Wednesday, December 31, 2008

2008 - A Roundup

I did this last year so I might as well do it this year too. Even though this time I haven't had any major life changes like moving house or getting a new job, it's worth bearing in mind that Steve and I started 2008 with a spirited attempt to blow ourselves up so the entirety of the last 12 months has been something of a bonus. It's also slightly disturbing that my first complete 12 months of post-getting-ill paid employment has been so centred around the benefits system.

In contrast to last year, my birthday was a bit of a non-event, consisting of me buying myself some cake to take into work, and Steve getting a card for me while I was out. Over the next few days things improved. Full of positivity about life, I started an attempt at some self-administered Graded Exercise Therapy which lasted all of about two days before Steve begged me to stop it and I felt cruddy enough to acquiesce. The extra pain, faints, weakness and cognitive difficulties from those days lasted almost two weeks.

February saw the Department of Work and Pensions Secretary Peter Hain leaving his position after a row over his failure to disclose donations for his failed attempt to become deputy leader of the Labour Party. His defence consisted basically of trying to prove that he was incompetent rather than a fraudster, a defence the DWP refuses to hear from its "customers" but apparently finds acceptable from its management. His replacement, James Purnell, started gleefully outlining "reforms" to the welfare system, based largely on a report from a City banker who had spent three whole weeks studying the system before spouting a lot of inaccurate data largely based on his own personal opinions. I got very upset about this as I was struggling with work and an overwhelming awareness that if I didn't cope, I would have to throw myself on the mercy of the "reformed" system.

I was also struggling with a Tax Credits cockup from several years ago, which makes it even more baffling why I decided to re-apply for Disability Living Allowance.

I got my forms finished, mostly by typing it up rather than trying to fit the ins and outs and variations of my day-to-day difficulties into the boxes.

"The total was 48, yes, forty-eight pages. The word-count was 26,019. That's twenty-six thousand and nineteen words. That's more than the entirety of my GCSE English Language and Literature courseworks."

My new GP confirmed that she would be supporting my DLA claim, and several people kindly wrote supporting statements about their direct experience of how my condition affects me. Just as I got the DLA bundle completed and sent off, the Tax Credits people started up again...

While the ball rolled on the Tax Credits and DLA issues, I wrote the most popular blogpost I have ever written... The Gorilla Theory. It gets linked to all over the place and people keep telling me how much it has helped them. I'm very proud of it.

Five months after I had alerted them to the issue, the DWP sent me an amusing letter about how they had paid me too much money when I started work (they forgot to stop putting my Incapacity Benefit into my bank account despite me asking nicely) and now they wanted it back. It was amusing because even though the error was entirely theirs, the letter implied that it was my fault and I'd actively claimed the money on purpose and threatened me with the full weight of THE LAW if I did not arrange to repay the money immediately.

As is becoming usual, May started with Blogging Against Disablism Day. The hot disability topic was still the welfare reforms but I opted to write some musings about equality and difference:

"Equal does not mean identical for the same reason that different does not mean inferior, or, for that matter, superior."

I started to think about my career direction (or lack thereof) and Steve scared the hell out of me by taking half a dose of paracetamol.

My DLA claim was turned down, but unlike 2007, this time I was ready to fight it to appeal.

I finally bit the bullet and admitted that 20 hours over 5 days packing CDs is too much for me, and asked for help from everyone I could think of. The agencies who are supposed to help were the least helpful of all. My boss and I agreed that I would work 17.5 hours over 4 days and have Wednesdays off as a sort of mini-weekend to recover from Monday and Tuesday, and prepare for Thursday and Friday. This has worked incredibly well for me and I haven't needed a sick-day since.

The Tax Credits Appeals and Complaints department reviewed my appeal bundle and agreed that I don't owe them any money. I could claim Tax Credits as a working disabled person and be something like £3k a year better off, but I don't dare.

Remploy offered me £50 to falsify information, and to make it even worse they wouldn't even tell me what that information was - just sent me signature pages of forms.

Steve finished his exams and started work again and our financial position eased up almost instantly. He could have claimed benefit when our savings ran out, but having spent a couple of years watching in horrified amazement the merry dances that people like Pip, Bendy Girl and I have to perform not just before and during our genuine and necessary claims, but for months and years afterwards, he decided not unreasonably that he'd have to be starving first.

I didn't blog at all in August. There was a lot going on and I didn't have the brain-time to write any of it up. Steve and I went out and about a little bit more with our new-found income, but we also had to adjust to the new balancing act of my care needs and the effects of my job vs him being at work all day and no longer having all the time in the world for looking after me and keeping the household running. Social Services assessed me for help and I was approved for Direct Payments for care, as well as an emergency backup care plan.

I applied and was interviewed for a part-time admin job - didn't get it, but there was lots of positive feedback and it was a good confidence boost. We also went to Jiva and Munkt0n's wedding which was quite possibly the loveliest wedding I have ever attended.

With my DLA appeal drawing closer I found myself unable to concentrate properly on anything. Christmas orders started coming in at work and keeping on top of things, while do-able, was taking everything I had.

I won my DLA Appeal. It was backdated to the application date in February which meant I was suddenly owed a lump sum in excess of £2,000. I am proud of having introduced the Appeals panel to Spoon Theory.

After some prodding, I also got an official response about the Remploy problems from back in June. It was as pathetic as I have come to expect.

Then it was off to Lowestoft for a week's holiday with Pip and The Boy. This would have been a great idea, and I felt extremely well-rested, except for the bit where I came home to discover that I had to fit in a whole lot of extra housework because while I'd been away Steve had been having one of those weeks.

I finally got to go into town to open a bank account in order to receive Direct Payments, to pay for the care Social Services assessed me as needing.

"The whole thing is a bit chicken and egg, really - to get Direct Payments, I have to go into town and set up a bank account, but that's a major excursion for me, so really, I need Direct Payments to pay a PA to go into town with me to set up a bank account so I can get Direct Payments to pay a PA..."

I had another job interview which didn't go so well as it turned out to be for a full-time job, and much as I would like to, there is no way I can do full-time work.

Then my laptop died with a virus of great horribleness. Never before had I picked up a computer virus which my antivirus program couldn't swiftly and efficiently dispatch. We ended up with no real option but a complete fresh reinstall of Windows and then very carefully scanning and replacing files from backups. I know I'm an addict, but I didn't realise it would upset me as much as it did. I will be more careful.

Steve and I underwent the ultimate test of the strength of a relationship - we went to IKEA. We survived.

The Welfare Reforms mooted in February came to the fore yet again. The banker's report is being treated as rock-solid fact, and the BBC is somehow combining stories of mass redundancies with the stereotypical image of benefit claimants as scroungers who cannot be bothered. It scares me.

I got my Christmas Tree and decorated it, and with a stack of assorted presents underneath it was the centrepiece of a wonderful Christmas.

And now, I understand from my charming assistant that the fireworks have been purchased and the weather tonight looks to be cold but clear. Hopefully, see you on the other side - Happy New Year!


Carie @ Space for the Butterflies said...

Happy New Year - I'll be keeping an ear open for a loud bang from a neighbouring village

Pandora Caitiff said...

Happy New Year! All the best for 2009 to you, Steve and Bloop!

Until you sit down and think about it it is easy to think you haven't achieved anything in the last twelve months. And then you start writing, and things just mount up :)

Mary said...

Happy New Year to both of you :)

Mandy said...

Happy New Year!

Mary said...

Spamtastic! First spam comment of 2009 received on January 02, 2009 at 3:47:00 AM. Deleted just under six hours later.

Happy New Year to Mandy as well.

Maggie said...

Belated Happy New Year! We had power outages at the caravan most of the day on the 1st, so am only now catching up on Blogs.

Best wishes from a field in Bwlchtocyn!

seahorse said...

That's a great review! Especially good if you're a random flitter as I am, only remembering to catch up with blogs I like when my brain shows a rare flash of working. What a year. Love the Gorilla post btw.