“She greets us as we enter the world; she is with us when we leave it. She is never more than a second away from us, as close as our own heartbeat; but when she does not stand directly before us, we cannot recall her face.
When she calls, loud and clear, we drop whatever we are doing and attend to her needs alone. At the touch of her hand we forget work, friends and lovers. She is the mistress of the universe. She is pain”

I first read Trader’s World by Charles Sheffield when I was about 14 or 15 and for some reason I memorised this passage so well that nearly 20 years later I still recall it.
..I guess a psychiatrist would have a field day with that revelation.

But isn’t it strange the way our memories work? How a smell, sound or an image can trigger them. The thing I find most strange is why are the unpleasant memories so much easier to trigger than the happy/ fun ones?

This is something that’s been playing on my mind a lot recently because whenever I have an ME/CFS flare up/ relapse or whatever you want to call it, those unpleasant memories boil to the surface at the slightest provocation. If this were me writing as I would 4 or 5 years ago I’d probably describe some of those memories to you in quite some detail; but I’ve learned a lot in those 4 or 5 years about the internet and over sharing so those memories can stay in my head for now.

But it’s not only personal memories that we seem to have little control over, I have tried for years to learn musical theory – I own (and have read) at least 5 books on the subject, had several friends try and explain it to me and through the patience of one of those friends (who drilled me endlessly) learned it well enough to pass the entrance test to a music degree course. ..But within days of doing that test I was back to not understanding a note on the page.

Some things you don’t learn or remember without constant drilling on the subject; other things you soak up like a thirsty sponge, but either way it seems to be some kind of luck as to whether it sticks or not.

I memorised hundreds of things when I was at school, and later on at college – but of all those things; soliloquies, poems, songs, technical information, it never seems to be the useful stuff that I recall. Which is a real shame because if I could recall everything I’d ever read or made a concious effort to learn then would. I. ever. be a force to be reckoned with!

Song lyrics I have no trouble with (well, songs I learned pre-CFS that is) At one point I knew so many songs that my peers nicknamed me ‘jukebox’ and would test me by throwing song titles at me and have me sing a verse/ chorus for them – if someone was trying to think of a song they’d tell me a line and I’d sing it back to them so they could remember; that was my ‘special talent’ I guess.

My interest is the web but my passion is creating things; jewellery, lyrics, website designs and content – I generate ideas for things on a daily basis that I have to put aside through lack of time/ energy or materials until some unforeseen future date..

..my worst fear is that I’ll never have the time, energy or materials for that future date to arrive.

It’s no secret that I’ve struggled with this year, I had to defer all of semester A which has in turn forced me to defer Semester B until next year – my year tutor made the observation that I would have been better suited to part time study but it just seemed like the wrong path to take at the time.

I’m struggling with exams especially; having next to no short term memory is bad enough but then having to deal with the demands of motherhood and family life, seemingly never ending episodes of fatigue and illness on top while attempting to cram technical information into a mind that seems hell bent on it going in one ear to travel straight back out through the other..

I keep reading, making notes, re-reading and it’s like every time is the first time I take in the information. It’s not so bad doing coursework because I know where I need to look to find my answers, but a test of memory – especially a 3 hour long test of memory (or 4 hours  in my case as I get extra time due to the illness thing) trying to find the little hooks, the triggers that will allow me to pull those answers from thin air – that’s the trick really.

I have to remember the quality of light coming through the window during a lecture to hear Guys voice in my head explaining the property in question, I need to hear the clatter of the canteen to picture the page I was reading about the description of such and such an effect. I have to be able to picture step by step the process used in a program to explain my reasoning – sometimes you can’t do that without the program in front of you; which is why I hate closed book exams with a passion.

In the real world I have all of these props to hand to help me trigger the flash of inspiration/ the required memory, in a closed book exam I have only my mind; the seemingly inaccessible hard drive with the faulty connectors that get even more faulty as the stress levels rise.

..and trust me, they are constantly rising.

We get the ‘look’ a lot from family, friends and colleagues; the look that screams at you that you’re just lazy, that you’re milking it so you don’t have to do X, Y or Z.

The look that says you’re a failure. that you don’t try hard enough to beat the condition, that you give in too easily, that you don’t do enough full stop.

Feeling that kind of unspoken pressure and budding resentment all the time is demoralising because it’s having your own thoughts thrown back in your face a hundred times over.

But that’s not the humiliating thing.

No, what’s humiliating is trying to live a normal life, trying to do it all and succeeding so well in the appearance of this that when you crash in class/ at work from pushing yourself so hard, you’re met with confusion, embarrasment and a feeling of complete and utter alienation.

Today was one such day for me.

I was sat in my PAWS class and I could feel a crash coming on, I’d managed to shut down the laptop and was attempting to pack up my gear in a race against time.

..but it was fairly obvious I wouldn’t make it, not without leaving the laptop and that wasn’t an option as I can’t afford to replace it.

To make matters worse as everyone started heading out to get to the labs for our next tutorial, a classmate made her way over to talk to me and I didn’t have the energy to respond, I just rested my head on the table and prayed that she’d shut up and leave me alone.

I was not to be so lucky, she started badgering me and then at my lack of response began asking if I needed a doctor or the medical center.. I responded NO.

(single syllable words are the limit when the fatigue hits, and only for a few minutes before even they deteriorate into grunts and sniffles)

She kept asking me and asking me – I managed to get out the phrase ‘I have M.E’ so she then started calling back all the guys into the room – all I wanted was the ground to open up and swallow me.

I knew the room was timetabled for us for another hour, I knew the crash wouldn’t last that long if I could keep calm and just go with it; unfortunately she didn’t.

I’m there slumped against the table, struggling against the tears of embarrassment and frustration leaking down my cheeks and dripping uncomfortably from the end of my nose and she’s doing everything in her power to draw attention to me.

“She says she has M.E do you know what M.E is? Vicky, what is M.E? Vicky? Vicky? talk to me, do you need a Dr? Do you want me to take you home?”

And this went on and on until I could force out another “NO, leaf ‘lone” which completely exhausted me.

I could hear the embarrassed shuffling and the muffled commenting amongst the lads, finally one of ‘em said “she wants to be left alone.. c’mon we should go” and to my relief, they left.

..The though of having to be in the same room as them all tomorrow fills me with dread, I know the lass will demand a big explanation from me and she’s the type to do so in the middle of a crowded room at full volume – this means even the guys NOT privy to my embarrassing physical breakdown will hear about it.

Oh the joys.

..But even that isn’t the worst part. The worst part was realising that I was alone, unable to move even my eyelids in a place my other half would have no clue to find me and that the people who had left me would not even think to tell someone where I was who could check my records for instructions on what to do for me.

If I could have said, “yes please take me home” to the lass, it still would not have made it happen.

I had a heavy laptop bag and I weigh just over 10 stone – all of which would have been dead weight as I was completely immobile; so how was this tiny lass to carry me and my bag down a flight of stairs and across campus, manhandle me into and out of her car to get me home?

I couldn’t even leave my chair and lie down without being assisted and I didn’t have the strength to ask for the help.

I had to stay in that awkward uncomfortable slumped position with the sun streaming directly onto the side of my face, listening to the comments about me from the people walking past the room laughing at the girl who’d ‘fallen asleep’ ‘had a rough night’ and just pray for the heaviness of the accompanying brainfog to drown out my humiliation and helplessness until the whole episode passed and I could summon the energy to get home.

I was there for 45 minutes.

The usual 10 minute walk home was a 20 minute stumble and I’ve spent the rest of the day in bed completely wasted from the effort of getting home with my bag.

So when people say that ME/CFS is ‘all in your head’ they’re right.

It’s in my head that for 24/7, 365 days of the year no matter what I do I can’t control what happens with my body.

No matter how healthy I look on the outside, in my head I’m worrying about days like today, days when I can’t hide that there is something wrong with me, days when I am at the mercy of every other human around me.

Days like today are the reason I have to force myself to leave the house and get on with things instead of hiding in my room like a hermit.

If I could get THAT out of my head I’d probably be a much happier individual as would every other person I know who suffers from this fucking illness.

But I’m not. I’m on my blog writing whatever pours forth – because I can.

I know all the theory on what I’m ‘supposed’ to be writing (and how) but to be honest, I don’t think I care any more.
Copyblogger is one of my favourite reads and I’ve soaked up a great deal of knowledge from his generous offerings but I’m not a marketer and I’m not a product – not yet anyway.

Until my course is over and I’m in the job market I really am just rosevibe here and I once had a fair few blog friends who came around to visit purely because I was me and not some one-dimensional tweeter.
I miss that, a lot.

Over the last 2-3 years I’ve amassed quite a bit of knowledge about the web, social media, writing, conversation, e-learning, project managing, marketing, programming and jewellery making, but because I’m aware of how much I still need to learn to be as good as I want to be I never seem to find the time to put any of it into practice (coursework excepted that is) and it’s been remarked on by a few of my twitter friends (*cough* @PhilWoodMusic, @crashbox *cough*) that I talk about things but never seem to share my work..

A link tweeted by the aforementioned copyblogger for a post by Rajesh Setty explains my lack of sharing better than I could – even if saying so assumes that I think of myself as smart.

(..and we all know by now that I don’t, if I was it wouldn’t be taking me so long to figure out how xml, xslt, wsdl, soap etc work! never mind installing php on my laptop.. still haven’t done that *shame*)

I have so many ideas and half-formed projects in my mind that I need to become immortal just to see half of them through – it frustrates the hell out of me that I don’t have the energy or health to get even one off the ground. All my energies are directed into my course and my family right now – perhaps if I didn’t have ME/CFS to contend with things would be different, but as it stands – I’ll be lucky to come away with the degree I want.

..but if I get less than a 2-1 I’ll be screaming the C-B words, muchly!

I get annoyed so easily these days – mainly by people who needlessly mock others; who take delight in the misfortune of folk in the limelight and seem to have lost any semblance of nobility, civility, honour and conscience.

I’m not a saint by any means; but constant finger pointing and mob rule alongside the ‘reality shows’ and our rotten society as a whole.. it sickens me and makes me want to grab the face of the self satisfied wanker behind it all and ram it full force through the nearest window into a rusty spike.

I know.. a tad graphic – but I can’t convey the depth of Grrrrrrr! and Arrgggggh! that I feel when looking at what the people of this country have turned into in the name of multi-culturalism and political correctness when things like that are condoned and in some circles elevated to the height of fashion, wit and branded entertainment.

Now the beloved is pointing at the clock and ordering me to bed so I guess it’s probably for the best if I leave this here before I get truly riled and kiss off any chance of sleep.

..But, even after the revamp – don’t expect this blog to fully reflect my knowledge and experience, its a personal space and so will more likely reflect my feelings and opinions with the odd sprinkling of ‘professionalism’. I’m not focussed enough on one area to create something professional for myself, I’ll leave the professional stuff at work where it belongs – or create a section of the site for it ;0)

G’night all – if you love me, do me a favour and tell me something wonderful about the world, after the tv viewing and general crapness of our world on the surface, I could do with a glint of glory about this year to carry into the next.

love y’all

Vics Xx

That’s right, when sat face to face with them all he just couldn’t wait 3 days LOL

I’m just amazed he held off this long – I’ve been dying to tell all those people not in the know *rubs hands in glee* I can just see the fear on their faces now..

Me: “We’re BREEDING!”

Them “NOOOooooooooooooooooooooooooooooooooooooooooooooooooo..”

It’s a DNA cocktail the likes of which even Mohinder Suresh would quiver to see. Truly this is the DNA melding of doom.

And we couldn’t be happier.

Newt may not have been planned for for a couple more years but he or she (we think he) is the luckiest kid on the planet and we’re chuffed t’buggry about it. Everything happens for a reason remember

I have to say though – there truly is NOTHING pleasent about pregnancy, it’s actually very similar to early stages CFS/ME as far as the worry and constant tiredness goes, the sickness is basically just like Menieres disease (only without the vertigo and deafness) so all in all I was well prepared for the expected physical nastiness.

But it’s weird. I’ve been able to feel my insides moving around to accomodate everything, even though I’m barely showing I can feel the weight of it all being distributed differently when I’m lying down – and it makes for an uncomfortable nights sleep I can tell you; first on the shopping list is definitely a body pillow!
Thankfully the sickness has died off a tad so I’m not retching at every noxious smell that crosses my path (that was embarrassing) and the whole ‘boob’ thing has settled down. I’ve basically been living on fruit, cereal, potatoes and vegetables because I couldn’t bear the thought of most meats, cheese, pasta and (believe it or not) chocolate or cake and I’ve gone from massive plates of food to kiddie portions. Chocolate has been the first thing to sneak back into the diet since the morning sickness began to wear off, but I still can’t face the rest and don’t know if I ever will again!

The thing is, NOW.. Oh yes.. NOW the cravings have finally arrived.

Last night, around 10pm I went and asked the father of my child what time the local shop shut, he replied ‘now’ and I nearly burst into tears. I wanted original flavour Pringles and I wanted ‘em BAD!

He on the other hand found it hilarious, here we are in a house that has more pickled goods than you can shake a stick at (his mum has an allotment and they freeze and jar their own veg and sauces and preserves) and I don’t want the traditional ‘pickles and ice cream’ I want crisps – but not ANY crisps, I’d already been through the cupboards and rejected everything in there, I knew what I wanted and just as you’d expect, we didn’t have any.
But I mean.. of all things! PRINGLES!?! ..And original flavour to boot! C’mooooon! the lad is supposed to walk the ends of the earth to find me granite flavoured ice cream or peel spuds at 1am so I can have chips and maple syrup. But no – I wanted Pringles, it’s just so disappointing.

Mind you, I’ve come to the conclusion it’s all down to your subconscious kicking off with the nesting thing so you stock up on stuff – now that I have pringles in the house I don’t want them, instead I want chocolate mousse/ dessert/ pudding or whatever the sauce stuff in those cadburys pots is known as. Basically, if you haven’t got it in the house and can’t easily get hold of it – you’ll crave it.
Which sucks.

Still, we’re REALLY looking forward to Tuesday and our first glimpse of Newt, we should even get to hear his little heartbeat – I’m so excited! Expect many ‘mommy blogger’ type posts on here in the future because it is literally pretty much all I can think about. College have been great about it and Nick, my year tutor, has already put into place some options for next year – but that’s a whole other post because right now I’m off to bed – building a baby is bloody knackering y’know!

My feelings can also change as I write, when I started writing this last night on that first bit of paper I was upset, very upset. As I continued to write furiously I became less upset and more resigned (but I’ll get to that shortly)

I read a lot and some of the things I read can affect me in a rather profound way, it may only be a paragraph or a phrase as opposed to the whole book or article but occasionally it can strike a chord and leave me with a feeling of.. ..’deep connection’ is the only description I can come up with that ‘feels’ right.

This book: ‘The bridge across forever’ by Richard Bach,  touched a part of my brain, it evoked recognition and brought something to life – a connection/ stimulus that made me feel as though I’d grown in understanding, that somehow just by reading it I’d enriched my life and like a true convert I wanted to share that feeling with everyone who knows me.

I know it’s a work of fiction but the ideas are contagious, the central theme of finding your soulmate is deliciously seductive and resonates within the girl I used to be – it unlocked long abandoned yearnings and a desire to better myself and my love.
I too wish to grow and share that growth with another, it’s a journey I started envisioning for Stef and myself, smugly assuming we were well on the way as I found myself trying to fit our relationship into the dream offered between those pages.

As I finished the book I was filled with an overwhelming NEED to blog about it, when that kind of mood strikes it’s almost painful in intensity, it doesn’t happen often but when it comes it’s like a bolt of lightning coursing through my brain and I have to earth it with the act of writing.
When it’s like that I can’t eat or sleep or do anything because I’m so focussed on that urgent desire to capture my thoughts before I lose them and when that mood is upon me I write golden. I write until there is a ‘snap’ inside my head, that snap is the sense of rightness, that all the words are home and in the correct order, it’s the world clicking back into place because I’ve added something to it, I’ve made the intangible tangible and the satisfaction I feel after one of those sessions is the BEST feeling in the world.

Which is why I was upset when I first put pen to paper last night to write this, I’d rushed upstairs and after ascertaining that Stef was merely upping his stats on monstersgame I asked if I could just take the pc for 10 minutes, I explained that I just wanted to get down a blog post and that I needed to get it all down while my mind is churning out all these thoughts and realisation.

He said ‘Do it tomorrow, it’s only a blog post’ and that one sentance shattered the hope that we already had something as magical as the couple in the book, that we’re well on the way to perfection.
‘Only’ means ‘unimportant’ means ‘worthless’. He has often denigrated my blogging habits yet after 3 years I expect him to understand how important it is to me.
My blog encapsulates my identity as no other medium can, to have it disparaged so easily hurts because it’s ME being put down.

That’s basically saying ‘your thoughts are worthless and unimportant, pointless and stupid, they can wait’. An attack on my blog is an attack on me.

Logically I know he doesn’t mean it in that way but I’m an emotional person and I feel before I think, which is why I write my thoughts and feelings down, it gives me the opportunity to put things into perspective and see things from both sides.

I had the time with my pen and paper last night to realise that I just rushed into that room and demanded he drop everything he was in the middle of to let me do my thing, I can be selfish – very much so. The fact that he didn’t recognise my NEED to write is understandable, he doesn’t ‘get it’ just as I don’t ‘get’ his seeming addiction to games, to me, blogging is a worthwhile expenditure of time online as there is a visible product at the end of it.
I think Stef views it as vanity, a pointless exercise – which is how I view most of the games he plays. It’s one of the main differences between us and I don’t think either of us really accepts the others point of view on the subject.

I want a Richard and Leslie relationship like in the book (though I can live without the lucid dreaming and out of body stuff) I hope that we will learn to understand one another better, that, close as we are, over the years we will grow closer together and learn from each other, we’ve a way to go yet but the foundation is there and it’s strong. I just hope that in the future, instead of having one person become the superior, we can be equals who delight in the company of a different yet beloved mind.

But then isn’t that what every thinking person should want from their relationship?