updates and employment

Figured I should do some updating, been slack on the website front for a variety of reasons. Anyhow this is my current 'crash' breakdown (excluding jan/ feb due to loss of data when phone died):

	2010	2011	2012
Amount of crashes in January	8	8	unknown
Amount of crashes in February	9	9	unknown
Amount of crashes in March	13	7	9
Amount of crashes in April	10	5	10
Amount of crashes in May	11	14	6
Amount of crashes in June	15	10	4
Amount of crashes in July	8	9	10
Amount of crashes in August	16	7	tbc
Amount of crashes in September	10	9	tbc
Amount of crashes in October	14	15	tbc
Amount of crashes in November	8	18	tbc
Average crash per month:	11	10	tbc

having more of the days where my limbs feel too heavy but I'm able to move about and my head feels 'distant' (brain foggy) so I can carry on a conversation but the effort needed to concentrate is so tiring that I kind of dip in and out so people think I'm either being ignorant or rude. I hate it. I don't like blowing hot and cold but I can't help it - it's bloody hard work trying to be normal when every sense is being bombarded with stimuli I'm struggling to process; just want to stay in bed on days like that because although I look normal it's sooooo hard to BE normal. *sigh* one day I'll be free of this shit. Until then, carry on as 'normal'.

Despite not hearing anything from the ESA folks about a back to work appointment (something I thought would've happened by now since i'm in the work group) I've continued to apply for jobs left right and centre and I'm supposed to be starting a small job in september - 3.5hrs a week for a semester; teaching foundation degree students on their final year project module. It's not much but it is a foot in the door and I really can handle that amount of work easily so, if I do well.. fingers crossed, i'll get more hours and if i don't at least it's something else on my cv, they've also said I could get a PGCE paid for so... Just waiting on getting the paperwork to fill out to make it official.

Just trying really hard not to think about how much income i'll lose doing this - I have to start somewhere and it's either bite the bullet and TRY or just sit around forever waiting for something safer to come along. Hoping Stef will finally get a job soon too, would be nice to be free of the benefits trap - being able to move somewhere bigger would be a dream come true; I dream of a craft room...

Contributing factors

I've found a cheap vegepa substitute to try out at our local superdrug: I'm thinking that if it works then it's not so much the lack of DHA in Vegepa that made such a difference to me as the Vitamin D I gained from using such high doses.

Something which could be explained by this nifty little infographic:




There was talk in the CFS community a few years ago about the importance of vitamin D with regards to this illness; it's as good a thing to try as any other I guess. ..And at least I'll know once and for all if the ridiculous expense of Vegepa was worth it or not.

I'm having a 'normal' day today; Nearly killed myself doing the Galleria walk yesterday; I get all the way there without a problem and that's a good 30 minute walk, I visit 2 shops, sit and have food and drink for 20 minutes then start walking back; I make it about 10 minutes down the road and the fatigue kicks in - it's like walking through treacle, every step is an effort in will power - by the time I get to the small hill leading onto my street I'm crying inside from the effort but because I have bella asleep in her buggy I can't just lie down or sit on a verge until I have the energy to get home, I have to push through it and get us both home safely.

Then I'm dead for a good couple of hours. BUT I made it home, I did my self imposed exercise AND last night I slept 8 hours straight through without any issues and woke up this morning REFRESHED!

I can't do that walk every day but I do it when I can and it's easier with the buggy to walk faster than I do by myself so I can push through the fatigue wall. It's tough but if I don't keep pushing myself every now and again I'll be useless and even weaker physically than I am now.

calorie counting

Been doing a little thinking (dangerous eh?!) and perhaps the lack of Vegepa isn't contributing as much to my current ME-ish state as much as I thought; I put on a LOT of weight during my last year at uni and the trend continued afterwards.

Stef and I are currently trying to lose the excess and I'm hoping it'll give my body a fighting chance against the slew of consecutive illnesses I've had to contend with since completing my degree. I need to lose a stone and a half minimum to be down to my borderline 'ideal' weight - that may not seem much to some people but when you consider just how sedentary my life is you'll realise that losing ANY weight is going to be tough.

I walked to and from the Galleria yesterday; I was out for 3 hours and when I got back just managed to eat a slice of pie and collapsed into bed for the afternoon until Stef woke me for pancakes at 5:30pm, I was back in bed again by 10:30pm and struggled to get out of bed 15 minutes ago (10:30am) but yesterday I was 329 calories under my 1200 allowance despite it being pancake day so go me!

I'm all signed up with my fitness pal and keeping a careful track of what I eat and do (very much missing the convenience of the bar code scanner on the android app now that my phone is broken - and the crash calendar/ period tracker I was using to record the episodes of CFS, luckily most is backed up and I have recorded the numbers on here so it's not a total loss of 2 years data) calorie counting is a pain though - I'm just lucky Stef is doing most of the cooking because just working out my breakfast of yoghurt, banana and honey this morning taxed my poor brain - I'm so TIRED! ..and I'm struggling to eat this even though I need the food to give me some semblance of energy.

Lets hope the anticipated weight loss has the desired effect and I get back to feeling brighter and more 'with it' and less prone to every bug my darling daughter brings home from nursery; if nothing else I'm aiming to fit in the most gorgeous dress I own that was aired just once pre-pregnancy so I don't have to buy anything for the 3 weddings we have to attend this year - I'm on a budget don'cha know.

One thing I have discovered is that drinking a mug of Clipper 'sleep easy' tea with a teaspoonful of honey to sweeten it before bed does seem to help me drop off; ok so it may just be that the exercise I'm forcing myself to do when I can is the real reason but at least I'm getting SOME decent sleep - for the last few weeks I've been ghostly pale with black circles under my eyes; hopefully this new routine will alleviate the death camp look and bring me back to a healthier complexion and more refreshing sleep.

What's the hold up?

I was told at the start of December that I'm beginning the move to ESA, I filled in and returned the ATOS form and now I'm still waiting to hear back from them. I'm stressing about the family budget, I'm stressing about the fact that I'm just not coming out of this ME/CFS funk; every time I think i'm heading into a period of remission i get a cold/ virus and it's straight back into relapseville.

I can't afford any more VegEPA and haven't been taking them since at least Novemeber (maybe longer; my memory fails me) and it really shows; my mood is slanted towards the pessimistic, my brain is sluggish and I'm back to being too easily distracted to really concentrate on things - and the thing that for me fixes all these issues I can't afford to get until I have a job - but without it I'm probably not likely to get a job - it's a vicious circle!

I put in a bid for some freelance work after having no joy with 'real' jobs but 'surprise' I've had no response back; even if i did, I've since looked into how that will affect our finances and unless Stef finds work I'm better off not wading into the 'self employed' quagmire; My brain just couldn't take in the requirements for it and it seems i'd be punished by the DWP for attempting to work my own way; I may be wrong there but like I said, brain glitching a lot lately.

I was taking between 6-8 Vegepa a day, now I'm taking none; I was able to complete a degree with 1st class honours and lead sessions at conferences; now every item is a 'thing or 'thingy' because the aphasia is kicking in almost constantly and I just can't find words (thank god for online thesaurus eh?!) ..and i'm lying in bed half the night trying to sleep and only dozing and dreaming and waking feeling sluggish and unrefreshed.

My diet has improved, the only stress I have is self imposed over financial possibilities; the only major difference in my oral intake is zero Vegepa - you do the maths.

If ESA folk would just tell me where I stand and what's happening even the stress would vanish as I could then get organised; but obviously my body now relies on that bloody supplement; either I've been taking it too long or it really does help on its own - or it's one hell of a placebo effect. I need to find £11pw for a pot of the stuff to help me get my brain and sleeping patterns back! if only the NHS provided it *sigh* it's a dear do being ill.

Praise

Just had a fabulous boost to my self esteem in the form of an email forwarded to me by the team leader of the inclusive culture project:

Dear Team,

I have met with Vicky Stringer for a longer talk on my bit for inclusivity. Wow - what a 'can do' attitude! She is full of ideas and was often one step ahead. (Not difficult in my case I KNOW!)

Then, last Wednesday she came to the Health and Human Sciences conference, was very supportive of inclusivity there, made contacts all over the place and was a superb ambassador for the whole thing. Has sent me help with taking part in twitter. For a student who is not always very well, she is investing a tremendous amount in all this. It's an absolute priviledge to work with some one so tuned in and full of excellent ideas about how to push things forward. So dear colleagues, I'd like to say that who ever thought of her for the student choice on this project has made an inspired choice. As if you did not already know....

Yup, I still 'got it' *grin* not bad for someone who can't even get out of bed for half the month eh?! I am SO getting me a job. ..Somewhere.

moving past pessimism - sort of..

I've decided to ignore any fears regarding the ESA appointment and focus on the hope that they can help me find a job that works around being ill. I figure if I can get into a routine it will help me get back into pacing, having a provable income means I can start looking for somewhere more suitable for us to live without worrying who I can ask to be my guarantor (letting agents don't seem to like folk on benefits down here - even though that's a more reliable income than wages these days!)

I can also use whatever job they 'force' me into as a way of proving (both to myself and future employers) that I'm a good bet; one day I hope to get something that relates both to my degree and the experience I've built up in e-learning and blended learning theory, techniques and applications (software and web applications that is) and help make a difference in the way knowledge is passed on.

I've accepted that learning to drive is not on my list of future activities: even if I did we couldn't afford insurance for both of us on one car never mind running 2 cars. So bus travel is inevitable unless all my campaigning and volunteering pays off and I can get work at the uni - ideal as it's only a 10 minute walk!

But by god doing the ATOS medical assessment form is depressing!

Reading it back to myself  I'll be surprised if they consider me fit to breathe never mind work!..and that's with just the main crap I deal with written down - not the little things, just the big 3: fatigue, brain fog and pain. The thing is - yes, I know there is an average of 11 days a month where I can't work because I'm neither use nor ornament; but the other 19-20 days I can do a lot if it's computer based work; I figure I can easily do 12 hrs a week (3-4hrs a day so long as the days are spaced a day apart ie mon/wed) assuming I need to travel the national average of 40mins each way, if I can work from home I can up that to 5, maybe even 7 hours a day (depending on the work, though at my present levels 7 hours is definitely pushing it)

You see, I am organised; so long as I know what is expected of me and I can work around my illness to my own schedule I can get things done - in some cases more efficiently than a 'normal' person. Unless of course I am just fooling myself there in an attempt to think positive,,? NO, aaaarrgh! say it isn't so!

*ahem*

So despite the depressing picture being painted in my assessment form I'm hoping at the physical assessment they'll say "cool! go here and we'll find you a job as a virtual worker" even if it's boring monkey brain data entry I don't care so long as the pay is comparable to my current income and it means I can actually better our family situation - after all, when working I'll be useless at home for anything else so why give up quality of life to be worse off..?

..though I'd much rather they helped me find funding to do a masters/ Phd so I could try trolling for work at the UoH as a visiting lecturer in the computer science department for one or 2 modules.. £45ph? Yes please! And I have so many ideas on ways to present the material to make it less hard on me and more engaging for the students.. Ahh.. If wishes were horses *sigh*

So much for that idea..

I did make a start, I have a wordpress installation all set up with the basics ready for a move and a cull - but sadly the day after posting that last I fell ill again, and I haven't been fit for anything since - I've had exactly 3 days (not even in a row which sucks) where I've felt 'normal' as in no brain fog/ cfs or menieres/ sickness or flu to deal with since September 1st. considering we're now 6 days into December I'd say that sucks massive sweaty donkey bollocks wouldn't you..?

So, as is par for the course this is when the 'bad' news hits; it always comes just when I'm at my lowest. While I'm trying so hard to stay positive and think about the possibility of working I'm informed of the need for a medical assessment and transfer to ESA so they can assess my fitness to work.

I will admit to conflicting emotions; fear that i'll lose the financial security of my benefits and be forced into some monkey brain job that sucks all the joy out of living and leaves me useless at home for anything involving quality of life or ability to be a decent mum.
..But the even greater fear is that they'll confirm I am indeed useless and will never be able to work.

I'm worried that as my benefits are the sole income of our household we'll struggle for a couple of months to pay rent and bills or buy food - stupid I know as if I lose incapacity i'll just be put on JSA and so will Stef - in fact we may even be better off that way as we'd both have an income AND we'd get full housing/ council tax benefit - and possibly income support..

But change is scary, any kind of change be it financial, emotional or other; I just wish it wasn't also stressfull. I need to be well so I can try and find a job that I can hold down: I don't want to be told that chances are less than slim. If only someone would offer me work that would allow me to work on my laptop from bed.

This is why I loved studying; I felt in control, I felt useful. OK so I never once hit a deadline and had extenuating circumstances for everything - but I did good work, I learned things and I got a 1st class honours degree from doing so - that is a great achievement.

Sadly the workplace rarely allows you to miss a deadline; extenuating circumstances do not exist in the business world and home working is still a rarity so working from my bed is still not an option. I guess it's time to face the fact that unless the ESA folk know of a job that lets me work as though I was studying I'm stuck being useless forever - or until the working world catches up to the digital revolution at least.

	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	14
Amount of crashes in June	15	10
Amount of crashes in July	8	9
Amount of crashes in August	16	7
Amount of crashes in September	10	9
Amount of crashes in October	14	15
Amount of crashes in November	8	18
Average crash per month:	11	10

As before 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 don't bother with as I can still get some things done(even if it's just doing a load of washing/ sending a few emails or making sure I eat something)

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.