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 !!

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.

It’s Just a Piece of Toast

Having had three children, held down a demanding professional job and faced many other challenges in life, I would not expect to be floored by a piece of toast, but the fact that I have just goes to demonstrate the sheer power and torture anorexia can wield. If you can even begin to understand the effect this simple piece of toast can have, you may gain a glimpse of quite how fierce and painful this illness can be. Fighting it is so much harder than just giving into it and accepting ill health.
Today I faced a new challenge, I have graduated to the ‘upstairs dining room’ which allows for more freedom and less measuring but brings its own challenges. This morning, rather than making 2 slices of toast from the pre-sliced loaf of bread, we had to cut our own bread. The person who got there first made the usual mess of the loaf. As we all know, it’s a real skill being able to slice a very fresh loaf precisely. Being last to the loaf, I therefore ended up with 2 slices of bread looking like door stops. So much so that they wouldn’t fit into the toaster. I had no option but to cram them in, spread them (too) liberally with peanut butter and then…EAT THEM BOTH. Carb overload. Now this may seem like an amusing story, but believe me, the way I suffered afterwards was not in any way funny. Think the anxiety levels you would have if you were running late for an important job interview, got into your car only to find that it wouldn’t start. Or maybe that call you receive about a family member who has had an accident which starts ‘I don’t want you to panic but…’ then you have some idea of the devastating force of the illness. It’s a panic and torture which is inescapable and rationality plays no part. Yes, it’s just a piece of toast but it has the power to create such a forceful sense of terror and there’s nowhere to run away from it. This is exactly the reason why I so often feel the need to exercise, it’s the only thing which alleviates the pain, which can only be described as a mental version of stubbing your toe, repeatedly, on a concrete step. Ouch.

Running through fields of wheat (anarchist!)

Today’s other challenge was going out for lunch with some of the other patients. This was interestingly, easier than the toast incident, as it was carefully planned and I saw the menu in advance. We all suffered food envy in that everyone admitted to being jealous that other people’s meals looked smaller than theirs. I really hope that fellow diners didn’t overhear our conversation about who had the most chips as they would have thought we’d escaped from the nearest mental institution. Oh wait….we had!  

I am left feeling really quite battered and stressed this evening. I am so lucky that I can come home and have a wonderful and supportive family and friends that understand and are there for me. I try very hard, as I have all my life, not to be hurt by the lack of support from a few key people of whom I still foolishly have high expectations and who I now realise I cannot change. I can only change how I react and it is time that I accept this and move on.

Rosie the super-hero and the amazing shrinking skeleton.

So had a temporary hiccup and consequential lapse of reason / loss of sense of humour at the beginning of this week upon receiving the results of my bone scan, which I had already decided in my head would be fine. I genuinely did not expect the degree of bonelessness that it revealed which has been a huge wake up call. This illness has now become potentially life changing and not in a good way. I honestly believed I was invincible so the confirmation of inner fragility was quite a shock. Plans for going skiing this winter and my goal of finally buying another horse when I recover have clearly been scuppered for now so I am now devising alternative methods of conquering the world. Hopefully the osteoporosis may be reversible to some extent though I am walking around at the moment fearing I may trip and part of me fall off.

Since forever, when stressed my go-to comfort has always been to skip meals (who needs food when they are a super-hero?) so I have fallen off the tightrope a bit this week, though am now feeling tentatively better. On that theme I thought I’d reinstate the stiff upper lip and visit some positive thoughts:

Reasons to eat:

1. Social interaction. Self isolation and anorexia go hand in hand and at my worst (and this persists on a bad day) , it takes far too much effort even to reply to a text message, crazy though it may sound. Last week, the farrier came to trim the ponies’ feet when I was at home, and rather than calling someone else when I saw him lurking by the back door, I went out to see him, caught the ponies and we had a 45 minute conversation about politics. Sounds like such a small thing but significant (for me) nonetheless. Later in the week, I spoke to someone at the practice nets in the village rather than diverting around 2 fields and through the graveyard to avoid them. I am usually quite sociable, and at work, client contact is the part of my job that I enjoy the most, so this compelling desire to avoid people is both contrary to my personality and torturing.

2. Restoration of health meaning life can be resumed as normal as much as possible including pushing the boundaries simply for the fun of it. (Climbing mountains in flip flops, galloping horses on a beach, sledging round trees, running out of control down a hill….)

3. Being able to watch a film or TV programme all the way through without lapse of concentration and ending up not knowing who killed who and why.

4. Being able to sit down comfortably. Boney bum + hard chair = ouch.

5. Not having to cover all parts of body in hot weather because they look truly awful.

6. Being able to go back to work so I can feel useful and not simply be a parasite.

7. Being able to buy clothes without worrying I may get fat and grow out of them.

8. Not spending half my life in a hospital. Six weeks is already six weeks too long.

9. Being able to plan ahead more than a few days, and not having to ask permission to wee, have a drink of water, have one measly paracetamol, go on holiday……

10. Being able to eat without considering the calories. (Though the last time I did this was probably in the 1980s)

11. Realising I can still have fun without running round at full pelt (see below)

12.  Throwing away the bathroom scales because I JUST DON’T CARE..

Vegetable patch (or slug party venue)

Family fake tattoo night

Makeshift croquet lawn (sorry ponies, you’ve been marginalised)

Apart from this, I have had my first 6 weekly review this week which helped me feel more positive as it confirmed that I am making some progress (woof, pat on the head). I know from the numbers on the scale that this is the case but it somehow helps when it is verbalised. Bit frustrated that holiday plans for August were not given the go ahead, partly because 2 weeks away was not recommended by the team for recovery (looking ahead does not seem within their capabilities) and partly because having a huge waiting list, they couldn’t keep my place open that long which is more understandable but still annoying. It may be that I am recovered enough to be discharged by then anyway but we can’t take the chance and book flights right now which only adds to the guilt of the effect this thing is having on the family.

I am now being increasingly affected by the attitude of other patients in the clinic and what at first was a novelty is becoming a never ending repeat of the same old issues. I’m seeing this as a sign that I’m getting better, but listening to fully grown people complain about the outrageous selfishness of others when it comes to yoghurt flavour choices has become more than a little tiresome. I fear institutionalisation because without the support I was failing to recover but the clinic environment creates a false sense of security by cushioning me from the reality of the world and this is something which is not sustainable. Nothing happens overnight so I just have to chalk up every meal as a win and get on with eating my way out!