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.

Free Will or Obedience 

So yesterday I learned that in the last 7 days I’ve managed to lose 3 weeks worth of weight gain and thus 3 weeks are added to my recovery time. I am completely baffled as to how this can be the case. Yes I have been some cutting corners with the meal plan here and there, as I have every week, I am after all no saint, but I have been eating at the very least adequately. I can only think it must be down to over-activity, or that the NHS scales were broken. The worst thing by far is that I have not yet been given the opportunity to talk this through properly with any professional and so feel confused and frustrated by the loss of yet another 3 weeks of my life.

I feel increasingly as if I am in a reverse concentration camp where hard labour is forbidden and food is enforced, or perhaps a character in a Kafka novel. I have lost my free will. There is a nightmarish oppressive quality underlying every moment of every day that I am here. It is a setting that straddles a dystopian fantasy and reality. I am hopeless yet full of hope. Recovery is a palace which seems vast and impossible to attain. I am overwhelmed by the sense of impossibility and futility, yet I have an immense yearning and hope. These incompatible sensations all assail me at the same time. It makes me want to run so I can leave it behind.

I need to escape this place for my own sanity yet escape is fraught with danger; I know I need to try and engage with the process for my own good. It doesn’t help that I’ve put myself back by 3 weeks – it obviates the whole reason I am going though the torture, but as Winston Churchill said, if you’re going through hell, keep going.

Today, I had to use every last ounce of determination even to drive to the hospital. Once here, I am yet again overwhelmed by the rigid regulations and lack of freedom. It’s slowly but effectively killing my sense of self. I feel both out of place yet part of a disordered and disjointed community.

I skipped the nutrition group this morning because I felt unable to take more of the constant brainwashing and asked if instead I could have a walk. I was allowed 5 minutes but had to leave my bag and keys behind. Every part of me wanted to rebel and drive away but I didn’t- I walked for 5 minutes and returned to the burrow like a good bunny.

Today we are having a lunch picnic in a local park. Let me make this clear, this is not a special treat. Apparently taking sandwiches already made up is disordered. Normal people make sandwiches in situ. Really? Meal deals from Tesco are clearly only for the eating disordered. This picnic has already been the subject of far too much discussion, both formal and informal. Apparently on a picnic you wouldn’t add margarine to a bread roll so we have to eat them dry. We need to make up for this by the addition of a chocolate bar. This edict necessitated a meeting which lasted a whole hour and we still have both the picnic and the picnic post mortem to look forward to later. How can I have come to this?

I desperately want to recover and I acknowledge I need the help to do so but right now i’m not sure I can take much more of the punishment.

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.

Religious belief and anorexia 

I am fascinated by religion. I find it difficult to comprehend how it makes any sense conceptually (though I can see the benefits of having a direct line to a higher authority who doesn’t create conflict by answering back in any worldly sense). I actively seek conversation with those who make a point of wearing their religion on their sleeve so that I can gain some insight or even an answer to the fundamental question; why do you believe in an abstract theory without hard evidence that it exists and proof that it actually does more good than harm in a global sense?
This is clearly a huge question which can’t be explored in any satisfactory way in a blog post but I have begun to wonder at the connections between mental health, eating disorders in particular, and religion.

1. Reward and Punishment

Eating disorders are inextricably linked with the idea of reward and punishment. Food restriction for me at least is a compensatory behaviour for an over-sensitivity to both. It’s not about the search for the holy grail of thinness but if things go wrong, I can restore my inner balance by simply restricting my food intake. If things are good I can reward myself with a meal. This has clear parallels with religion, or at least with spirituality (being the relationship with a transcendent being beyond and separate to oneself). Religion is after all, is all about heaven and hell – the ultimate reward and punishment. And let’s face it, over-eating deserves divine punishment given that gluttony is named as one of the seven deadly sins. At the root of most religions is the idea of self sacrifice leading to a guaranteed fast track to heaven. At worst and most extreme, this can take the form of suicide bombers or driving lorries along pavements in a perverse attempt obtain salvation, at best it amounts to agreeing to arrange the church flowers because you feel you ought to despite secretly preferring to go shopping instead. Basically, a believer gets something out of religion, why else bother? But nothing comes free; there is always a payback. Failing to comply with the ‘rules’ of a religion instigates a guilt which can only be negative and self destructive.

The central teaching of any religion is that you can be rewarded with more love and happiness in the afterlife if you are compliant with its teachings. If you do bad things you will be punished unless you can show remorse in the form of some sort of physically or mentally harmful penance. This may take the form of walking ten miles with stones in your shoes, deliberate social isolation or, guess what….food restriction.

2. Fasting

Fasting is interestingly an important component to all main religions. The idea being that if you restrict your food intake, whether by the more extreme Ramadan or simply by giving up chocolate (funny how people never give up salad) for Lent, then you are punishing yourself to ‘get closer to God’, which is the ultimate reward. Nearness to the deity is partly achieved by the heightened sense of clarity one gets from lack of food. Again, clear parallels with anorexia, where starvation improves mental functioning short term by creating a ‘high’. This is purely a self-denial, and so how can it fail to to be disordered? If God is benign how could he or she approve or even care if you physically torture yourself by not eating or drinking in daylight hours in intense heat for a whole month? This behaviour is something clearly thought up by humans to self-comfort, the theory being that only those who sacrifice are enlightened and rewarded and the outside world does not appreciate the lifestyle choice they have made. It sustains an illusion of exclusivity and importance which is almost addictive.

There is also a link between certain foods and morality. Why else is ice cream advertised with words such as ‘heavenly’ ‘decadent’ or ‘purity’? Eating thistle smoothies is on the other hand can be seen as a form of self sacrifice to the health god.

3. The all important deity

This is scarily close to the idea of people with an eating disorder being ruled by some type of pseudo-deity (in my case, Dave, but I could easily re-name him God). Dave is oddly a spiritual dimension of an illness almost akin to a cult. Does this mean therefore that religion could be a mental illness?

4. Power and control 

Another important dimension to religion is the pursuit of power. By being involved in a belief system that is in fact out of your control with the ultimate goal of satisfying that all important being which is both part and apart from yourself, then there must be an element of self sacrifice giving you a sense of control over something which is merely an abstract concept. Simply put, by self sacrifice you are gaining a physical manifestation of what was merely conceptual and you therefore are gaining some individual control over what, in fact, does not encompass the individual. Fasting is a form of control, an attempted taking back of power by the individual, which is exactly how anorexia manifests itself.

Like an eating disorder, religion can therefore reduce the sense of self and identity which is subsumed into the all important deity.

5. The delusion

Religious people often say that they will ‘pray for you’. This is not a substitute for actually taking action. Praying can often be a convenient avoidance technique for facing reality. The religious often pass a problem over to a higher authority so they are somehow absolved from responsibility. This does not in fact help the intended recipient, however well meant, unless it is followed by tangible action. Similarly, the sense of control and well-being of having somehow absolved oneself from taking the responsibility of self-love sometimes felt particularly in the early stages of an eating disorder are illusory. It’s a form of self deception either way.

It could be argued that the eating disordered and the religious cannot be directly compared as they have different motivations. Cleary, all religious people do not have a fear of weight gain. Many people with eating disorders also embrace and obtain solace from religion and I totally respect that. However, I feel that in either case this is permitting an idealogical mindset which creates obsession and control whatever it’s root.

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!

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…