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!

*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*


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)