Week one: The Lofoten effect

I’m not sure when I first knew I wanted to go to the Lofoten islands. My parents hadn’t even heard of them until I said I was going. But for a while now they have been near the top of places that I had to visit. I started planning this trip over a year ago, ever since I knew I would be well enough to travel. At first, it was 3 months of interrailing but slowly the length of time I planned to be away lengthened as Norway and specifically, Lofoten pulled at my heartstrings and I knew I needed to spend some proper time there.

Planning a 5-month trip is as much not planning as it is planning, you can’t know what will happen or who you will meet and so having empty weeks makes it much easier. But when I started to plan one thing had to be part of the itinerary, 6 weeks in Lofoten. As Norway is so expensive I decided to work away for this part and found work on a small, family run, goat farm on the islands.

After the stress of my fight being canceled, I still manage to arrive as planned on Friday night, I don’t really know what to expect. I have never been to Norway before, I’ve only seen pictures and I really have little information about the people I will be working with. For me the lack of information is daunting but I’m determined not to let fear get hold of me and so even as I stand at the ferry dock at Stamsund looking around hoping someone will be here to pick me up I try to remain calm and unafraid.

I’m found my Tord, the oldest son of the farm, by being the most lost looking backpacker. This apparently, is his method of knowing who he needs to find, the person standing looking around with a giant bag and a scared lost look on their face is the one most likely to be going to the farm.

I could write endlessly about the day to day life but while I’m enjoying my work here immensely I don’t think it is the most important thing about this place. Work outside is bliss, I love that the soundtrack to my day is the calling of the birds and the wind hollowing through the valley. I love seeing the purpose of what I’m doing, planting and gardening, things I wouldn’t want to do at home. And my working days here are short only 5 hours a day five days a week.

But there is more to this place then the work or the mountains. Right now I feel more alive than I have done in years, I’m waking up refreshed and ready to go every morning, I’m going for long walks after work most days. Being here in nature is doing what I hoped it would, it’s helping to push the last of the Chronic fatigue away.

I will finish work and then have dinner, it’s at 3pm here, then all I want to do is go out into nature. I look outside and it’s like I’m pulled towards the mountains. I walk up on a  path behind the farm to an old Viking path that once connected the villages on the islands. Climbing onto the ridge you reach Vetten, where the Vikings had a warning fire when they saw invaders coming, now all you see is the stunning view mountains and lakes and the sea on all sides.

My body hasn’t climbed anything steeper than the hill on Hampstead Heath for a long time and I can hear my heart in my chest as I climb but even that I love. My body feels like my own again. I feel like I can do anything. I’m flooded with positivity, joy and happiness. Part of me wishes I had come here earlier, being somewhere where every time you look out the window you want to be outdoors would have surely helped my recovery. But I’m here now and that is all that matters.

When I’m not working or walking I’m happy to sit in the cafe and knit or read. The whole atmosphere is relaxing. Everything is so peaceful, I feel totally at ease here. Totally free. I’m under the Lofoten effect.

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Tak for reading!

With love,

The girl with the braid in her hair xxx

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.

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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.

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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

Back to the real word

Before Christmas, I was getting to the stage where I knew I was ready for something more. My body was craving the chance to get out and do something, I was missing human contact and the days that used to feel well filled where getting dull. After three years I was finally at that place I had dreamed of for so long, I was ready to find a part-time job.

Now I know that for most people working isn’t something they typically get excited about. It’s just part of life, something that must be done and put up with, something to pay the bills. But for me, being ready to work made the world feel so full of possibilities, everything felt possible, it was hard not to go round with a mad smile on my face, the years of fighting to get better had worked, the goal I had spoken about for so long felt achievable, I was walking on clouds.

All that I needed to do was find a part-time job that would allow me to work hours that I could manage, 15 a week tops, and get it. Seems simple.

By this point, it had been well over 3 years since I had last worked and my CV had a large gap in from the years of illness. I also wasn’t really sure what kind of job I should be looking for, most of my experience has been waitressing in hotels, something I didn’t really want to go back to, I needed hours that would let me get out of bed at a reasonable time and be back home and ready for bed by 11.

I needed to be choosy otherwise I could burn myself out and end up worse off that I had been, something I was not prepared to do. The chances were this would take a while but I was cool with that.

When my mother came home and told me an outdoors shop was looking for people I thought I would check it out, that was somewhere I could work, I did a bit of looking around on their website and some others and found a position that I quite fancied. After umhhing and arrring about it for a day or so I reminding myself that the worse thing that could happen was that they say no and it was worth applying.

It had been a while since I had to deal with my CV or write a cover letter and even with advice from the internet, it was a painful morning trying to get it right. A few days later I was invited for an interview and despite things getting a little sticky when I said I only wanted to work 15 hours they phoned me that afternoon to offer me the job!

I was more than pleased with myself, not only had I got a job, I had only applied for one and didn’t need to write any more cover letters!

The next day I joined the string of London commuters as I sat on the northern line into town wondering quite how I was going to get through a 9 hour day.

I managed well, adrenalin played a big part but it was by far my best first day of work. I have now had three days. My forth is tomorrow, as I only work two days a week. Fitting ski boots is reasonably interesting (if you like skiing and technical things) and we are busy enough that I don’t have downtime to get tired in.

The day after work is one of rest, knitting, and binge-watching TV but that’s fine, I knew it would be, the fact that it only takes me one day and two 12 hour nights to feel like myself again after a days work is something I’m pretty pleased by, after all, it could’ve been a lot worse.

Working has changed the shape of my weeks drastically, they no longer follow what has become a familiar pattern of kayaking on Sundays and Mondays, knitting on Tuesdays and trying to fill Wednesdays and Thursdays and writing on Fridays.

My novel has been edited so I’m working through that when I feel awake enough, I don’t work on Sunday so I can still kayak (as long as I’m not working Saturday and Monday) and I’m even hoping to go on a ski holiday!

I know there is still a long way to go until I’m am better, but this time last year I thought concentrating for 20 minutes a day was a big deal! So much has changed for the better and I’m filled with hope.

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Flying high above the alps!

Sorry it has taken so long to post, but life has got busier, I plan on writting at least one every two weeks if I can mange it.

Hope you ahve enjoyed,

With love,

The girl with the braid in her hair xxx