Not week 13: This me

Sometimes I get scared. Normally it’s when I’m alone, like today. Having been on the go for over 24 hours. I’m tired and bored and my mind has time to wonder. It’s August already. I can’t believe it. Time is moving fast, too fast. In less than 2 months I’ll be home again. I’ll be back in the real world. I don’t want to go back. I like traveling and more than that I like this version of me.

The me that travels is relaxed and easy-going. She doesn’t panic often, she laughs lots and smiles all the time. She talked to strangers and doesn’t worry what they think. She is confident and sometimes a bit foolhardy. She laughs at her mistakes and calls them adventures. This me loves life and everything it throws at her.

This me is goes where her heart takes her. She plans on a whim and figures out the details later. She takes trains through mountains and rolling countryside and even when they seem to go on forever she just smiles. Boredom isn’t the same either. It’s a tool to think more, to have a moment of reflection and calm. She finds joy in everything, she even wants to talk to her parents sometimes! This me tells her friends she loves them.

She misses proper towels that actually dry you but not enough to want to carry one around. She doesn’t mind 30-degree heat and can sleep pretty much anywhere. This me knows budgets need to be a little flexible and showers aren’t always possible to come by. This me is even more easily excited than normal me. And I want to hold onto her.

When I get home I want to keep this version of me alive. I want this to be the side they see. This happy go lucky, smiling, laughing, occasional risk-taking me. One who worries less and smiles more. But sometimes I wonder if she will disappear, if she will fade into the background as real life takes over, as going to work replaces exploring a city, as the daily commute becomes the train rides.

Will she appreciate her friends as much when she sees them every day? Will she want to chat with her parents when she lives with them?

I don’t want to give up this lifestyle, I don’t want to go back to the safety of my routine. Sometimes things on the go get too much and I need a break but only for a day or so and then I want to go again. I’m scared of leaving this all behind. People say travel changes you, but I don’t feel changed, I just feel free…67237458_2719103351434395_4450370259425165312_n

Week 12: A familiar face and a faraway place

Warning: this is a long one!

After 2 and a half months Sarah comes to visit. We started planning this so long ago, April to be exact. At that point, Budapest seemed a lifetime away. I had so much to do and so much to see and then suddenly I’m sitting in a cafe in Budapest seeing one of my oldest friends walking towards me.

Me and Sarah met when we are about 11 in a climbing competition, since we have done many stupid things together. It is her fault I dreamed up this trip, we are in a competition to see who can visit all the European countries first). When she said she wanted to come out it was when I thought I would be easily hopping from capital to capital. We settled on Budapest and Bratislava, I let her do the planning for this bit.

And now we are in Budapest and she is melting in the heat of mid-summer in central Europe and I find that I’m pretty used to 30 degrees now and we are joking and laughing about how I’m so excited about finding cheddar in a supermarket and everything feels so good.

We get to the apartment and she almost has a meltdown when she can’t get the key to work as it is hot and she is tired and I laugh and take it from her. We get the aircon working and she half climbs into the fridge to cool down. We laugh and I love the feeling of not having to do the introductions with someone new. I have loved everything I’ve done, I’ve met amazing people but 5 days with an old friend feels like a treat.

We get confused over Hungarian currency then cause a queue at the ticket machine for the tram as we can’t work out what tickets to buy. I force her to walk through the city to the supermarket in the heat to buy food and then we go back to the apartment and I cook us dinner and she does the washing up and everything flows.

The next day we do a free walking tour, the guide is obsessed with art nouveau which gets a bit much after a while. We eat lunch in a traditional Hungarian restaurant and find a water misster that sprays you to help you cool down. We sit by a fountain and then head to a bathhouse where we do walking races across the pools which Sarah wins and endurance competitions in the cold pool that I win.

That evening I manage to fuse the lights and the aircon in our room. We laugh and improvise. The next morning Sarah learns I will sleep through everything but my name being said. After breakfast, we head out into the city again and find our way to the musical fountain on Margaret Island and we sit getting splashed watching the water show.

The next day we take a very hot train to Bratislava. It’s 34 degrees outside and there is no aircon only an open window to keep us cool. She does her colouring in and I write my journal and knit. We reach the city and our accommodation and Sarah gets stressed out with a key again. We dump our stuff and then head into the old town for a walking tour. This one is better the guide is really good and we both enjoy it. We find dinner then head back to the apartment for a quiet evening.

The next day we do a city game (a bit like an escape room but running around the city). We enjoy it but there are a few bits that seem to have a got a little lost in translation and we way over complicate it at the start. By the time we finish we are both crazy hungry and so get pancakes followed by icecream and by the time we finish our ‘lunch’ its 5pm. We sit for a while in a square and then head home via the well air-conditioned supermarket where we spend ages hunting unsuccessfully for peanut butter.

We say we will get an early night but instead, I keep us up looking at trains and planning another part of my trip and getting overwhelmed by train timetables and then it’s almost midnight and we need to go to bed. I’m on a train to the High Tatra mountains and Sarah is going home and I can’t believe our time together is over already.

The journey is pretty easy, I each Poprad and take a risk by going to the supermarket before getting the bus but manage to time it perfectly and only have to wait 5 minutes before a bus to Zdiar comes. The driver doesn’t speak English and it’s a little hard to communicate but I manage. I overshoot the stop I want and have to walk 1.5km back to the village. I get an incredibly warm welcome when I reach the hostel and even though I don’t eat Pizza I go out with everyone that evening having cooked and eaten first.

After dinner, everyone sits out on the porch chatting. I plan with Megan and Rachel to go to the Polish lakes the next day. It’s a very relaxed atmosphere and I can’t remember how it comes up but I end up telling Rachel that I’m autistic. A few of us chat about it for a while. Rachel is a psychologist and is researching into autistic girls. There are some teachers there as well and it’s really interesting to talk to them about their experiences and share my own. It’s funny how things work out.

The next day I’m up early to get a bus that ends up not existing. Megan, Rachel and I stand at the bus stop for 45 minutes in the end but we do get to the Slovakian border and from there we walk to the national park on the polish side. It’s busy, it’s a Saturday and this is one of the most famous lakes in the area. The first bit is just on a road, my blood sugars try to go low a few times but I manage to avoid a proper Hypo.

The first lake we reach is so crowded. It’s nice but there are so many people. I find it harder to appreciate nature when it’s that busy. We sit a while and eat a little but then head off for the next part of the walk, this takes us away from the crowds and is much more interesting. It’s a long day but we all enjoy it. On the way back, we meet a Polish lady and her daughter, they have been coming to the area for years but haven’t met any English speakers before. We chat as we walk. We are all tired by this time and so it’s nice to have another conversation.

We say goodbye when we hit the main path back. The three of us try to figure out the best way to get back to the hostel, we have missed the bus we wanted and the next won’t be for a few hours. We walk the 2km back towards the border and try to hitchhike but to no luck. Then a car pulls up in front of us and a familiar face pokes out, it’s our Polish friends and they dive us all the way back to the hostel.

We all shower then head out again. There is a beer festival in the village and everyone else from the hostel is there. It’s not something I would normally go to but the hostel is such a nice place and the people so welcoming that I feel comfortable enough to go with them. I eat and drink tap water while everyone else tastes lots of beer. It’s a little noisy but I enjoy myself. As things start to wind down a band is playing outside and everyone is out there. I go outside too but the noise and vibrations from the music is too much and I return to the shelter of the building.

I see Rachel looking around for me but I can’t go outside to tell her why I disappeared. I feel embarrassed that I can’t be outside. I want to be with the others but I can’t be in that noise. Even though they know I’m autistic it’s still not fun to have to say I can’t join in because of something everyone else enjoys. I think about going home, but I don’t want to go. It’s a situation I have been in a hundred times before, the longing to join in fighting against the overwhelming stimulus that makes me so uncomfortable I have to flee from it.

But people come inside and when I explain Rachel and Megan stay inside with me until it finished and we all go home. I don’t like making people choose between being with me and being in the environment I can’t tolerate but they didn’t seem to mind and they choose me.

The next day I take it easy, sleeping in and eating nice food. I chat with Rachel about her research and manage to do some writing. It’s nice to just sit and relax. There is a thunderstorm in the evening and I sit out on the porch in the pouring rain watching in.

On my last full day in the Tatra’s, I join two Aussie sisters and we do the saddle hike, it’s the one everyone who goes to the (https://www.gingermonkey.eu) does. The scenery is amazing and I’m pretty pleased with myself once I’ve done it. After 4 years of not hiking my fitness isn’t as good as it once was but after my time in Lofoten it’s getting better and I enjoy the feeling of pushing myself.

That evening after dinner it’s movie night and so I settle down to watch slumdog millionaire in the living room. It’s been an amazing 4 days in a part of the world I hadn’t even heard about until it popped up on a Lonely Planet post on Facebook.

I’m sad to leave the next morning but I can’t help but look forward to what the final 2 months of the trip will bring.

And as a reward for getting thought all these words, have some lovely pictures!

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I hope you have enjoyed this episode!

With Love

The girl with the braid in her hair xxx

Week 11: Complications

Whenever anyone asks me I’m always gushing about how much fun I’m having and how good this trip is. It’s easy to talk about the good things, the people you meet, the things that you do. It’s easy to tell people how much you are enjoying something. It’s easy to make it sound like everything is easy. It’s what you are supposed to say. But what about the times when things get to you and when your body is rebelling and you want it to just stop?

Traveling with diabetes has its own fun. Firstly there is the logistics of traveling with meds. Insulin has to be kept cold, I don’t need very much, one of the good things about having funky diabetes, but I’m still trying to keep several vials cold in the central europian summer. Insulin aside there is my Dexcom (blood sugar meter). I honestly wouldn’t do without it. Having information at my fingertips has made the hiking and complete lack of routine much easier.

But it’s still not easy. I can’t eat the ‘normal’ traveler foods. Bread, pasta, rice, etc are off the menu in the evenings and low carb can be hard to find. Blood sugars also react to heat, stress, activity, sleep, timings of when you eat, water quantity and pretty much everything else you can think of, making it super easy to maintain good control whilst living with no routine at all.

The thing I have found hardest is hiking. In Lofoten I had a few times when my sugars got really low on the hill, it took me a while to figure out that I needed to not take any long-acting insulin for the day when I’m going to be walking. In fact, often I won’t take any insulin at all until I get back from the walk. I wish there where hard and fast rules I could hold on to but often what works one week can cause me to go really high the next.

I try not to get annoyed by it all but sometimes it feels like a disruption I would rather live without. It also means I’m a bit wary about going out with other people, I don’t want to hold then up with my blood sugars getting low. For the most part, it’s been manageable but I felt like I’m fighting a losing battle some days when I go out.

Then there is the fun on the Chronic Fatigue. If I’m honest I’ve been really pleased with how my body has reacted to everything, As long as I sleep well at night very little has been too much. I have been getting tired, but often a quiet day has been all I’ve needed to recover. But it can be hard to have that quiet day, there is so much to do and so much to see that not going out is hard. And so by the 20th of july, I had pretty much run myself into the ground and needed to stop for a while.

Through necessity I booked myself an Airbnb in Vienna a crashed for a few days. I didn’t go out that much and In slept a lot. And after 5 nights I did feel much better.

I knew I was likely to need to take a bit of time out, 5 months is a long time and for the most part, I have simply been rejoicing in being able to be out in the world doing these things, but sometimes it’s hard.

I want to be able to eat normally and not having to think so far ahead with my insulin and food. And I wonder if there will ever be a time when I don’t have to take so much care with sleep and rest? It can be hard to accept to myself that despite everything I can’t quite travel the way I want to, but every time that thought come up I remind myself that a couple of years ago all this would have been impossible.

Sure there are complications, but I would rather live with them than not try at all.

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With love,

The girl with the braid in her hair xxx

Week 10: Tents, Trains and Towers

I wake up at 7am after a fun night that seriously lacked in sleep. I pack my bags as quietly as I can and leave the hostel. The streets of Berlin are already full of people heading out for the day and I debate with myself on whether or not I should go to the bakery for a coffee on the way to the train. Despite my new resolution to be more relaxed the time conscious part of me wins and I head straight for the train station.

There is a sign on the platform which I can’t read so I simply board the first train that comes to the right platform and wait. It sits there for 5 minutes which I find odd but since my German is only up ordering a coffee level I have no idea what is going on so sit and wait. When the train finally does start moving it’s in the wrong direction, a good indicator of how my whole day will go. Luckily I get chatting to a woman who understands German and also got on the wrong train together and she navigates the disruption for the both of us making it much easier for me to manage it all.

By the time I’m heading to Berlin Ostbhanhof I’m convinced I’ll miss my intended train and very glad that I’m on an interrail ticket and so I can just find another one. When I reach Ostbhanhof its less than two minutes before the train I want will leave but seeing it sitting one platform across from me I hurry down the stairs through the tunnel and back up to the platform and somehow manage to reach the train less than 30 seconds before the doors shut.

I spend most fo the short journey to Hannover dozing. It’s supposed to be a 9 and a half hour journey to Zurich but only 2 trains and after the 18-hour epic I took from Bodo to Oslo it’s not too bad. At Hannover I get a much-needed coffee while I wait for my next train direct to Zurich. When the train, 20 minutes late finally arrives it turns out it’s not direct to Zurich anymore. The train they sent instead is smaller than it should be and all the reservations are void. People are standing along the corridors looking fed up and cramped.

I find a small space on the floor between two seats in the bike area. All things considered, having a patch of floor to sit on is pretty good going. Often situations like this bring out the best in people and despite the cramped conditions and the rapidly increasing delay on the train, I enjoy the journey. I make friends with a Swedish man with his two kids who are also interrailing across Europe and a French lady heading home. Me and the two adults chat for a while shearing travel stories and desperately trying to understand the announcements the train crew are giving.

After an hour or so the Swedish family start playing cards and soon me and the French woman join in. We sit on the floor getting in the way every time anyone wants to get down the carriage, the only people to be enjoying the journey. We play games till the French woman leaves for her connection and the train empties out. When they leave, after 5 hours together the young Swedish girl gives me a massive hug and looks sad to be leaving. It feels nice, it could have been hell but we made the hours pass and enjoyed each other company.

It takes 2 more trains to reach Zurich and I’m glad for the couple of nights rest I get there. I stay with one of my Mum’s friends and marvel at more sharing a room with other people and being able to wash all my clothes. It’s a perfect oasis of calm after 3 weeks on the go.

My train to Munich is a calm affair, I sit knitting for most of it. I reach the city and make my way to the hostel-come-campsite that I’m staying at. I meet people on the bus to the hostel and get chatting with Gillie an English girl interrailing for a month. I check-in, pitch my tent then buy dinner. The whole place has a very friendly and relaxed vibe to it and I chat with Gillie for a while before joining in a card game and not getting to my tent till almost midnight.

My tent was an emergency amazon buy and not the best one I’ve made, it has some serious flaws, such as breathing at all causes condensation to run down the inside and soaking you as you sit up or more importantly your down sleeping bag. While I’m comfortable on the floor with my mat and bag the tent is making me nervous and with the heavy rain promised for the next few nights I move into indoor accommodation, a giant tent with 200 beds in it.

After sorting waterproof accommodation I head into the city and mett Gillie for lunch before going on a walking tour. The guide pisses me off when he tells us how much to tip him at the end. Most of the time there is an understanding that young people traveling around tend to be able to afford less than older people on holiday. His attitude puts my back up and I enjoy the tour less because of it.

In the evening a large group of us play cards, I lose badly at cheat and by the time the rest head into town am ready to go to bed. I don’t sleep much though, a room with 200 people in is hardly quiet and the next morning I get up unrested. I go into the city but am too tired to enjoy myself so head back to the hostel for a nap. I know I have pushed too hard and need to rest.

The next day I leave Munich for Prague. I find a carriage on the train and am joined by other young travelers. We chat happily talking about our respective trips and then laps into silence reading, writing, scrolling through phones. it’s a nice mix of social and relaxing until two very loud women join the carriage, they are a part of a big group and sit watching videos with very loud audio and drinking what looks like champagne. There is a collective sigh of relief when they leave.

Prague has been really built up as a totally amazing place and I feel a little underwhelmed by it all. It might be because I’m tired and it’s the 6th city I’ve visited but I don’t fall in love with the place. Yes, the buildings are nice, and the castle is very impressive. The astronomical clock is cool but it just feels like another city in a long list of them.

I’m also exhausted and need a break from sightseeing. I can feel my body crying out for rest and know I need to stop if I’m going to carry on enjoying the trip. I’m 2.5 months in now. I can afford a little me time.

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I hope you enjoyed the week’s story,

With Love,

The girl with the braid in her hair xxx

Week 9: Flying high

After a week of spending most of my time on my own, I was really needed some human company. Traveling to me is about seeing new things, meeting new people and coming out of my comfort zone. I was managing two of them easily but a week almost solo somewhere I didn’t know had left me wondering if the best part was now over,

Gdansk is a lovely little city, steeped in history and an easy place to spend time, but the best part was at my hostel there were people who wanted to talk. It wasn’t the best hostel I have ever stayed in, but it was friendly. I spent my time in the city on walking tours and visiting the war museum. I made a friend and on my last night, we walked around the local supermarkets, giggling like crazy, on the hard task of spending my last zloty coins, a full 3.69 of them, about 78p in UK money (I managed to buy food to make lunch for my train).

My trip to Berlin was an easy one, I had to get up at 6am, but I had hardly slept due to the noise of the traffic and people having sex in my dorm room (WHY???). I had an old fashioned train compartment to myself most of the way and was able to sit with my music and knitting, enjoying watching the forests pass by.

Berlin is somewhere I had always wanted to visit. As a kid, the second world war was one of my main interests and I studied the cold war in history at school. I have always been a bit of a history nerd and so I couldn’t travel through Europe without going to Berlin. I wasn’t sure what to expect with the city. I have been told lots of different things, (it seems to depend on who you talk to whether you hear about the amazing history or have ideas hinted at you about the subcultures).

I was maybe expecting somewhere a bit like London just with ex-soviet architecture in one part and modern glass buildings in the other (I have no idea where that idea came from, an autistics mind view on capitalism versus communism). But as I am notoriously bad at picturing new experiences in my head it wasn’t a surprise that the picture I had was drastically wrong. Yes, there is a lot of communist housing blocks, especially in the area I was staying in but within the time I had walked from the train station to my hostel I was starting to get a feel for the place.

I enjoyed the history of the city, I enjoyed walking about the place. I saw the Memorial to the murdered Jews and the Berlin wall. I went on a couple of free walking tours and museums but the best thing about the week was the people I met.

There was always someone to talk to and people were always inviting me to do things with them. Often I like to go out during the day on my own, not having to worry about what anyone else wants to do is a freedom in itself but I enjoy human company too and so having people to interact with when I’m back in the hostel is important too. In Berlin, I had the perfect mix.

On my first day, I went out with Lillie and Gabriele, two girls who were volunteering in the hostel, they taught me the rules of the public transport system as well as being good company. Most of the people in the hostel were partying at night, not my thing, but as most of them didn’t go out till 10sih I never felt like I was missing out.

On my third night, I went out with Lillie and Gabriele and some other guys staying at the hostel. The falafel place we went to was in one of the cheaper districts that I never would have gone to on my own. We sit outside chatting and eat a huge amount of food for hardly any money. Afterwards, we go to a bar. I don’t go out much. It took 8 months for me to start going out some Saturdays after work and I have never gone out in a city I didn’t know well.

It’s an amazing feeling. This confidence that I find when I leave the bubble of home, when I’m in places I’m not afraid to be myself. We talk about as we walk, for me, it’s much easier to be confident when I’m traveling as all the relationship with other people are short term. It doesn’t matter what people think of you, if you get on great, you might even stay in touch and see each other again but if you don’t who cares, you will go your separate ways.

That night I’m up till 1am, chatting with people and feeling free. I’m full of joy and last weeks loneliness if left forgotten.

For my last night in Berlin, Lillie and I have a sleepover in the hostel lounge, one of the guys in the room snoring really loudly and I was up for several hours the night before due to the noise. We both have to be up early to catch trains and need to sleep so obviously stay up chatting for ages and giggling together, it’s like something out of an American teenage girl’s movie and we both love it.

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I hope you have enjoyed this last episode!

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

 

When the light goes out.

Things were going well. Better than I could have ever expected. Life seemed so easy so full of joy and anything seemed possible. I was riding one of the best highs of my life and it seemed like it would never end.

I was busy and life was full. Working more, doing more when I wasn’t working and frantically trying to finish off my second pair of knitted trousers so I could wear then on Christmas jumper day at work, the one day of the year I was allowed to turn up in full knit.

I finished the trousers at midnight on Thursday, 12 hours before I needed them. On Friday morning full of joy and feeling like I was floating on clouds I got up early to source some bells that I could stitch to myself to complete the outfit for the day.

For all of Friday, I bounced, jumping up and down to jingle whenever anyone else in bells walked past, I don’t even like Christmas normally but for that day everything seemed good. I finished work at 9pm jokily asking if I could sleep on the benches as I would be in again at 9 the following morning. The run-up to Christmas when you work in a shop is long. Maybe too long.

I woke on Saturday morning not wanting to get up, it felt wrong, we needed to be in an hour early and that felt strange. I got to work not in the mood to boot fit. Normally for me once I am there I feel like working, it doesn’t normally take me long to slot my head into work mode pull on a smile and for the most part, enjoy what I’m doing.

I made it through the first fit but in my head, things weren’t right, I ignored it and pushed on. The second fit felt the same and despite the fact I was trying so hard to feel like me I couldn’t seem to find the girl I had been the day before.

I got a break from customers, I was at snapping point all my self-control was gone and so when I was told I could go for lunch I fled. I knew I needed to get out. Everything was too much and I couldn’t hold things in anymore. I practically ran out the shop rain quickly started to soak through my down jacket but I didn’t care. I bought food and then wandered around for a while trying to bring back control. I had snapped at people in the staff room and knew there was a high chance someone would ask questions, it was so unlike me but I had needed to get out and didn’t want to break down in front of everyone. The closer it got to the end of my lunch hour the tighter the knot of anxiety became. I knew I had to go back but the thought made me want to curl up into the smallest ball I could become and cry until I could cry no more.

I made it back to the staff room without crying but just being in there was too much. I sought refuge in the workshop, planning to finish my coffee and try to pull myself back together enough to work. But once I was safely hidden sitting in a nest of dust I could hold things back no longer. The tears came and with them great sobs. I tried to control it. I didn’t want to be heard but it doesn’t take long in a busy shop to be found. Lenka came to drop off some skis and found me crying. She sat with me a little while to try to help but I could hardly put into words how I felt. This wasn’t just stress or burn out from work.

I folded myself into a small bundle of misery and cried some more. A few minutes later I sensed someone sitting down in front of me and hands on my back. Feeling another human being help, I sat up, Florrie smiled at me. I cried some more. She didn’t try to get me to stop. I was so full of feelings, it felt like was suffocating and exploding all at once. I needed to get them out, all of them out and I only know two ways of doing that, the first I used most as a child inflict pain on myself. The second is to scream, to push everything out in loud and desperate wails. Neither is good. One is quite but not recommended the other loud and hard to hide from people.

But when I flapping my hands about doesn’t work and I needed to get it all out and Florrie gets up and shuts the door and tells me I can scream now. Normally I have hidden this side of me from other people. I try to only fall apart when I am alone, but I feel nothing but compassion as I curl up and force the feelings out of me in long bars of high pitched noise.

Florrie sits with me while I start to calm down again. I’m grateful, people don’t have to care or help. But seeing them care makes me feel less alone and less like a nuisance.

It is clear I am unable to get back to work, even once I have calmed down when I am asked how I am I start to cry again. I am told I can leave early, we are not busy but I don’t want to go home, Florrie suggests Hampstead heath, at first I am not sure, it’s dark and while I have been there before it was a long time ago and I don’t know how to get there, but I need to get out of the confines of the city and so after dithering I decide to go.

I get lost when I go the wrong way out of Kentish town tube station but do find the heath. The rain pours down and in the dark, there are few people out. I walk and feel things getting better inside me, with no one around and the cold and the wet on my face I feel like I can breathe again. I walk and walk no idea where I’m going unable to see much but steadily feeling better I start to run then jump in puddles laughing and shouting into the dark. I feel like me again.

I walk until my head tells me my blood sugars are getting low. It’s annoying right now I would love to be free of the constraints that diabetes brings, but I find my way to a road and jump on the first bus I find. I have no idea where I am. Being lost oddly feels good, I ask the couple sitting behind me where I am and where the nearest northern line tube station is. Luckily the bus will take me there and I sit and eat to bring my sugars back up again.

I decide to go back to work, it feels too early to go home and there I will be able to dry off a little. I also don’t want to leave it till Monday to go back, I know that would only make things worse.

I get back to the shop and grab some ski pants that we have to lend out when customers don’t have the right clothes on and some socks from the basket and change. I warm up and dry off and am able to have a chat with my managers all of which helps.

I had hoped that the outpouring of emotions would be enough, I thought that exercise would do the trick but when after spending the Sunday on my bike in Richmond park I didn’t feel any better I knew this wasn’t just a meltdown. My whole body feels heavy, everything someone asks me if I’m ok I start to cry. The lightness and joy I had been feeling have gone and everything feels hard. I know these feelings I have felt them all before. I know what they mean, my depression is rearing is ghastly head again.

These feeling are hardly new to me, I have been fighting with them for over half my life. I know how far I can sink and how fucking hard it is to get back again. But I also know that at this stage there are two ways to go. I can sink down and reach a point where I don’t even want to fight it where things feel almost impossible and just getting out of bed and getting dressed is like climbing a mountain. Or I can react while I still have control and take myself back to where I want to be.

Thankfully I can recognize things quickly enough now to do the later. A few years ago I would lose control but I know I won’t this time. I have fought too hard for too long to let myself slip again. I have fought my whole life against my autistic brain, bullies, depression, diabetes, chronic fatigue syndrome and to pressure and constraints of society and I will not lose that fight now.

I have taken antidepressants for a few years now, this summer I was able to reduce the dose but now I know I need more again. I am able to phone the mother of one of my best friends who is a doctor on Sunday night to make sure that it is safe to do so and that night I go back up again.

On Monday morning on my way to work, I am able to make an appointment with a Doctor, my GP from the last 4 years has just left the surgery and so I will have to start afresh, it’s not good timing but I will cope.

We are busy on Monday morning, it helps when I don’t have time to think. I don’t feel myself but I do feel better for working. From 10 I work through to half 4 before I’m able to take a break. I go for lunch but once I have eaten I feel wrong inside, not I am no longer doing things the feelings I have put aside come clawing back in. I have stuff to do so I go back to work.

Things get too much again but I am able to talk it out and pull myself back together. I know it will take a little while for things to get back under control and until then emotions will be taking over every now and again.

At times like this, I wish other people could feel what it is like to be autistic, to know what it feels like when your headspace is simply wrong and how such small things can cause problems. I have learned to successfully hide most of my autistic traits but it doesn’t mean they aren’t there. When I am in control I am able to rationalize things to myself to help keep the peace in my mind but when I am struggling I need structure and order more. I need plans and predictability, without that I struggle to regain control.

On Monday night I tell my mum what is going on. It feels good not to have to try to hide it like I always did before.

But despite it feeling like the light has gone out I still feel lucky. There are a lot of people around me who care and want to help. And the kindness of others makes it so much easier to carry on. I have been here before and I’m sure I will find myself here again but for now, I can take comfort because even though I am not myself this shadow girl will leave and the one I truly am will come back again and while I wait for her to return I have people around me willing her back too.

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The day before I crashed.

Sometimes I write because there is something I want to share and sometimes it’s because I need to get feeling on to a page to make them seem less overwhelming. By writing this I am helping myself but I am sharing it because I believe it’s important to talk about mental health especially when things start to fall. I hope that for those that don’t know what it is like this gives a bit of an idea and for anyone who knows these feelings as well as I do it reminds you you’re not alone.

Please feel free to share this if you want to,

With love,

The girl with the braid in her hair xxx