Second Chances

About a month ago I was arrested on a Section 136 by the police for my own safety (or whatever they say it is for), taken to a ‘Place of Safety Assessment Unit (PSAU) at the local mental health unit, and then placed onto a Section 2.

The idea of a voluntary admission had been raised that morning, but I was absolutely done with hospital, or to be frank, believing anything was going to change how I felt. I just remember feeling like it was it. That nothing was going to help. That whether I wanted it to be the case or not, I was done.

Fast forward to now and there are two sentences in my mind, and while they contradict each other completely, they are both as true as each other.

  1. Everything has changed since that day
  2. Nothing has changed since that day

I scraped my way out of a Section 3 in less than 24 hours after my discharge, when the police once again put me on a Section 136. I felt not a lot different on leaving the ward, and in many ways I still don’t.

But then… in some ways I do. I have moments where I feel so much better, it is almost unbelievable. And other moments where I feel the same, or perhaps even worse – and this is an extremely confusing place to be in; especially when sometimes I feel better and worse at the same time.

The biggest thing I have noticed in terms of positive changes, is that I have applied for two jobs, and been offered an interview for one. I just would not have applied a month ago, and irrespective of my chances of actually getting said job, it feels like such a huge step forward to even be trying.

But of course, my brain is my brain and it is doing it’s usual brain stuff. I am torn between two people, two lives. The ‘I want it all’ person, the determined, happy, positive me. The me that believes in everything, who wants to thrive. Who sits and cries because I am just so overwhelmed by the support I receive, and the journey I have taken (gosh, that is awfully cheesy for me!) The me where I just want to spread happiness. Where I enjoy the simplest of things and appreciate even just breathing.

And then there’s the other side; I don’t want anything. I want to give up. There is no point, no hope. I am done.

Writing about what that part feels like is difficult. It makes me feel vulnerable. All I can manage to say is that I end up taking extra medication to keep me asleep, or I lay on my bedroom  floor for hours. I have hours that disappear, like I have been laid there and left my body. Then hours where I am flicking between crying, frustration at myself, and sudden plans in my head that I think are solutions, but involve things I do not really want to do (things which will not really help). Sometimes I do the things I do not want to do.

Like I said, sometimes I feel just one way or the other, other times I feel like both of these people at once. Sometimes I cry because I think I am about to give up, and I am upset because of everything I stand to lose in doing so. I cry at the life I wouldn’t get to live, the people I would hurt, and the hope I would shatter. I cry for all of the things I won’t get to do; and yet feel like no matter how much I want to fight, I cannot.

This is very honest for me – but it feels important for people to know that they are not alone in battling between two selves. I know many times professionals may state that the “real” you is the one who is positive. I would not say that (and neither would other professionals). Both are real. Both are very real. But that is the point – as real as the part of you is that wants to give up, so is the part of you that wants to fight.

I guess while we still have both parts of us there, we have to continue and see where our journeys lead. You can always give up; giving up is not something that is a one time only offer. But, when you do truly give up once and for all, fighting will never be an option again.

My friend died after years upon years of fighting with BPD and Anorexia Nervosa. I wish so badly that I could rewind to that day, and do something to give her another chance to try again. I am not keen on using the word ‘chance’, because chances are generally given when we have done something wrong, but I am sure you will get what I mean.

I was dragged to a morning meeting once in hospital last year. I missed them every day, but on this one day a nurse bribed me into it, saying she would only let me go out for my walk if I attended, so I did. They went around in the circle and asked everyone what they were grateful for today. I said “second chances”. The context was different – I had done something the day before that would have given the staff reason to take my leave off me, but they had taken the time to understand the situation, and not just used a blanket rule of automatically taking away said leave; I got my walk.

I have had lots of what you could call “second chances”. Sometimes I have given them to myself, and sometimes by the amazing friends and professionals in my life who have helped me when I could not help myself.

I do not know that if I went back in time, and helped my friend survive that day…I do not know if she would have still ended up in the situation she did. But, I do know that if she had the right support to get through to another day, things may have changed for her; she may be sat here right now glad to be alive. She did not get that chance.

I really hope that for as long as I truly want them, I keep getting chances to try. To try, and try, and try again. But I also understand the realities of mental illness, and that all we can do is fight, make the most of the time we do have, and really… our destiny is in our hands, and what we want to do, or not do, is fundamentally our choice; our right.

And all you can do is take things a day at a time.

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EDAW 2018: One foot still in my eating disorder

It’s Eating Disorder Awareness Week and usually I would at least intend to do something, but this year I have not. I came out of hospital last week, and while I had one article planned for someone else, nothing has materialised.

But… it’s not just that. I think I have got to a point where it feels, at least for me, like something I need to distance myself from to an extent. Or perhaps, more to the point, because of the stage I am at in ‘recovery’ from my eating disorder, it feels like I am less entitled to a voice – I look ‘well’, physically I am pretty well, and I am not where I used to be. I am nowhere near where I used to be.

And yet… I am so far from where I want to be. And I think this part, where I am, needs speaking about more. One of my previous posts for EDAW is a post I think summarises a lot of the general stuff I want to say, year in, year out. Raising awareness feels like it needs to change; what we are saying needs to change, and raising awareness is only so good. I mean, most people are aware of eating disorders. The understanding of eating disorders on the other hand, is not always so great.

I look back at when I was diagnosed with Anorexia Nervosa, and the subsequent years upon years of treatment. I received support from CAMHS, and then adult services. Inpatient for eating disorders, inpatient on medical wards, outpatient and day patient. I look back and there are so many things I remember, but more to the point, so many blank gaps; I hear stories of what I was like from my family, of things that happened, and it is like it was not me.

Today I was sat with my my community worker, and we were discussing my eating and exercise. I had a horrible moment where this wave came over me, and all I said was… “I was so unhappy”. And then I said that the word ‘unhappy’ was a poor word to explain how I felt.

It is hard to believe that I was once very underweight. That people approached my Mum in the street concerned about me. That I had to go into hospital on bed rest, be pushed around in a wheelchair, and even when I relapsed, re-entered ‘recovery’ remaining as an outpatient/day patient, I had to go briefly onto a medical ward because it was too dangerous to start eating at home; because of the worries of refeeding syndrome, and how my body would react to food. When people are worried that you starting to eat again could be dangerous, it sounds like the most ridiculous thing ever; that if you are going to start eating more again, you need to go into hospital so they can constantly monitor your bloods, your vitals and your weight.

The biggest thing that always comes back to me was the last time I entered ‘recovery’ from a bad relapse. I had no intention of agreeing to go into hospital for medical stabilisation. I had no intention of getting ‘better’. I definitely had no desire to gain weight. But I went to an appointment, and by the time I got there I was crying my eyes out in the waiting room because I physically could not handle even walking. I saw myself, week on week, find the journey to my appointment harder and harder. I watched my body get weaker until I struggled to make it at all. I was not sure I was going to make it the following week.

I agreed to the admission. Not because I wanted to get better. Not because I wanted to gain weight. I was not even really thinking. All I knew was, I could not carry on.

I went home and in two days leading up to being admitted, I crawled up the stairs to get to bed because I could not walk. And I sat in front of my psychiatrist and I realised… if she told me she was crawling to bed because her body was so weak from starvation that she could not walk, that if someone the same age as me (19), said that… I would be terrified for them. I would feel sorry for them. I would feel… just shocked that someone could be in that state.

And I remember on the ward, in the bathroom getting changed, after avoiding mirrors for months, I saw my full body naked… and I cried. I saw what everyone else was seeing. I saw why my Mum refused to hug me. I saw that there was barely any ‘me’ left – and while I mean that physically, really, I mean it in every sense possible.

So yes, I was a typical patient with anorexia. I was. I was underweight, anaemic, low blood pressure, osteoporosis, refusing to eat, crying over food, crying at being weighed. I was dizzy and weak, my hair was falling out by the bucket, and I had reached the point where I did not want to be alive. Each day was painful to survive, mentally and physically. I felt like I was dying, and really, I was.

But… it does not end there. It has not ended.

Last week I injured myself. I manage being a “healthy” weight by exercising. I force myself to maintain a little below the weight range the eating disorder service I am no longer under, set me. I do not need specialist treatment any more. But god forbid I go over that weight range. God forbid I get an injury and cannot exercise…

Oh. That happened.

And in that happening, it has been a stark reminder over the last few days, of the fact that you can seem ‘recovered’ and ‘better’, but you can still have one foot in your eating disorder.

What does ‘one foot in an eating disorder’ look like? It’s:

  • Maintaining the minimal healthy weight for your age/height, and not accepting that your body might be happier at a slightly higher weight. That a BMI of 18.5-20 does not necessarily = recovered, and that gaining a little more might psychologically do the world of good, as well as physically
  • Micro-managing your eating and exercise to make sure that your weight does not go up (and hoping, deep down, that it will go down)
  • Exercising when you do not want to exercise, it is convincing yourself you do. It is stopping doing weights, because you know cardio will burn more calories, and it is exercising when you have an injury because you are terrified of not burning calories.
  • Judging yourself based on your weight, being critical of certain parts of your body, and letting that control your life to the extent that it is destroying your life.
  • Still not allowing yourself to eat a long list of foods, and punishing yourself if you do. Following routines and rituals around food. Not being able to manage if you cannot eat in your regular routine, or alone, or at home.
  • And it is being incredibly isolated with it; because you are ‘recovered’ in the sense you do not require a referral to eating disorder services. You are physically pretty healthy, and no doctor is going to be worrying over you. You know your weight is healthy ‘enough’, and because of this you do not dare consider that you need to let your weight go up a bit more. You do not dare have a conversation about it, because you think you will be judged… that people will just be thinking “but look at her, she is fine.’

And this is dangerous, because it makes the risk of relapse high.

Personally, I feel confident that I will never go back to where I was. I am very structured with my eating, and I feel dependent on that structure. If I did not have my set meals at set times, not only would my eating disorder become problematic again, but I think it would impact on my other mental health problems. I am very rigid about my eating, and I would not easily be able to break out of the patterns I have; which is good, in that it keeps me eating, but there is a long way to go to feel ‘free’.

I have not yet let go. I fear that to ‘let go’ would mean to be at a weight higher than many people who recover from eating disorders would ever consider. I fear that to ‘let go’ would to be at a weight I could not manage. More than anything, I guess I fear to ‘let go’ because I have clung onto my eating disorder for so long; it’s a monster. It is scary. It controls my life; but it also feels familiar, and safe.

But like the saying goes…

“The day came when the risk to remain tight in a bud was more painful than the risk it took to blossom.”

And I have run around the idea of letting go of societal standards, and eating disorder services goal weight ranges… and just…letting go. If being a higher BMI means I am happier and healthier, and free…I will do it. And I know I have said this before, but I know that there is every chance that right now is the time that I really will make those next steps to… to a life where my eating disorder has less control than it does now.

I am not a fan of the word ‘recovery’, so I do not want to say I am trying to move onto a full recovery. I am trying to be free, and happy, and accept myself as I am. I am not after full recovery and loving every inch of myself… just freedom, just to feel carefree…to go out with friends and eat a slice of cake if I want to, to not micro manage my weight like it is a full-time job… really, I just want to truly live.

It is Eating Disorder Awareness Week, and I guess this post is for the people who have overcome what many would see as the “worst”, but who actually, are still fighting a horrible, daily internal battle. This is me telling you that your body weight might be at a weight that medically is “healthy”, but that does not mean that your journey has ended; it does not mean you do not have behaviours that you still need to work on, or pounds that is is absolutely ok for you to gain.

This post is me telling you that if you are in this place, you are not alone, even though not as many people talk about this part as they do when you are acutely unwell or in early recovery. And I am here waving my own little banner for you, cheering you on, to do whatever it is you need to do next, albeit exercising less, heck quitting exercise… or challenging what you eat, gaining more weight than a professional once told you that you need to (because ya know, we are not robots; you cannot take 20 people of the same height and gender and expect them all to be the same weight). Whatever it is you need to do, I am here for you, and quietly encouraging you, as I encourage myself.

There is, in the end, the letting go.

 

 

 

 

 

 

The End Goal is Recovery, Right?

I have stopped using the word ‘recovery’. This means that the sentence ‘I am in recovery’ is no longer going to be coming out of my mouth, which at first seems quite negative. But it is not the same as saying ‘I am not in recovery’ (which I would not say any way, because that would still be using said word).

I first began questioning ‘recovery’ when I found out about ‘Recovery in the Bin‘ on Twitter, although this was some time ago. I agreed mostly with everything they talk about, although maybe not to the same extent that they do.

I’ve done some reading on the recovery narrative, and how it has been taken over by neoliberalism, and places pressure on the patient. It is like you have to be in recovery. You have to be getting better, and it seems a bit… demanding. There are plenty of physical illnesses where patients are not expected to fully recover, and yet the emphasis placed on recovery within mental health seems to demand that you do, that to be fully recovered is the end goal.

We all need end goals… or think we do. That we do X, Y and Z, and then we have achieved the goal and that is done. However, I am beginning to think that there does not need to be an end goal, or at least for me personally; I can only ever speak for myself.

I am not being negative, I am not saying that I will not ever be what many describe as ‘recovered’. I just think maybe I will not, and maybe that is ok. It does not mean I am going to spend my whole life struggling or being a victim, it just means that I have come to an understanding that I might always live with mental illness, and that living with mental illness… well, it is not the end of the world. I can still be happy, still get on with my life and still be me.

The pressure of the recovery narrative is, I think, harmful to me. The pressure some professionals place on recovery is harmful. People can be discharged or excluded from services for not getting better and I do not agree with this. Why can we not support people in managing, even if they stay where they are? And I know the answer to this. If someone is not going to fully recover, they might (MIGHT) always need some degree of support from health services = not exactly cheap or ideal for the NHS. Mental health services are thinking about your discharge as soon as you are in them, their goal is to get you better and get you out.

But what even is ‘better’? I get a bit sick of, and sceptical of, the wonderful recovery stories. I had anorexia, and to some extent you could say I do. I am not fully recovered. It does not control me any more, I am not underweight, I manage my eating to varying extents. I do not need treatment any more. But neither would I make a fantastic magazine story. I am less ‘Woman Had Anorexia, Nearly Dies and Now She Loves Her Body and Eats Whatever She Wants and is Magically Amazing and Living Life to the Full’ and more ‘Woman Had Anorexia, Now Manages it’.

Not such a great headline. Not going to attract much attention aka not what anyone wants to publish, or talk about. It just is not that exciting.

And yet I am happy, fine and content with it.

When you are ‘ill’ people will throw stories at you of people who had Anorexia and now they are better and that becomes your goal (or should, apparently). I just never found any of that very helpful. Hearing from, talking to people who had fully recovered… I just felt like I would have found it more helpful to hear from someone who still struggles, but manages. Someone who is still living with it, but is getting on with their life, and is healthy and happy despite it.

‘Recovery’. ‘Survivor’. ‘Warrior’. These words just do not help me, personally. You hear people describe people who fully recover as being strong. Does that mean those that do not are weak? If you have not made a full recovery, does that make you a failure?

The recovery narrative, while it can be inspiring and motivating, also can be damaging. It can also be taken on by mental health services in a way that is detrimental to patients, puts extreme pressure on them due to the expectations involved, and is heavily linked to the discharge of said patients. Get them in, recovered, and out.

Borderline Personality Disorder was not an NHS priority many years ago. Help did not really have to be provided, because people believed it was a disorder nobody could recover from, and if you cannot get better, why treat it? And then the paper was published… ‘Personality Disorder: No Longer a Diagnosis of Exclusion’ because people realised actually, you can get better. And that was fabulous that it was now a bigger priority and not a death sentence and yet at the exact same time… why does an illness need to be something that can be gotten rid of, why does someone need to be able to fully recover, in order to deserve help? We sure as hell do not treat physical illness like that.

And you know, things can get bettER. Some people do describe themselves as fully recovered, and one day that might happen for me. It just is not my priority any more. Aiming for ‘recovery’ helped me a lot because it felt like if I was not getting better, I was getting worse and I dreamt of being one day, finally ‘recovered’. It gave me hope, or that is what I thought.

But because life has not worked out the way that said dream was supposed to go, and I have not fully recovered… the narrative of recovery, that goal, became unhelpful. We can live with mental illness without that being a negative thing. We do not have to ‘beat it’ to be strong, successful or happy. If we do feel like we reach a place where we are fully better, fabulous. I am not knocking that or saying it is not possible.

But if we end up living our lives with some degree of mental illness, that probably fluctuates over time… becoming sometimes worse, sometimes better… I just think that is OK and the more I think about it, the stronger my distaste of that word, ‘recovery’, becomes.

I am Natalie. I have mental health problems and I am not fully recovered. I might never be fully recovered. It does not mean in ten years time I cannot be in a relationship or having kids, or finally having my dream career. I do not need to be fully recovered and symptom free in order to have, or to deserve those things. I do not need need to sit in front of an employer and be able to say ‘I had mental health problems’ and I do not need to be totally fine to manage a relationship or not scare off potential partners. I do not need to be mental illness free to be a good parent and I do not need to reach some end goal of a full recovery to look back on my life and be proud of it.