Being me (part 1)

I’m autistic, it’s something I have wanted to try to write about for a while. It’s one of those things that is spoken about a lot but still misunderstood by most people. People talk about autistic kids but rarely about autistic adults and when they do it tends to be the ones who are non-verbal or can’t manage the world on their own. And there is still limited understanding about autistic women, making it hard for us to be recognized and diagnosed and often meaning people dismiss the difficulties we face.  And the only way to change this is for autistic women, like me to speak out and try to help educate the rest of the world.

I’m never going to be able to say everything I want to in one post. There is far too much and my brain will end up going on and on forever trying to get it all down and soon it won’t make sense to anyone. So I’m going to try to break it down. When I’m writing about being autistic it will be a Being me post. And hopefully, I might help some people understand a bit more.

It’s hard to know where to start. I’ve changed and grown up. I’ve learnt so much about the world and myself. Most of the time people won’t guess that I’m autistic. Most people think I’m a little weird but that is about it. I (try) to come across as a confident and cheerful young woman. I have learnt to hid and reduce any signs that I might be different. I have spent my life learning how to fit into a world that made little sense to me.

It might seem like a good thing. Learning to come across as neuro-typical (non-autistic). It certainly makes life easier for other people. And while it has allowed me to fit in and cope with the world, it has had quite a heavy toll.

Most of the autistic you will meet have done the same thing. That’s why we are the ones you meet. We were able to adapt to your world, to learn how to act like you, talk like you, we copied the things you did and watched you interact with the world until we could do it too. We suppressed our natural behaviour to seem more normal. We did anything we could to fit in.

I wasn’t diagnosed until I was 18. Compared to a lot of people it’s quite young but there was still a lot of re-understanding to do.

I was about 8 when I started to realize I was different. I couldn’t seem to connect to my classmates the way they did with each other. When I got upset I would lose control and hit myself and until my thighs burned and hands hurt. I never understood jokes and hated it when the classroom got too loud. It was like I was on one side of a glass wall and everyone else was on the other. I desperately wanted to fit in but I didn’t know how to.

I remember trying to explain to my mum how I felt. I was 8 or 9, it was winter. She was in the kitchen cooking and Simon and Garfunkel’s I am a rock was playing. For those who don’t know the song, I have added a few parts:

I have no need of friendship
Friendship causes pain.
It’s laughter and it’s loving I disdain.
I am a rock
I am an island

Don’t talk of love
Well, I’ve heard the words before
It’s sleeping in my memory
And I won’t disturb the slumber
Of feelings that have died
If I never loved, I never would have cried
I am a rock
I am an island

And a rock feels no pain
And an island never cries

 

I’m named after an island, the Ailsa Craig. So I thought I was being really clever when I tried to explain to my mum that it was a good thing I was named after an island as I was like one. I was part of something bigger and yet not fully connected to it. While I could see my classmates play and interact I couldn’t be part of it because I wasn’t quite connected to them. I was an island and they were the mainland.

I was really proud of my analogy. But my mum seemed less impressed and told me not to be silly. At the time it really hurt, yet again I was being told the way I thought was bad. Now I can see that it must of be quite concerning for her. Parents want their kids to be happy and there I was trying to explain how I could never really connect with other people because I was an island.

Whenever I said that I was different I would always be told that everyone felt different and it was normal. When I got upset and hit myself I would be told off and be made to feel like I was being naughty. My classmates would tease me and make me feel small. There was nothing good about being different. I was a freak. I didn’t belong and people made sure I knew that.

I didn’t like being different but I didn’t know how to be like other people either. I had this sense of who I was that I couldn’t get rid of, even when I wanted to. I tried to embrace it. When people told me I was weird I would thank them, when people were telling me I wasn’t good enough I would repeat my ‘motto’ to myself ‘I am who I am and nothing you say or do is going to change that’. It might seem like I was taking pride in who I was but really it was all I could do to keep my head above the surface.

As I got older it just got harder. The more self-aware I became the more I hated myself for not being able to fit in. When I got upset I would get angry that I still lost control and would hit myself. I knew physical pain made me feel better but when you are 13 and standing in a corridor punching yourself in the head people talk. Frustration would burst out of me and I couldn’t control it. And I would then get angry that I couldn’t control myself and everything would spiral.

If I was violent towards other people it would have been picked up on. But I loved rules and hitting other people was bad, hitting yourself, however, was never mentioned. My teachers thought I was overly emotional but never more than that and I got better at waiting until there were no adults about before I let myself lose control.

I was told over and over that the way I got upset was wrong. The way I dealt with emotions was wrong. The way I saw the world was wrong. Everything seemed wrong so I started to learn to hide it. The older I got the better I became at hiding who I was. I hated doing it but I hated being picked on and made to feel worthless more.

These days people often try to be different. It’s seen a cool. I used to hate it. I would often wish that just for a day I could know what it felt like to be normal. I desperately wanted to be like everyone else. To not be a freak, to fit in and have an easy life. I was fed up of being told I was worthless or that the world would be a better place if I had never been born.

So I got good at hiding who I was and pretending to be normal. It took a long time but now most people can’t tell I’m autistic. I can cope with the world easily. I know how to act and what the right things to say are and while sometimes I mess up, for the most part, acting neuro-typical is second nature.

I hope that this rather long and rambling post has given a little insight into what it was like being autistic when I was younger. There is obviously so much more to say but I recond this post is long enough as it is. I welcome any questions you might have, either get in touch via my facebook page or leave a comment 🙂

With love,

The girl with the braid in her hair xxx

Those pesky things called feelings

CFS isn’t an easy thing to live with. I guess that’s not really all that much of a surprise. Having a body that doesn’t seem to want to function in the way it should is never going to make things easier. Losing my independence wasn’t easy either. I had always thought that when I left home it would be for good. The idea of going back was never considered, even when I got ill in Canada I knew I would be able to cope on my own.

Leaving home gave me the space I needed to come to terms with a lot of things. It allowed me to stop being angry and start to understand why somethings had happened the way they had. I’m autistic. It’s not a big deal, not anymore. I’ve learnt to understand what it means for me and for other people around me. It’s all I know and I wouldn’t change it for the world, but that doesn’t mean it made growing up easy.

Misunderstandings made me fiercely independent at quite a young age. For a long time, I believed the only person who could look after me or understand me or even like me was me. Growing up feeling different, wishing that for just one day I could be like everyone else, hating myself for not being able to understand other people took its toll. It’s hardly a surprise I have had depression for over half my life.

I don’t want to dwell too much on the past. Those things happened a long time ago. I’ve come to understand why they happened, and I don’t blame anyone, not anymore. Shit happens, it’s a fact of life. There is no point trying to find someone to blame or holding on to anger from the past.

I do sometimes wonder what my life would have been like if I never got ill. If I had been able to run as far away as I wanted too and not look back. Would I be happy? Would I have forgiven my past? Would I be in contact with home? I don’t know, but as harsh as it sounds I don’t I would be.

I don’t believe in fate, or that things happen for a reason or anything like that. I believe in people and in making the best of things. I believe in not giving up and looking for the good in every situation. And I think I have got quite good at that. Sometimes I worry that I have got too good.

Since getting CFS I have perfected my ability to smile when I really want to scream. I have become an expert at telling people I am fine and wittering on about all the good things because I know that’s what they want to hear. I don’t like to admit when I’m struggling. I don’t want to pick up the phone and just cry because life isn’t fair and I’m fed up. It doesn’t seem fair to subject anyone else to that.

And often getting overly upset about things doesn’t help me either. I know it’s important to allow emotions to come and be felt, but I also know dwelling on them just makes things worse. As much as I don’t want to subject other people to me when I’m upset, I don’t want to let myself feel that negativity either.

I hate the feeling of falling apart, of not being able to cope. I have always been proud of my ability to cope with shit. I have always seen it as a strength but maybe it’s not. Remaining positive is one thing, forgetting that it’s ok to not be ok is another. And recently I think I have been forgetting.

I know why, I’m scared my depression will come back. I have been able to enjoy almost two years of feeling good and being happy. Something at one point I didn’t believe would ever happen. And when I tell myself I’m happy, things feel ok. When I push aside the uneasy feelings and paste on a smile, I can kid myself into believing things are good.

But sometimes it’s not. Sometimes I do need to cry. Sometimes I need to let myself no be ok for a few hours. Sometimes I need to pick up the phone and cry. I need to remind myself it’s ok to not be ok.

It’s not an easy thing to do. I have to psych myself up for it. One of the things about being autistic is emotions come all at once. I’m either fine or totally overwhelmed. And the feeling when too many emotions are coursing through me is horrible. There is often a physical pain. I feel like I am drowning in feelings and I just want to push them out. This is why autistic meltdowns often are loud and violent. It’s also one of the reasons I’m so keen on being fine all the time.

But recently, I was able to get it right. I knew the feelings where coming, I had that uneasy feeling in my stomach which is my early warning system. A red light was flashing and I knew unless I did something soon I was going to implode.

So I did the thing I hate to do. I picked up the phone and I cried. I talked to one of my best friends about how I felt and she listened. I put my pride to one side and admitted that it’s sometimes necessary to let those pesky emotions come out. And I felt better for it. We talked and I cried until we talked and we laughed. I knew what I needed but I have always been scared of reaching out and asking for it.

I knew what I needed but I have always been scared of reaching out and asking for it. I don’t really know why. If one of my friends was upset and needed to talk to me I would want to be there. But for some reason, I feel bad about asking it of them, even though I know they don’t mind.

It’s something I’m working on. Something I know I need to do. CFS has taught me a lot but also made me forget a few things. Now I’m getting better I need to start remembering them again.

sarah and the rest

sarah

Sarah, who will always make me laugh even when I’m crying

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Me and Naomi whos one of my oldest friends

I hope this makes sence, it made sence to me when I was writing it!

With love,

The girl with the braid in her hair xxx

Road to the river

I have always been active. For years I climbed competitively, training 2-3 times a week. I walked everywhere. When I was bored I would go out for 10+ mile walks just the pass the time. I have always been happier outdoors.

So when the CFS meant I was too tired to exercise and even go for a long walk I felt trapped. I remember the first six months I was in London. Having moved from the wide open spaces of the Highlands, London was a claustrophobic prison. My mental health suffered badly. For a long time, I have known that I need to get outside and exercise if I am to keep my depression at bay. The meds have worked wonders but exercise, the outdoors and social interaction are even more important.

But how do you exercise when you have no energy? Where can you get outdoors in such a crowded city? How do I make friends when half the time I’m too tired to manage a sustained conversation?

The less I did the more trapped I felt. My world had shrunk to such an extent I didn’t think it would ever open up again. All the things I used to enjoy I could no longer do. What was the point in even trying, when I knew I would just end up exhausted and not able to leave the house for a week?

Due to having depression I was sent on CBT (cognitive behaviour therapy) course. Most of it was pretty self-explanatory. I taught myself the basics using common sense when I was a teenager, a distinct advantage of being highly self-critical but also being able to look at myself objectively. The one thing that did come out of it, however, was that I needed to stop making excuse to why I couldn’t go out and exercise and start doing something, preferably something that would get me outside and interacting with other people.

Climbing would have been my first choice, I have climbed since I was a kid, but I was having problems with my hips and climbing was really painful so I needed to find something else. I had kayaked when I was younger but had to give it up so I could climb more. It was something I had always enjoyed so it seemed like a good alternative.

Having only recently got to London I didn’t know any places where I could try kayaking but a google search soon pointed me in the direction of the Westminster boating base. Not only was it easy to get to it is a charity and so membership for youth member (which I was) was super affordable (£15 a year with everything you need included in that!) So I went to try it.

It was perfect for me. Sure I got tired after a session, I was always going too. But I was outside doing sport and with other people. Going up to the river every week made time pass more quickly. I had something to look forward too. I was making friends.

The hardest thing was not over doing it and leaving myself too tired to do anything for the rest of the week. I like to push myself, try new things, keep up with everyone who didn’t have CFS. Over the winter I learnt to roll. The sense of elation when I got the boat upright for the first time was one of the best feelings I had had that year. It was a true achievement. It wasn’t something I had to tell myself was good because of the CFS or anything else, I had learnt a new skill and I was excited by that.

I went every week no matter what the weather was like. The days it had to be cancelled due to poor water quality (the Thames isn’t known for its crystal clear water) I would find my mood dipping. I need to kayak.

I could talk about the skills I’m trying to learn, the fact I managed my first (almost) stern squirt the other day but that will mean very little to most people. I enjoy learning the skills, but I often find the line between pushing myself enough to learn and overdoing it a hard one to walk. But there is more to it for me. Kayaking is where my friends are, it’s something I can do that lets me feel the power of nature, something that can be hard to find in such a big city. And my progress over the last 2 years in a boat is showing me how far I have come with the CFS.

If kayaking has taught me anything it’s that I still can do the things I love. Now I’m getting better I can look forward to the day I can try whitewater and river running. I know that in the not too distant future I will be able to keep up (ish) with my friends and play as hard as they do.

For me kayaking isn’t just about having fun in a small boat, it’s my social life, the place I go the spend time with other people and get chased by massive river boats when we get in the way of their pier’s. It’s a break from my everyday routine and a chance to let my hair down and have fun. If anything in the past few years has helped me come to terms with and start to beat my CFS it’s kayaking.

kayaking

Bridge climbing

 

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playing in a boat that fits

 

I hope you enjoyed reading this. Maybe you want to give this great sport a go as well? As always if you want to give me a helping hand and spread the word, please like and share on social media!

With love,

the girl with the braid in her hair xxx

 

Thoughts and words

I often feel I write best when I let what ever it is inside me just come out. The odd days where I don’t tell myself I have to write about a certain thing or describe an event but instead write about whats going on in my head. That is when words really seem to flow. That’s what I love.

When I first started thinking about writing a blog I wanted to do it because I wanted people to get an insight into what it was like to live with CFS but also because I needed an outlet for all the stories and thoughts that swirl inside my head. I spend much of my time alone, so often words are left unsaid and stories get told to no one. I was worried that I might not have enough to write about. My life is quiet and often dull. I don’t get out much. I spend most of my time in my room, knitting, watching TV, scrolling aimlessly through Facebook, listening to music and reading books. My life, at times, doesn’t interest me, how could I make it interest other people?

Some people are able to write about their lives with deep and engaging emotions, something I find hard to do. When I try to describe things I have done, I often feel my words become mechanical, feelingless and shallow.

I have always loved the why’s. The questions that get your brain running so fast you don’t think you can keep up. The times when you suddenly realised something about yourself or the world because you have been wading through thoughts you didn’t think made any sense. That’s what excites me, makes me tick. That’s what I love about stories, and why I love to write them. They allow the humanity through even without me having to find emotions, when I truly write, they are already there.

I tend to be matter of fact about most things, I suppose it comes from learning to cope with being ill and not having a viable emotional support network for most of my late childhood and teenage years. I had to learn to cope alone. I had to learn how to see through problems and understand they would one day fade. I learnt that dwelling on the pain and frustrations and the fact life wasn’t fair didn’t help and slowly I learnt to shrug things off and get on with life. To find the good things and to smile.

There are lots of things I want to write about. But I know myself well enough to know that I needed to wait for the days that these subjects feel alive within me. Then I will write them. But between times I will write because I love to and because thoughts have become trapped and need to make themselves heard.

 

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There is not a better place to think than the moutians

 

 

The girl with the braid in her hair xxx

Reflections: 25th of August

August is almost over and I’m waking up at 9:10 and walking 3 laps of the park.

I sit at the dinner table taking the piss out of my parents with only the occasional awkward moment.

I have a favourite band and sing along to their music.

I live in a city I don;t really like and hardly see my friends but somehow I am happy.

Life wasn’t supposed to end up like this.

I was going to travel the world.

Nothing was going to stop me.

Once I thought I was invincible.

Once I believed that I could make plans and expect them to happen.

It’s funny.

It would be easy to say so much has gone wrong but so much has gone right as well.

I’ve grown up.

I’ve learnt hard lessons I didn’t even know I needed to learn and I’m happier because of it.

No matter what happens I won’t curse this passage of my life.

I can’t help but remind myself at times that if I knew this was going to happen I would have run from it as hard as I could.

I wouldn’t have given this life to a character in a story but it has happened to me.

And somehow I am glad.

The novel

I wasn’t one of those people who knew what they wanted to do. For a while growing up I thought I wanted to be a doctor, then an engineer. It turns out I didn’t want to do either. It took leaving home and getting seriously ill twice for me to find what I really wanted to do. Write stories.

For people who knew me when I was a child, this might seem a bit unlikely. I hated writing. I’m dyslexic, I used to think being made to write was a form of cruel torcher for small girls. But I finally learnt how to get what was in my head down on to paper and somehow, I even started to enjoy it.

Mid-December 2015. I hadn’t slept well. I was fed up. I had spent the past year coming to terms with losing my independence and learning how to live within the prison that was my body. I needed something to focus on, something to take me away from what was happening and give me an escape.

I hadn’t slept well. It was one of those nights where I tossed and turned unable to fall asleep but desperately tired at the same time. In the early hours of the morning  (about 7ish) I was in one of those dreams that feels real, almost like a memory real. I was on a ship. A big old fashioned war ship, like the ones in Pirates of the Carribean. And in my dream, I was telling someone about how I had come to be on this ship. The words in my head were still with me when I woke up. And as I regained consciousness a story seemed to fall into my head and I knew at once I had to write it.

It took me seven months to write the first draft. Some days my brain would click into the place and the story would flow from me, others days I could hardly write a paragraph. I got frustrated on the days I couldn’t write. I felt I owed it to my characters to keep their story going and it gave me something to hold on to that wasn’t part of my dull world.

It wasn’t until I was almost a third of the way through the first draft that I realised that I had finally found the thing I wanted to do with my life. It seemed absurd that me, who used to cry when I was made to write as a child, wanted to try to make my living by writing stories as an adult.

Writing the first draft was the easy bit next, I had to have a go at editing, something that I didn’t have any experience of at all. To make things harder, when I read I don’t read every word. If I try to the text quickly becomes single words with no context at all. I have to stop and stutter over the small its, ands, thes, tos and ins. I tend to read enough of the words to get the gist of what had been written, enough to understand but that’s no good for editing a novel.

I realised that I needed to be able to listen to it, this way I would hear anything that didn’t flow and the times that I had confused quite for quiet and things like that. My sister, to begin with, offered to record it for me, she would painstakingly correct the grammar and punctuation and then read it allowed to her computer before sending me the recording.

It worked but she was busy and soon I needed more than she could give me so I switched to a text to speech program. By listening to each paragraph and then pausing and editing it I managed to find away for me to pick up on those things that I would normally miss. But it was hard work.

When I was writing the story I would find myself almost in a trance like state as the words flowed from me onto the page. I would see and feel what was happening and my only job was to try to have my fingers keep up with my brain. Even though I struggled to concentrate I was able to write because the words seemed to come so naturally.

But editing was different I needed to concentrate, to assess each word and sentence to make sure it flowed and had the exact words I wanted. Some days I would be able to do almost an hour but most of the time I struggled to do ten minutes. It was desperately frustrating, I had only got up to chapter 10 by the new year (there are 33 chapters in all).    I was in the habit of going all out on the days I could and then doing next to nothing for several days while my brain recovered from the effort, I needed to change the way I approached it. So I started to pass my writing efforts the same way I did my physical ones. No matter what I would only do a set amount each day. Sure some days it was still too much but by working like this I started to make really good progress.

I was in the habit of going all out on the days I could and then doing next to nothing for several days while my brain recovered from the effort, I needed to change the way I approached it. So I started to pass my writing efforts the same way I did my physical ones. No matter what I would only do a set amount each day. Sure some days it was still too much but by working like this I started to make really good progress.

It took another seven months to finally finish the first round of editing. My dad has gone through and corrected the punctuation and grammar so my next task is to put that in. My end goal is to publish. Though goodness knows how long that might take. But in the mean time, I’ll enjoy the whole process.

It’s funny. The thought of me writing a novel used to be absurd, but now I have done it and I can’t think of anything else I want to spend my life doing.

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Thanks for reading. Now that the heavy editing is done I’m hoping to post more often.

With love

The girl with the braid in her hair

Books, heat and hormones

It’s hot, I’m hormonal and my parents are away so for once I am having to fend for myself. It’s like everything has stopped. All signs of progress disappear as I try to manage the day to day. It’s not that I’m not getting better but suddenly I have responsibility again. I am used to living in a bubble where I can float through the world pretty much as I please, as long as I don’t want to do too much or too little, eat well, exercise enough and keep my mind occupied.

There’s another distraction too, I can read books again. I have always read. For as long as I can remember I have loved to read. I remember when I was 7 or 8 being allowed to read in bed before I went to sleep for the first time. My Mum tucked me in and handed me a Harry Potter book and told me she would be back in 5 minutes to put the light out. I remember because she forgot and I sat marvelling how long 5 minutes was after I had managed to read a few pages as I was a  really slow reader.

Books have always been there for me when people haven’t. I used them to escape the world for all of my teenage years and would happily spend all my holidays on my beanbag, with a book, not bothering to go out at all. They were always there when I needed them to take me some place where my life wasn’t happening. But for the past 2.5 years, I haven’t been able to read. My brain just hasn’t been up for it.

But now books are back. I can sit a read for hours, losing myself in someone else’s life. But it has a cost. While I can read it still takes up valuable energy that could be used for other things. They, like everything else, have to be balanced against the other things I need to do, things that normally other people do for me, like buying food and doing the washing.

I’m happy to do these things. It’s a taste of the life I used to have before CFS landed me in London. True, the scenery involved with food shopping was much better when I was in Scotland but here the shop is closer and I can walk past a small lake home to the wild urban turtles of Raynes Park.

What hits me on my first food shop, is the effort involved with walking home from the shop with a backpack full of all the food I need for a week. Normally I eat, go for a walk then come back to do some editing work on my novel but when I get back from the shop my brain simply refused to engage. I pass it off as having used more effort than normal, but it’s still frustrating.

But for the rest of the week, I have the same problem. Sure, getting up in the middle of the night to see what was going on with the general election didn’t help but Theresa May’s humiliation was worth it. I also see signs, that my hormones are playing up in my blood sugars. Pre-period I can see raised levels along with cravings for crap chocolate and increased tiredness. This, coupled with the hotter then normal weather, I suspect is the main cause for the lack of any sign of progress and the slug-like feeling that has been settling in my body.

I know I feel like this because of the heat and my impending period but it’s still frustrating. I have got used to making progress. I have achieved a level of activeness which I don’t want to give up. The better I get the more aware I am of how bad it has been. I can see the road to recovery stretch out before me and I know that I’m still a long way from the finish, even though I have made good progress.

I don’t want to call this a setback though. I don’t want to see it as a point of regression, it’s a blip. Just as small blip. They happen. I know they do. If I have learnt anything from CFS it is to listen to what my body is telling me. And right now, it is shouting at me to give it a bit of a break. Don’t try to push to get up earlier. Half 9 is fine. Yes, I am still only doing 2.5 laps of the park but it’s hot and trying to do more won’t help me. I may want to push but that it’s the worst thing I can do.

So, I spend my days immersed in books, eating shit chocolate and watching the cricket. I go and see the elderly couple I volunteer with through a local charity and enjoy my time with them and I make sure I eat properly. It’s not a bad way to spend my time but as usual, when I am more tired than normal I miss my old life more.

I miss the mountains and the lochs that used to surround me. I miss going out with my friends. I miss having the energy to be outside in the sun and enjoy it. My sister comes and goes’s. She has a job that lets her get away from the house and friends that she sees regularly. I have crap TV and books. It doesn’t seem fair.

Finally, my period comes. The cravings for chocolate go away and I can feel myself get more alert. I also change my routine. I work on my novel before I go out for my walk and not after. In the winter doing it this way round was less productive but as the heat is tiring me out it’s time to change again.

I wonder if I should have changed sooner but then remind myself that I can only make changes when I realise something isn’t working properly and I can only do that when things haven’t been right for a while. Sometimes I know I am too quick to criticise myself. I have been told throughout my life that I should be less hard on myself. But it’s hard. I won’t get better by going easy.

I’m glad when my body settles back down and my parents come home and take over the food shopping again. I never thought I would want to have my parents around. I used to long so hard to get away. I suppose it’s a sign of how much I have grown up. I know that I can’t do it all on my own and I’m not longer trying.

 

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A giraffe wearing baby booties

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Ducks!

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The wild urban turtles of Raynes Park!

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My closest companion

 

Thanks for reading 🙂

The girl with the braid in her hair xxx