Category Archives: Uncategorized

Ch-ch-ch-changes.


On Tuesday, everything changes again as I leave the EDU and go home, hopefully for good. 

I’m inhabiting a weird no-man’s land at the moment, with one foot in the EDU (and a lot of control still held there), and the other out and about with all the responsibility for food that entails. (I am aware that sentence makes it sound as though only one of my legs goes out, but you get my point.) 

They call it graduated discharge. I call it a special type of hell that involves pushing boundaries way beyond your comfort zone and relearning independence – but a new independence that has to built up from scratch. It’s not just a case of going home and doing the same old things; it requires demolishing all your old ways of living, and starting again. A form of rebirth. 

I don’t belong in either world anymore. I still question whether I belong in the world, full stop. 

When I’m away from the unit I miss out on groups and the nuances of community life. I miss the cloistered nature of existence, where I simply have to fill my time and manage my thoughts in between mealtimes. 

When I’m at home I feel like an alien staying in a place I like – but don’t belong. I imagine it’s a bit like staying in a good airbnb. But all ties I felt to home have been severed and I don’t know yet if I can form new ones. It doesn’t feel safe at home for a variety of reasons, but I have to deal with that. 

I have to deal with a whole new life. 

Yes, there’ll be people to talk to. Advice available. Strategies offered, and that old favourite of ‘giving it time’. 

But really it’ll be me, alone, with food and the tricky bits of living. Can’t say I’m looking forward to it. But then, I’m not known for my optimism. 

Advertisements

Ward life: part three.


Now Damon Albarn and the rest of the group are walking around, singing their little hearts out, and it’s making me think about therapeutic groups here. And the fact that they can degenerate into a blur. 
See what I did there? 

What you need to understand about groups here is that they are designed to fill time. It’s not a therapeutic programme as such. This EDU is a place designed for re-feeding people who can’t think straight due to malnutrition. It’s not really the right time for psychological input but, at the same time, you don’t want to leave people high and dry while they go through massive stress and change. 

I believe there’s a role for some therapy during the re-feeding process – to explain what’s going on in your head and to give a taste of what’s available when you get to the point of being able to engage in therapy. 

Instead, we have a round of discussion-based groups and activities to break up the eating and sitting. I don’t find them massively helpful, but I am a picky bugger and I am used to ‘proper’ one-to-one therapy.

Anyway, here’s a taste of our week…

Monday kicks off with community meeting, where we air grievances and talk through housekeeping details like the fact the showers are not working properly AGAIN. It’s pretty pointless, because nothing ever changes. And it can get heated because the powers that be thought it was a smart idea to do it shortly after we’ve all been weighed and are as tense as hell.

Then, in the afternoon, we have a discussion group with the food psych (MY food psych). It’s our only contact with him all week apart from ward round on a Tuesday. I think it’s an opportunity for him to take the temperature of the ward, to feed (ha ha) into his ward round deliberations. He says it’s a chance for us to discuss issues that have cropped up for people during the week. We have a tin that we can put anonymous questions and issues into. I like this group. It’s thought provoking and has often revolved around issues I want to talk through, because I like to use this resource and come up with questions. 

Tuesday is ward round day – and I mean day. It takes from 10am to often gone 6pm for the food psych and a member of the senior nursing team to review each patient. We have creative group in the morning, where you can do anything you fancy, just all together in the art room. I usually write or fold cranes. 

Later, at four, we have menu group, where we all fill in our menu choices for two weeks ahead. I find this easy and just tick options, and hand it in. Others agonise over choices for EVER. Even though, over the week, the calorie content of the menu works out the same. 

Wednesday is dreaded therapeutic writing group all morning (with a break for snack). I think you all know my opinions on that by now, so we’ll move on to goal setting, later at four. Here, we fill in a sheet that looks at what’s gone well and not so well over the week, and we set ourselves goals for the next week. We share what we’ve written, and give each other feedback. I find this accountability helpful, and always look back at the previous week’s sheet to see what’s changed and how I’ve done in achieving my goals. 

Thursday is a bit of Russian roulette: sometimes there’s nutrition group, sometimes there isn’t. At the moment we’re between dieticians, so the head of dietetics for the Trust is covering and, when he can’t make it, the OT is supposed to cover – but she’s as flakey as dandruff, so we never know. Nutrition group can be thought provoking and I generally find it useful – as long as it’s not derailed into lengthy and circular discussions about what’s on the snack list. 

In the afternoon we have a group with the other consultant here at the EDU. She mainly looks after the community side of the programme but, once a week she comes to talk to us. The group is about connections, and involves us preparing things in advance to share, and then the consultant and a psychologist turn their chairs towards each other and ‘reflect’ out loud on what they’ve heard. It’s weird and freaky to hear yourself discussed in the third person WHEN YOU’RE SITTING IN THE ROOM. But it can be interesting, and it’s not one I try and duck out of. 

Friday kicks off with emotional regulation group, when various psychologists take it in turns to run a small block of sessions. So it’s variable. I’m really interested in finding out and discussing strategies for during and after crisis; less than wild about smelling things and exploring ways to use senses to ground yourself. 

Friday afternoon and all weekend are free from groups. Although over the weekend we often have access to the art room to do things like tie dye and papier-mâché, which help to pass the time if you’re not going out or having visitors. 

In between all these groups there’s obviously all the structured eating, as well as one-to-one key work sessions with your key worker team, where you work on individual issues. Plus there are all the “can we have a brief chat?” conversations that can come out of the blue. Normally when you’ve just got into something else. And you can always seek out a member of staff to talk to – if you can find one you feel able to confide in. 

So, who’s up for a group to discuss how we feel about groups? 


Ward life: part two.


Now I’m imagining Damon Albarn strolling down the corridor singing “ward life”. I need to get a grip on this. 

Maybe corridor thoughts lead onto the place you have the most control over – your room. 


How quickly you settle in depends on how fast you accept the likely length of your stay. If you’re kicking and screaming all the way, you might reject bringing in anything that will make it feel home-like. You’ll stick to the thin blue hospital blankets and scratchy sheets and towels provided. You’ll rebel against even putting anything on your white board, because you’re not staying…

The more realistic realise they’lll be there a while. The average stay now is eight weeks, and that’s a long time to feel like you’re inhabiting a cross between a prison cell and eighties’ student accommodation. 

I see my room as my sanctuary. I can close the door and – visual checks through the window aside – I can be alone in a space I’ve made as relaxing as possible. 

I bring my own bedding – pillows, duvet, linen – the lot. I bring a cushion to use in the obs room. A blanket to cover the hospital plastic chair. I fill the room with flowers, to take away the hospital smell, and I find a way to personalise the walls. Fairy lights everywhere fulfil the duel purpose of not having to sleep in the dark and avoiding the torch in the eyes during night checks. Plus, who doesn’t love fairy lights? This time I chose to fill the room with cranes, too – partly as a distraction for my hands, and partly because no one else had done it. (It’s now the current craze and it’s driving me bonkers.)


Sometimes, you have to share your room at all times, if you’re on one-to-one obs. I came to the ward from an acute psychiatric one and I was clearly an unknown quantity. I couldn’t provide any assurances about managing my own safety and one of the first things I did was try to discharge myself (they’d lifted my section on transfer between hospitals). I wasn’t rational. I was permanently on the look out for ways to harm myself. And this got me a shiny new section and one-to-one supervision. Never being alone was hard – as was having a series of unknown black men snore in the corner of my room, keeping me awake. 

I did my best to get off one-to-one as fast as possible. I wanted my small piece of space back to myself. I needed my sanctuary. I needed control over some small part of my chaotic life. 

Your room is where you receive visitors, too. You want it to look good, because it’s a reflection (illusionary) of how well you’re doing. It normalises the weirdness for people of visiting you on a locked ward. I mean, you must be okay if you’ve got flowers and a well-made bed, right? 

Your room gives you room for change. 


Ward life: part one.


Now I’m humming Blur’s Parklife. Anyway, It’s occurred to me that 13 weeks after admission I haven’t really shared any details about day-to-day life in an eating disorders unit. To me, now, it’s become the norm, but to people outside this bizarre world it’s a strange and unknown tiny universe. 
So how does it all work? 

To start with, you have to understand that an eating disorder is a manifestation of control. Control over something that you can dictate, as a stand in for all the elements of life you can’t. (Yes, it can be much more complex than that, but I’d put a need for control somewhere in the mix for everyone.) 

So, it stands to reason that an eating disorders unit is all about taking away that control over food and eating. It basically takes away responsibility, and then gradually gives it back to you again as you learn new habits and are ready to control the need to control. 

So we live according to a rigid timetable of eating and snacks, activities and drugs. Resting and therapeutic conversations. You name it: there’s a rule about it. 

You get used to the system. You get used to asking for the most basic of things (“Can I stand up to fetch so-and-so?”). You learn how to live within the confines of this relatively small, ten-bed ward, cheek by jowl with other people with food difficulties. And you just have to hope you won’t go completely batty in the process. 

Let’s start with eating. When you arrive, you generally spend your first week on half portions. Because I hadn’t eaten solid food for so long (errrrrmm, all of 2017), I came in on what was my regular diet of fortisips and milky drinks, and had one-to-one meal times to build up to eating regular food again. 

The day here is ruled by the eating timetable. Breakfast: 8.30am. Snack: 11am. Lunch: 1pm. Snack: 3.30pm. Dinner: 6pm. Snack: 8..30pm. And after every main meal we are supervised in sitting down in the obs/TV room for an hour; half an hour after each snack. That’s four and a half hours of sitting down a day, in a small room packed with emotion, conforming to rules about how you sit. 


Here’s a taste of the rigidity. 

Preparation for breakfast starts at 8.15am. You weigh out your chosen cereal, making sure the staff member has seen the scales are at zero. You choose a jug and make sure staff have seen it’s clean and dry (I hold mine upside down over my head to make a point), so nothing can dilute the milk. You measure your milk out and get it checked. You pour a glass of fruit juice up to the approved level. If you’re on a larger meal plan, there are more rules about toast and spreads; it goes on and on. We start at 8.30am regardless of whether everyone’s ready or not, and when you’ve finished, you show a staff member your empty bowl and glass and your finishing time is written down. Your obs hour starts from then. 


Here’s my place at the table. I’ve tried to find things to anchor me to a reason to eat: photos of family and happier times, mint to act as a grounding scent, Play-doh and a tangle toy to fiddle with to stop me scratching my skin off when I feel as if I’m crawling with calories. And the day’s tongue-in-cheek motivator card (self help without the self helpiness). No, I never thought I’d be a decorated place setting person either. All I can say in my defence is that I am so desperate I will try anything.

The atmosphere in the dying room is always charged with tension. When you’re finished, but the 35 mins allowed for breakfast isn’t over, you have to sit with the horror of what you’ve done. Or, in my case, smell fresh mint, fiddle with a tangle toy and fold paper cranes – trying to let the waves of horror and guilt wash over me.

If you hesitate in your eating or become visibly distressed, then a staff member will come over to ask you what’s wrong (the whole world is caving in over a spoonful of Bran Flakes, for example), and will quietly offer reassurance, encouragement and tissues. Apart from mopping up tears, you’re not allowed tissues or paper towels at the table to prevent eating disorder behaviours. So it’s just tough if you’ve got sticky fingers. 

If, when the meal time has finished – but you haven’t – everyone else leaves the room and a member staff will encourage you to have fortisips to replace the nutrition you’ve missed out on. Often this means having more calories than you would have had if you’d finished the meal. And this can feel punishing. 

We do this time after time, day after day, week after week, month after month. 

You gradually conquer one fear, and it might be replaced by a new one. Or you might move on to the next in the long line of issues and barriers you’ve built up around food. There’s always something. It’s never ‘okay’. 

Monday is the worst day of the week, because it starts with weighing: it’s our own version of Sunday night fear, dreading what the scales will say. The expectation is a weight gain of one kilogram a week, which creates a Catch 22 situation: if you’ve gained a kilo or more you have to sit with all the feelings that brings, but if you’ve gained less than a kilo you’re facing a meal plan increase in the Tuesday ward round.  

Weighing starts around 7.30am in pyjamas, and you have to have been to the toilet. The kitchen is locked at midnight – but that wouldn’t deter anyone seriously determined to water load. We gather, silent and anxious, in the obs room and wait as the agonisingly slow moments pass until a staff member sticks their head round the door and calls the first person through. The numbers on the scale set the tone for the day and follow you like a cloud, obscuring all thought and conversation. 

There are tears. Shouting. Painful silence. Other forms of comfort and control – some harmful, but necessary. Or so it seems at the time. Monday breakfast is incredibly hard and struggles with eating are definitely more intense all day. 

Mondays, bloody Mondays. 

Just think what’s to come in the rest of the week…


Homeless. 


We’re all alone, no matter where we are. In a bustling street or as the only person in the largest of rooms. We are alone. 

Alone and loneliness don’t necessarily go hand in hand. I’ve always found that sometimes home is a sanctuary where I relish being alone. I can take off the mask; stop spinning; be still. And, sometimes, home is one of the loneliest places I know. 

But whichever way the coin spins, home always feels like home. I feel I belong. I feel (relatively) safe. 

I’ve been home on leave from the unit a couple of times now, and home doesn’t feel like home. It’s as though I’m visiting somewhere I used to live a long, long time ago. It’s familiar, but in a distant and unconnected way. I don’t belong there anymore. That Friday was my farewell to living there and, it seems, there’s no going back. 

And yet I don’t belong here, either. This was only ever a temporary place of safety – a place to re-evaluate and regain my balance on the tightrope we all live on. 

I am officially on graduated discharge now (horrible term: makes me shudder. ‘Discharge’… ewww). This means I am heavily encouraged to submit a timetable of leave each week, spending increasing amounts of time at home. I’m on week one of three. I’m supposed to go home for good on Tuesday 10 October. 

But I don’t have a home. 

I have a bricks and mortar structure to put all my things in, a place to sleep and sit by a fire of an evening. It has all mod cons (some of which could do with being updated). But it’s not my home. 

With my new and shiny communication skills I’ve talked about this with several professionals and the answers are making me want to grind my teeth with frustration. “It’s natural”, they say. “Lots of people feel like this”, they say. “Just give it time”, they say. 

I don’t feel safe in this ghost house. The cats ignoring me doesn’t help. I don’t remember how it should smell. I’m disconnected from all memories – good and bad. And, on top of all this, home has become a place where I eat. And not just on a one-off basis, but monotonously and regularly. I have to do the thing that makes me feel most unsafe in a place that feels unwelcoming and alien. 

This is really going to be fun. 

So far, I’ve had to pay a price in pain for the ability to eat what I should at home. This isn’t a great way of coping and is bringing its own difficulties. 

Tomorrow is my first night at home. I’ve tried to make some changes to reclaim a bit of ownership back. A new mattress topper. New pillows. New bedding ( that hasn’t arrived yet). I’m planning on painting my minuscule hallway on Saturday as distraction, in two cheerful shades of grey. I’ll be able to make a decent gin. And there’s always diazepam.

I don’t want to go. 

I have to go. 

And, I guess, we’ll just have to see what happens. 

I really sodding hate change. 


Animal instincts.

Every week we take part in a therapeutic writing group – which is a bit like a year five writing exercise. And then we all share what we’ve written and comment on each other’s work. 

I stopped following the prompts weeks ago and just used the time to write my own stuff and, for a while was asked not to share what I wrote, but to take it to a one-to-one session instead, because it was all getting a bit dark and twisty. 

Anyway, this week a friend of mine challenged me to follow the prompts and to do a deadpan, to the letter, version. 

I failed miserably. In fact I started a general revolt that meant we skipped the ‘warm up’ part of the exercise altogether. 
So I thought I’d share the pain of therapeutic writing group with you. Here’s the task that we – a group of adults – were set:


And here’s what I came up with. I’m proud that there are at least a few animal-related mentions…

………………………………………………………………………..

It starts as a kernel of a canker that burrows deep into your unconscious. And there it grows, drawing strength from circumstances. 

Small and dark, and yet vast as the cosmos, with the power of a thousand armies. It’s a leech that infiltrates your brain; changing your chemistry; changing the routing of your synapses. Changing you. 

It can sleep for years before rousing, flexing its muscles and then go dormant again. Or it can rampage around your head constantly to dominate your attention. It doesn’t like being alone.  

As it grows, it becomes harder and harder to manage and, through desperation, you might try turning to experts who will suggest training strategies. But, like a puppy left to run wild for too long, it never comes to heel. 

It delights in the unexpected. In spreading its talons across your senses when you are unprepared and are at your most vulnerable. It traps you under layers of apathy, repulsion and self hatred. It binds your mind so tightly with despair that you cannot think. 

But at the same time, it thrives on secrecy. It’s a sleeping enemy that wants to live in the shadows, so it often allows enough masking and functionality to hide its existence. 

When it’s ready, it wants to eat you from the inside and then leave a crumpled husk in a heap at the foot of a long drop.

This thing cannot be tamed. And perhaps it shouldn’t be named. 

You have to learn to die on the inside and live on the outside. You have to hold on as long as you can, until it’s time to let go. 

Fall gracefully when your time comes, and hope you’ll be remembered for your deeds of atonement. 

………………………………………………………………………..

Lots of other people wrote about dead pets and I cried a lot. But when I read mine there were just dust balls of silence. 

I’m going back to keeping things to myself. 


Willo the Wisp.


The heat of the day had died away and I was taking my thirty minutes of accompanied leave with a human member of staff. It was a chance to escape the ward and the fences and sit on a bench like a normal person, taking the air, and only talking when I wanted to. 

My chosen bench faced a willow tree I’ve seen transform over the years. From full mature growth, then pruned back to ugly stumps, before watching then regrow into vigorous fronds of above-ground seaweed. 

Sitting on the bench, we were competing in making up ridiculous metaphors about how the tree could symbolise life, mental health and mental health in life. It was fun. Relaxing. 

But thirty minutes of freedom a day passes pretty quickly and soon it was time to plod back, reluctantly, to the ward. 

Just before we turned off the road to take the path to the unit I stopped, as though I’d stepped in glue. I couldn’t go back to the small rooms filled to bursting with negative emotions and pain the size of a galaxy. I couldn’t. I wouldn’t. 

But even in my stubborn upset, I knew that my burly male companion would make sure I went back. And I knew that running wasn’t an option (partly due to an elbow version of a Vulcan death grip). And I knew that running wouldn’t solve anything anyway. 

Holy shit, Batman. Maybe I have learnt something. 

Instead of legging it, I did quiet sobbing and my escort did light, comforting chat while we slowly walked the last few steps to the door. 

It was all a bit tense, so he made a joke: something about it being easy to waft a willow the wisp in through the door, even if they didn’t want to go. It was a reference to the willow tree and it was a throwaway remark. It meant nothing. 

But my head exploded with memory and feelings from over 37 years ago. I felt as I’d felt. I saw what had been. I was back there in the thick of it. 

In case you don’t know your early eighties children’s TV, Willo the Wisp was a cartoon about life in a forest full of sprite-like creatures and a baddie TV set on legs called Evil Edna. Anyway, this blog’s not about the plot – it’s about the theme tune. 

It was my magic tune. I believed the hummed melody would keep me safe from the perils of the dark, going up to an ill-lit landing or when I woke terrified in the small hours. 

It was my protection against fear and things that go bump in the night. But on the building’s doorstep, I remembered how I’d learnt that my magic tune didn’t have the powers of protection I’d needed. That nothing I’d tried had protected me. I could hum my heart out, but it couldn’t stop the bad things that broke me at the age of six. Broke me in ways that can never be fixed. 

Through the emotion, I remember not being able to stand up. I remember vast, shuddering (extremely snotty) sobbing that seemed to come from my stomach. I remember lying on the floor, repeating that the magic hadn’t worked. I couldn’t see the present; only the past. 

Hello memories, it’s been a long time. 

I thought I’d buried you so deeply you’d suffocate under the weight of everything that came after. But here you are again. Getting stronger. Elbowing your way out. Shouting for attention. 

Well that little girl didn’t deserve you. And I don’t deserve your shit now. So, when I’ve lulled the urge to die back to sleep, I’m going to tackle you and kick your arse. Because enough is enough. 

You’ve been warned.