Wednesday, February 27, 2008

Witty Title Goes Here

So, I've been being very organised about this whole DLA business. I phoned the Benefit Enquiry Line to get a form sent to me that would be date-stamped so that my claim, if successful, would be backdated. I scoured the members area of Benefits and Work and saved a copy of the guidelines to filling in the adult DLA form on physical health grounds. I went through that document and made a Notepad file with my notes based on what would be most relevant for me. Next, I downloaded a copy of the new form (it's different to the forms I filled in before. There's only one of it and it's a lot more reminiscent of the IB50). Then I started slowly working on one question at a time, typing my answers into another notepad file.

A number of people who know me in real life were lovely enough to say they would write statements for me, detailing their experiences of my care and mobility needs, if I told them what was needed. So I whipped up yet another notepad file, this one being a rough guide to the sort of information the DLA people are looking for.

Today, the actual forms arrived. There are 63 questions. Unfortunately that's not a useful number. "Date of birth" is one question. "National Insurance number" is one question. However, on the other side of the coin, "Would you have difficulty preparing and cooking a main meal for yourself? Is there anything you want to tell us about the difficulty you would have planning, preparing and cooking a main meal?" is all one question.

Having got to a point in my notepad file-o-answers where I was feeling really useless and like I wanted to throw my laptop across the room (question 32, if anyone's keeping track), I decided to start working on the form. After all, my notepad files are a bit pointless if the actual form remains blank.

And, ladies and gentlemen, I have made my first mistake. Question 6. "Address where you live", I got my postcode wrong.

I am wondering whether to make a note of this in the Additional Information.

Earthquake

Sorry this post is hardly original.

So yes, at 1am on Tuesday night or Wednesday morning depending on how you look at it, there was an earthquake in the UK.

For me and Steve, in the Midlands, it was enough to wake us up, with the bed shaking and the wardrobe doors rattling, but there's no actual damage.

I am not proud of my reaction, but I suppose it should be documented here...
- I woke up.
- Steve woke up.
- bit of sleepy "WTF?"
- shaking stops.
- Steve decides to go downstairs to check things over, make sure there's no disturbing smells of gas or anything.
- I tell Steve I love him very much. Thought process: There may be a gas leak or aliens might be invading or something and we might all die a fiery death. I wouldn't want him to die without definitely knowing. I wouldn't want to die without having told him. But I'm warm and cosy and I'm stuffed if I'm getting out of this bed. If I die, I die comfy.

Let's hear it for priorities!

In other news, my DLA form has arrived. I would be working on it right now, but I had a broken night's sleep and feel like I've been scraped off the pavement with a pressure-washer.

But, a big big thank you to everyone, on and offline, who has offered to help. You are all very ace.

Thursday, February 21, 2008

Giving in

I'm going to attempt to claim DLA again. Yes, I know. Don't ask.

I've been going through the members' resources at Benefits and Work and it looks like where I'm really going to fall down is that I have not maintained a raft of professionals to back me up.

My condition cannot be 'cured', the best the medical profession can do for me is help me to control my symptoms.

The first year of my illness, I had any amount of assessments and tests, physical, neurological, psychiatric, you name it, and I was tried on all sorts of different medications and treatments (within the constraints of NHS provision) until we found the optimum combination for controlling my symptoms - not perfect by a long way, but the best we could do.

After which, my medical treatment pretty much dwindled to a repeat prescription every month, and the occasional GP appointment if something acute happened. There was no point remaining on the books for the Pain Clinic or the neurologist or the butcher, baker or candle-stick maker, knackering myself out by hiking off to appointments at hospitals ten or twenty miles away. They had nothing further to offer me.

Wrong. There was a point. They could have provided extra confirmation about my condition and my limitations to the DWP. As it is, the DWP have a computer, and if the computer sees that I am only treated by my GP, and that I've only had a few appointments with my GP in the last 12 months... then it will calculate that there isn't much wrong with me and send me on my way. There are no prizes for attempting to "not be a burden on the NHS" and so on. That's not playing the game properly, it seems.

I have to try and convince the humans that the computers have it wrong on this one.

I'm going to be working on this for a while, blogging might become minimised.

Monday, February 18, 2008

I Demand A Recount

Friday: felt ok. Came back from work a bit sore, a bit tired, a bit glad it was the weekend, but nothing out of my ordinary.

COLD SNAP

Saturday: spent it in bed. A couple of hours propped up on pillows with the lappie, but mostly, snoozing.

Sunday: a bit better than Saturday, but still confined to the upstairs floor of the house. In the evening, a sudden downturn.

Monday: Almost back to my normal. I even fixed my own breakfast.

REALISATION: I'll be going to work today. I feel ripped off of my weekend. There should be rules about having a non-weekend due to sickness.

DISCLAIMER: Yes, I'm complaining about going to work. Rest assured that if I feel awful again later today, or tomorrow, and I have to call in sick, I'll probably complain about NOT going to work.

I bet you're grouchy too when you're this sore.

I will try and post something a bit more thoughtful over the next week.

Wednesday, February 13, 2008

Finished Item: Birthday Sock


Sock on a biscuit jar
Originally uploaded by girl_of_bats
Of course, socks traditionally come in pairs, and I have cast on Birthday Sock 2, but the way things are at the moment, even the completion of One Sock is enough to warrant celebratory feelings.

It's... not a good time. Several things, some bloggable, some not, are causing a certain amount of stress right now. A small taster...

I suspect that tomorrow I have to call the Tax Credits people and/or Royal Mail because of a problem with the paperwork I sent by Recorded Signed For post last week not being flagged as 'delivered' yet. This is going to be made more difficult by me being rather iller than usual at the moment. I suspect I have to make a doctor's appointment as it's getting to the "beyond a joke" point - without Steve, I would be well and truly stuffed by now. I'm worried that even with Steve's help I might end up having to take time off work if my health doesn't pick up again sharpish. I have to sort out some more stuff with the DWP as well.

You get the picture.

I also have to write up a feedback report for Access to Work. Well, I don't have to, which is why I haven't done it yet. But I've been asked to, and I feel like I should.

I need to get some serious praise in for my current adviser, who has been fabulous and got all sorts of things (the taxis, the squishing machine) sorted out pretty much next-day, and I want to say nice things about the scheme in general.

But I also really need to let them know about the problems I have encountered with the system, like the trouble I had getting onto the scheme, the attempts to make One Size Fit All, the catch-22 of not being able to apply for the scheme until you have a definite job offer, but the difficulty of negotiating for a job offer without knowing whether you're likely to get help from the scheme or not.

Actually, if anyone can think of some good phrases I could use, please do put them in the comments, because at the moment I'm having trouble properly saying things I want to say without (a) it coming out wrong and everyone looking confused, (b) half of it coming out before my brain goes off at a tangent and I fail to communicate my original point leaving everyone looking confused, or (c) it coming out right, but far too abrupt/rude/blunt and leaving everyone looking distinctly pissed off. I need all the help I can get.

The sock came out well though.

Wednesday, February 06, 2008

Pancakes, Mary-style

You will need:
flour
eggs
milk
oil

Preferred toppings: I like sugar, cinnamon and lemon juice.

long-suffering assistant (Evilstevie)

Reassure long-suffering assistant that the washing up won't need doing before this meal. Measure out about six ounces of flour and dump it into a bowl. Add a little pinch of salt. Make a little hollow in the middle of the flour, and crack two eggs into it.

Take two phone calls from people whose calls you consider "important". Completely lose track of what you are doing. Make sure the long-suffering assistant has no idea how long you are going to be on the phone and thus remains unsure what sort of thing he should be doing to amuse himself.

Phone calls dealt with, attempt to whisk the eggs and flour.

It will take just under ten seconds for you to realise that this was an extremely bad idea and that the eggs and flour should in fact be mixed by hand with a fork or spoon. You may wish to practice some inventive swearwords for this stage.

Try to improve this situation by adding a little bit of milk. Realise you are getting nowhere fast. Use a teaspoon to scrape the worst of the mess off the whisk and add about a quarter of a pint of milk. Bash the not-turned-on whisk against the milk and mess until it's a little bit more like thick batter. Breathe sigh of relief that things are back on track.

Retrieve long-suffering assistant from behind the doorframe, where he has been trying to listen in to make sure you are not in difficulties, while not getting in the way of batter-related WRATH.

Add a smidge and a gnat's of milk, until the whisk moves through the batter without lumpiness or stickiness. Whisk it until your arm gets tired, then stop and have a nice sit-down while the mixture settles.

After your sit-down, add another quarter of a pint of milk and whisk again (serious note: letting it settle before adding the second half of the milk is a genuine tip that I think makes the pancakes better). It'll be easier now the mixture is thinner. Tell long-suffering assistant that it is time to fish out the frying pan.

Do NOT decapitate long-suffering assistant for pointing out that your preferred pancake-flippy tool needs washing up. This would make it more difficult for him to actually do the washing up.

Heat a little oil in the pan over a medium heat. Using the ladle, pour some batter into the pan and swirl it a little to spread it thinly and evenly over the surface of the pan.

Insist that only boring people make round pancakes.

When pancake is lightly browned on one side, flip it over with the now-clean pancake-flippy tool. Watch as large bubbles form in your pancake. Realise you used self-raising flour. Insist this makes them "light and airy" while smacking the bubbles into submission with the flippy tool.

Slip pancake onto plate. Offer flippy tool and in-front-of-hob perching stool to long-suffering assistant "so you can make your ones whatever shape you want."

Add enough sugar, cinnamon and lemon juice to your own freshly cooked pancake so that none of the above matters any more.

Repeat these five stages until there is no remaining batter.

Sunday, February 03, 2008

Let It Snow

... but, if it's going to snow, could it at least have the courtesy to do it properly?

Like many other people with chronic illnesses, my condition is affected by the weather. Snow in particular poses a problem, the combination of low pressure and low temperature giving me a double whammy of Bad.

So when we had an hour or so of snowfall in the late afternoon/early evening of Friday, I was practically a human barometer. I started work feeling my normal self, but at about 4pm I started feeling rotten and shortly after 5pm I was curled up on the floor flinching from the light and trying not to be sick.

Thing is. I would never go so far as to wish it didn't snow. Snow is fun for lots of people and it looks pretty, too. Even if you don't want to go out in it at all, there's a lot of satisfaction to be had in curling up on the sofa with a thick jumper, a hot water bottle and a steaming mug of hot chocolate, gazing out of the window and thinking "ooh, I'm glad I'm not out in that."

That's not what we got on Friday though. We just got big fluffy flakes that melted almost as soon as they'd landed. What's the point in that? Proper snow or none at all, that's what I say. None of these half-measures.

In other news, it's been hard to miss the story about the investment banker David Freud who spent three weeks examining the UK welfare system and published a report which was "highly influential" on new reforms to the system. These reforms have been outlined by James Purnell, a man who has been Work and Pensions secretary for all of a week. Perhaps the reforms are more substantially the work of the previous Work and Pensions secretary... one Mr Peter Hain, who left the position without giving notice, and only did the job part-time anyway, between his other occupations of being the Welsh secretary, and trying to persuade everyone that his failure to disclose donations (for his failed attempt to become deputy leader of the Labour Party) WAS due to incompetence, rather than wilful fraud.

Bearing those track-records in mind, it's hardly surprising that Mr Freud's report contains a disturbing amount of inaccurate information, as well as a certain amount of the 'I don't believe it so it can't possibly be true' philosophy (why is it so unthinkable that at any given point, 500,000 (about 2%) of the 25 million people under 35 in this country are incapacitated in some way?).

I don't want to bang on about this one today - most of my opinion on the demonisation of Incapacity Benefit claimants in the media and their use as a political football can be found in this post - but really, this guy is incredible. Let's just take one example:

"He told the Daily Telegraph it was "ludicrous" medical checks were carried out by a claimant's own GP," because "they're frightened of legal action."

Well, yes, it would be, if this were the case, which it isn't.

A claimant's own GP IS required to fill out a report on a claimant, on the basis that they are likely to be at the centre of a claimant's medical treatment. However, reports are also requested from: the claimant themselves; other medical professionals treating the claimant; and from the "person who knows the claimant best" which could be a carer or friend or relative. An independent medical professional employed by the DWP decides if all the various reports support each other, and quite often, the claimant is then required to travel to another town in order to attend an appointment with an independent DWP doctor who makes yet another report. The whole lot then passes to a panel of bureaucrats who make a decision on whether benefit should be awarded. I cannot spot anywhere in this process which allows for legal action to be taken against the GP unless they were to knowingly provide inaccurate medical information.

If the esteemed *anker has ANY evidence to back up his belief that there are 185,000 claimants working illegally, and a further 1.5 million claiming fraudulently, then he owes it to all of us to pass that information on to the National Benefit Fraud Hotline, either online or by calling 0800 854 440.

Simply making life even more difficult for people trying to cope with a long-term illness is not going to help anybody.

PS, I'm feeling physically rubbish, but in myself, I've perked up a lot in the last couple of days. Not quite as nauseatingly happy as I was a couple of weeks ago, but I'm working on it.

Thursday, January 31, 2008

Balancing

Phone call from Mum today, who read my last blog entry and got all concerned about me. Aww. Mum, you are ace. But now I have the guilts for not phoning/emailing you at least once a week like I meant to.

I also have guilt about not having updated my blog in over a week. I'm not sure how many people read it, but more people than I ever expected spare the time to leave comments, and not just people I know offline either, and I do appreciate it. So sorry if I worried anyone.

The thing is, on the one hand, I Am Okay. There have been no fires or explosions, no trips to hospital, no baliffs at the door or any other Nasty Things happening.

But on the other hand, there's been no finished knitted items, no lovely jaunts out and about, no wonderful bits of news or other Nice Things happening, either.

I'm just balancing, one day at a time, with circumstances that are still slightly stressful and less-than-fantastic.

For example, I still haven't had my appeal form from the Tax Credits bunch (I phoned: apparently it was sent second class and I should call again if it hasn't arrived at the weekend). I'm still having a rough ride physically, with more fainting, more headaches, more muscle pain, and more problems with things like memory and speech when compared to December. The GET is postponed for at least a month or so, I reckon. Everything is just null.

That's depressing. There must be something.

Aha! Yes! Of course! On Sunday Steve went to support his cousin Simon who was taking part in the 2008 Toughguy event. I didn't go - getting up early to go and spend most of my Sunday standing around in a muddy field in January isn't my idea of fun even when I'm feeling good - but it was fun hearing about it when Steve got home.

Simon, being a nutter, decided that doing what amounts to a cross-country run combined with an army assault course simply wasn't interesting enough any more.

He therefore opted to do the course wearing a pair of trainers, a pair of gloves, a pair of speedos, and a pink inflatable rubber ring.

Go on then, have some pictures.

Wednesday, January 23, 2008

Crash

Oh, it's all gone horribly wrong.

The attempt at GET has been called off on account of (1) me not having a bloody clue what I'm doing (see comments, previous post), and (2) me ending up feeling like I'd been scraped off the sole of my own shoe (probably because, see 1 above). I think I'll settle for: as long as I get up every day and go to work when I'm supposed to, then I'm doing quite enough.

The Inland Revenue have been sent me a nasty letter. It's to do with my Working Tax Credits claim from 2003. You don't want to be bored to death by the details - suffice to say, I haven't claimed or received any money from them since I stopped work in 2005 (because, Working Tax Credits, duh), I hadn't heard from them since 2006, I thought everything was fine, I even have a letter from them saying that I owe them nothing and they owe me nothing... but now I have a bill for over £500, which, frankly, is more than a month's wages, and an accompanying letter threatening legal action and 'interest accruing daily until the balance is zero'. I fear this may take a lot of untangling.

Steve keeps injuring himself (mostly hurting his back or his leg) and I can't do anything to help. He's also studying really intensively, so by the time I crawl in from work, we're both shuffling about like the living dead - in body and in brain - to try and prepare a semi-nutritious evening meal between the two of us. It would be comical if either of us were brain-awake enough to appreciate it.

It's the end of January. 'Nuff said.

Even my yarny is causing problems - I started turning the heel on my sock and lo, halfway through the ball, a KNOT. And not just a tangle which with care and attention might be unpicked. No, this was a proper, two definite ends of yarn, tied together in a big ugly knot. Okay, so not the end of the world, I cut it off and then started knitting again as if with a second ball... but for pity's sake, this was supposed to be my birthday-treat, make-me-happy, pleasure-to-knit-with super-nice yarny!

Send positivity soon plz.




*Note for foreign readers: Working Tax Credits are a kind of UK welfare benefit that you get if you are in full-time work, but earning less than X amount. Various factors (including children, disability, hours worked, phase of the moon, consumption of cheese etc) are taken into account when figuring out (a) what that X amount should be for each person and (b) how much Tax Credit that person should be given. The system is hugely complicated and has lurched from one catastrophe to another since it began.

Monday, January 21, 2008

Still Good

Okay, so the Dopey Happy wore off. In the last week I have experienced a full range of emotions both positive and negative. But nothing too extreme and nothing that I thought was worth blogging about.

Plenty of good stuff has been going on though.

Firstly, what you might call my Graded Exercise Therapy (although it's not official, it's just what I've decided to do) has got off to a good start. The plan is, to do a little bit of a walk each day, gradually increasing over the course of several months until I can walk what you might call "a useful distance". I'm letting myself off on days when it's raining (because I can't carry an umbrella) and if it gets icy, I won't go out then either for obvious reasons. But still. Phase One is to walk to the end of the road and back, once a day, a round trip of approximately 400 metres. It hurts, and it takes a while, and I have to stop to rest, and I feel awful when I get back to the house - but I'm doing it, and feeling quite proud of it. Once I'm definitely on top of doing that walk every day, and managing to stay on top of it for a couple of weeks, the next step will be going round the corner to the next corner of the block, making a 600m round trip. Once that's nailed, it'll be the post-box - 900m - and after that, completely round the block, which as far as we can work out, is a full kilometre.

Then, it'll only be another 200m on top of that, to get me all the way to the bus stop, which is my definition of "a useful distance". Unfortunately that last 200m is all uphill, so we could have upwards of a year to go before I swap my community transport membership for a bus pass. Still, like I say, Phase One is going well.

Secondly, the jumper I'm knitting - my first adult-sized one - is coming along nicely. I am only a couple of rows away from having the back piece finished. I think I should get it done tonight, and probably cast on for the front piece as well. As I suspected, I am on schedule to get it completed just as the weather gets a bit too warm to wear a jumper.

And thirdly, Access to Work. Since I bang on about all the trouble I have with these schemes, it's only fair that I should report when things go right.

The job I do has two major elements. There's the boring part, which is looking at the order someone has placed, picking the CDs they want off the shelves, scanning them to book them out of the stock, and printing off the paperwork. Then, there's the really totally insanely boring part, which is wrapping and packing each set of CDs and sticking the paperwork into a documents pocket on the package.

The packaging we use is this self adhesive corrugated card, with the hand press which squishes the layers of card together at either end of the package, sealing it. As you can probably imagine, it's rather difficult for me to use. I can do it once or twice quite easily, and I can do it five or six times without too many problems, but after about the tenth package, I can barely lift my arm any more, much less squish the card with the force required to seal it properly.

Of course, usually I'm not working alone, so I do the picking, and my fit, healthy and energetic CoWorker#1 does the packing. But there are two problems with this. Firstly, it's unfair on CoWorker#1 to always be doing the insanely boring physical part of the job. Even if he didn't complain, I would feel bad about it. And secondly, CoWorker#1 does sometimes get sick, or take holiday.

This might have been enough to make me turn around and say "okay. I can't do this job for four hours a day after all," except for The Machine. The Machine was sent to us on approval at about the same time as I arrived. It works much like a mangle. Two mechanical rollers spin, and you feed the end of the package through, and it squishes the card shut. No physical strength required. It means I can do as much of the "packaging" end of the job as they want me to do.

However, the approval period has come to an end. It's an expensive piece of kit, and I'm the only one who needs it - CoWorker#1 hates it (he just can't get the hang of it) and no one else does enough packing to have an opinion either way. In the words of The Boss, "so you find it useful... but is it really £severalhundred worth of useful? Because we don't exactly have that much money going spare."

Well, it's necessary for me to be able to perform all aspects of my job description. Enter Access To Work. There's a certain amount of paperwork to be done (isn't there always) but the advisor reckons we can get help with purchasing The Machine. I don't have to give up my job. CoWorker#1 doesn't get the nasty end of the stick regarding distribution of tasks. The Boss doesn't end up out of pocket. Everybody wins!

Saturday, January 12, 2008

Dopey Happy

I really am quite stupidly, insanely, indescribably happy right now.

No reason.

In fact it's been a rather pants few days really - notable points of the last 48 hours include slicing my thumb open while chopping carrots, and getting out of my taxi all ready for work on Friday afternoon and promptly fainting, straight into a puddle, and spending the afternoon wearing cold, wet jeans. Not really up there in the "fun" stakes.

But nevertheless, I feel really positive.

I've just spent the best part of 45 minutes reading a book while Bloop the Roomba cleaned the living room carpet. Every few minutes I was looking up and watching it make its way around the room, thinking and sometimes saying "this is amazing. I live in the 21st century. I have a robot doing my housework."

Carpet cleaned, I took a few photos of the jumper I'm knitting. Again, it was all "wow, I made this, with my hands, I knitted each of these many many stitches, and it's all the right numbers and shape..."

Prior to that I was eating dinner with Steve, which was also incredible. Here's a really nice bloke, who I get on well with, and we're living together, and everything is happy and nice and working out well. It's astonishing.

I almost hope it wears off by Monday, because if I'm just wandering about with a Big Stupid Grin on my face going "hey, that's fantastic!" at everything I see, I'm not going to get a lot of work done.

It can continue tomorrow though.

Friday, January 11, 2008

Obligatory Incapacity Benefit Post

My birthday improved no end over the two days after the actual day. Also, Steve and I have decided that we'll probably not make a big thing about his birthday in February, and just have an "official" birthday for the two of us some time in late spring/early summer.

Every disability blogger and their dog is doing a post about the current government/media demonisation of disabled people. I thought about it but wasn't sure if I could rustle up a whole coherent post about it. Here's the main points I would like The Great British Taxpayer to bear in mind:

1) Not every disabled person is on benefits. In fact, I'm going to go out on a limb here and suggest the possibility that there may be more disabled people who are not on Incapacity Benefit, than there are people on Incapacity Benefit who do not have a disability.

2) Not every person on benefits is a fraudster. I accept there will be some fraud, but that doesn't mean every claimant is a con-artist, just like one City businessman doing a phenomenal tax fiddle doesn't imply that every taxpayer in the country has dodgy accounts.

3) If you really know a person who is fraudulently claiming Incapacity Benefit - you actually know for a fact that they no longer have or never had the specific problems which they claim stop them from working, or you know that they are doing undeclared paid work - then report them. Please. You'll be doing us all a favour. The National Benefit Fraud Hotline is 0800 854 440...

3a) ... but please bear in mind that you do not have access to their medical history and that "disability" does not equate to "uses a wheelchair all the time". That there is a difference between managing to do something once a week (with a wheelbarrow full of medication, and time to both prepare and recover from the effort) and being capable of doing it several times a day every day. That some people have hidden conditions and look perfectly fit and able right up to the (unpredictable) point where they really don't. And that many people are using all their resources to cope with the basics of day-to-day living (bathing, dressing, cleaning, cooking, eating, attending dozens of medical appointments) and just don't have any spare for putting 37 hours of work each week on top of that.

You will look like a prat if you report Bob because you saw him walk to the corner and post a letter with no difficulty, but it turns out that the reason Bob is deemed unable to hold down a job is because TV screens, monitors and florescent lighting all trigger fits for him.

4) I've yet to meet the disabled person who says to me "I don't really want a job, I'm perfectly happy on benefit." What I have heard time and time again, are big long lists of types of support - not unreasonable things either - that a person needs to have in place in order to do a job, which no agency, scheme or individual seems prepared to supply. Simple things like "If I start work at 9am, then I need the carer who comes to help me wash and dress in the mornings to turn up at my house earlier than that, and they won't." Essential assistance and medical treatment for disabled people tends to be based around them being unemployed.


To be blunt though, I'm glad I'm out of it and hoping I can stay out - it looks like "getting tough" on disabled benefit claimants is going to be a big thing for the next election.

Monday, January 07, 2008

26

Happy birthday to me. Sort of. I'm beginning to think I might be karmically paying for having had such a great Christmas.

My birthday did not get off to a roaring start. I'm feeling utterly, utterly rubbish at the moment. This particular definiton of rubbish is the one where I had to cancel the plan for Steve and I to go and have a nice lunch at the Victoria Coffee House because it would have taken so much out of me that I wouldn't have been able to manage work afterwards. When you feel so rubbish that you have to cancel Exciting Plans at the level of sitting in a quiet cafe with your boyfriend... that's pretty rubbish.

I have no presents, and one card, which Steve went out to get while I was at work this afternoon. This hasn't been the worst birthday I've had, but it's a long way off being one of the better ones.

BUT, I do have cake. Let me tell you about my cake. It's good cake. I'd found a little sandwich-shop type place supplied by the same small business that made my mum's wedding cake a couple of years ago. I bought a couple of gift-boxed chocolate brownies. Some excerpts from the ingredients list on the box:
Dark couverture chocolate (32%) (min cocoa content 53.8%)
Sugar
Cocoa butter
Madagascan vanilla
Espresso coffee...


AND, there were lots of phone calls and texts. Apparently not all parts of my pressie (very mysterious!) from my family are with them yet, they were kind of hanging on and hoping, but as it is, mum says she's sent the bits they have got special delivery and they should be with me tomorrow. I am very curious.

One thing that made me super-happy was when my mum told me that my grandmother had asked for my phone number so that she could call and wish me a happy birthday. This is impressive because:
1) My grandmother really, really, really hates using the telephone and will go out of her way to avoid having to make or recieve calls. She can just about deal with calling her own kids and panics if she gets an answerphone.
2) My grandmother lives in Germany. Her English is about as good as my German, ie, Not Very and uses a great deal of mime.

So the fact of her being prepared to make a telephone call, risk the possibility of someone she doesn't know (Steve) answering it, and take her best jump at the language barrier is really quite something. However, we don't have a landline phone, so she was spared it and I got my birthday greeting from her via my mum later in the day.

Work was ok, I was very tired but as I've said before, my co-workers are really good about giving me any help I need, and for the most part it's a fairly simple if time-consuming job. I shared my cake but there's still quite a bit left over.

I think I'm going to have another, pretend birthday later in the year to make up for this one having fizzled a bit. It is possible that this is just any excuse for more cake.

Tuesday, January 01, 2008

Woo! It's 2008!

Nearly didn't make it though. We had a bit of an... incident... with the fireworks, shortly after midnight.

Firstly, I should explain that we tend to be quite sensible with fireworks. We have them maybe 3 or 4 times a year, at the home of E and L. There is a patch of dug earth (once a vegetable patch) at the bottom of their garden, furthest from the house, and Steve and E go out some time beforehand to plan the display, dig in the launch tubes and whatnot, taking their time and thinking it through. We even use a remote detonator - five electrical cords, one end clipped to the firework fuse and the other end plugged into a little box of tricks, which in turn has a remote sensor, and the remote control is with the spectators. This is not a "light the blue touch paper and stick it up your nose" kind of event.

So at about 11pm, the boys wandered outside to begin setting up. The remote detonator will take five fuses at once, so we had two big rockets, two smaller but still quite sizeable rockets, and one large box which fired about a hundred shots of various types (big, small, noisy, crackly, you name it) but just off one fuse. The display was meant to last just a couple of minutes, and having it already set up meant that as soon as Big Ben bonged, we could run outside, push the button on the remote, and wheeee!

I have since heard from Steve that there was some debate over what order the fireworks should be set off. He insists it was E's idea that the box should be first, and then the rockets.

Anyway, at five to twelve we started getting our shoes and coats on, and at midnight we did the countdown with the tv, hugs and kisses and yay all round, outside, and pressed the button, and our fireworks started, and it was pretty and wonderful.

Until the fireworks from the big box started doing their "fan" setting, two flares simultaneously fired, one to the left, one to the right. And it knocked one of the rockets that was ready and waiting to be set off. Not hard, but it moved just a little as the right-hand flare went past to explode in the sky. And again. And again.

What to do? No one was about to run back to the immediate vicinity of a still-firing one-and-a-half-minute barrage box just to make sure an as-yet unlit rocket was perfectly upright.

Then it caught.

There was just enough time for E (who had the remote) to say "I didn't set that off!" and it took off.

Or it tried to.

It had been knocked just enough, or maybe it lit in the wrong place, but anyway, it clipped the fence and fell back into the garden.

Still fizzing.

BOOM.

E, L and I had ducked, turned to face the wall, covered our heads, that sort of thing.

Steve, on the other hand, was happily taking photos of fireworks exploding against the night sky and was utterly oblivious to events at ground level in the garden.

The first he knew about it was when there was a bang that we could feel and a glowing piece of something quite solid landed on his trousers, at which point he took his eye away from the viewfinder of his camera, started patting himself out, looked to one side, saw me brushing ash and debris off myself, looked to the other side, and saw a charred, spent, 3-feet-long wooden stick with empty rocket bindings that looked suspiciously familiar sitting only a few inches away from him. Smoking.

Swearing may have occurred.

We were a little bit shaken as we watched the rest of the fireworks. There was also a bit of concern when we saw that all five of the electrical fuses had fired, but there was still a rocket that hadn't gone off. This happens sometimes, a duff fuse or whatever, but this time round we were a little bit more cautious than we usually are about hunting out a lighter to make it fire the old-fashioned way. Disturbingly, it was Steve who was going "it's fine, it's definitely not lit, you can see that, give me the lighter" and so on. Maybe he just felt invincible or something. Anyway, the final firework went off safely, and we hung about for a bit with sparklers watching other people's displays

Anyway, we're all feeling pretty good, it could have been Very Bad Indeed but as it is, we're all okay. I have asked Steve to please not be dead any time soon. To back up my position, I pointed out that if he was dead, I would have to claim Tax Credits in order to get by, and no one deserves that. He agreed and will do his best to not get killed this year.

So, after that slightly shaky start to the year, things are pretty normal now. I have today to rest up and try and recover, and then tomorrow it's back to work. Thursday is the day I'm really worried about. My Specific Co-Worker won't be in, and although it's not like I'll be alone in the building or anything, I don't want to have to keep asking people (who already have other jobs to do) if they could give me a hand with XYZ. The Christmas rush seems to be more or less over, but it's still really a two-person job and I fear I may finish the day slightly behind on the work that needs doing. Even if I'm having a good day, four hours of Mary-effort is never going to equal four hours of Mary-effort plus eight hours of Co-Worker effort.

I also want to order some sort of birthday cake.

Saturday, December 29, 2007

2007 - A Roundup

January
A wonderful birthday, followed by all sorts of hassle from a bunch of cowboys at a computer shop in Lowestoft which shall remain nameless but is found North of the bridge.


February
Benefits-wise, I found out that my Incapacity Benefit (the money you get to live on if you can't work due to illness) was secure until 2010, but then I had to start on renewal forms for my Disability Living Allowance (that's the one you get regardless of work or income to cover the additional costs incurred by the fact of your disability). The form filling and a bout of particularly poor health meant that I spent a lot more time than usual laid up in bed, but I managed to get out for a bit on Steve's birthday, which we both enjoyed.


March
A friend of mine, Jesse, sadly died after many months fighting the double-whammy of heart problems and cancer. I couldn't blog about it at the time - Jesse had been forced to close his blog a few months previously because of a spate of trolls who seemed to be getting their kicks by attacking several vulnerable people (myself included) online from behind a shield of anonymity, and it didn't seem right to offer them another chance to have a pop at him in death.

In March, I also taught myself to knit, which has paid dividends, and first gave thought to buying a Roomba.


April
I found Web of Wool and Twitter which have both been positive in different ways. My knitting progressed, my health picked up a bit, and I met The Locum Doctor who was covering for my GP while she was on maternity leave.


May
May started with Blogging Against Disablism 2007. Unfortunately the same day I also ran up against problems with The Locum Doctor (which we found out several months later were due to an error on the front page of my medical records, but not before The Locum Doctor's Report had lost me my DLA award).

Pip and I made all sorts of plans to have a nice summer with the Littlun, but these were scuppered by various factors including the way the summer of 2007 never really got off the ground. Days out enjoying the sunshine were swapped for feeling extra-awful every time the weather changed. On the other hand, this meant my knitting really took off.


June
Again, a bad start, as I found out for definite that I had been turned down flat for DLA, despite my condition not having improved. June consisted mostly of short bursts of Doing Things to try and mount my case for a reconsideration of that decision, and long periods of waiting for the DWP to do the things they were supposed to do, like sending me forms and information I'd asked for.

I did a fair amount of blogging ("The reason I'm blogging when I should be working on my response, is because after a couple of sensible, thought-out responses, referencing evidence on my forms and the report from the specialist clinic and so on, I got to a point where all I could think of to type was "read my goddam forms, you morons". I doubt this would go down well with the reconsideration lot..") and quite a lot of knitting - I completed my needle case which really helped me to stay positive, having a tangible item that I had created. There was also a happy co-incidence when "NS13", a major overhaul of an online game I play, happened just at the same time as me having sent off my DLA Reconsideration paperwork, so I had plenty to get on with while I waited for the reconsidered response.


July
The reconsidered response was another rejection of my DLA claim. I was gobsmacked, as was everyone around me, the people who could see the effect my illness had on my life. "Two years ago, the facts I told them resulted in me being given the middle level of DLA Care component and the higher level of the Mobility component. Today, those same facts result in zero. How can this be right?" I had the right to appeal, but I wasn't well enough - even doing the forms had been making me more and more ill. I made the decision not to appeal and my family and friends breathed a big sigh of relief. It was easier for them to support a Mary with no money but some energy, than a Mary with some money but no energy and a shedload of stress.


August
There was a noticeable improvement in my health, probably due to a combination of the DLA-stress and time-consumption being removed from my life, and the weather steadying out a bit. With the help of other bloggers, I learned to knit in the round on double-pointed needles and I successfully knit my first sock, which I was very proud of. Pip and I took Littlun for a haircut, a course of action it has been decided to NOT repeat. Pip has since arranged to every so often borrow a set of clippers from a friend and do the boy's haircut in short bursts when it's most possible.


September
The second sock was completed, making a matching pair, and even now I'm still very proud of them. Steve and I set a date for moving in together and I began winding up my life in Lowestoft. Sorting out the admin side of moving house was nowhere near as stressful as dealing with the DWP/benefits lot. In fact the only bit that caused any significant trouble was... the DWP/benefits lot.

I had a doctor's appointment with my Regular GP, back from maternity leave. I told her what had happened with my DLA claim. She was shocked, so I told her about what happened with The Locum. She was even more shocked, checked my records... and found that the front page had never been updated to include ME/CFS as an "ongoing condition". Oops.


October
I finished my first knitted garment - a jumper for the Littlun - just in time for Steve to give it to him when he drove a van to Lowestoft to pick up the last of my stuff from my flat. As time went on I settled more and more into living with Steve, and initiated the wrangling with the DWP/Jobcentre to try and get them to help me into paid employment.


November
Joined Ravelry. Bought a Roomba. Realised that life really is quite a lot easier with Steve around, which allowed me to increase my estimate of how many hours of work I could do per week, which in turn meant a higher chance of a job advertised in the local paper matching my spec. In the space of five days I spotted a suitable job-ad, sent off my CV, was offered an interview, attended the interview, and was offered the job. I started work on Tuesday November 13th. It took the rest of the month to organise help with viable transportation to and from work - DWP again, causing more trouble and stress than the job itself. At the end of the month, a really nice surprise - flowers and chocolates to welcome me to the team and congratulate me on learning the job so quickly.


December
It wouldn't really be a month without a cockup from the DWP, and December was no exception. Despite telling several departments in several formats that I had started work, I noticed they were continuing to pay benefit into my account. Happily they've stopped now, but I've yet to get an official explanation or find out what happens to the erroneously-paid funds still sat in my bank account.

Christmas fell in just the right way so that I had a full five days off work - Saturday, Sunday, Christmas Eve Monday, Christmas Day Tuesday, Boxing Day Wednesday. Steve and I went to stay in Lowestoft so I could see my friends and family again. It was absolutely wonderful. We travelled back here on Boxing Day (Wednesday) and I was back at work on Thursday afternoon, which was a bit much for me, but luckily we're past the Christmas rush so I wasn't letting anyone down by being a bit groggier than usual. I'm getting another long weekend for New Year as well, Saturday, Sunday, New Year's Eve Monday, New Year's Day Tuesday, and we're not going anywhere, so I'm hoping that New Year will allow me to fully recover from Christmas and then I'll be back to my normal levels again.


All in all, it's been a busy year, with more ups than downs. It started well and ended even better. I'm happy, loved, secure, productive and relaxed. I'm looking forward to 2008.

Happy New Year.

Thursday, December 13, 2007

One Month On

...and working is still going well for me.

My cold is getting better - thanks mostly to Steve, who is being great about making sure that I get a chance to recover properly, get plenty of sleep, enough drinks and so on. If I was on my own and having to deal with cooking and grocery-shopping and laundry and washing-up as well as work, I wouldn't be managing and the cold would have been the final straw to see me land flat on my face.

If I had landed flat on my face... well, I'd have got up again soon enough. The people at work, up to and including The Boss, repeatedly reassured me from day one of my cold that if I had to take a day or two off, it would be fine, they know I work hard and that I'm not going to take the mickey. Apparently I really did look worryingly ill though.

I am managing to not get too anxious about the muppetry of the Incapacity Benefit bunch.

The taxi driver I have hired to get me to and from work is lovely. He's provided the paperwork I need without batting an eyelid, he's friendly, he turns up on time, and on the one or two occasions he personally hasn't been available to pick me up, he's arranged a different driver, he's sorted out payment with them directly (so I just stay on the simple fuss-free written invoice with him), and he's phoned me to let me know the type of car and name of driver. It's going incredibly smoothly.

I got my paycheque, early so it clears before Christmas. It's all sorted out now for PAYE tax and National Insurance contributions (so there's really no excuse for the Incap muppets). It feels good.

So now, there's just a week and a day of work left to do, and then I have a break for Christmas! Steve and I are going to see my family and friends, I'm really looking forward to it. I think my mum is looking forward to it as well - she's even added my favourite type of orange juice to her shopping list for the week, awbless!

Monday, December 10, 2007

Amazing.

I started work on November 13th. I have been a productive little bunny since then. Not only have I worked four hours every weekday, but I've also worked hard to disentangle myself from the benefit system. Here's what I've done so far:

Round One: On the day I was offered the job, I phoned the local Jobcentre to tell the Rubbish DEA, and the regional DWP office to tell the Incapacity Benefit people. They told me to tell them in writing, so I typed up a very nice letter. In all these communications, I gave my name, National Insurance Number (NINo) (note for foreign readers: this is like a social security number, and is used to identify you on all government, welfare and taxation systems), address and so on, and explained as clearly as I possibly could, that I wished to cease my Incapacity Benefit claim from November 13th as I had been offered a job. I told them how many hours I would be doing and how much I would get paid.

Round Two: During my first week of work, trying to arrange transport, I spent some time on the phone with the local council. Again, I fully identified myself including NINo to several people, and explained about having been on Incapacity Benefit, and having recently started work.

Round Three: Having got hold of Access To Work, who are part of the DWP/Jobcentre, I gave all my details again, over the phone and in writing on their forms, including NINo, date I started work, rate of pay, etc. I was approved for assistance with transport to and from work.

Round Four: The Useless DEA had referred me to Remploy back in October, which would have been great if the sole representative of Remploy in this area hadn't been off sick himself. Well, he phoned me back last week and told me that he could get me some extra money - £150 tax-free as an incentive/bonus for anyone who gets off Incapacity Benefit and into work. Fantastic, thought I, and once again gave my full ID and circumstances, over the phone, and again on a form with DWP all over it.

Plus, of course, I've blogged every step of the way. I haven't advertised my identity too much on here but it wouldn't be too difficult for anyone who put their mind to it, to figure out who I am.

Which is all a rather long-winded way of saying, I haven't exactly tried to conceal the fact of my working from anyone, least of all the DWP. No one can accuse me of attempted fraud, or working on the quiet, or trying to hide the fact that I got a job.

This makes it all the more concerning that, since my start-date of 13th November, two lots of Incapacity Benefit plus of course that famous £10 Christmas Bonus have been paid into my bank account.

And that means that my cold-ridden bunged-up self gets to spend tomorrow morning on the phone to the DWP, AGAIN. Joy.

EDIT 11/12/07
Update:
Phoned the DWP Muppet Show. Gave details. Explained situation as a timeline. May have worried the call-taker by making it clear that I keep notes. The overpayment of four weeks of long-term-rate Incapacity Benefit is a sum that can't just be written off as a rounding error (well, in a national sense it could, but) and so there will be an investigation. A decision-maker will determine whether I have to pay the money back (probably) or how much of it I have to pay back, and also whose fault it was.

STEVE: Surely they'll just say it was your fault, you forgot to tell the post-boy in the foreign embassy or something.

A reasonable assumption, but I have a reason to doubt it. (my emphasis)

Dear Mary,
I am a Disability Employment Adviser with a responsibility to support people back to work who have a disability.
Blah blah blah appointment in October,
Yours sincerely,
The Useless DEA


Which I'm taking to mean that, if there's anyone I didn't know I should tell, it's her fault. She is my named liason with the Jobcentre during the Back to Work effort. She is claiming me as a KPI, I was on her caseload, then I entered employment for more than 16 hours a week. She has a self-declared responsibility to support me.

I'll probably have to pay back the money and I'm not complaining about that at all, as it's money I'm not entitled to and didn't ask for. But damned if I'll take responsibility for ANY of their screwups.

Sunday, December 09, 2007

Urrrrgh

I have Extra Lurgy. Yep, on top of the usual, I've caught one of the glorious bugs that are floating around at this time of year, and I'm feeling crap. Coughing, wheezing, feverish, glandular, snot-ridden Crap. The last couple of nights have been increasingly bad in terms of sweaty-shivering unpleasantness, and last night in particular was just short bursts of sleep in between painkillers and needing another drink of water.

Luckily (although I'm not sure that's precisely the word I'm looking for), it's the weekend, so I'm able to be mostly in bed. I have a good supply of various strengths of painkillers (advantage to chronic illness), I have plenty of Strepsils, I have some Olbas Oil and I have a couple of boxes of tissues. I also have a Steve, who is slightly concerned and fussing a little - but mostly in terms of running me a bath and making me cups of tea, which, you know, I'm really not complaining about.

What is worrying me is tomorrow, when I am supposed to be at work for four hours. Usually when I've been bug-ill on top of everyday-ill, it's been a case of curling up in bed until it's gone. Now I'm working, that's not an option.

I really, desperately don't want to take time off sick.
I really, desperately don't want to make myself iller again in the long-term sense by not allowing myself a chance to recover from this virus (that's the most likely thing that made me long-term ill in the first place).

I don't want to let down the people I work with by being unavailable at the busiest time of year, making them do my share of the work.
But I also don't want to turn up at the shop, do half an hour's working, then pass out, and make people not only have to do my share of the work, but also make them have to spend time fussing over me, making sure I get home safely, writing it in an incident book and god knows what else.

Hopefully I will have intensive rest today, a much better night tonight, and feel better enough in the morning that I can dose up at lunchtime, go to work and just say "look, I'm going to have to be a bit careful today," but still be more or less functional for those four hours.

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In other news, Reynolds at Random Acts Of Reality is having a competition to win some books. I've had no ideas as yet.

Tuesday, December 04, 2007

Christmas Cards

One of the things I think is really important, and often overlooked, is Christmas cards.

No, I don't mean like when you're a kid and you carefully write out cards to all the kids in your class apart from that one smelly poo-head you don't like.
No, I don't mean like when you're a teenager and in competition with a sibling to prove who is more popular and ace based on how many cards you got.
Nor do I mean when your business sends cards to all your regular clients and vendors, or when you keep a couple of blank cards in your glovebox just in case, or those godawful "family newsletter" things where you try and advertise how wonderful your household is, and I definitely don't mean e-cards or worse still, the "happy xmas!" email sent automatically to *everyone* on your contacts list including the various customerorders@shop.com. Be honest now. How often have you ever re-opened a Christmas email or given a second thought about the person who sent it?

No, I mean an actual Christmas card chosen and given or sent to someone you actually give a monkeys about.

You see, it's not just a bit of cheap card (as in "£1 for a pack of ten cards?! That works out at TEN PENCE per card! That's ridiculous! It's only a bit of card! I bet it doesn't cost anything like that amount to make!" and so on).

It's a physical reminder, at this dark, cold time of year, that someone cares and appreciates you. Perhaps you're lucky enough to see and speak with other people every day. Perhaps you're constantly surrounded by people who care about you or at least talk to you. Not everyone has that though.

Let's do a thought experiment.

Your [friend or relative] is at home, wearing three jumpers because it's getting bloody cold lately but the cost of heating is getting silly. They're very much looking forward to Christmas Day, big family meal and so on, but right now, time is dragging by a bit and they're kind of alone and there's not much to do and not much cash with which to do it. The post arrives - a gas bill, some advertising, and a Christmas card from you with a little message to say you hope he/she's well, and maybe a bit of personal news. Not an essay, just four or five lines in the card.

Do they:
(a) read it, smile, put the card on the mantelpiece, and smile again every time they sees it over the next week or so, perhaps even occasionally taking it down to have another little look at it?
(b) read it, and then pop it into the recycling box along with the advertising? (admit it, this is what happens to those bulk Christmas emails)
(c) read it, and then phone you up to launch into a diatribe about how it's a terrible waste of money and playing into the hands of corporate fat-cats, and write you out of their will?

Extreme example, obviously, and if the answer is (c) then Do Not Do It. But I reckon the majority of people - even if they are incredibly busy and popular - would smile upon receiving a card from a loved one.

Sometimes the absence of a card can be as striking as its presence. If you're swamped by a hundred cards from work alone, you probably won't notice that a family member hasn't sent a card. If you're a little more isolated, then you will. If you have three grown-up children and only one of them sends you a card, you will wonder what has happened to your relationship with the other two to make them feel you are not even worth a 10p card and a postage stamp?

The last posting date for the UK (Royal Mail first class) is December 20th. UK people wanting to post to other places should check here.

Sunday, December 02, 2007

Tis The Season



I love Christmas.

Some people get quite upset about that. There's the religious people, who think that as I don't believe the son of God was born on December 25th, two-thousand-odd years ago, I should just butt out of their meaningful celebration. Then there's the anti-religious people, who think that if I am rejecting Christianity then I should reject the entirety of Christmas because blah perpetuating false ideas wibble consumerism et cetera.

I respect both viewpoints (although I realise the tone of the preceding paragraph my put that into some doubt), and as such, I don't mind whether any of the people I know - or any of the people I don't know - spend their December in church praising their Lord and feeling marvellously spiritual, or in their determinedly undecorated houses ignoring the whole caboodle as best they can and burning any Christmas cards that darken their doormat.

But for me, Christmas is largely about the things in the coca-cola advert. Colour and light at the dark time of year. A little bit of magic, even if you know how it was done. Family and friends. Uplifting mood. And, dare I say it, a bit of excess - plenty to eat, plenty to drink, and giving and recieving (with thoughtfulness and good intentions and time and effort and consideration) gifts, including things that perhaps the recipient wouldn't have bought for themselves on their own (ok that's not in the advert, but Father Christmas is, and that's what he represents. To me).

Occasionally I wonder if that kind of thing - the Coca-Cola Christmas - isn't just the next natural progression of the mid-winter celebration/event/ceremony/whatever that humans do have a tendency to do for the last couple of thousand years. Personally, I'm not a Christian or a Muslim or a Druid or a Wiccan or a Pagan or anything else, I think the closest you'd get to classifying me is Apathetic Agnostic. I'm not even a huge consumerismist. But I love the Christmas celebrations.

Warning: There may be more Christmas-based posts to follow.