Christmas and Mental Illness: Anorexia Nervosa

Christmas is just two weeks away, which does not sound that long. I can bet that those living with Anorexia Nervosa have been thinking about the festivities and food for weeks, if not months.

I do not do that any more. The only conversations I have so far held around  the combination of food and Christmas include:

Mum: I’ve got a turkey

Me: Is it big?

Mum: Yes

Me: But I mean is it huge? Is it big enough for me? Because you know I love turkey.

and:

Mum: (some sort of talk about money and presents etc.)

Me: As long as you have a huge turkey, 20 kilos of Brussels sprouts and a tub of both Celebrations and Miniature Heroes, I don’t care.

These are not the kind of conversations we would have been having years ago.

I have to say, Christmas always seemed to fall in with being around the time of year where I was actively trying to “beat” my eating disorder, at least in the latter years. Yet even so, it was always a terrifying time of year. I would be planning it way in advance; what I would eat, how I could eat less prior to the days surrounding Christmas to compensate for eating extra and how I was going to manage other peoples attempts at making me eat more.

I remember agonising over it, even when well into recovery. I would decide to push myself to have one dessert over the Christmas period, and then argue with myself about when this would be. Would I have it at home with my Mum? Or at my Grandparents? If I could only have dessert once, I was desperate to pick the right day, the right meal, the right dessert. And should I pick the dessert I want? Or should I pick the one that my eating disorder would berate me least for? I would flick between “F**k this I am eating whatever the hell I want” to “Ok, maybe this year I will just have a little bit of dinner and next year I will have whatever I want.”

During the earlier years of my eating disorder I remember making sure I was sat next to my Mum at the table of my Grandparents, clinging to her side, needing her to help me battle off different family members trying to force extra food my way.

I remember hovering around the kitchen when my Mum was cooking our home Christmas dinner, cooking vegetables differently for me, and keeping an eye on that bottle of oil she was so freely splashing all over the place. I was a control freak… but gradually over the years I have backed off more and more. My Mum has gained her place in the kitchen back, and no longer has to worry about me parading in and having a fit over what she is doing. I know she loves it, and I love letting her.

I enjoy Christmas dinner now, and no longer do the difficulties surrounding food take over the whole thing. I now get to enjoy watching TV, Christmas movies, sharing, opening presents, giving presents, pulling silly faces, and going for a nice walk because I want to (not because I need to burn calories), or not going for a walk because my pyjamas and the warmth are much more inviting.

My eating disorder was never about food, and Christmas is not really about food neither. And yet food dominates both of those things. You feel guilty for letting food ruin Christmas when you know that it should be so much more than that, and yet the fear and anxiety takes over. More people are around than usual, extended family see you for the first time in a while, and their reaction to the fact you have lost two and a half stone is to keep passing you chocolates, offer you another plate of turkey and sit dessert in front of you even when you have politely declined and your mother has given them the look of death.

You have to deal with the usual guilt of life with an eating disorder, combined with the guilt of making Christmas harder for the rest of the people around you. You feel guilty that how Christmas is affecting you, means that you are behaving differently, which upsets others. You feel guilty that you cannot tuck into your Grandma’s usual Christmas trifle that for 14 years was the highlight of your Christmas. Your Grandma walking in with it, her prize trifle, prize only because you have always loved it so much… and you feel this dreadful sense of guilt, of letting her down, because this year rather than jumping out of your seat for the first serving like you always have, you put your head down and hope nobody looks your way.

I am so glad that I am where I am with my history of Anorexia. I do not claim to be fully and magically “recovered”, and I struggle still on a daily basis. That being said, Christmas does not terrify me. In fact, Christmas is now a time for me to really stick two fingers up at Anorexia and say “you don’t have me any more.” Any guilt I feel, I can fight, strongly. If any disordered thoughts pop up, I hear them for a second and shake my head. “No thank you, you are not welcome here” and then I pop an extra chocolate in my gob for good measure.

But this is not the case for everyone. I wish I could be there with anyone who struggles with their eating disorder over the festive period. I know how hard it is, I truly do. I know how much you long for the year when you do not have this intense anxiety and fear overwhelming you and taking away all the happiness of Christmas from you.

But I can also tell you it will not always be this way. I have watched myself find the Christmas period easier and easier over the last ten years since I was diagnosed with Anorexia. I never thought I would get where I am today, but here I am. I used to think I would be the one who never gets “better”, but none of us are exceptions; we can all get to this place. I hope that in another ten years time, I am even further into life without Anorexia than I am now, and that it can get even better still. Sometimes I doubt that, but then, I doubted I could get where I am now too. Life is full of surprises.

It happens in baby steps, like most things. I hated the initial years in recovery where I pushed myself, but “pushing myself” was still very limiting. I pushed myself to have one chocolate out of the tin. I pushed myself to have one form of potato. And it was SO frustrating. I wanted to just stop caring. I wanted to have mashed potato and roast potatoes, half the tin of chocolates, and dessert twice if I so pleased. I spent so much time agonising over all of my fears and selecting THE one I would decide to challenge, while wishing I could challenge them all.

Even when I was “in recovery” (I hate that word), and even now as I am, I can only push myself so far. But I promise you, year by year, what you can manage grows. And more than anything else, as the eating disorder slowly loosens its grip, you slowly gain back all of the things you so desperately wish you could focus on, rather than letting food dominate the whole period.

I know the guilt for wanting Christmas to be over, purely because of your fear of food, is horrible. I know it gnaws away at you. You think that you are “bad” because rather than looking forward to time with family, giving gifts, and doing all of the festive things Christmas involves…all you can focus on is food, how to avoid it, and how long it is till it is all over.

Do not feel guilty. I know that is easy for me to say, but you are not a “bad” person for the way your eating disorder takes over everything. You are a strong person for taking each step you take, however big or small. And sometimes you are strong even when you cannot take any steps at all. None of this is your fault, and you are never alone. And nothing is permanent.

Honestly, I wish I could go back to 15 year old Natalie and shake her. Tell her that everything her eating disorder is telling her is lies. I want to scream at her “you are living on a bed of lies.” No, eating extra for a few days is not going to do anything, and no, even if it did make you gain a couple of pounds, it does not matter. Yes, you deserve to enjoy food. I want to hug her and tell her that one day she is going to look back on where she is and see the strength she had within her just to survive.

You are strong for surviving. Christmas might involve arguments, and tears, and anxiety. It will be difficult, frustrating and exhausting. But none of this takes away from the strong person that I know is within you.

And I truly hope that at least once, you laugh without thinking, and that if you need someone to talk to, you are not afraid to reach out. Christmas can be lonely, but you are not alone in feeling that way. We are all here.

Update 16/11/17

When I created this new blog, I decided to eliminate giving personal information about what is going on in my life; I felt it was “better” for myself, and my future. Turns out I miss it, a bit, and actually if I turn my blog into something that is entirely factual and not personal, it sort of feels like I lose something. I guess deciding to totally eliminate it is a pretty black and white approach, and there can be a middle ground where I can say so much, without saying more than I really feel comfortable with.

(So here goes…)

Things are very up and down. Being in hospital was really just one very small step in dealing with what happened, and while I gained and progressed a lot in that time, really a lot of the hard work happens when you come out of hospital. It is easy to sit in hospital and think when you are out, life is going to fall together. Towards the very end of my time on a section I think I experienced a bit of a honeymoon stage.

We knew I was coming towards the end of my admission, and so myself and the staff became a little reflective on the progress I had made from the start of my admission to the end. I was praised for “taking control”, reducing my risky behaviours and learning to use my voice. I was praised for no longer sitting in silence and for communicating with professionals better. And that was nice. It was. But I look back now and feel a bit like a dog being praised for sitting. I feel in some ways like I was putting on an act to some extent, to please people. To look like I was “taking responsibility” for myself, like falling apart had been a choice, a “wrong” thing, and something I had inflicted on myself. It felt a lot like professionals were happy with me for not appearing overly “ill” or self-destructive. Happy with me like if I was still being destructive, they would not be happy. That if I was still being destructive, they would see me as being “wrong”. Almost…misbhehaving, being “difficult”. A choice.

The honeymoon stage consisted of certain thoughts. I thought I was not going to need much, if any, outpatient support. I thought I was going to be able to work. I thought I was going to suddenly feel functional, be able to socialise more, and just…not go back to where I was. And I can do that, for very short periods of time. Note: short periods of time. It feels like I have a bad period, pick myself up, but then I can only sustain that for a brief while, before it gets exhausting and I cannot force myself to be ok any more.

There have been a lot of different things going on. I was admitted for a short admission, which I made incredibly short by asking to leave the very next day. Before that I was nearly  admitted once, and since then I have nearly been admitted again. My friend passed away. I do not know what words to give it that feel “best”. She committed suicide. She died from mental illness. She killed herself. Life killed her. Her past killed her. I mean people say they do not like the use of the word “committed” and I used to get that. I used to agree, and to an extent I still do. And at the exact same time, now I have experienced that loss, I honestly do not care what words are used. She is dead. You can dress it up however you like, but it is not going to change the situation. You can skirt around saying how she died, but it is not going to make it any more ok.

It is not going to bring her back. Nothing is going to bring her back.

Other things: my medication has been all over. Without going through it all, I am basically still on quetiapine (I have been for years), the lorazepam I started taking (after being threatened with being restrained and injected) in hospital is now being changed to diazepam so that it is longer lasting, and duloxetine, which I start about six weeks ago, has been stopped and I am going to see a different consultant to my usual one to discuss what may be more suitable. I also had my prescriptions stopped from being monthly pretty soon after my discharge, to weekly, for reasons you can probably guess. I was made to get an ECG due to, lets say, medication misuse, and there was this discussion of changing ALL of my medication because of an abnormality in my PR interval (basically something wrong with my heart). The plus side is, my self-harm is really quite stable for the first time in many years. The worst side of that is hard to discuss. I ended up in some very similar situations/identical situations, to when I was sectioned. The plus side of that is, the mental health team I am under were, and still are, incredible.

More things: I had some job interviews. The one I was offered and accepted, it was the best job interview of my life (not that I have had many). It was a number of hours with different stages (individual interview, maths/written test, group test) and I honestly enjoyed the whole thing. Sadly I had to later turn it down. In the back of my head I was thinking “Natalie, your doctor signed you as not fit to work for six months and would probably extend that considerably”, but I wanted to work so bad. There is a lot of pressure in society to work and be “functional”. Dealing with that, and the shame, is a whole other post – I am volunteering though, gradually picking up more roles.

I regained contact with my father. I had my first phone conversation with my Grandma this week. My eating is INCREDIBLY messy, although not insufficient (I have gained weight), but it has a lot to do with my anxiety rather than my past history of anorexia…so yes, a lot going on.

I have good days, I really do. Just an awful lot of bad days. Not showering. Not wanting to move. Living off cereal. Knocking myself out with medication. Avoiding things. Staring into space. Losing time. I mean god praise the nurse that comes to see me; I would not want to come and see me 80% of the time. Sometimes I think “jeeeez Natalie, stop being so bloody depressing.” I just turn into a zombie and I cannot see any light.

But then I do see the light sometimes. I guess this was never going to be easy. The year leading up to being sectioned was horrific, the events surrounding being sectioned were horrific, being in hospital was horrific (although necessary on reflection), and being discharged back into “the community” (that phrase makes me cringe), was never going to be easy, even if I thought it was.

 

Your Personality is Disordered

The diagnosis of Borderline Personality Disorder (or as some prefer, Emotionally Unstable Personality Disorder’) appears to be a much debated issue at current. The diagnosis of personality disorder has been a topical issue for a long time, but with the upcoming ICD-11, this has increased

The idea that changing the title of the disorder would change the treatment of those labelled with this illness is questionable to myself; how can the ‘new’ diagnosis not then become stigmatised itself? It seems likely that the public, and more to the point professionals, would see any move to another diagnosis as “oh that is now basically people that had BPD” and the same narratives would develop.

As someone diagnosed with BPD I do not struggle that much with the title. The use of the word ‘personality’ is what I believe is the biggest issue that people have; that to deem a persons personality as disordered is not a true reflection of the issue, and being frank, insultive. I think that is a fair comment, and many believe your personality is something that does not change. The problem here lies in that. If your personality cannot change, does that mean someone with BPD cannot get better?

But here are my issues with that: Personality can change, surely, at least to some extent. And why is there this fixation on being able to get “better”, to be able to “recover?” Personality disorders used to be seen as pretty untreatable, and therefore why should the NHS plug money into treating something that cannot be cured? Well, actually, they should. Some people have problems that do not get better, but that does not mean that they should not be supported in managing their condition.

The fact is though, contrary to that point, that people with BPD can and do get better. There is plenty of research to back this up, particularly in the area of DBT. It just so happens that the NHS often does not provide this therapy.

Back to the use of the word ‘personality’. I have to go against what I said to some extent; it does affect me. When I have been in A&E for self-harm, or even somewhere entirely unrelated and I am asked what my diagnosis is, or why I am on the medication I am on, I used to pretend I did not have a diagnosis. These days I say it, but the words come out of my mouth painfully, and I feel sick to my stomach. In my head I am concerned about what the person in front of me is thinking when they hear those words. They probably do not know very much, and it is quite likely that they know the stigmatising beliefs that exist surrounding the disorder.

Is my personality disordered? If you asked me to describe my personality I would use words such as ‘caring’, ‘sarcastic’, ‘humorous’ and ‘weird’. I would not for one second think of my mental health. I would not say ‘unstable’, ‘destructive’ or ‘mentally ill’. It would not cross my mind. My issues are less to do with my personality and much more to do with my mood and emotions. In some senses that makes the label ‘Emotionally Unstable’ seem more fitting, but that also makes you sound like you are overly hormonal and a mess (being honest). I once read about the use of the term ‘Emotional Dysregulation Disorder’. I genuinely believe that is more fitting. Living with BPD looks and feels a lot like someone who experiences Bipolar, except your mood changes unbelievably fast, medication is much less useful and you are more likely to have a history of trauma.

I do believe that ‘Borderline Personality Disorder’ and ‘Emotionally Unstable Personality Disorder’ carry a heavy amount of stigma. I do believe that there are better names, and I do believe that issues with personality are not at the core of this illness. But is the name the issue? No, not really. I can get over the name. I just cannot get over the responses it invites. The issue here is the way in which people living with these types of issues are almost blamed for the way they are. Not by all, but by many.

There are many problems within this; far too many to discuss here and now, but they lay in the belief that people with BPD, particularly those who self-harm, are attention seekers. That they just need to sort themselves out, like acting the way they do is a choice. I think to some extent, because it can be difficult to treat, it scares professionals, and it becomes easier to blame the patient, again because of this fixation on getting better.

What we need is a better understanding of the illness, irrespective of the name it is given. I personally feel as though the fixation on the name takes away from the real problem. Label me however you want. If BPD is how professionals can understand and group together my symptoms, so be it. But please try to begin to understand that this set of symptoms comes in many different forms and combinations, that each person is an individual, and that often people with BPD have found themselves where they are after years of trauma and/or abuse. Trauma and abuse that they suffered as children; children who never got the help that they needed. Yes, we need a lot of help. Yes, it takes a lot of time. But that is because of how ingrained our problems have become, for no fault of our own.

We know you struggle to understand, and heck most of the time we struggle to understand ourselves. But slowly, in time, you can help us find our way. No matter how we are presenting, we do not want this at all. However hard to manage we can be for you, it is no way near as hard as it is for us.

 

The Gaps Between the Seconds.

I was not going to write anything very personal on here. Yet here we are. How could I not?

My friend passed away. I keep saying “passed away” because it sounds less horrible, but I hate those two words. She died. After years of struggling with Anorexia and BPD, she died.

I have never lost anyone really close to me. I keep being told how I am feeling is “normal”. Half the time I do not know what I am feeling, and banging on about me feels selfish. I am not the dead one. I am not her family. This is not about me.

And yet here I am making it all about me. The hardest reaction I have had to face is this feeling of “I wish it was me”. I hate myself for that. I know a lot of people feel like that when someone dies, but the reasons I feel it are probably not “normal”. I am conflicted between two parts of me; this one that wants to be gone too, and the other that thinks that surely this should make me want to fight harder than ever? And it does. I want to be here for all of the other people who I know who need me; I do not want anyone to ever feel alone. But I cannot make that part big enough right now.

I do have moments where I “forget” what has happened, but that in itself makes the guilt stronger, and when it hits me again, it feels worse than ever. It is like finding out all over again. My heart sinks, my stomach flips, my shoulders feel heavy and I run around those same thoughts again; maybe it isn’t true, it cannot be true. It is true.

I remember her in the time between. What is that? It is the seconds between the seconds. It is the quick pauses in a conversation where I was distracted but then it comes back. Time goes slow. I remember her when I wake up, I remember her when I listen to certain songs. I remember her when I am walking and the sun is setting, and another day is over.

I took a while to cry. The first time I really cried was when my mental health nurse came to see me. But I did have a two second cry the morning after I found out. A two second cry within those first days of utter numbness. I left the house that next morning, and I walked past another person. Maybe a man, I cannot remember. Two things crossed my mind. One, my friend is not alive. She is not walking down a street where she lives. She is not breathing like this man, she is not existing like this man. Two, the rest of the world is carrying on. Most of the world do not even know. I wanted to scream. I wanted everyone to know. I wanted everyone to be thinking of her. How can the world be carrying on when something like this has happened? But the truth is something like this happens every day, multiple times per day. People kill themselves, and they fade away into a statistic.

The people left behind are left with feelings that you cannot put into words, and as someone who has felt very similarly to my friend, trying to work out how you feel becomes even more complex.

She messaged me the day before, asking about my new job. I was struggling and I did not want to think about starting work, so I did not reply until the next day. I replied 43 minutes after she died. I cannot help but think that her message could have led to a conversation where I could have “saved” her. But then, maybe, if she could come back for five minutes, and she was given the choice of whether to do it again…maybe she would. And maybe we have to respect that, as much as nobody wants to say it.

But then again, maybe she would not. Maybe she would be sat at home right now with her two children and her husband, laughing.

Goodbye Student Life

I have started a new blog, and for a number of reasons.

My old URL was based on being a student, and as of Thursday my dissertation will be handed in, and as of the 29th Sept, I will no longer be a student. In January I will graduate with an MA!

However, this is not the only reason. A fresh start feels appropriate for lots of reasons. You know sometimes life feels like it is passing through stages? Well, I feel like I am entering a new one. I am moving into a new house this month, with new people (and a chihuahua!), all of my support is changing, and I am looking for a new job. I am joining a new gym, applying for new volunteering roles and I have been discharged from hospital.

I would not want to repeat the last few months, but I honestly think it was something that I had to go through. I feel actually better and actually different, as opposed to pretending so. I do not think I can go so far as saying I am glad I was sectioned onto a section 2, and then a 3, because well, ‘glad’ is not the word. I was definitely not glad at the time; I tried to get out by kicking the doors down at the 136 suite, absolutely convinced I was strong enough, ignoring their comments that it was never going to happen and that the door opened the other way. I was not ‘glad’. When they moved me to the section 3 I was not glad neither; I was put onto it, then moved straight to A&E for treatment on the day I was expecting total discharge. But…the time on the section 3 was the time when I actually began to get “properly” better. I wouldn’t take it back.

Any way, a new blog feels fitting.

I struggled to select a URL, selected this one, paid to have it for a year, and then panicked. ‘A Good Kinda Crazy’ suggests that there is a bad kind of crazy. I do not want to be suggesting that. And I know some people are very anti the use of words like ‘crazy’. I am not, but I still appreciate that some people are. For me I have always been described as weird and crazy. I have always been the hyper, silly, loud, chatty one. I have always been one for being a bit out there. For me being ‘crazy’ is a good thing. I feel like the ‘crazier’ I am, the more ‘me’ I am. I think that using words like ‘crazy’ and ‘mad’ can be problematic, depending on the context and intent, but I also think we put too much power into words. What we as a society learn to connote with certain words is the issue, rather than the words themselves.

Of course, I never want anyone to be offended by my use of language. Not for a second. We are all entitled to our own opinions and feelings around things, but despite the fact I have mental health problems, my use of the word ‘crazy’ has absolutely nothing to do with that. My ‘crazy’ is me being me; silly, sometimes lacking common sense, still being a child at heart, and just being happy. Being me.