Autistic love

I wanted to write something about being autistic, something that’s applicable to my life right now, something that felt pertinent to share.

I’ve been through so many changes recently and the change in routine has rocked the boat but I don’t think that’s something I’ll talk about today. I want to write about societal norms, being autistic and love.

I’ve been through so many stages of my relationship with relationships. I never wanted to go to Uni so I told everyone I was going to get married and have 3 kids before the age of 28. I then left school, realised that wasn’t what I wanted and thought marriage only made sense to make things financially simpler. I’m now engaged. So as you can see, things change.

There’s so many misconceptions about autistic people – one of them being that we don’t want to or try to fit in, or abide by societal norms, but I did. I did because I wanted to fit in and why? Well I wanted to fit in because I knew that would mean people would stop making fun of me. So in my head I was set on fitting in in the only way that didn’t equal having to go to Uni or getting a job straight away, something my mental health didn’t allow: I was going to be a housewife.

There’s also a misconception that autistic people want to be alone. I’ve always struggled with abstract concepts. What is a friend? What is trust? What is love? (Go on, try answer any of those – I can’t). I still don’t know, but I know my life is better with my partner in than without, it’s better with my lovely friends in than without, it’s better with those that I “trust” than without. I like being alone some of the time, maybe a lot of the time, but I still enjoy being with the people I love.

I guess getting married is still fitting in to societal norms but I get to marry my favourite person, and sure it’s easier for joint accounts and what not (I think), but it also just feels like the right thing to do. I’m not the girl I was in school. I’m not trying to fit in to survive. I don’t need to fit in to survive anymore. My diagnosis was the start of a journey of self acceptance, and I am just an autistic girl, in love, whatever the heck that means, and though I fit in, I’m also now happy to stand out.

The war on people with eating disorders

The war on obesity? The things filling our news pages, our twitter feeds, our government messages at the moment.

I could go into the complexity of obesity, but honestly I don’t know enough about it (seemingly neither do the government). I could go into the reasons why people become obese rather than the implicated and outright messages that it’s somehow laziness or over indulgence. But I want to write rather about the war that people with eating disorders face every day, but especially in this time of judgement of weight gain and having body fat.

I would say it’s just this time, but we live in a society that prioritises thinness over health. We have to face messages that seem to reinforce the messages that our brain tell us, that somehow putting on weight is always a negative thing, that the right to eat should be earned, that eating “junk food” is bad.

A wise person I once met stressed to me the importance of food being independent of morality – that foods were not bad and good, they did not make us naughty or clean, but the government has missed this time and time again. To suggest that we might save the NHS by losing weight is ridiculous. To suggest we might be doing good for others by reducing the space we take up, is a ridiculous notion, but one that plays right into the hands, minds and plates of those with eating disorders.

We live in a society that mostly suggests body positivity is reserved for those that occupy smaller bodies. I have occupied a tiny body and a larger one now. I have taken up more space recently, maybe more than society would like me too, but I won’t listen to the barrage of negativity that this news cycle brings. I will listen to my happiness. I will listen to my health. I will listen to myself. I am happy, I am healthy and I may occupy more space than I did, but that space gives me flexibility to enjoy ice creams with my boyfriend, or brunch with my friends, or tuesday vegan feasts.

This society celebrates disordered eating, excessive exercise, being underweight. This society inadvertently celebrates anorexia behaviours. I see endless adverts for weight loss programmes and tips that sound just like symptoms I had. This society hasn’t given me room to grow but I have anyway. This government wants you to feel guilty for taking up the space that you deserve. Weight gain and fat are not evil – they are necessary sometimes and always respectively.

You are a good person, regardless of how you nourish yourself, how much body fat you have, how you use the NHS. You are a good person because of your love, care and understanding, not your silhouette.

My pup that doesn’t care how much space he takes up

Plane sailing

There’s a lot going on in the world right now and I don’t want to in any way belittle that. There are really important things going on with Black Lives Matter, with people showing up to fight the injustices that black people face every day. (The fight is ongoing and shouldn’t stop until we have fought everyday and systemic racism. I’ve included some links at the bottom to places you can go to educate yourself and things you can do). There is a pandemic going on, a pandemic that won’t leave any of our thoughts, a pandemic that has taken so many lives, here in the UK and all over the world. But the latter has meant for many people, that they have started struggling with their eating, relapsed into their eating disorder, that they were struggling already but more so now. So I want to share a little bit of hope, a little journey I have been on, that you can go on too if you’re struggling.

I wrote the following paragraph for my eating disorder nurse and social worker right after I left hospital, after being served every meal, supervised, confined, for 7 months. I wrote about a month after I left because I had gone downhill rapidly after leaving. Here goes…

It’s like I’m flying a plane, but perhaps flying is the wrong word. I feel like I’m descending, and I’m in charge of all these controls, but I have no idea how to use them, and I’m desperate not to crash, but I don’t know how not to. Last time this happened, I had my eyes closed. I pretended that nothing was going wrong, that I was still happily floating along in autopilot like I had been all my life, that my plane wasn’t headed for a crash, so you all stepped in. You picked me up, pushed me out the way and took control. I was no longer flying my own plane because someone was doing it for me. My flight started flying upwards again, but I wasn’t at the controls. No one taught me how to use them, so I guessed, and tried to watch over their shoulders and see what I should be doing, but I didn’t catch very much of it. So I left hospital, and suddenly I was shoved back in the pilot seat, faced with all of these controls and the instruction “Fly”. I’d spent all these months just sat in the background, waiting, and when it came to it, I didn’t know how, and I still don’t. I don’t know how to stop the descent, but I have my eyes open this time. I can see it, and I want to stop it. I just need a co-pilot, or some co-pilots, or some instructions, because I know I can’t do it alone or do the same thing any more. I don’t know what support I should be asking for, or what anyone can do, but I want to be better at this. I want to learn, rather than just keep having to get someone else to do it for me. 

I talked to my nurse about this recently and we talked about where we all are now. We decided I’ve dropped her and my psychiatrist off in the Maldives (or somewhere equally nice to have a holiday) and I’m soaring above. There are days of turbulence, blips, weeks where I’m convinced I’m going to crash again. Sometimes, the world throws in a few new switches, like one walk a day in a pandemic, and it takes a few days or weeks to adjust, to remember that life doesn’t come with a manual but we work it out as we go along. I still have co-pilots, my wonderful friends, family and boyfriend. They don’t take over, they don’t fly the plane for me, but sometimes they remind me where the buttons are, what I did last time to carry me through the turbulence.

What I’m trying to say is, I learnt. I learnt how to fly again, how to fuel my body, how to look after myself, how to eat. I learnt how to love myself for the size and person I am. I learnt that recovery is possible, and even if it looks different for everyone, it looks being at peace for me. What I’m trying to say is, sometimes we all need co-pilots, and that’s okay, but that you will learn, you will grow, you will be able to say “I know how to fly this plane”.

7 months out of life.

If you know me well, if you see me in person, if you get me chatting, I talk about hospital a lot. I especially talk about it with people who were there with me. I don’t mean to bring it up quite so much but it’s hard not to when it was such a big part of my life, such a long time of my life. But there’s a reason I speak about it more than that. It’s to make it seem human again, to make it seem real, to remember the funny moments to remind me it wasn’t all traumatic.

I know others had it worse than me in there, others stayed longer but in my own way, it was awful. The constant noise, the beeping, the alarms, the shouting, the non-descript noises from the ward downstairs. I get images and sounds in my head of things that happened, other people’s trauma, but my wise boyfriend reminds me that just because you weren’t directly harmed by a trauma, being witness to it is still harmful. For a while, I couldn’t even eat foods we had while we were there. I couldn’t bear to see those images, to be reminded of it. But slowly, through being open about it, through talking about it, I’ve worked to remember that those moments, those memories, don’t control me. I tell myself I am safe now, I am okay, I am not there anymore.

I tend to remember most the things that overwhelmed me – the light from the hot plate where our food was kept, the screaming, the crying both my own and others, the days where we couldn’t go outside to walk. I remember sitting in groups hearing bracelets clicking, pens clicking, breathing, teeth being sucked. I remember crying for hours in my room, so overwhelmed that I was hyperventilating, so loudly that I could be heard through the door, being told after that staff were walking straight past not caring. I remember being so overwhelmed by the amount of food I was being forced to eat, by the weight I was being forced to gain, that I was driven to exercise, something I had never had an issue with before. I remember that it was impossible to cry and exercise at the same time, so I’d run and run and run, to stop the tears running. And I cried about everything – the wrong mug, the wrong bowl, the wrong song at the wrong time, the wrong brand of peanut butter, putting on weight, losing weight, leaving the hospital grounds, coming back to them.   

But there were saving graces. Some being the occupational therapist and assistant who got me going out again, who made sure I didn’t only leave in a car at night in a poncho under a blanket (yes, my poor Dad drove me round Richmond in those exact conditions). But the real saving grace were the other patients – they were the ones who said how proud they were when I didn’t go out wearing my poncho, the ones who sat with me while I cried in the uncomfortable brown chair, the ones who never sat in my spot in the lounge because they knew the change upset me, the ones who swapped bowl with me at breakfast because I needed the same one. They were the ones that carried me through when they were busy carrying their own pain and troubles. They were the ones who helped me realise I was ill, and the ones who gave me hope that I didn’t have to be ill forever.

I didn’t leave better. I left and went straight back downhill but I have clawed my way to recovery. I have fought harder for recovery than anything else in my life but I refuse to be defined by the place that left me in a worse state than it found me.

A picture from the grounds in summer

Coronavirus, Autism and You

It’s hard to find the right words right now, and it would be awfully easy to say none at all, but these are rather unprecedented circumstances. These are difficult circumstances. For some, these are almost impossible circumstances, so I must say something, like I do with all my blogs, in the hope that someone might feel just a little bit less alone. I can only talk for my own experiences, my experiences as an autistic person, my experiences as someone who has lived with anorexia for the past few years, but for ease of reading, I’ll focus on just the former.

I’ve been up visiting my boyfriend in Derby, preparing to move up here in the coming months, and I had just started to form a new routine, one that would be continuing when I finally moved here. Then lockdown was announced and the only thing I could think of to do that would become part of my daily routine was a good old cry. I have had the same routine with Rudi (my lovely pup) since I got him, and that had to change.

I was left in quite the quandary – autism makes me a firm believer in rules, and terrified to break them, but autism means this routine that was set, erring from it was unimaginable. In the end, I’ve stuck to the rules. I’ve made myself a new routine, but it feels like I’m wearing shoes that don’t fit. It feels to me like what I imagine it would feel like to a neurotypical person if you swapped round which way their doors opened. Imagine getting up, trying to open your fridge, your bedroom door, your washing machine, your cupboard. Imagine how much time that would take to get used to. Imagine how frustrating that would be in a rush. Imagine being autistic and getting up and following a routine when it feels like all the doors are backwards.

But it hasn’t just been routine. I have an old jukebox in my head of social situations. You say something, I flip through, I find out what worked last time, I reply. I have a jukebox of social situations that have happened before or that I’ve seen in movies and tv shows. Except they haven’t made a Grey’s Anatomy episode where there’s a pandemic. Meredith hasn’t had to facetime her loved ones and tried to figure out what to say. I don’t know whether it’s okay to tell people that you’re worried about them. I don’t know whether it’s okay to tell people to not stand too close to you.

Now please don’t get me wrong, even though my change in routine and not knowing how to cope socially felt distressing, I can’t begin to compare it to the distress that others are feeling right now losing loved ones, being terrified of getting the illness, being stuck in unsafe environments, but it doesn’t mean it doesn’t matter. Our mental health is so important in this pandemic, and though I will stress autism is not a mental illness, living in a world that isn’t suited to your needs can take a massive toll on your mental health. There are so many other things making this harder but we could be here for days if I keep writing about them all, but next time you see someone “moaning” about how this is affecting their mental health, try wearing my shoes that don’t fit, or opening your backwards doors, or taking a moment to remember that some people need a jukebox in their heads to know what to say. Try remembering that yes, this is hard physically, and this is hard for neurodivergent people, but this is also hard for you. I don’t know how (damn it Grey’s Anatomy catch up) but I know it is, and I know we’ll need each other through this. I know that we’ll need to wear other people’s shoes a lot to understand their actions, and we’ll need to loan out a lot of our own so people can understand our feelings, but don’t stop talking. Don’t stop remembering your feelings matter no matter what’s going on in the world. Don’t stop looking after yourself.

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