Moving on

Blogger has been good to me, really it has, but now it's time to do as I've been intending to do for quite a while and shift over to the revamped CFS site i created on my personal domain, that's right I'm moving to http://rosevibe.me.uk/cfs it may take a few days from now for the new blog to be live while I tweak some things and install others, but the new site should be fully accessible for those of you using screen readers and the like. Fingers crossed it also means i'll be more regular in my updates *grin* for example I can't believe I neglected to mention that I managed a first class honours in my degree subject (Bsc IT web based systems) and that since leaving uni this week is the first time I've felt any inclination to do 'webstuff'. I was totally burned out, suffered a mini-relapse and have some recurring mystery abdominal pain that the GP thought was appendicitis (it wasn't) but as with the CFS I don't see any point going back to the DR's as the specialists in 3 different departments at the hospital ran tests and couldn't figure out the cause so why waste our time. Rightio, back to the exporting and tweaking of the new home; I'll be posting once more on here to share the address of the new blogs feed for those of you so interested, otherwise it's adios blogger! Let's always be friends..

Hospital visit

so yeah, 3 years ago today i was lying in a hospital bed with my newborn. Yesterday i was lying in a hospital bed due to abdominal pains; stef has been joking that I wanted to relive the birth, I didn't see the humour.

The pain started at five am, it was a sharp burning slashing pain that came in waves, I tried to ignore it as I've had it before (though not at such an intense level) I just assumed I'd pulled something inside to do with the scar - like I say I've had it before and it always went away so no point bothering the Dr.

This time though the pain just kept growing to the point that at 8am I was sat on the couch with Bella and I passed out for a few seconds - I have only ever fainted twice before and both times were due to an infection so.. Drs.

I went in, got poked and prodded - he pressed down on the tender spot and I screamed and burst into tears, he then phoned the hospital and asked that I be admitted with possible appendicitis. Great.

We got to WGC and I was admitted, disrobed and left on a bed for several folk to come and do more of the prodding and poking - but by now the pain had practically disappeared as it was just a dull all over abdominal ache that made it impossible for me to recall just where it had hurt the most before.

The surgeon on call decided it was unlikely to be appendicitis and I was sent in for observation. All day I was stuck in a hospital bed with the pain coming and going - always seemingly gone when anyone medical was around to check on me; which figures..

After an ultrasound, an internal, swabs, lots of external poking plus urine tests and blood work I was given  a possible explanation based soley on theory - the gynaecology lass suggested that it could be adhesions and the first examination by the GP may have 'done' something to help push whatever was causing the problem back into place, the surgeon said I may have had a cyst of some kind and again the GP examination burst it hence big stab of pain and then very little else.. To be honest by 8pm I didn't care, I just wanted to go home.

As usual they could find nothing wrong with me, tests came back negative and I figured I could manage it myself with painkillers so when they asked if it had gone I said yes. ..Because it had gone back to the dull ache, ok so 10mins later when we were back in the car it came back but it had been doing so all day so what was the point in my taking up a bed that they obviously needed when they could do sod all for me that I couldn't do for myself at home..?

If I can avoid the medical profession I will, I have ME/CFS that they cannot help me with - so I do the best I can alone, if I were to tell them every time some symptom returns or if I'm finding it hard to cope with something I'd be there every bloody week! The Menieres disease; likewise. I go in for my betahistine prescriptions as they do help keep it under control - mostly.. But if I were to go in every time I had an attack again i'd be in there at least once a fortnight - so just adding a mystery fluctuating abdominal pain to the list of things I sort out myself is nothing.

All hail over the counter pain pills eh..?

Coping with stress the list way

Stress is the bane of everyone's existence - more so for those of us whose bodies will shut down at the slightest intimation of that nasty wee beastie rearing its ugly little head.

I know when the stress is kicking in even before it starts making its presence known by stirring up the ME/CFS or Menieres disease; 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 ist 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 posting/ taking in - 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; 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.

Diet really IS important..

For the last few weeks we've strayed badly from the path of healthy eating; Stef delays shopping until we're ending up getting take-out or eating cereal because there's nothing in/ can't be bothered to cook, my birthday came and we were eating the cake and chips/ dip/ processed stuff for days and I've been indulging in a Starbucks chai latte far more often than I should.

We've been eating hotdogs, toast, pasties and the odd healthy tuna pasta salad but my body has definitely noticed the difference. As I write this it's a struggle to find the words, I'm almost falling off the keyboard tray because I've not got the energy to support myself - and I've been in bed practically all morning.

Every day for the past week I've either had to go crash for a couple of hours or just struggled to get up in the first place - and it doesn't help that Thursday I went out with the girls and I've just not bounced back from it like I should.

I know I'll be 'ok' (as ok as it gets with me/cfs) once we get the food back in line - Stef said he's going shopping today and we'll be eating healthy again from now on.. Guess it doesn't help that I'm stressing about my final year project and what it could mean for my grade as the second exam didn't go as well as i'd have hoped - also looking back on the 1st exam perhaps I was a little optimistic because now I don't feel half as confident.

I've still got to get my conference talk sorted along with the slides, I'm worried about not getting the job i've applied for and worried that I will - I just wish I could shut specific parts of my brain off so that I could function without feeling as dead as I do now.

just forcing myself out of bed to get some weetabix for lunch was enough to wipe me out again earlier - but it's better to use my energy getting fuel than to just sit and attempt to follow some rubbish on tv.

Once this damned project is out of the way I can breathe a little easier, the diet will get sorted, I'll start to physically pull through this slump - I just need to remember this next time we slide into the convenience/ lazy food trap. we've wasted double our food budget on eating rubbish and look where it's got me. Stupid stupid stupid!

..and i've not been taking my VegEPA or my supplements - just shows eh?!

From tomorrow, back to the food diary. I want to see this trend continue until the average crash per month is less than 3:

	2010	2011
Amount of crashes in January	8	8
Amount of crashes in February	9	9
Amount of crashes in March	13	7
Amount of crashes in April	10	5
Amount of crashes in May	11	10
Average crash per month:	10.2	7.8

The only crashes I've recorded on here are the 'full day in bed/ incapacitated, no good to anyone' days - the cognitive and half days I didn't bother with as I can still get some things done then (even if it's just doing a load of washing/ sending a few emails or making sure I eat something)

I honestly think May would have been half that figure if I hadn't been so stupid with regards looking after myself - lets face it the month isn't even over yet and I'm almost at the same number of crashes as last year which kills the positive trend I had going.

I've applied for a job - wish me luck!

There's a couple of part time posts going at the uni for disability advisers and after a little push from my friends in the LTI and BLU departments I've applied for one of them.

Hopefully under the 2ticks scheme I should at least get an interview depending on how HR view my application prior to passing it on to the head of disability services but.. Meh, we'll see.

This is the personal statement I included with my scanty cv offerings (scanty because I've obviously had no job since getting me/cfs and I didn't see the relevance of adding the stuff I did over 10 years ago)

As a soon to be graduating student at the university I am fully aware of the facilities available and how to access them from the student perspective and have personally benefited from the assistance provided by the disability support team. I understand the university systems and am aware of the procedures already in place.

I feel that I could bring something to this post beyond the people facing, administrative and customer service type skills my CV demonstrates. I not only have personal experience of studying with both a young child and multiple hidden physical disabilities, but I have voluntarily participated in two projects associated with blended learning and the use of technology through the Blended Learning Unit: Dominic Bygate, the then team leader of the CABLE (Change Academy in Blended Learning Enhancement) group project said of my work “Vicky has had an enormously positive effect on the project and has made a huge contribution in terms of the technical aspects, the coordination and the direction of the project”. August 27, 2009 (via my linkedin profile: http://linkedin.com/in/rosevibe)

I am also currently the student member of a Higher Education Academy (HEA) funded project ‘Developing an Inclusive Culture in Higher Education’, the aim of which is to develop an inclusive teaching strand to the University's curriculum design toolkit. The core team members, besides myself, are Helen Barefoot and Sarah Flynn of the Learning and Teaching Institute and Marcella Wright; Head of Equality. Together we are trying to assess the needs of all staff and students across the institute and develop mechanisms through which to best support them. During the recent HEA residential I ran an open space session for the other student delegates, all of whom have a disability. We discussed the levels of support within their institutions and determined specific challenges from the student perspective and considered how best to address them.

Use of technology is integral to all aspects of work and study and I am passionate about ensuring technology is used to best effect to aid learning. I would relish the opportunity to promote the more integrated use of technology within the curriculum, ensuring that all students are given the maximum opportunities to succeed.

I have provided support and guidance for fellow students with disabilities and have been able to provide guidance on accessing the Disabled Student Allowance as well as information regarding Disability Services and the appropriate contacts for students in need. I also provide online support and mentoring for sufferers of chronic fatigue syndrome and I have published coping strategies based on research and my personal experiences.

I am an active member of several online support networks for parents and people with disabilities and would like to continue in that vein by offering help and support for students to create their own coping strategies where appropriate; whether it be leveraging online social media and choosing technologies to complement their learning style and physical needs or simply choosing a work flow to make the most of their strengths and creating a study needs agreement to reflect that.

Most of all, I want to be in a position to help people achieve beyond their expectations and make use of my own skills and knowledge in doing so; being able to support other students who for whatever reason may struggle with university life would be the logical extension of my time at the University of Hertfordshire; they would benefit from my personal experience and knowledge of possible tools and techniques to aid their studies as well as the core function of first contact for their basic study needs and well being.

Fingers crossed that's enough; I've been boning up on uni policy and the disability/ equality act in preparation for a possible interview.. I mean how ACE would it be to not only get my degree but to get OFF benefits before my graduation ceremony actually occurs?

Yes, I've worked out the finances and taking this job potentially leaves me £100pm worse off than I am on incapacity but tbh I don't really care - maybe I can make that up with some freelance web design or finally making jewellery to sell - the most important thing is getting out of the benefit trap and on the path to finally owning my own home, after all - wages increase more than benefits and once Bella is full time at nursery Stef can work and a combined income will remove any deficit on my part.
..I hope.

Been a long year..

..But the end is in sight!

I had my first exam yesterday and despite being worried as the day before was spent entirely stuck in bed with my worst CFS crash in a while - I think I aced it.

That is the first time I've ever come out of an exam suprememly confident in my responses - it's also the first time I've looked over an exam paper and had the pick of the optional questions because I knew the answers to 'em all!

Hopefully that's not over confidence speaking but so long as I can do as well on fridays exam then I'm guaranteed my 1st class honours no matter what grade my project gets.

The deadline for that is the 23rd of May so not long to go until my life as a student is over. Hard to believe freedom is so close!

To be honest I'm trying hard not to think about life after exams because I'm worried to death about getting a job; I know I can only do part time, it's just; who will take me on and doing what?

But that's borrowing trouble and it's normal for any graduate to feel that way so for now trying to shelve any pessimism and just concentrate on the work that will actually determine the level of job I can apply for.

..oh and if any of you infrequent readers are interested - I could use a little help with my project:

this 5-10 minute survey could really use some love, it is task based and requires that you locate and download a certain .pdf file, but I'd appreciate it EVER so much if you'd oblige a gal.. *flutters lashes* pretty please?

CFS Diet suggestions

These are all things that I've found work for me - they may not work for everyone but hey, it's worth a shunt eh?!

I found the most difference in my symptoms when I:
a. Stopped taking the contraceptive pill (I know, not relevant to you if you're missing a uterus)
b. Cut out of my life stressful energy thieves (family and 'friends' alike)
c. Changed my diet and lifestyle

Hydration:
I have the occasional yorkshire or chai tea (hard to cut out caffeine completely) but for hot drinks it's mostly Ovaltine (great way of upping my b-vitamin intake) or rooibos (redbush) I have no carbonated drinks at all; cold drinks are apple juice or cranberry juice mixed with filtered water.

If I have to have a bottled drink with added sugar then I've found the vitamin water drinks to be very tasty; they are a bit pricier than others on the market but each bottle holds about a pint of fluid with the advantage of added vitamins (though jury is out on how effective those vitamins actually are) since we dehydrate so quickly it's handy having something that's easy to drink, water by itself can be hard to drink in large quantities sometimes; you need flavour!

Food
Stef still does most of the cooking but (now that I have longer periods of being able to do for myself) at least once a month I batch cook things like soup, mashed potato and shepards pie for the freezer so it's just a matter of taking a portion out and sticking it in the cooker until the timer dings)

If I'm having an off day but can actually manage 10mins in the kitchen I also eat a lot of things like scrambled eggs, baked beans or banana on toast (minimal cooking required for maximum protein)or tuna mayo with pasta or baked potato with spinach and mushroom when I'm feeling a little more energetic, otherwise it's a fortified cereal either with milk or just in a bowl as a dry snack.

For something hot that seems more substantial but takes even less effort than the above, if you can't do the prep work yourself then either buy pre-prepared veg or ask a friend/ family member to peel and chop enough for you to seal into portion bags for the fridge with a garlic clove, sprinkling of mixed herbs and a liberal amount of olive oil (enough to coat but not enough to have 'em swimming in it) then you just make it to the kitchen, empty the bag into a roasting dish, go rest up while it cooks for 30mins and then empty onto a plate and enjoy.

..It may also be handy having a few portion bags of pre-cut carrot and some hummus for more healthy snacks.

I've also recently discovered MunchySeeds for on the go snacks - I can testify the orange tub is ridiculously addictive for seeds! and a small handful whenever you feel the first intimation of fatigue/ headache/ basic wrongness seems to help stave it off for longer.

Basically eat more high protiene foods; nut bars and the aforementioned munchyseeds are great snacks to keep you going, and drink ovaltine - as mentioned above it's got a good dose of much needed B vitamins which helps far more than sugar

(..a couple of my healthy friends have started drinking it instead of coffee when they need to keep working and alert and they find it helps too..)

I've found the trick is to graze; eat little and often through the day and I can go longer; keep hydrated with filterd water or apple juice and every hour or so have a handful of seeds, raisins, fruit or a nut bar (these are my favourites: eat natural bars
..Even if you're not that hungry your body needs fuel, folks with CFS even more so than normals in my opinion!

If you're having a cycle of being stuck in bed, keep a cooler bag (or mini fridge if you can bear the noise) by the bed with chopped fruit/ veg and a drink or 2, ask a friend or family member to replenish this for you when they visit and so long as you graze when you remember to it should help you build up that little bit quicker; at the very least will stop your weakness getting worse from enforced starvation and stop you feeling like such a burden for continually having to ask for food or drink (alongside the added resentment you're likely to feel for having to ask in the first place..)

Gearing up

The end is in sight - finally!

I've been getting things ready and working on the preliminary parts of my project, it doesn't officially start until the 21st but I figure going off last year; the further ahead I can get myself the better, because come April all hell will break loose as exam stress and deadlines force the usual breakdown and relapse.

On the plus side I'm organised and know what is expected of me, I have most of the course materials from last year so will be able to keep abreast of things even in the event of a relapse - and now I've managed to get wamp set up on my laptop I no longer need an internet connection to code and test my stuff so I can literally work anywhere now.

Even being up at 6am with the child before a quick nip into M&S for some late christmas gifts hasn't phased me this morning. I've done an hours coding and am about to take my 2hr break to sit and watch a film over lunch, then of course it's back to it but with pacing set at 10 minutes of work then 20 minutes of rest - should make for a productive day!

..I hope.

Old ghosts and how to deal with them

A few years ago I made the decision to have nothing more to do with my mother; She'd betrayed my trust for the last time and hurt me in the worst way imaginable, then instead of an apology I got a lecture about forgiveness and how I should consider her feelings..

At that point I decided there was no way I was wasting any more of my valuable time and effort on her. For 30 years I'd made excuses and rationalised away her abominable behaviour but that incident broke any hope of a change; I realised if I ever had kids I'd not trust their feelings in her hands and that I certainly did not trust her to keep quiet about things I'd rather they didn't know; it was that realisation that gave me the courage to cut off all ties.

Now I have a child of my own I am thankful whenever she crosses my mind that I made that choice - which is unfortunately almost daily as it's hard not to make comparisons now I'm a mum; at least one thing I know to be true is that she definitely taught me how NOT to behave around my child - I just pray any poison I unknowingly inject into my daughters psyche is of a far less malignant kind.

When I made that decision to cut away the stress she engendered in my life, suddenly I lost at least half of my ME/CFS symptoms and funnily enough it's usually incidents from my past butting into my day to day life that bring about an unexpected flare up and crash - I can handle work stress to a point and can manage my exercise and work load the same way; emotional stress is another thing entirely - it wipes me out completely and I have no defence against it.

..So you can probably imagine my 'joy' upon receiving a letter from the woman who bore me asking for a picture of my family and a hope for reconciliation.

I've had an agonising few hours of self doubt and second guessing, where I wondered if now was the right time, if she'd changed.. Swiftly followed by a mental slide show of all the times I've had this same mental run down in the past and gave in with rationalisations and excuses for her only to be put through the wringer again and again.

I have more to lose now; I have a tenuous control of my health, a daughter to raise and a future planned out so there can be only one response:

NO.

Never. Not on the life of anyone I hold dear - and that definitely excludes her.

It may seem harsh to anyone without the necessary background information but I'll put it to you this way; if a 'friend' lied to you, told anyone who would listen your secrets and then repeatedly caused you emotional and financial difficulties - would you continue to keep them as a friend?

I pity the fools who do.

So what if she gave birth to me - for years I lacked self confidence and direction because of issues she caused; I don't need to see a psychiatrist to know those issues are still there and that the last thing I need is to bring them back to the surface and wreck the life we've built here.

So the letter will be destroyed unanswered, the request unmet and I'll do my best to ignore her existence again and hope that the blip in my equilibrium will not last longer than today.

..Now if I could only convince well meaning family members to butt out perhaps the threat of similar missives would be removed (..someone had to have passed on my address to her; she's not web savvy enough to check the whois)

FECKING ARSEHOLES! ..or why the slc suck great big hairy donkey bollocks.

I kid you not - trying to get this sorted is almost as bad as applying for DLA!

Last year they finally paid me in a lump sum AFTER the academic year ended. This time I thought it was all sorted but NO.. That would be too easy wouldn't it?

After paying my first expected instalment, they've now sent me ANOTHER 'final' notification stating that i'm to be paid less (not getting the parents allowance or adult dependants grant now for some reason - maybe I lost my partner and daughter in some freak accident and nobody told me yet?)

..on top of which they are also now paying £3220 in tuition fees - despite the fact that this years fees were already paid last year because study was deferred on health grounds so the fees have rolled over.

I'm SO looking forward to calling them on Monday (not!) to speak to 3 different people who will each tell me that this or that information isn't showing on the system now - despite it obviously being there before seeing as i've already had a payment from them!

I'm fed up. My housing benefit and council tax benefit all get based on the expected amount from the SLC, every change has a knock on effect and i'm sick of always having to juggle the house finances to compensate - my other half has no income because he's at home looking after me and bella - because I get student loan he can't get income support and because he's not looking for work he can't get jobseekers - my income is IT for the 3 of us.

Considering going up to darlington and burning the place down. ..except that'd set the process back for everyone by about 2 years again.

Fecking idiots - why do all paperwork places hire idiots? They lose items sent by registered post, ask for information they have previously told you they don't need and delay asking for something important until you've already sent in 5 copies of the stuff they don't need but have asked for AGAIN.

I HATE THE STUDENT LOANS PEOPLE WITH A PASSION.

..and breathe.

Temper temper..

Ok, so she's 2. it's not like there isn't any warning that this will happen - they're called the terrible two's for a reason it seems. She's just infuriating me all the time - it's a constant battle of wills 'dat mine!' 'NO!' 'go'way mummy' 'want it' 'me do dat'

..and the tantrums! Any response contrary to her desire is met with screaming, kicking, pinching, biting.. The other day she got to me so badly that stef had to take her out of my sight so I didn't pick her up and throw her across the room in a rage.

It's hard enough to cope with her being like that when I feel well but the me/cfs has kicked in with a vengeance and so lately i'm either fatigued, in pain or completely brain dead (or all three) and it's really hard to keep a lid on my temper when I'm tired or in pain.

I KNOW she's just testing her limits and in the process pushing me to mine but i really feel sometimes I can't cope with it - and this is a child that 'everyone else' says is 'just a normal kid'

I KNOW that. ..But 'everyone else' doesn't have to deal with the kicking and biting and pinching on a body that is so worn down through illness that even the slightest knock feels like it's been administered by a baseball bat wielded by a giant.

I've managed to mostly stop the biting by dint of biting her back when she does it, pinching back doesn't seem to have the same effect sadly because then she thinks it's a game and pinches back even harder

..and hitting is out of the question (though she does get a slap on the fleshy part of her leg if she pushes me too far when I'm fighting with her to change her nappy and there's shit going everywhere - roll on being potty trained!)

Stef took her out of the room because I had to turn my back, clench my fists and literally hold on in silence until the red mist left me - if I'd had to speak or do anything it would have been something i'd regret.

it's possible that part of the reason i'm so bad at the moment is just down to being a parent - stress and bottled up emotion play havoc with your system and i'm so angry so much of the time at the moment - at bella, at stef, at myself.. it's hardly surprising i'm sliding back into a pre-relapse state.

Just need to get through this next 2 years - that's what I keep telling myself; get my degree and have a year out to recover.

If I can.

Arsing cuntybollocks!

I've really enjoyed the last month or so. It's been great having no work deadline and being able to not think about coursework or 'THE FUTURE' for days at a time; Instead I've been a mum. I've spent quality time with my daughter and Stef and just crashed around family time instead of crashing through it before locking myself away to work.

It's made me realise that I don't really want to get the job I know I need to get. Not because I don't want to work; I do - I love being around people who treat me as knowledgeable and competent as opposed to ill and weak and pitiful and I love feeling as though I'm doing something constructive with my time.

The problem is - I have enough energy to be a part-time mum OR a part-time employee; as soon as I'm working I'll be back to being too tired to do more than lie on the couch and watch my daughter play; I won't be able to go out to the play centres and home visits with her and Stef like we have been because I'll need to conserve that energy for work.

I don't want to live to work; People are supposed to work to live - that's the whole point!

I'm already half dreading the return to structured classes in January because I'm afraid I'll lose this rapport we've been building. My daughter always pushed me away and cried for Stef before; I love that now she cries for me too when she's hurt or in need of assistance; I don't want to go back to being useless or unavailable mum - but there is no way of avoiding it if I don't want to waste all my hard work up to now.

Why can't there be a compromise with the CFS? why do I have to choose one thing over another? I would give ANYTHING to be normal again; to be able to come home after a 4 hour work day and still have the energy to play with Isabella.

But it's not going to happen. Stef keeps telling me not to get down about it - to remember that it's only another 6 months. But what happens then? I get a job and give up any hope of being a real mum?

We might get the home we need but at what cost? Why am I doing this course? when I started it was to get out of the benefit trap, but that was before Bella came along and I didn't have any other claim on my time. Now she's there and if I work I don't have the time or energy she needs from me.

Stef is right, I have 6 months to work on it at least, worrying is a further waste of energy that I don't have to spare but it's REALLY hard not to fret.

I'm so lucky.

I've been reading back through the early postings on this blog and I have to say that I'm probably one of the luckiest people alive.

I no longer have the majority of the symptoms I suffered through back then; now all I have to deal with is fatigue, brain fog and pain (and the occasional bout of menieres disease) some people may say there is nothing lucky about that but when compared to those early days I thank my lucky stars that, awful as they are, these things are all I have to worry about now.

I have coping mechanisms in place and yes, I lose around 30-50% of my waking life to these symptoms but that's a damned sight better than the 80-90% of waking life I was losing before.

I have learned through this illness to prioritise and structure my life to get the most out of it - I know many people that seem to gain nothing from all their hours of perfect health so this makes me a winner in my eyes.

I manage to spend quality time with my daughter and partner, I am slowly finishing my degree (and yes I'm on track for a 1st class honours) and the job prospects following that are incredibly hopeful - even despite my health issues.

So yes, I am very lucky. Things could be a lot worse, things HAVE been a lot worse; the fact that they are always improving (albeit slowly) is something to be very thankful for.

My main goal when I became ill was to get well enough to find work and come off benefits - this is a goal I may finally realise once I have completed my degree. It's a very satisfying thought to know you can actually achieve your goals.

My next goal is to earn enough to buy the house I've been dreaming of forever - the house I'd saved enough deposit for when I got ill and had to watch that money dwindle to nothing as my income vanished.

I'm lucky because I didn't buy that house before I became ill, if I had I'd have been homeless and most likely dead by now as I wouldn't have met the man who changed my life and gave me my daughter and the strength to keep going.

Everything happens for a reason - never forget that.

The future's so bright.. I gotta wear shades!

Principles and applications of web Services (technology): A3
Digital Entertainment Systems: A1
Web Application development (design): A3
Professional Issues in computing: A3


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 74 days (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 otherwise it would probably be at least three months considering I lost most of November and December which necessitated the deferrals in the first place) and god knows how many other days I lost to the joys of brain fog (I'm never mentally aware enough on those days to think of keeping count!)

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 working on several websites (mine and other peoples)
• updating and improving my knowledge of wordpress for this very reason (so a fair bit of reading)
• I'm researching and organising ideas for my final year project (which funnily enough involves the need to understand wordpress VERY well)
• I'm creating several 'how to' videos for the ESCAPE project at uni.
• 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 because I REALLY, really want to be able to get a job at the end of all this.

Musing

Ok, deferral form and supporting evidence has been submitted - I am officially taking the entire of this semester again next year (assuming the panel ok it)

I'll be honest, having to split my final year like this makes me feel like a failure. Lofically I know i'm not but emotionally.. I just really hate being this mentally weak, having to acknowledge that I can't cope.

..But the worst part of it is that this is a further indication that any hope I harbour of being able to work a full time job is just a pipe dream. If I can't cope with almost part time hours on a flexible course then a full time job will kill me.

..possibly literally if the reported occurrences of a weakened heart in ME/CFS sufferers is true. I'm not giving up my hope completely though - I was able to just about manage a full time course AND the cable project before bella was born.

If I can slowly build myself back up then one day I'll be able to work full time. I have to believe it otherwise what's the point of pushing myself like this?

Why put off until tomorrow..

Once again I am putting in for deferral. There is no way I'll pass the semester B wad and paws exams, I've missed too much class because of the fatigue/ pain and general crapness of menieres and me/cfs.

The truth is, i'll alsobe lucky to pass my DES deferral assignment, I've not even started the last of the filming, I need to get my arse in gear big style - the problem is, i've got myself so stressed about it that I shy away from thinking about all I need to do because it brings on a crash.

Pathetic eh?

I'm averaging 3 crashes a week - that is ones bad enough to keep me in bed for at least half the day and mentally unfit for anything for the rest of it.

When I'm not stuck in bed it seems i'm having to look after bella or clean house and that's given me even less energy/ enthusiasm/ inclination to work.

It doesn't help that she's down with a chest infection and Stef has some kind of flu bug. *sigh* and I don't know what's wrong with me but I need help; I'm being plagued by bad dreams and unpleasant memories.

My mind just keeps regurgitating all the bad stuff that's happened to me since as far back as I can remember, then when it's done reminding me of things I'd give anything to forget, I get slammed with the nasty dreams about things I pray never to see or go through.

To be honest, i'm glad we got the eye massager - 30 minutes on that before bed seems to be the only thing that can send me off these days, I just wish I could stay asleep instead of succumbing to these dreams..

DSA - every CFS/ME student NEEDS this!

I just wish I'd applied for it at the very beginning instead of thinking it would be as torturous and stressful a process as DLA. It isn't, not by a long shot!

It was actually a rather swift and painless process thanks to my needs assessor, he was lovely!

I've had my provisional needs assessment sent off to be approved by the LEA so fingers crossed that will happen before my course ends (since I'm still waiting for them to stop asking for information to assess my maintenance grant this could be a while)

..Assuming all goes well and it gets the big green tick though i'll be the happy possessor of an ergonomic chair and footstool and some software called mindview that I'm convinced will make my revision process a lot more constructive than it usually is!

With 5 exams to revise for this is of the highest priority! I'm actually seriously considering downloading the free trial to try and make a start on all of that now - I've only got just over a month before the exams themselves so time is of the essence!

Why people with ME/CFS should never become famous

I've had an interesting few weeks. Someone up there either REALLY loves me or is just 'avin a laugh at my expense.

I won an award to help pay off some of my ridiculously large student loan and the person handing over the ceremonial cheque was non other that the princess of pop herself; Kylie Minogue.

The whole thing started when I got an email through from a site I'd signed up to telling me that I needed to contact Kev on this mobile number asap as he had some good news for me. I had a sneaking suspicion I'd won something as i'd been getting emails through saying the competition deadline was approaching.

The thing is - it all seemed unreal, I'd thought the whole thing was a bit of an advertising scam 'sign up to this site and be entered into a draw for x prize' I've seen loads of 'em and never known a single person who has actually won anything so when I was told i was a £2k winner i was incredibly paranoid sceptical.

We thought perhaps it was a practical joke or a scam, we could find no mention anywhere other than on their site that Kylie was in fact affiliated with them in any way, there was little information to be found online about the charity that wasn't self-generated so 'just in case' we organised a house sitter while we journeyed down to the offices for the event.

We needn't have bothered - as you can see from the picture it was all on the up and up, the people were lovely, the village was idyllic and the 2 days were a bit of a blur.

The only problem was the me/cfs rearing its ugly little head to mar my enjoyment of the whole thing.

As any of you who've been reading here for a while know; I no longer function well in crowds - small groups of 3-5 are my absolute limit after that it gets to be a little too much for me to handle and I retreat into myself or go and find somewhere to hide and regroup.

This meant i missed out on loads over the 2 days. During the 1st evening everyone went to the pub, firstly there wasn't much seating so after a tiring day of chatting and travelling I was having to stand around and talk to strangers - an ordeal in itself.

Then I didn't get much sleep because in the night, on top of the headache I'd been fighting off all afternoon, I developed a really sore throat and couldn't breathe. we were then up early the next morning to check out of the B&B and head back to the offices for more run-throughs of the event to come.

We got to the office and it was bedlam, I elected to help out in the office rather than with the others in the reception room; 1. because I got a chair and some net time and 2. because I just wasn't feeling up to dealing with more than one person at a time.

Eventually everything started to calm down but then more competition winners started to arrive, these guys hadn't won any cash prizes but they were dying to meet Kylie, I just stuck my head down and made a bracelet with my ever present bead kit - twisting wire helps me calm down and gives me something obvious that forestalls a lot of conversation when I'm feeling mentally fatigued.

..I know I probably came across as rude or anti-social but I just really had trouble coping with all those people - a bloody joke when you consider the 6 years I spent as a bouncer but there you go, one of the delightful side effects of CFS, for me at least.

That was the last chance I had to sit down until Kylie left.

The lady of the moment arrived and the photographers went nuts jostling for position and us students crammed into the space behind them like sardines.. Not ideal for someone who doesn't like crowds, but thankfully I was the 2nd person called onto the stage so it wasn't for long.

However being on that stage felt like an eternity - as the bulbs were flashing and the guys were shouting 'top left, top left, can you look right please, now down, down, over here please Kylie' I said out of the corner of my mouth "I have no idea how you put up with this"

I really felt intimidated and under siege, it was a struggle to keep the smile on my face and look suitably thankful/ grateful to be there, how celebrity and public figures stand such an invasion so much is beyond me - the few minutes I was part of that focus was enough to deter me for life.

The picture shows Kylies response to my comment, she just looked down (yes down. In heels she's taller than me, just to add insult to injury she's also slimmer and more gorgeous *sigh*) and gave me a hug and told me not to worry it'll be over soon. She then looked back up and gave her professional smile for a couple more minutes then said 'that's enough guys' and led me to the podium to give my speech.

Yes, it was torture. I suck at public speaking - my strength lies in the written word, I'm let down greatly when it comes to speaking those words aloud. ..but I stumbled through it then fled the stage in relief.

I had to get back up there for group photos but once Kylie left I grabbed some food and tried to hide in a corner again - but reporters kept grabbing me for interviews; why, I don't know because not one of them used anything I said. But it went nice and quiet as the band started setting up and every photographer scrambled to get set up with laptops and net access in order to upload their shots.

I went and stood against one of the pillars in the corridor, thankful for the cool breeze and the lack of people trying to talk to me, I felt completely wrung out. It was just at that moment that the stinky curly haired ogre shambled past and told me 'you were rubbish by the way' as he walked through the door.

I was pretty much gob smacked to be honest, that came literally out of nowhere; I'd not spoken to the guy and beyond a little joking earlier with some of the other folks about journalists in general had said nothing that could possibly have upset him.

I told Stef about it and then put it out of my mind, all I wanted to do was lie down somewhere - I was really at the end of my limits, finally Kylie left the building and I could head into the reception room and sit down.

..Which is when I burst into tears. Stef then told Sara and Kev about the rude oik and they obviously assumed he was the cause of my upset and started getting all irate about it, which made me even more embarrassed and agitated so they left me to calm down.

After a while they asked if the associated press lass could just ask me a few questions, I answered them (apparently in too much depth according to Stef, but then I always do - I'm not a natural soundbite lass) and finally the day seemed over.

I would have loved to have stayed and enjoyed the after party, but the need to pick up Isabella from his mums combined with my oncoming crash meant that would never have been possible.

I met some lovely people and the studyvox foundation deserve kudos and all the help they can get to realise their dream; sadly I don't have the energy to help much, I have battles of my own to fight and their passion is incredibly tiring because it ignites a passion of your own when you are around them - I can't afford that kind of passion these days, it wipes me out for the best part of a week with the after effects felt for several days more.

I can only really concentrate on one thing at a time outside of my family and currently that one thing is my course.

Which is a shame because they are exactly the kind of people I would love to work for; intelligent, caring, passionate and fun loving folks.

Maybe one day i'll have the energy to share in something so full of possibility but for now it's just head down and slog my way through the year and pray I get enough credits to make the extra year worth it.

Facing reality

This is a kind of good news/ bad news post.

I've been keeping an exercise/ food chart for the last 2 months in an attempt to track my 'recovery' from the latest ME/CFS relapse. Basically it's not good. I have spent almost 50% of the time in bed since starting the diary.

I've sat down today and had a real hard look at what I need to do with my course as opposed to what I want to do.

I WANT to get my head down and plough away at this work and graduate with the rest of my year - preferably with a decent grade but, if I keep on like I am this has zero chance of happening.

I'd thought that by carefully timetable maintenance and pacing I could do the catch-up I needed on last semester while maintaining the work load for this semester but just a glance at the red crash dots on my chart shows me how sadly mistaken I was.

Looking at the crash chart, I've worked out that I can manage AT BEST 4 hours of solid work a day - so long as I also get in at least 2hrs of rest immediately afterwards, otherwise I'm comatose for the next 2 days, some days I can manage only a solid hour, especially if I have to look after Isabella/ clean/ cook/ travel etc.

..and this is just an estimate, it may be that I can't even manage that without triggering a crash.

When Sylvia (the support lass) first brought up the suggestion of deferring my project I immediately said NO! but that's now under the heading of want not need. It sucks. REALLY sucks.

I don't know if taking an extra year will be financially possible, I know I can't get funding from the SLC for another year (this is my 4th year of student loan) so that could cause problems, but.. i guess I'll have to cross that bridge if or when it happens.

Just by deferring the project as she initially suggested will remove not only a large amount of course stress but will allow me to schedule in proper rest breaks and allow me to recover from the daily exertion of thinking/ walking/ dealing with baby/ housework and numerous other things that people without my conditions can do without needing to think about how and when they can afford to do it:



This was the schedule I was trying and failing to keep, as you can see there's not a rest break in sight:


So, just by losing that one module, I get adequate rest, I can devote the full weekend to my family instead of using those days to do homework/catch up on work I've been too ill to do in the week and will be able to gain the grades I need for a decent degree instead of struggling just to scrape a pass.

The other plus side to deferring my project is that it is based upon elements i'm studying in the other modules this semester - deferring until they are complete will leave me in a position to create an even better web application than the basic one i'm currently looking at - hopefully.

so.. disregarding the finances, it's win-win and the decision is made. here's hoping the exam board see it the same way.

Optimistic misery

Sounds daft but it's true. I've been feeling pretty down for ages yet at the same time I'm feeling quite optimistic about the future because things keep happening that are good.

Let me explain.

The ME/CFS made a reappearance quite a few times between October and December of last year, then the Menieres made my life hell over the 3 week christmas break because I ran out of the betahistine tablets.

I couldn't get any more because of first the snow and then because I was too incapacitated to write and take in the letter to the receptionist for my prescription (couldn't find the printed repeat and my surgery asks for a signed note asking for a repeat in those circumstances)

After the Menieres kicked in, it triggered a full on ME/CFS relapse then just as I started to get over that my daughter had the flu jab and gave me a stinking head cold that once again set off the Menieres and the ME/CFS

So for the best part of 3 months I've been stuck in bed unable to do my work, stressing about my inability to do work and getting ill - vicious circle.

I missed 2 exams, web application design (WAD) and Professional issues in computing (PIC) and despite being told I could have an extension on my digital entertainment systems (DES) assignment I've been unable to do ANY work on that as I had to concentrate on my Principles and Applications of web services (PAWS) exam and the portfolio for WAD.

SO, I managed to attend my PAWS exam, I think I did enough to pass despite leaving a few of the questions unfinished (started feeling a bit pants so left the 3hr exam after 1.5 hours) and I've got about 50% of the portfolio done and an extra week from now to finish the rest - which ME/CFS allowing is doable.

My support worker and the individual tutors have been great, assuming I can get the relevant documentation for my Dr (and I can't think what reason he could have not to give it) I can defer the 2 exams and the DES coursework until summer so that I can get the new semester over and done with without the extra worry of legacy work.

On top of which, I've been approached to do a conference workshop in the summer with the 2 project leaders from the CABLE group I was involved with last year - so despite my crap health, I obviously have useful knowledge and experience which leads me to be hopeful that I will be able to find a job at the end of this!

Lets hope so eh?! I'd hate to think I was killing myself for no reason!