And Just Like That...

...everything crumbles again.

I've been doing better the last couple of days. Feeling brighter, more hopeful, more determined to get my life back on track. I've called insurance companies, treatment centres. Reached out for help, dusted off my old DBT manuals, prayed (for those that know me, this one may be a surprise- I'm not exactly religious!) I've been eating better, sleeping better, looking forward to things again.

One of the things that has been occupying my time has been trying to find a treatment program that is either free, or accepts my insurance. I finally found one, after several long conversations with the insurance company. The logistics are tricky. It's in New York, but nowhere near anything- in itself, that wouldn't be a problem, but the program runs from 4pm - 8pm 5 days a week, and is about a 2-hour commute each way. I don't think it's going to be an option. Actually, that's not true. It COULD be an option. But nobody else thinks it is. My mom walked into my room tonight and said, "I think you should just try to see if what's on offer in Edinburgh is enough".

I don't know quite why this has shattered my positivity the way it has. I'd RATHER stay here and improve things at my pace. I'd RATHER settle somewhere for a few months and focus on voluntary work, etc. But I don't know how well it's going to work out. I only seem able to sustain my motivation for a few days at a time, if that. Throw in the recent suicide attempts and I think I'm in over my head at this point in terms of putting things back together on my own.

I don't think 4 hours a day, 5 days a week for a month or so is going to do a great deal in terms of my mental OR physical state, but it might be a jump-start and is at least *something*.

I don't know. I could rent a room for the few weeks, or stay in Edinburgh, or...just flail wildly until someone sees I'm struggling. I WANT so desperately to be able to do this myself. I seem to have lost all concept of what's NORMAL though- how people spend their days, what they eat, what they think about, what they do for fun, how they just get on with "life".

I feel so lost. I want to move forward, I just don't know how at this point.

Less Choice, More Choice...Whaaat?

Some of my decisions have been made for me- for now at least.

Things in London aren't going to work out. So my choices are staying in Edinburgh, or returning to the US. I have a lot to consider. This afternoon has been spent on the phone to insurance companies and programs in the US, and various organizations in the UK.

I like the attitude of providers in the US. Health care is not easily accessible, but the treatment I got, for the most part, was worth fighting for. Sure, some of it was crappy beyond belief, but they all hold the same basic idea that EVERYONE can make a full recovery. I'm looking into various types of programs. I don't know if I want to commit to a long-term program right now- I have nothing stopping me, but I guess...well, I'm scared. I don't know if 3-5 weeks of 4 hours a day is going to make much of a dent in my behaviours/mindset and may make things worse? I don't know.

IF I stay in Edinburgh, the plan is to see my therapist weekly and be monitored by my GP. I've hated the place I go for therapy since I started there. Something about it just really rubs me the wrong way- perhaps the stark contrast between the attitudes there and the attitudes of that in the US. Being written off as a lost cause/hopeless case at the ripe age of 23 when I first went didn't sit well with me.

Staying in Edinburgh means I don't have to get well. I don't have to fight my eating disorder, don't have to face up to my demons and *gasp* move on with my life. I can drift from one low-key job to another, occasionally be admitted to hospital to stabilise, maintain the bare minimum "safe" weight. Forever. And that is what my life would look like- therapy, blood tests, meaningless/boring jobs, the social isolation that anorexia brings. It's a pretty bleak prospect.

The US is somewhere I HAVE to be healthy. It's just not negotiable. And that is what has appealed from day 1- I want to be there? I have to be doing well. No "maintaining the bare minimum weight", no staying in bed for 3 days or walking for 12 hours a day. I have to be eating properly, have to be working, have to be healthy. It works for me because I have so much social support and love the lifestyle/culture/family I have there so much that I desperately WANT to be a part of LIFE. Not like here where I honestly don't give a rat's a** about anything.

I am trying to think of ways of bringing what I love about NY to the UK...it's hard. Things are different. People are different. Life is different. I know that peace/happiness/whatever starts from within, but I also believe that environment is where it breeds.

So many things to think about right now.

Meanwhile, I need to figure out how the hell I am going to add in a tablespoon of peanut butter to tomorrow's meal plan...(and yes, I am aware of the fact that eating 90 calories worth of peanut butter should be the LAST thing on a 26 year old's mind).

Uncertainty Breeds Opportunity?

I'm still swinging wildly between highs and lows, and still have no idea what is going on.

I've realised a few things over the years- the main one being that without a definite plan, I tend to go a little crazy. Also that even when I have a definite plan, I'm looking for the *next* thing which results in me being crazy. This knowledge is all fine and well- doing something with it is a whole different story.

The current plan is...there is none. I still have the option of going to London I think. I'll find out more on that front on Wednesday. Honestly? I hope that the day program says they are only offering OP initially because then I can cross London off my list without having to make a decision myself. I know that I want to be in New York, and I know that in order to get there, I need to be stable enough to work full-time without having some kind of breakdown/relapse. Struggling with anorexia and dealing with the US health care system is difficult. Struggling with suicidal ideation and dealing with the US health care system is NOT something I want to face (leather restraints and visions of "One Flew Over The Cuckoo's Nest" anyone?)

So somehow I need to get back onto my feet and figure out how this time in New York will be different.

AHA!

Back to the drawing board.

Wednesday is the day I find out about London and what the eating disorders service there are recommending. I also meet with my therapist in Edinburgh (lovely woman who told me I am a waste of NHS resources...quite a self-esteem boost). I also have an interview for a part-time job which sounds interesting/cool/fun/useful (in terms of something concrete on my resume/experience and all that jazz...)

And So It Goes...

I left hospital on Friday after my assessment with the eating disorders team. I don't know yet what treatment they will offer me, or whether or not I have the motivation/energy to keep pushing through with treatment and trying to make a life here in London. I am finding it so difficult to function on a day-to-day basis, that it's impossible to think further down the line than the next few minutes/hours.

I, rather impulsively, booked a trip to New York as soon as I arrived at my friend's house. I leave in less than 72 hours. I am too caught up in depression and anxiety to feel anything but dread about this. I am GLAD that I am getting a break. It's been a long time since I have gone to New York for a "holiday" and if I can manage to relax, it will no doubt do me the world of good. So far my thoughts are swinging wildly between trying to land a job whilst I am there and staying, seeking treatment there, coming back and moving back to Scotland, coming back and engaging in treatment in London, then the back-up plan of just calling it quits and repeating the recent incident. I don't know what I want right now, never mind the steps involved to get there.

At least in New York I will feel safe, be spending time with family and friends and not surrounded by the temptations and negativity pulsing through my veins right now.

My plan is to have no plan- see if going with the flow for a week helps. Danger of that is that I then romanticise New York. Everything is good there. I don't worry about the same things, I have family and social support. I feel safe, loved. Not like the UK where I have support out of NHS guidelines dictating "duty of care", or Edinburgh where I don't even have that.

I feel like I do nothing but whine and complain in this blog. I originally started it as a journal of my recovery, my progress, my unfolding LIFE. Instead it logs my peaks and falls, my slow declines, my rapid mood swings and impulsive choices.

I have more coping skills than I let myself use. I honestly forget they are there in those moments of "oh my god!!!!!" then regret it once I am face with the consequences of my actions. I'm not used to consequences anymore...in the US, my actions had repercussions which I ignored (didn't like what the doctor said? pfft...go to a different doctor) and in Scotland, there were no consequences ("you want to lose xlbs/take x pills/do xyz...go ahead!") There is a part of me that KNOWS, full well, that any consequences are felt most harshly by ME. I hurt myself, impact MY life when I do these things, yet I can justify it to myself time and time again, because honestly? I don't care enough about *me* to stop most of the time.

Who Decided To Call This A "Funny Farm"?

I am feeling strangely disjointed right now. Everything is still up in the air which is driving me insane- I obsessively plan everything as far in advance as possible, from where I am going right down to what I will eat. I like details, like consistency, like to be in control. So many things are in other people's hand right now- hands I don't trust, and hands I want to slap away from keeping hold of *my* future.

I'm getting confusing messages from various people regarding my treatment, living options, aftercare, relationships. Different people say different things and I'm not even sure who is in charge or who is doing what. I should be doing it. But I can't. This is all tied up to bureaucracies (seriously- right now various organisations are literally arguing about whose responsibility I am for housing since nobody is able to determine my last fixed address). Where I live affects where I go for treatment. Where go for treatment affects outcome. Sad, but true. The NHS is AMAZING purely because it exists, but it truly has earned it's nickname "the postcode lottery".

But I digress.

I am grappling around, making lots of phone calls, speaking to lots of people- trying to figure out what my options are and what the best course of action is right now.

Meanwhile, I am still in hospital. There is nothing funny about this farm. From the second my eyes snap open at 5 am, I am surrounded by noise. One patients singing at the top of his voice as he paces up and down, banging the walls. One person darting around muttering to nobody in particular, then yelling out, "do you understand?" repeatedly. One patient who laughs hysterically 24/7 (yes, even in his sleep), then there are the ones who appear relatively "normal" then mid-conversation you realise that the topic has switched to something so bizarre you are suddenly reminded exactly where you are living. Needless to say, I spend as much time going out for long walks as possible. I am walking about 6-7 hours a day- I go out, keep my head down and pound the streets until I am too tired to think anymore. I can't "think" because my mind takes me back to the same thoughts, the same feelings, the same desperation that led me here in the first place. This is a REALLY difficult place to live in. It's even harder to think that whilst I may not talk to imaginary people or hold a belief system that the world is conspiring against me, I am enough in need of help that the same doctors treating the other patients, deem me too much of a risk to myself to leave.

I just want to feel better. This isn't a healing environment. My eating disorder runs rampant, my emotions are wildly out of control, I can't sleep and with each passing moment, feel more and more out of touch with reality. But I both need and want help. I know the steps to take, and I am NOT just making excuses, but I need to be in a different environment before anything can even have the potential to change. My priority right here and right now is getting through each hour. Between the chaos on the ward and the chaos in my head, it's proving difficult. But I am managing. Somehow.

The differences between the US and UK health care systems

I have experienced health care on both sides of the pond, so whilst some may disagree with my opinions, I believe them to be valid.

In the UK, it's all about maximising resources, saving money, damage control/harm reduction. I've been shunted from program to program, deemed "unresponsive"/chronic and had several years of "treatment" where the primary focus was on living with my eating disorder. I was taught how to maintain a low weight in as stable a way as possible. I was taught how to minimise the damage I was doing to my body. This, to me, was great. I was tired of living in psychiatric units. I was tired of being held down and force-fed, tired of my body being controlled by others. Once I turned 21, the focus changed and in order to prevent wasting more money on treatment I wasn't making use of*, it was all about helping me to avoid medical crisis after medical crisis, and manage my condition in the community. This is fine and well. Everybody knows that eating disorders can kill people. What people don't know is that if it doesn't kill you straightaway, you live, day in and day out, within a vacuum- nothing is as important as food and weight. You think of nothing else. You have no social life because your malnourished state is causing such obsessive thinking that you cannot hold a conversation, never mind relax over drinks with friends (friends? oh- did nobody tell you that you lose them all? They have lives to live that DON'T revolve around calories/numbers). Anyway. Back to my point. I was being taught how to stay entrenched in my illness without really realising the impact this would have. It wasn't just a case of being a normal functioning human being who happens to be rather thin. It was more a case of being left to my own devices knowing that there would be some intervention only if and when I should happen to collapse in the street and somebody calls an ambulance. Fair enough. The National Health Service has spent a fortune on my treatment- money that maybe could have been better spent elsewhere. Maybe on something other than just refeeding. Or on a program better suited to an anorexic 15 year old than a juvenile detention centre (after one doctor washed his hands of me and nobody knew quite what to do with this child who would just not be normal dammit)

So, yes. I've had my fair share of NHS treatment and quite frankly, would not be alive today without it. But...there's always a but. Maybe I am being a little too 'Pollyanna'-ish about it, but I still believe that there is a better life out there for me. I don't think I have to settle for what I currently have. I don't want the life that the NHS has mapped out for me- several more years of outpatient weigh-ins/check-ins, doped up on psychiatric medications, too stuck in my own world to hold down a job/live independently/have a *gasp* life.

This train of thought was what prompted me to try a different approach. The NHS was (and remains) a closed door in terms of actual help with a true recovery for me. I looked elsewhere and was very fortunate to qualify for a research study in America. I do consider myself VERY lucky to be offered a place on this program. The treatment was free because I participated in research. From the word "go", it was clear that they KNEW recovery was possible. They weren't even going to entertain the idea that living with an eating disorder was an option. No sir-ee. This was a whole-hog "refeed/fix the brain/eat like a normal person/you can do it" program. I got to a healthy weight for the first time in about 6 years. I ate pizza and French toast. I started a part-time job, a part-time class at university, met new people...got a life. Things were starting to take on a new and exciting form for me.

I graduated from the program, and for follow-up, attended a world-renowned treatment centre's day program. Don't let the name fool you kids- you don't always get exactly what it says on the label. This was a "wham bam thank you ma'am" program. You paid a rather disgusting amount of money just to be scrutinised as you cut your sandwich into quarters, and sat in endless hours of silence as the groups were facilitated by robotic clones who seemed brainwashed into saying little more than, "that is inappropriate conversation" should we even dare to utter the slightest reference to food/weight/body image/celebrities/men/media/fashion (hence the silence- you can only talk about the weather for so long!). The first signs of struggling, you were issued a "contract"- break the contract and you go to a higher level of care (oh, and what do you know? they even OFFER a higher level of care, at...what a surprise! An even higher cost!) I didn't technically break my contract, but it came to a point where I had "saturated my time on the program". Their explanation was that I would not get more benefit from the delights they offered. The reality was that I was paying the sliding-scale fee, and after a certain length of time, they wanted to give my space to somebody paying the full cost. Fair play. Business is business.

WAIT! NO!

Business should not be *just* business when it comes to health care. What about the patient? Where do they come in? Isn't their health a priority? Nope. Not if they don't have the money or the potential to sue at some point. You have enough to pay for treatment but not for a lawyer? You're home free. You have semi-decent insurance? They'll take you, all concerned and caring, then 3 days later kick you out when insurance pulls out. All of a sudden you go from being "in desperate need of help/support/observation", to "there's no more money- pack your bags". Seriously. I've seen it happen.

Americans may read this and not bat an eyelid- it's the system they know. I was shocked. The system, in both countries, is fatally flawed. No, I am not being melodramatic here. I don't even want to imagine how many people die each year as a result of the US money-making machine that they (almost laughably) call "Health care", and the British system, whilst free, is almost as bad with the "postcode lottery" and "care in the community at any/all costs" approach they take.

Either way, it's not your illness or symptoms that determine what kind of treatment you get. Whether it's an eating disorder or something completely different (cancer, diabetes, a broken bone), in the UK it's about spending as little money as possible to stop you racking up a huge bill to the Government. In the US it's about what insurance you have and whether that person sitting at the admin desk in the insurance office decides whether or not today is your lucky day (I wonder if they use some kind of magic-8 ball system? Or a spin-the-bottle type game each time a claim comes through?..)

Don't get me wrong. There are huge benefits to both systems too. I have seen some excellent doctors in both the UK and US. I've had some superb treatment both sides of the pond. I've met genuinely caring and compassionate people who really DO want to help patients. But they sadly seem to be few and far between.

Just my $0.02. feel free to disagree.


* quite how you make use of being held down and having someone stick a tube up your nose, I don't know