Sunday, December 11, 2011

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!


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*

Tuesday, December 06, 2011

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 January88
Amount of crashes in February99
Amount of crashes in March137
Amount of crashes in April105
Amount of crashes in May1114
Amount of crashes in June1510
Amount of crashes in July89
Amount of crashes in August167
Amount of crashes in September109
Amount of crashes in October1415
Amount of crashes in November818
Average crash per month:1110
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)

Thursday, September 29, 2011

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 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..

Saturday, September 03, 2011

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..?

Friday, May 27, 2011

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.

Monday, May 23, 2011

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 January88
Amount of crashes in February99
Amount of crashes in March137
Amount of crashes in April105
Amount of crashes in May1110
Average crash per month:10.27.8

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.

Sunday, May 22, 2011

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:

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.

Wednesday, May 04, 2011

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?

Thursday, April 07, 2011

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

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!

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..)

Tuesday, January 11, 2011

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.