My train station of thought

If any of you read my last blog, you’ll know things are going quite well at the moment. Things in terms of my mood, my eating disorder, and generally things are going quite well, but I came to a big realisation in the middle of Waterloo station on a busy Friday night. I came to the realisation that even when depression has left me, when anorexia has loosened its tight grasp on me, when life is ticking over in the right direction, I’m still going to be autistic.

Now to some of you this might sound glaringly obvious, and some of you, those who believe in a “cure”, well honestly just leave my blog please, but to me, it was a reminder. It was something I knew, something I have accepted but something that I was reminded of quite starkly that night.

I got through Waterloo station, and had the biggest sensory overload I had had in a long while. You see I never used to know what to call them – they were just the tears after laserquest or the malfunctioning after the UV lights in the bowling alley and the loud restaurant. But this time I knew exactly what to call it but not how to prevent the crying and hyperventilating for the three quarters of an hour walk I then took.

I know being autistic means that I’m always going to struggle with unexpected noises and busy places, that I’m always going to be one step behind when understanding a facial expression (that is if I’m forcing myself to make eye contact), that I’m going to be lost when it comes to abstract concepts like friendship and trust but I know being autistic makes me focused and hardworking, makes me careful and kind, makes me able to understand others emotions in ways that other people can’t. I know being autistic means I’m not like everyone else but thank goodness I’m not. I’m Daniela. I’m Daniela who loved all things maths, so much so she’s got a maths tattoo. I’m Daniela who cares so much about getting it wrong that she can’t make decisions. I’m Daniela who wants to be able to communicate with everybody but really wants to be alone. I’m Daniela who believes everyone deserves a voice that people can hear or understand. I’m Daniela who is autistic and proud to be.

So the point of this blog – well it’s to remind you that autism doesn’t go anywhere. It doesn’t change or get better. It doesn’t disappear with therapy or medication, but it can be helped with by you. You can be more understanding and considerate. You can learn how to understand how an autistic person understands the world, how they understand you and how they understand themselves. You can learn what makes them brilliant.

“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