But I’m practical. I chose IT because it allows a career that (hopefully) pays well and will work around my illness and family life.

Jewellery making and web design were the 2 ‘skills’ I had to choose from when I was planning out how to escape the benefits trap of the long term sick; the web seemed the likeliest method of gaining a decent income without a large financial layout.

I know that in the current climate having those benefits offers a type of security that working may not – especially in view of my health (the whole reason I’m on ‘em in the first place) some healthy folks even question why I’d bother since I’ve ‘got it good’ right now – I’m lucky they say.

..and I agree, in comparison to some families we’re doing well and ticking by.

But I’m fed up of always ticking by. I’m sick of the uncertainty of renting a pokey flat that we’re getting too large for by the day. I’m sick of not having the cash for a decent holiday or to buy the gifts I’d like or to make the things I sketch out and put in the ‘someday’ file.

Unlike a healthy person, being long term sick offers you no hope of improvement, no hope of progressing up the food chain, you’re stuck living on handouts and state charity and that SUCKS!

I dream of having a decent sized 3 bedroom house (all doubles of course) I want an office/ workshop at the bottom of the garden and a garage. I want the space to be able to grow my own food – not on a self-sufficiency level, but enough to supplement the odd dish. I’ll never be able to get that on state benefits.

I listed all the things I wanted from my ideal lifestyle and showed it to Stef; he laughed.

Apparently I want to be his parents – but with hobbies.

To be honest I don’t know why that was a cause for laughter; his folks are great – they work too hard in my opinion and could use some hobbies for downtime, but otherwise sure; I’d be them. Just more up to date *grin*

..and I’d be able to do any of this with my daughter;

• start a small craft club and have monthly meetings/ workshops
• create and sell tutorials from my own e-learning site
• create websites for small businesses and families
• have time and materials for serious crafting
• maintain a small kitchen garden
• throw parties

(assuming she wanted to)

Doesn’t that sound like the life to you? THAT’S how I envisage someone who’s ‘got it good’, I’m just trying to get there the best I can.

“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.

Explaining ME/CFS to ‘normal’ people is difficult because there is no frame of reference, you can try the usual

• ‘imagine you have a hangover combined with flu’
• ‘imagine you just got run over but had no visible injuries and were expected to just pick yourself up and push through it’

Those kind of scenarios are not a good explanation.

How many people get drunk enough to have a hangover if they are already suffering from the flu? and who really knows what it’s like to be run over unless it has actually happened to them?

Normal people will never understand unless they get it themselves.

A geek on the other hand will instantly understand if you tell them that the human body is a laptop and when it gets ME/CFS that it may have contracted an invisible worm or virus that has changed a couple of registry keys and moved a few system files.

Now things don’t work the way they once did, programs crash for no apparent reason, it runs hotter when there’s no program on the go and everything is just so much slower and harder than it was before – it looks fine, all the virus and adware scans have come up empty but you know there is something wrong.

Even the battery fails to charge, it only ever makes it to around 10% even changing the cable or the way you use it has no affect on the constantly annoying pop up saying ‘please switch to mains’ – some days it doesn’t even start up at all even though the power light blinks at you to show there is life in there somewhere.

..but the casing still looks brand new and you’d never know there was a problem if you hadn’t used it previously – you’d just think it was a crap laptop.

So how do we fix this?

Sadly we don’t. Humans don’t get a re-boot or a re-install, we can’t save our memory to a backup system and when things start breaking down completely we can’t mend it with a new one (well, mostly)

We are stuck with this computer for life; We can uninstall a few social apps and conserve energy by shutting down the least essential processes, but basically that’s it.

Sucks to be ME huh?

Yet now I have a life again I have even more to say; but because of the ME/CFS my time is too precious to spend blogging about it.

I miss being able to sit at the keyboard and carefully shape my posts out of the initial ‘stream of conscious’ draft; I especially miss the comment conversations I would have with the folk like you who took the time to stop by and connect with me.

These days twitter fills that void in part – but it is nowhere near as fulfilling a feeling. I think any of you who like to write as I do can relate to this, the feeling of ‘rightness’ you get when the last edit has been made and you know that your words are in the right place to express your meaning; how it almost ‘snaps free’ to become a living thing in its own right.

..But perhaps that’s merely my fey side talking; I have been told that on occasion I can be a little ‘weird’ (though mainly by my other half, he’s good like that.. )

My time these days is split fairly evenly between family life, coursework and whatever tasks the blended learning unit set me. It’s a fine balance I have to walk in order to manage all of this; but the difference between then and now is that even if I do too much and relapse (which has happened twice this last week alone) I still manage to carry on.

I know that a traditional 9-5 office job is beyond my capabilities; not through lack of skills or cognitive functioning, but because of the physical limitations this illness has placed upon me. But a ‘real’ job is no longer beyond my grasp.

I am seriously dancing inside with this knowledge – ME/CFS has not taken my life, it hasn’t denied me anything; it has merely given me a focus and a determination that propels me to greater heights than I’d ever before dared hope for. This time next year I will be a graduate – hopefully with a Bsc IT(web based systems) 1st (but another 2:1 will have to suffice if that plan falls through)

I know that I have several options before me; freelance web designer/ technical author or even as a part time lecturer should I make enough of an impression on the uni during my time there.

My work with the blended learning unit is a hopeful step in that direction;

• I’ve given two lectures on wiki use and best practice for group work within the UH studynet environment
• I’ve created several handouts to complement these lectures
• I’ve received positive feedback about these sessions and a request from other departments for similar help

A simple thing perhaps, but one that is obviously needed as the facilities available to the students are widely underused. With e-learning gaining such a large profile within the academic community, these experiences can only stand me in good stead when the time comes to search for employment.