Brighton on a tightrope.

It’s funny how fast the year seems to be moving. Everything rushing forward just to be repeated again the next year. I like to think by this time next year things will be different. Trump will still be president, we will still have terror attacks in our citys and we will still be talking about how the world seems to be crashing down on it’s self. But I like to think I will be better.

I want to believe that my body will work how it should, that I won’t have to limit my writing to only 30 mins a day. I want to believe that I’ll have my energy back.

I know things are getting better. I know I am miles from where I was at the start of the year but there are times, my quiet, slow moving life still frustrates me. I want to be able to keep up with my friends. I want to have more of a social life. I want to be out in the world, able to enjoy it. And sometimes, the closer I feel I am the more I miss what I used to have.

Thoughts like this come more often when I break away from my normal routine. I have become used to putting my recovery before enjoyment. I’m used to thinking everything I want to do over and making sure I don’t over do anything. Everyday is carefully managed so I can keep going at the same level the next day and slowly, slowly creep forwards towards my end goal.

But sometimes I need a break from it all. I need to let myself feel like a normal 22 year old. I need to spend time with my friends and have fun, even if that means sacrificing a week or so’s recovery.

So, when one of my oldest friends was finally back in the UK, after gallivanting around the far east and we wanted to meet up, we decided to spend a few days in Brighton, instead of meeting for only a few hours in London.

I shopped about to find a good priced hostel room and managed to find us a private double room for only £20 each a night which was the same as what we could of paid to share a room with strangers. I was glad I could find a private, as much as it’s nice to meet people in hostels, sleep was higher on my priority list this time and Lizzie being my only room mate would make that easier.

We met in Victoria station. Despite having not seen each other for almost 2 years we immediately fell into the easy friendship we have always had. We have both changed a lot but that doesn’t seem to matter.

We settled down to a picnic on the train catching up of the past two years. There is always a lot to say when you haven’t seen someone for a long time. We reached Brighton in the early afternoon and after some slight confusion, due to me writing down the wrong road name we found our hostel.

I was tired by the time we got there but didn’t want to say anything. It had been so long since we had seen each other I didn’t want to put and damper on things by being tired. We headed out again and took a walk along the beach front, eating ice cream and talking all the while. I love being by the sea. I love the power of it. I can’t really put it into words but the majesty of the ocean is one of those things I truly love.

Brighton has a big tower-lift-sight platform thing. It takes you about 200 meters up and is all glass so you can see all around, over the water and across the south downs. By the time we had walked up to it I really wanted to stop and rest for a bit. It had already been a long day and I could feel the earlier excitement starting to catch up with me. But I didn’t want to say anything.

When I’m with other people I am so aware how annoying it must be for them to have to do things and my speed. Even when I’m trying to keep up I can’t really. I tire out and become sluggish. Everything becomes hard till I can hardly have a conversation. I try to avoid getting to this stage because I know its bad for me and it’s not fun for the person I am with, but if I am to avoid it I have to take things slow, which I feel bad about doing when I’m with other people.

I needed a break but the capsule thing was just leaving and Lizzie didn’t want to hang around for half an hour waiting for the next one so we carried on walking. We didn’t get that far before I got too tired so in the end we turned around and ended waiting for the next one anyway.

It was a nice break. A chance to stand still for a while and watch the the world as we came up and then down again in a space bubble.

We then headed back to the hostel and then out for dinner. We spent the evening playing manopaly and when to bed at a reasonable time. We chatted as we lay in the semi darkness. Questions and ideas seem to come just before sleep and it was a chance to talk about things in more depth than we had done during the day. It was nice to lie there sharing ideas and thoughts. We have known each other so long but it’s rare you get a chance to properly dig into things.

Lizzie had got up and gone for a walk and was on her way back again by the time I was ready to get out of bed. We ate a quick breakfast before going out and exploring the Brighton museum and the royal pavilion. There was quite a lot to see, I always enjoy walking round historical places. My brain wasn’t 100% so I didn’t pick up everything there was to see but it was good.

We headed back to the hostel for lunch and then I asked if we could have a quiet hour. I knew I needed some down time before we headed back out again.

I felt a bit bad for needing a rest as we were only in Brighton for 3 days but at the same time I knew if I didn’t I would really struggle later. I know people understand that I have to take things slowly and do less then I’m used to but I don’t like to make a big deal of it. Normally when I’m tired I can lie down for a bit or watch mindless TV but I feel pressure when I’m with other people to keep going.

After the rest we went and explored the area called the lanes. It’s a small area with narrow streets, antique shops and food places. We judged all the jewelry in the windows and explored a second hand book shop. I always enjoy wandering round new places an while I’m not really into shopping it’s nice looking into the windows and wonder who would spend so much money on a small rock.

I hypoed so we stopped for a tea and cake break in a small cafe. Unlike when I need to stop because I’m tired, I never feel bad about asking people to stop because my blood sugar is low. It’s not like it’s any less inconvenient but I suppose it feels easier as it’s governed by set rules. When you are below 4 you need to eat, there’s no way around it.

Once we finished the lanes we headed to Brighton pier. It’s a total tourist trap but you have to go and I love the penny arcade. I played on the 2p machines, Lizzie watching and cheering me on. Then we headed to the end to look at the rides. I know these things are super expensive but there was a super tall spin you round one, right at the end of the pier and I just had to have a go.

I’ve always loved the feeling of falling, with the wind in my hair. Sitting facing out to sea before slowly tipping backwards and seeing the pier and the seafront upside down before arriving upright again, was almost relaxing.

After a busy day we where both tired, so we found somewhere for an early dinner before heading back to the hostel for a night playing cards in our room.

The next morning we had to be out the room by 10. Again Lizzie got up and went out while I slept till half 9. She came back and I got up, we packed up our stuff, checked out and went for brunch at a bakery.

We had some time to kill so we went back to the penny arcade for a bit before heading up to the station.

It was on the walk uphill to the station that I knew I had over done it. I was so tired all I wanted to do was curl up and sleep. Lizzie was still chatting but it was hard to join in. I wanted to be able to make the most of the last few hours but I was simply too tired. I had the horrible drained feeling that can’t be push through.

It was frustrating. I had tried so hard to be careful with my energy so I could enjoy all of the trip but I had failed. I was annoyed at myself for not doing better but also I had been hoping that with all the improvements I had been making that I would be able to handle 2 nights away. It was hard to see that I still couldn’t manage even for a short period of time.

But even though I was exhausted I had enjoyed myself. It was such a nice change to be with someone for a sustained period of time. I had missed going away. Pretending for a short while I was like other 22 year olds. I knew it would be a balancing act when we had decided to come. I had hope I would have managed a little better but I can’t really complain. I am getting my life back, just a bit slower than I had hoped.

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Love,

The girl with the braid in her hair.

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

Canada. And back again…

I was diagnosed with diabetes on the 14/4/14, three years ago today. This is how it happened. (I don’t recommend this to anyone!)

My trip to Canada was supposed to be about getting away from home, skiing lots and having fun. I thought it would be easy. I thought I could handle everything that life threw at me. I was determined to be independent at last.

So when, I got shingles due to stress over Christmas I tried not to make a big deal of it. The things that bugged me most was that I had to call in sick, something I had never done before. The illness itself wasn’t fun but being young I got off rather lightly. When I had to move flats for the third time I just hoped I would finally be somewhere I could settle and be happy. And when I hit a bad depressive episode I allowed myself to take advice and get help.

It took me a while to settle in but eventually I was happy and settled and staring down the end of the season. I thought I had things sorted. I was working well, had made friends and had saved up a bit of money.

I went on a trip to Vancouver on the 25th of March. It was a trip to try out curling (sliding granite rocks across ice trying to score points), and I was drawn to it as I happened to be named after the island that is made of one of the two official granite that are used by the sport. It was a good day out. The people where nice, I only fell over a few times and as it was a holiday of sorts I allowed myself to eat what ever I pleased, so went on an all out sugar binge.

The next day I was off work. I was exhausted. This wasn’t unusual though, I seemed to be needing a lot of sleep. As I had no one to ski with, I stayed home to make a card for the girl I had been teaching every Sunday for the past month and a bit, as it would be her last lesson at the weekend. She was an amazing kid and I wanted to give her something to say thank-you for all the fun lessons we had had together.

I was working on her card when I started to develop a headache. I tried to ignore it but as the day worn on it got worse and worse. By the time I went to bed I was in too much pain to sleep. The night did nothing to help and after tossing and turning all night I had made the decision to call in sick. I thought it was a migraine and I had a Doctors appointment on Thursday so I thought I was best to stay at home till they told me how to fix it.

I was in a lot of pain and really tired. Watching TV hurt, as did reading. I was board and fed up, desperately trying to find something to occupy myself with. I’m really bad at just sitting still with nothing to do and I wanted to take my mind away from the pain if I could. I have always been a chronic daydreamer, but I find it hard to dream effectively with out doing something else at the same time. So I decided to have a go at writing it down instead of just thinking it. This seemed to work and I got through to Thursday by writing and resting and trying to ignore the pain best I could.

When I saw the Doctor I was confidant that she would tell me it was a migraine, give me some meds and send me on my way. But she didn’t. I explained what was going on and the one thing she was sure of was that it wasn’t a migraine. She was a bit confused so gave me some strong pain killers and told me to come back if it didn’t go away within 24 hours.

The pills helped but as soon as they started to ware off I was in pain again so I made another appointment. I saw a different Dr. she wasn’t sure what was up either so sent me to get my eyes checked and them to go back and see her and also signed me off work for the next few days as I was still in pain and was starting to find things like going from standing to crouching, was making my head spin.

When I saw her again two days later it was like my body was starting to shut down. The headache was finally leaving but I was constantly light headed and I was starting to find basic things like walking hard work as my balance seemed off. She made me do a few neurological tests where I proceeded to poke myself in the eye as I aimed for my nose numerous times and generally made a fool of myself.

I was trying to take it all in my stride. I was telling myself it would all be ok and what ever would come would come and I would be able to cope with it. I had this feeling that I couldn’t get rid of that this was serious and what ever it was, it was going to change my life. But I didn’t tell anyone I was feeling this way. I didn’t want to seem like I couldn’t cope.

The Dr mentioned that if it kept going I was going to need brain scans. She said it might be a virus but it was unlikely and as I didn’t have much money she wasn’t going to do blood tests as they were unlikely to show anything. It was scary the way money was making the decisions. I had already spent a good chunk of my savings and wasn’t working so I couldn’t afford the blood tests, just seeing the Dr cost the same as a days wages.

I went home still telling myself that I would be ok. I kept my mind distracted from what was happening with writing. But when ever I stopped I wondered what was happening inside me. I knew it was more than I could manage on my own but I had hardly been in contact with my parents for the past couple of months. I had been angry when I left home. I needed space from them. A chance to figure things out. I wanted to be independent, to prove I didn’t need them.

But I could hardly walk, my travel insurance was running out at the end of April and I could hardly walk or do anything for myself. I knew I needed to get back to the UK and the NHS. I didn’t want to phone my mum. I didn’t want to admit I needed help. But I wasn’t sleeping and I knew this was more than I could manage alone.

It took a few days umming and ahhing for me to pick up the phone. My pride told me not to. Common sense told me it was the only thing to do. It felt like giving up, admitting weakness. I was not used to asking for help, I didn’t like admitting I needed help especially help from my parents. But I called her and I cried and when she asked if I needed to come back to the UK I said I did.

By this point people where starting to do all they could to help me out. A friend with a car was driving me to the shops to get groceries as the walk took 4 times longer than it had because I needed to concentrate at every step and so was nearly impossible. I could no longer stand up long enough to cook and my flat was getting messy.

In the days before my mother came I got and offer of help from a friend in Vancouver who let my mum stay in her condo while she was in whistler. Another friend came and did all my washing up and tidied up the flat as I was unable to do much apart from sit in bed.

When my mum arrived I put on a smile and told her I was coping. Between her and my friend Alice my stuff was packed and room cleaned. I sat on my bed unable to help trying to be cheerful and optimistic.

The flight back to the UK was passed with the painkillers the DR had given me and my emotions only ran wild for a short while. Landing in the UK felt like failing an exam. I had been independent for 9 short months and I had failed. I couldn’t manage on my own and had needed help. Everything I had thought would happened when I left home had come crashing down around me. I resented the smile on my Fathers face when he saw me, the mattress on the floor of the spare room laid out for me and the reassuring quips sent my way.

I didn’t sleep much that night and the next day I got and appointment with the local GP. He repeated the neurological tests I had done several times by that point and I continued to poke my eye as I tried to go from my nose to the Dr’s finger held out in front of me. After he assessed me he looked to me and then my mum and said I needed to go to A and E and not to leave until I had had my brain scanned. He said he didn’t know what was wrong but he didn’t feel comfortable putting me on a waiting list.

As A and E can be busy and it was almost lunch time we headed back to the house to eat before heading back out to the hospital. Standing in the quew waiting to see the triage nurse my mum fretted that we wouldn’t be taken seriously. By this point I knew I was in more emotional control than she was so I pointed out we had been sent by a GP and I had almost 3 weeks worth of medical notes explaining why I should be here.

In the end she had nothing to worry about. I saw and experienced nurse who quickly assessed me and sent me though to reception to wait. Another nurse came and took my blood and we hadn’t been there and hour when a Dr came to take me through to a bed. She asked the many questions I had got used to by this point, re did the neuro tests and whet to see her superior. At this point mum was fretting again because we had been told not to let a young Dr tell us I was ok and refused to leave until I had been scanned and she was worried that this young Dr might do just that.

But she had nothing to worry about. The consultant came and assessed me again and ordered some more tests. I sent mum off to get me a drink as I was thirsty and had finished the one she had got me earlier. A nurse came and took more blood and fitted me with a canula and I went to the toilet.

The nurse came back to hook me up to fluids as I was dehydrated, which was odd seeing as I was on my 3rd liter of liquid that day. My mum asked what was going on but all the nurse could say was that I needed fluids. I had to get them to disconnect me so I could pee again and on my was too the toilet I hear the two Dr’s I had seen talking bent over a computer screen, all I heard was ‘young woman her blood sugars are 30, clearly diabetic’. But I knew they were talking about me so it was no surprise when the young Dr came in to welcome me to the club of Type 1 diabetics of which she was also a member.

I shrugged at the news, diabetes is better than a Brain tumor which was what I had been fearing it might be. My cousin is also diabetic so I knew a bit about it and knew I would still have a normal life just with added injections. But mum cried. I was admitted to hospital and later transferred to a ward where I got my first lesson in injecting.

This felt pretty surreal. Less than 2 days ago I had been in Canada and now I was being taught the correct way to stab myself. I listened carefully to the instructions I was given before taking the needle myself. Holding a syringe pointing at my tummy was weird but I knew I was going to be doing it for the rest of my life so I took a breath and stuck it in. Turns out once you have done it once its not that hard but it made mum cry again.

In the end I spent a week in hospital getting my blood sugars under control. My diagnose was a little on the weird side as I was missing several type 1 marker but I had to be started straight on insulin so they stuck with that diagnose. Talking things through with the Dr’s and nurse we worked out I had been ill for a while.

Before I had flown to Canada I had stayed with my parents in London for a week. I had come down stairs one day to fill my water bottle when mum said I was drinking a lot and did I know it was a symptom of diabetes. I had reasons that I was just thirsty but I went back up stairs and check the symptoms online and found out I had all of them. I told mum but we decided I couldn’t possibly be ill as I was so fit and that was the end of it.

But I had also been needing to drink about 5-6 liters of liquid a day and was eating about 4000 calories a day by the time I got back, without being able to put on weight. So it wasn’t really much of a surprise once it had been figured out. The important thing was there was no problems in my brain.

I don’t regret the way things happened in the end. I’m glad I went to Canada and had that experience, although I got very ill. In those few weeks I grew up. I learnt that the strong thing to do was accept that sometimes you need help and to ask for it. I ended up writing a short novel like thing, which ended up being my intro in to novel writing and I don;t think I would be doing what I am doing now without it.

The experience changed me. It seems to be a dividing point in my life but in some ways I’m glad of it. While I would never wish diabetes on anyone, I know it could of been worse. Getting ill showed me what was important. When I left to go to Canada I wasn’t sure I wanted a relationship with my father at all but a few months after coming back I made the first step to forgiving our past and I’m so glad I did.

I don’t believe in fate or anything like that. The world is unpredictable if you ask me but I do believe that no matter what happens you have to make the best of it. I feel like I have done this with the diabetes and I wound’t change it for the world.

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inukshuk at the top of whistler mountian

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Good times in whistler before I got ill

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Skiing

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my friend Alice who helped so much

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Kimanda, who let my mum stay in her condo

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Back in the UK, having put on a lot of insulin weight

And please is you have the following symptoms go to a Dr not a different continent.

The common symptoms of diabetes

  • Going to the toilet a lot, especially at night.
  • Being really thirsty.
  • Feeling more tired than usual.
  • Losing weight without trying to.
  • Genital itching or thrush.
  • Cuts and wounds take longer to heal.
  • Blurred vision.

I hope you have enjoyed this post and congrats on getting to the end it was a long one! But please don’t try this yourself!

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Thanks

The girl with the braid in her hair xxx

Walking on clouds

This blog has begun by me writing and deleting the first few paragraphs over and over, unable to get the words that I want to come onto the page. It happens like this sometimes. I know what I want to say but the words just refuse to come in the way I want them too. It can be frustrating but I know if I start over enough times I will eventually hit on the right way to start things off.

In this way writing my blog is comparable to working out the best morning routine for dealing with my CFS. Over the past 2 years I have tried numerous ways to allow myself to get the most out of the day but it was only recently that I have finally cracked it. I used to let myself sleep until I woke naturally but doing that meant I would sleep till early afternoon then not get to sleep till the early hours of the morning. In an effort to get a better sleeping pattern I started setting an alarm to make sure I got up at the same time everyday. This worked a bit better but since I was used to sleeping late I set it to go off at 11:30 to begin with. Over the course of a year I finally manged to get this down to 10:30, it was an improvement but still less than ideal.

For the past few months I have been slowly changing the time I wake up. By moving the time by 10 mins every few weeks I have finally managed to start waking up before 10:00. Something that a year ago I would have thought impossible.

But getting up early enough to see the morning isn’t the only change. Graded exercise therapy (GET) is considered one of the key things one must do to recover from CFS but it also has a really bad name within the community. When it was first suggested to me I refused to try it. For one, I couldn’t see how it would help. I have a physical illness, not a form of deconditioning. How would training my body to do more help? I was also aware that for many people GET makes them worse. Having found a routine that let me do some things that I enjoyed I was unwilling to try anything that might make me worse.

But in the end I was persuaded to try. While the science behind CFS is limited the only people who get better seem to be the ones who use GET, so while I might not really understand quite why it helps, I had to admit it was worth doing.

The other thing I felt I needed to make a change with was my writing. I have mentioned (I think) that I am working on a novel. Its been my main focus for over a year now and also shown me that I want to write novels as a career. But while I found the first draft relatively easy to write the first round of editing was taking me ages. My brain struggled to concentrate for long enough to get anything done. Progress was so slow I was getting frustrated and I was unsure if I was making any real meaningful difference.

In an effort to make progress more steady I started to limit how much I would do in a day. Instead of working until my brain went to mush I would only allow myself to do a single page. I wasn’t really sure if this would work. It was an attempt at GET for the brain, to begin with it was frustrating. I still wasn’t making massively steady progress and often my brain simply didn’t wake up enough to be any use.

Then I started to walk before I wrote. I would take my morning walk round the common close to the house, then come in and work on my novel. I never thought I would say this but at that point my morning routine clicked seamlessly into place. Everything seemed to be working and progress in all areas started becoming apparent.

If someone had told me back when I made my first tentative steps towards the recovery process, how quickly things would get better I would never have believed them. The idea that a few simple changes would have the power to change the direction I was heading in quite this dramatically was absurd.

But it happened. I feel a million miles away from where I did a few months ago. My days are longer. I walk twice as far in a morning then I did when I first started. I’m well over half way though the editing process and progress is delightfully steady. I can concentrate for much longer and my days while still quiet, feel so much better than they did.

There is an excitement that wont leave me. A feeling of change. The future no longer feels like an impenetrable mass floating just out of reach. When I was at the CFS clinic earlier in the month the woman I see asked me where I thought I would be in 6 months time. I refused to answer, not because I didn’t think I would have made more progress but I have learnt that plans never really work out the way you expect them to. I know 6 months from now I will be a long way from where I am now but I’m not putting a timescale on my recovery. It will take as long as it takes but I know if I stay positive, keep to baby steps and manage things properly, the future is bright.

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having fun on the river

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with love,

The girl with the braid in her hair

International Womens day

This is rather impromptu. Unlike my other posts it hasn’t been as thought out or listened over for lurking grammatical mistakes that I didn’t pick up on. This is writing from the heart after listening to a song that made me think.

Pretty much every day in a year is dedicated to something or other somewhere, but today it is International Womens day. I know I have been lucky, most of the challenges I have faced have had nothing to do with my gender. I seldom felt discriminated against because I am female. But it happens, sadly, to almost every woman at some point in her life.

Now the tagline /hashtag, whatever its called, is beboldforchange. So I’m going to tell you about something that I still struggle to talk about 7 years on.

I was the only girl in my design and technology class at school. I was me with 19 of the someone of the worst behaved boys in my year group. Back then I was rather timid. I had yet to find out I am autistic and was scared of most things, including some of the boys in my class. I worked in the far corner nearest the teachers desk and along side the few boy I got one with and felt safe working next too.

By the time we had got half way through the year I was more comfortable with being the only girl and dealing with the boys, it seemed that consistently being in the top 2 of the class had earned me some respect, or so I thought.

There was group of boys that where often in trouble and they had the benches next to the tool cupboard. They normally just let me get on with what I was doing but that day I had notices that they kept looking at me. It made me a bit uncomfortable but I didn’t think anything of it.

I had to go and change my tool, so I went over to the cupboard passed the group of boys. When I turned to return to my desk they had blocked 2 of the ways out meaning I had to walk through the group of them. As I made my way through one them ‘spanked’ me.

I felt my body go cold. Nobody had ever touched me in that way before. I felt more vulnerable then I had ever thought possible simply because a boy had touched me. I went back to my desk, shaken. My one friend in the class, asked if I was ok but I was too embarrassed to say anything so I just nodded. I felt dirty, like I was party to some dark secrete.

I didn’t let myself cry. I knew I would never be able to find the words if someone asked me what happened. I could heard the boys talking. They were starting to panic. They thought I was going to tell someone. When I heard them say ” I only spanked her” and “We are going to get in so much trouble for this, it’s sexual assault.” I felt angry burn through me. I wanted them to get in trouble but I was too ashamed to say anything.

It took months for me to feel comfortable going over to the tool cupboard again. I was wary every time one of them walked passed me, thinking they were going to do it again. It had been one of my favourite classes but now I was afraid I was going to be inappropriately touched every time I went to their side of the class room. I didn’t say a word and as a result it happened again a year later and I was still too ashamed to tell anyone.

I know compared to what a lot of people have experience it is almost nothing. I know so much worse happens to women all around the world everyday. But it shook me.

And this happens in schools everywhere. Young girls experience their first taste of casual sexism and most of them, like I was will be too scared and embarrassed to say anything about it.

The fact teenage boys think that is behaviour can be gotten away with scares me. No one should be touched in this manner with out agreeing to it. But as a young woman its so hard to talk about and unless we speak out nothing is going to change.

 

PS. If you want to listen to the song that got me thinking this is the link: https://www.youtube.com/watch?v=0esbbnY5Xvw

Its from my favourite band First Aid Kit but not like their normal stuff.

 

When things must change

I think I was about 15 when I started to come to terms with how the way I react to something, directly impacts the way I feel about it. I know this is all rather obvious but I had always been the type of person who just let things happen. While I was good at getting on with things, I was really quite terrible at finding ways to improve or change the situation.

Previously, when things weren’t going my way, I would bottle up all my frustrations and negative emotions and hold them, until I was with a friend who I could dump them on. Not really the way to do things but I was new to the whole talking about your feelings thing. And talking about things helped, for a about a day. Then I would go back to feeling shitty.

I would then repeat the whole thing again, achieving the same result. This didn’t really do much in terms of helping me and it also drove my friends insane. While they were patient with me to begin with, they soon got board hearing the same complaints and problems over and over. Something had to give.

It took a very frank conversation and a fair bit of crying, for me to accept that I couldn’t expect someone to listen to the same thing over and over and be supportive, if I wasn’t acting on their advice or doing anything to change the situation I was in. I had to act in some way. Sure things might not work and that was fine, but I had to try. I had to take control, I could no longer just sit back and let life happen to me.

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But first you have to recognise the problem. That is often the hard part.

It had taken me a year and a half to get diagnosed with CFS. A year and a half of redefining my bodies limits  and coming to understand my default setting of just pushing through wasn’t going to help. In fact it would make things worse. Up till this point I had always believed that things could be sorted but pushing through regardless of how hard that felt. But you can’t fight CFS and that took a lot of getting used too..

Sure, I could cope with the condition. I had learn how to make the best of each day, how to find away of doing those things I enjoyed, got used to spending days after days in only my own company. But after spending almost two years of my life in a suspended animation, I was getting fed up.

When people asked me if I would have it forever I would shrug. The internet is full of people who have had CFS for decades. The future wasn’t even uncertain, it seemed non existent. My life, at the age of 21, felt like it was hanging the in balance of yet to be proved theories of my barely understood condition.

I told myself I wanted to get better but every time I thought about trying something like Graded exercise therapy, which is one of the recommended treatments, I felt unsure, after all, it makes almost half the people who try it worse. It was hard to think positively. After two years my not too much, not too little approach felt safe, what if I got worse? What if I became unable to write? Or get out of the house at all?

I tried to keep these feelings away from people. I was ashamed of them, ashamed that I had failed in my resolve, that I was choosing safety over progress. I was in a rut and part of me was choosing to stay there.

6 months after being diagnosed and a really terrible bus journey, I was sitting in a room with a member of the CFS service, crying. All my frustrations where pouring out of me. My anger, fear and disappointment, came out in never ending tears. I wanted a quick fix. I wanted my life back. I wanted to be like any other 21 year old.

That meeting, while unpleasant, was the one that finally got me to understand that I was the only person who could get me better. Yes, this is a physical and not really understood illness but the only people who recover are those open to trying. All those feelings I had been trying not to let out, all those days feeling scared that this was it, all the time I had spent feeling ashamed, it all came washing over me.

Sitting on the bus on the way home I felt my strength returning to me. I wasn’t going to let this shitty illness stop me. I wasn’t going to waste my life feeling sorry for myself or fearing the possibility of failure. I was going to beat this. I didn’t really know how, but my mind was made up and things were going to change!

I started the way you would expect any data loving autistic to start, by making a spread sheet on which I could map out my life and look for trends and patterns and keep track of my activity levels. This seemed like a good idea, after all information is power.

For my initial stage of getting to grips with the process of recovery it worked, a bit. But after a month of meticulously putting information into excel and not really seeing anything, I hit gold.

My social life by this point and shrunk to visits to the pharmacy (The’re all really nice there and I enjoy going in to collect my meds and have a chat) and my once a week outing to kayak on the river Thames.

As we paddled back from Putney everyone was chatting and someone asked me what I do, by this point I had started to tell people that I was working on a novel as that sounds much better then saying I don’t work because I’m ill. Sometimes people take that answer and don’t ask more but often people then ask if I’m working as well. I hate trying to explain CFS to people and tell them that I don’t work because of it.  But when I told her I had CFS she told me she had had it too.

This was the first person I had met who had been through it and had come out the other side. We chatted all the way back and she gave me loads of advice and told me how she had recovered. We talked about how I could change my routines to help me get better but also the importance of baby steps in everything. I could feel plans forming in my head and I just wanted to do it all at once. But she told me to hold back.

The next week I started change things in line with her advice. Instead of going on an exercise bike I starting to go for a walk everyday with the aim of increasing the distance gradually. I began meditating after launch each day as mindfulness and relaxation have been proved to help people with CFS. I also started to inch my wake up time earlier, 10 mins every 2 weeks or so.

It may seem like a small thing but for me its huge. I know the process is a long one. I know it won’t go 100% to plan. But after two years of only just managing to keep my head above the water, I’m finally starting to swim.

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Me and Naomi who’s one of my oldest friends

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Out kayaking on the river

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With love

The girl with the braid in her hair x

Stuck in a bubble

I have recently made some big changes to the way I am managing my CFS. This post, I hope, will help show you how I lived and the feelings and emotions I experienced while getting to grips with Chronic Fatigue.

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I used to be active. I used to climb for hours, walk for miles, run up hills. I used to think nothing would stop me. I remember, when I was coming to terms with what it meant to be autistic, thinking to myself that the only thing that could hold me back was fear. I was grateful that it was a mental thing I could learn to over come, apposed to a physical barrier. I thought, that as long as I refused to let fear stop me, I could do anything.

It’s hard to describe what it is like to live with CFS. But a simple explanation is that my body doesn’t produce as much energy as it should and is less able to recycle the molecules and stuff that are used in the process, so I run out of energy much quicker and need longer to get it back. It’s a bit like trying to run a car whose fuel tank only fills to 25% as hard and as fast as a car which can fill to 100%. Quite simply, it won’t work.

But I’m a human being, not a car. For years my body seemed to work well. I loved to be in the mountains, on my bike or at a climbing wall. I saw myself as a mountain girl, I was happiest outdoors. I was planning to travel, see the world, but then I got a cold and everything came crashing in.

I went from long days out, to spending most of my time in my room watching TV. I told myself I would get better soon. I would get back to normal, I just needed to be patient.

But I didn’t get better. The tiredness persisted. I was sleeping for over 12 hours and doing nothing in the days. And then on a good day, I would go out and try to do everything I had be wanting to do, only to crash again after. I stopped cooking good food and instead bought cheap stuff, that was easy and required little preparation. Eventually I agreed to move back in with my folks until the Doctors could figure out what was wrong.

Moving from the Highlands to London was hard. I had no friends in the city and hated the thought of being away from the vast outdoors. I spent most of my time alone hardly leaving my room at all. I resented my body for not working as I felt it should. I didn’t sleep well. Taking hours to get to sleep and then staying in bed until early afternoon. I saw Doctor after Doctor, each one not seeming to be able to find out what was wrong with me and passing me on.

Eventually one suggested that I  might have chronic fatigue syndrome. I looked it up online and it seemed to fit, but what I read was hardly encouraging, it seemed for most people, it was a lifelong and often debilitating thing. I was 20. I felt like the rest of my life had been robbed.

I started to try to find ways of reducing my levels of exhaustion. I set an alarm to get me up in the mornings, to keep my sleep pattern consistent. I stopped pushing myself and then needing days to recover. I ate better and tried to remain positive. But it was hard.

I would see pictures of my friends out climbing or on holiday and fill with jealousy. I wanted to be doing those things too. I was lonely, most of the time I was alone in my bedroom. I hardly saw or spoke to my friends, they were at uni, busy with their own lives. I often felt a prisoner to my body, trapped with no way out. It became hard to have conversations, I never had anything new to say and I didn’t want everything to be about my health.

I was also conscious to seem positive. I didn’t want to seem like I was complaining. When things got too much, I would hold it in, until safe in my room at night and cry silently. I never told anyone. I didn’t want them to think I couldn’t handle it.

But as time moved on things got better. I woke up one morning in mid December (2015) with an idea for a story. It felt strong so I followed it. It became my main focus. This novel that I was writing, a way of escaping my reality. My characters became my friends. I was happiest when I wrote but I could only concentrate for short periods.

I became project focused. Writing and knitting. I got scared of over doing things as it would mean I would’t be able to write. I final felt like I had a purpose again.

But time kept moving on and I was’t getting any better. I was stuck. I was able to manage my symptoms but nothing seemed to be changing. The future seemed to spread away from me, vast and unattainable. I was stuck in a bubble, it was safe and warm but not where I wanted to be.

I wanted to to move on but I was scared of doing anything that would make me too tired to do the things I enjoyed. What if I tried something and it meant I was too tired to write for days? Or left me unable to do anything but watch box sets on Netflix for a week. I knew my mental health was dependent on being able to do things. Change seemed too much of a risk.

While I kept a smile on my face and told everyone that I was good, it was a lie. The more I said it the more I wanted to believe it. Maybe if I smiled enough and repeatedly told people that I was good thanks, it would become true.

I knew I had to keep the mask of coping on, I had to convince myself I would be okay. I had to tell myself I would get better, even if I had no idea how.

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The lamas I knitted who went to Peru (Photo Lauren Williams)

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mountain loving!

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up a mountain

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Competing in the old days

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Making a new friend in Whistler

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with love,

The girl with the braid in her hair xxx