What a difference a year can make…

I’m not really the type of person who cares much about the big holidays, Christmas, New Year, Easter, they don’t mean much to me. Tonight I’m home with the cat. I don’t like the noise and bustle of parties and normally the fireworks annoy me as I just want a good night sleep, but as this year comes to a close I can’t help but look back and marvel at the change this year has made.

It’s been 6 years since I was this healthy. 6 years of different illness going undetected and undiagnosed and then controlling my whole life. From the diabetes that I can first see symptoms of at 17 to the Chronic Fatigue Syndrome (CFS) that has been the biggest consideration in my life for the past 4 years.

I welcomed 2015 in Austria, it was a ski holiday but my body seemed unable to ski, I remember everything feeling disconnected, the easy I had had before of skis had gone, persistent exhaustion had left me unable to really ski, I slept 12 hours every night that holiday and it was after that I first saw a Doctor to question my consistent exhaustion. I can only really think of three good things that came out of that year, starting to Kayak again, getting to terms with and starting to lose all the weight I had put on due to starting to take insulin and beginning to work on my novel.

In 2016 I finally got diagnosed with CFS and in 2017 I started to get better. By the end of 2017 I was able to go for a few hours two days in a row! and was ready to start thinking about working again.

At the beginning of this year, I knew I was ready to start working again, the idea was both terrifying and incredibly exciting, for someone who had spent the best part of three years in her bedroom and totally dependent on others for pretty much everything having an independent income and feeling like a functioning human being again was like a dream come true.

I started work on the 9th of January. After my first day of work I was buzzing and so tired I slept for 12 hours. I hadn’t told anyone about my illness intent on keeping it a secret scared that if they knew I would get in trouble.

To begin with, working was hard, I was only doing 2 days a week but I needed almost all my time off to recover from those two days. I slowly built up my endurance, in the summer moving to three days a week and in October to 4. My world seemed to be expanding beyond anything I could have hoped for. It was like being set free from a prison I didn’t even really know I was in.

But it was more than just being able to work again that has made the past year the best I have had for a long time. In starting work, my horizons opened up. I was forced to face challenges that I had been able to hide from. It took me a while to get properly comfortable in the shop. I went in with the attitude that it didn’t matter if people liked me or not, I was there to work not make friends but as much as that works in self-defense (not caring means you don’t get hurt if you fuck up) it’s a hard way to approach life.

I did quite well. Pubs with people I’m not comfortable with for me is terrifying so I always politely declined invitations to go out after work, I found reading some of the people around me hard and there were a few misunderstandings. It was only when I had my appraisal and my manager said that I hadn’t really made myself part of the team did I really start to understand why people go out with each other after work, to get out of it again I just explained I was autistic, these things just aren’t natural for me.

As I moved up to three days and summer brought a less stressful and busy working environment I started to get to know some of the people I worked with a little better. I had more energy and was starting to want to have a little more of a social life. I was still being invited out and still turning the invitation down but something in my head was becoming more interested, there were the people I was around all the time, work friends are a thing. They are not the people you go to when everything is crumbling or to share the best things with but they are important none the less. These people are the ones you spent 9 hours a day with, the one who you bitch about customers with, the ones who check up on you when stress and stupid and rude people get to you, the ones you laugh with and chat to and have to put up with whether you are in the mood for it or not. They may not be your best friends but they do matter.

As summer progressed I started to make plans for next year. I was finding joy in the small things. But being able to plan THAT far ahead seemed like a huge thing after the past few years. Everything was starting to seem possible.

By October I was starting to forget that I was still ill. The CFS seemed so much smaller and I was able to work 4 days a week AND do things in my days off. I was also the month that after 10 months of working at the shop I went to the pub for the first time, which for me was a big deal. admittedly the first time was a quite Pub in Tamworth after the ski test with two people I had worked with since I started and we talked almost exclusively about skis and ski boots and work, but for someone who doesn’t drink dislikes loud noises and busy places it was a big step.

The bigger achievement was that weekend I went to the pub again, this time a bust central London one for someones leaving drinks, I thought I would go and see and maybe stay for half an hour 3 and a half hours later I headed home, I even kinda enjoyed myself.

November brought a feeling of invincibility. The CFS hardly seemed to matter. I had a new overconfidence. I could do anything. I was on this massive high. I started working more, going out more, pushing myself in everything, thinking I was totally healthy again, forgetting that yes I was better but I still needed to take care of myself. The CFS wasn’t gone, I was better but I could ruin all the progress I had made by being stupid.

December brought busier days at work and less time off. My sleep started to become broken. I was dreaming about ski boot fittings most nights unable to switch off my brain. It was getting too much but I didn’t see that. I wanted to be well again, I wanted to be the girl who could cope with full-time work. I kept pushing on.

Looking back over the few weeks before I had my mini breakdown in the ski workshop it’s not a surprise it came to that. Even now, two weeks later and feeling much more in control again, I’m kinda impressed with how much was going on in my head before the implosion did come and that it didn’t come sooner. I was always going to crash, I was doing too much too soon, the signs where there, I just choose to ignore them.

But now, having survived my first Christmas in retail working full time (two weeks only) and having come to terms with the fact my body is much better but I’m not quite fully fit yet I feel a sort of peace. This year has been the one I got my life back. And whatever 2019 brings I know it will be built on the success of this year and the progress that I have made and the friends that have seen me through.

43199596_2228995977111804_3670220859202600960_n37405641_2112056795472390_4544292385210761216_n34909212_1709069342481271_3331648033208139776_n32938344_2023623137649090_489591521163608064_n32911356_2023575044320566_103527029869117440_n32895086_2023586060986131_2651197816201805824_n32155006_2015977585080312_649990343302840320_n26993491_1891435287534543_8581785250428229222_n48144678_747186745658523_5460086812670164992_nMilou!!

My best pics of 2018! From knitted mini skirts to Estonian swings!

And so at the end of this year, I want to thank those who have helped me through it and made it such a good one! and wish everyone who has followed the spewing of my brain this year a happy new year and all the best in 2019!

With Love the girl with the braid in her hair xxx

 

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.

 

P1030347

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

 

 

Three long years

It’s hard to think it’s been almost three years since I got the cold that caused the CFS. They have, in many ways been the stranges three years of my life. No one expects to get a chronic illness at 19, it’s the time when people should be out, exploring the world, doing new things, full of energy, but instead, I had to move back in with my parents and try to come to terms with the new limits of my body.

The first year was the hardest by far. No one knew what was wrong with me and it was hard to believe things would get better. At that point, my whole identity was built around the things I did. Climbing, skiing, spending time in the mountains, that was who I was. Losing that and having to move to a large city far away from everything I loved almost broke me.

The second year, I found purpose. I started writing a novel, it was an accident at first. I just woke up one day with an idea in my head and I knew I wouldn’t rest until I followed it. I had the time and even with my problems concentrating I managed to write. Often I would be left exhausted by the effort I made each day working on the novel but it was worth it, it gave me something to focus on and if I didn’t use my energy on writing then all I would be doing was binge-watching TV and knitting.

For a while, I tried to convince myself that this was enough. The internet was full of stories of people who never got better, who had to learn to live within the confinements of CFS and it was hard to believe that I would get better at all. My life, it seemed would be spent inside a house with only my imagination and once weekly kayaking as an escape.

I tried hard to make myself believe that this was enough, that I could live within these parameters. But I knew deep down I was doing that because it felt safe, I was scared of losing the few things I had by trying to get better. While I tried to convince the outside world that things would change and I would get my life back I struggled to believe it. I have written about this in more detail in Stuck in a bubble

Getting better was always the aim, getting to a point where I could live the life I wanted to. I thought as I got better things would just get easier and some things have. (Please note I am not complaining at this point, I am thrilled at my progress but it can still be damn hard) What I didn’t expect was that even as I got better some things would get harder.

As I have said before CFS is a constant balancing act. I’m always having to think about everything I do. Is this worth the recovery time? Am I ready to introduce something new into my week? What might be causing this excess tiredness? On top of this, I have to balance all the considerations for my depression and diabetes. It can feel like I spend half my time trying to balance one aspect of my life against another.

I know this is something I will always have to do to an extent. Carbs will always have to be counted, depression will always need to be kept on top of. It is just a fact of my life. And I don’t mind for the most part but every now and again it gets to me.

Sometimes I want to get away from it all. I want to be able to do things and eat things without needing to think too much. I won’t talk about this readily normally. I don’t want to be seen as complaining after all things have got a lot better. But it doesn’t stop it being hard. Getting better, it seems means more thinking, more balancing and more patience.

It’s also more lonely. Before I didn’t have the energy to go out and too much social interaction would leave me exhausted, I couldn’t cope so I didn’t crave it as much. I was too tired to want to do things, life was boring but I knew I wouldn’t cope with anymore. Now I need more, my week is managed day by day, Sunday is kayaking, Monday is also kayaking (being out two days in a row is a big deal!) Tuesday is recovering from being out two days in a row, Wednesday is normally cooking dinner and lots if knitting, Thursday, and Friday are writing days, either one or the other I will go to a local cafe for a few hours with my laptop and write and Saturday is just dull. I don’t want to tire myself out before my two days kayaking.

For a while, this formula worked but now I’m needing more again. In the new year I know I will need something more, preferably something that pays money. I need to have more interaction with the world. 5 days a week with no one but the cat to talk to all day is too much alone time. But I’m scared that it will be hard to find something that I will manage, after all, it’s been three years since I last had a job and I will only be looking for a few hours a week.

I feel a million miles away from where I was. It’s hard to believe that a year ago I would go days without leaving the house. That I didn’t know if I would ever get better. Now I know I will. I know I will get back to where I want to be it’s just going to take a while. And in the meantime, I will write, kayak and knit my way through each day. Until I run out of words to write, yarn to knit with or the Thames runs dry.

10933096_932675160077232_226888060_n

Sorry, it has taken so long to get another post out, I have been a bit preoccupied with my novel and vast amounts of Christmas knitting!

If you like what I do please help spead the word on FB and twitter ect.

thank you

The girl with the braid in her hair xxx

 

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