“Through stressful water to relief” – EDAW 2020

It’s coming to the end of Eating Disorders Awareness week and I’m taking the time to reflect on the past year, like I’ve tried to do many times before. I tried at a year past leaving hospital, and the new year, and every time I try to reflect, I have sometimes, but very often not a lot of positive to say. So this blog may be a little different.

Last year during EDAW, I posted a blog with this sentence at the start:
“This week is Eating Disorder Awareness Week. I don’t need an awareness week, I am so painfully, ridiculously, exhaustingly aware of my eating disorder every single day.”

And I was. I was exhausted. I was in pain. The way I was feeling felt ridiculous. I was constantly aware of all of those things.

And yet this year, even though I’m aware of my eating disorder, I’m aware of my strengths and skills as well.

I am aware that my body shape is different. It takes up more space than it ever has, or should I say it commands more space. It needs more space because it is filled with health and happiness and light. It is filled with so many things that it’s not been filled with for a long time – like hope, joy and life.

I am aware that with time, I have learnt to trust my body. It tells me what I need and when I need it. It tells me when I need rest, when I need food, when I need my weighted blanket. I am aware that my body tells me what I need physically and mentally. I know it is hard to listen all the time, but I know when I don’t listen, my body won’t function, mentally or physically, as it should.  

I am aware that wobbles happen. I am aware that a very wobbly wobble did happen quite recently and that it felt like it would never end but it did. I know now that it doesn’t matter if I can’t see an end in sight because I have to fight anyway. I know now that even if I can’t see it, there are people who can, who can guide me in the right direction, who have hope in me when I don’t have it in myself.

I am aware that there are so many things I have yet to learn, so many skills to acquire, so many strengths I will discover in time, but they’ll come. They’ll come just like the wobbles and the good days and the bad days. I know recovery is not the goal I am aiming towards, but the journey I’m taking. It is a decision I make every day when I wake up but it’s the best decision I have ever made, that I’m lucky enough to keep making.

I want to say recovery is possible – not just say it, shout it from the rooftops – but I won’t because the term recovery has a different meaning for everyone but I will say one day the good days will outnumber the bad days. One day, you’ll be able to swim through the ebbs and flows and not feel like you’re drowning at every turn. One day, you’ll be able to thank your body, trust it, cherish it. One day, you’ll be telling someone else “one day”.

And an unhappy new year

I had a blog planned out for this time of year. It was going to be called “A Merrier Christmas”, only it wasn’t. I had a blog planned out then anorexia happened.

Life has had an upheaval these past couple of months, and suddenly the only things I could control, the only things promising me control were food and exercise. It became all too easy to cut down a bit here, just do 5 more minutes there, so easy that I fell, have fallen, right back in the trap that has ensnared me before. I collapsed into the warm comforting arms of anorexia, only to be reminded that those arms, the ones that were outstretched promising happiness and safety, become the arms that hold the puppet strings. I have become, once again, a slave to anorexia, doing its every command, following every order, questioning if I even have a choice.

I honestly don’t know if this is a blip/wobble/shaky period, or if this is going to turn out like last time but I’m in a constant battle of what Daniela wants, the former, or what anorexia wants, the latter. I do know I’m scared but this time I’m not alone. I have wonderful friends, family, boyfriend, the most supportive neighbours.

The illness, the puppet master that tries so hard to keep me quiet, is at least defeated in one respect: this time I’m shouting. This time I’m honest and saying, things are hard, and I need help.

Shout for yourself. Shout for a chance of recovery, of a better life, of happiness. Shout like your life depends on it, because it very well might.

Sending love, light and happiness,

Daniela

An identity crisis or opportunity?

How do I identify myself? Am I the autistic anxious anorexic that I’ve been the past couple of years? Am I the depressed person I was all those years before?

As recovery becomes more tangible and concrete, what am I left with? Anorexia is all consuming. It has the ability to damage, and did for me, relationships, jobs, days, months, years, christmases, birthdays, happy days, almost everything. It was all my thoughts, all my days, all my relationships could possibly be. I was still Daniela, but I was Daniela with anorexia. I was still Daniela but most days it felt like 5% Daniela, 95% anorexia, a near lethal cocktail it turned out.

But now with 95% of my thoughts, my days, and my relationships gone, is this an identity crisis? I’m on the right medication, and I’m accessing the right support so I’m not Daniela with depression like I used to be where 95% of my thoughts were darkness and hopelessness. I’m not Daniela with anorexia where my thoughts were 95% trying to be in control and the same draining hopelessness and darkness and discomfort and panic. I’m still autistic Daniela and always will be, but that’s not a percentage, that’s just me.

So I guess I’m a sparkly little drink of 95% Daniela, 5% Anorexia, and a cocktail umbrella of anxiety. I’m 95% the things I choose to do and the things I get to think now I have the headspace to think them. I am 95% a sister, a daughter, a friend, a girlfriend, a neighbour, a kiln frog. I am 95% the people I get to be around, the job I get to work, the pets I get to pet. The anxiety still permeates everything but I am so much more me than I have been in years and it’s new and exciting and terrifying but I hope it gives you hope.

This isn’t to say anorexia makes you less of a person, or that it has to be your identity, or that your experience is the same as mine was, the damage it created, but it is to say, I promise, once the anorexia is gone, you’ll still be the wonderful person you have always been and are throughout. You’ll just have less bitter taste in your snazzy little cocktail self.

Sending love, light and happiness,

Daniela x

An awfulness of changes

Whether it be the anorexia or the autism, change is something that I’ve always struggled with. Changes in routine, physical changes, mental changes, changes in places, people, things, all of them each causing their own form of distress.

So that brings me to now when my life is full of good changes, a new job, new found confidence, a more at peace mind, but why do I still feel like burying my head in the ground like a confused ostrich? Why do I still want to control something in my life, something that won’t change, something like my food intake?

But you see this time I’m not. This time my ostrich neck is up with the sun of positive change in my eyes, with the anxiety and uncomfortableness that brings, with the mental pain. My default coping mechanism, my crutch of eating less, has changed.

Change is uncomfortable for us all, regardless of any diagnoses we may or may not have, but as terrifying and as unsettling it may be, it can be wonderful too. I don’t know the point of this blog. Maybe I just wrote it for me, maybe it’ll resonate with you, maybe there’s a small bit of hope in there for the both of us that change will always happen, but it’s possible to get through it in a healthy and happy way (or at least I’m trying to).

Sending love, light and happiness,

Daniela

A Moderately Happy Anniversary

I’m coming to the end of my second bottle of 180 chewable multivitamins so that must mean one thing: It’s been a year since I was discharged from hospital. This feels like New Year’s Day, with all the resolution making, the wondering where the year went, wondering what I’ve actually achieved, what happened to last year’s resolutions. It’s been 365 long exhausting days so I thought I would reflect and share with you all some of the things I’ve learnt in the past year.

Or at least that’s what I wrote the other night. I wanted to write this long uplifting blog but I keep getting stuck. What have I learnt? What have I actually even achieved in these 365 days? Well I survived them, some of them begrudgingly. I’ve existed some days but I’ve lived some too. I’ve had days where hope has felt lost, and days where I’ve realised it was just hidden by the black clouds of my malfunctioning mind.

This year has been filled with tears, steps backwards, falls and leaps backwards, arguments over food, arguments over inappropriate comments about food and weight and all things anorexia, confusion, fear, days hidden indoors, overwhelmed-ness, eating disorder behaviours, more tears. But it’s also been filled with 11 months of the most magical pup, 12 months of being home with the most beautiful, feisty, scratchy cat, so many ups and downs but ups and downs I have survived, 12 months of friendships old and new, 12 months of family support, 3 months of a relationship, steps forward, crawls and leaps forward, scrunchie making, entering back into a world I still seldom recognise but am getting to rebuild.  

I may not have made any great discoveries, or found any magical healing cures, but I’ve spent 365 days living and existing and hoping and learning every second of every day about how to make sense of this illness, this world, this me. I have spent 365 days out of hospital and don’t get me wrong, the world is still terrifying, confusing, ridiculous but I’m glad to be in it.  

Sending love, light and joy,
Daniela

Getting better, just not step by step

Trigger warning: Exercise

Anorexia takes me on many an adventure. These past few months, I’ve been living a childhood favourite. You see, anorexia and I have been going on a bear hunt. A swelteringly hot heat wave, well we’ll have to walk through it. Thunderstorms and torrential rain, yep walk through those too. The muddiest puddles, the nettle bushes, the longest grass, the blisters, the days of complete mental and physical exhaustion, the days where everything told me not to walk, well there I was and am, walking my set amount of time a day. Heck I’m even walking as I write this.

Now my avid couple of readers (hi mum) will know exactly what bear anorexia and I have been hunting for – control. I don’t need to tell you again that’s what I want more than anything, but is walking really giving me that? Am I walking towards a life full of control or a life where anorexia controls me? Now, don’t get too cocky, we could all answer that last one correctly.

But what’s the point of this blog? (Yes other than that massive moan about what my life looks like currently and my inability to change it). I guess number 1 is a small “it’s not a vanity thing, it’s a control thing” reminder, but number 2 is a reminder, for people with and without eating disorders, for you reading this, for me, that it’s okay to take a break. It’s okay to take that day, week, month, year off. It’s okay to say “you know what? I just don’t feel like it”. It’s okay to listen to your body or mind that you need that time off. And if you’re struggling to stop despite those things, it’s okay to seek help. Now pardon my hypocrisy for 10 seconds to consider that we might all just deserve a life free of compulsive thoughts about exercise.

Sending love, light and happiness,

Daniela

Dating Anorexia

I’m in a fairly new relationship, but I’m still in my old one – an affair do you say? Sort of. I’m cheating on anorexia with my boyfriend.

Every time I say no to the food rules, that I say I want to enjoy a meal with him rather than eat like I normally do, every time I say I’ll walk 10 minutes less, that I want to spend more time with him rather than walking, I’m cheating on anorexia. I’m cheating on the thing trying its hardest to kill me. I’m cheating on the thing trying to ruin my current relationships, friends, romantic, family.

I’m learning to rebel, to do the things that make me feel like I’m a bad person, to do the things that will save my life. Am I good at those things? No. Am I trying to be? Most definitely. I’m learning to be Daniela again, rather than the “Daniela and Anorexia” couple. I’m learning to be a care free Daniela, a restful, calm, kind Daniela who can think about something other than food or exercise, a Daniela who is in friendships and family-ships (yes that’s a word now)(maybe it isn’t but shh) and a relationship. I’m learning to be a Daniela without anorexia – I don’t know what she looks like yet, not the same as I did before and certainly not the same as I do now, but she’s waiting for me. She’ll be here not tomorrow or the next day, but she’s coming. She’s going to be tired and bruised from the fight that got her there but she’ll be alive and happy and lucky to have all the wonderful people in her life that she does.

Sending love, light and joy,

A Daniela who’s a work in progress

To the girl in the orange jacket…

The girl in the orange jacket walks past me a lot, and I don’t know if she suffers in the same way I do but I’ve assumed she does, so in some ways she’s fictional and in some ways she’s a mirror and in a lot of ways my assumptions suggest more about me than they ever will about her. But anyway, I wrote her a letter…

To the girl in the orange jacket,

I know you, well I don’t know you but I’ve walked past you enough times. You see I know you because I was you, and most days I still am you.

I was the one wearing 2 pairs of leggings, 2 jumpers and a coat. I was the one avoiding eye contact while I did the things that probably weren’t good for me, that definitely weren’t good for me, the things that definitely were bad for me. I had my music on, just like you, pretending, hoping, assuring that no one in the world could reach me. I am the one who looked at you with pity, with fear, with jealousy. I am the one who looked at you thinking “but she must feel so in control”. I am the one who maybe some days realises you probably aren’t.

So to the girl in the orange jacket, and all the others suffering, living, surviving, I know you. I’m with you. I’m as scared, as tired, as alone as you, and I wish I could say, hold on, keep faith, have hope but I honestly don’t know. All I will say is that hidden suffering, the fear, the mental exhaustion, the loneliness, is not unique to you. You may feel alone but I promise you, you are not.

Sending love, happiness and peace,

Daniela x

‘Tis not the season for body image issues

Last year in summer, in the absolutely baking heat (okay so I get hot easily), every time I went on leave from hospital, I lived in a poncho, and I’m not talking a waterproof one, I’m talking a thick woven poncho. Why? Because I thought it hid me. I thought no one could see my weight when I was wearing a massive poncho. I don’t however think I was quite as inconspicuous as I thought walking round Richmond Park in the height of summer in the stereotypical winter attire of an alpaca farmer with my arms out trying to get a breeze through. 

While others lived in shorts and T-shirt’s, in bikinis, I lived in my poncho and eventually when I gained a bit more confidence, a men’s size XXXL jumper. I was absolutely terrified of people seeing my body size. 

Anorexia for me had started with a way of getting control, but as my brain became more malnourished, so did my ability to see sense, to see my size accurately, to see that no matter my size, I had no one staring at me, no one judging me (in an ideal world), no one thinking the same about my body as I did. 

So what about this summer? Well the poncho has retired. Most days the XXL waterproof jacket remains, but a healthy weight has started to bring clarity, a kindness towards myself, a peace with my body. But for me and for so many, summer comes with struggles. So be kind, be patient, be nonjudgemental.

Sending love, light and joy, 
Daniela x

The A Word

No, I’m not talking about the tv programme, or that word you shout when someone cuts you off while driving. I’m not even talking about anorexia, a topic that’s come up on here before. I’m talking about autism. 

It’s not something I often talk about, not to friends or family, and the vast majority of people in my life don’t know I was diagnosed last year. In a film I watched about Temple Grandin, she says autistic people are “different but not less”, and it’s something I remind myself often. I see the world, the patterns, the rules, the chaos, the pain, the people. Sometimes I feel like I’m seeing more than neurotypical people, sometimes maybe less, but I know autism doesn’t make me any less of a person. The difficulties I face every day, the ones I so seldom mention, the ones I often hide, don’t mean I am worth any less. But why with all this hiding, with the quiet challenges I face, why talk about it now? 

There’s a quite striking statistic that 1 in 5 women with anorexia have autism as well, and autism is underdiagnosed in women, leading to years of misdiagnosis or denial of the help they (or we) need. I’ve lived with autism my whole life, but anorexia is still fairly new to me. Rather than the stereotypical body image symptoms, for me, at first, food just seemed an easy way to control my life when my routine changed – I couldn’t stop the world changing around me, the days muddling up. I thought I could stop one part of the chaos, but I was wrong. Anorexia is chaos. Hospital was chaos. Life was chaos.

Now? Well I’m still autistic if that’s what you were wondering, and I still have anorexia, just like so many undiagnosed others, but we all have a place to raise awareness of how often the two come together. It took years of treatment before the possibility of autism was mentioned in my care, and it took me being hospitalised to finally get a diagnosis, but with greater awareness, diagnosis can be earlier, and more importantly so can the access to the correct support.