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.

Life on the Edge 

So I have survived in Camp Eat for a whole week. I’ve been getting by but in an unfocused, numbed sort of way. This is purely self protection as otherwise I’d be tailgating someone right out of that door. I am able to have my two allotted 10 minute walks out with staff while I plod alongside and make desultory conversation but they are not always able to make time to accompany me and so I am having to discover alternative methods of distraction from the anxiety. For someone who is normally constantly on the go (and I know this is exactly what got me into this mess), this is a huge shock to the system.

The crazy camp rules are magnified by being an inpatient. This morning I was awakened at 5.50am to be weighed. There’s a queue for medication 3 times a day and given that I am living with 14 other highly competitive and controlling types of people I’ll leave that particular scenario to your imagination. Everyone is always very polite and controlled but there are undercurrents within the undercurrents. Communication is often by half smiles and glances. Silence at the dinner table is heavy with the unsaid.

I have been engaging with craft activities which is something I would never ordinarily have the time or inclination to do. There’s a whole new world of mosaics, scrap books, painting and colouring which I have enjoyed despite myself. Later, Dave comes and taps me on the metaphorical shoulder and whispers; ‘you must be a head case; fancy you knitting and sticking rather than engaging with a normal productive life. Man up for goodness sake’.

When I feel down I lose the capability to articulate my distress, I can only smile and say I am fine, otherwise I would have to find the means to communicate. I am having to keep the distressed, scared child locked in its cupboard for now.

Bread massacre – who can get he thinnest slice !!

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….

Guys!!! I think I’m still in here somewhere!

This illness is turning out to be a very strange journey and is the most difficult thing I have ever had to tackle in my life. A game of two halves.

I feel like I am two people, the sick patient and then Rosie, the wife, mother, lawyer, person. The connection is weak and I feel torn in two.

Consider this; when discussing with my therapist the possibility of cutting down on the time I spend in hospital, she suggests instead I should think about becoming an inpatient (erm…no), yet at the weekend with my family, my illness is not referred to. I feel I am ill, yet not ill. A broken leg or a cancer would be evident and those around me would make changes to accommodate, but my illness feels unmentionable; it is the elephant in the room and people are afraid to even ask, ‘how are you?’ Or ‘how’s the treatment going? If only they knew all I want to do is to talk about it, but this is a burden I do not want to drop on anyone. I feel trapped by the invisibility; yes I may be thin, but I seem ok, while inside I am screaming.

At home I can sometimes be me, yet my time in the hospital is almost hidden from view. There’s a huge part of me that no longer exists. I don’t have any self esteem while being cared for. I used to talk about work, my plans and hobbies, but I am now a non-person. I am grey and uninteresting. In the hospital am told what to eat and when. I am only allowed to use the toilets at specified times. I can’t go out and walk and walk which is what I really need to do. I have to fill in endless hours with colouring and puzzles. I am a professional woman, yet if someone were to buy me a new puzzle book I think I would cry with gratitude. This is what I have come to.

Discussing the possibility of hiring bikes to cycle round the city walls of Lucca with family no one bats an eyelid. I feel I need to do these things so I don’t let anyone down. Going out for lunch with a dietician in tow, (wake up, how strange does sound people?!), I mention this plan and get a very firm response; this is not acceptable. If I am honest, the whole holiday is deemed unacceptable by the medics yet in the other half of my life it is simply a fun trip. Again, I am torn in two. What is right and what is not? I no longer know.

The agony of knowing that there is so much to do around the house, there is always a pile of ironing, weeding, cleaning, washing, bed changing….constantly being told that I should not be doing these things feels so combative yet how can I leave my poor husband to do everything ? I am forever worrying about what needs doing, and feeling guilty that I should be doing them, yet knowing that to recover, I should be doing nothing. Guilt abounds either way.

The turning of relationships from the carer and planner to the cared for, whose sickness is unmentionable. The painful parallels with childhood. The constant panic that I have ruined my career, and that I will never be successful again. I am working harder than I ever have to come to terms with these things and to recover, and yet I am doing nothing.

Another week looms, here we go again….

A sequel : The Picnic (a horror story)

I thought I’d provide an update on the picnic and it’s post-mortem. I honestly don’t know right now whether I actually feel worse or better after it, but I think on balance the sense of humour has kicked in and I am able to see the absurdity of the whole thing. 

So five of us plus two staff members sat in a field in a circle and were handed out the allotted food. It was all ok, it was just a picnic after all. The sun was out. Of course it wasn’t that simple, one member of the party ate the bread roll, filling and bag of crisps but flatly (and hysterically) refused to eat the chocolate bar. Of course it was not about the actual chocolate bar which was all of 95 calories but a perceived lack of control or a breaking of internal rules. She was clearly finding the situation incredibly difficult. It turned by degrees into a loud and angry discussion, while passers by looked on in interest and the rest of us sat in uncomfortable silence. I was actually mortified but tried to disassociate myself and pretend I was on a desert island, although I am told that this is not a healthy response. What, I wonder would have been a healthy response to someone screaming about a chocolate biscuit in a public place? I haven’t seen the rules. Maybe I should have shouted ‘just eat the bloody chocolate and let’s move on’ very loudly?

Seriously though, I feel a great amount of compassion for the poor girl, goodness knows I have been there. I just wished everyone would shut up. Oddly, another member of the party made a great show of adding an additional slice of chicken to her sandwich, despite professing to be a vegetarian, adding 2 sachets of mayo and eating an extra cake. Funnily enough, the staff did not berate her for this, though in my view this behaviour is just as disordered as not eating enough.

We decamped back to the unit for the post mortem. As you can probably appreciate spending an hour dissecting a picnic is not on my list of life goals. It took all my strength to follow mutely and not just simply walk away and go home. What followed can only be described as a bun fight, with one patient saying that she thought it incredibly unhelpful to her own recovery when one member of the party refused an item of food and the tearful one responding, increasingly distraught, that this reaction was totally selfish. Meanwhile the smug one made it clear to everyone that she in fact had eaten more than her allotted share. Great, well have a certificate.

It leaves me wondering what the hell I have subscribed to. I fear I am in danger of turning madder by the day. I just want to spend my time with normal people doing normal things and earning a living doing something I am good at. That’s all.