Learning how to stop

My head is full, too full. Full to the extent that getting to sleep is getting harder and I’m struggling to process the day to day demands that I know I should manage. It’s full to the extent that things I would normally take in my stride are bothering me and I’m so tired I slept 13 hours last night, something I haven’t needed to do for a long time.

I also keep ‘writing’ things in my head. I don’t quite know how else to describe it when my head gets full or I have something going on that I’m struggling to process I basically start writing it down in my head, it’s half effective. When I write I always seem to address an imaginary audience. For as long as I can remember it has been how I think, as though, I’m talking to someone else, and having never discussed this with anyone before I have no idea if this is the same for other people too. But for me, it works. As for thought writing, it is a semi-effective method of organizing my thoughts until I am able to get them down properly.

I have been doing this for a while now, knowing I need to write but never quite finding the time or admitting to myself the urgency of it, I don’t always like the way I think or handle things, the way worrying and fretting and overthinking is an intrinsic part of my nature. I have been told to stop worrying a lot lately but I really don’t know how to. I stop worrying by rationalizing, by making myself take a step back and think things through, it’s not a particularly natural process, and a lot of effort goes into it. Especially when it involves interactions with other people as my source of worry. And when I’m tired I find it almost impossible.

And that’s been the problem, too much in my head and being too tired to deal with it properly. At the moment when I look at my wall calnader, it is FULL. Like the fullest it has ever been and in some ways this is exciting, I leave the country for 5 months in May, a trip that I have been planning for as long as I have felt able to plan things. And after 4 years of Chronic Fatigue being able to plan and trip like this is amazing, it’s also really scary.

For the past four and a half years my life has been within quite strict constraints. At times I have felt like a prisoner, unable to get away from an illness that is holding me back. There has been little to really excite me or celebrate, writing my novel being the biggest and best thing and finally being well enough to work again being the other. But now I am able to leave the cocoon of the last 4 years and do something I have been dreaming of forever it seems. I get to travel properly, on my own, doing what I want to do. And just the thought of it is amazing, but the compulsive planning, googling, budgeting and sleep stopping daydreaming is less so.

And when I’m not planning I’m working, 4 days a week for a long time has been fine, but I’m also coming up to my driving test and so have lessons on most of my days off, I have Doctors appointments to get the meds I need for traveling and suddenly it feels like all my days are running together with no chance to rest, and I need to rest.

I can feel myself flagging, My body needs a break for the hectic and exciting life I have been rejoicing in having. I may not feel like I am ill anymore but I’m not out of the woods just yet. I still need to listen when my body is screaming at me to stop, when I feel my ability to deal with the day to day start to slip, when my emotions start to take control and I find myself needing to go to bed at 10pm and sleep through till 11 the next morning. I may not feel ill anymore but I’m not 100% well either.

Admitting to myself that I need to stop is fucking hard. I have never been good at accepting weakness. I hate the fact I can’t keep up with my peers despite the fact I have spent the last 4 years ill. And I know it is silly. I know I can’t do everything I quite want to yet and I need to look after myself and what will happen if I don’t but I still resent it.

Admitting to myself that I need to rest is hard but admitting to someone else I need it is even harder. But for the past few days when I have been looking at my calender, my heart has been filling with dread, I honestly didn’t know how I was going to get through the next few weeks. I was getting irritable and easily upset at work. My head refused to see reason and the thought of forcing myself through the next few weeks was enough to make me want to cry. So I did something I HATE doing. I admitted I needed a break and asked my boss if I could have an extra day off.

I didn’t even quite get to the asking thing. As soon as I asked if we could look at the rota he just asked me if I needed a day off this week. I seem to be pretty easy to read most of the time and the last few days at work I haven’t been myself. So I got Thursday off. Which will give me three days in a row away from work and while two of them are pretty full one will be given over to resting. I could feel the relief seeping through me at the thought of it. I already was starting to feel in more control again.

I went to bed at 10 last night and slept through to 11 this morning. I have a driving lesson at 2 but I have been able to write all this down. My head is feeling clearer already. I may not like to admit I can’t keep up all the time. But finally, I’m learning to stop before I get to crisis point not when I’m falling headlong into it.

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Whether this was worth reading or not it was worth writing.

If you bother to read all the way through cool, my next post is likely to be more enjoyable as it will be focusing to getting ready to leave the country for 5 months and then for the next 5 months this will turn into a bit more of a travel blog.

Anyway, this was what was important to me today!

With love,

The girl with the braid in her hair xxx

What a difference a year can make…

I’m not really the type of person who cares much about the big holidays, Christmas, New Year, Easter, they don’t mean much to me. Tonight I’m home with the cat. I don’t like the noise and bustle of parties and normally the fireworks annoy me as I just want a good night sleep, but as this year comes to a close I can’t help but look back and marvel at the change this year has made.

It’s been 6 years since I was this healthy. 6 years of different illness going undetected and undiagnosed and then controlling my whole life. From the diabetes that I can first see symptoms of at 17 to the Chronic Fatigue Syndrome (CFS) that has been the biggest consideration in my life for the past 4 years.

I welcomed 2015 in Austria, it was a ski holiday but my body seemed unable to ski, I remember everything feeling disconnected, the easy I had had before of skis had gone, persistent exhaustion had left me unable to really ski, I slept 12 hours every night that holiday and it was after that I first saw a Doctor to question my consistent exhaustion. I can only really think of three good things that came out of that year, starting to Kayak again, getting to terms with and starting to lose all the weight I had put on due to starting to take insulin and beginning to work on my novel.

In 2016 I finally got diagnosed with CFS and in 2017 I started to get better. By the end of 2017 I was able to go for a few hours two days in a row! and was ready to start thinking about working again.

At the beginning of this year, I knew I was ready to start working again, the idea was both terrifying and incredibly exciting, for someone who had spent the best part of three years in her bedroom and totally dependent on others for pretty much everything having an independent income and feeling like a functioning human being again was like a dream come true.

I started work on the 9th of January. After my first day of work I was buzzing and so tired I slept for 12 hours. I hadn’t told anyone about my illness intent on keeping it a secret scared that if they knew I would get in trouble.

To begin with, working was hard, I was only doing 2 days a week but I needed almost all my time off to recover from those two days. I slowly built up my endurance, in the summer moving to three days a week and in October to 4. My world seemed to be expanding beyond anything I could have hoped for. It was like being set free from a prison I didn’t even really know I was in.

But it was more than just being able to work again that has made the past year the best I have had for a long time. In starting work, my horizons opened up. I was forced to face challenges that I had been able to hide from. It took me a while to get properly comfortable in the shop. I went in with the attitude that it didn’t matter if people liked me or not, I was there to work not make friends but as much as that works in self-defense (not caring means you don’t get hurt if you fuck up) it’s a hard way to approach life.

I did quite well. Pubs with people I’m not comfortable with for me is terrifying so I always politely declined invitations to go out after work, I found reading some of the people around me hard and there were a few misunderstandings. It was only when I had my appraisal and my manager said that I hadn’t really made myself part of the team did I really start to understand why people go out with each other after work, to get out of it again I just explained I was autistic, these things just aren’t natural for me.

As I moved up to three days and summer brought a less stressful and busy working environment I started to get to know some of the people I worked with a little better. I had more energy and was starting to want to have a little more of a social life. I was still being invited out and still turning the invitation down but something in my head was becoming more interested, there were the people I was around all the time, work friends are a thing. They are not the people you go to when everything is crumbling or to share the best things with but they are important none the less. These people are the ones you spent 9 hours a day with, the one who you bitch about customers with, the ones who check up on you when stress and stupid and rude people get to you, the ones you laugh with and chat to and have to put up with whether you are in the mood for it or not. They may not be your best friends but they do matter.

As summer progressed I started to make plans for next year. I was finding joy in the small things. But being able to plan THAT far ahead seemed like a huge thing after the past few years. Everything was starting to seem possible.

By October I was starting to forget that I was still ill. The CFS seemed so much smaller and I was able to work 4 days a week AND do things in my days off. I was also the month that after 10 months of working at the shop I went to the pub for the first time, which for me was a big deal. admittedly the first time was a quite Pub in Tamworth after the ski test with two people I had worked with since I started and we talked almost exclusively about skis and ski boots and work, but for someone who doesn’t drink dislikes loud noises and busy places it was a big step.

The bigger achievement was that weekend I went to the pub again, this time a bust central London one for someones leaving drinks, I thought I would go and see and maybe stay for half an hour 3 and a half hours later I headed home, I even kinda enjoyed myself.

November brought a feeling of invincibility. The CFS hardly seemed to matter. I had a new overconfidence. I could do anything. I was on this massive high. I started working more, going out more, pushing myself in everything, thinking I was totally healthy again, forgetting that yes I was better but I still needed to take care of myself. The CFS wasn’t gone, I was better but I could ruin all the progress I had made by being stupid.

December brought busier days at work and less time off. My sleep started to become broken. I was dreaming about ski boot fittings most nights unable to switch off my brain. It was getting too much but I didn’t see that. I wanted to be well again, I wanted to be the girl who could cope with full-time work. I kept pushing on.

Looking back over the few weeks before I had my mini breakdown in the ski workshop it’s not a surprise it came to that. Even now, two weeks later and feeling much more in control again, I’m kinda impressed with how much was going on in my head before the implosion did come and that it didn’t come sooner. I was always going to crash, I was doing too much too soon, the signs where there, I just choose to ignore them.

But now, having survived my first Christmas in retail working full time (two weeks only) and having come to terms with the fact my body is much better but I’m not quite fully fit yet I feel a sort of peace. This year has been the one I got my life back. And whatever 2019 brings I know it will be built on the success of this year and the progress that I have made and the friends that have seen me through.

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My best pics of 2018! From knitted mini skirts to Estonian swings!

And so at the end of this year, I want to thank those who have helped me through it and made it such a good one! and wish everyone who has followed the spewing of my brain this year a happy new year and all the best in 2019!

With Love the girl with the braid in her hair xxx

 

Back to the real word

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Flying high above the alps!

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

Hope you ahve enjoyed,

With love,

The girl with the braid in her hair xxx

Three long years

It’s hard to think it’s been almost three years since I got the cold that caused the CFS. They have, in many ways been the stranges three years of my life. No one expects to get a chronic illness at 19, it’s the time when people should be out, exploring the world, doing new things, full of energy, but instead, I had to move back in with my parents and try to come to terms with the new limits of my body.

The first year was the hardest by far. No one knew what was wrong with me and it was hard to believe things would get better. At that point, my whole identity was built around the things I did. Climbing, skiing, spending time in the mountains, that was who I was. Losing that and having to move to a large city far away from everything I loved almost broke me.

The second year, I found purpose. I started writing a novel, it was an accident at first. I just woke up one day with an idea in my head and I knew I wouldn’t rest until I followed it. I had the time and even with my problems concentrating I managed to write. Often I would be left exhausted by the effort I made each day working on the novel but it was worth it, it gave me something to focus on and if I didn’t use my energy on writing then all I would be doing was binge-watching TV and knitting.

For a while, I tried to convince myself that this was enough. The internet was full of stories of people who never got better, who had to learn to live within the confinements of CFS and it was hard to believe that I would get better at all. My life, it seemed would be spent inside a house with only my imagination and once weekly kayaking as an escape.

I tried hard to make myself believe that this was enough, that I could live within these parameters. But I knew deep down I was doing that because it felt safe, I was scared of losing the few things I had by trying to get better. While I tried to convince the outside world that things would change and I would get my life back I struggled to believe it. I have written about this in more detail in Stuck in a bubble

Getting better was always the aim, getting to a point where I could live the life I wanted to. I thought as I got better things would just get easier and some things have. (Please note I am not complaining at this point, I am thrilled at my progress but it can still be damn hard) What I didn’t expect was that even as I got better some things would get harder.

As I have said before CFS is a constant balancing act. I’m always having to think about everything I do. Is this worth the recovery time? Am I ready to introduce something new into my week? What might be causing this excess tiredness? On top of this, I have to balance all the considerations for my depression and diabetes. It can feel like I spend half my time trying to balance one aspect of my life against another.

I know this is something I will always have to do to an extent. Carbs will always have to be counted, depression will always need to be kept on top of. It is just a fact of my life. And I don’t mind for the most part but every now and again it gets to me.

Sometimes I want to get away from it all. I want to be able to do things and eat things without needing to think too much. I won’t talk about this readily normally. I don’t want to be seen as complaining after all things have got a lot better. But it doesn’t stop it being hard. Getting better, it seems means more thinking, more balancing and more patience.

It’s also more lonely. Before I didn’t have the energy to go out and too much social interaction would leave me exhausted, I couldn’t cope so I didn’t crave it as much. I was too tired to want to do things, life was boring but I knew I wouldn’t cope with anymore. Now I need more, my week is managed day by day, Sunday is kayaking, Monday is also kayaking (being out two days in a row is a big deal!) Tuesday is recovering from being out two days in a row, Wednesday is normally cooking dinner and lots if knitting, Thursday, and Friday are writing days, either one or the other I will go to a local cafe for a few hours with my laptop and write and Saturday is just dull. I don’t want to tire myself out before my two days kayaking.

For a while, this formula worked but now I’m needing more again. In the new year I know I will need something more, preferably something that pays money. I need to have more interaction with the world. 5 days a week with no one but the cat to talk to all day is too much alone time. But I’m scared that it will be hard to find something that I will manage, after all, it’s been three years since I last had a job and I will only be looking for a few hours a week.

I feel a million miles away from where I was. It’s hard to believe that a year ago I would go days without leaving the house. That I didn’t know if I would ever get better. Now I know I will. I know I will get back to where I want to be it’s just going to take a while. And in the meantime, I will write, kayak and knit my way through each day. Until I run out of words to write, yarn to knit with or the Thames runs dry.

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Sorry, it has taken so long to get another post out, I have been a bit preoccupied with my novel and vast amounts of Christmas knitting!

If you like what I do please help spead the word on FB and twitter ect.

thank you

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

 

If you like my work please follow my twitter and facebook page (I’m only 2 likes away from 50!).

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