Confusing

The Unpredictability Of Life With Mental Health Problems

/ bornwithoutmarbles / 14 Comments

Nobody can predict the future (except for Raven Baxter of classic Disney Channel hit “That’s so Raven”…anyone else miss that show? SOMEONE REMINISCE WITH ME).
Predicting the future is, however, a hell of a lot harder when you are living with mental health problems, aka almighty inconveniences that could pop up and smack you right in the nostril at any time. Of course everyone has the risk of things popping up unexpectedly in life and smacking them in the nostril, regardless as to whether they have mental health problems or not (which is why I always keep mine protected and am currently running interviews to employ my own personal nostril body guard…applications are still open for any hopefuls out there), but I think when you are mentally ill, the chances are increased and you are far more aware of them.
It is like leaving the house and wondering whether or not to take an umbrella. Some people may look out of their windows and see a blue sky with no sign of anything to suggest that an umbrella will be needed in the near future. Maybe a storm will randomly come along out of nowhere and surprise them, but they are not thinking about, nor are they aware of that storm before it has arrived. With mental health problems though, you always know that the chance of rain is there, you can always see the black clouds looming and can’t risk planning a picnic too far in advance or leaving the house unprepared without your wellingtons, just incase.

It isn’t that I particularly want to predict the future, but I cannot stand the swirling uncertainty that being a bit bonkers in the head can cause. Take right now for example. Okay I am in hospital so we have my current location all clear, but other than that I have absolutely no idea as to what on earth is going on.
Being under a section, I can’t exactly decide on discharge dates right now, so I do not know how long it will be before I am home. I don’t even know where I might be in the coming weeks as things are currently not going particularly well and there are talks of me being moved to another unit, one of which could be in Glasgow which is a long way from my hometown of Bristol and is terrifying the life out of me (if you do not live in the UK and do not know how far apart these locations are, all you have to do is get out your Atlas and find a map of the UK. All good? Ok, now put one finger on the very top of the country and the other on the very bottom in the little denty bit. That is how far away they are, aka THE ENTIRE LENGTH OF THIS TEA OBSESSED ISLAND. It is so far that there are airports in both locations so that you can fly between them because nobody has time to sit on a train or in a car for three million hours.) Everything is being done both by me and staff to prevent that from happening, but all in all, it is not my decision and more down to professional people in suits. Then if I were to be transferred to some currently unknown location anywhere across the country, I have no idea when it would be or for how long I would be there.
When it comes to medication I am similarly in the dark as to what will happen because a certain medication I have a problem with and do not want to take, has now been approved by a second opinion doctor, so legally if I refuse to take it orally, I can be injected with it. IN THE REAR. People really should not be stabbing that area with needles. I need it kept bruise free for me to sit on!
I don’t know how long I will have to take it, what will happen with the dose, if it will change, or how I will feel if it does (I am really not a fan of the current side effects).

Then there is my appeal against my section at a tribunal in a few days time, again a place where I can share an opinion but not make a choice. Being in hospital means waiting for a decision to be made and permission to be given on EVERYTHING, even whether or not you can go to the toilet, have a shower, or whether you are allowed to have a cup of tea in your room with your friend, aka things you would generally take for granted. You want to pee? You pee! You want tea with a friend? You tea! In hospital though? We are going to have to “discuss that with the team”. Good lord do they love to discuss things. It isn’t even just short term plans either, because things get even more foggy with a chance of showers and a few tornadoes when looking to the long term, especially when people consider their lives outside of a hospital setting, where things can be even more uncertain.

I love to keep things organised, I love to plan and I have always liked the idea of those huge calendars that big families buy brightly coloured magnets for, to stick to the fridge. In my mind every square and every day is scribbled on in black marker with holidays, social occasions, appointments and of course Great Aunt Enid’s 94th birthday. How can you book a holiday to the Canary Islands though when there is a 50/50 chance as to whether or not you will be well enough to go. Maybe when you book the holiday things are fine, but how can you guarantee they will be the same in a few months time? How can you be certain you will be able to make Little David’s football match on the 12th when depression could strike you down into immovable zombie mode ten minutes before the big game? How can you guarantee your presence at Aunt Enid’s all night rave at 2am? (She may be 94 but nobody can control Aunt Enid. When that woman wants a party, you had better be ready. With glow sticks.)

Obviously the only thing you really can do in these situations is to go ahead and agree to these potential plans and hope for the best, but as ok as that is in theory, it doesn’t take the uncertainty of the future out of the equation, sometimes financially worrying uncertainty if there is a risk that your flights to the Canary Islands and all inclusive hotel resort are going to have to be cancelled.
Aside from long term social activities, there are long term considerations like job courses to consider or places at university. In 2014 I was given a place at a university nearby to study to become a teacher, applications, exams, interviews, all done and ready to go…then I went into hospital. No worries we thought! The children can wait an extra year for my excellent teaching skills. Maybe it will be a good thing, give me more “life experience”, “develop me further as a person”. I asked if I could defer my place to the next year, all was agreed and the plan seemed back in place. I left hospital, I started to prepare for a life in the classroom teaching children all the reasons as to why penguins are awesome (might chuck in some lessons on times tables and ABC’s to keep OFSTED happy…Penguin starts with a P…One penguin plus another penguin equals two penguins…potentially three if dinner and a movie goes well).
Then, unexpectedly and unplanned, I ended up in hospital and my 2015 teacher training once again had to be put on hold. I asked if they would let me defer the place one more time but that request was denied and to be fair that is probably a good thing, because since then my mental health has been even more unstable.

Due to this I haven’t really been able to make any future plans because I never know how well my brain will be functioning, so whilst being unsure of the current plan here in hospital, things are even more uncertain when we look to the future. I often see people making “5 year plans” and “10 year plans” involving things like “get married”, “Become manager”, “own first house” or “give birth to child”. 10 year plans? Good lord I don’t know what is happening in the next ten days! Ten hours! Ten minutes (actually that last one is a lie…I am going to finish this blog, make a cup of tea and then mum is coming to visit. YAY).

Like I said, regardless of whether someone has mental health problems or not, we are all going to get unexpected storms that crop up and throw our neatly colour coded calendars from the fridge and into the recycling. It is however made even more complicated when you can already see the clouds forming, have a brain that is known to explode, and you are constantly aware of that ticking time bomb waiting to go off.

Take care everyone x

FortuneTelling

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The Difficulty Of Knowing What Counts As “A Behaviour” When You Have An Eating Disorder

/ bornwithoutmarbles / 21 Comments

How do you tell the difference between an elephant and a letterbox? You check to see which one has a trunk and which one is filled with neatly addressed handwritten letters that will soon be lost in the abyss that is “the postal service”.
How can you tell the difference between a brand new slipper and a boomerang? You throw it to see which one comes back and smacks you in the face.
So far so good (apart from the fact you may have just been smacked in the face with a boomerang or lost a perfectly good slipper), but now for the third question:
How do you tell the difference between the genuine preferences of someone with an eating disorder and the disordered behaviours of someone with an eating disorder? The answer? With extreme difficulty…if at all.

When you are on an eating disorder unit, the food aspect of things/what you can and cannot do with food, is a lot more regimented and controlled by sets of rules than it is in normal life.
Rules will vary depending on what hospital ward or inpatient unit you have been admitted to, but as a general list of examples these rules will be things like “no eating cereal with tea spoons”, “no breaking food up into tiny pieces”, “no sleeves at the dinner table”, “you must scrape the plate that you are eating from clean to complete the meal”, “only X number of minutes to eat your meal” and “no inserting parsnips into the nostrils of the person sitting next to you” (pretty sure that last one is also relevant in real life actually but I am not quite sure…my mother was never very clear when it came to table manners.)
These rules are often frustrating and can seem a bit harsh but they exist because often an eating disorder controls how a person eats and behaves around food, as well as how much or little of it they eat, so part of treatment during recovery involves tackling those food behaviours as well as things like the amount of food someone might be eating. Like I said it can be annoying, but it makes sense. Take the “you must scrape your plate to complete a meal” thing. It may seem over the top (and is a rule that will destroy the lovely willow pattern adorning all of your best crockery), but were it not for rules like that in hospital, there is the risk of people arguing that they have finished their meal when really all they have done is smear it across the good china.

With behaviours like that, I think it is easy to tell the difference between them and genuine food preferences as I don’t think I know any people without eating disorders who “prefer” trying to mash a lasagne into oblivion rather than consuming it.
There are however, a lot of actions people do where it is far harder to tell if the person is making a genuine choice or following a behaviour, and in these situations it is less like trying to distinguish an elephant from a letter box, and more like trying to tell the difference between an elephant, a tea pot and a vacuum cleaner (if you line all three up together you have to admit they do look rather similar…trunks, nozzles and spouts are easily confused…I learnt that the hard way…and broke a teapot).

For example at the hospital I am in at the moment, there are certain rules regarding condiments such as “only two pepper/ketchup/vinegar/mayonnaise/brown sauce etc sachets per meal”. The logic behind this is that some people with eating disorders tend to totally cover their food with a certain condiment in order to make it all taste the same/spoil the food and make it taste horrible as a punishment etc.
Then again, as well as people who use pepper to burn the roof of their mouths off by using it excessively, there are people who use what looks like an excessive amount of pepper simply because they like it. Every time my Dad eats a meal he uses so much pepper that even people scuba diving at the bottom of the Atlantic start sneezing because he likes the spice, and I have a friend who uses what may look like a lot of salt because she has been brought up using that amount and things taste wrong without it. Neither of these people have eating disorders, but they would still struggle living by the rules that are in place to help someone in recovery from a disorder. I guess you could say that the way you tell the difference is to see which came first, the food preference or the disorder, but that isn’t as easy as it sounds. Eating disorders are sneaky, they slip into your life gradually without you really noticing, so it is rare for someone to be able to pin point the day they officially became unwell.

What if my Dad, who currently does not have an eating disorder, developed one in years to come and had to go into hospital? Or my friend who likes a lot of salt? They might, quite rightly, argue that their preferences existed years before their illnesses began and they may be right but the thing is, in hospital, that doesn’t really matter and this is where it gets frustrating. Once you are tarnished with the Eating Disorder brush, suddenly people assume that EVERYTHING you do around food is because of that disorder and they rarely give in or believe you even when you are expressing a genuine dislike. It can be really annoying when you know that your love of toast that is not particularly well cooked is because you like soft as opposed to crisp bread, yet when you are consistently told that everything you do is disordered, sometimes you can start to doubt and be unable to tell the difference between your own choices yourself (aka the is it an elephant, teapot or a vacuum cleaner situation).

How about timings and things like time limits on eating disorder wards? Admittedly they are necessary to avoid still working on Monday’s bowl of cereal at Sunday dinner time (rather soggy cereal I would imagine), but in addition to timings perhaps being affected by disordered thoughts or behaviours, people naturally have varying eating speeds. I certainly know that in my household my Dad will always finish his dinner a good 10-15 minutes before my mum for the simple reason that he has a bigger mouth and more violent set of gnashers (not abnormally large I might add…like he is still a handsome chap and isn’t frequently being mistaken for a shark who needs to be sent back to the aquarium…just clarifying…love you Dad.)

The main rule/“behaviour” that got me thinking about this topic however, the rule I have seen come up in every single one of my admissions to an eating disorder unit and the rule that is carved in a stone tablet and worshipped on a mountain guarded by holy cherubim:

“Thou shalt not dunk biscuits”.

Some of you reading this, who have never heard of such a rule, may be a little shocked, stunned and perhaps distressed to hear that there are people all over the country being forced to eat rich teas that have never actually taken a dip in a real mug of the beverage after which they are named (I know, it is upsetting but we can get through it).
Again, as with all hospital rules there is a reason behind it, that being that people sometimes submerge and drown their biscuits rather than dabbling in a quick dunk and then smear the soggy remains around the inside of their mugs or leave them in sorrowful abandoned mush mountains at the very bottom.

The issue though, comes when you are someone who wants to safely and appropriately dunk their biscuit, yet are prevented by the rule that may not be relevant to you. Of course rules have to apply to everyone on the ward to make them fair, but that is what is annoying, i.e. having an eating disorder and then having EVERYTHING you do with food put down to your disorder when maybe you have just grown up liking a lot of ketchup on your curly fries, or genuinely prefer the texture of a cookie that has had a quick swim in a mug of hot chocolate. Dunking biscuits CAN be a disordered behaviour, but it isn’t always.

Just imagine if the world had to live by eating disorder ward rules with the act of dunking a biscuit being classed as a disordered/unhealthy behaviour and thus banned for all. How would any of us ever eat an Oreo? The dunking aspect to those delights is even in the damn advert! They literally explain how to eat them on the packet! First you twist it, then you lick it, then YOU DUNK IT. If that bit was deleted from the process the country would grind to a halt and living rooms across the world would be filled with poor distressed people holding opened licked Oreos and crying out in agony “WHERE DO I GO FROM HERE?” Think of the number of teeth that would be broken on undunked ginger nuts!

You could maybe be a generous dictator and say that only people who appropriately dunk their biscuits are permitted to do so (something I have asked for on multiple previous admissions), but how can you tell if someone is dunking appropriately? What if someone is genuinely dunking for the resulting soggy biscuit end goal but is such a poor judge of the strength of their chosen biscuit that they get the timings wrong and remove their Custard cream or Bourbon from their brew not to find a perfectly melted vanilla or chocolate cream centre but instead a blank space, an empty half in which biscuit perfection had existed seconds before it was too late and the perfection turned into a sinking disappointment of heartbreak, sorrow and missed opportunities.
Should biscuit dunking be classed as an eating disorder behaviour just because it can sometimes be used as one or can it just be a preference?

Overall then it is clearly very difficult to tell the difference between an eating disorder behaviour and a genuine food preference, especially when you yourself have the eating disorder. I guess when it comes to people who have no issues with food the answer is obvious…until that person is unfortunate enough to develop the disorder and we are caught in the whole confusing “which came first the soggy biscuit or the mental health problem?” dilemma which has plagued scientists for years (scientists who I feel are doing valuable work but are also perhaps taking advantage of their right to order in free biscuits from the big companies under the guise of “research purposes”….)
Of course there will always be ways to figure out the disordered act from the genuine preference but it isn’t always as clear cut as the elephant and the letter box example and sometimes even knowing your own reasons for doing things can get you into a confused muddle of soggy biscuit yourself.

Take care everyone x

ElephantHoover

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

/ bornwithoutmarbles / 11 Comments

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