Blue Hair Day

There are times when I reach the frayed ends of my endurance and I really need to get out of this place but have to be content with a mental, rather than physical escape. I divide my time into sections between meals into which I feign productivity; the chapter of a book, a row of crochet, a crossword puzzle. It sounds like a perpetual all inclusive holiday but believe me, it is nothing of the sort.

I write this blog partly for myself, and also to offer some insight or solace to others who may be suffering in a similar way. It acts as a salve, and though it is not intended as such, I fear it also acts a means to keep some of those who know me updated without the need for real human contact. My words feel somehow reduced in power because of this one-way communication, but I have decided that this is not a reason to desist.

I want to write about an incident that occurred last week, again, not by way of an update but simply to verbalise something that remains a painful truth. I became involved, and indeed was the perpetrator, of what on the face of it should have been some harmless fun. A prior patient had left behind a pampering kit containing hair chalks, sparkly nail varnish in garish colours, and glitter tattoos. With some enthusiasm, I offered to ‘tattoo’ the arms of fellow patients and in return, was offered a hair make-over, which resulted in horrifying bright blue streaks. I went to view my locks in a mirror and the result was electrifying. Staring back at me was a woman who should have known better, a professional and a mother who should either be working or at the least looking after the home and the family. Sitting crossed legged on the floor in a hospital lounge having my hair tinted blue represented the worst part of me; the part that has failed and I hated myself for it. The flash of self hatred was both sudden and terrifying, and unfortunately had an effect on my ability to deal with the food situation, my go-to comfort of deliberate restriction and hunger could not be satisfied, and I despised myself all the more for needing this crutch.

Thanks to the staff here and to my therapist I have learned to be more reflective over the past months, dealing with stuff that I have never before faced up to and unravelled. Things that have affected me deeply around which I have built up brick walls and masked behind a capable and competent woman who knows her own mind. There is a child inside all of us but mine is frightened and abused and she does not like what is happening. I have learnt that the past cannot be left behind, what is happening now is sadly partly a reflection of my childhood and teenage years. I cower from abuse, I run from indifference. Only now do I realised that the constant anger, the fractured family, the being hit and shouted at was not the fault of that child. I grew up genuinely thinking I was a miscreant. I now face the uphill task of learning to be kind to myself and cannot continue to be so self-berating. It is clear that this is not sustainable.

Yesterday, I had a day and night out of the unit, the first night I have had at home in my own bed for almost a month. I found that at home I instantly fell back into the same old habits, being the person who must achieve, even if the tasks were as inane as dusting, weeding or ironing. I simply could not help but slip back into self-punishing ways in order to justify any fun I might have, as if I need to balance good times by enduring hard work and the restriction of food order to deserve it.

The first step is understanding and acceptance. The rest, I hope, will follow.

Homesick

Just what it says. There’s nothing I can do except ride it out. It comes in waves and is all engulfing. I am missing my family, my home and the familiar surroundings, my animals and my freedom. A bubble bath, a hug on the sofa watching rubbish TV. I have to be the best version of myself here, to be always in control and it’s exhausting. Saying goodbye after visits is awful and despite being surrounded by people and checked up on every 15 minutes, I feel desperately lonely. Friday night in hospital is not the best fun. Most people have gone home for the weekend and I’m sitting in the lounge waiting for medication so I can then just go to bed, attain a bit of oblivion and dream of home.

Being Friday evening and August the usual staff are thin on the ground and the ward is being run by agency workers who have no idea what’s going on. I had to talk through each dose of medication with the nurse who simply didn’t seem to know anything. It took 35 minutes. I wonder at such times why I am here at all.

Seen better views……

A Life in a Day

I awake each morning in a confused state, not knowing where I am. In the first moments my dreams flitter between the unconscious and conscious and then have gone, out of reach, I am only certain that I never dream about being here. I reach behind my head and pull the curtains. The light does not flood but rather seeps into the room; that northern European muted pale summer grey. It is both comforting and subduing.

The knowledge and pain of reality are still present but apart from me, though I can see it waiting, slung over a chair like my clothes, to be adorned, ready to face the day. At the moment my thoughts are gossamer thin, I can feel everything and nothing. My body rises from the bed and I can shower and dress but only as I slowly become more alert, will the knowledge become real and tangible.

The shower is indisputable. There Is no cold or hot water here. Nor are there any controls. The sensor knows more than I do when I am there and when I am not. I am enveloped in warm water that requires no thought or feeling. It simply is. The shower of mindlessness. I am tempted to stand under the water for hours, but by its very conformity to time, the shower too is rule bound, and I must leave.

What to wear? It matters too much yet matters not. The temperature is the same inside and out, clothes are simply my protective shell and form an appropriate response to social norms; my age, the weather, the current trend. Sometimes I get it wrong, but mostly not.

I fear the chemistry of medication. I would rather leave my body to its natural rhythms; to feel pain, rather than to mask it, but this is not an option. The extent to which I have resisted has been slowly broken down. Twice a day I stand obediently at the stable door of the dispensary, ready to be sedated and normalised. I would prefer to accept unquestionably the huge variety of coloured tablets which have been prescribed but I have to become focussed; I have noted that in their haste, the staff are not always correct. I have become an unwilling expert. My job in real life does not allow for error. I feel the tingle of frustration, but I smile and smile and conform.

Breakfast is by far the easiest meal of the day, I have the energy to battle the voice that resists. Yet even so, I have to score a victory. I pour less than the prescribed milk and cereal into my bowl, yet I eat the additional banana. I fear loss of control, the one balances the other. My fellow diners this morning are polite yet reserved, conversation is limited to the necessary. I find enough room in my head for the milk and cereal, the toast and peanut butter, the fruit juice and family-sized banana. I feel sated and bloated. How can I consume these extra calories when I am not allowed to even stand let alone move for a whole 9 hours in each day?

After each meal is a rest period of two hours when no type of exercise is permitted, including standing up. This is policed carefully by the ever watchful staff. Again, the tingle of frustration, sharper and more focussed this time. The toilets are in lock-down until the end of rest period. Forgetting to use them before a meal results in either having to hold on to the discomfort or suffer the consequence of being scrutinised. Dignity dictates that It’s usually better to adopt the former.

There is no option for solitude. I am checked up on every 15 minutes, including all through the night when a torch is shone onto my face. I am not sure why this is unless it is simply to check I am still alive. Between rest periods, I am allowed two 10 minute walks out, but am shackled by the presence of a chaperone. I long to have space alone in the open air. I dream of walking, steadily, one foot in front of the other, unbound by time, until I reach the top of a mountain and can gain the perspective I am craving. Instead I walk around the hospital grounds and make conversation with a nurse. I am lucky that small talk comes easily, it’s part of my armoury, but I would still rather have my own company, just for a few precious minutes, even just to enjoy the stunning view of Oxford from the nearby park.

Back again, a call to arms comes all too quickly; yet another visit to the dining room, this time for a snack. The routine is monotonous yet soothing. Every meal is a battle. The rigidity of the rules of combat are clear and so there is no cause for misunderstanding. The only problem is that I do not know whose side I am supposed to be on.

Hotel a la Manger 

It’s taken me 5 whole days to muster up enough courage to write this but I have unexpectedly ‘stepped up’ to inpatient admission as of last Friday. I would prefer to skirt around the reasons why but consequently I am currently having a fun-filled stay in Cotswold House Hotel. I could really go to town on trip advisor, given the lack of bedside lamp, soggy towels, un-openable windows and poor choice of food. At least I haven’t seen any cockroaches (yet). The bathroom facilities are fine but if you need to use them during rest periods it means someone standing outside listening. It’s altogether best to hold on, believe me…

This holiday has also resulted in a significant reduction in activity which I suppose is a good thing but means in consequence a loss of freedom as I can’t go out unaccompanied (or sometimes at all mainly due to staff shortages) or spend time in the garden unless they forget as they did on Sunday. ( I have discovered that there is a fairly easy escape route from the garden over a fence). I am also facing really difficult questions from other patients, who obviously want to know all the ins and outs of everything. This place is a hotbed for gossip as generally there is nothing else to do. Think of Butlins/Hospital/Concentration camp and you won’t be far wrong.

Overall is an almost overwhelming guilt that the timing coincides with the start of the summer holidays; what sort of a terrible mother  would absent themselves at such a time?

I don’t want to turn this into a rant as I know that the staff are all working under a lot of stress, but the inconsistencies in treatment are pretty frustrating. One minute I’m left alone for hours, and the next I am checked up on every 15 minutes. All electrical items have to be PAT tested which can take up to 3 weeks meaning I’m having to leap out of bed at just the right moment of sleepiness to turn off the overhead light, have no phone charger (though I have sneaked one in shhhh) and can’t dry my hair, which is now shaggy style.

Trying to find the positives; I have in fact made a lot of progress weight-wise since last week, which is scary but I feel that the little voice telling me not to eat is receding a bit and so I am hanging on in there working hard on getting better though sometimes I just feel like crying, and others like banging my fists against a door until I can escape.

On the bright side too, as I am no longer part of the ‘eating out’ group, I don’t have to endure the plan of take away McDonalds today! Given a choice, I’d opt for hospital food any day. Instead I had McHospital McCauliflower, McPasta and McIcecream, all while sitting with another patient who is as chatty as a gagged corpse.
Onwards and slightly upwards….

Back on the Road!!

Week 5, another weekly review meeting and still making upwards progress. Baby steps but definitely going in the right direction. It’s a difficult line to tread as any less weight gain and I’d feel like I was failing myself and everyone else but too much too soon and there’s the danger of scaring myself back to square one! At the moment I feel comfortable with what I have achieved so far and the clinical team appear to be happy that I have made good progress. The big news is that I have also finally been given the go ahead to drive my poor unloved car again!!! I drove home (accompanied) from Oxford today; my first drive since January and I remembered where the brakes are and everything!

The science behind weight restoration is interesting and it seems not fully understood. Eating loads after being in a prolonged state of starvation doesn’t necessarily cause rapid weight gain, and it’s actually harder to put the weight back on than to lose it. The body often goes into a state of hypermetabolism which causes lovely symptoms such as night sweats where it tries to get rid of all the excess energy through heat (stupid body) and crashing headaches for which I am only allowed one paracetamol ‘for weight reasons’. One paracetamol really doesn’t hit the spot, believe me.

There are still rocky moments to navigate – we went out for a coffee and snack at the weekend and I had a bit of a meltdown with choosing a snack from a kiosk. The woman behind the counter was clearly getting shirty with me picking up each snack bar in turn, scrutinising the label and then discarding it, wailing ‘I just can’t choose’ – she must have thought I was insane, which in fact wouldn’t be far from the truth.

Continuing on the theme of madness, my allotted 10 minutes escape time from the ward today coincided with a sharp downpour so I popped into another part of the hospital to take shelter. This happened to be the reception to one of the secure psychiatric wards. I could, (but won’t) hide the fact that the unit I am attending is part of what used to be the Oxford Lunatic Asylum opened in 1826. People with eating disorders are thankfully generally not mad in the traditional sense but the area I strayed into gave me the creeps in a One Flew over the Cuckoos Nest way…I could still hear the screams and detect the smell of burning flesh from centuries past. Oddly, as a child I had recurring nightmares of being locked up in such a place and unable to prove my sanity. Funny that.

I must be feeling a little more like myself as I also added my first anonymous suggestions to the box ahead of the weekly ‘community meeting’ tomorrow. One was to request the addition of a goldfish to the ward for therapeutic reasons; though someone mentioned it would need to be PAT tested first. Who would have thought that a goldfish is actually defined as a portable appliance…

Must keep swimming….

The good news is that we had a lovely weekend mooching around the shops on Saturday and then visiting Canons Ashby with a picnic on Sunday. Wish I’d managed the actual tea shop for food but then again the cakes in there were huge! (As were one or two of the customers) Later, I spent some time with the ponies. I had more energy than I have had for months and was able to put this to good although not necessarily physically beneficial use. It made me realise that there is light at the end of the tunnel and not only is recovery possible but the quality of my life will be so much better and is absolutely worth aiming for. It’s difficult to keep a grasp of this at all times but there are some occasional glimpses of what it is like to be fit and healthy and not allowing the punishing perfectionism to always gain precedence over living in the moment and enjoying being alive.

Pony time…..


I am attempting to keep on an even keel and think I am managing quite well for the most part though at the end of last week I had another unexpected and unannounced cliff-fall moment in an art therapy session! It would be helpful if I could have had some warning next time please brain, but it never seems to happen that way. The remit was to draw a pie chart with a pictorial representation of the most important things in your life. I drew a literal pie on an NHS plate (no food obsession or anything!) and divided my pie into three. One part was work; I drew a desk and a huge pile of files about to squash me. Second was family and friends; I was standing to one side while everyone else was together. The third was my need to exercise and be out in the open air. When I realised how important but how stressful these things are to me and what I had actually lost I was in pieces. I protect myself very successfully almost all of the time by putting everything into a box and firmly sticking down the lid. Not sure I really like it to be opened.

Jeremy Corbyn spotted at Canons Ashby…


Today I attended the weekly clinical team meeting. It was not as positive as I hoped. I have made a little less progress than I could have which is partly down to the challenge I have with eating the high calorie desserts at home but mainly because I have been doing a little too much exercise. That’s not to say that I have been running half marathons, far from it, but there is clearly a balance to be struck, and when spending time with other normal people, it’s very difficult not to join in with the activity. Especially if you’re me. I think Cornwall is going to be challenging next weekend unless I tie myself to a chair! I was disappointed too that I still wasn’t given the go ahead to drive thanks to some results not being quite as they should be. Ah well. Onwards and upwards. Next week maybe.

 

Beano, you have life so right. This should be me.

Backwards Days

Not the best of days yesterday. Not at all sure why but I felt so much better so quickly last weekend after the initial relief of getting some help that I think my brain was lagging behind with the processing. It caught up with me on Friday morning without warning. I walked into the clinic, everyone was lined up to go for breakfast and instead of joining in I stayed on the sofa in the lounge. I just couldn’t face the torment of breakfast and while part of me was hoping and expecting that someone would notice, Dave was loving the fact that they hadn’t. I am not sure how they didn’t see that I was missing but it just served to bolster my feeling of being invisible and unimportant.

Somehow my subversion was discovered about an hour later and I was subjected to eating alone in the dining room with a member of staff hovering over my every move. Consequently the whole episode had no value apart from making me feel a whole lot worse. For some reason Dave wanted me to continue to push the boundaries, and at the snack session later I managed to pretend I’d eaten my hula hoops and dispense of an almost whole packet. What is disturbing is that part of me wanted to be found out and part of me really did not and I didn’t want to bring any attention to myself at all. I wish I could find some coping strategies to put in place when this happens because it really floors me. I spent most of the day alone in the quiet room or in a corner of the corridor with my head on my knees thinking only I am here yet not here.  Later, I pulled myself together, joined the crew in the lounge but then unsociably fell asleep for two hours on the plastic sofa. Not the best day ever and I am now left feeling chastened and altogether stupid.

Apologies if this post does not display the inspiration and courage that it should but I guess it does at least serve to underline that recovery is not a smooth road. Today I plan to try and do something nice and challenge myself by having lunch out and doing some shopping. The other thing I am going to do is to plan my food in advance with military precision as this seems to help with the indecisiveness.

On the subject of retail therapy, at the clinic last week we had a conversation about clothes, and though on the face of it, worrying about fashion should be last thing on my mind, it strangely does matter quite a lot. There’s a whole emotional component to clothes and size and changing room mirrors that doesn’t sit at all well with eating disorders. I have avoided buying clothes for a long time on the basis that my rational self does not intend to stay this thin, so really, why bother? I finally decided last week to buy some jeans that would make me look slightly less like a shrunken old lady. I couldn’t face the changing room so took them home to try on. I ended up returning them to the shop in fact as they didn’t fit, but the assistant’s comment as she held them up of ‘wow you do have a tiny waist’ was not at all helpful. First of all, Dave loved it, which is never going to be a good thing, but secondly, I took exception to the fact she felt the need to comment at all. If I had been overweight she would never have held them up and commented that I had a huge waist. ‘Gosh, you really are quite fat aren’t you?’. Clearly, our society is still obsessed with thin and small equating to a good thing, whereas curvy and fat just is not. This, I suspect, is something which will not change any time soon, if ever. Anyway, for now, I am sticking to dresses and elasticated waists that I can ‘grow into’ without having too much of a crisis. When clothes become too small for me, I plan to instantly donate them to Oxfam as I am categorically not going back to this thin place and will not need them again.