I feel it like a tight little presence in my head – as though it’s an inflatable air bag around my brain that is always there but instead of air it inflates with stress. When I feel that warning tightness I know I need to take a step back and chill out or I’m in for a really rough ride on the illness front.

But how do you do that? How do you take a step back? How do you stop the stress from taking over?

For me distraction is the key. I’ll sit down and make a to-do list for everything that may be causing the stress to kick in, then I’ll turn on the karaoke and sing for an hour or so – or I’ll read a book or watch a few episodes of some show I like on dvd.

Yes, that may seem counter-intuitive if what is stressing me out is work that needs doing to a set timescale, but believe me it works; it clears the decks so I can then focus on the items on my list.

It’s a 2 part thing really; making the initial list while you are stressed starts the process – it feels like you are addressing the situations that are stressing you out which helps you feel in control which helps you calm down enough to take the 1-2hr breather (or even a full day if you really need it) this helps deflate that nasty tension to the stage where it’s easier to focus on smaller tasks without being overwhelmed by the big picture.

That’s the real trick; making things less overwhelming and more manageable.

You have forms to fill out?

1. Do the easy stuff like photocopying evidence and filling out name, address D.o.B, and NI/SSN on all of ‘em in one go first.
2. Take a singing/ film/ book break
3. Write out the other info you need and check it against your evidence.
4. Take another break then check it all over again before photocopying and do your best not to think about the outcome of your form filling, stay in the moment and do one task at a time.

After the task is complete and you’re inevitably back to stressing about the outcome/ future; take another break – have a bath and try to guestimate how long you stay in there before you start to wrinkle or stare at the reflection on the taps and mentally figure out what is being reflected; try to think about ANYTHING but the things that are worrying you.

If you can’t shut things off; fire off a few tweets, phone a friend or write a blog post to rant and release the tension that way, then make another list.

Take everything a day at a time; you will still worry and stress about things you can’t control – the trick is to only give into it now and again; plan for the worst and hope for the best.

The list is your plan, letting go is what will see you through it.

I love that one of my former tutors is trying to help me in this, the recent Linkedin reference she gave me makes me sound like ‘superwoman’ as opposed to way I see myself which is ‘part-time almost-woman’:

Vicky has an amazing amount of energy and a voracious appetite when it comes to her work and her passion in technological issues. Vicky became a mum whilst studying and adapted to motherhood and her studies as if nothing had happended in her world and kept very focused. Vicky received the Best Student of the year Award for 2008-9 which she thoroughlly deserved. I recommend Vicky to any employer as an outstanding individual who can work alone and motivate herself to complete the task at hand

I was lucky in that the becoming a mother thing happened at just the right time in my studies – While pregnant my ME/CFS disappeared; I felt better than I had in over 5 years: no pain and energy to burn!

All the 1st year exams and assignment deadlines come during the early half of my 3rd trimester and although I had to take the first 6 weeks off in my 2nd year following the birth, the support I got from the college was amazing; they sent me regular emails and uploaded extra information to studynet (the uni VLE) and I even got one home visit from a lecturer to go over a class I’d been unable to attend; it’s easy to stay focussed with that kind of background support!

..and that’s without taking into consideration the fact that my beloved has been at home the whole time to take care of both the child and myself – not many lasses are that blessed in the love of their lives!

I guess it’s possible that to anyone but my closest family and friends maybe I do come across as that superwoman – I AM passionate about my interests; I get my teeth hooked into something and I do stay focussed, sometimes to the detriment of my relationship with the people closest to me because I don’t have the energy to work AND be a mum/ partner/ sister/ friend at the same time.

..But no point whining about that when I’ve already done so on my ME/CFS blog and in my twitter stream (in fact I should probably stop whining on twitter about #cfs but some days you really need to vent about how shite it is)

In the break I’ve had from studies since my deferral exams I’ve managed to complete a series of e-learning videos for an online assessment project the University are conducting, in the process I’ve now got a new piece of software under my belt and they want me to pass on the knowledge of its use to others.

I’ve also been asked if I’d participate in another e-assessment project that’s starting up; this would make my 3rd project for the university and I take it as a positive sign that my services have been required multiple times because of my knowledge and experience.

..Fingers crossed when I graduate a suitable position opens and they’re willing to take me on as a non-student employee (although for CPD there are a couple of post-grad courses on offer that I’ve been eyeing..)

I think an academic environment like that would suit me quite well; they’re sympathetic towards my health issues and allow me to work mostly from home and to my own schedule (as much as possible) which means I can maximise the time I’m ‘up’ efficiently – I can’t think of many other organisations that would allow me that amount of flexibility!

You see those grades? they’re mine they are *grin* ok, ok so what if it took me an entire academic year to do it!
..Considering I’ve had 75 days of it (that’s right, just over 2 months) bedridden by fatigue (and that’s not counting any crashes prior to the diary count starting mid January else it’d probably be at least 3 or 4 months lost because I had to defer the above modules due to an uncounted relapse in November that lasted right through December)

..and god knows how many other days of productivity I’ve lost to the joys of brain fog (I’m never mentally aware enough on those days to think of keeping count!)

To be honest I’d say I did really bloody well.

Lets put it this way – I’m on track for a first class honours in my specialist degree subject so it’s worth the blood sweat and tears of studying with ME/CFS (and a toddler)

As Chris said on my Facebook page: Vicky rocks!

So, what now you ask? Well, on top of actually being a mum again instead of a snappy, stressed out work beast;

• I’m re-designing and updating several websites (mine and other peoples)
• updating and improving my knowledge of wordpress for this very reason (so a fair bit of reading)
• researching and organising ideas for my final year project (which funnily enough involves the need to understand wordpress VERY well)
• creating several ‘how to’ videos for the ESCAPE project at uni using Camtasia.
• making time to re-read my notes and try to keep what I learned to get those A grades fresh in my mind (important to do when you have CFS memory to contend with)

I know, you’d think I’d kick back and relax wouldn’t you – but I really don’t dare to. One thing I learned this year is that I can pace, but I can’t stop; If I stop I lose any headway I’ve made.

So, gotta keep the momentum going (without over doing it) because I REALLY, really want to be able to get a job at the end of all this.

Oh.. and for those of you interested, here’s the video part of the DES assignment that netted me the top mark:

Click here to view the embedded video.

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.