Just me and the cat

For most of the week, I am home alone with only the cat as company until about half seven in the evening when my parents come home. I’m used to it. I know how to keep myself occupied but it still gets lonely. I’m used to loneliness. It’s a familiar feeling for me. When your autistic it is an inevitable part of growing up.

As a kid, it was the feeling of not belonging. Of wanting desperately to be part of something but not fitting in no matter how hard I tried. There is nothing more lonely than being alone in a crowd. That feeling of total isolation despite being surrounded by other people. I learned quite young that it was much better to appear to choose to be alone than to let yourself be isolated by others.

I suppose it was part of my survival mechanism, I would tell myself I wanted to be alone rather than admit it was forced on me. I would take myself off to worlds inside my head where I had friends and people were kind. I would live in my make-believe as that was so much better than the real world. I could hide from anything, even myself.

It’s not that I didn’t have friends. I did, but highly emotional autistics aren’t always the easiest people to be friends with. There was also the fact that quite a lot of my classmates didn’t like me, I was too weird for them, over sensitive and easily upset. I remember the feeling when things went wrong, when the people I was trying to be friends with told me that they didn’t like me and I wasn’t to talk to them anymore. When I was told by others that I wasn’t to talk to the one friend I did have at school anymore as they were her friends now. It was totally crushing.

As I got older I made friends out of school. That helped but I still spent most of my time on my own. There is a common misconception that autistic people are anti-social and prefer to be alone. While that may be true for some people it’s not for me. I need human contact. I need friends and conversation, while I am happy to be alone some of the time it cannot be my constant.

Now it’s being on my own with no one to talking to for most of the day. Missing the sound of human voices, needing something to break me from the monotony of daily life. My friends are amazing but spread around the country and therefore I don’t see them very often. Visiting is difficult and tiring and even being visited uses more energy than normal. Then there is the fact that even when I’m able to visit they have their own busy lives, with uni, work and boyfriends.

As I have been getting better my need for social contact has increased. Even though I am now out twice a week and go to a cafe to write (and make faces at the babies) I still find myself needing more. I know in many ways this is a good thing. It means I’m getting better, but it doesn’t stop the feeling of loneliness.

 

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Jakey my closest companion

This most likely will be my last post before the new year! So have a good December!

With love,

The girl with the braid in her hair xxx

 

 

Brighton on a tightrope.

It’s funny how fast the year seems to be moving. Everything rushing forward just to be repeated again the next year. I like to think by this time next year things will be different. Trump will still be president, we will still have terror attacks in our citys and we will still be talking about how the world seems to be crashing down on it’s self. But I like to think I will be better.

I want to believe that my body will work how it should, that I won’t have to limit my writing to only 30 mins a day. I want to believe that I’ll have my energy back.

I know things are getting better. I know I am miles from where I was at the start of the year but there are times, my quiet, slow moving life still frustrates me. I want to be able to keep up with my friends. I want to have more of a social life. I want to be out in the world, able to enjoy it. And sometimes, the closer I feel I am the more I miss what I used to have.

Thoughts like this come more often when I break away from my normal routine. I have become used to putting my recovery before enjoyment. I’m used to thinking everything I want to do over and making sure I don’t over do anything. Everyday is carefully managed so I can keep going at the same level the next day and slowly, slowly creep forwards towards my end goal.

But sometimes I need a break from it all. I need to let myself feel like a normal 22 year old. I need to spend time with my friends and have fun, even if that means sacrificing a week or so’s recovery.

So, when one of my oldest friends was finally back in the UK, after gallivanting around the far east and we wanted to meet up, we decided to spend a few days in Brighton, instead of meeting for only a few hours in London.

I shopped about to find a good priced hostel room and managed to find us a private double room for only £20 each a night which was the same as what we could of paid to share a room with strangers. I was glad I could find a private, as much as it’s nice to meet people in hostels, sleep was higher on my priority list this time and Lizzie being my only room mate would make that easier.

We met in Victoria station. Despite having not seen each other for almost 2 years we immediately fell into the easy friendship we have always had. We have both changed a lot but that doesn’t seem to matter.

We settled down to a picnic on the train catching up of the past two years. There is always a lot to say when you haven’t seen someone for a long time. We reached Brighton in the early afternoon and after some slight confusion, due to me writing down the wrong road name we found our hostel.

I was tired by the time we got there but didn’t want to say anything. It had been so long since we had seen each other I didn’t want to put and damper on things by being tired. We headed out again and took a walk along the beach front, eating ice cream and talking all the while. I love being by the sea. I love the power of it. I can’t really put it into words but the majesty of the ocean is one of those things I truly love.

Brighton has a big tower-lift-sight platform thing. It takes you about 200 meters up and is all glass so you can see all around, over the water and across the south downs. By the time we had walked up to it I really wanted to stop and rest for a bit. It had already been a long day and I could feel the earlier excitement starting to catch up with me. But I didn’t want to say anything.

When I’m with other people I am so aware how annoying it must be for them to have to do things and my speed. Even when I’m trying to keep up I can’t really. I tire out and become sluggish. Everything becomes hard till I can hardly have a conversation. I try to avoid getting to this stage because I know its bad for me and it’s not fun for the person I am with, but if I am to avoid it I have to take things slow, which I feel bad about doing when I’m with other people.

I needed a break but the capsule thing was just leaving and Lizzie didn’t want to hang around for half an hour waiting for the next one so we carried on walking. We didn’t get that far before I got too tired so in the end we turned around and ended waiting for the next one anyway.

It was a nice break. A chance to stand still for a while and watch the the world as we came up and then down again in a space bubble.

We then headed back to the hostel and then out for dinner. We spent the evening playing manopaly and when to bed at a reasonable time. We chatted as we lay in the semi darkness. Questions and ideas seem to come just before sleep and it was a chance to talk about things in more depth than we had done during the day. It was nice to lie there sharing ideas and thoughts. We have known each other so long but it’s rare you get a chance to properly dig into things.

Lizzie had got up and gone for a walk and was on her way back again by the time I was ready to get out of bed. We ate a quick breakfast before going out and exploring the Brighton museum and the royal pavilion. There was quite a lot to see, I always enjoy walking round historical places. My brain wasn’t 100% so I didn’t pick up everything there was to see but it was good.

We headed back to the hostel for lunch and then I asked if we could have a quiet hour. I knew I needed some down time before we headed back out again.

I felt a bit bad for needing a rest as we were only in Brighton for 3 days but at the same time I knew if I didn’t I would really struggle later. I know people understand that I have to take things slowly and do less then I’m used to but I don’t like to make a big deal of it. Normally when I’m tired I can lie down for a bit or watch mindless TV but I feel pressure when I’m with other people to keep going.

After the rest we went and explored the area called the lanes. It’s a small area with narrow streets, antique shops and food places. We judged all the jewelry in the windows and explored a second hand book shop. I always enjoy wandering round new places an while I’m not really into shopping it’s nice looking into the windows and wonder who would spend so much money on a small rock.

I hypoed so we stopped for a tea and cake break in a small cafe. Unlike when I need to stop because I’m tired, I never feel bad about asking people to stop because my blood sugar is low. It’s not like it’s any less inconvenient but I suppose it feels easier as it’s governed by set rules. When you are below 4 you need to eat, there’s no way around it.

Once we finished the lanes we headed to Brighton pier. It’s a total tourist trap but you have to go and I love the penny arcade. I played on the 2p machines, Lizzie watching and cheering me on. Then we headed to the end to look at the rides. I know these things are super expensive but there was a super tall spin you round one, right at the end of the pier and I just had to have a go.

I’ve always loved the feeling of falling, with the wind in my hair. Sitting facing out to sea before slowly tipping backwards and seeing the pier and the seafront upside down before arriving upright again, was almost relaxing.

After a busy day we where both tired, so we found somewhere for an early dinner before heading back to the hostel for a night playing cards in our room.

The next morning we had to be out the room by 10. Again Lizzie got up and went out while I slept till half 9. She came back and I got up, we packed up our stuff, checked out and went for brunch at a bakery.

We had some time to kill so we went back to the penny arcade for a bit before heading up to the station.

It was on the walk uphill to the station that I knew I had over done it. I was so tired all I wanted to do was curl up and sleep. Lizzie was still chatting but it was hard to join in. I wanted to be able to make the most of the last few hours but I was simply too tired. I had the horrible drained feeling that can’t be push through.

It was frustrating. I had tried so hard to be careful with my energy so I could enjoy all of the trip but I had failed. I was annoyed at myself for not doing better but also I had been hoping that with all the improvements I had been making that I would be able to handle 2 nights away. It was hard to see that I still couldn’t manage even for a short period of time.

But even though I was exhausted I had enjoyed myself. It was such a nice change to be with someone for a sustained period of time. I had missed going away. Pretending for a short while I was like other 22 year olds. I knew it would be a balancing act when we had decided to come. I had hope I would have managed a little better but I can’t really complain. I am getting my life back, just a bit slower than I had hoped.

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Thank you for reading!

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Love,

The girl with the braid in her hair.