More PA Stuff

Wednesday was my second session with my PA. We went to the Pump Rooms in Leamington which is a sort of combination of art gallery, museum, library, tourist information desk, cafe, and function rooms. It was interesting, but in a slightly weird way.

We were wandering around looking at all the exhibits about the history of Leamington Spa, and of course a lot of that is information about, you know, the actual Spa part of it. Some of the more experimental equipment looked downright scary, but a lot of the descriptions made the spa experience seem like a lovely way to spend a day. The Victorian visitors to the spa would drink lots of water (although apparently it didn't taste very nice), and then you'd have a soak in this and a massage with that and a steam treatment over here and then you'd go through to a cooler room and relax on a sort of sun-lounger while someone brought you a drink and a snack. The place was purpose-built and therefore extraordinarily accessible, since a big chunk of the target market would by definition be elderly or infirm and therefore being wheeled about the place. However it is also beautiful, since another important aspect of its function was to be a pleasant and relaxing environment rather than a clinical one. Afterwards, you went across the road to Jephson Gardens to enjoy the gentle recreation and surroundings.

God, it sounded like bliss, the absolute art of relaxation. Which was the weird bit. To be a disabled and kind of stressed-out (don't ask) person, sitting in an accessible hydrotherapy and relaxation facility, which is no longer in use but gets given money to produce displays and information about how fabulous it once was...

I still haven't got the hang of having a PA yet, though. The problem isn't her - she's lovely and doing really well. I just can't seem to get my head around having an employee.

For example. On Wednesday, when we got back from our outing, I was feeling pretty rough, and I wanted a cup of tea. So while my PA brought in the wheelchair, I shuffled through to the kitchen and started trying to make a cuppa. I was visibly and obviously having trouble, and my PA asked if I'd like her to do it. Full marks to her for asking rather than muscling in. But I messed up - I autoresponded with "no, no, I can manage" just like I would if a friend was there.

But my PA is not there as a friend. She's there as an employee. Helping me with the normal stuff (like tea-making) that is difficult or painful for me to attempt to do is not an additional favour that I would be unreasonably demanding of a friend who has already put themselves out for me by taking me out. It is the entire reason she is there and is what she is getting paid for. It is unfair of me as an employer to expect her to stand around like a lemon watching me struggle when she is aware that her job description is to help me so that I don't have to struggle.

I really have to try and get to grips with the whole idea. Intellectually I get it, but in a more immediate sense, it's just... I get through my life by insisting that I am capable of being independent, that I can Do Things, although they might be more difficult or take longer. In my day-to-day life I do any number of things that are stupid or reckless or painful simply because they need doing and no one else is likely to do them - like hanging up laundry or heating up food or washing up dishes - and then I fall over or spill stuff or scald myself or break something - and then I basically yell at myself to stop being such a useless pansy and get the hell on with things. But it gets worse, because then on the occasions when I am offered help, I push it away! For instance, I'm so sick of people assuming that Steve does everything for me and waits on me hand and foot, that I overcompensate in trying to make sure he doesn't do anything of the sort. It's even worse with people I don't know well. Admitting I can't do stuff and asking for help is like doing a DLA form. I hate it. It makes me feel vulnerable. It's also really irrational and I need to find a way of sorting it out.

Good Start

Today was the first day with my new PA and I don't think it could have gone better.

She came round this morning, bang on time, which is always a good start. We spent a while going through the formal paperwork (and hooray for P at the Rowan for making sure I knew exactly what needed doing to each piece), and I also gave her the instructions for what to do in case of those little emergencies, so frequent in my life, that aren't 999 emergencies but involve me being too incapacitated to explain what's going on as the situation unfolds. I'd used an online translation tool to print up those instructions in both English and in her own first language, and she seemed a bit surprised by that, but in a good way. I was a bit concerned about whether it was the right approach - on the one hand, I wanted to be 100% sure she would know what to do in such a situation rather than have to translate as well as cope, on the other hand, I didn't want to seem patronising as her English is pretty good - but it seems to have gone okay.

After that, it was just a question of showing her how to take apart and reassemble the wheelchair and we were off and away into town. Nice and relaxed, we went into a few shops in the generally quite accessible central part of the town. She listened well to advice about how to best tackle certain obstacles (such as the trick of going backwards to get through a door with a lip), and in shops she was really good about browsing nearby without hovering over my shoulder or making me feel rushed.

The weather was gorgeous so we sat outside at the Olive Garden Café and I had some juice and a snack and enjoyed watching the world go by for a bit. Then we went to the park for a wander-around. Turns out this is something we have in common - we both love the sunshine.

I guess it sounds like a strange thing to get excited about. "It was my day off. The weather was nice. I went into town, looked in some shops, bought a couple of things, had something to eat, and then went to the park."

But the really exciting parts, you see, are things like:

• I'm having a bit of trouble with my condition at the moment and usually that would prevent me from attempting to go out unless absolutely necessary, but today it didn't have to.


• Usually at the park I'm feeling grateful and indebted to whoever is pushing me and feel bashful about giving directions (especially when I want to go uphill), but today I didn't have to, I could go wherever I wanted and that was very empowering. Of course I've done that on the scooter, but,


• When I started to feel very unwell and crumpled up, I didn't have to try and find my way back to anywhere, or fend off any concerned passersby, or use up reserve spoons I don't have trying to cope, as someone was there to keep me safe and help me medicate and generally take charge of the situation.


• Once I'd got home and rested, I woke up feeling my version of "normal", rather than having arms and legs screaming from the effort and wondering why I did this to myself just for an amble about. I should still feel alright tomorrow - I haven't overexerted myself for the sake of a watch battery and a cheese and ham panini.

Next week I think I might see about going swimming. I fear that part of me is going to run into trouble thinking of Things To Do, now that I have someone available to help me do them. Suggestions would be very, very welcome.

Nobody knows what's going on...

Being one who cannot walk or drive or use public transport, I sometimes make use of the local Community Taxi scheme. This is administered on behalf of the local council by a local football club whose premises are also used for all sorts of "community ventures". A journey by community taxi isn't as cheap as a bus, is only available during daytime hours, and you have to book a couple of days in advance, BUT it's door-to-door, it's guaranteed accessible and it's about half the price of a normal taxi, so swings and roundabouts. Generally, for unplanned things I need to use a normal taxi, but for planned things like say a dental appointment I use the community taxi. So far so good.

In February I got a letter from the football club telling me that the Service Level Agreement with the local council would expire at the end of March and that the council had decided it would not be renewed. The letter told me that the council would instead be issuing "taxi tokens" for people who could not make use of a bus pass.

Today is March 16th so there are 15 days left until the change from community taxi to taxi tokens. I still hadn't heard anything from the council, but we know that some of our post is *cough* going missing *cough* so I thought I'd phone the council to make sure I hadn't missed the letter and ask things like "what are taxi tokens?" and "when can I have some?"

The chap on the phone said they don't know what's happening yet. He said they were hoping a decision would be made within the next two weeks and that then people using the community taxi scheme would be written to and informed of what was going to happen. I don't know how long it will then take to physically distribute these "tokens" or where/how they might be redeemable.

So basically, having tossed the old system, which wasn't perfect but helped a lot of people, they hope they'll have decided what new system they want to use before the old system expires.

All of this makes me even happier to be able to report that it shouldn't bother me too much, because I now have a PA to take me places. She starts this week. A big round of applause for P at the Rowan Organisation who has very competently and patiently guided me through the entire process of getting Direct Payments and becoming an employer and hiring a PA, from advertising to insurance to contracts and everything else that goes with it. It's an awful lot to try and understand, especially with my brainfog on, but P has always been able to answer my questions and explain things clearly, thoroughly, and (this is important) without making me feel like a moron.

Regrettably the local council's SLA with the Rowan is also expiring at the end of March, so I'm losing the marvellously competent, efficient and trustworthy P, and in much the same way as no one can tell me about these taxi tokens, I still don't know who I'm getting transferred to instead to steer me through my first months as an employer.

I fear April may be Interesting.

Knitting - G1 cosy

G1 cosy - front
Originally uploaded by girl_of_bats

I've recently upgraded my phone to a G1, and one thing about the G1, there aren't a lot of cases available. It comes with a plain black neoprene sleeve to protect it from knocks, but I wanted something a bit more personal, so I made this. It makes use of deliberate mistakes and was inspired by Kate Haxell's "sheryl" bag in issue 14 of Let's Knit! (Jan 2009). I made it with DK yarn leftovers that I happened to have handy, but I'm considering making another one with purpose-bought yarns, maybe in more summery colours.

MATERIALS

Just under two 1/2 skeins (60 yds each) of dk yarn in contrasting colours. I used Rowan RYC Extra Fine Merino DK in red (Yarn A) and Rowan Pure Wool DK in indigo (Yarn B). Any DK yarn should be fine.

4mm needles (or size needed to get gauge)
3.5mm needles (or a size or two smaller than previous needles)
Cable needle
Tapestry needle for sewing up

This phone cosy is knit as a single strip of fabric, folded once, and sewn up the long sides. It is supposed to be in addition to the functional-but-boring case provided. It has one decorative side, and one tighter-knit and plainer side, to protect the screen of the G1 if you aren't using the original case.

Using larger needles and Yarn A, cast on 22sts.

Row 1: (k1, p1) to end. Repeat for a further 9 rows (moss stitch).

Starting with a k row, work 6 rows st st.

Row 17: k7, c6f (put 3 sts on the cable needle and hold at front of work, k the next 3 sts, then k the 3 sts from the cable needle), k to end.

Row 18: p

Row 19: k9, m1, k to end.

Starting with a p row, work 5 rows st st.

Row 25: k15, p1, k1, p1, k to end.
Row 26: p3, k1, p1, k1, p1, k1, p to end.
Repeat these two rows twice more.

Row 31: k3, switch to Yarn B (YB) k3, switch to Yarn A (YA), k to end.
Row 32: p16, YB, p3, YA, p3.
Repeat these two rows once.

Row 35: k3, YB, k3, YA, k3, drop stitch (DON'T PANIC! This is the m1 stitch from row 19 and so will only unravel back that far), knit the next stitch tightly, k to end.

Row 36: p15, YB, p3, YA, p to end.
Row 37: k3, YB, k3, YA, k to end.
Repeat these two rows once.

Row 40: p15, YB, p3, YA, p to end carrying YB behind work to end of row.

Row 41 (YB) purl. This forms the fold line for the bottom edge of the case.
Row 42: purl, and switch to smaller needles.

Row 43 (and all odd rows): k3, YA, k3, YB, k to end.
Row 44 (and all even rows): p15, YA, p3, YB, p to end.

Repeat these two rows until the second half of the case is the same length as the first, not including the moss stitch section. For me, with these yarns, this took me to row 76. Carry Yarn A to the end of the final row.

Row 77: YA, change to larger needles, knit to end.

Row 78: (k1, p1) to end. Repeat for a further 9 rows (moss stitch).

Row 88: Cast off.

Making up: fold the fabric at the fold line and sew the two long edges using mattress stitch. Sew in ends. Make sure the dropped stitch has laddered properly, back to the cable. Tie a little of yarn B around the cable, or any other adornments you want.

Two Ticks

At this time of economic gloom and woe, I am almost embarrassed to report I have landed another job interview.

I am confident that I deserve this interview as I wrote (well, typed, thanks to the accessible glory that is an online application) next to every disability-linked question and every 'if you are shortlisted for interview'-linked question that I was NOT requesting an interview under the Two Ticks scheme* and did NOT want to be shortlisted on the basis of my disability.

My only concern is taking the time off from my existing job to attend the interview, as it's on a day when we tend to be both busy and understaffed at the best of times. I'll have a word with my manager today. I suspect I'll end up stashing jeans and trainers at work the day before, so that I can go in straight from interview and change out of my suit there.

I realise this is really quite a smug position to be in.

*The Two Ticks Scheme

This is a scheme that quite a few large employers sign up to, recognisable by a symbol of two ticks encircled by the tagline "positive about disabled people". The part of it that is relevant here is a pledge that if a disabled candidate has shown on their application that they meet the minimum stated requirements for a job, that candidate gets an automatic interview. This helps, because a lot of disabled people wouldn't make the first cut due to things like:

- one or more long periods of unemployment
- previous employment mostly in an entirely different field
- an unusual pattern of education
- employer prejudices

... the idea being that once a person is in an interview setting, they can better explain and show how they are the right person for the job, how their nonstandard CV is proof of their ability to adapt to situations and overcome obstacles, how they are pleasant and competent individuals who will be an asset rather than a burden to the existing team, and so on. Or indeed not, as the case may be. Either way, the person gets interview practice, hopefully some interview feedback so that they have an idea where they should improve things, and a greater chance of getting a job when their CV might otherwise have gone straight into the bin.

Which is all great, but there's a flipside. Going to an interview takes up time, energy, and money, three things that your average disabled job applicant is not rolling in. You have to get your suit cleaned and your shirt ironed, you have to research the company, practise some answers for likely questions, arrange for a lift or pay for the taxis there and back, you have to deal with spending the 24 hours beforehand feeling utterly queasy with nerves.

If you already work, then it's even worse. You have to have that uncomfortable little discussion with your boss that (s)he might be about to get asked for a reference. You have to worry about whether the knowledge that you applied for another job is going to adversely affect you when it comes to managerial decisions about promotions or redundancies or pay cuts. You have to book time off work, and if that's not possible and the interviewers can't offer a different day, you have to start weighing up abandoning the interview vs throwing a sickie...

All of which might very well be worth it, if there's a genuine chance of getting a decent job at the end of it.

Unfortunately for a Two Ticks candidate, a job will (and must, and should) always go to the person most competent to do that job. If you meet the minimum criteria and turn up for a Two Ticks interview, and five other people (disabled or otherwise) are being interviewed who meet and exceed the maximum criteria, well, you're never going to get that job.

Also unfortunately, nepotism is alive and well and probably always will be. I have seen a couple of jobs where the position was publicly advertised (because it's a requirement of the company policy), the disabled candidates were interviewed (because it's a requirement of the Two Ticks scheme), and then everybody had to try and not look surprised when the position went to, at best, an internal candidate, and at worst, the repugnant offspring of the managing director.

In such situations, the Two Ticks candidate has NO chance of getting the job. All (s)he gets is a lot of expense and hassle and a smidgen of interview experience. Which is fine if interview experience is what you want... but personally, I'd rather only attend interviews where I know I have a reasonable chance of being the one who gets the job.

Edited for grammar 22:27 12/02/09

On being a bear with a sore head

"And the angel clothéd all in white opened the Iron Book, and a fifth rider appeared in a chariot of burning ice, and there was a snapping of laws and a breaking of bonds and the multitude cried "Oh God, we're in trouble now!"
Book Of Om, Prophecies of Tobrun: Chapter 2, verse 7.
From the first edition (since rescinded).*

Oh yes, I am not the bunny who is happy today. I've grouched in the morning and I've grouched in the evening and I daresay I'll grouch at suppertime too for good measure. I am grouchy to the left and grouchy to the right and grouchy everywhere in between. Fear my grouchiness.

The reason for the Grouch is the Pain and the reason for the Pain is the Cold and the Snow. I don't do well with cold and snow. Every muscle is tightened, every joint is throbbing with white-hot pain. Dealing with the pain makes me exhausted and being exhausted makes it more difficult to deal with the pain. Always and in everything this sodding pain as a consistent acid-laced thread and I have had ENOUGH.

During the course of today I have had far too many immediate and disproportionate mental responses to the tiniest of transgressions. Generally it has involved a fervent wish for something extremely uncomfortable to be shoved in a distinctly unpleasant orifice belonging to whichever unfortunate mortal has been foolish enough to cross my path.

I think any minute now I may cross that line between 'being a bit prickly' and 'being a bit of a prick'. So I'm typing up this blogpost to try and avoid doing that in public or to someone who doesn't deserve it.

Thank you for your patience.



* as detailed in Thief of Time by Terry Pratchett.

If I was a writer, I would say I have writer's block.

I'm not sure what the blogger's equivalent might be. Suggestions in the comments. I have all sorts of ideas and then I open up notepad and all I can manage is one or two horrifically-formed sentences which I would be embarrassed to put my name to. To which I would be embarrassed to put my name. You see? So I'm afraid for now we'll just have to settle for this rambling hotch-potch of miscellaneous Thoughts.

My cold got better, I managed with just one day off work when it was at its worst and there was a fever to go with it which I think is fair enough.

Steve and I have done lots of Interesting Stuff and I have gone "ooh, I will enjoy blogging about this" and then tried to write a post and not got anywhere. So for now you'll just have to have the bare bones and add your own detail:

National Sea Life Centre, Birmingham.

Steve and I went with one of Steve's friends. They took lots of photos, you can see Steve's photos here. It was both soothing and interesting watching the various inhabitants of the tanks swimming about. The HUGE turtle was especially serene, and much more graceful than you would expect of something weighing more than two adult men. Accessibility was great, it's a step-free environment and I only saw one staircase, for which there was a small lift equivalent within a few metres. However wheelies should be aware it's a lot of slopes - the building has a surprisingly small 'footprint' but is multi-storey - so pushing assistance is recommended.


The Roald Dahl Museum and Story Centre.

As a lifelong Roald Dahl fan, I have wanted to go to this since it first opened. Encouragingly, Steve and I spotted it in the Rough Guide to Accessible Britain so off we went. It was everything we hoped for. The Archive has all sorts of original material, from first drafts of books to letters from his publisher, from the telegrams sent to his parents to congratulate them on the birth of their son, to the regular letters home that he wrote throughout his life. The museum has some of these items on display in museum cases, with the items changed every three months to preserve them from light damage. That's quite exciting for a fan, to see the actual items themselves. But the heart of the museum is its child-friendliness and hands-on-ness. One particularly thrilling piece was the reconstruction of his writing-shed, complete with a filing cabinet of which one drawer was open - and in the drawer were letters from the publisher and annotated drafts and whatnot, looking for all the world like the real thing (they are printouts of the scans of the originals).

I can't be positive enough about the museum, and it's not just the fan in me talking. Look at the website. The accessibility isn't a joke, either - not only can a wheelchair get everywhere easily, but there are also plenty of seats, carers/PAs can get in free, and other adjustments (such as audio transcripts) are available. The only, only hitch is that due to the historic nature of Great Missenden High Street, there's no immediately nearby parking facilities - it's several minutes' walk, which could cause difficulty for wobbly walkers.

Add in a sprinkling of bowling, knitting, meals with friends, a visit to the park, and some shopping, and I haven't been bored. I just haven't been blogging, is all.

The job advert for my PA was in the paper last week, and there's just under three weeks for all the many millions of hopeful candidates to get their applications submitted. Finding the right person is going to be a delicate balancing act. For instance:

- I must get on well enough with them to be able to trust them with my safety and relax in their company. However at the same time, they're not being paid to be my friend, and the relationship must stay on a professional footing.

- They must be able to accept that I'm the one in charge who decides what we are doing and when and how we are doing it just like any other employer/employee dynamic. However they have to be confident enough to take control of a situation when I'm suddenly slumped up and barely conscious.

You see what I mean? And how does one find out this sort of thing in an interview? I think I may have done better to advertise for "henchman required, to enable disabled evil genius to take over the world. Experience with lasers an advantage," at least then I'd know I was getting the right sort of people applying for the job.

Suggestions for posts welcome, anything to get me writing properly again.

Eek!

The job advert for my Social Care Personal Assistant (PA) has been confirmed to run in a local paper next week, as well as to be put up at the local Jobcentre and the nearest university. The closing date for applications will be three weeks after that, and provisionally I will hold interviews two weeks after that.

So hopefully, in the next month or so, I will have some help to Do Things other than work, to the tune of three hours a week. "Things" essentially means anything out of the house that I can't do by myself, so some of it will be leisure activities (like going swimming or shopping) and some of it will have to be essential nonwork activities (like going to the CAB or hospital appointments).

It's going to be a great relief to be able to get help with these things rather than having to either depend on the goodwill of friends, or weigh up an activity against whether Steve could be allowed to take time off work and whether we could afford for him to do so (as a contractor, Steve is only paid for hours worked, with no rights for sick days, holidays, care duties, etc).

The learning curve for How To Be An Employer is astounding, and this despite the fact that I am having my hand held all the way through by the Rowan Organisation. I suspect I'm not making it any easier for myself by trying to be the kind of employer I would want to be employed by, while bearing in mind it is a job that I do not have the physical capacity to do.

The other bit which does my head in is that the going rate for a PA is £7.70 an hour plus mileage and expenses. This is substantially more than I earn, so basically we're saying that my assistant's time is worth more than mine is. That stings a little.

Still, it's not my money, unless I want assistance for more than three hours a week. If I'm lucky I'll manage to find someone really good, who is willing to go beyond just pushing the wheelchair where I ask her to, and actually help me develop my life a bit and come up with some fun things to do. In return they get what's really one of the less arduous ways to earn £20, not to mention the opportunity to participate in various leisure activities without having to pay any entry fees. It's a great job for the right person.

My next task is to try and think of about a dozen questions for interview. Some are no-brainers, like "tell me more about what you're currently doing," or "why do you want this job?" and then there's good old-fashioned trick questions like "so what are you doing with the rest of your day?" but beyond that I've no idea. Is it too optimistic to shove in one about the social and medical models of disability? As ever, all help gratefully received.

99 Things

I don't usually do memes but this one from Carie looked interesting.

If you join in, please leave a comment so that I can read yours.

Things you've already done: bold
Things you want to do: italicize
Things you haven't done and don't want to - leave in plain font

1. Started your own blog. You cannot imagine how hard it was to resist leaving this one in plain font.
2. Slept under the stars. Although not for an entire night.
3. Played in a band. If you count school orchestra. If you don't, then I haven't and do not want to.
4. Visited Hawaii.
5. Watched a meteor shower.
6. Given more than you can afford to charity. That would be daft. Plus, since cripdom I've become unsure about charities. It seems that they end up doing an awful lot of things that really, our taxes are supposed to cover one way or another. It's not a tragedy that little Bobby aged seven and three-eighths will need to use a wheelchair for the rest of his life, but it's a goddamn disgrace that neither the NHS nor social services will provide a suitable one and he and his family are forced to beg for pity from strangers...

7. Been to Disneyland/world.
8. Climbed a mountain. No, I have quite enough adventure and struggle getting around Sainsburys. You guys climb the mountain and I will stay at the ski lodge making sure the hot chocolate is up to standard.
9. Held a praying mantis. Not a lifelong dream, but I'm not squeamish and will touch/hold anything that is offered (oi, stop sniggering at the back).

10. Sang a solo. You don't want to hear me sing.
11. Bungee jumped. Again, not a lifelong dream, but give me half a chance and a change of underwear and I will be totally up for it.
12. Visited Paris. One day I will actually get my passport sorted out.
13. Watched a lightning storm at sea. Although from the mainland - not while on a boat.
14. Taught yourself an art from scratch.
15. Adopted a child. Although if, when we get to that stage, it turns out Steve and I can't conceive, I would certainly consider it.
16. Had food poisoning.
17. Walked to the top of the Statue of Liberty. Not likely, see No 8.
18. Grown your own vegetables. Mandy started it and I put it in a sack of compost and it grew and bore fruit. It counts.
19. Seen the Mona Lisa in France. I'll be happy to look at it and say "ooh" if I happen to be there, but I'm not likely to go out of my way to see it.
20. Slept on an overnight train.
21. Had a pillow fight.
22. Hitch hiked.
23. Taken a sick day when you’re not ill.
24. Built a snow fort.
25. Held a lamb.
26. Gone skinny dipping.
27. Run a marathon. Not likely. See No 8.
28. Ridden a gondola in Venice. Wouldn't say no, but not desperate.
29. Seen a total eclipse.
30. Watched a sunrise or sunset. Many times - living by the sea has pluspoints.
31. Hit a home run. But only on WiiSports.
32. Been on a cruise. I want want want to do this. A couple of weeks in a self-contained environment headed for somewhere with nice weather, with all needful things close at hand (rather than having to arrange lifts or taxi rides), with the time and the facilities to do nothing but unwind, rather than having to go to work and plan epic journeys to Sainsburys and keep on top of the laundry and housework - it's my idea of heaven! Sadly it will never happen as it's Steve's idea of hell. And if I do it without Steve, then as we have seen, I will come home to enough stored-up housework to make the holiday and relaxation a complete waste of time.

33. Seen Niagara Falls in person. See No 19.
34. Visited the birthplace of your ancestors. See No 19.
35. Seen an Amish community. See No 19.
36. Taught yourself a new language.
37. Had enough money to be truly satisfied. Satisfaction for me is not having to panic about how to cover the essentials (eg rent, bills, food, medication, transport). Everything else is window-dressing. Enough money to own our own home or go on a big holiday would be nice, but isn't integral to feeling satisfied with life.

38. Seen the Leaning Tower of Pisa in person. See No 19.
39. Gone rock climbing. See No 8.
40. Seen Michelangelo's David in person. See No 19.
41. Sung Karaoke. Least said the better.
42. Seen Old Faithful geyser erupt. See No 19.
43. Bought a stranger a meal in a restaurant.
44. Visited Africa.
45. Walked on a beach by moonlight.
46. Been transported in an ambulance.
47. Had your portrait painted. Cartoonists count, right?
48. Gone deep sea fishing.
49. Seen the Sistine chapel in person. See No 19.
50. Been to the top of the Eiffel Tower in Paris. Is there a lift? If yes, see No 19, if no, see No 8.
51. Gone scuba diving or snorkelling.
52. Kissed in the rain.
53. Played in the mud.
54. Gone to a drive-in theatre. Never even seen one of these.
55. Been in a movie.
56. Visited the Great Wall of China. See No 19.
57. Started a business. Um. Does a school newspaper when I was 12 count? With no teacher involvement beyond getting my English teacher to agree to back me up when asking the head for permission, I raised the capital, I approached the school reprographics unit and negotiated a deal for paper and photocopying, and I organised a "staff" of other students. As a group we wrote the articles and sold it at breaktimes, getting out approximately one issue per half-term, except the time when we devoted the whole front page to reporting on a food fight, when I was called in to see the head and told that since a lot of copies went home and were seen by parents, the school would not allow me to continue with the paper if I distributed that issue. We made a profit even after repaying the capital and paying the running costs and providing prizes for several competitions. At the end of the year we were all leaving the school so we left some 'start-up capital' with the head of English, to give to anyone who was interested in doing a paper again, and split the rest between us - it wasn't a fortune, but it was enough for me to go to Woolies and buy all the stationery and bits and bobs I needed to start high school.

Now I put CDs in boxes, for a few pence per hour over minimum wage.


58. Taken a martial arts class. Aikido, when I was 16/17. It's supposed to be one of those forms which is pure self-defence, more about agility, poise and using your attacker's strength against them, than about competitive fights, big muscles and breaking bits of wood. As such it often gets marketed as very suitable for women. This is probably why I was usually the only female in the group of about 15 students.

59. Visited Russia.
60. Served at a soup kitchen.
61. Sold Girl Scout cookies.
62. Gone whale watching. See No 19.
63. Been given flowers for no reason. Well, for no reason beyond "I went into the supermarket and saw the flowers and thought I'd get you some." I get chocolate for the same reason. Steve is good like that.
64. Donated blood. And in the process, got over my fear of needles. I'm not allowed to donate any more, which is a little bit upsetting although I understand why.

65. Gone sky diving.
66. Visited a Nazi Concentration Camp.
67. Bounced a cheque.
68. Flown in a helicopter. Although it's a bit No 19-ish.
69. Saved a favourite childhood toy.
70. Visited the Lincoln Memorial. See No 19.
71. Eaten Caviar.
72. Pieced a quilt.
73. Stood in Times Square. See No 19.
74. Toured the Everglades. See No 19.
75. Been fired from a job. Nope - only ever left of my own accord or on health grounds.
76. Seen the Changing of the Guard in London. See No 19.
77. Broken a bone.
78. Been on a speeding motorcycle. I ride on the back of Steve's sometimes. We have been on the motorway, so we've done "speeding along" in the sense of "going really quite fast", but I can't see the speedometer from behind him so I have no idea about whether we've been actually speeding as in "going at illegal speeds".

79. Seen the Grand Canyon in person. See No 19.
80. Published a book.
81. Visited the Vatican.
82. Bought a brand new car.
83. Walked in Jerusalem.
84. Had your picture in the newspaper. Local paper only. I was a kiddie, it was something to do with the library. The clipping is in with my envelope 'o' childhood Stuff.
85. Read the entire Bible. Although I do follow it on The Brick Testament and I have more of a working knowledge than you might expect - my agnosticism is a considered and informed personal conclusion rather than a frivolous abandonment of my Christian duties.

86. Visited the White House. See No 19.
87. Killed and prepared an animal for eating. I reckon I could, and I'd certainly give it a go if I had to - I have no problem with the idea of eating dead animals or handling dead flesh. But I suspect it is be better, not only for me but also for the animals concerned, to leave slaughtering and butchering to people who know what they're doing and have the right tools for the job. I'd be more likely to give the animal a nonfatal wound which would not only make it distressed and fight-y but also make it so slippery with blood that I wouldn't be able to grab hold of it to finish things. Not good for anyone.

88. Had chickenpox. I *think* I was vaccinated.
89. Saved someone’s life. I'm not going to say I want to do this as that would require someone around me to be in a life-threatening situation.
90. Sat on a jury.
91. Met someone famous. If it was someone famous who was actually worth admiring, see No 19.
92. Joined a book club. Keep meaning to do this, in a sort of end-of-a-roll-of-sticky-tape way. But not an online one. I meet lots of people online. I need to meet more people in the real world.
93. Lost a loved one. I have very little experience of death. My great grandmother, my grandfather, and one of my uncles have died within my lifetime - but while I loved them I wasn't exactly in frequent contact with any of them and we didn't speak the same language, and we were discouraged from attempting to make the journey to attend the funerals. I suspect that losing someone very close, with whom you have a frequent or very intimate association, is something very different.

94. Had a baby. If we ever get round to it. My biological clock, which has never really been silent, is clanging that my prime fertile years are all but over. My rational brain is shouting that first we need to find a different, more suitable house (even if we can't buy, renting would be fine) with, for instance, a toilet on each floor and so on. My neurotic brain is shouting that something is bound to go wrong and that if we need any kind of fertility assistance, we'll only get it if we start actively trying to conceive before I'm thirty and that means we've only got three years left. My preferred prospective co-parent agrees with the theory of the two of us having a kid but is reluctant to take steps towards actualisation.

95. Seen the Alamo in person. See No 19.
96. Swum in the Great Salt Lake. See No 19.
97. Been involved in a law suit. I don't have the capacity to deal with something like that on top of my job, housework, life essentials (like showering and grocery shopping) and so on. This is why the DDA has no teeth. It is dependent on disabled people pursuing lawsuits, and many of us do not have the time/energy/physical wherewithal/mental stability to do so.
98. Owned a mobile phone.
99. Been stung by a bee.

Totals:
Things I've already done: 28
Things I want to do: 8
Things I haven't done and don't especially want to do: 63

From which we surmise that I'm an apathetic underachiever who doesn't live in America and doesn't get excited about going to look at things "in person".

To balance things up: got married; got divorced; broke up a fight; danced on a bar; climbed a tree; slept with someone old enough to be your parent; done volunteer work; been written poetry by a lover; partied until the sun came up; ended a violent and abusive relationship; watched every episode of a TV show; swum in the sea; protected a child from violence; been sincerely thanked for making a positive difference to someone's life; got the hang of cooking something your mother used to make; admitted being wrong; persuaded someone in authority to change their mind; built a computer from parts; bought something beautiful even though you know you will probably never use it... there we go, I feel better about my life now.

*sniff*

...uuurgh. I have Additional Lurgy in the form of a cold.

Happily it's not the rotten sort of headcold that wimps try to insist is "flu". Just a cold that is a cold that is a cold, with a sinus-y headache, a sore throat, and a metric smegload of snot.

*GRONK*

...uuurgh...

So yeah, another job in the paper I'm thinking of going for. It's a receptionist/admin assistant position, 15 hours a week, for a children's charity. BUT, I have to phone the Mr Director for "an informal chat" about the position, and right now on the phone I sound so icky and goopy and contagious that he'd probably want to autoclave the phone after speaking to me, rather than encouraging me to send in a germy application form. So it'll have to wait a couple of days.

In better news, I'm on track to become an employer myself - my Direct Payments are ready to go just as soon as I've advertised for, interviewed and selected a personal assistant. For this I have sought assistance from the Rowan Organisation but if anyone's got any top tippery they care to share, the comments are open as usual.

Not Blown Up After All

... just a bit tired out.

The New Year fireworks were a resounding success, with the only casualty being one of L's gloves which got singed by a lighter. Then Steve and I enjoyed one day to rest, one day back at work, and one day to get the house passably tidy in readiness for my mum to come and stay for a few days.

We got lots of nice Christmas presents from my family, including a shiny and very spiffy set of saucepans. Nice as they are, sadly, these have not been the accessibility revolution Mr Rhodes seems to think. Firstly, as you will see from their lovely little "42" diagram on that page, the recommended angles only work if you have kitchen surfaces at well below waist height. Secondly, if you watch the video, you'll see that to drain from the saucepan, you need to hold on to the knob on top of the lid as you tilt - fine when it's empty, but in a real world situation that means your fingers are right in the path of the concentrated column of steam as you drain the boiling water away. And thirdly, you actually need more strength in your arms to manipulate it than with a standard pan, because there's no way to get a two-handed grip in order to use the handle as a lever to create stability.

So don't buy them to try and make cooking easier. But, that said, they are very nice saucepans, with a lifetime guarantee. Using the variable draining-holes in the rim of the lid to release varying amounts of steam is handy. And they are fully backward-compatible with a regular colander in the normal way. ;-)

Christmas dealt with, it was just about time for my birthday, which was the main reason for mum visiting. I took down my lovely tree and packed it neatly away for next year.

Between all of them, and Christmas and my birthday, my family have bought me just about every book that was on my Amazon Wishlist. I was absolutely bowled over. I always have to read every book at least twice before I can consider it not-new, and I can't read just new books (it's an ME thing) so this should keep me excited about having books of newness for at least three months, if not longer.

It was good having mum about for a few days. We've always talked lots. As a kid, she would tuck me in to bed every night and we'd chat for a few minutes. It was my opportunity to talk, as there was no getting a word in edgeways with my sister about. In sixth form, my Thursday morning free period was designated as our Cream Cake Day. When I lived in my little flat, I would come over to use the washing machine and stay for a cuppa and a bit of a chat about nothing very much at all. When I got sick, we had a cup of tea most days, and it added routine and a strong element of familiarity to a world which had been turned upside down. Since I've moved to Warwickshire, we still email or speak on the phone if we have anything particular to say... but it was nice to once again just sit and enjoy a quiet, non-pressured chatter with each other.

That said, it was also nice when mum had left, to be able to come home from work and fall apart by myself, without feeling that I had to put a sociable face on. I love my mum but we probably shouldn't live together.

The people at work gave me cake and flowers, which made me squee with delight. Steve is getting me a watch, just as soon as we actually have a spare half-hour to go into town together so I can try some on. He's also sort-of got me a combination printer/scanner/photocopier doodah, which will link to our wireless network and allow us to print from anywhere in the house. He says this doesn't count as a birthday present though, since it's for both of us to use and it wasn't wrapped, he just happened to buy it the evening before my birthday. I think it counts though. It was definitely a surprise - he only went out for a pint of milk.

So far being 27 isn't much different from being 26, except it's increased that feeling of being stuck in a rut.

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.


January
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
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.

March
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...

April
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.

May
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.


June
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.

July
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.

August
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.

September
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.

October
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.

November
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.

December
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!

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... :(

Tree!

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:


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.

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.

IKEA

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.

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.

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?

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.