The geeks guide to ME/CFS
January 11th, 2010A conversation with @elmundio87 got me thinking earlier;
A conversation with @elmundio87 got me thinking earlier;
I should be writing a follow up about my experience at #mcl3, or completing any one of the numerous draft posts I have lined up in the blog back room..
I’m obviously at a loose end what with uni being so slow and my course load so light [/sarcasm] so I’ve agreed to take a session at the forthcoming MediaCamp London 3 (twitter tag #mcl3)
Perhaps this post should really have been entitled GTD vs the Real Time Web..
Most folks are aware of the GTD method created by David Allen and coming up fast behind in the awareness stakes is the Pomodoro technique created by Francesco Cirillo.
When I first started this blog I had no life; I was working every hour god sent and a few more to boot until I really had no life because the ME/CFS took it away. I had a great deal to say and a great deal of time in which to say it – even though most of it was waffle and has since been consigned to the ether with a click of the delete key.
My run ins with the Manchester city council Revenues and Benefits Unit have sadly been many and incompetance is the most I have learned to expect from them over the years.
I’ve been culling posts left right and centre from this blog so that I can ’streamline’ the content when I merge my other blogs to it during the (hopefully soon) site redesign and update I’ve been working on. Doing so I’ve discovered many things; not least the changes in my writing style and the tone and content of the posts themselves.
My immediate family have always been amazed at my ability to live quite happily on very little income – in fact the most miserable I ever was was when I tried to keep 2 jobs going to garner more disposable income. I know this as recently I’ve been culling old posts from this blog and 5 years ago I was miserable, stressed, run down and incredibly overworked and as a result developed ME/CFS.
I’ve managed to complete my foundation degree with flying colours and yes I’m damned proud of myself.
I’ve spent today at the 4th international blended learning conference at the University of Hertfordshire.
Physically I am very lucky; despite my grumbles my natural body shape falls within the bounds of curvy as opposed to noticeably overweight – even post-pregnancy. I eat healthily and try to avoid stress as much as possible because stress exacerbates my condition. All of which lends itself to the physical appearance of a healthy young woman.
This is a post about future developments in HCI from one of my studynet blogs. As my HCI exam approaches I figured – why not use it here as well? There are many of you twitterers and facebooky types interested in this too, no need just to share thoughts of this nature with the studious ones counting down to May 13th..
I try to be a good person, truly I do but maybe I’m going against human nature and that’s why I have to work so hard at it.
I really can’t wait for this next month or so to be over – on the one hand YEY I’ll have completed a foundation degree in IT for Multimedia and I’ll be hopping stright onto the third year of a Bsc (hons) IT (entertainment systems) degree in September because my grades are high enough that even failing my current crop of assignments won’t affect automatic acceptance.
I promised my twitter followers a beading post a while back, and since getting the flip I’ve been promising a video blog so.. Ta-dah! 2 birds, one badly filmed stone *grin*
I was asked today to come back to the college in June (after exams etc) to give a presentation on twitter and other social media applications, this has made me go back to thinking about what is so great about twitter – why do I and others enthuse about it so much?
I’ve just recently added another plugin to this blog because I want to start adding video content (without uploading to youtube first) I know I’m a tad late coming to the v-log sphere but better late than never eh?!
I have the opportunity to progress onto the third year of a Bachelor of science honours degree next year.
However, I’m not sure if I will get the funding to do so because of my wasted year on the BA(hons) popular music and recording degree at Salford university in 2001.
Back in 2005 I was getting to grips with ME/CFS and how it had changed my life, things were pretty bleak: Read the rest of this entry »
I’m currently in the process of sorting out a website for my ‘final’ year project, I’m using wordpress to create a site for a peripatetic music teacher based in Surrey (who just also happens to be my best friend..)
Whilst browsing a couple of jewellers forums I came across a link to a course in silver metalwork at college lane in the evenings (My uni campus which is luckily walking distance from the home) as well as a kiln fused glass course, for the fantastic sum of £175 each.. If only I had more time and energy *sigh*
It’s been soooo long since I’ve done something this bloggy (as in community of bloggers type bloggy) I saw this on the LittleBead blog (which I found following through from her twitter page) who got it from Swirly and despite not knowing the lass (though I’m now following on twitter, gotta love the fellow beaders on the web when you find ‘em) I’m going to do a meme.
I know, it’s taken me quite a while but to be fair I’ve been snowed under with work between now and then..
This is the song that has been running around in my head for DAYS! Kill me, just kill me now.
No this is not going to be one of those bah humbug type posts – i’m not allowed to bah humbug anymore – I have a child, I’ve now got to embrace the joys of Christmas and foster a belief in santa – something that may eventually lead to a schoolyard kicking as said belief disintegrates, but why borrow trouble eh? We’ve got a good 3-4 years before that happens – and anyway, I’ve found a place that teaches kung-fu to kids..
On top of my coursework I’ve joined the University Cable 3.0 project team, we’re trying to organise collaborative online learning between members of the 4 consortium colleges studying on the Foundation Degree Business and Computing Programme.
I’m now back at college full time and really playing catchup as far as my assignments go. As well as a research project to write, I have java program to create and 2 websites to build; one for my work based learning project (which is why a few twitters have been about gantt charts and project proposals and the like) and the other is to be for a childrens charity – which is why I’ve chosen to highlight AYME the Association of Young People with ME.
I’ve been dipping in and out of the blog and social media ’scenes’ for a while, I *know* all about how I should be optimising my website for search engines and keeping my posts organised, concise and FOCUSED – but I am not a brand, I am not a company, I am a jewellery making, blog writing, new mother and student geek, so on what am I supposed to focus?
A couple of weeks ago my technology hating brother called me to talk him through opening a work document his girlfriend had emailed to herself.
My T-mobile contract is up for renewal, I currently have an MDA Vario (aka HTC wizard) and It’s done me proud for the last 3 years or so – but a shiny new toy has caught my eye and I feel it’s time for a change..
In July I went along to an event organised by some folks I’ve come to know through using various online social media. As a direct result of that I have been offered work (paid) and participation in several interesting sounding projects (paid and unpaid) which, sadly, I’ve been unable to take up because of this gorgeous little creature
The person who first described breastfeeding as a marvelous bonding experience has a strange mind to my way of thinking. Through the experience I’ve had over the last 5 weeks I’d say it’s more akin to shock treatment!
Well, we’re now home for the second night with our beautiful little girl. She’s like a cross between ET and the baby octopus thing from Men in Black that spews all over Will Smith.
RAH!!!!!
Yup, talk talk finally came through yesterday evening so I’m back where I belong: in front of a computer screen.
It’s been pretty hectic since the social media conference, I’ve had furniture delivered, a plumber round to fix ’stuff’ attended an antenatal class with Stef and been to a wedding; after which I had the biggest scare of my life..
I’m not able to speak for everyone else who attended but as far as my first social media event goes, what an absolute corker! The discussions were stimulating and the topics interesting, I’m just sorry that I couldn’t get into all of the sessions but the building was just too hot for me to risk cramming into the busiest ones as I’d doubtless have passed out and made a tit of myself..
I’m really looking forward to mediacamp london, I’ve already spread the word facebook style but as it gets closer I’m getting all a-jiggle about it. This will be my first social media event and I’m just really looking forward to soaking up the atmosphere, conversations and hopefully learning something in the process.
I was going to drag Stef along with me as I think he’d find it interesting too but he’s got a stag do to attend so I guess I’ll be all on my lonesome – if any of you are about and at a loose end on July 5th, come down to the SAE Institute North Road, London and say hi to the dark haired fat chick waddling along the corridors – ignore any muttered curses from her direction though, that’s just a side effect of pregnancy when the unborn brat decides to use her guts as a punchbag..
..Can’t stop smiling!
Today has been a GOOD day! I finally won a nursing chair and stool set on eBay – I’ve been after one of these beauties for weeks but they keep going beyond my limit, today I not only won the auction I got it for half the price all those others had gone for – under £50 in fact.
Stef and I have spent the last week or so trawling autotrader and the like for a decent family car to replace the fiat coupe monstrosity he currently cherishes, as part of this mammoth undertaking we also visited a car auction on Saturday. Armed with the parkers price guide we wandered the lot and argued the merits of dozens. It was a strange experience, not the least because we’re really not sure as to the type of car best suited to our needs – I had to pull the salivating lad away from the tastily priced Jag with the reminder that it wouldn’t be as pretty when covered in baby sick..
Yesterday I paid up the admin charge/holding fee for a flat in Hatfield. In a weeks time the credit check and vetting process should be complete and I’ll be picking up the keys and signing a contract – assuming no problems of course..
I know, I’ve been a bad blogger, in all honesty I’ve not had the taste for it over the last few months because so much of what I want to say can’t be said, not here, not online. That’s the downside to having a personal blog, every post has consequences. Since becoming pregnant I’ve started culling earlier posts for just that reason – amazing how our views change about things as we gestate eh?! Also lunarpages have had a disturbing amount of downtime over the last few months so even when the taste or urge to blog has been strong, access has not! it’s just fortunate I’m not looking to earn a living from this blog otherwise I’d have been down a fair few sheckles as they sorted themselves out which is why I’m currently looking at other hosts for when I’m due to renew.
In this age of instant information we’re all aware of how the media struggles to keep up and ‘beat the competition’ unfortunately this can become an irresponsible obsession.
Gloria Swanson is reputed to have said
My mother and I could always look out the same window without ever seeing the same thing
The fellah and I have been invited to a gaming weekend in reading this week – featured will be the eagerly awaited Rock Band *happy dances*
..I wish *sigh*
Half the interesting ‘new media’ apps are USA based and every website I’ve looked at for things I’ve considered purchasing of late are ’ship to US only’ sites *sniff* ah well, I’ve taken to collecting pretty pictures instead with which to console myself. Let’s face it, I’m unlikely to have the cash to spend on pretty things soon, everyone seems determined to tell me how expensive childrearing will be – like I hadn’t already figured that out for myself!
I’m a typical girl in only one respect; I like pretty sparkly things of the jewelled persuasion but no matter how much perusing of the net and local jewellers I may have done I’ve never really found a gem that makes me go ‘OMG I MUST HAVE THAT!’ at least not until today.
I was just ‘chatting’ to a few of the lasses on the birth forum I joined about dreams and how vivid and scary they are at the moment. I tried to explain that my dreams have always been like that and turned to this blog for an example – which is when I became sidetracked.
It was an interesting evening, not the most auspicious of starts seeing as I was lying there thinking “ugh what a waste of time, I shouldn’t have bothered” but then I’ve never been able to ‘get’ relaxation exercises where you have to close your eyes and imagine a string pulling your head straight and the breath cycling through your body.. You know, the ‘ball of light’ type of exercises – I do have a cracking imagination but for some reason all I feel is daft and cynical when I hear that kind of talk, it doesn’t relax me it just makes me feel uncomfortable and out of place.
I’ve been tagged
I’m currently sat in the ‘career planning’ lesson (most pointless lesson on the currculum) and I’m supposed to be blogging on studynet about: Read the rest of this entry »
I’ve emailed and facebooked and sent texts but have just not found the energy to blog about it until now – can you believe even STEF beat me to the blogging?
Ok, to fill you all in on just why my posting has been pants for the last few months and why I’ve been so ill and why I’ve barely posted anything else. You see, when you have something big happening in your life it’s all you want to write about – especially on a personal blog like this, but no..
My beloved has been adamant that we shouldn’t tell people our news until after we’ve had the first scan and know for sure that everything is ok – I’ve not been able to blog or stay online because it’s just too hard to keep the secret to myself, but Friday night he went out with all his male cousins and they got to hear the news in the pub – even though we won’t be going for the scan until tuesday..
We went to visit my folks during reading week, while we were there the subject of my writing talent came up again (as it usually does when they start discussing what I should be doing with my life – family eh?!)
The latest college assignments had me chuckling; first of all we have to keep a career planning blog, they’re trying to initiate some sort of micro social network within the group with these – at least that’s how it seems. They all have to be public, we are all supposed to keep up to date with each others progress and comment on that progress, they also want us to participate in polls and discussion boards.. This would be all fine and dandy assuming the techie responsible for setting up these career planning blogs had made it possible for us to add new entries *grin*
Seems I should check my paperwork more carefully, I’m still fully hosted right up until june YEY!
*grin*
I said to Stef on new years eve that I’d not made any resolutions this year, but as I sat down to write this post I realised that I lied.
Hurrah! for internet shopping say I.
Yup, aside from the beady goodness recently purchased from Hobbycraft (just a little hint there for my female relatives, that’s right it’s home made jewelery for you again this year *grin* learn to love it!) Christmas shopping online was practically finished by the end of November, that makes me very happy.
Today I woke up smiling. I was warm and wrapped in loving arms and the tendrils of sleep still clung to me, carrying over the image of paradise from my dream.
I’ve been following the You & Yours spot about ME/CFS on BBC Radio 4 out of idle curiosity, I’m not expecting any great shakes from it but it’s certainly pulling a few cockroaches out of the woodwork..
For video or flash tutorials Tutorom really is the place to be. I found this while catching up on my feeds over at Cybernirvana it’s proof positive of why I keep Zia at the top of my info list *grin*
Been thinking a lot about life and religion lately – don’t ask me why, these thought percolate through my head on occasion (especially if I’ve spent a lot of time confined to bed)The conclusion I’ve come to is that I think I do believe in God. Not your God of course, because they way I see it no matter the title, nobody has the same God, even if they give him the same name and worship in the same way, we all view her differently.
I saw this posted in the comments of a blog post by Mediajoltz and it got me to thinking.
There are times when everybody just wants a hug, it doesn’t always matter where the hug comes from they just need to feel the close physical presence of another person and the comfort it brings – you don’t even need to be upset or worried about anything, there’s just something in the human make-up that craves physical contact.
It’s been a mad couple of weeks all told.
There was the rush up to Manchester to make sure all the funding for my course was sorted, it would have been simple and stress free had it not been for the time stood at the side of the M6 in the pouring rain with a non-functioning car - Andy will always be my saviour for driving down to pick us up so that I could make that appointment.
That’s right, yours truly is returning to college.
You and Yours:How has the internet changed your life?
Broadcast on BBC Radio 4 – Tue 04 Sep – 12:00
I’m thinking there must be something in the air, bloggers are giving away a tonne of stuff for free!
Well, not exactly for ‘free’ but there’s many a ‘blog about this and you could win..‘ type post knocking about at present. The first one I noticed was for a game – a very pretty game called Quartile I chuckled to myself and sent a tweet out about it, it looks like it could be interesting to play and if it truly can help you with mental arithmatic then it’s something I could definitely do with *grin*
I had an almost argument with my Gran the other day, it’s one we’ve had before because it’s a subject on which we both have strong and opposing views.
A while back Sean Fisher asked to interview me as part of his journalism coursework, he wanted to ask me things about ME/CFS and how it affected my life.
Sean was actually living with me when I first came down with the illness so he knew me before, during and after and has seen first hand how debilitating it is and just what a change it makes to a persons life – which is why I agreed, I hate to talk about those things normally because I cry, just thinking about it makes me cry – I hate crying, especially in front of other people so normally I’ll either avoid the topic or make some throwaway statement before hastily changing the subject.
(and yes I did try moving the ‘dot’ before you point that out HK *grin*)
On 8/30/07, Matt Cotter < Matt@dimacc.om> wrote: Read the rest of this entry »
We got back to Manchester sometime around 3am Wednesday morning, I have to say, I missed my pc.. Not because it’s a great pc – far from it, but because it has all my files and bookmarks in situ, which is why today I sat and weeded out all the useless stuff and dead links I’ve bookmarked over the last three years and added both ‘bookmark duplicate detector‘ and ‘Foxmarks bookmark synchronizer‘ to my list of ‘must have’ firefox add ons.
I’ve always written down my thoughts and my feelings, many a time as a kid and young adult I’d sit up late at night scribbling notes into a diary or onto a nondescript pad of A4 paper. Having a blog has just made the process easier, typing is quicker than writing and I can capture my thoughts more fully, editing is simpler; merely a matter of highlighting text as opposed to laboriously copying the same thing over and over again as I refine the message I’m trying to get across.
I saw on this mornings news that we apparently lose at least one friend a year.
This means I must have been really careless along the way because I’ve lost far more than that over the last 4 years.. Meh, this move should rectify that little oversight.
I’m not entirely sure why but this blog has had an explosion of visitors of late – I can only assume twitter and the socialset site have something to do with it..
I signed up with Peopleized in order to suss out it’s potential in the social networking stakes and decided that it doesn’t matter, it’s kind of fun and interesting in it’s own right – as are the people already registered.
I’ve spent most of the evening writing and re-writing a question on twitter over at the socialset blog and this post is kind of an addendum to it..
I’ve been boning up on social networks and the people who run and use them for a few weeks now and I’ve barely scratched the surface – even though I’ve been using these sites myself for years.
I’ve just come across this site and I have to say.. What a brilliant idea.
The redfootrevolution is here. There is nothing worse than that crippling sensation at the end of the night if you’ve been wearing heels – I was recently reminded of this after wearing an old pair for the first time in over a year.. Ouch.
I’ve discovered that I’m still not completely weaned away from my net addiction. We’ve been camping and not only did I have a complete lack of phone signal (which didn’t really bother me too much) but there was no internet – that did bother me.
I’ve been at my dads all week – hence lack of posting or general web presence. You see my dad is still using BT for his net connection – and it’s pants! That and his pc needs reformatting and basically mending with a new one (which Stef will be doing as soon as I get off here)
You know, I’ve never ‘got’ the whole ‘web 2.0′ thing. I know there’s a big hue and cry about it, anyone who’s anyone in the net media seems to be throwing out kudos here and opinions there about it but really, it’s just another buzzword.
It doesn’t mean a damned thing – if it did the average surfer would understand what it means instantly – but we don’t.
To Laura-Jane & Allan.
It was an absolutely fabulous wedding on Sunday – so fabulous in fact that it’s taken me until today to recover from it *grin*
I started today with a bad CFS/ME attack, Stef once more had to do the carrying to and from the bathroom thing because I couldn’t physically move, grunting was the highest form of communication at my command and I felt like crap. I’m still aching to buggery and I’m soooo tired it’s untrue.. But I don’t care.
I know, I’m supposed to be working at becoming a better person yada yada yada. I can’t help it though.
As most of you know I had this blog over at blogger originally, I remember when RSS feeds were the new shiny thing to come out and everyone was talking about ‘em. At that time though, I didn’t pay much attention because I just didn’t ‘get’ what they were or what was so good about them.
Twitter is better than any of the social networking sites for finding like minded people to ‘talk’ to, it’s even good for finding random strangers to follow just for the sake of procrastination, The only problem is.. You then start ‘talking’ to those random strangers and develop a relationship of sorts.
As an example, when I first signed up with twitter I’d follow the public time line because of the novelty and a few comments piqued my interest enough to make me ‘follow’ a random stranger – that was Dan.
Nik aka loudmouthman has become my net pusher.
I have a rather acute sense of smell that can, on occasion, cause problems.
Usually it’s while on public transport, squashed in among the general unwashed and fighting the urge to heave..
It’s odd isn’t it, that we can appear one way to to a vast majority of people online and yet somehow, should we meet those people, the way we appear is almost totally at odds with that former representation.
I’ve realised I’m a nice person.
No.. Really. Stop laughing! I am. I have proof.
My werewolf received an email from a high yield victim (vampire) to ‘plz stop attacking me’ and I was hit with a stomach churning sense of guilt – even though the whole point of the game is for me to hunt and attack members of the other species.
We went out for my Grandads 65th birthday on Saturday.
It was a pretty good night. Average meal in an ok restaurant followed by an evening at the Grosvenor casino – where my soon to be married cousin LJ decided to try her hand at every game *grin* it was most amusing to watch as the croupier tried to guide her and her fiance through 5 card stud poker.
Every other comment from the poor lass dealing was ‘please keep your cards on the table’ as they leaned back to ask all of us for advice on what to do. She was very nice about it, as were the other couple at the table, she even offered advice on when to fold because they obviously had nothing.. By the time they’d had enough there was quite a crowd gathered around for the show. Though that could just have been LJ’s presence since she is a bit of a stunner and tends to draw a crowd of admirers where ever she goes..
Dad won at the roulette as usual and even we had a flutter – got our taxi fare home so all was well. I don’t think anyone we were with came away with less than they started with (except for Pippa, she learned that she should really never gamble *grin*) so all in all a good night.
It’s da bomb!
*grin* Sorry, I’ve been re-living my musical youth this afternoon. (in a none ‘pass tha dutchi’ sense..)
Pandora radio is based on the music genome project: Read the rest of this entry »
You see, my previous post was just a fly by thought, since then a few more things have occurred to me that tend to confirm that thought as a valid one.
Seriously, that thought just raced across my mind as I was looking around for new things to put on my blog. (you know, toys as opposed to content – I’m selfish like that)
Woohoo! Right, that actually turned out to be easier than I thought – why I kept putting it off I don’t know..
There I was having a pretty interesting dream when, as it dissolved around me, I was forced to realise that the sound of ‘More than a feeling’ by Boston was not in fact coming from the car radio of my dream but was actually reverberating around the bedroom through the floorboards.
I know I’ve mentioned freecycle before, it’s a website where people post items they’re giving away on a first come first served basis. I’m a member of the manchester board and in this mornings digest there was a corker of a wanted ad: Read the rest of this entry »
Oh yeah – that’s a heading to grab your attention isn’t it? Men!
Actually, this post has been prompted by a link my fave Ubuntu tech posted on twitter, it had me doing an idle search for a costume after joking to Stef about maybe doing that for the next fancy dress party we attended.