Yesterday I went for a 'coffee' (actually I had a chai latte but it was way too sweet so I got an iced drink) with a friend.
It doesn't sound like a lot, but to me it was a huge deal. To go for a coffee meant getting the bus by myself and then relying on my legs to get me to Costa, back to the bus stop afterwards and then home when I got off the bus, not to mention sitting and chatting for ages. I also managed a walk around Poundland as well (where I picked up some very cute cupcake cases) which is in incredible. I know it probably wasn't my smartest idea as I am planning to go out tonight, and already I am feeling the pain from doing too much; but at least I now know I can do it.
I know I have been improving since moving into my new flat, though sometimes it feels as though I am taking steps backwards instead of forwards. I have known it, and am hopeful, but yesterday was the first time I imagined that I could really get my life back the way it was before. I know I still have a long way to go, but I'm starting to really believe it, as opposed to simply acknowledging it.
Of course I will likely always have to be aware of my M.E. - it isn't a disability that disappears completely - but I'm starting to imagine a life with a job and a social life (that isn't retained to Twitter) and I can't wait to be 'normal' again.
So going for a coffee may not be a big deal to everyone, but for me it is another hurdle I've finally managed to cross.
Saturday, 15 March 2014
Friday, 14 February 2014
Best Valentine's Day: Memories That Have Made Me
So much has happened in my life already, and a lot of those experiences have stayed with me. They are not all monumentous, nor are they all life changing. But every single one of them (and the countless more that are buried deep within me) have made me who I am.
I hope others will join in with me and post their own memories on their blogs (or in the comments). I will be posting mine every Friday, but it doesn’t matter when you write yours or if you wish to do them fortnightly or monthly – your writing should fit with your schedule. If you do join I ask that you link to my blog with this link: http://emptythoughtsrewritten.blogspot.co.uk (until I’ve worked out how to create a button for you to display) and that you will link your POST (not just your blog link please) in the comments each week (until I’ve worked out how to make a linky thing for you to add your links to – I’m really not very tech-savvy!).
Sorry for posting this so late (it is 10 pm here after all), but Valentine's Day sort of crept up on me this year - I was aware of it, I just didn't make the connection in my mind until I was just inundated with Valentine videos on my YouTube stream. I'm sure you don't care about that, so I'm just going to tell you about my favourite Valentine memory.
I was in Sixth Form (wow, that was at least 8 years ago) and dating a boy called James. In our group of friends, there was only one other couple, so we made the choice to go on a double date. It could have been a disaster, but it turned into one of my best memories of all time.
We chose Great Yarmouth as our destination (I still have no idea why we thought that was remotely romantic) which meant getting on a train. I remember being quite excited by this fact alone, as it was the first time I went on a train without my parents; it certainly added to the 'grown-upness' of the whole day and I know that it felt like I was finally an adult (who had responsibilities as well as freedom).
The first thing I actually remember is when we met up at the train station. When asked, I specifically told James that I didn't want anything expensive or any soft toys. He turned up with the Valentine bear from Build-a-Bear (definitely expensive, and definitely a stuffed toy); I was really pissed at him, after all, I now had to carry around this great big cardboard box all day. Yet I decided to let it go (I think that was a first for me) as I wanted to enjoy the day.
To be honest I don't remember much else. I know it was a Sunday so almost everywhere was closed, there were very few people around, and the weather was grey and wet. We went into an arcade where they had ten-pin bowling - the really old kind with strings on the pins and every bounce of the ball made you think the floor was going to give way (it was on the second floor). Before that day I didn't even realise there was bowling without screens and automated systems. We had pot noodles from a machine for lunch, as we couldn't find chips anywhere. Then of course had to have ice cream as we walked along the beach in the rain. These are the few specifics I can pinpoint in my mind.
What I really remember about the day was how happy I was. I was spending the day with my boyfriend and two of my best friends (admittedly, I didn't know the guy that much back then, but not the point). We never ran out of conversation and there was a lot of laughter and the kind of gaiety that has you running in circles on the sand with your arms widespread. I know there are many times since then that I've felt just as happy (or even happier), but that Valentine's Day was the first time in my 'adult' life when I fully embraced that joy and knew that if I had that feeling every now and then, life wouldn't be too bad. Since then I've been lucky enough to have that feeling often and always do my best to embrace it.
I have a feeling that in ten or twenty years time, I will still remember that Valentine's Day. Even if I forget what actually happened, I am sure I will always remember where my ability to embrace life's joys started.
Happy Valentine's Day.
Sorry for posting this so late (it is 10 pm here after all), but Valentine's Day sort of crept up on me this year - I was aware of it, I just didn't make the connection in my mind until I was just inundated with Valentine videos on my YouTube stream. I'm sure you don't care about that, so I'm just going to tell you about my favourite Valentine memory.
I was in Sixth Form (wow, that was at least 8 years ago) and dating a boy called James. In our group of friends, there was only one other couple, so we made the choice to go on a double date. It could have been a disaster, but it turned into one of my best memories of all time.
We chose Great Yarmouth as our destination (I still have no idea why we thought that was remotely romantic) which meant getting on a train. I remember being quite excited by this fact alone, as it was the first time I went on a train without my parents; it certainly added to the 'grown-upness' of the whole day and I know that it felt like I was finally an adult (who had responsibilities as well as freedom).
The first thing I actually remember is when we met up at the train station. When asked, I specifically told James that I didn't want anything expensive or any soft toys. He turned up with the Valentine bear from Build-a-Bear (definitely expensive, and definitely a stuffed toy); I was really pissed at him, after all, I now had to carry around this great big cardboard box all day. Yet I decided to let it go (I think that was a first for me) as I wanted to enjoy the day.
To be honest I don't remember much else. I know it was a Sunday so almost everywhere was closed, there were very few people around, and the weather was grey and wet. We went into an arcade where they had ten-pin bowling - the really old kind with strings on the pins and every bounce of the ball made you think the floor was going to give way (it was on the second floor). Before that day I didn't even realise there was bowling without screens and automated systems. We had pot noodles from a machine for lunch, as we couldn't find chips anywhere. Then of course had to have ice cream as we walked along the beach in the rain. These are the few specifics I can pinpoint in my mind.
What I really remember about the day was how happy I was. I was spending the day with my boyfriend and two of my best friends (admittedly, I didn't know the guy that much back then, but not the point). We never ran out of conversation and there was a lot of laughter and the kind of gaiety that has you running in circles on the sand with your arms widespread. I know there are many times since then that I've felt just as happy (or even happier), but that Valentine's Day was the first time in my 'adult' life when I fully embraced that joy and knew that if I had that feeling every now and then, life wouldn't be too bad. Since then I've been lucky enough to have that feeling often and always do my best to embrace it.
I have a feeling that in ten or twenty years time, I will still remember that Valentine's Day. Even if I forget what actually happened, I am sure I will always remember where my ability to embrace life's joys started.
Happy Valentine's Day.
Sunday, 9 February 2014
Sunday Shout Out: M.E./C.F.S. Diary Pro (App)
One thing that is often recommended for those of us living with chronic disabilities such as M.E. is to keep an 'energy diary'. Basically this means staying aware of how much we are resting, and how much low/medium/high activity we are doing. Of course, this varies from person to person, as everyone's energy level is different - for example, taking a shower is a high-level activity for me now, but I know that for many people showering isn't something they would classify as difficult.
Anyway, I was advised to do an energy diary when I was first diagnosed; and I did, for a couple of weeks. Honestly though, I found it annoying having to remember to write things down and highlight the colour etc. Recently I became aware that as my health has changed so much, I should start keeping an energy diary again. I resisted starting one, as it's not a 'fun' thing to do, and if done on paper, it does cut into my available energy. So I Googled to see if there were any apps I could use to keep track of what I'm doing, and was amazed to discover one that is actually designed for people in the same situation as myself.
M.E./C.F.S. Diary Pro is an app where writing down what kind of activity I'm doing is as easy as pressing a colour-code button and then tapping the half hour block it correlates to. Not only can you then easily see how much of each thing you've been doing (for example, I can see I need to rest more often), you can add in how bad your symptoms are and access graphs showing the data over time. Of course, I wish the app was a little more adjustable to the individual case, but it is still definitely worth the £4.99 (though it's on offer this month as the new, updated version has only just been released). I am certain I will be using this app for quite a while, and it's much easier than having to map out what I'm doing via pen and paper, as it requires very little effort for me to just press a few buttons instead.
Do you keep an energy diary? Have you found it useful? I would also love to know if there are any other apps other spoonies have found useful.
Anyway, I was advised to do an energy diary when I was first diagnosed; and I did, for a couple of weeks. Honestly though, I found it annoying having to remember to write things down and highlight the colour etc. Recently I became aware that as my health has changed so much, I should start keeping an energy diary again. I resisted starting one, as it's not a 'fun' thing to do, and if done on paper, it does cut into my available energy. So I Googled to see if there were any apps I could use to keep track of what I'm doing, and was amazed to discover one that is actually designed for people in the same situation as myself.
M.E./C.F.S. Diary Pro is an app where writing down what kind of activity I'm doing is as easy as pressing a colour-code button and then tapping the half hour block it correlates to. Not only can you then easily see how much of each thing you've been doing (for example, I can see I need to rest more often), you can add in how bad your symptoms are and access graphs showing the data over time. Of course, I wish the app was a little more adjustable to the individual case, but it is still definitely worth the £4.99 (though it's on offer this month as the new, updated version has only just been released). I am certain I will be using this app for quite a while, and it's much easier than having to map out what I'm doing via pen and paper, as it requires very little effort for me to just press a few buttons instead.
Do you keep an energy diary? Have you found it useful? I would also love to know if there are any other apps other spoonies have found useful.
Tuesday, 4 February 2014
Living History
For those of you who aren't Doctor Who fans - this post isn't really about Doctor Who, though the video above prompted this post and is a good example of my points.
As I was watching all the different Doctor Who opening credits, in order, I couldn't help but notice that as I viewed them in my head I was thinking 'yes, that's definitely 70's, and that is obviously 80's, and OMG that is sooooo 90's'. Of course they are all similar and you can see how the theme evolves into what it currently is, and that in itself is probably a whole other post - seeing how over time one thing can morph into something completely different yet when you break it down it is easy to follow the progress, and wondering if Doctor Who will still be around in 20 years time.
But my point, seeing as there is one I am actually trying to get to, is that there are certain things we automatically associate with certain time periods, and these are especially noticeable in television as different effects were discovered and became popular. From those associations, we create ideas of what those decades were like - eg. swinging sixties where everyone was a hippy with long hair; eighties with flared trousers and neon clothes. Obviously I can't know what those years were like, only what is projected from films and photos and stories.
And this got me wondering (yes, I'm almost at what I wanted to write about), is what people in 40 years time or so, will look back and think of us right now. What things will they remember, what will be distinctive about our society and culture? This is something I often think about, and of course cannot have any clue, but I think it's something that's fascinating - that we are living history right now. I can't wait to find out what the future holds, but I also would love to know what future generations will look back and see.
I guess this post wasn't particularly cohesive and a bit rambley, so sorry about that. However, I'm super excited about the fact that once again I seem to have started having ideas I want to write about that aren't simply updates about my health, so fingers crossed there will be more random content spewing from my brain here soon.
Friday, 31 January 2014
Hibernating and Gentle Stirring
If you follow me on Twitter, then you'll know that the past few weeks haven't been my best. My M.E. has reared it's head, causing me to struggle to do the few things I had previously been able to do without much issue (such as going online, making breakfast and lunch, etc).
Just before Christmas I was beginning to see a slight improvement in my health, and was beginning to have hope that one day I would return to a 'normal' life. This has made these past few weeks all the harder, as to be honest it has been disheartening to go back to not even being able to read as much as I would like, whenever I'd like. In a way it felt like taking a step forward, only to take a step back. Thankfully I have had the support of many wonderful 'spoonie' friends, who have made it possible for me to fight the downward spiral my depression, frustration and anger was taking me.
Michael Nobbs made January a month of hibernation. I hadn't intended my January to follow suit, but my body clearly had other ideas. Now that my emotional and mental state have come back to positive, I'm planning to join Michael's month of gentle stirring in February (can't believe that tomorrow is February, it seems far too soon), by committing to working on a project for 20 minutes every day. 20 minutes may not sound a lot to some people, but to me each 20 minutes of work will likely need to be followed by 90-120 minutes of full resting, and of course, 20 minutes is better than none. If you'd like to join in, you can find out more here, and I would love it if you let me know in the comments. The project I will be working on is one I started last year, and feel it's time to continue and hopefully finish. I hope you will understand that I won't be sharing the specifics here just yet, as from experience I have discovered that I have a much better chance of finishing if I don't talk about it much.
On the plus side of the past few weeks, I have had plenty of time to think without planning or hoping or dreaming, which has left me feeling open and ready to be filled with new ideas. I've also been watching Charmed on Netflix (I'm just starting series 3 so no spoilers please), and wondering why on earth I waited until now to give the show a chance (actually, I know it was because I read a few of the books when I was a teenager and hated them). I've also been watching White Collar when I've been feeling up to it (shows like this use more energy than you'd think, as it requires me to actively pay attention the whole time to actually enjoy it), and have a very long list of films and shows I want to watch in the future.
Overall, I don't think this was a wasted month, as it's given me the time to recover from the holiday season (admittedly, I'd like to have recovered earlier, but that's life with M.E.) both physically and mentally, and I'm back to hoping and dreaming about the year to follow.
Just before Christmas I was beginning to see a slight improvement in my health, and was beginning to have hope that one day I would return to a 'normal' life. This has made these past few weeks all the harder, as to be honest it has been disheartening to go back to not even being able to read as much as I would like, whenever I'd like. In a way it felt like taking a step forward, only to take a step back. Thankfully I have had the support of many wonderful 'spoonie' friends, who have made it possible for me to fight the downward spiral my depression, frustration and anger was taking me.
Michael Nobbs made January a month of hibernation. I hadn't intended my January to follow suit, but my body clearly had other ideas. Now that my emotional and mental state have come back to positive, I'm planning to join Michael's month of gentle stirring in February (can't believe that tomorrow is February, it seems far too soon), by committing to working on a project for 20 minutes every day. 20 minutes may not sound a lot to some people, but to me each 20 minutes of work will likely need to be followed by 90-120 minutes of full resting, and of course, 20 minutes is better than none. If you'd like to join in, you can find out more here, and I would love it if you let me know in the comments. The project I will be working on is one I started last year, and feel it's time to continue and hopefully finish. I hope you will understand that I won't be sharing the specifics here just yet, as from experience I have discovered that I have a much better chance of finishing if I don't talk about it much.
On the plus side of the past few weeks, I have had plenty of time to think without planning or hoping or dreaming, which has left me feeling open and ready to be filled with new ideas. I've also been watching Charmed on Netflix (I'm just starting series 3 so no spoilers please), and wondering why on earth I waited until now to give the show a chance (actually, I know it was because I read a few of the books when I was a teenager and hated them). I've also been watching White Collar when I've been feeling up to it (shows like this use more energy than you'd think, as it requires me to actively pay attention the whole time to actually enjoy it), and have a very long list of films and shows I want to watch in the future.
Overall, I don't think this was a wasted month, as it's given me the time to recover from the holiday season (admittedly, I'd like to have recovered earlier, but that's life with M.E.) both physically and mentally, and I'm back to hoping and dreaming about the year to follow.
Sunday, 19 January 2014
Sunday Shout Out: Duolingo
Pretty much since I left Sixth Form, I have been keeping my French and Italian books (GCSE and AS-Level) with the complete intention of reteaching myself French and starting again with Italian (I didn't do a whole lot of Italian, and all I remember is how to say 'my name is...' which I don't think will get me very far). Every place I have lived since I moved away from my parents, I have taken these books with me.
I am really passionate about foreign languages. I love how they sound, and I hate that I can only speak one language fluently (and for that reason often wish I'd been born somewhere else where English is taught as a second language practically since birth). But I'm not good at foreign languages. No matter how hard I tried, how much I studied, I still lagged at the back of the class, and managed to get a 'U' in AS French. For those of you who know me, you'll know that I was a bit of a swot in school and graded fairly high in most of my classes. The burn of course is that French was the only subject I actually tried at, yet it was my worst subject.
Anyway, a couple of months ago one of my brothers (or two of them, I'm not sure), mentioned DuoLingo - a free site which helps you learn foreign languages. I dutifully bookmarked it then forgot all about it. Last week I watched this New Year video, and Sanne mentioned the DuoLingo app. As I'm beginning to get used to my smartphone, I figured I'd give it a go. I've been using it for a week and already I have learnt words I'm fairly certain I never knew.
DuoLingo teaches you in short themed sections. You translate to and from your chosen language and are also able to practice your pronunciation. As i said, it is both a website and an app (they sync together), and for anyone thinking that this is the year to learn a new language, or refresh your memory, I have to point you in DuoLingo's direction.
Oh, and you can follow me here.
[Disclaimer: I am in no way, shape, or form, sponsored to write about this site. I just want to share it with you.]
I am really passionate about foreign languages. I love how they sound, and I hate that I can only speak one language fluently (and for that reason often wish I'd been born somewhere else where English is taught as a second language practically since birth). But I'm not good at foreign languages. No matter how hard I tried, how much I studied, I still lagged at the back of the class, and managed to get a 'U' in AS French. For those of you who know me, you'll know that I was a bit of a swot in school and graded fairly high in most of my classes. The burn of course is that French was the only subject I actually tried at, yet it was my worst subject.
Anyway, a couple of months ago one of my brothers (or two of them, I'm not sure), mentioned DuoLingo - a free site which helps you learn foreign languages. I dutifully bookmarked it then forgot all about it. Last week I watched this New Year video, and Sanne mentioned the DuoLingo app. As I'm beginning to get used to my smartphone, I figured I'd give it a go. I've been using it for a week and already I have learnt words I'm fairly certain I never knew.
DuoLingo teaches you in short themed sections. You translate to and from your chosen language and are also able to practice your pronunciation. As i said, it is both a website and an app (they sync together), and for anyone thinking that this is the year to learn a new language, or refresh your memory, I have to point you in DuoLingo's direction.
Oh, and you can follow me here.
[Disclaimer: I am in no way, shape, or form, sponsored to write about this site. I just want to share it with you.]
Thursday, 16 January 2014
A Musing, A Ramble and Thoughts on M.E.
For those of you living without a chronic disability, the chances are you won't really get excited in the same way I'm about to.
Today I started reading the next book on my ever growing TBR (to be read) pile. It's a women's literature book and I've only read the first few chapters, but I just had to share a few sentences. The first sentence is from the end of the first chapter:
And later on:
While this book isn't 'new' (2004), I can't help but feel a surge of hope at seeing M.E. included in a book this way. It marks, at least to me, the idea that people in general are becoming more aware of it. When you live online, talking mostly to people with chronic disabilities, it's easy to forget that the rest of the world doesn't have much of a clue of what is happening to us.
In some small way it also felt like a validation. I know it shouldn't have, I know what I live with and what it has done to my life and to others' lives, but seeing it in print made it suddenly seem more real. While this may not be a bad thing, especially if M.E. starts to be seen as 'real' by many who currently disagree, it has made the little bit of hope that this is just a bad dream die a little more. Just to be clear, I'm still hopeful and positive about improving. And I'm not so blind as to think that I can just wipe these years out of my mind. But it is pretty overwhelming and ignoring my reality is sometimes the only way I can cope.
Okay, so this post ended up going in a completely different direction from what I planned, but hey, that sometimes happens. And if you're curious, the book is 'Love and Devotion' by Erica James. Is it bad that I'm thinking I'll have to read more of her books just because of this?
Today I started reading the next book on my ever growing TBR (to be read) pile. It's a women's literature book and I've only read the first few chapters, but I just had to share a few sentences. The first sentence is from the end of the first chapter:
Five years ago Eileen had been diagnosed as suffering from M.E. and ... there was a limit to what she could do.Eileen is the main character's mother, so while she's not (so far) a big part of the story, she is in the main group of characters in my mind. So when I read the above sentence, I actually had to stop and reread it. Surely I had got it wrong. Surely the author didn't mean the same M.E. that is the debilitating and life-changing (and not usually in the good way) chronic disability that I live with.
And later on:
Eileen wasn't getting enough rest, and if that went on for too long, Harriet (the main character) knew her mother would be stuck in bed for days. ... Just as soon as she started to feel well and her energy levels increased she invariably overdid it and was back to where she'd started, feeling ill again.And my favourite:
...before M.E. sneaked its way into her life and sapped her energy...So why did these references surprise me so much? Because, other than books that are specifically written about M.E., I have never come across it in fiction before, and definitely not so casually added to the story. And as you know, I've read a lot of books.
While this book isn't 'new' (2004), I can't help but feel a surge of hope at seeing M.E. included in a book this way. It marks, at least to me, the idea that people in general are becoming more aware of it. When you live online, talking mostly to people with chronic disabilities, it's easy to forget that the rest of the world doesn't have much of a clue of what is happening to us.
In some small way it also felt like a validation. I know it shouldn't have, I know what I live with and what it has done to my life and to others' lives, but seeing it in print made it suddenly seem more real. While this may not be a bad thing, especially if M.E. starts to be seen as 'real' by many who currently disagree, it has made the little bit of hope that this is just a bad dream die a little more. Just to be clear, I'm still hopeful and positive about improving. And I'm not so blind as to think that I can just wipe these years out of my mind. But it is pretty overwhelming and ignoring my reality is sometimes the only way I can cope.
Okay, so this post ended up going in a completely different direction from what I planned, but hey, that sometimes happens. And if you're curious, the book is 'Love and Devotion' by Erica James. Is it bad that I'm thinking I'll have to read more of her books just because of this?
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