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 2

I can’t really remember what it was like when I didn’t have to hide part of who I was from the world. I have been doing it for so long it just feels normal. Learning how to come across as ‘normal’ took up most of my later teenage years. Unlearning the things that had used to keep me safe from pain to allow myself to become more socially acceptable took time. Getting to grips with the oddities expected from society meant learning to put aside my own views and trying to get my head around the bizarre nature of people who aren’t driven but logic and reason.

When I tell people that I’m autistic the first response is often that I don’t seem very autistic. I get why they say this, I have spent years learning to how to come across as normal, but also people have this idea of what autistic people are like, often taken from quite unreliable sources and very gender stereotyped. I am not interested in prime number like Christopher in the curious incident of the dog in the night time. I am able to hold a conversation and am great at faking eye contact.

I struggle with the way autistic people are portrayed in the media and the lack of understanding between how it differs between men and women. People often don’t seem to understand that we grow up and learn the same way non-autistic people do. An autistic child is very different from an autistic adult. I know it is a spectrum and that what is true for me isn’t true for everyone but what people believe about autistic people and the inaccuracies of that affect me.

I’m happy to talk about being autistic and feel to some extent I have a duty to inform people of the reality of it if people like me don’t speak up who will? Parent advocates are not autistic themselves seem to forget that autistic adult exist too. Mst of the work done by charities is aimed at those who are less able to stand up for themselves ( this is obviously necessary) but it does mean that people like me are often sidelined, too autistic to fit into to general society but not autistic enough for the autistic community.

People like me are an awkward in-between. We have learnt to hide the fact we are autistic so most people will never see it but we still struggle to navigate through a world not built for us.

For the past few years, it didn’t matter too much, I had little contact with the outside world but this January I started a job.

While I would like to live in a world where you can tell someone you are autistic and have no judgment at all I know I don’t. Most people have too many misconceptions about it to something that I would tell potential employers about.

These days I’m good enough at hiding it that it doesn’t matter. I have learnt how to interact with customers properly and I know the right things to say. It seems easy enough, I basically stick to a script that has been well polished over time.

In many ways, there is no reason to tell anyone at work that my brain works a little differently. It has no impact on my ability to do my job, sure I say pretty much the same thing to everyone but it works. I’m highly methodical and organized things that most employers like. So there is little reason to risk my chances of a job by telling them. It is, however, something that it hard to keep a secret forever. I don’t have a great mental filter, I say what is in my head especially when I’m nervous or excited. I have a mental list of things I run through in my head but in a new environment, I don’t filter everything.

The other side of it is that I like to be honest. Sometimes in conversations, it can be hard to find an excuse for any slightly odd thing I say. We recently had the work Christmas party (yes, in February). I had thought that as I had only started in January I wouldn’t be expected to go but it seems I was wrong. I don’t do parties, I can’t be anywhere with loud noise and lots of people. I’m pretty good now at making excuses to why I don’t want to go and explaining a bit about my noise sensitivity issues, (although I still seem to find it impossible to just say I’m busy which would be way easier) but people seem to struggle to understand and will often keep trying to persuade me to go.

It’s not a big deal, I’m used to it, but it highlights social expectations that can be difficult for other people to understand why I wouldn’t want to go. I seem incapable of making a normal excuse, really I should just say I have a prior commitment but I never too. I end up trying to explain why I don’t want to go but avoiding mentioning that I’m autistic.

It feels silly. Life would be so much easier if people would understand that they don’t understand. If people like me could say we are autistic without having to explain ourselves and how yes we don’t seem autistic now but we are adults and have learnt to hide it as otherwise we would get nowhere in life. I want people to understand that just because I can come across as ‘normal’ it doesn’t mean I’m not autistic.

brighton 10

I hope this hasn’t come across too much as a lecture.

If you have enjoyed this or learnt anything from it please share so others can too!

With love,

The girl with the braid in her hair xxx