process, but never at any point did I ever look at them gaining back the weight they never should have lost and think that they are “fat” once their BMI has returned to a healthy range. On the contrary, without exception, I always think people look more beautiful and fabulous than ever before when they have gained the weight. It is like seeing a shrivelled up flower come back to life again and bloom brightly coloured petals all over the place, and in seeing this surely I shouldn’t fear being a healthy weight myself? After all, who would want to look like a shrivelled up flower when you could look like a fresh one at the peak of its colour? I know I certainly don’t, so why do I fear being a healthy weight? 

When it comes down to it, it is all to do with the way I feel on the inside and the way in which people perceive me. Inside, I feel broken, scared, weak, sad and very much shrivelled in every sense of the word. When I am underweight people treat me as if they know all of these things. They don’t ask me what I am doing with my life or how I am because they know I am too unwell to be doing anything in life, which saves me having to tell them these things and acknowledge the catastrophe that is my current situation myself. When I am healthy however, they assume that my mind is naturally in the same corresponding state, and when that isn’t the case, it can be incredibly frustrating, confusing and dysphoric. 

To explain it in another way, I would like you to imagine that I am a penguin (and if you know me well enough that will not be too much of a stretch. Literally all you need to do is add a beak and the ability to eat raw fish, I mastered waddling before I could talk.) 

Inside I know I am a penguin, and I feel like a penguin. I know that I like sliding across sheets of ice on my tummy, I know that I can swim faster than an olympic athlete, I know I can catch fish with ease, I have fully accepted the fact that no matter how hard I flap I will never be able to fly and I know that in terms of career, my goals are to waddle around various agencies to pursue my dream of becoming an extra in the children television show “Pingu” or to model on the front of the wrapper of a chocolate biscuit that is named after me. When I am underweight, everyone else around me can see that I am a penguin. Fellow penguins nod to me in the street to acknowledge our solidarity in species, when I go to a pub the bar keeper knows I will want ice in my drink without me having to ask and friends compliment me on the elegance of my waddle and ask how I achieve such shine on my beak. If they hear about an audition for an actor to play Pingu’s second cousin twice removed, they call me right away and offer to give me a lift, but when I am a healthy weight, they see that audition sheet and don’t even think of me. 

When I am a healthy weight, nobody can see that I am a penguin, instead, they see a meerkat and treat me accordingly. When I nod at my fellow penguins knowing that I am one of them they look at each other aghast as to what this fluffy stranger is trying to say. People keep putting me in sand pits so that I will feel more at home, they buy me air conditioning systems to install in my desert home because they know how hot it is in my country of origin, I am offered jackal repellent to help me avoid predators and passers by ask me for help comparing different offers they have received on their car insurance. Nobody is unpleasant or horrible, but still I hate it and want to scream at them because inside I know that I am a penguin. Jackals don’t hunt me in the arctic! I hate sand because it gets stuck in my flippers, I am cold enough as it is without air conditioning units in my igloo and I know nothing about car insurance! When I am a healthy weight there is such a disconnect between the meerkat people see and talk to on the outside and the broken, cold little penguin on the inside that it almost feels like being two different people or that people can’t really see me at all. I feel I have to try and act like a meerkat to live up to their expectations yet I don’t know how. When I am underweight, people see the penguin I know and feel that I am, I don’t have to pretend, I am instantly understood and treated as the waddling little creature I am. 

That is why I fear being a healthy weight, and from what I gather from friends with eating disorders that is also why they fear it too. It is nothing about fearing being fat or looking unattractive, it is fearing being seen and treated as something or someone that is totally different to the person you know you are in your heart, it is fearing being put in a sand pit that burns your flippers rather than being taken ice skating for a pleasant afternoon of sliding on your tummy. 

I realise this whole thing is a really difficult thing to understand (and as you can probably tell, a difficult thing to explain what with all this talk about penguins and meerkats), but I hope I have helped it make some sense. I have anorexia, but I am not scared of being fat, I am scared of people thinking that I am “ok” when inside I feel anything but. 

Take care everyone x 

Meerkat

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

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

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

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

The Difficulty When Mental And Physical Progress Move At Different Speeds In Eating Disorder Recovery

In a few days time, I will have been in hospital for 16 weeks aka a grand total of 4 months, and because of this, I am often being asked questions like “How are you getting on?” or “are you feeling better?” which are both very complicated and difficult questions to answer when you are in treatment for an eating disorder. You see, on one set of paper work, things are going rather swimmingly and I am indeed doing much better, yet on the other set of paper work in my opinion, I am actually feeling and am “doing” worse than I ever have done in my life.

Oddly enough, this discrepancy between paper works is not because I have two very different doctors with opposing ideas writing sets of notes about my progress, but because when it comes to recovery from an eating disorder, there are two very distinct and different sides to it, the mental and the physical, and unfortunately these two sides do not work as sleeping otters do (aka hand in hand – yes, fun otter fact for you, otters hold hands when they sleep to make sure that they don’t drift away from each other. Apparently they also make waterslides and play with pebbles. Conclusion: Otters are cool).

Indeed the two sides to eating disorder recovery are so separate that I think that asking someone in treatment for an eating disorder how they are, is a question that needs to be asked twice, once for each side of recovery, because otherwise getting one coherent answer is impossible.

To be fair, towards the beginning of my admission, the physical and mental sides of how I was doing were fairly in sync. Mentally things were a bit all over the place and physically things were too. This then continued as I struggled to work with the program at the eating disorder hospital, until the introduction of my NG tube and since that most unwelcome introduction, everything has changed, in my eyes, for the worse.

Before, when I was mentally struggling and didn’t feel able to manage food, I was able to avoid it which obviously didn’t help my body very much but it prevented my anxiety levels from getting worse. Now though, since the NG tube, I have a constant and unavoidable source of nutrition and it doesn’t matter how I feel, food cannot be avoided. If I don’t eat, the food still goes in, and consequently my mind is in utter turmoil. My body on the other hand is as they say “loving life” and ironically, it is killing me.

Seeing as food is unavoidable now, I have been following my meal plan in one way or another for weeks and the affect this has had on my body is dramatic. I am gaining weight faster than I have ever gained weight before (perhaps because I have never had such an unavoidable source of nutrition stuck up my nostril before), so health wise, I am “improving”. I am no longer at a weight where I require a wheel chair, I am now able to stand in the shower for long periods of time, even on one leg (I am a fantastic flamingo impersonator these days), and when I get out of bed in the morning, the world doesn’t swim before my eyes and go black. Objectively these all sound like good things and for the medical professionals and my friends and family, these are good things but to me, these are terrible things.

I really don’t know how to explain this idea to people who may not have eating disorders as I know that to most people it sounds absolutely ludicrous. Physical health, the ability to stand in the shower and walk down the corridor are abilities to be appreciated not feared, but when you have an eating disorder, these abilities mean entirely different things.
To me, not being able to stand up without things all going fuzzy was a sign that I was “behaving” myself, a sign that I was doing a good job at punishing myself so the guilt I felt at being alive was lessened. Now though, I am unable to “behave myself” by not eating because even if I don’t eat the food will go in without my permission, so with things not going fuzzy, it is like a sign that I am doing something “bad” (even if it isn’t always me who is doing the eating), and I guess I am feeling all the guilt and shame as anyone else would were they to do something they thought was bad, like stealing or punching someone in the face.

Now I take up too much space in the world and with the weight going on as it is I take up more and more space each day, which is something I have always struggled with. When you hate something you want to make it as small as possible (or you want it to disappear altogether), you want it to take up as little of the world’s space as possible so as there is more room for the good things. In gaining weight I feel like a weed taking up too much space in the flower bed and stealing all the sunlight from the marigolds.

It is incredibly hard to watch this body you hate, morph in front of your eyes into this thing that is getting bigger everyday, getting “better” everyday whilst inside you are all the more depressed and tormented.
I don’t have any idea if I am making sense here because to be honest I am on so many medications right now that my brain is not functioning but if I had to resort to the good old Born Without Marbles way of explaining things, aka an analogy, it feels like my body and brain are one of those cars people drive off in after a wedding with tin cans on the back and “just married” scrawled across the rear windscreen.

My body is the car and as it gains weight it is zooming off full speed. Meanwhile my brain is the collection of tin cans tied to the back, being dragged along and through all of this road that it is not ready for, each can bouncing and denting, bruising and breaking a little more with every mile that passes. My body gains weight, my brain cracks a little more, I feel more broken, depressed and bruised and the faster my body goes the further it is from my brain which is actually all the way back at the starting line. I guess this analogy isn’t perfect because you could say “but your brain is moving in the right direction like your body if it is tied to the car” but that is where the analogy fails because that is not happening at all, like I said, as the car moves the brain just gets battered and even staff have admitted that in the past few weeks things have mentally become worse and worse as time has passed and weight has gone on.
Christmas day is a perfect example of this. When I woke up on Christmas day I was weighed (NOT something I asked Santa for and if I ever wake up to a set of scales in my stocking on Christmas morning again I swear to God I am marching to Santa’s grotto to give that beardy man a piece of my mind…and his scales back), and I had gained a lot of weight. On paper then and to the doctors, my body had got “better” but mentally the shock of it all had such a strain on my mind that I totally lost it. Within minutes I was having to take medication to calm down from the anxiety and agony and when my family came to see me for our two hour visit, the visit wasn’t better for the weight gain, it was worse. It should have been better logically, my body was healthier than the last time they had seen it but in becoming that way I became so upset, distressed and anxious that I had what we shall simply call “ a little incident” and I had to ask my family to leave early.

It is that which I think illustrates my point best as to how impossible it is to answer the question as to “how are things going” when you are in recovery for an eating disorder. Am I better? In a way, yes and I am getting “better everyday”, but in the other more important mental side am I better? Am I progressing? Not at all. I hate myself more than ever, I am more unhappy than ever and I feel more trapped than ever in a body that I no longer relate to. The distance between my body and mind is so great now that I have asked staff if there is any chance we can slow down on the weight gain so that my mind has got a chance to catch up but they are refusing and it all feels like I am being dragged and pushed too far out of my comfort zone. I am in hospital being treated for an eating disorder and the physical problem is being taken care of by a tube, but the mental aspect is being torn apart and I really don’t know how much longer I can handle it.

It is so frustrating trying to explain all of this and I guess in the end the main thing I want to do at the end of this blog post is apologise because I feel like I haven’t made any sense and that I have wasted your time with my incoherent waffle. Like I said though, I am on all sorts of crazy meds at the moment (to calm me down because I am in so much distress due to this whole struggling mentally with the physical progress my body is making right now when I am not ready for it), so please blame those meds and not my inabilities as a writer. I don’t understand half the things that are going on at the moment so explaining them coherently is somewhat difficult. I really am sorry. I am just so battered. I hope this makes some sense at least or that I have got the point across in some way that physical recovery and mental recovery for an eating disorder do not go hand in hand and can sometimes be literally travelling in opposite directions. “How are you doing?” is such a simple question but good lord when you have mental health problems is it a difficult one to answer.

Take care everyone x

RecoveryCar

Is It Possible To Be Too Open About Your Mental Health?

TRIGGER WARNING: This blog post contains reference to certain medical treatments that can be used with people with eating disorders, so if that is something you would find unhelpful then please do not read it for your own safety. If you are like the witch in the Wizard of Oz who melts when coming in contact to water, THIS is your warning to STEP AWAY FROM THE FLUME.

In both the mental and physical health worlds, confidentiality is a BIG thing. When it comes to your wellbeing, there are a lot of rules between professionals, your medical notes and what can or can’t be said in front of friends and family.
Want to keep that random extra hand sprouting from your lower back a secret from Aunt Enid so that she doesn’t start knitting you an extra mitten every winter? No problem, medical confidentiality has got you covered (unlike your third hand which is now not going to have a mitten for Christmas).
Don’t want people at work to know that you have a condition that causes you to temporarily morph into a teapot whenever stressed? That’s fine. Tell the doctor and they will keep that tidily hidden away on a computer protected with lots of codes and National Health numbers that would make your deepest medical secrets hard to find, even if people were looking for them.
You see, when you are dealing with hospitals, everything is kind of like some kind of James Bond spy film, it is all very hush hush, very top secret, very “who can we talk about your bunions in front of” (which, coincidentally was the alternative title for the 1964 classic “Goldfinger” but Shirley Bassey didn’t want to sing about Bunions).
Not only is medical confidentiality important though, it is also fragile, and like all fragile things, this unfortunately means that it can very easily, even accidentally, get broken.

My question however, is if it is YOUR personal medical confidentiality, is it ok/are you allowed, to break it yourself? Are you allowed to be “too open” about matters that other people would usually keep private, in the interests of raising awareness of those issues?
Not to talk about any single person or specific situation in particular or anything (THIS ENTIRE BLOG IS ABOUT ME AND MY VERY CURRENT AND SPECIFIC SITUATION), but is it possible I ponder, for one to be too open say, about a mental health condition and the treatment that may be involved as a consequence?

Like I said, we are not talking about anyone in particular (THIS IS ALL ABOUT ME), but as a very rough, vague and unspecific example, lets go back to Monday the 27th of November 2017 at 10:01am when a link to a post on this fabulous mental health blog you might have heard of, was uploaded to try and give a rough update to readers of said blog regarding the situation (or rather, the colossal mess of a situation) of the writer.
Oh screw it, I cant keep the secret anymore. Ok yes! You are right! I am talking about my blog aka this blog and my situation last Monday when I tried to write a post to tell everyone the latest news and was incredibly vague about everything, which is unusual for someone who usually speaks honestly and openly about everything personal and mental health related. Why was I incredibly vague? Well, because I was scared after staff had raised concerns about me sharing certain things on my blog, which really freaked me out and had me very worried and confused.

Thing is, when it comes to medical confidentiality, I kind of see it like you see a piggy bank, it belongs to you, you can look after and protect it, but at the same time, you and you alone are allowed to break it.
Were you to go over to someone else’s house, find and destroy their piggy bank and run off with all the money inside (or say medical details), that would be wrong on many levels. It would be theft, it would be a breach of someone’s privacy, destruction of their property and the murder of a perfectly good ceramic piggy. If however you have your own piggy bank and, after several years of amassing various coins of experience, decide that you don’t mind sharing those experiences and spending those coins out in the world in the hopes of making a difference, and consequently smash your own ceramic oinker to smithereens with a mallet…I think that is ok, because it is your property, your information to share, your little piggy to destroy (and then mourn over appropriately of course).

It is still important to be responsible for your information of course, and I don’t believe people should, as it were, shove their information coins into other peoples faces whether they like it or not.
There should always be warnings to alert people when someone is talking about a sensitive issue that could be triggering or harmful to others, so that they as a reader can use their own personal responsibility to choose to remove themselves from potential harm. Nobody should be forced on a flume and plunged into a bath of emotions without the opportunity to get their rubber duck out but similarly, if you know you melt when you come in contact with water, maybe don’t go on a flume.

Admittedly this is more complicated with things like mental health problems which can sometimes cause you to do things, read things and get involved in things you might know deep down are harmful, but we can’t all be silent about everything, and if Donald Trump is allowed his own twitter account then I like to think I can spout my nonsense freely and use my free speech on my blog in my little corner of the internet.
That is how I see all this, all the drama that I have been caught up in over the past week about what it is and what it is not ok to share, whether there are some things that should be kept confidential and whether you can or can’t be “too honest” about personal matters, and it is that opinion that has led me to just throw caution to the wind and write this post being honest about things anyway.
This is of course merely my opinion, and I am sure there are many people out there who will disagree, but there we go, we can’t all like mashed potatoes made by the same recipe, opinions vary, some people don’t like lumps, some people don’t like pepper and others don’t like to read blogs about people who talk about mental health (weirdos). End of.

So what is going on? What has been happening? What have I been skirting oh so daintily around for the past fortnight? Well I will tell you because like I said, this is my piggy bank and if I want to take a mallet to it then I damn well will.
Basically, as you know, I have been in a psychiatric unit being treated for my eating disorder for the past 10/11 weeks, but things were not going well and I was not managing mentally or physically with any of this recovery business. It was then decided that we had reached a point where it wasn’t safe to keep me where I was anymore (which feels so weird and confusing to write as I still adamantly believe that I am perfectly fine and do not need any of the things going on around me, but that is a topic for another time). Anyway, as a consequence of various decisions regarding my mental and physical health last week, I had a week or so away over to a medical ward, and, if this post is going up in time and all the professionals stick to the current plan, I will hopefully have been transferred back to the mental health place on the Friday before you are reading this.

When you have an eating disorder there are a lot of physical complications that can happen as a result and there are sometimes a lot of things that may need to be medically treated as well as mentally, but the main reason for this transfer was so that I could be fitted with an Nasogastric tube (aka a tube that goes up your nose and then down into your tummy so that you can be given nutrition without having to eat it yourself if needed).
Some eating disorder units can do this procedure on site themselves and many do, but the one I am in has been unable to until now (hence why a few weeks ago I was talking about maybe being sent to Glasgow or somewhere else across the country). With no beds becoming available in time though, I had to just pop off to get it done on the medical ward and have some treatment over there. Like I said though, if all goes to plan, by the time you are reading this, I will be back on the mental health ward, still with my tube for a bit now it is safely up and running, but working to have it out as soon as possible which would be nice, as I am not thrilled about this new accessory (I would have preferred a bowtie but alas you cannot give someone nutrition through a bow tie. Not even a sparkly one). It was this whole tube thing that caused the staff to get a bit over excited with the “shushing” (picture a librarian after several hundred cups of espresso).

If I am trying to see from their point of view, I guess I can kind of sort of understand on some level. For example, I know there are some people who might find talk of NG tubes triggering, and unfortunately there are occasions and certain sufferers/people who see them as something to take pride in, something that proves they are “really ill”. This is of course ridiculous as every eating disorder is equally severe and serious and everyone is “really ill” regardless of whether they have been through certain treatment options or not. Even if you have never received any treatment for an eating disorder you are as ill as someone who may have been in therapy for years, and the last thing I would ever want is to give a message on my blog contradicting that.
However at the same time, whilst a tube is something I do not think one should be proud of, I do not think it is something to be ashamed of either and that was what stressed me out so much last week. I was all there ready to go ahead and write as per usual, and suddenly everyone was telling me that what I wanted to talk about was inappropriate, which had me paranoid that I should be ashamed of what was going on or that this happening meant that I had let everybody down by “failing” to get better, and thus not say anything at all just to be on the safe side. To be honest I don’t think a tube is anything to feel particularly anything about. It just is. Sometimes they just happen to get fitted to people who have eating disorders to help them try and get out of being rather stuck in a highly sticky syrup/velcro/superglue bound/sellotape/plaster situation.

If you are reading this and think that me admitting any of this is to be too open about mental health/confidentiality breaching then I am honestly sorry, but like I said, talking about mental health and my experiences within the realm of mental health treatment is something I am passionate about both in terms of reaching out to others, raising awareness, breaking stigma and misunderstandings about various illnesses and overall making people feel less alone and not as weird and isolated as I did when I kept all of my problems bottled up and never had anyone to relate to. Maybe I am breaking a piggy bank, but it is my piggy bank to break and it has been my decision to be honest about it.

I won’t go on about it any more now because writing this much is scary enough as it is, but I hope in the future I will be able to write about how this experience and tube feeding in general has affected me and how it can be used in treating people with eating disorders. It isn’t a nice topic, nor is it a nice experience, but it happens.
Now if you don’t mind, I am off to hide under my bed as I do when I post all scary blog posts that could potentially make someone angry with me/get me into trouble (I also need to hide from the cleaner…that is one thing nobody warns you about when you get a tube…when you have one in there is a genuine risk of being mistaken for a Henry hoover and dragged across a carpet snorting crumbs for three hours…) I hope this has been ok, I hope having this tube doesn’t mean you feel that I have let you down and if not I really am very sorry. I promise I am still trying.

Take care everyone x

PiggyConfidentiality

The Latest Mental Health News – When Mental Health Treatment Gets Rather Complicated

*Blog opens on a black screen, dramatic music plays, lights flash up to show the bespectacled author of Born Without Marbles sitting in front of a giant spinning globe, wearing a suit and looking very dapper* (Please note that it is the author wearing the suit and not the globe who has instead chosen an inflatable rubber ring as a wardrobe choice, for he is a globe with serious Saturn envy). Author holds up large piles of paper, shuffles unnecessarily, lays them on desk and then begins to speak*

Happy Monday everyone and welcome to the news. Not just any news though, for this is strictly the Born Without Marbles News.

*Globe with inflatable rubber ring spins for dramatic effect…more shuffling of paper*

Whenever you turn on the news these days to see what is going on in the world, the stories you see are usually incredibly depressing tales of natural disasters and various wars between countries who decide it is a better idea to settle their differences by blowing each other up rather than sitting down for a nice cup of tea and talking through their issues. If I were head of a country I know that would be how I would want to resolve any conflicts between nations (I would even have a special teapot for such occasions and there would always be biscuits rather than nuclear bombs or machine guns involved, which is nice because biscuits are far less toxic, noisy, and overall they are much tastier.) Today though I am coming to you with an update in news that is far more jolly, far more positive and exciting than anything you might have heard from some suited person on the television sitting behind a desk shuffling papers about, for I have GOOD news. What news? I AM OUT OF THE MENTAL HOSPITAL.

*Globe spins very excitedly and a party popper is released from an unknown location*

That is right folks, after 9 weeks I am off that psychiatric corridor and into the wonderful world of freedom and…hang on…wait…news just in through the ear piece…ah…yeah…Ok so good news we are out of the mental hospital…bad news is scrap the freedom bit as it is only because I have been transferred to a medical bed for more intensive treatment until I am stable enough to return to the psychiatric unit…hmm…that kind of puts a downer on things…this is awkward…but still yay to no guns or nuclear bombs in this broadcast!…And I do have biscuits!… *Holds up a pitiful broken packet of National Health Service own brand digestives, smiling desperately as a waterfall of dusty crumbs cascade into a pile on the floor*. Clearly it is a lot more difficult to be a cheerful news reader than I thought…

*Globe stops spinning…awkward silence…very awkward…like really awkward*

But back to the news update! As you know, last week I was talking about how unpredictable life is when you have a mental health problem and how currently things to do with my personal care and situation have been rather up in the air. On the positive side this last week has brought about decisions and actions that mean I am no longer up in the air, but have been brought back to earth out of the floaty confusion with a bit of a bump.
I think I mentioned the chance of me being transferred to another eating disorder unit last time because I really haven’t been managing where I am, but over the past week, no beds became available in time (SIDE SHOUT OUT TO THE GOVERNMENT STOP USING MONEY TO BOMB THINGS AND PAY THE POLITICIANS’ COFFEE BILLS AND MAKE MORE HOSPITAL BEDS FOR MENTAL AND PHYSICAL HEALTH FOR GOODNESS SAKE), and it reached the point where we had run out of time and I couldn’t really wait any longer. Thus another transfer had to be made, hence the update that I have now been moved to a medical bed to treat the immediate physical health issues that now need a bit of prioritising over the mental health side to having an eating disorder…

…And unfortunately, as brief as that update is…that is, frustratingly, all I can tell you this week. You see, a lot more has happened that I want to talk about because I am always one to be honest about mental health and do all that awesome awareness raising…

*Waves “I like to raise mental health awareness” flag*

…but recent discussions have taken place over the last week that mean that for now…that really is all I can say about what is happening, where I am and what medical treatment I am currently undergoing. To be honest it is all very “red tape” and “confidentiality” based stuff that I don’t quite understand but would rather clarify with official people first rather than getting myself into any trouble, which is really not needed in the Born Without Marbles world right now, as figures show that levels of troubles are already high above acceptable levels.

*Shows graph with a big red line going up. Arrow points to line labelled “Things that have gone wrong in 2017”…Cue a bit more paper shuffling and a random act of origami in which the aforementioned graph is folded into a lotus flower perfect for adorning a dinner table…It is passed to a member of the sound crew who lays it on a table at which 10 very important people then dine whilst commenting on the beauty of the lotus flower. They eat Salmon en croute*

Hopefully next week or at least sometime in the future I will be able to explain a bit more about what is going on but for now I just wanted to write a brief blog this week to update everyone on the fact that in terms of my mental health and mental health in general, I am personally in one of those “when mental health problems cause physical health problems” situations. Just wanted to at least say that because I also wanted to reassure people out there who may have been lovely enough as to send me concerned messages recently, that I am somewhat ok/being very well looked after and, though I may be hating it with every penguin loving grain in my body, I am in what other people would argue is “the best and safest place/situation right now”.

So yeah, I am afraid that is the blog post for this week. I really am sorry it was not the best/most exciting/most awareness raising but I guess it has raised an interesting discussion about confidentiality when it comes to talking openly about mental health, which I will be writing about a bit more when I am up to it, even if I am still not allowed to go into my current form of medical treatment sometimes used on people with eating disorders.

*Random party popper is released because this is the the Born Without Marbles news update and thus random party poppers and things that do not make sense are required at all times*

Anyway, I hope you are all well and know that I appreciate you all very much, especially if you read/watched this news broadcast to basically let everyone know that normal blogging activities will resume but I am currently somewhat out of order right now…kind of…although now I look at all I have said that is actually quite a lot of words for someone who thought that due to “circumstances” a BRIEF apology update blog was all that was possible this week…Note to self…learn to shut up…like seriously…for example right now…TAKE CARE EVERYONE X”

*Blog cuts to a giant map covered in rain clouds and lightening bolts where Gerry was supposed to be presenting the weather but isn’t because he got bored with the main part of the blog news for not being specific or interesting enough and went to the local bakery to get a sausage roll. Ironically he got rained on having forgotten his umbrella because he had not predicted a high chance of showers…Switch to spinning globe that aspires to be Saturn…fade to black*

NewsUpdate

Things You Will Need When You Are Admitted Into A Psychiatric Hospital

Before you move house, you need to pack your life into a van. Before you go on holiday, you need to pack suncream and the inflatable dolphin into a suitcase, and before you go out rambling in the wilderness, you need to pack a picnic in a picnic basket (preferably one of those wicker ones with a gingham tablecloth and lots of little boxes inside…one must never go out rambling unless one is accompanied by a picnic).
There are however some things that are a little less fun to pack for, those being admissions to a hospital or inpatient psychiatric unit, which is nowhere near as much fun as a picnic (and involves 100% fewer wicker baskets…By God I love a wicker basket).

When I decided to write a blog about this topic I was therefore going to call it “Things you will need to pack for an inpatient admission” but as I have started writing I realised that sometimes when it comes to mental health hospital admissions, they are not planned like a two week cruise around the Mediterranean, and there is seldom time to “pack”. Even when an admission to a unit has been planned, you are going to be so nervous about it the night before that you forget to pack anyway, so instead here I thought I would offer a little help to all those who find themselves in that situation by providing a list of things that you will need during an admission to a mental health hospital.
It doesn’t matter if you are making a list of things to pack the night before or simply things you now need to start begging family/friends/online delivery people to bring to you because you were not prepared and only came onto the ward with a one way train ticket to Exeter (trust me, it happens…). Whatever the situation, this blog post is here for you, so lets get on and start this fabulous list of things you will need during an inpatient admission to a mental health hospital (things you will need if you have fabulous taste like me that is…)

BASIC LIFE THINGS: You may think that this is a rather obvious logical point to make but remember, mental health admissions are stressful times where “obvious logical things” turn into “I like ducks”, and you would be surprised by the number of people who turn up to hospital without a toothbrush (warning, this may make teeth angry and cause them to phone the tooth fairy emergency helpline for immediate assistance. Don’t say I didn’t warn you.) So yeah…I am not going to list all the miscellaneous nonsense you may use every day, but as a general note to start off with, when you are in hospital, you are probably going to need a lot of the general nonsense you use everyday (toothbrush/toothpaste/underwear etc.)

MOTIVATION: Of course I mean this point in the emotional sense of the word, but when you are isolated in hospital it can be easy to forget why you are there and what you are doing in this inpatient bubble, so practical pieces of motivation to get you through are also essential. Things in this category can include photos of friends or family, motivational books about people who have been through recovery for your disorder, quotes or even little prompts to give you a little boost when your brain refuses to do the boosting for you (e.g taking something like a list of things you want out of life to have at your place at the table on an eating disorder ward to help at meal times). I have known a lot of people to go all out with motivation and to bring enough cards/quotes/photos to decorate their entire room into a cave of inspiration (if that is allowed on your unit and you are not in a stripped room that is), so if that would help you, do that. Personally though, I prefer not to put up too many decorations because I am always so hopeful about leaving that I refuse to accept the idea that I should settle because I may be there a while…

THINGS TO DO: When you are in a psychiatric hospital it is likely that there will be things going on. On the week days there may be things like therapy groups, 1:1 sessions and opportunities for visitors, but aside from all of those things and the “spare hours” that will be taken up by things like crying hysterically, you are still going to end up with a fair bit of free time, especially on weekends when it is quieter and a lot of patients may have leave. Keeping yourself occupied therefore is going to make time pass quicker and distract you (a bit) from what is going on. For example on my ward there is a current craze with origami and people are making paper cranes faster than I can count (I tried to get into Origami too and managed to unfold one of these aforementioned cranes into a normal square piece of paper again but apparently that “isn’t the point”). There are also patients who knit and live in giant balls of wool, people who colour with crayons, draw, and there are patients like me who get through the day either by writing or by tossing reality out of the window and reading to get lost into alternative fictional worlds (This week I read “The Secret Garden” a book I highly recommend for times in hospital when you cant go outside and see a real garden yourself.)

COMFY CLOTHES: The first time I ever packed for an inpatient stay, I put all of my nice going out clothes into my suitcase and took them to the hospital ready to co-ordinate my outfits every day so that I would “look nice” for the other patients. I also wore mascara to a place I was highly likely to start crying in upon arrival. I was an idiot.
Listen, I get it, people like to look nice both for themselves and for other people but let’s be real, a psychiatric hospital is not a fashion shoot (cameras are not allowed), and after five minutes neither you nor anybody else is going to care what anyone looks like because you are all too busy being caught up in fighting your head demons and managing general anxiety. Even if you are not worried about what you look like or what people are thinking of your sense of style, “nice clothes” are simply not practical. When you are in hospital you are going to want to be comfy. Imagine you need to curl up on your bed for a good sob or find that you are so anxious that you start having panic attacks and problems breathing. Maybe things have got a little bit out of hand and staff need to carry you somewhere, carry out a quick blood test or give you an injection to calm you down. All of those things are going to be a hell of a lot more pleasant (as fun/pleasant as being injected in the rear can be at least), and a lot easier/more comfortable if you are wearing comfortable clothes rather than a corset and, skinny jeans.
Don’t get me wrong, if you want to dress up because it makes you feel better/more human then feel free to do so. I know a lot of patients who still like to wake up, wear a fancy skirt and put make up on in the mornings because that is what works for them, makes them feel less “mental hospitally”, more normal and lifts their mood (I am not one of those people…) However, even the people with the nicest most fashionable clothes will need a onesie and a lot of baggy trousers for “those days”. I would also add slippers to this both because they are comfy footwear and make a nice slip slop sound as you walk down the corridors. Trust me, stiletto heels are not a good idea (they tear the evacuation slide…or am I getting psychiatric hospital attire confused with ideal footwear for planes…)

TACTILE/FIDGETTY DISTRACTION THINGS: When people get anxious, their bodies get filled with adrenaline, and to calm down, that adrenaline needs to be released. Often this can happen via what the professionals call “unhealthy coping mechanisms” and that is not ideal because…well…it is unhealthy, and therefore you need other practical tools you can use to keep your hands busy releasing adrenaline whilst the rest of you remains safe. These things are different from the “things to do” category because they are not things that require any particular concentration, brain power or coherent thinking, these are for the times when your head is so loud that you cannot remember the alphabet and just need something to cling onto. I personally have what is called a “Tangle” (this weird thing that can be bent into all different kinds of shapes), and a fidget cube. Other things people may use include stress balls, squeezable spikey rubber balls, fidget spinners and putty. Sometimes things like a pebble to hold or little pebbles to pass from one hand to the other can also be helpful, but I will leave that up to you to decide because some people may not find those items to be safe to be around in a stressful situation.

And now to the final category, the most important thing you will need for an inpatient admission to a psychiatric hospital…

SOMETHING TO CUDDLE: Enough said. I don’t care how old or cool you are, everyone needs a cuddle once in a while/all the time so pack a damn teddy bear for the love of God.

So there you go! All the things you could possibly need to survive an inpatient admission in a psychiatric hospital. Obviously feel free to take other things as well, but as a basic guide I would say this list is a good one to start with.
I should point out before I finish here that as well as a list of things you will need to take to an inpatient unit there is usually a list of things that you should not take (like sledge hammers…mallets are ok though), so on the whole as a final tip, when you are packing, stick to things that are softer and squishier than a pick axe. If you are currently in an inpatient admission or are approaching one I hope this list helps, and if you are not then thank you for coming along for the ride anyway! I am thinking of and supporting you all, wherever you are, you are not alone in your fight.

Take care everyone x

InpatientPacking

Five Things You Need To know About Re-feeding During Eating Disorder Recovery

Whenever you enter treatment for any kind of eating disorder, you will often be given about a million worksheets, pamphlets and photocopied passages from text books, about the mysterious topic of “re-feeding”.
Indeed, over the years I myself have been handed many of these scientific attempts to explain the various processes the body goes through during re-introduction of food after periods of starvation, and having been through those various processes multiple times, I thought I knew it all. I thought that when it came to re-feeding a patient with anorexia, I was an expert, an oracle of knowledge when combining my scientific genius (aka facts I memorised in text books) and personal experience. So arrogant and confident was I in my “know it all” attitude, that had I been asked to take part in the UK gameshow Mastermind, I would have chosen “the re-feeding process in treatment from an eating disorder” as my specialist subject and would have had a cabinet built for the trophy in my living room before I had even answered the first question. Luckily, nobody has ever asked me to be a contestant on Mastermind because if that had happened, I would have looked like a fool and would have had a very sad and lonely, empty of trophies, trophy cabinet.

Today then, rather than sit and mope with regard to my lack of trophies (and whopping great useless cabinet in my living room), I thought I would use my current situation as “person attempting re-feeding” to share with you the five things everyone needs to know about the re-feeding process when in recovery from an eating disorder.
This is not just the explanations that you get from the science books, this is the Born Without Marbles, real life, honest guide to get you through all the surprises that can happen during the re-feeding experience, even if you have been through it before and think you already know it all…

1. Taking it slow is important: I think there is often this misconception that the more food you can get into a person who has been starving for a long time the better, when really, that can be quite dangerous. When your body isn’t used to being given food, it sort of turns off and goes into a stand-by mode, so booting it up again is a process that needs to happen gradually. It is like if you had an out of work clown, to get them back into juggling you need to start again with 3 soft balls rather than going straight in with 10 flaming knives and a live alligator riding a chainsaw. When coming into hospital for example, people are often started off on half portions to build up from gradually over the space of a few days, to avoid the body going into too much shock and sending your electrolytes and cardiac functions all berserk. Now, this is not an excuse to let your eating disorder sneak in with “well, if it is dangerous to eat much even though you are in recovery, you should probably just eat a little bit of lettuce” because NO. All I am saying is that when you are getting back into the habit of giving your body food, you need to be gentle and start off slowly, preferably under medical supervision/working with a dietician to keep you both physically safe and to make certain you are gradually building up to the amount of food you need rather than sticking to the initial “half portions” of the first stage.

2. Any weight changes on the scales are not going to make any sense: In life, I think we treat scales a lot like calculators, machines that give us logical results and answers to various calculations of input and output made over the week. Unfortunately this is not the case, especially during the re-feeding process of recovery from an eating disorder, and instead of giant body calculators, I would encourage you to treat scales like a very drunk friend following a night out at the pub. This is not to say I advise taking your set of scales to the local takeaway for some cheesy chips and a lamb kebab (scales prefer pizza with a side of garlic bread), rather it is to say you should take everything they say not as fact, more as a vague approximation of reality/what is going on. I am not going into specific numbers here, but when I was admitted to hospital almost three weeks ago (my how time flies when you are in a mental institution!), I ate less than I had been eating at home, due to anxiety and because everything served to me was different and none of it was what I considered one of my safe foods. After a week of eating less than half I had been previously, I stepped on the scales expecting to lose weight. To my horror, I gained. A lot.
“Oh my goodness” I cried out dramatically fainting on the clinic floor. “What is this? My body is broken! Everyone says that when you eat more food you gain and when you eat less you lose weight but I am defying medical science. Someone send me to a laboratory for experimentation!”
When the doctors increased my meal plan, I was even more terrified than I had been before, figuring that if I was already gaining when I wasn’t eating, were I to eat more, my weight would spiral up and out of control. Therefore I continued to restrict in an attempt to lose the weight I had gained…and I gained again.
Soon enough, I had no choice but to start complying a bit and eating a little more, so on the next weigh day, I braced myself for another increase in kilos. You can imagine my surprise then, when I actually lost all the weight I had gained over the previous week despite having eaten double the calories. Logically, that made no sense to me, but, bodies and weights do not make sense during the re-feeding process. As food is reintroduced, chemical reactions explode like fireworks throughout the body, electrolytes get confused, the fluid levels go all over the place so when you get on the scales, any shifts you see are likely to be “false” weights due to all the internal changes going on. Thus, going back to the drunk friend comparison, when they show you a number aka tell you a story summarising the night before, though they will be able to give you a vague idea of what is going on/what your body weighs, they will not provide a logical accurate explanation of your situation/true body weight that you can gain any real knowledge or conclusions from.

3. Your body is going to do some very weird things: When people talk about the re-feeding process they will often whip out phrases like “nourish to flourish”, as if the second you start eating again, sunlight will start shining from your eyes and you will find yourself skipping gaily in a field of daisies. Admittedly, one does need to nourish in order to “flourish” and become physically well, but again this is a gradual process, and at the beginning it is likely your body will do less flourishing and more random weird things that you never expected or understand.
You will probably get tummy aches and indigestion, feel full one minute and ravenous with hunger the next, your bowels may go to sleep or into overdrive, you may fall asleep all the time or even be unable to sleep at all, night sweats and drastic changes in temperature may occur, blood sugar levels will be unpredictably random (recently mine were highest after a day of very little food and then too low after the biggest meal of my admission so far – another reason why medical supervision in re-feeding is vital), and you may experience abdominal bloating as well as this weird thing called Edema. Edema is basically when your body goes through dynamic fluid shifts and parts of your body (mainly your feet and legs) may puff up.
This Edema thing has been especially bad for me this time and my legs and feet swelled up as if someone had thought I was a bouncy castle and plugged me into one of those air machines (during this time I learnt that life is hard when you are a bouncy castle as children are constantly jumping all over you. On the positive side, if you are business savvy you can charge them a few quid a time and make a tidy profit to buy yourself something nice/ice packs to soothe all the bruises made by violently jumping feet all over you).
I think the Edema one had me especially scared because naturally your mind will convince you that rather than water retention your legs are swelling with actual weight and fat, and as someone who is currently managing Edema I can hand on heart promise that is not true. Like I said, I swelled up like a bouncy castle, but after keeping my feet elevated for the past fortnight my legs and feet have started to deflate a little. It feels as if it is a disaster and going to last forever, but it DOESN’T. Me warning you of all these things is not to put you off the re-feeding process, far from it, as it is far more dangerous to remain undernourished with no chance of flourishing in the near future. Instead what I am trying to do here is let you know what might happen so that if it does, you are prepared and know that this kind of thing is totally normal and it is not an excuse for your eating disorder to convince you that it is your body and yours alone being weird and “rejecting food”.

4. Your mind is also going to do some very weird things: You would think that with your body off galavanting and causing mayhem, your mind might perhaps wait to kick up a fuss until after all the physical stuff is over, but no, your mind is going to go a galavanting as well and will also be doing some very weird things. The re-feeding process is very much like the descriptions of puberty I was given in a lesson by my primary school teacher (good Lord was that a terrifying conversation), in that your emotions are going to go all over the place. Like I said, when you are not eating, your mind and body go into standby mode and occasionally emotions shut down. When you start eating again however, the emotions turn back on at weird and unpredictably inappropriate moments. One minute you will be numb and feeling nothing at all, the next you could be laughing hysterically at your shoe, then you will be filled with rage for no particular reason before being overwhelmed with sadness and crying yourself to sleep…It is a lot more fun than it sounds…actually it is not, but again this is not to put you off the process, rather so that you know what to expect!

5. It is different every time: This is probably the most important lesson I am currently learning as I go through the re-feeding process and I imagine it will also be the most important one for people who, like me, have been through it several times before and may be reading this thinking “this is not new information, I know what to expect” much as I may have two weeks ago. I thought that because I knew how my body had reacted to re-feeding before, I would be able to predict how it would be this time round, but that was not the case. Every time you go through re-feeding it will be a different experience and your body will react differently. The longer you have been ill or the more trauma your body has been through, the weirder the experience may be. Like I said, I have really struggled with Edema this time round, and the reason I mentally struggled with it so much is because it has never happened to me before.
I knew all about it and had seen it happen to other people, but when my legs swelled up I was convinced that it was real weight rather than water retention, because my body hadn’t reacted like that on any previous occasion and therefore I thought that kind of problem could never affect me. Had I had Edema before I think I would have coped better with it, as well as the weird things I have noticed this time round on the scales, but it was the fact that “my body doesn’t do this usually” that had me frightened that something was going on and I was actually gaining and swelling with actual weight. Just because your body hasn’t done something before it doesn’t mean it won’t give it a whirl this time and if there is one thing I would want you to take away from this post it is that for all the preparations you make, this is still going to feel very random and very unpredictable…

…What a great final point to end on! Basically I have just told you a list of things to expect during re-feeding and then told you to go into it with no expectations because you cannot predict what will happen…hmm…Great advice…Good one Katie…

To be perfectly honest with you all, I have no idea what is currently going on with my body, what it will do tomorrow and quite frankly I don’t understand a damn word or second of this re-feeding malarky right now.
All I know is that it is scary, it doesn’t feel necessary to me, and I am still doubting the words of every doctor I come into contact with/struggling to accept or trust any of this.
Regardless of any of the mental rationale behind this admission or eating however, this is an honest account of what is and what can happen physically during the re-feeding process as I am trying to get through it, so if you have ever wanted to know what to expect or are going through similar things and are scared, you know that it is not just “your” body being weird and that there is someone else out there with swollen legs covered in the bruises of toddlers who have mistaken you for a bouncy castle.

Take care everyone x

Refeeding

How It Feels To Be Recalled To Hospital Under A Community Treatment Order

If someone had asked me what it feels like to be recalled on a Community Treatment Order (part of the Mental Health Act), before it had ever happened to me, I am not sure what I would have said. Possible guess answers that I might have offered would have probably included things like “scary”, “shocking” or “dramatic”. Probably one of the last answers I would have given, would have been “it feels like having your car stolen by a band of incredibly apologetic thieves who are very sorry for your loss”. However, as it turns out, that is exactly what it feels like…

As you will all know from the fabulous explanation of the Mental Health Act that I posted last year and linked to again last week (hint…it is right here: Demystifying The Mental Health Act…With Penguins), when you have a CTO, you have a list of conditions hovering over your head which must be adhered to if you want to avoid being legally recalled to hospital. Rather than conditions hovering like ominous wasps at a picnic who like a look at your jam sandwiches though, I like to think of them as “things that hold you accountable” or “reasons to do things”.
Every time I was scared to challenge my eating disorder and follow my meal plan I had an argument I could use, that being, “you have to do this because otherwise you will lose weight and go back to hospital”. It was a system that worked but admittedly I felt really trapped by it.
Every day I would wake up and force myself to eat a number of calories that made me feel depressed, knowing that it would keep me at my CTO weight which felt equally depressing.

All I wanted to do was give up, give in and lose weight but I felt I couldn’t because that would only involve being recalled to hospital which was simply not an option. My CTO weight was the border to a war zone and I was not taking a single step into no man’s land.
Then however, the recent hospital surgery medical drama, naturally led me to lose weight and I crossed that barrier without even intending to. Before, that CTO number had held a power over me, every digit had felt significant, like a law from the gods that I would probably find carved into one of those massive rocks at Stonehenge if I visited and looked close enough (a lot of people have theories as to why those mysterious stones are there including “for religious reasons” and “rituals”…My theory is that they were simply put there by some cheeky prankster who wanted to leave a pile of stones lying around so that future generations would ask “why the hell are those stones there?”)

When I went under the weight however, the power of that number and the spell was broken. I had thought that one step over the border would have resulted in guns and tanks sending bullets and bombs flying all over the place…but nothing happened. Of course it would have had the weight loss been “my” fault, but I had an excuse, my appendix did it not me, so it was almost allowed. Obviously the CTO weight still mattered and I had to get back to it, but with this medical “it isn’t my fault” get out of jail free card, I knew that I could take advantage and lose more weight without getting into trouble.

Thus it was that, as you know, I ventured further into no man’s land, and it was a sudden surprise when after all this “oooh this feels quite safe and allowed” turned into the previously expected “guns and tanks and swords and back to hospital for you”. Unsurprisingly, it was pretty distressing and traumatic, so a lot of people have been very sympathetic which has been lovely. I really appreciated comments from people online who were not directly involved in the situation because they felt genuine, but it is when we get to the words of the people closest to me that we get to this whole “I feel like I have had my car stolen”.

To use another analogy, I suppose you could view my body as a car that the garage have been keeping very strict rules on. I may have owned the car but there were restrictions as to what I could do with it, what colour I could paint it and how far I could drive. Then, when the CTO barrier was broken, I suddenly regained control over that car, so I grabbed that wheel, painted it purple and zoomed off into the distance (I suppose if we are combining this with the other analogy I zoomed it off into former no man’s land…just like people did with BMWs in World War Two…I may need to retake GCSE history).
With the car all to myself I set my speed limit, I pumped the tyres to a level that I wanted and I filled every seat with penguins because that is what I wanted to do. I could chose…until I was ambushed by bandits who seized the car and stole it, meaning that it didn’t belong to me anymore. Suddenly they would decide how much petrol went in, how plump the tyres were and how many miles it could run and my opinion was irrelevant (the bandits in this analogy being all the doctors and psychiatrists who recalled me to hospital).
Naturally, having just had my car stolen, I was not best pleased. Thing is, when you ACTUALLY have your car stolen you never tend to see the thieves who are the new owners enjoying a trip around the block in what used to be your very own automobile, and they are unlikely to be very apologetic.

Being in hospital though, I am not only seeing the “thieves” every day, I am living with them, and watching them abuse my car. The doctors and therapists decide what I eat now, when I sit down, where I can go and it is all very hard so I try to talk and work through it with them. I say how scared I am to eat, how scared I am to gain weight, how scared I am of everything and like many people online said last week, they say things like “I am so sorry you are in this position”, “this must be very hard and scary for you” but unlike when people online say it, it makes me angry, and all I can think is “WELL YOU CAN’T BE THAT DAMN SORRY BECAUSE YOU ARE THE ONE DOING ALL THIS. YOU STOLE MY CAR, I AM UPSET ABOUT IT AND CRYING AND NOW YOU ARE SAYING HOW SORRY YOU ARE ABOUT THE SITUATION BUT YOU ARE THE THIEVING, HYPOCRITICAL VAGABOND! VAGABOND I SAY!”

I don’t believe that they can really be sorry because they have what they want, they have the car and are legally allowed to do whatever the hell they want with it. I feel the same way about professionals as I do about close family members like my mum, which I know is terrible and I know I shouldn’t feel that way, yet still as much as I love our visits and I would not be able to get through this place without her, what I get out of them is entertainment, love, company, kindness and knickers (she brings in my clean washing…thanks mum). What I do not want from my mother, is sympathy because in my eyes she is kind of like a thief. Admittedly she did not do the legal act of stealing the car, but she gets something out of it, she now has a say over the car and the thieves will take her views into account. If my mum insists on yellow wheels and the thieves like that idea, those wheels will be the colour of sunshine within 24 hours. She could not have stopped the legal act from taking place but she has more say in it than I think she has used, I am sure if the next of kin kicked up enough of a fuss someone would have to listen, but no fuss has been kicked. On top of that, by me eating and being forced to stay in this hell hole gaining weight, she has benefitted from the thieving.
Again it sounds AWFUL to describe it like that, to compare my mum to someone who is in cahoots with criminals and joyrides around with lemon wheels, when I know she would argue that all she has actually done is not try to stop the people attempting to save the life of her offspring by their actions. She isn’t joyriding (my mum is not a joyful driver…especially if there is a cyclist nearby), she is finally offloading this nightmare she has been living with to professionals who can look after it instead and she can finally sleep rather than stay up into the early hours arguing about sweetcorn. She is benefitting because she gets a break, because as I gain weight she will feel safer and therefore I assume happier yet again, any “I know this is hard and horrible and I am sorry” inspires that same “WELL MAKE THEM GIVE ME THE DAMN CAR BACK AND WHY DID YOU PAINT THE WHEELS YELLOW” rage.

That is why if you were to ask me “how does it feel to have been recalled on your CTO and sectioned back in hospital” I would tell you that it feels like some very apologetic thieves (some of whom are related me), have stolen my car.
Now I am just watching them all make the changes they want, implementing the modifications they have decided, desperate to run out and stop them but with my hands tied. I am just an observer watching people do things to my car, watching things happen to this body that I have had to disconnect from and pretend isn’t mine anymore for my own sanity. I guess a more accurate explanation/analogy then would be to say it is like having your car stolen and then having the thieves force you to be a mechanic carrying out every wish of theirs or risk being whacked on the head by a spanner, but that isn’t how it feels. It feels like things are being done to me, any movements I make are via the puppet strings that they hold, I have no say. When it comes to living with an eating disorder you don’t have much say or control either, but this feels different, this feels more stripped, more naked. This is not my body, it is just a body that I am trapped in, and I am witnessing it be torn to pieces every day. Every meal. Every bite.

CTORecall