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.

 

 

 

 

 

 

Advertisements

Christmas and Mental Illness: Family

My family situation has changed a lot over the past six years. When my parents were together we spent either Christmas Day or Boxing Day at home, and then the other day at my Dad’s parents. The last years of life being this were quite difficult for me because of my anorexia, and I relied quite a lot on my Mum. All year round I tried to manage on my own, but once faced with Christmas dinner and extended family, I needed her. She would stop people trying to force food onto my plate and help me to cope.

When my parents separated we continued to do this, except obviously without my Mum, and then my Dad remarried (to the loveliest person in the world) and so she would go with us; one day at home with Mum and her partner, one day at my Grandparents with Dad and his wife. It was different, and hard in some parts, but it was also nice.

However shortly after Christmas 2015 we stopped having contact with my Dad, and consequently his family. Last year was the first Christmas not going to my Grandparents, it was the first year of going home from university and my sister having her own place, so I stayed at hers, and the first year I was really struggling and under the crisis team where I live now.

When I went home I was experiencing really difficult thoughts, but I was managing them by delaying the idea of acting upon them. I thought “I will see how I feel once I go back to university in January.” I thought we were all managing quite well. On Christmas Eve my sister and I both cried, and Mum cried because we cried, and we worked through it together. We did not really talk about the absence of my Dad because it was too difficult, but we were there for each other.

Then a few days after Christmas my sister and I had an argument like we have never had before. I think everything just got too much for us both, and due to us both having mental health problems we just could not manage it. The argument turned violent on both our parts, which has never happened before and has never happened since. The police were called and we were both taken to A&E; myself because I had broken my big toe and my foot was also badly cut, and my sister because she had hurt her own head after she chucked me out of her house.

Rather than staying at home for another week and getting the coach I had booked back, I booked a coach for the next morning. I came back to university early, with nobody else around. I had all of the medication I had not been taking for the previous three months and on the 30th, I took them all.

I do not remember anything. I woke up on the 1st or the 2nd with a catheter in. I was distraught. I was really distressed about the fact I had no clue what had happened, how I had got there, how I had behaved, and that I had had medical treatment that I was oblivious to. I got up and tried to walk, and my legs kept collapsing and I kept falling to the floor. I wanted to get out of the hospital and yet there was no way I was going very far.

I cannot really remember how I felt. I had been planning it before going home, but then after what happened at home I just… I knew I was going to do it. I came back to university and knew I was going to be alone for the New Year and I felt so, so alone. I have never felt so alone. I think what pushed me from wanting to do it, to doing it, was probably feeling like I had nobody to turn to. Even if I had wanted to seek help, even if I had felt brave enough to, I would not have felt like there was anyone. Not family, not friends and not professionals.

I am really anxious about New Year this year and I feel like I will probably cry a lot.

But, things are different. I am doing better. I pick myself up so quickly from blips. I have really good support. I still have not seen my Dad, but on Christmas Eve I am going to. New Year… I will celebrate it, as hard as it is to feel like doing so at all.

The thing about family when you have mental health problems, and especially when they do too, is that when you are able to support each other (which we do most of the time), it works really well. It can save you, it can keep you going and you can feel like you really are in it together. My sister once told me that I am like oxygen to her and that she probably would not be alive if it was not for me. We call ourselves the three musketeers; me, my sister and my mum.

But the problem is, when something goes wrong, when you are to the point where you are no longer able to support each other for whatever reasons, it can become really difficult. Families generally speaking argue at Christmas (lets be honest). But it gets really magnified. Christmas is such a wonderful time, but when your family has these kind of issues going on, it is also really hard. You try and be positive about it. I always think “OK, so my family situation is different and a bit messy but I am going to enjoy it with the people I do have and despite the mess”, and you try so, so hard to do that.

I am extremely lucky with the family I do have. We have a small Christmas. We do not make it into a big deal. We focus on spending time with each other and finding our own little bits of happiness within it, and I love that. BUT, that does not stop the things that hurt from hurting. You try and ignore those bits, because you want to make the most of what you do have… but sometimes trying to ignore that and push it away is harmful.

And even though I know this, I still know I am going to want to ignore those bits. I am going to be 100% happy, wonderful Natalie and I am not going to let myself get upset. I know I will struggle coming back to where I live. For the first time ever I am not in denial about how difficult I find coming back. But I feel like when I come back this year I have the right support. I will be able to vent a bit, get upset… or whatever else I am feeling.

It is really important to try and have someone around who can help you. I could not let many people help me when I was ill with my eating disorder, but I had my Mum and I let her help at Christmas when lots of family were around who thought that the best thing they could do was try force dessert down my throat even when I said “No thank you.”

It is difficult to express to someone any negative feelings you have, especially at Christmas because you do not want to bring the mood down… but it is important to have someone. It could be one family member, or a friend. Just someone. You might never have let them in before, but it could help to tell them even just a little bit; tell them that you might struggle. You never have to tell them everything, you do not have to tell anyone everything, but saying just something might help you. And there are lots of other ways to get support. A lot of mental health services will be shut, but you can make sure you get a bit of support before and after, and there are lots of helplines that will be open.

I have never called a helpline, so I know how much people can feel like that is not what they want to do. But at this time of the year when things can be very hard and other support is more limited, I think it becomes an even more important option for some. I mean, what is the harm in giving it a go?

I think the biggest thing I have learnt is that if you do cry on Christmas Day, as horrible as it feels, as much as you just want to be happy because you feel like you should be, it’s OK. You can actually be sad and cry, and also be happy and enjoy things.

Families are complicated at the best of times. Mental illness is equally complicated and difficult. The two combined at the time of year when it feels like you should be nothing but festive and cheery… it is OK to struggle. There is nothing wrong with it, and I can promise you that you are definitely, a thousand percent, not alone.

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.