Learning how to stop

My head is full, too full. Full to the extent that getting to sleep is getting harder and I’m struggling to process the day to day demands that I know I should manage. It’s full to the extent that things I would normally take in my stride are bothering me and I’m so tired I slept 13 hours last night, something I haven’t needed to do for a long time.

I also keep ‘writing’ things in my head. I don’t quite know how else to describe it when my head gets full or I have something going on that I’m struggling to process I basically start writing it down in my head, it’s half effective. When I write I always seem to address an imaginary audience. For as long as I can remember it has been how I think, as though, I’m talking to someone else, and having never discussed this with anyone before I have no idea if this is the same for other people too. But for me, it works. As for thought writing, it is a semi-effective method of organizing my thoughts until I am able to get them down properly.

I have been doing this for a while now, knowing I need to write but never quite finding the time or admitting to myself the urgency of it, I don’t always like the way I think or handle things, the way worrying and fretting and overthinking is an intrinsic part of my nature. I have been told to stop worrying a lot lately but I really don’t know how to. I stop worrying by rationalizing, by making myself take a step back and think things through, it’s not a particularly natural process, and a lot of effort goes into it. Especially when it involves interactions with other people as my source of worry. And when I’m tired I find it almost impossible.

And that’s been the problem, too much in my head and being too tired to deal with it properly. At the moment when I look at my wall calnader, it is FULL. Like the fullest it has ever been and in some ways this is exciting, I leave the country for 5 months in May, a trip that I have been planning for as long as I have felt able to plan things. And after 4 years of Chronic Fatigue being able to plan and trip like this is amazing, it’s also really scary.

For the past four and a half years my life has been within quite strict constraints. At times I have felt like a prisoner, unable to get away from an illness that is holding me back. There has been little to really excite me or celebrate, writing my novel being the biggest and best thing and finally being well enough to work again being the other. But now I am able to leave the cocoon of the last 4 years and do something I have been dreaming of forever it seems. I get to travel properly, on my own, doing what I want to do. And just the thought of it is amazing, but the compulsive planning, googling, budgeting and sleep stopping daydreaming is less so.

And when I’m not planning I’m working, 4 days a week for a long time has been fine, but I’m also coming up to my driving test and so have lessons on most of my days off, I have Doctors appointments to get the meds I need for traveling and suddenly it feels like all my days are running together with no chance to rest, and I need to rest.

I can feel myself flagging, My body needs a break for the hectic and exciting life I have been rejoicing in having. I may not feel like I am ill anymore but I’m not out of the woods just yet. I still need to listen when my body is screaming at me to stop, when I feel my ability to deal with the day to day start to slip, when my emotions start to take control and I find myself needing to go to bed at 10pm and sleep through till 11 the next morning. I may not feel ill anymore but I’m not 100% well either.

Admitting to myself that I need to stop is fucking hard. I have never been good at accepting weakness. I hate the fact I can’t keep up with my peers despite the fact I have spent the last 4 years ill. And I know it is silly. I know I can’t do everything I quite want to yet and I need to look after myself and what will happen if I don’t but I still resent it.

Admitting to myself that I need to rest is hard but admitting to someone else I need it is even harder. But for the past few days when I have been looking at my calender, my heart has been filling with dread, I honestly didn’t know how I was going to get through the next few weeks. I was getting irritable and easily upset at work. My head refused to see reason and the thought of forcing myself through the next few weeks was enough to make me want to cry. So I did something I HATE doing. I admitted I needed a break and asked my boss if I could have an extra day off.

I didn’t even quite get to the asking thing. As soon as I asked if we could look at the rota he just asked me if I needed a day off this week. I seem to be pretty easy to read most of the time and the last few days at work I haven’t been myself. So I got Thursday off. Which will give me three days in a row away from work and while two of them are pretty full one will be given over to resting. I could feel the relief seeping through me at the thought of it. I already was starting to feel in more control again.

I went to bed at 10 last night and slept through to 11 this morning. I have a driving lesson at 2 but I have been able to write all this down. My head is feeling clearer already. I may not like to admit I can’t keep up all the time. But finally, I’m learning to stop before I get to crisis point not when I’m falling headlong into it.

skiing

Whether this was worth reading or not it was worth writing.

If you bother to read all the way through cool, my next post is likely to be more enjoyable as it will be focusing to getting ready to leave the country for 5 months and then for the next 5 months this will turn into a bit more of a travel blog.

Anyway, this was what was important to me today!

With love,

The girl with the braid in her hair xxx

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

 

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