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!

Monday, December 29, 2008

Standard Christmas Post

That was a nice Christmas. Steve and I had four days off work together which hasn't happened since last Christmas, and that was less a holiday than a hectic whirl of visiting people in between nap-breaks in our hotel room, so really, we needed this.

For me it was five days, since Christmas Eve fell on a Wednesday which is my day off anyway. We'd both worked steadily at getting the house sorted out so that we wouldn't have to DO anything much - gold star to Steve who deep-cleaned the entire bathroom including the ceiling - so on Christmas Eve all I really had to do was press the button on the Roomba, which isn't taxing housework by anybody's standards. After dinner a friend came round bearing gifts and a card, and it felt very Christmassy indeed.

Christmas Day started with a glorious lie-in. At about 11am, Steve's mother came round, and then we started on the presents. My highlights were the set of KnitPicks Options interchangeable circular knitting needles, which I knew I was getting, and the iPod nano which I had no idea about. Both of those were from Steve. I think Steve's best present was the 1.5 kilos of jelly beans from one of his friends.

Christmas dinner consisted of sausages, cooked and served by Steve, with some roast potatoes with onion and bacon bits, mixed veggies, and gravy. Many people seem appalled by this, including Steve's workmates and my mother, but our logic was sound:

1) We wanted a meal we would enjoy. Steve knows he cooks sausages to perfection. However neither of us have ever attempted to cook a turkey, and my obvious limitations mean that even a regular roast dinner can be quite an adventure. So we opted for definitely-yummy sausages over a potentially disastrous attempt at Christmas Turkey Dinner With All The Trimmings.

2) We don't get much time off work together. There were better things for us to do with this precious four-day block than spend a day prepping, a day cooking, and two days washing-up.

3) Not to mention two weeks of leftovers.

4) If we happen to fancy a Turkey Dinner With All The Trimmings we can go to a carvery any week of the year and stack more (properly-cooked) grub on our plates than we can eat. We're in a fortunate position where it's not like Christmas dinner represents the one decent meal of the winter.

Plus, of course, by the time my mother phoned and expressed her horror at Sausages For Christmas Dinner, she hadn't even eaten yet, while at our house the dishes were done, the ice-cream was eaten, and Steve's mother was giving us both a run for our money on the Wii. So in the absence of the dedicated chef (mum's husband is not only an excellent cook, but actually enjoys doing it) I think our version was just fine.

I got a nap in while Steve and his mum went for a walk, and then she went home and we settled down for a nice relaxing evening.

Boxing Day was more of the same. A lie-in and a couple of hours pottering about the house playing with presents, followed by a leisurely jaunt into Warwick and a cream tea at a ye olde tea shoppe near the castle. Saturday was a lie-in, bacon sandwiches, and a trip out for some milk which turned into a couple of hours with friends at a slightly remote pub near Cubbington, complete with roaring log fire and dogs in the bar. Sunday's lie-in was followed by a trip to Kenilworth Castle, which was fun. It was also a lot more accessible than I thought it would be, so we'll have to go back in the summer when hopefully I'll be a bit more mobile again, and we can appreciate it without the pressing issue of freezing cold.

So, today is back to work day. Notable absence of lie-ins and weirdness of being in the house by myself all morning.

I don't want to post this, because posting this means my holiday is over... :(

Wednesday, December 17, 2008


If you were here at this time last year, you'll know that I love Christmas. Last year Steve and I went back to Lowestoft to see everyone for Christmas, which was nice, but this year we're staying at home instead. I'm really looking forward to it.

Of course it did mean that I needed something I haven't had for several years: a Christmas tree. Last year, well, there was going to be a tree at mum's house, and given that I had quite enough on my plate with getting suitcases packed, and gifts bought and wrapped, not to mention still settling in to living here and having just started a new job, getting a tree didn't seem like any kind of priority. In the years before that, I lived in my tiny little flat, so all there was room for was a tree-shaped ornament. But now... this is my home, I will be here all Christmas, I have room for a tree, and by the gods, a tree I shall have.

My quest for a tree didn't go according to plan (go ahead, look surprised). I'd figured on getting one from those esteemed purveyors of seasonal tat, Woolworths. No sooner had I vocalised this plan than Woolworths went under and the Final Clearance Sale started. By the time I'd got round to my day off, and gone into the local branch in search of a tree, the "Christmas" section consisted of a few folorn packs of baubles scattered on the otherwise barren shelves.

Time to formulate Plan B. I started by considering my specification. I definitely wanted an artificial tree rather than a real one. I wanted it to be bigger than a shelf-ornament (so I could hang decorations on it), but preferably no taller than me (so I could hang decorations on it). I wanted it green, without fake snow or glitter. I did not want a fibreoptic tree and, although I hadn't realised it was an option, I prefer my tree to be the conventional way up.

This is a taller order than you might first think...

I trundled along the rest of the high street but couldn't find any trees that fit my spec. We tried local supermarkets without success. On Saturday we went to Solihull and looked in John Lewis. They had a lovely Christmas section, but all the trees were far too big. There was one pre-lit tree which was just so pretty I could have forgiven it for being too big, but it was something like £175 and my budget was more in the £30 region.

But then, the skies parted and I was advised to look in Homebase or Focus (I'm unsure to what extent they are one and the same thing). So on Monday morning, Steve dropped me off at the retail park on his way to work, and I went into Focus, and I found their last 4ft artificial green right-way-up unlit unsnowy unglittery tree! And I was happy! So happy! The tree plus a dozen or so decorations remained well under my £30 budget, and I went home exuding joy from every pore.

Things have been a little hectic since then - work on Monday afternoon, work Christmas do on Monday evening, recovering on Tuesday morning, work on Tuesday afternoon, last knitting group of the year on Tuesday evening... however Wednesday is my day off, so I assembled and decorated my tree late on Tuesday night, after knitting. Here it is in all its glory:
me and my tree

I am so happy. There's presents underneath it now and everything.

Oh, and while we're at it with the Christmassy goodness, remember, just like last year, the final UK posting date for Christmas cards is Saturday 20th December. It'll take you ten minutes. Make someone happy.

Sunday, December 07, 2008

Welfare Reform

I'm sure many of the people who read this blog will have encountered the stories in the news about James Purnell's work for welfare plans. On the face of it, and to particular types of people (generally the ones who are well educated/spoken/connected/balanced/experienced/etc enough to have never had too much trouble getting a job) the plans seem quite reasonable - "severely disabled people" and single parents of babies under one will be supported, everyone else will have to work for their money. And let's face it, those are the people we want to help with our taxes. We've had quite enough of supporting entire workless families like the Malcolm family who fulfil every stereotype of a feckless wastrel benefit scrounger that you ever heard (seriously, whichever reporter dug that lot up deserves a bloody medal).

Why does it bother me anyway? I have a job. Well, it bothers me because I know how extremely lucky I am to have got into a position where I could look for work, let alone how fortunate I was to actually get a job. I know that all it takes is one factor to slip - Steve and I breaking up, a change in Access to Work criteria, the company I work for to collapse - and all of a sudden I will be back on the scrapheap, and in a jobs market which is terrifying compared to what it was a year ago. It also bothers me because I know too many people who are in similar positions to the one I was in before I moved in with Steve, who would like to be working and earning their own money but simply aren't in a position to manage it.

The first problem is this "severely disabled" idea. The criteria for this is incredibly stringent. The Benefits and Work website has a free Employment and Support Allowance (ESA) self-assessment test. I count as disabled, but not severely enough that my capacity for work-related activity would be considered "limited", which has surprised a couple of people who know me.

It's not just me though. Here's an example from the DWP's own guidance (pdf):

"Customer receiving DLA (middle rate care) and DLA(higher rate mobility). A person with severe rheumatoid arthritis affecting the hands and feet, limiting the ability to walk and needing some help to wash, dress, cut up food, and attend to toileting needs. The customer is living alone and nobody receives Carer’s Allowance for looking after him."

That is an example of someone who is NOT considered to have limited capability to undertake work-related activity.

They cannot walk, dress, wash, eat, or go to the loo unaided, but they are considered to be perfectly able to do full work-related activity. And they will face "sanctions" if they cannot manage it.

How on earth does that work?!?

The second problem is the idea of full-time work-related activity or community work. Regular readers will be aware that I recently had to bow out of a great interview for a job that I really wanted to do at a place where I really wanted to work, just because it was full time. I'd love to earn full-time wages but the unfortunate truth is that I cannot manage to do a full-time job AND keep on top of life's essentials such as showering and eating and so on - as we've covered before, I'm pretty stretched just working part-time.

These new plans, however, would have me "working" 9-5, and facing "sanctions" when I failed to manage it. Which brings us neatly on to the third issue, which is rates of pay.

Basic ESA is £60.50 per week, which is the same as Jobseeker's Allowance for a person over 25 years of age. Then there's £24 on top of it for participating in the Work-Related Activity. I understand this is the bit that gets withdrawn if you "refuse to co-operate" by, for example, being stubbornly too ill to leave the house on more than one morning.

I suspect there are very few people reading this who would consider working full time for £85 a week, but disabled people will have a choice between that and real heat-or-eat poverty. You see, there are two good reasons why Incapacity Benefit at the long-term rate is more than Jobseeker's Allowance. The first reason is that a disabled person generally has to cover more costs than an able-bodied person. DLA (supposedly) accounts for the additional personal-care-related and mobility-related costs, for instance Meals on Wheels and taxi fares, but there are also increases in general costs - things like having to do more laundry due to frequently spilling things, buying more trousers because they wear through at the knees as you crawl around your home, or having to have an internet connection because you do not have the capacity to get to and around the local shops nor the supermarket for your essential groceries. The second reason is that it generally takes longer for a disabled person to secure a job, during which time they will have more household expenses of the sort that the able-bodied person on short-term JSA could defer until they'd got a job. I'll explain. Even putting aside issues of access and discrimination at the interview stage... let's say that the odds of getting a job are one in a hundred, so if you apply for a hundred jobs you will get one of them. While an able-bodied person could, technically, apply for every job in the paper that they were qualified for and hit the hundred in a few weeks, a disabled person with the same level of qualifications will only be able to apply for the few jobs that also match their physical capabilities - it could take a year or more to find a hundred suitable jobs to apply for during which time the boiler will still need repairing and the wheelchair will need a service.

Even Reasonable Adjustments and Access to work can't make everything possible. A reminder of a post I made before I got my job:

"I still have certain limitations. The obvious physical symptoms of my illness rule out quite a lot of things, especially in terms of the usual easy-to-get minimum-wage flexible-hours jobs. I don't think I'm in any way 'above' cleaning toilets or serving fast-food or collecting trolleys from a supermarket carpark, but I would do such an ineffective job of those tasks that really, another person would have to be employed just to pick up my slack."

Which brings me to my final point. Even with the job that I do, which looked possible enough to make it worthwhile applying, it costs quite a bit of money to keep me in work. I need taxis to and from work. There are no other transport options available to me so the taxpayer contributes about £40 a week to my taxi fares (I pay the rest). I also have a special machine, a mechanical press, bought by the taxpayer as I cannot use the hand-press my co-worker uses. That was £500. Other people need different things - Lilwatchergirl needed a wheelchair, an office chair, an ergonomic keyboard and mouse, and a PDA; Lady Bracknell's Editor needed a laptop and "Secure Remote Access System" to enable her to work from home when necessary, plus however many man-hours were required to untangle the inevitable snarl-ups; various other people have required voice recognition software or Braille displays or even actual human assistants to help with certain parts of their work. That's before we even get started on the costs of things of uncertain merit like DEAs and Remploy. All things considered, I suspect there are more than a couple of us who cost more money "working" than they did claiming IB. How will the costs of enabling us to attend and accomplish "work-related activity" be met on top of paying full ESA?

I don't have all, or indeed any of the answers, but what I have heard so far about the reforms strikes me as badly-thought-out and more than a little scary.

Monday, December 01, 2008


This weekend, Steve and I have mostly been nest-building.

It started with someone giving us their old TV, and the unit it sat on. It was nothing spectacular but it was an improvement on what we had. This caused us to cast a critical eye over the rest of the lounge with a view to upgrading. The most important thing was sorting out the sofa - which is in fact a cheap sofa-bed that has been, um, well-used for almost a decade and was getting to be less than comfortable, to the extent where certain friends had taken to turning up at our house for an evening carrying their own cushions. Steve ordered a new futon mattress for it which we went to collect on Saturday.

The new mattress is a vast improvement. It's about six inches thick and is an actual multi-layered mattress rather than the previous cheap 'slab of foam' option. It looks a lot nicer too, being covered with clean black cotton rather than an slightly battered old duvet cover. But that was where we ran into a slight hiccup, namely that all of a sudden the seventeenth-hand pale floral-print cushions we'd inherited from who-knows-where, which were quite innocuous on the old duvet cover, suddenly looked very silly indeed.

And so we decided, three years into our relationship and one year into our cohabitation, that it was finally time to take that step and Go To Ikea.

It was never going to be easy. We started off badly, with Steve exuding his "I Do Not Want To Do This" vibes before we'd even left the house. In an effort to be considerate to him, I decided that rather than asking him to put my wheelchair into the car (his car isn't quite big enough for the chair unless we either fold down the back seats, or remove the parcel shelf and have the chair sticking up slightly obscuring the rear window), I would use one of the store's customer wheelchairs. This was not the master plan I had hoped it would be.

We arrived at the "Ikea Plaza" and instead of going into the dedicated Ikea multi-storey car park, Steve chose to park in the Plaza car park. I asked him to check whether the car park we were in had free parking for Blue Badge holders or whether we needed a ticket. Next thing I knew he was coming back to the car holding a one-hour ticket on the basis that he didn't have enough change for more than that. I do not know why he didn't ask me for change. I do not know why he thought that one hour would be enough to get around such an enormous shop. I do not know why he did not want to go into the multi-storey car park that offered free parking for people shopping in Ikea. However by this point the I Do Not Want To Do This vibe had become an almost visible aura so I kept my mouth shut.

There were no staff on the ground floor and precious few directions other than an instruction to start shopping on Level Six. Steve's stress and anger levels were by this point heating the air to a four-foot radius around him and small children were running away in fear. Nevertheless we found the wheelchairs, snared a staff member to check that it was okay for us to just grab one, and started shopping.

Or we tried to, anyway. Twenty metres in it was apparent what an incredibly bad idea this whole thing had been. The wheelchair was practically falling apart, with footplates which wanted to scrape on the floor and a tyre which was gradually shaving itself away against the arm-rest. I wanted to get out, turn around and go back to the car, but the little entry gates had closed behind us, and some display rooms containing many likely-looking cushions were enticingly ahead. We pressed on.

Quick guide to IKEA shopping: Do not bother with the catalogue while in the store, it'll only confuse matters. Treat the first level of the shop as a sort of three-dimensional catalogue. You see something you like, you pick it up, look at the tag, and make a note of its name, size, colour and whereabouts in the store the versions of it that aren't the display model can actually be found. Except that there are some things that you have to go find, and some things that you just pick up. Accept that you will have to travel several miles around the store in order to escape again.

We didn't know any of that. I was gazing at the information on the labels wondering what was important and what wasn't, and whether we really had to (a) write down the details for every cushion that I sort-of liked or (b) go round the store twice, once to look and once to get details written down. Trying to combine getting my head round the system plus a Steve increasingly close to explosion, plus an uncomfortable wheelchair which the NHS would have rejected, multiplied by having no option to abandon the whole escapade, drop everything and leave the shop, meant I was tense and stressed and aargh...

Nevertheless, there's some nice-looking stuff in Ikea, and it was definitely the right place to go, as before long we had found suitable cushions (three of a sort that you physically picked up then and there and two that you went to collect on a different floor) and also our If We Happen To See A Nice One Bonus Item of lap trays. But this was where the clash of shopping styles really took its toll.

The way Ikea want you to shop, is to meander around the store with a trolley or a bag, picking up interesting looking things as you hunt for the thing you are actually seeking. The store layout is such that in order to get to the exit a customer has to walk right around at least two levels of the store in a sort of repeating "S" pattern, with actual walls blocking the direct routes. In this way you are forced to walk past 17,000 products you don't want in the hope that you will impulse-buy at least one or two.

This clashes with the way Steve wants to shop, which is to locate the section for the specific item(s) he is there to buy, choose one, and make for the checkouts. Although that said, he is usually willing to take his time and allow me to browse through anything that catches my interest.

It also clashes with the way I want to shop. I'm all for meandering amongst interesting things and for this I am lucky in that I can walk or self-propel over very short distances. However, despite the provision of wheelchairs, there's no wheelchair-trolleys (or at least not that we could find). There are big yellow bags, for shoppers who are determined that they won't need a trolley, but no way of hanging these on the back of the chair. So when we found the three cushions that we were meant to pick up then and there, they ended up in a yellow bag on my lap with me peeking over the top. That in turn meant that I could not meander by self propelling, because my arms were occupied with the bag, and also that I could not periodically get out of the (uncomfortable) chair to meander with my stick, because my legs were pinned.

I was stuck in the chair, the chair was wherever Steve pushed it, and because of the aforementioned dodginess of the chair including self-shaving tyres, the chair was extremely difficult for Steve to push.

Add in the factor of the rapidly-running-out parking ticket, and now there's Steve all stressed because he's getting sore and tired and he's having to hike around this entire store so slowly when all he wants to do is pay and leave, I'm all stressed because I'm also sore and tired and I'm going so fast past this entire storeful of shiny and intriguing things that I want to investigate, and anyone who impeded us probably got stressed as they keeled over from the sheer force of Steve's Laser Death Stare With Muttered Cursing.

It was a relief to get out.

However. We did get out, so that's a win. We still love each other and although we were both a little snappy and stressed we didn't have the Ikea Row which I understand to be traditional. We went a little over our one-hour of parking, but we didn't get clamped or ticketed. And, more importantly, we accomplished cushions. Three black cottony ones which match the futon mattress, two massive flame-coloured red-orange soft felty ones which provide a lovely warm contrast, and two cushioned lap-trays suitable for laptops, books, writing or dinner.

(Oh, I also stole a pencil, but Steve says it doesn't count because I didn't mean to - I'd jammed it into my ponytail, which is my standard way of holding on to pens and pencils because they fall out from behind my ear, and then I'd forgotten about it.)

I am extremely comfortable now. But if there's a next time it will involve my own wheelchair, at least one more person, and at least two more hours. Oh, and I'll be frisking Steve for sharp implements and matches.

Sunday, November 23, 2008

It's that time of year

A little song about Santa.

First of all, a big thank you to all the people who left such supportive comments on my last, rather depressing, post. Judicious application of cups of tea, hugs from Steve, a Chinese takeaway, a DVD (Quick review: Colour of Magic, I liked it, David Jason does a cracking job as Rincewind but I can't help wondering what will happen if/when they do Mort, which requires Rincewind and Albert to simultaneously be in the same room), and a good night's sleep have seen me back onto an even keel.

Now for some good news: my laptop, my gorgeous shiny laptop, is resurrected.

Last weekend some sort of particularly nasty... thing... triggered and wriggled its pernicious little way all through my system. One of the specifically nasty features was that it blocked access to the sites for my anti-virus and my anti-adware/spyware updates. It did something to the way my computer accessed google as well, so that clicking any results links from a google search would take me instead to sites for more nasties. The computer would freeze and/or turn off completely and every reboot pushed the nastiness deeper into the system.

Steve did his best with it but it was bedded right in there. Eventually we took the decision to scrub the computer completely and start right over from a fresh install of Windows. After all, we had all the original disks and codes and whatnot, plus a backup of most of my files on an external drive. The backup wasn't perhaps as recent as it should have been, but I know all the important files from this year were on there - all I'd be missing would be a few pictures, half-finished blog posts, savegames and stuff.

And lo, for on the third day it rose again, and here I am, trying to get back into typing on a full-size keyboard (Quick review of eeePC: Handy. Functional. Light. Portable. Small. Very small. But bigger than a phone. On the whole I liked it. But, how can I say this... it's an ideal secondary computer) and desperately trying to remember my passwords for the sites on which I was logged in permanently. I've got most of them now, although I haven't done any shopping yet.

One slight hitch - you know how I was all relaxed because, hey, backups of most of my files on an external drive, nothing to worry about! Well it could help if I could find the aforementioned external drive. It's about the size of a cigarette packet and is somewhere in this house. I'm fairly certain it's not in the kitchen, toilet or bathroom. Unfortunately that's not helpful as this is a three-bedroomed house containing two geeks and therefore any amount of likely-looking wires, defunct remote controls, old mobile phones and various other oojamaflips which get your hopes up but turn out to be Not What You Were Looking For.

Other than that I really need to get on with my Christmas shopping. I think we've already passed the last guaranteed date for getting stuff shipped from the US to the UK before Christmas. I'm also now horribly aware that although within the UK, the last date for which the Post Office guarantees delivery of packages before Christmas is something like 20th December, that doesn't mean by extension that it's okay to order stuff on the 19th and expect it to arrive on time, as it has to be processed first. For our place, depending on factors like how many people we have working, how efficiently our deliveries arrive, and so on, we can process about 150 normal-sized orders in a day. If, on the 19th, we suddenly have 400 orders to process... well, we'll do our best, work overtime, draft in as many extra hands as we can fit in the room, but the room is of finite size and the day is of finite length, so it's likely some people will end up disappointed. Now is the time for online Christmas shopping if you want to be sure of getting the things you need without a panic.

Despite having no idea what to get anyone, I was all super-efficient and made sure people can have an idea of what to get me and a fuss-free way of getting it by making an Amazon wish list. But now I'm worrying that it was a little bit... off... when Mum said "so what sort of things are you after?" to respond by emailing an Amazon link - it feels like making demands. I did follow it up with a more personal email explaining that it's just some ideas and I don't care whether I get all/none/some of the stuff on the list. But even so I can't help thinking that a handwritten letter to Santa, referencing my intention of compliance with the "being good" clause for another year, with pictures cut out of assorted catalogues and stuck on with pritt stick to indicate the Things I Would Like Please, would have been more acceptable.

Actually that's another thing I'd like - a book of etiquette and household tips for such things as Making Christmas Lists As A Grown-up, Avoiding Being Healed At Dinner Parties, and Extracting Loved Ones From The Duvet On Cold Winter Mornings When They Have To Go To Work. I have Nanny Ogg's Cookbook which has much valuable insight, and VideoJug which offers a lot of practical help, but I still often feel like I'm floundering with things like this.

Friday, November 21, 2008

Interview Fail

I had my interview this morning. It was basically the job I'd interviewed for back in the summer, same interviewers and everything. It lasted about three minutes - a very good and positive three minutes, it must be said, although it mostly concerned the weather and how much nicer it had been on the previous occasion - before it became apparent that we were talking about a full-time position, 37 hours a week.

I cannot do 37 hours a week. I wish I could but there is no Reasonable Adjustment in the world that would make it possible.

I don't know what happened. I apply for all the part-time admin jobs on the website, but never the full-times because I know I can't do it. Maybe I misread or mis-clicked. Maybe they'd left a part-time designator on the title by mistake. Maybe it was a callback of candidates from the previous (part-time) post in the summer. Who knows. Upshot was, I'd got myself geared up and excited about things and suddenly I was in an interview for a job that I could not possibly manage.

If there is one thing I hate more than "not being able to do things that I want to do because of my disability", it is "having to admit to other people that I cannot do something."

As I explained to the interviewers that I would not be able to do a full-time job and apologised for having wasted their time, all the adrenalin and good-outcome visualisations that had me psyched up and positive and confident for the interview got snarled up in the crushing sensation of having to admit my inadequacies. God knows what my face must have looked like.

The interviewers were being really nice about it, and the nicer they were, the worse it got - I wanted to just shake hands and find a bolt-hole where I could cry for a minute and then recompose myself, but they could see I was disappointed and embarrassed and they were offering me a drink and asking if I was sure I would be okay to get home, because if I had a lift arranged they didn't mind me sticking around for a while, and did I want to call anyone...

Then I tried to stand up, fumbled my walking stick, it fell away from me and I tried to bend down but I couldn't, and one of the interviewers passed it to me, and I just felt smaller and smaller and smaller.

Scuttled into the loo on my way out, had my minute of crying before realising that on autopilot I'd gone into the disabled loo. It is one thing to tie up one of several available stalls in the ladies for a snivel, but quite another to tie up the only accessible toilet for a purpose other than the obvious. So I rushed a half-arsed job of calming myself down, didn't hang about to repair my makeup, and took the lift down to the foyer to call a cab. As I stepped out of the lift, there were the interviewers, coming down the stairs, taking advantage of the unexpected half-hour break, and there was me, blotchy of face and obviously far more upset than any sane person should be over a goddamn admin job. They were nice again, making sure I could call a cab and so on, and I did my best to brazen it out - oh well, hopefully you won't mind me coming back if there's another part-time job here and I haven't embarrassed myself too badly, ho ho ho - but there's only so much bluff a person can pull off when the world can see that the tears have only just stopped rolling, and while they said I absolutely should continue to apply for future part-time jobs, well, what else could they have said?

The problem isn't that I didn't get the job. The problem is that I didn't get the job because of factors beyond my control that I cannot find a way around. I do a pretty good job of convincing myself that despite my illness, I am doing okay at life, and with a few exceptions, I can do anything I put my mind to. The exceptions rankle though, and one of the biggest exceptions is my inability to consistently and reliably function at a high enough level to be able to hold down a full-time job.

Back home and with a cup of tea inside me, I know I probably should have continued with the interview, made them love me, and then tried to persuade them to drop the hours down, but I didn't have it in me.

The best thing about today so far is that last night I had the foresight to cast on for a sock to take with me and occupy myself while waiting for my post-interview cab. I would have gone nuts if I hadn't had something to do with my hands while waiting. Especially when the next person with "here for interview" tattoed on their forehead (ok, but) strolled into the foyer and took a seat to wait.

That'll teach me to get lulled into a false sense of security by life going smoothly.

My computer is unwell at the moment so I'm not online so much. Right now I'm using Steve's eeePC which is, well, it's okay but the screen and keyboard are tiny, it's not a main computer.

I'm back in my jeans and t-shirt now, feeling like a massive loser and really not ready to go and spend another afternoon of my life putting CDs in boxes. If I'm still doing that when I'm thirty then I want one of you to come and euthanise me, okay?

Thursday, November 13, 2008

Did you ever have a couple of days when things just went... right?

It started on Tuesday, worryingly enough with the laundry. Anyone without a tumble drier will understand where I'm coming from - I have enough space to hang up to dry all the clothes that I wash, but the things like towels and sheets cause a bit more of a problem unless you (1) don't care about your heating bill, (2) have the space and strength to wrangle with acres of heavy, damp cloth and (3) don't mind a climate inside your house that is similar in heat and humidity to a tropical rainforest.

So I decided that a graceful admission of defeat was called for, and looked into laundry services. I knew of service washes and I figured that although taxis to and from a laundrette would be expensive, it would get it done, one-off expense, and that would be that. So I made some phone calls.

Ten minutes later and an arrangement had been made for someone to come to the house after I'd got home from work, collect two black bin-liners full of laundry, and bring the contents back, clean and dry, at the same time the following day. Simplicity itself.

Off to work, where I had a busy and productive but thankfully not too awfully hectic afternoon. More and more Christmas-themed things are being ordered. At the end of the afternoon, I finished everything that wanted doing, made my way down the stairs, and reached the bottom just as my cab arrived to take me home.

At home I relaxed for half an hour, then a polite young man collected my laundry, then about ten minutes after that Steve got home, bearing fish and chips. Delicious. That consumed, it was time to go to knitting group for the rest of the evening, where I had a great time chatting with my friends and making steady progress with my current project (Christmas present, sorry). A couple of hours later Steve came to take me home and then I snuggled into bed with a heat pack and a good book. Hot chocolate was offered, but I didn't think I'd stay awake long enough to drink it.

You'd think it couldn't really get much better, and so I may have approached Wednesday with some trepidation. Wednesday, being my day off work, has a horrible tendency to become a Busy Day as I cram in all the stuff I haven't been able to do during the week (I'm home in the mornings, but I can't go out and get stuff done as I have to save my spoons to be able to go to work). This week was looking particularly harsh as it was going to entail a trip into town which is sometimes a real adventure. I braced myself and called Shopmobility to check availability of scooters (I didn't have the spoons to drive my own all the way into town and back) - no problem, a scooter will be ready and waiting. Called a taxi to take me into town, taxi was outside my front door within five minutes.

It was like falling through a door that you expect to be heavy and then someone on the other side opens it before you realise.

First task was to go to the post office to post a thank-you present to the charity which supported me with my DLA appeal. There was no queue, just straight to the desk and sorted.

Second task was to go to the building society to transfer the big lump of DLA back-pay (the money they should have paid me over the nine months leading up to the appeal) into my ISA. No problems whatsoever.

Third task was to go to Boots and fill my prescription. A fifteen minute wait was about normal, I sat and relaxed for some of it and got a bit more knitting done with the rest. The pharmacist was thoughtful enough to bring the bag over to where I was sitting rather than shouting to me, which was nice.

Finally, I had to go to a bank to set up a new account in order to use Direct Payments to hire a Personal Assistant for a few hours a week as per my Social Services assessment. It must be a new and separate bank account so that the payments are transparent.

To briefly explain: DLA is money I get in recognition of the fact that I have various additional expenses due to my disability. I get £46.75 a week for Mobility. But no one cares whether I use it all for taxis, or whether I use some of it to repay friends directly or indirectly for giving me lifts, or whether I count shopping delivery charges, or whether I blow it all on cat food. It's up to me how I spend it - or indeed if I save it. Direct Payments, however, is more like reimbursement of a Personal Assistant's wages. So I will hire my Personal Assistant and I will pay them, and Social Services will give me the money to pay them. However, all of this money must be directly accounted for. If I've been granted 10 hours of care, but I only use a PA for 5 hours, then I will only get the payments to cover 5 hours of care. So there has to be a dedicated bank account for these payments to make sure everyone involved can easily keep track of what money should be and is going in and out at any given time.

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...

Anyway, it's a task I've been sitting on for a couple of months now, waiting for a day when I had enough spoons AND enough time AND during bank opening times, to be able to try and tackle it by myself. I admit, I was also a little anxious about whether a bank would let me open an account when I don't have a driver's licence or a passport, and I can't say how much money will be going in and out of the account, or when.

But today, ah, today I was charmed... I picked a bank on the basis of "first one I saw", mosied in, explained I wanted to open an account and was told someone would be with me shortly. Shortly enough, someone was with me, ushering me into a private room and offering me a hot drink. Opening an account? No problem! Your wages won't go into it? No problem! Chequebook, no fees, no problem! No passport or driver's licence? Well, I'm sure something in this sheaf of documentation you've brought along will suffice... WIN.

It got better. Steve came to meet me for ten minutes in his lunch break, which meant that not only did I get extra bonus hugs, but I also got to offload the enormous bag of medication which was starting to get in my way. I found a quiet restaurant with a decent lunch offer (a main course and a drink for £8.50) so I decided to treat myself. Then I started to make my way back to Shopmobility via a couple of shops and found (1) a nice top and (2) a book from a series I'm collecting which was reduced from £6.99 to 50p because the cover had got slightly torn. Dropped off the scooter and made my way to a nearby bakery where I had a cup of tea and a chocolate fudge brownie while waiting for a taxi to pick me up and take me home.

But we're not through yet! There was post waiting for me at home - I've been invited to another interview, which is nice, although I know better than to hold my breath. They want my permission to contact my current employer for a reference, which is fine, but I really should give my current boss a heads-up first.

And finally, to round it all off, the guy from the laundry brought back two big bags of nice, clean, dry, folded towels and bedclothes, and that was when I discovered that the price he'd quoted me wasn't per-bag but for the whole lot, so it only cost me half of what I was expecting! The amount of pain and hassle it saved me is phenomenal, so I expect I will be using that service a lot more in the future.

More days like this, please.

Thursday, November 06, 2008

Back home and having trouble getting started again

knitting and beach
Originally uploaded by girl_of_bats
I've been home for a while now. The week of holiday was very badly needed. I saw friends and went places and had some time off from the usual daily grind. Pip insisted that I did no housework of any kind - he even made my breakfast toast - and although it was sometimes confusing in the mornings trying to cope with the noise of kids TV and sort-of-talking Boy and attempting to figure out the plan for the day ahead, it was definitely a good break.

This picture of knitting at the beach is for Carie as per the comments on my last post. To Mandy, I can only apologise for the lack of pretty shells - walking on sand for more than a couple of metres is pretty well beyond my capabilities and as you can see, the tide was right out. In my defence, I did bring home Tacky Seaside Fudge for the knitting group. I looked for sticks of rock but it's not in season.

This picture was taken shortly after the following conversation with the Boy, who had been being Very Good for the whole morning getting-up getting-dressed having-breakfast routine:
"You're being a very good boy! What do you want to do today?"
"Eat crispies."
"No, we only just had breakfast, so no crisps. Do you want to stay in, or go out?"
"Stay in."
"Okay... so what would you like to do while we stay in? We could play with your trains, or do your jigsaw..."
"Stay in, eat crispies."
"No, we're not having crisps now. On that understanding, do you want to stay in, or go out?"
"Go out."
"Okay, where shall we go? Shall we go to the park, or to Adventure Island...?"
"Go out, eat crispies."

Unfortunately I came home to discover Steve had been having one of "those" weeks, which meant that the third of a loaf of bread that had been in the cupboard when I left, was still there and enthusiastically waving at me when I got back. Likewise the washing up, the bin, and the bathroom. On the sort-of-plus side, the washing up hadn't really been added to in any significant way as in my absence Steve hadn't been eating properly. While it's true that in some ways that's better than getting back to a house with an extra week's dirty dishes piled up, I'm still having trouble seeing it as an altogether good thing.

Hopefully I'll know better than to go off on holiday again. If I do, I will endeavour to remember (and regular readers should feel free to remind me) that I need to take a couple of extra days off beforehand to make sure the house is in a fit state to leave. I'm not exactly houseproud, the only things I want to be able to eat off are plates and the only things I need to see my face in is the mirror. But there's a dividing line between "liveable mess" and "biohazard" and while I can live with grubby rather than gleaming white surfaces, it's gone too far when they start to turn green.

I've got a lot of it sorted out, but for the time being, and what with the additional demands of work (the volume of orders is steadily increasing, Christmas I think) and the setbacks caused by the colder weather (snow is lovely but causes a sharp increase in my joint pain and a reduction in my endurance) I still feel like I'm playing catch-up and like I may never get on top of everything.

Monday, October 20, 2008


So, this is my first proper holiday from work - a full week rather than the odd day. I'm in Lowestoft, staying with Pip and The Boy. Steve can't take time off work at the moment, and Pip no longer has a car, so the biggest problem has been sorting out the logistics of getting me about, not just to and from Lowestoft but also around places while I'm here.

The first plan was to hire a car for Pip, so that he and Steve could both drive towards each other and hand me over at the halfway point. This way neither of them would be spending the whole day driving. But Steve found that the company he wanted to use wouldn't allow Pip to pick up a car that he wasn't paying for, and furthermore, this payment would have to be by a credit card on which he was named.

Unsurprisingly, as a single parent Pip doesn't have the means to pay for a week's hire of a car. The only possible solution that company had was that Steve should drive me all the way to Lowestoft, hire the car himself, have Pip named as an additional insured driver, and then drive all the way back, causing a marvellous amount of additional expense and inconvenience for Steve's weekend. By this point I think Steve was about at the end of his rope so he agreed to collect the car in person on Saturday, at "about lunchtime, depending on traffic" as he would be driving all the way from Warwickshire.

As such, on Saturday morning we got up at a weekday kind of time and got to Pip's at about 1.30. We brought my stuff in from Steve's car and phoned the car hire place to check things...

... and the call rolled to a diverted number. The person who picked up - apparently nothing to do with the car hire place - told us that the car hire place had closed at 12noon. Just like they had done every Saturday for the last fifteen years. For some reason, this hadn't seemed like a relevant point to raise for the person who agreed we could pick up a car at lunchtime.

We started hunting for alternatives, but it seems that every car hire place that isn't based at an airport closes at lunch on Saturday and does not reopen until Monday morning.

Alternative plan: since the Boy spends Saturdays with his mother, we spent Saturday afternoon relaxing. We all went for a coffee with friends, and then Steve drove back home. Pip and I intend to try and hire a car between the two of us on Monday morning.

It has been really nice to be able to just relax and chatter with Pip.

Day Two

This morning we went out to get a booster seat for the Boy to use in the car, and then to the park where we fed the ducks. This was more complicated than it might sound at first, when you consider it was me in a wheelchair and the Boy on his new bike. Pip definitely got a good workout.

This afternoon we've been rediscovering Sonic the Hedgehog. I lose to a four-year-old. It's mildly distressing, but testament to intuitive gaming controls. Still, I'm managing a good line in getting him past a section when he gets "stuck" which is nice.

Mostly though, I've been taking the opportunity to rest, which was the whole point of the holiday. The Boy had difficulty believing that all I was doing upstairs was having naps, he felt sure there must be something more interesting going on.

Day Three

Okay... I've recovered from getting here and had a good night's sleep. I've made plans to get fed at my mum's and also to get together with several friends, which should be good. The Boy has got used to me being here again and everything is going smoothly.

Plus, Pip and I successfully managed to hire a car. First thing this morning I called Lowestoft Car Hire and arranged to pick up a car from them at about 10am. They were perfectly happy for me to pay and Pip to drive, in fact they seemed quite surprised I was asking whether that was okay. We were really impressed by their customer service. The taxi to take us to their unit arrived here at 9.45, we got there, we were offered several choices, we chose one, did the paperwork, paid, got "shown around" the car, and were driving away by 10.10. That's a LOT more like it.

On with the holiday!

Wednesday, October 15, 2008

Remploy and MPs

Finally, a response regarding the Remploy problems. My MP referred the matter to Anne McGuire, the erstwhile Minister for Disabled People. The response consists of a letter from Anne McGuire to my MP regarding the matter (dated approximately two weeks before she was replaced by Jonathan Shaw), and a covering letter from my MP, as it went via his office.

As you'll see from that article, whilst in office Ms McGuire was all about welfare-to-work. And my MP is James Plaskitt, the Benefit Fraud Minister. Surely if anyone should be up in arms about a company like Remploy skewing the stats for disabled people entering employment, it's these two.

Oh dear. While I like having faith in humanity, and believe that people as individuals are generally good, fair, and basically nice, I really must stop being so naive as to extend this to politicians.

According to my MP, "It appears that there has been a genuine and unfortunate error in the handling of your case, for which Remploy and the Government offer their sincere apologies."

Not fifty quid, then. Nor any thanks for my honesty in not taking the money and running, or for alerting them to the problems. And I wonder, Mr Plaskitt, if you uncovered a Benefit Fraudster on the claimant side rather than the government side, would you let them off with "apologies"?

No. Even if a benefit claimant made a "genuine and unfortunate error", they'd be hounded through the courts and at the very least, be required to pay back the funds which they had received on the basis of the erroneous information.

The letter from Ms McGuire was a little more illuminating. Sort of. I'm not going to reproduce any of it here as it's full of management gibberish and unashamed weasel-speak, but ten years as a fan of Dilbert has enabled me to boil it down and so I present the basic content in English.

1. Contacting me: Oops.

2. Only sending the signature pages: Oops.

3. Wrong dates: Oops.

4. Telephone call: Oops.

It seems Remploy contacted a whole list of clients to try and get them onto the Workstep programme. The list contained the details of 16 people, myself included, who should not have been on the list. No one noticed until I spoke up. The other 15 are being 'reviewed'.

For each point there's a lot of meaningless flannel about "ongoing continuous improvement programme" and references to undefined "additional measures" which will be put in place. Oops is about the size of it, though.

As for the '£50 for returning some forms' business: apparently £50 is considered a perfectly reasonable "incentive" for people to return information. Neither Remploy, nor the DWP, nor the wider government see anything dodgy about that at all. My apologies to Wat Tyler and Dr Crippen.

Wednesday, October 08, 2008

DLA Appeal

Appeal was today. It went well.

It was a bit daunting, but the panel made an effort to put me at my ease, asked sensible questions, and paid attention to my answers. I was able to answer all of the questions that were put to me, clearly and consistently. I also introduced the panel to Spoon Theory.

I got awarded High Rate Mobility and Low Rate Care, which is about right. We had thought I might get Middle Rate Care, but frankly I'm not going to argue about it. The award is backdated to February 2008 (which was when I applied) and is for two years from that date, until February 2010.

Absolutely knackered now.

Friday, October 03, 2008

The Wibble

My Disability Living Allowance (DLA) appeal is next week.

In an organisational sense, I'm well prepared for it. Steve has managed to get a day off work in order to take me to and from the building where the appeal is being held. A person from the local Welfare Rights Advice Service is going to be there to represent me. The evidence I submitted is pretty substantial. I've reserved an accessible parking space at the venue, I've even decided roughly what I'm going to wear.

In a more personal sense, I'm not doing so badly either. I mean, I know my claim is genuine. I know that everything I have said on my forms is accurate. The absolute worst possible case scenario is that they turn me down and I have to continue living on exactly the same amount of money I am living on at the moment. Okay, it's not ideal, as it means I'm dependent on Steve's goodwill to continue to make up the shortfall between my wages and "survival" due to my disability-related expenses (which is what DLA is meant to cover and is why it is not means-tested), but at least I'm not currently likely to end up in a situation where I can't afford to eat because of benefit difficulties. This DLA appeal is not the end of the world.

But then there's the wibble. You know. The bit in each and every one of us that nags away at confidence, that says your date will be put off by that horrendous spot on your nose, or that reminds you in the night of that stupid thing you said at the interview...

The wibble, for me, is bypassing everything I academically know and understand about models of disability, everything I believe about how I am a useful member of society, doing a job, paying tax, helping and supporting my friends and loved ones and generally being just fine as a person. To prepare for the appeal I have to spend a lot of time concentrating on all the things I can't do, and this feeds the wibble.

The Wibble says to me,
"You're useless, you can't even walk around the block or work full-time or manage this or that or the other on your own.

If you win, well done! You've proved that you're useless! What a thing to prove! Wow, I bet you're proud.

But if you lose, you're still useless, in fact you're so useless, you've failed to prove you're useless! And you're going to have to carry on struggling without financial support to cover the additional expenses caused by your inability to do things..."

Yeah, I know, emo crap, call the waaaahmbulance, etc. I'm just stressed out to hell and can't wait for this to just be over, one way or the other.

Tuesday, September 23, 2008

St Ebeneezer II

A few generic requests and pointers for online shoppers, on behalf of all those dispatchers out there who remember last Christmas and are fearing this one.

Part Two: Costs and Charges.

The postage and packaging charge

The cost of postage is set by Royal Mail (more on Royal Mail another day) and varies according to the exact size, shape and weight of your package. The pricing structure is complex to say the least, so many shops charge a flat rate for P&P, or link it to the value of the order, to keep things simple. This means that yes, one or two people pay a few pence more than the exact cost of their package, and others pay a few pence less. A few pence either way is all it will be. This is not rampant profiteering. Do not write angry letters of complaint because you paid 15p more P&P than Royal Mail charged.

There's also a clue in the name of the charge. Postage and packaging. We recycle where possible, but stock which arrives in no more than a dozen large boxes, goes out in hundreds of small boxes, envelopes, corrugated wrap, etc. Then there's things like bubble-wrap, sellotape, parcel tape, 'Documents Enclosed' packets, 'Do Not Bend' stickers, replacing worn-out tape dispensers, all sorts of silly things. Where I am, it averages out at around 25p per package.

You could argue a case for the dispatcher's wages to be part of P&P, too. I'm not part of the regular shop staff, I'm employed solely for postage and packaging purposes. It's a low-waged job role, but it's still about 10p per minute. So even if it only takes me two minutes to wrap up and sort out postage for one package, that's still 20p extra per package over and above the regular shop staff overhead.

Basically if your P&P is within £1 of the Royal Mail postage charge, you are not being ripped off.

Customs Charges

We are obliged to put Customs stickers on every package we send to a non-EU country. We are obliged to fill them in accurately. It's not that we don't like you. We just don't want to be investigated and shut down for dodgy business practices. The money you pay for Customs does not come to us, it does not increase our profit at all. We are not squeezing it out of you. It is not our choice. It is also not a new thing. If you are old enough to have a credit card and order things online then you are old enough to understand the basics of VAT and import/export. In most cases, if you get charged for Customs and look carefully at your receipt you will see that you have not been charged VAT. That's why you have to pay the customs charge.

Dodging VAT

Some people try to dodge VAT by using the following address:
Mr Very English Name
27 Very English Street
Well-Known English Town
Definitely an English County
English Postcode
Country Outside The EU That Doesn't Get Charged VAT.

Well done. The website has deducted the VAT, you are paying a quid or so less for your goods, although you're also paying a quid or so more for your postage and packing charges, so you're probably not saving much money. However, your credit card has been flagged - country not matched - so if you do it too often, someone will probably start to take an interest. It's not worth it to save 50p. Oh, and everyone is laughing at you for being so cheap.

We are not trying to rip you off.

We've been in business for quite a while. We want to stay in business. Ripping customers off is not a viable long-term business plan. Well, except for companies selling an absolutely essential commodity like water or fuel, where the consumer has little choice but to hand over whatever is demanded. But we don't sell that kind of product and we're not that kind of company. We want you to choose to shop with us, and part of that is not upsetting you by 'inventing' charges or charging an unreasonable rate. Certainly we want your money, but there's no need to assume we'll invent reasons to swipe it.

Short commercial break: Today it's for Sweet As, who not only do incredible bespoke chocolate cakes for special occasions, but also do mail-order chocolate brownies - including a gluten-free version if you like - in a package that fits through a letterbox. I had some of these brownies for my birthday. They are perhaps a little bit expensive but Worth. Every. Penny.

Part One: Placing Your Order.
Still to come: Royal Mail, and Other Issues.

Sunday, September 07, 2008

St Ebeneezer

As the esteemed blogger Scaryduck (I am not worthy, etc) recently observed, St Ebeneezer's Day - "the first day that Christmas displays appear in shops and public houses" - has well and truly occurred.

Speaking from the trenches of mail-order dispatch of classical music, I can confirm that the rush has started. The volume of orders is increasing, and the orders being placed have more than a sprinkling of titles like "Concertos and Cantatas for Christmas", not to mention Bach's Christmas Oratorio (available on CD, SACD and DVD from just about any record label you care to name).

I'm guessing that quite a few of the people who read this blog are likely to do at least part of their shopping online, so I figured it wouldn't hurt to make a few generic requests and give a few pointers, on behalf of all those dispatchers for small businesses out there who remember last Christmas and are fearing this one.

... actually, thinking about it, this may work better as a series. Other readers on the frontline should feel free to make additions in the comments.

So onwards, with Part One - Placing Your Order.

Fill out the form properly.

It's not really a difficult form. Put your postcode in the postcode box and your address in the address boxes. If you don't know your address and postcode, go and ask a responsible adult.

For each new line, use a new line of the address box - don't just type in twenty spaces, or half a dozen full stops. You can click in each box, or you can use the TAB key to scroll through them. While you're at it, why not let the shift key enter your life? It's not just there to make the keyboard look nice.

"As Above" is not an address. Nor is "as previous order," as I can't actually see your previous orders unless I stop everything and start rootling around in the database. And please, for pity's sake, don't think you're being clever by asterisking out the first few letters of each line of your name and address "for security". We need your proper address in order to send you the things you have ordered. The postman will not take packages to "** ***ley Road", okay?

You should also know that it's not "the computer" that fixes these things so that you get your goods. It's me, putting my Stalker hat on with the help of Google in a way that would probably have you feeling quite uncomfortable if you knew about it. You may also like to remember that all the time I spend correcting your address, I'm not shipping orders - you're holding up the queue!

Contact details

We're not asking for the fun of it, nor are we likely to sell your data. If we've said that we won't pass your details on, then we really won't. It's one of those big business/small business things. A big business is only ever about the money. A small business, on the other hand, is personal, and all of its employees are going to be trying to provide the sort of service we would like to recieve from others. So we won't pass your phone number to other companies owned by the same multinational conglomerate, or "relevant third parties", and we won't flood your inbox with spam. We're asking for fast contact details because if there's a problem with your order, we'd prefer to be able to let you know as soon as possible, and give you a chance to change your order, rather than waiting for you to contact us several weeks later because your goods have not arrived.

Your credit card 'security code' is NOT your PIN.

Your security code is the last three digits of the little number on the back of your card, where you put your signature. It's not a difficult thing to find. You never type your PIN online. If you type in your PIN where you should have put your security code, all that happens is that your credit card gets flagged - security code not matched - and you may have to wait longer while we check to find out whether you're (a) incapable of reading simple instructions or (b) a fraudster trying to use a dodgy credit card, and let's be honest, neither of those are good really, are they?

Reasonable Requests

Most small businesses will do their best to meet any requests you make, it's part of what makes us different to Amazon and Tesco. Perhaps something is a gift and you want to be sure it's sent to the recipient without the price on it - no problem. Maybe you are on holiday and want to delay posting to make sure your package won't arrive while you're away - easy. Maybe you want your order shipped in as many lots as it takes to make sure that each parcel is no bigger than the pannier on your bike - we can do that. But please, please, let us know early on. Preferably before you place your order. If we know your requests before the order comes in, then we can do our best to meet them. We won't be able to get the package back off the Post Office if you only put in your request after the order is dispatched.

Still to come: Costs and charges, Royal Mail, and Other Issues.

And now, by request of a friend of mine, a short commercial break for a friendly online mail order business. Adults only, I cannot stress this strongly enough, adults only may wish to look at Temptations for all their adult toy needs. Temptations is run by a couple of entrepreneurs with a long-standing interest in adult toys, aiming to provide the sort of service levels they would prefer to recieve when shopping online for such items. Please don't click that link if you're under 16 or easily offended.

Under-16s, and those who are not in the market for the kind of wares Temptations stock, may prefer to visit the 100% family-friendly appropriate-for-everyone Web Of Wool to spend their money.

Edit 20:17 07/09/08 broken link fixed.

Wednesday, September 03, 2008

We Apologise For The Break In Transmission

Wow, no blogposts for a month. Not quite sure how that happened. My apologies to anyone who got concerned. I am okay.

On with the excuses, well, I had a week or so at the beginning of August where I couldn't seem to phrase anything right. After that, I kept telling myself I would blog later, which never came.

Two things are notable for having NOT occurred. First, I still haven't heard anything more on the Remploy problems. They were going to investigate it internally, but then my MP stepped in via the Department of Work and Pensions (DWP) and now contact is supposed to flow via the MP and the DWP. Which it isn't. In mitigation, my MP is the "anti-fraud" minister (see "we are determined to catch those taking money that does not belong to them") which probably makes it difficult to suddenly reverse mindset to a non-claimant whose problem is that they are being offered and declining to accept money.

Second, I haven't organised that proper week away at the coast and I'm no longer convinced that I want to. There seems to be an awful lot going on at the moment and I get the strong impression that my presence would only exacerbate matters.

However, I HAVE been doing lots of things.

I've applied to Social Services for help and they have done really well - preliminary assessment over the phone same-day, a home visit from a social worker to do a full assessment the following week, a home visit for a financial assessment the week after that, then it was a home visit from somebody from the Rowan Organisation to talk me through the options for Direct Payments and whatnot, and finally a visit for assessment by an Occupational Therapist.

This level and speed of response would be pretty good even if they'd just turned around and said "no, you're not eligible for any help, care, equipment or services, and even if you were, you'd have to pay the full cost." But amazingly, and despite all the horror stories I've heard from both service users and providers, they've really come through.

The social worker has assessed me as needing 7 hours of personal care and 3 hours of social care per week. The financial assessment means this will be funded by social services. The Rowan will help me use Direct Payments to hire a PA to help me. They will help me find a suitable Personal Assistant (PA), do criminal records checks, assist me with holding interviews, and help with the paperwork (eg taxes and NI for my PA). It's all ready to go and there is just one problem - while Steve agrees with the idea of me getting the help I need, faced with the reality of it he found that he has difficulty with the idea of someone coming into his house. I don't have the balls to just go ahead with it without his consent but hopefully we'll work something out soon, as it's really quite upsetting to be struggling and going without while knowing that I don't have to.

The social worker also said we could have an emergency plan, in case Steve is hospitalised or has a family emergency or something. The "In Your Place" scheme means that if something like that happened, a temporary carer would be sent to the house to stay with me and fulfil Steve's role - not just the active personal/social care things, but also supervision, and doing the things that I can't do but am assessed as not needing help with because I live with someone who can be reasonably expected to do them, like cooking or going to the supermarket or changing the sheets on the bed (the idea is that these things aren't "care" as he would have to do them anyway if he lived alone). The temporary carer would stay with me for up to 72 hours, until either Steve was back at home, or a longer-term solution could be put in place.

The Occupational Therapist has done well for me too. A lot of the simpler bits and bobs I need, Steve or I have already purchased, but she's got me things like a swivel bath seat that helps me get into the tub safely to have my shower. She'll come back for another visit next month to see how I'm getting on and think about what else I might need. Most of the things she wanted to prescribe, I can't have, because it's a privately rented house and the landlord might object to permanent objects like grab rails and level access and a stairlift being installed. But, she's writing down officially that she thinks I should have them, which might help with the DLA appeal and will be a head-start if we ever get our own place.

On a different level, I applied for an admin job. I made it to interview entirely on merit (I made it clear that I was NOT applying under the "two ticks" scheme) and from there got onto the shortlist, but didn't get the job in the end. I'm a bit disappointed. It would have been nice, it would have suited my skills more, and I'm keen to get out from where I am at the moment. However, my current job isn't unbearable, and it's not like there'll never be another part-time admin job advertised ever again. The feedback was positive but not in a vastly useful way - apparently my application, qualifications, experience and interview was all fine, there wasn't anything that they felt I should improve upon, and I'm the second choice, so they'll call me if the first choice passes it up or can't provide references.

Of course they might have just said all that to make me feel better. Who knows. For now, it suits me to take it at face value and think yes, I was good, someone else was better, never mind.

We went to the wedding as planned, which was a total success in every sense. We caught up with a few familiar faces from the darker corners of the internet, as well as meeting a few new ones, and had an absolutely lovely time. The weather behaved itself, so the ceremony took place with gorgeous sunlight shining through the windows and making the bride look even more beautiful. It was very relaxed, and everybody was happy. Technically I caught the bouquet, but we should probably bear in mind that I was the only one trying and it was tossed directly to me from a distance of about two feet, very theatrically, for Steve's benefit. Steve, for his part, pointedly ignored the whole thing. Bah.

I got to see Pip and the Littlun, who is now The Boy as he is more than waist-high. I can't believe how much he's grown! He'll be four soon. We played with his trains and read a story, and spent a lot of time doing a sort of counting/sorting game of his own invention with little ludo pieces. Seeing Pip was good. I have missed him an awful lot since moving away. We really could have done with an hour to chat like grownups, maybe next time.

There's been other stuff too - going places, seeing people. I can't remember it all and this post already has too much variety in it. It was a good summer. Hopefully there is still a little bit more to come.

Wednesday, July 30, 2008


This is definitely summer. It is scorching hot out there. I have never missed the sea breeze so much.

Going to get a little bit of sea breeze when Steve and I head for the coast at the end of August for Jiva and Munkt0n's wedding. We're really looking forward to that, with extra added squee because the first time we met in real life was when we went to their engagement bash.

That'll just be a weekender though, as Steve can't book any time off work at present. But, Pip and I have been looking into the idea of car hire (Pip took his car off the road after I left town) to enable me to have a proper week's holiday and see everyone. The idea is that Steve could take me part of the way, and hand me and my suitcase over to Pip at a halfway services station. We're thinking probably September would be best, once the kids are back at school. Littlun will be doing half-days, so we'll be able to Do Stuff for half a day without all the local facilities being overrun by Bigger Kids, and then I can rest properly while he's at school.

Until I get some seafront, though, my life has been made that bit more comfortable by work having invested in an air-conditioning unit. The room was getting really quite unbearably hot, what with the combination of (1) thousands of CD cases, flat-pack corrugated cardboard boxes, and other packing materials, also known as insulation; (2) a single barred window which only opens a few inches; (3) a computer on the go the whole time; and (4) up to three adults constantly moving around the room doing work which, while it could not be described as physically demanding, works up considerably more of a sweat than sitting around typing. I don't care that my carbon footprint probably makes the baby Jesus cry. It was getting hard to breathe in there!

And now, I think, I will get my eye-mask out of the fridge, and go upstairs to lie very very still in the hope that sleep will come.

Sunday, July 20, 2008

Things are going well

It's been a great week.

First of all, those persistent Unbloggables that have been filling up large parts of my headspace are now mostly resolved, and I wish I could explain better, but it's Someone Else's Business really.

Secondly, Steve's been paid, and while we're not buying a house/going on holiday/planning a wedding/bathing in Cristal just yet, the light at the end of the tunnel has proved to be sunshine rather than the oncoming train we feared. We have finally been able to make some headway on long-overdue essential expenses as well as a couple of little treats.

So thirdly, I finally have the Panda Silk I have been lusting after since Christmas. I wasn't going to get it yet - at £6.45 per 50g ball it's expensive and technically there are more important things we should be spending money on - but Steve knew I was after it, so when he knew he'd been paid, he got on the phone to Anna at Web of Wool and arranged with her that he would pay for four balls of Panda Silk, for me to choose the colours I wanted when I came in for knitting group. And lo, for Mary did SQUEEE quite a lot before choosing two balls of blue-ey "denim tones" which I think will become socks, and two balls of green-ey "fern tones" which might become a shawl - I'm feeling brave enough to make a careful attempt at lace knitting and I've found an allegedly simple pattern.

Fourthly, and still in the knitting theme, I have finished the knitting for my jumper. I plan to start sewing it up as soon as I've been able to run Bloop around a bit, which I can't do just yet because it's still a bit antisocially early for a Sunday morning.

Fifthly, although you just know I'm going to lose count soon... Remember Georgette the Courgette? Well, she grew and grew and grew some more until she was festooned with very definitely identifiable yellow courgette fruits. And at this point things went runny, because although 101 people have offered 101 recipes for courgette, my kitchen skills for things like safely peeling and chopping and dealing with hot pans and so on are HIGHLY limited, and Steve is suspicious of vegetables in general, and in particular, vegetables that don't even have the courtesy to be green (tomatoes are apparently excused on the basis of being a core component of ketchup).

Not wanting the courgettes to go to waste, I asked our next-door neighbour if she wanted them and invited her to help herself at any time. She seemed very pleased about this, and I was happy too because I like it when I feel like I live in a community, next thing I knew, she offered to put some into a lasagne for us! Which she did, and Steve and I ate it last night with some nice ciabatta bread, and it was delicious and we ate every bit.


Nextly, I've had the paperwork for my DLA appeal through. This means I've seen the GP's report (short but supportive) and feel confident that yes, the DWP have ignored vast chunks of evidence and the appeal has a good chance.

There is a slight question-mark over getting to the appeal though. It's in a large building (too large for walking, I'd need to be pushed in the wheelchair) in Birmingham (which is too far away for a taxi and community transport has to be pre-booked which wouldn't work for the way home as I don't know how long it will take). I'm not sure, but I really doubt that my representative from the Welfare Rights place is also going to be able to drive me there and back, not to mention sit with me, push the wheelchair, and be a shoulder to cry on if it all goes horribly wrong. Even if she could, it's not her job. Steve should be able to take me and if he can, it's all good, but we have this horror that he might not be able to - you only get 14 days notice of the Appeal date which might not be enough for him to get a day off work - and we don't know if we could find anyone else to help. So on Monday I'm calling the Welfare Rights organisation to see if they have any ideas. They must have experienced this before. Still, at least that'll be an end of it one way or another. Which is a Good Thing.

And Finally, it looks like we might be getting some help from Social Services. No word yet on what you might call Daily help, but apparently as Steve is my sole carer, we're eligible for an emergency scheme whereby if he's suddenly hospitalised or something, an emergency carer will come and "live-in" with me to fulfil his role for up to 72 hours until something more sustainable, such as a short stay in a residential home or additional visiting care, can be arranged. Certain amount of paperwork, but isn't there always.

Tuesday, July 08, 2008

Bloggers 1, MP 0

Two weeks on from the latest episode of the Remploy saga. Several thousand people have read that post, mostly thanks to links from prominent bloggers including Wat Tyler and NHS Blog Doctor.

As well as writing about the issue on my blog, I contacted my MP via the incredibly useful and informative They Work For You website. And the ball rolled...

The result of writing to my MP so far has been a pale yellow letter which arrived this morning, three lines thanking me for my correspondence and telling me that the matter is being raised with a "ministerial colleague" at DWP.

The result of blogging, however... the "Quality Matters" team at Remploy have seen my blog. They then did enough detective work to find my email address (not difficult given the amount of information they hold about me, but slightly more complicated than just clicking an 'email me' link) and sent me a nice email telling me that they are taking it seriously and starting an investigation. The investigation will be led by "a senior manager" from outside the department with whom the issues originated. They've given a timescale and provided me with a Service Level Agreement. They also replied immediately to my request that I be contacted by letter or email rather than by telephone. Even despite my usually high levels of cynicism, I'm feeling quite hopeful that the issue will be noted and taken seriously and maybe even avoided in future.

I also found out this morning that my MP is actually (sort of) connected to the DWP. He's one of the MPs who appears in this BBC News story which does a sterling job of confusing suspected or "potential" fraud, and overpayments due to cockups by the DWP, with actual Criminal Benefit Fraud as wilfully and successfully perpetrated by Very Bad People. Sigh.

Thursday, June 26, 2008

The Top Seekrit Project

Finished hairband
Originally uploaded by girl_of_bats
It being several days since the recipient of the Top Seekrit Project recipificated it, I can now reveal that the Project was, in fact, this hairband.

The "pattern", such as it is, was very simple (Anna at Web Of Wool helped me figure it out).

Cast on 130 sts of 4ply yarn on 3.25mm needles.

6 rows stockinette, ending with a purl row.

Work fold line: (k2tog, yfwd) to end of row.

13 rows stockinette, ending with a purl row.

Work another fold line, (k2tog, yfwd) to end of row.

6 rows stockinette, ending with a knit row.

Cast off, embroider flowers, fold the fold lines, press, then sew the long seam along the underside of the hairband, and join the ends together.

Does anyone else find it kind of... deflating, when a month's work is condensed into seven short sentences?

I wrapped it up and sent it to my mother to look after until my sister's birthday last week. On the day itself, I phoned my sister and sung Happy Birthday at her. But she hadn't opened her presents yet (in fact I don't think she was out of bed) so I don't know if she liked it or not. Certainly she hasn't phoned, emailed, written or even texted to say thank-you... although she did text Steve to thank him for the happy-birthday text message he sent her... but then, some of you know her in Real Life. It could be that she didn't like the hairband, it could just be her being forgetful/thoughtless/rude, or it could be that I've managed to somehow upset her even from 200 miles away. Who knows.

This morning we had the first Jehovah's Witnesses since I've lived here. I opened the door and there were two women saying "hello, lovely to meet you!" and then actually trying to step up into the house. When I physically blocked them and asked who they were, they spotted that I was leaning on a walking stick. I've never seen such a look of... well, I don't know what it was. Pity? Revulsion? All remarks from that point on were addressed to the stick. Maybe they thought I was going to hit them with it. Maybe I should have done. Still, it does feel a lot more like I live here every time something like this happens. And that's nice.

Life is very steady at the moment. After the turbulence of the last twelve months or so (the benefit crap, the moving house, the new job, Christmas, the financial crisis, the further benefit crap, and any amount of nonblog Aaarg) we seem to have entered this nice, calm bay of serenity. Things are still far from perfect - money is still tight, I'm having a rough time with the illness and there's a list of things which need doing as long as my arm - but that's life. At least at the moment, everything critical is taken care of. I feel happier, more relaxed, and more fulfilled than I have done in quite some time. I think living with Steve has the curious dual benefit of being very sensible, but also very enjoyable. There are so many elements of our life together that make me disproportionately happy. One thing that gives me particular pleasure is making his lunches for him to take to work. Haute cuisine, it is not. It's basically a sandwich and a bit of fruit and some biscuits or similar. But it enables me to repay a little bit of 'looking after', and it's a simple thing, within my capabilities, that I know is appreciated, and that makes me feel good. I know it's a silly thing to blog about, but at the moment, I'm so contented, possibly more than I ever have been, and I want to kind of put that in my mental photo album to remember in the future.