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

 

Those pesky things called feelings

CFS isn’t an easy thing to live with. I guess that’s not really all that much of a surprise. Having a body that doesn’t seem to want to function in the way it should is never going to make things easier. Losing my independence wasn’t easy either. I had always thought that when I left home it would be for good. The idea of going back was never considered, even when I got ill in Canada I knew I would be able to cope on my own.

Leaving home gave me the space I needed to come to terms with a lot of things. It allowed me to stop being angry and start to understand why somethings had happened the way they had. I’m autistic. It’s not a big deal, not anymore. I’ve learnt to understand what it means for me and for other people around me. It’s all I know and I wouldn’t change it for the world, but that doesn’t mean it made growing up easy.

Misunderstandings made me fiercely independent at quite a young age. For a long time, I believed the only person who could look after me or understand me or even like me was me. Growing up feeling different, wishing that for just one day I could be like everyone else, hating myself for not being able to understand other people took its toll. It’s hardly a surprise I have had depression for over half my life.

I don’t want to dwell too much on the past. Those things happened a long time ago. I’ve come to understand why they happened, and I don’t blame anyone, not anymore. Shit happens, it’s a fact of life. There is no point trying to find someone to blame or holding on to anger from the past.

I do sometimes wonder what my life would have been like if I never got ill. If I had been able to run as far away as I wanted too and not look back. Would I be happy? Would I have forgiven my past? Would I be in contact with home? I don’t know, but as harsh as it sounds I don’t I would be.

I don’t believe in fate, or that things happen for a reason or anything like that. I believe in people and in making the best of things. I believe in not giving up and looking for the good in every situation. And I think I have got quite good at that. Sometimes I worry that I have got too good.

Since getting CFS I have perfected my ability to smile when I really want to scream. I have become an expert at telling people I am fine and wittering on about all the good things because I know that’s what they want to hear. I don’t like to admit when I’m struggling. I don’t want to pick up the phone and just cry because life isn’t fair and I’m fed up. It doesn’t seem fair to subject anyone else to that.

And often getting overly upset about things doesn’t help me either. I know it’s important to allow emotions to come and be felt, but I also know dwelling on them just makes things worse. As much as I don’t want to subject other people to me when I’m upset, I don’t want to let myself feel that negativity either.

I hate the feeling of falling apart, of not being able to cope. I have always been proud of my ability to cope with shit. I have always seen it as a strength but maybe it’s not. Remaining positive is one thing, forgetting that it’s ok to not be ok is another. And recently I think I have been forgetting.

I know why, I’m scared my depression will come back. I have been able to enjoy almost two years of feeling good and being happy. Something at one point I didn’t believe would ever happen. And when I tell myself I’m happy, things feel ok. When I push aside the uneasy feelings and paste on a smile, I can kid myself into believing things are good.

But sometimes it’s not. Sometimes I do need to cry. Sometimes I need to let myself no be ok for a few hours. Sometimes I need to pick up the phone and cry. I need to remind myself it’s ok to not be ok.

It’s not an easy thing to do. I have to psych myself up for it. One of the things about being autistic is emotions come all at once. I’m either fine or totally overwhelmed. And the feeling when too many emotions are coursing through me is horrible. There is often a physical pain. I feel like I am drowning in feelings and I just want to push them out. This is why autistic meltdowns often are loud and violent. It’s also one of the reasons I’m so keen on being fine all the time.

But recently, I was able to get it right. I knew the feelings where coming, I had that uneasy feeling in my stomach which is my early warning system. A red light was flashing and I knew unless I did something soon I was going to implode.

So I did the thing I hate to do. I picked up the phone and I cried. I talked to one of my best friends about how I felt and she listened. I put my pride to one side and admitted that it’s sometimes necessary to let those pesky emotions come out. And I felt better for it. We talked and I cried until we talked and we laughed. I knew what I needed but I have always been scared of reaching out and asking for it.

I knew what I needed but I have always been scared of reaching out and asking for it. I don’t really know why. If one of my friends was upset and needed to talk to me I would want to be there. But for some reason, I feel bad about asking it of them, even though I know they don’t mind.

It’s something I’m working on. Something I know I need to do. CFS has taught me a lot but also made me forget a few things. Now I’m getting better I need to start remembering them again.

sarah and the rest

sarah

Sarah, who will always make me laugh even when I’m crying

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Me and Naomi whos one of my oldest friends

I hope this makes sence, it made sence to me when I was writing it!

With love,

The girl with the braid in her hair xxx

Road to the river

I have always been active. For years I climbed competitively, training 2-3 times a week. I walked everywhere. When I was bored I would go out for 10+ mile walks just the pass the time. I have always been happier outdoors.

So when the CFS meant I was too tired to exercise and even go for a long walk I felt trapped. I remember the first six months I was in London. Having moved from the wide open spaces of the Highlands, London was a claustrophobic prison. My mental health suffered badly. For a long time, I have known that I need to get outside and exercise if I am to keep my depression at bay. The meds have worked wonders but exercise, the outdoors and social interaction are even more important.

But how do you exercise when you have no energy? Where can you get outdoors in such a crowded city? How do I make friends when half the time I’m too tired to manage a sustained conversation?

The less I did the more trapped I felt. My world had shrunk to such an extent I didn’t think it would ever open up again. All the things I used to enjoy I could no longer do. What was the point in even trying, when I knew I would just end up exhausted and not able to leave the house for a week?

Due to having depression I was sent on CBT (cognitive behaviour therapy) course. Most of it was pretty self-explanatory. I taught myself the basics using common sense when I was a teenager, a distinct advantage of being highly self-critical but also being able to look at myself objectively. The one thing that did come out of it, however, was that I needed to stop making excuse to why I couldn’t go out and exercise and start doing something, preferably something that would get me outside and interacting with other people.

Climbing would have been my first choice, I have climbed since I was a kid, but I was having problems with my hips and climbing was really painful so I needed to find something else. I had kayaked when I was younger but had to give it up so I could climb more. It was something I had always enjoyed so it seemed like a good alternative.

Having only recently got to London I didn’t know any places where I could try kayaking but a google search soon pointed me in the direction of the Westminster boating base. Not only was it easy to get to it is a charity and so membership for youth member (which I was) was super affordable (£15 a year with everything you need included in that!) So I went to try it.

It was perfect for me. Sure I got tired after a session, I was always going too. But I was outside doing sport and with other people. Going up to the river every week made time pass more quickly. I had something to look forward too. I was making friends.

The hardest thing was not over doing it and leaving myself too tired to do anything for the rest of the week. I like to push myself, try new things, keep up with everyone who didn’t have CFS. Over the winter I learnt to roll. The sense of elation when I got the boat upright for the first time was one of the best feelings I had had that year. It was a true achievement. It wasn’t something I had to tell myself was good because of the CFS or anything else, I had learnt a new skill and I was excited by that.

I went every week no matter what the weather was like. The days it had to be cancelled due to poor water quality (the Thames isn’t known for its crystal clear water) I would find my mood dipping. I need to kayak.

I could talk about the skills I’m trying to learn, the fact I managed my first (almost) stern squirt the other day but that will mean very little to most people. I enjoy learning the skills, but I often find the line between pushing myself enough to learn and overdoing it a hard one to walk. But there is more to it for me. Kayaking is where my friends are, it’s something I can do that lets me feel the power of nature, something that can be hard to find in such a big city. And my progress over the last 2 years in a boat is showing me how far I have come with the CFS.

If kayaking has taught me anything it’s that I still can do the things I love. Now I’m getting better I can look forward to the day I can try whitewater and river running. I know that in the not too distant future I will be able to keep up (ish) with my friends and play as hard as they do.

For me kayaking isn’t just about having fun in a small boat, it’s my social life, the place I go the spend time with other people and get chased by massive river boats when we get in the way of their pier’s. It’s a break from my everyday routine and a chance to let my hair down and have fun. If anything in the past few years has helped me come to terms with and start to beat my CFS it’s kayaking.

kayaking

Bridge climbing

 

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playing in a boat that fits

 

I hope you enjoyed reading this. Maybe you want to give this great sport a go as well? As always if you want to give me a helping hand and spread the word, please like and share on social media!

With love,

the girl with the braid in her hair xxx

 

Wouldn’t change it

There is a feeling of optimism that doesn’t seem to want to leave me. A feeling that makes everything seem possible. It’s a welcome change after two years telling myself I wasn’t allowed to feel helpless, even if I really did. Now my eyes are wide open, I’m looking out at the world, wanting to make my way back to it after too long away.

But to part of me all this feels strange. I not living how I would want too, yet I am happier than I can ever remember being. I still spend the vast majority of my time alone and yet I feel connected to others around me. I have changed more than I ever thought I would. I am happy and confident. I smile easily, I laugh and dance and sing.

It’s hard to think of things like CFS and diabetes as a good thing. It has taken away my energy, my ability to live independently and my dreams of traveling, for the time being. It has made me leave a place I love, to live in one I find overly busy and chaotic. I miss my simple life, surrounded by mountains and lochs. I miss the silence in the glens as I peddle through them on a deserted road. The beauty and the stillness. London has none of these things and yet, for now, it’s home.

And I don’t mind, not really. I have friends here now. It may not be stunningly beautiful or quiet or simple, but it’s my life.

It’s my life in the same way CFS is. The way all the changes I have had to face are. It’s funny. If someone had told me before I got ill in Canada, that I would be diagnosed with diabetes and then eight months later get CFS and not wish with every fiber of my being that I could go back and not have to get ill, I wouldn’t have believed them.

But I wouldn’t change my life for anything. Having to come back to the UK when I did meant I had to face reality. I had little intention of having any kind of relationship with my father when I left for Canada. But after I had settled back in Scotland, my feelings towards him kept playing on my mind.

I was angry, I had been for years. Angry that he didn’t seem to get me or even at times try to get me. Angry that he had made me feel cold and unloving. Angry that when I was with him I never felt like I could be myself. The only feeling I had towards him was anger. It was all consuming. He had hurt me, both my parents had hurt me and part of me wanted them to hurt too.

But I was growing up, I was learning how to look at things with other peoples perspective, something that is really hard for autistic’s like me. I knew they had never meant to hurt me. They had never meant to make me feel the things I had felt. They had made a mistake and I believe in forgiving people their mistakes.

I also was becoming aware that the anger I was holding on to, was stopping me moving forward. I had to let go. I didn’t want to be angry anymore. So I made myself forgive him. It was hard but it was worth it. That anger that I had been carrying around with me for years melted away and I was left with a strange lightness. And when the CFS meant I had to move back in, I was grateful we had made our peace.

Before I got CFS and diabetes I had believed the only thing that could hold me back was my mindset. I am easily spooked. I find new experiences scary but also exciting. I knew I didn’t want my fear of things to get in my way. I knew I had to push myself and I did. But I did it with out really thinking. I pushed but I didn’t address why I found things scary. I wasn’t able to look critically at myself and get to the bottom of why I felt the way I felt.

I know this was partly to do with the fact I was still young. I wasn’t diagnosed with diabetes till I was 19. But I knew if I was ever going to move past the fears I had to understand why I felt them. These things that take time. When your working 45 hours a week, seeing friends, buying and cooking food and all the other things that you have to do when you live independently there is less time for thinking. Less time for understanding yourself. I had got started. I had a much better understanding of being autistic and my depression and how to deal with it, then I had when I had first left home.

Having everything I had known stripped from me made me look at things in a different light. I was no longer able to do the things I loved. I felt trapped in my own body. There was so much I wanted to do that I couldn’t. It was hard to face. It felt like I was drifting through the world with no purpose at all.

It took me a while to get my head into the right place. I went from dr appointment to dr appointment hoping one of them would tell me what was wrong with my body. It was hard to process my new life without knowing what was wrong. But once I had been put on the right track things got easier. I wasn’t happy with the way my life was going but there were things I could do about it.

I made changes. I started kayaking every week to get myself our the house and start to re kindle a social life. I began losing the weight I had put on after being diagnosed with diabetes and starting on insulin. I stopped blaming the world and started to look for the good things. I reminded myself that you have to choose to be happy, you can’t just wait and hope.

A year after getting ill I woke up with and idea for a story. When I was ill in Canada I had made my first attempt into novel writing but now I had a real idea. I threw myself into it. Writing became my main priority. I felt like I had a purpose again. I fell in love with writing. I never really knew what I wanted to do with my life but I soon realized I wanted to write. There was something about immersing myself in another world and channeling my characters thoughts and feeling that made me feel alive in a way nothing else did.

Despite my situation I’m happy. Everything has changed and sometimes it is hard but for the most part I am happy. I have learnt how to be happy even when things aren’t going my way. I know mindset is far more important then situation. And I have learnt things I didn’t even know I needed to learn. Even though it has been hard. Even though, at times, I have cursed my luck and wished with all my being that it didn’t have to be me, I wouldn’t change it for the world.

 

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me and my little cousin at my cousins wedding

 

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with love

the girl with the braid in her hair