43/52 2017

Week 43
23 - 29 October



My mum got Jamie play-doh for his birthday, along with a lovely big tub of all those tools and accessories which my primary school self had never got a chance to play with. Well, I'm getting my chance now! Jamie's number one request is for "blue noodles" which is lovely squishy crushy therapy for a mama.

Interestingly, Jamie doesn't like to touch the play-doh with his hands. He'll ask other people to do things for him and he'll use the various tools, but he actively resists giving it a good squish.

Wee!

Someone once told me that their overriding experience of pregnancy was going hither and yon with a handbag full of wee, ready to give to whoever asked for it next.

At the moment I'd say there are quite a few things registering rather more strongly on my radar, but I couldn't go so far as to say she was wrong.

Certainly the approach to wee seems to be quite different when it comes to obstetrics, compared to any other department I've dealt with. In obstetrics, it's all about the wee. Seriously. You must turn up to every appointment with a urine sample, or a full bladder, or both. I have an appointment coming up to discuss birth options with my consultant, but I had to contact the hospital to find out what the appointment was for and who it was with, because the only details anyone saw fit to include in the appointment letter were the time/date/location and the necessity of bringing wee. I'm not even sure why wee would be relevant to that appointment. Maybe it's just a standard line on their appointment letter template.

The response to a sample is different too. In other departments, you slightly shyly proffer your sample and say something like "do I give this to you?" and the doctor or nurse either says "yes, I can take that," or "no, hang on to that and give it to (person)." In obstetrics, almost without fail, the response is a gleeful "ooh, yes please! We love wee!" and do you know what's really upsetting? That's not even bothering me any more.

Oh but it's easy!

Anyone who's ever so much as hovered on the fringes of wedding planning will have seen one of these articles. Shocking rise in the cost of the average wedding, picture of tasteless pink bride standing next to cake the size of a respectable starter home, reassurance that it doesn't have to be that way, followed by awesome photographs of a stunning wedding and reception that, according to the bride (I'm afraid it is usually the bride) involved, cost less than £500 and a marvellous day was had by all.

Great! you think, and start reading through for hints and tips. And then you start to realise that what she actually means is that the wedding expenses that were significant enough to be counted only cost her and her husband £500, and she either hasn't realised the cash value of other people's contributions, or she's choosing not to count them in a bid to gain moral high ground on the basis of frugality.

You realise that the wedding was conducted by Uncle John the vicar, who was able to waive all fees from venue hire to bell ringers, and jolly the Church Ladies into making that week's floral decorations in the preferred wedding colours.

You find that the dress (normal shop price: about £800) was made by the bride's ex-housemate who just happens to be a wedding dress designer/seamstress, that the fabulous cake (normal shop price: about £400) was donated by Auntie Linda who just happens to be a baker and decorator of wedding cakes, and that the food (normal shop price about £20 per head) is being provided free of charge by the groom's parents who just happen to own a catering business. A cousin who's on a hairdressing course, an uncle with a posh or classic car, and a friend-of-a-friend who's just setting up in the DJ business are optional.

You are told that "it's easy" to make your own invitations and place cards and so on for a modest outlay of about £50. Assuming, of course, that you have already invested several hundred pounds in a decent trimmer and a selection of corner punches, a proper craft knife and cutting board, a decent printer, endless accessories like glue dots, pritt stick, and backing card - and assuming that you possess a certain degree of design aptitude.

Next you discover that the amazing photos were taken by a professional. The fact that a decent professional photographer will often charge a three or even four-figure sum for shooting a wedding isn't mentioned - the photographer was either another person the couple just happened to know who owed them a massive favour, or he was hired by the families as a gift.

Yes, it turns out that the way to have a wonderful wedding on a budget is to be surrounded by generous, interested family and friends who are already (a) professionals in wedding-related industries, (b) incredibly creative, and/or (c) prepared to spend their own money so that you don't have to. Easy! Erm...

We're spending money on professionals to take care of certain aspects of our wedding. This is not a moral issue.

We're definitely looking forward to getting married, and to having the party with our nearest and dearest, but I think we'll also be glad to escape from the insane and contradictory world of wedding planning.

Good news

This post is not wedding related. And truth be known, I feel guilty about posting it at a time when cuts and reforms are playing merry hell with the lives of so many of my disabled friends.

I appear to have won at Social Services, and now I don't know what to do with my good fortune.

As part of Steve going back to work, I've been reassessed. Steve's new job involves a much longer commute as well as regular trips further afield, and that in turn means that there's less expectation on him to provide my care.

This is going to get complicated so first I have to explain about Direct Payments.

Direct Payments are paid into a bank account in my name and I am the only person who can access that account and distribute the money. All contracts are between me and the PAs or agencies who I choose to employ. This gives me control over my care. To give a simple example, I could decide to skip showering on a Thursday in order to 'carry over' enough time for a long bubble-bath on Friday.

What I can't do is take the money and spend it all on sweeties and computer games. Social Services closely monitor the account to make sure that it is only spent on items and services approved in my Care Plan. I can't invest it, and it doesn't even count as my money on my tax return. And once it's gone, it's gone - if I have long bubble baths every day for a fortnight and then realise there's no money left in the account to pay the agency for the rest of the month, that's entirely my problem and my responsibility.

Supposedly this reduces the admin costs for Social Services as they are no longer the first point of contact and no longer have to manage the carers or negotiate with agencies. They identify needs and then supply the money. Choosing the best way to spend the money to meet those needs is no longer anything they have to worry about.

So I've been identified as needing 45 minutes of help with personal care each weekday. I have some interviews (sales pitches) with agencies this week and hopefully something will be set up soon. Once it's set up, there's also scope for us to call in an agency carer should I need one when Steve's away from home for longer periods - even if we had to add the extra money privately, the 'account' would be in place.

They've also changed my social care. Previously I got money for the stated purpose of employing a PA for three hours a week to help me do "out and about" things I needed help with. This was about £30 per week - most of it for the wages of the PA, the rest to cover specified necessities like Employer's Liability Insurance, placing job adverts when I need to hire a new PA, that kind of thing.

Now, my assessment says I am at risk of social isolation (the internet doesn't count, who knew) and therefore eligible for two days per week of "daytime opportunities", but thankfully identifies that it would be inappropriate to send me to a daycare centre for two days per week. So what Social Services are doing, is taking the money they would spend on my daycare centre place, and giving it to me as a Direct Payment. It is rather more than £30.

We've identified that I will continue to employ my PA for three hours each week as a baseline, but after that, it's looking a bit blank, because I simply can't think of much to do.

This is apparently an indicator that I have already become used to social exclusion.

I don't just have to use it on PA wages. For instance I asked if I could use it for taxi fares to go to a knitting group or to a friend's house, situations where I don't need a PA sitting right there with me for two hours, but I need someone to make sure I get safely there and back. Apparently I can, as long as I get a receipt, and keep a log of the purpose of the journey (which must be 'social').

The best and worst of this system is that there's no list of approved uses. There couldn't be, because there's so many different things a person could do. I have to think of something I'd like to do, and then find out how much it costs, and then they'll tell me whether I can use my Direct Payments account for all, none, or some of those costs.

It's also a bit experimental. My Independent Living advisor tells me I'm the only person on her caseload so far with this setup. So no clues from that direction.

Ideas, anybody? So far all I've got is an Action Point of going to the library on Wednesday to see what clubs and groups and things are running in the area.

Ugh!

Over the last few months I've been hanging around on a couple of bridal/weddingy forums.

For very good reasons, it's not the Done Thing to out and out criticise other people's wedding choices.

It's acceptable to offer constructive input when asked, and to show respectful interest in the different customs and traditions being observed. That's a good thing. When someone is trying to decide between bows and floral swags to decorate the ends of the pews in their church, it's a good time to offer any experience of those products, but it's not the time to spark a fundamentalist religious debate about whether they should be getting married in a church at all. Tolerance is important in a community and it's great that different people, in different countries, having very different weddings, can all support each other.

This, however, is not a community. This Is My Blog, just like it says at the top of the page, which means it's not inappropriate for me to voice my opinions, and this has been bubbling up inside me for months now. In the interests of civility, I must stress that I recognise that different people have different tastes and if you want any of this stuff at your wedding, you go ahead, it's your wedding. If you are planning a wedding, or you just had one, you may prefer not to read any further. This is your fair warning: you may be offended.

But at last, I must say that I find the following things hideously tacky.

• White hoodies with diamante transfers saying “Bride” or “Maid of Honor”. (American spelling intentional.) Yes, while getting ready for your wedding it's a good idea to wear something warm and comfortable that can absorb any spills. It's good to wear something that is fully front-fastening so it can be removed without disturbing your hair and makeup. But white with diamante? My dear, you will get enough attention today once you're in the dress. Be content.


• Flip-flops with soles that print “Just” and “Married” as you walk along wet sand. My PA spotted these in a craft store and proposed them as the winner of that store's Wedding Tat collection. And believe me, they had some tat.


• Hen parties with “naughty” games and gifts. Well done, it's a (whatever) shaped like a penis. It's not comical, it's not erotic, and the faint air of desperation is unsettling. Lingerie and sex toys can be great, but I can't imagine there's anyone who's actually turned on by pink plastic fluffy handcuffs, or anything with a picture of a cat and “Sex Kitten!” emblazoned across the front.


• Music on the wedding website. Internet access has reached a point where even your parents have it, so a wedding website is no longer necessarily a celebration of self-obsession viewable only by other geeks who aren't invited to the wedding anyway. But automatically playing music is a step in the wrong direction, as are hearts falling across the screen, or anything that won't properly load onto the smartphone of a guest who's got lost on the way to the venue.


• Vistaprint overdose. On the one hand, Vistaprint do a very good line in affordable, fuss-free printing that can be invaluable for things like invitations and RSVP cards. On the other hand, just because they can put your picture on more or less anything, doesn't necessarily mean it's a good idea. The overdosing idea also applies to people who went to a venue dresser for a few flowers/balloons/table decorations, and ended up ordering a twenty-foot-tall inflatable Bride and Groom in the belief that these would somehow look appropriate outside their elegant, classy venue.


• Pretending to be something you're not. This covers people getting married in churches who don't believe in God, people getting married in libraries who don't read, people who order glass carriages and aren't princesses (Kate Middleton got that bit spot-on), and people who order fancy formal meals that they're not sure how to eat. You make some pretty hefty promises on your wedding day - make them as yourselves.

Ohhhhhh, that feels better.

Pointless Invention

Today I saw what is possibly the most pointless piece of "time-saving" technology ever.

Sainsburys are trialling Prescription Vending Machines. You log in with your fingerprint and/or ID number, put your prescription into the machine, and get your drugs out.

On the face of it, wonderful. I get pretty much the same incredibly common drugs every four weeks and it would save me about twenty minutes a month if I could insert my prescription into a slot with one hand and pick up my tablets with the other.

Then I saw this BBC piece on how it actually works (that link goes to a video piece, I haven't yet found a written article). I'll do a step-by-step description, with what happens when I use the human pharmacy in italic text and the way the machine works in bold.

I go to the pharmacy counter, write the date and sign the prescription form, and hand it to a pharmacy worker (not the pharmacist) who tells me how long it is likely to take. If it's five minutes, I hang around and wait, if it's half an hour they give me a collection ticket and I'll find something else to do and come back later.
I go to the pharmacy vending machine, write the date and sign the prescription form. I mess about for a little while logging into the system (assuming I'm at a height where I can see the screen, and have a level of vision which allows me to see and use a touch-screen interface). Then I put my prescription into a special envelope (assuming there's nothing wrong with my hands)and post it into the little slot. The machine prints off a collection ticket telling me how long I will have to wait.

So far, the machine is taking longer. But what happens next is even better - and it ensures that the wait will never be as short as five minutes. Let's assume my waiting time is 30 minutes and I've wandered off...

The pharmacy assistant places my prescription at the back of a prescriptions box. The pharmacist himself is taking prescriptions from the front and dealing with them one by one. Eventually he gets to mine. He enters my prescriptions into the computer, to make sure none of them clash (this extra layer of checking by a fresh person and a separate computer is why GPs don't tend to give out drugs directly), measures out the drugs, puts them into a paper bag, seals it with a label with my name and NHS number printed on it, and places it onto a shelf which I believe is organised alphabetically for last name.
The pharmacist at the back of the machine - yes, the machine is dependent on a human being at the back of it - retrieves my special envelope, opens it, and takes out my prescription. He enters my prescriptions into the computer (is this sounding familiar yet?), measures out the drugs, puts them into a plastic baggie with my name and NHS number printed on it, and places this into the machine, which may or may not be organised alphabetically, who knows?

Yes, in true mechanical Turk style, there's still an actual qualified pharmacist doing all the actual work. The machine is just a glorified drop-box. So far the processing system is no more automated than it's been for the last ten years or so. They've just added an extra layer of ID-checking that's going to make it difficult for shorter people, people using wheelchairs, people who have trouble with their hands, people who can't see or use touch-screens, and people who are too ill to come out to collect prescriptions and have to send a friend or assistant. I bet the thing talks as well, just to exclude those with impaired hearing/auditory processing too - they might as well try and get the full house.

Anyway, half an hour or more passes and I come back to the pharmacy...

I confirm my name to the pharmacy assistant. They retrieve my bag of drugs from the shelf of prepared prescriptions, ask me to confirm my address and date of birth, and hand it over. They will advise me of any clashes (for instance that antibiotics reduce the effectiveness of the contraceptive pill) and then off I go.
I log in to the system again, assuming as before that I am able to do such a thing. The machine retrieves my bag of drugs from the high-tech shelf inside, and pushes it into the collection chamber with a little note telling me of any clashes. I open the collection chamber, retrieve my tablets, and off I go.

So it takes longer and is no more reliable than the current system, even assuming that there are no mechanical or software issues with the machines - self-checkout, anyone? Nevertheless their claim that it will enable people to skip the queues is probably correct, as the sick or disabled people unable to use the machine will still be queuing at the normal pharmacy. It's not even as if they'll save that much on staffing costs, as the machine still requires a pharmacist to do the bulk of the work and presumably an operator to empty, fill and maintain the thing.

I love technology but I really cannot see the point of this one.

Geek/crip crossover

I just know that a lot of the readers of this blog will appreciate today's XKCD, even if they don't already follow it.


Description: A person saying "The sleep deprivation madness worsens. Things seem unreal. Am I even awake? Maybe I'm dreaming."
The person approaches a tree with a squirrel climbing on it. The person says "I'm pretty sure I'm hallucinating this tree. But what if I'm hallucinating that I'm hallucinating and I'm actually totally sane?"
The squirrel replies "Listen. I wouldn't worry about that."

XKCD usually adds an extra comment or punchline as alt-text. Today's is "I'm not listening to you. I mean, what does a SQUIRREL know about mental health?"

I loved this strip on so many levels. It's a perfect depiction of the kind of existential worry that you only encounter when you're sleep-deprived and/or drugged up to the eyeballs, when your grip on reality is slightly fuzzed and you start to ponder the nature of reality... after all, if I am hallucinating, I will be the last person to know that my hallucinations aren't real because they'll originate from my own brain! Maybe I'm hallucinating Steve, or hallucinating the internet...

(That's what usually settles it for me. I could not possibly hallucinate even half the stuff I see online.)

(edit for picture width, although I'm still not sure I've done it right.)

Such Tweet Sorrow - applause

Previous posts:
Such Tweet Sorrow posted on April 12th, 2010.
Indescribable posted on April 18th, 2010.

For never was a tale of more woe,
Than this of Juliet, and her Romeo.

That may be true. But this afternoon, when I told Steve that the five-week Twitter production of Such Tweet Sorrow was finally over, and he jokingly asked "was there a happy ending?" the answer, strangely, was Yes.

I mean, okay, four out of six characters died. But the difference in the medium changed the place where the play ended and therefore the feel of the ending.

If you see Romeo and Juliet on stage or film, you barely have time to wipe your eyes at the end of the suicide scene before you are presented with the Prince's summing-up and a curtain call.

In real-time, however... Juliet drank the sleeping draught on Tuesday night. Romeo found her early on Wednesday morning. For about an hour he agonised over what to do... then his not-so-quick drugs took another hour to work, and all we knew was silence until Juliet awoke. She took half an hour to assess the situation, sent out a heartfelt goodbye to her sister (Jess, the "nurse"), and then it was silence again until Jess found the bodies. Those long silences really took an emotional toll on the involved audience (affectionately known as #teamchorus).

Too upset to be delivering a neat and tidy epilogue, Jess spent the afternoon and evening railing at her father and portraying despair in messages that were chillingly close to those sent by the young lovers before their deaths... followed by... silence. Jess being an altered character, no one knew whether she would be likely to do something drastic. I went to bed on Wednesday night half expecting to hear news that she, too, had killed herself - the relief on Thursday morning when she tweeted complaining of a hangover was immense. Especially since Jess was one of the more likeable characters.

Over the course of the morning, Jess (and the audience!) got to grips with the facts of the deaths with the benefit of a night's sleep. The summing-up was then delivered as dialogue between Jess and the Friar and although there was a sense of loss, there was also a sense of survival and new beginnings. It felt like a positive ending.

Apparently there is a curtain call tomorrow, which I am very much looking forward to. If nothing else, I need to tell Charlotte Wakefield that it's just Juliet I couldn't stand, and that since Juliet is now dead, I no longer bear her any ill will. I might have *ahem* been a little bit aggressive about my dislike of Juliet and I really hope the actress doesn't take it personally.

Was this an accessible performance? For me, yes. Certainly it saved me from having to deal with practical access issues in and around Stratford in order to experience an RSC production (although I still want to do that one day). And the beauty of Twitter is that if you need to sleep or medicate or stretch or rest or throw up, all of the play is right there waiting for you to catch up on when you come back. However, there were a lot of tweets, and I know several people had to drop out on that basis - in many ways it is easier to devote two hours of undivided attention to the play in isolation, than to immerse yourself into a production that has more in common with a role-playing game than a theatre visit.

I will definitely want to be involved in another Twitter-Shakespeare project. A large part of that is because it is a case of "being involved" rather than merely "watching". Accessible interactive theatre in your own home, where you respond to the characters and the characters respond to you - it beats TV.

All that remains is to stand and applaud:

The Cast
@romeo_mo - Romeo Montague - James Barrett
@julietcap16 - Juliet Capulet - Charlotte Wakefield
@LaurenceFriar - Laurence Friar - Geoffrey Newland
@mercuteio - Mercutio - Ben Ashton
@tybalt_cap - Tybalt Capulet - Mark Holgate
@Jess_nurse - Jess "Nurse" Capulet - Lu Corfield

Producer
Charles Hunter

Director
Roxana Silbert

Writers
Bethan Marlow
Tim Wright

All at Such_Tweet, The RSC, Mudlark, 4ip, and Screen WM.

My fellow #suchtweet Groundlings including #teamchorus and #mercutiogroupies

and the mysterious @jago_klepto...

Indescribable

In my last post, I talked about the Twitter event Such Tweet Sorrow, a production of Romeo and Juliet being played out in real time over five weeks.

We're one week in and it's still a really tricky concept to describe. The biggest problem is that first, you have to describe Twitter itself which is still really hard to do for anyone who isn't already using it. Trying to describe the Such Tweet project itself, on top of that, before you can even begin to talk about how much you're enjoying it, what you think about it, how it makes you feel... it's nigh on impossible.

I'll give it a go anyway. I think Such Tweet Sorrow is most like an immersive fantasy game along the lines of Dungeons and Dragons or perhaps Knightmare. A bunch of people improvising within their given character descriptions interact with you; you are supposed to pretend that they really are those characters. Except that it doesn't require special equipment, like-minded friends, pens and paper, or time set aside to play, and it continues 24/7. As a Twitter user, it slots almost unnoticeably into the life which I am already living.

That's the bit that makes it a little disturbing. Due to the circumstances of my life - I am disabled, I work alone from home, I cannot drive and am waiting on a decent wheelchair - most of my interaction does happen online, and as such I do have several good friends (not to mention clients and suppliers) who I have never physically met.

There are also dozens, if not hundreds, of people who I consider to be part of my wider social circle. We're not friends in the sense of having heart-to-heart private conversations about our innermost feelings, but there's some shared interests, some common acquaintances, and we've had a couple of brief direct exchanges - we're friendly even though we're not bosom buddies. This is the area that the Such Tweet cast fall into. The stream of posts about whatever happens to be on their characters' minds - the progress of a football game, a trip to the pub, a crap day at school - is melding seamlessly into all the other incoming tweets about Dr Who, Mad Cap'n Tom's bid for Parliament, current affairs, Naidex 2010, and biscuit preferences. Every so often, I reply to an incoming tweet. Every so often, someone replies to one of my tweets. It's incredibly normal social networking and an outsider with no knowledge of Shakespeare or the Such Tweet project would probably not be able to pick out the fictional characters.

With it all being mixed in, the line between characters and real people gets blurred. I am reacting to the characters' tweets in the same way I would react to those of real people. The most striking example of this for me so far was yesterday, when @laurencefriar sent out a tweet about meeting some "courageous" disabled football supporters. Anyone who knows the Ouchers knows that the best way to get our hackles rising is to start throwing around words like "courage" "brave" and "inspiration" and I simply couldn't help the way it made me feel (ie: angry). I had to seriously remind myself that @laurencefriar is a made-up character who is supposed to be the sort of person who comes out with tripe like that. Then I thought, well, I'm supposed to respond, an emotional response to well-performed characters is entirely permissible and means the actors are doing their job right.

But it's made me start to worry about what's coming. The writers have admitted that they're not observing a religious adherence to Shakespeare's storyline, but it's safe to say that the basics remain in place - which means it's not long to go before there are a couple of violent deaths in my social circle.

If I find myself getting angry about "courageous" then who knows how I'll react to that?

Wednesday

Wednesday is my day off, but today, it really doesn't feel like one.

What I'm about to say is going to sound really daft...

Today I have 3 hours of social activity with my PA and you know what? I almost wish I didn't.

Anybody from Social Services reading this, I said almost, and I'm only referring to today...

You see, I have nothing to do.

Steve and I seem to have some sort of bug or whatever and we're both feeling more run-down than usual. I had to go home early from work on Monday and went straight to bed and stayed there. With an effort, I managed work and knitting on Tuesday, but now I'm really shattered and all I want to do is just crawl back into bed and stay put. This removes all of the more physical activities I might engage in during my three hours of PA time like swimming or bowling.

The weather is miserable, so that removes the outdoorsy activities I enjoy like going for a wander-about in this or that park, maybe having a bit of a picnic somewhere pretty, very enjoyable things even when energy is low that just aren't fun when it's persisting it down.

I tried museums and art galleries but I guess I'm just not that sort of person. I do my best to find it interesting and make dutiful comments about how fascinating it is to find out about (insert museum speciality here) but seriously, I'm either falling asleep, or I'm getting a headache from trying to stoke up an interest and absorb tons of information about something that simply doesn't interest me. It's a bit different when I'm with Steve, because he can get excited about the engineering involved, or at the very least, find stuff to photograph in beautiful or unusual ways, and I can watch him.

I have enough library books to last several weeks, and there's nothing at all that I need to shop for.

As Steve isn't currently working, there aren't any out-and-about jobs that I should be taking care of, because he's tackling that sort of thing as it crops up. Which is great, and I am a million flavours of NOT complaining, but at least when I know I have to post a letter or buy a birthday card or something, it gives me the start of the roll of sticky tape.

Also as Steve isn't currently working, and as I've just splurged a month's worth of my own wages on this shiny new laptop (which I have been slowly getting used to since last night), it's not a good time to head to a shopping mall and spend money on things that I really don't need just for the sake of filling up some time.

But I have these three hours and although there's some flexibility, over the course of a month, my PA is supposed to do and get paid for a minimum of the regular approved number of hours.

So I'm sitting here, really not wanting to DO anything, yet trying to think of some sort of activity to occupy myself and my PA. I feel like I'm obliged to come up with some form of entertainment despite only wanting to sleep. I feel like it's a job.

All I've come up with so far is trying to find a nice cafe and sitting there drinking tea and eating cake and knitting or reading or something. But then I feel like I'm wasting the hours I've been allotted.

Mind the gap

So, over the last few months there's been a bit of a dip in my health, and work isn't getting any easier. Okay, so work isn't meant to be easy - if it was, they wouldn't have to pay people to do it. But this isn't "work knackers me out so much I can't go clubbing," this is more "work knackers me out so much that half the time it's hit-and-miss whether I can manage to have a shower, even with assistance," and that's really taking things too far. Of my daily "spoons", I'm prepared to hand most of them over for work, but I do need a few left for attending to my essential personal care needs, my bits and bobs of housework, my relationship with Steve, my friends and family, and - dare I suggest it? - a little bit of leisure activity beyond lying in bed sporadically knitting or poking at a laptop computer in between waves of pain. And I really should keep a couple of spoons in reserve for emergencies (like unconscious boyfriends, or mornings at the CAB).

For the last few months, I've been spending spoons I don't have, and reclaiming them by using my annual leave for days off work to recover. That's not sustainable. For starters, I don't have that many days of annual leave, and besides, that's not what annual leave is for. My boss, who is very nice, encourages me to take time off sick if I need it and I have taken some sick days, but I don't want to screw over him, the company, or my own sickness record, by taking a paid sick-day every week. But by pushing my limits like this, I am damaging my health in the long and short term. This cannot continue.

Solution: reduce my regular paid hours, for reasons of ill-health - work four short days a week rather than five. My boss is amenable to the idea; however, now there is a new issue. Since I am on a very low hourly rate, dropping this many hours will mean I no longer earn enough to be paying National Insurance.

National Insurance is very important. If you haven't paid enough National Insurance contributions ("the stamp"), you can't get benefits such as Incapacity Benefit or a state pension. When you have a long-term health condition, it's important to keep this safety net in place. If you are unable to work and claiming Incapacity Benefit, your stamp is paid. If I asked my doctor to sign me off as sick, and I stopped work altogether, I would automatically go back onto the rate of Incapacity Benefit which I was on before I started work. My stamp would then be paid and I would be financially "safe".

But I don't want to stop work altogether, and my doctor agrees that I don't need to stop work altogether. I just can't safely continue working this many hours without damaging my health. I fall into a kind of No-Man's-Land. I looked into voluntary National Insurance contributions, but at £8.10 a week that's out of the question - my earnings would be reduced to below-benefits-level because of working less hours, deducting another £8.10 a week on top of that just makes the whole thing silly. Who should I call to help figure this out? Roll call!

My boss continually assured me that as soon as I knew what I needed from them by way of adjustments, he would get it sorted out for me.

My doctor said she didn't know what the rules were - her specialist field is medicine, not employment, tax or welfare - but she assured me that she would support me with whatever I needed and offered that if necessary she would write me a very specific sicknote detailing that while I needed to work reduced hours, it would be detrimental for me to stop work entirely.

The Incapacity Benefit helpline took a while to understand that I didn't want to stop work completely and then told me they would get back to me with an answer (they never did). They also recommended I call the Disability Employment Adviser (DEA) at my local Jobcentre.

The local Jobcentre DEA, who we've met before, didn't even attempt to help me find a solution when she finally deigned to call me back, but gave me an earful about how "Incapacity Benefit is not a lifestyle choice just because you feel like working less." Happily this is the level of supportiveness and understanding that I have learned to expect from her, so after a few minutes I gave up on my efforts to explain that this wasn't about "choice" or about how many hours I "felt like doing", nor about an effort to "boost my income with benefits", and just let it go.

The local Jobcentre Incapacity advisor said much the same.
"You can work less hours and make voluntary NI contributions."
"But if I work less hours, I will have less money, and not be able to afford NI contributions."
"You can claim Tax Credits if you are poor."
"No, you can't claim Tax Credits if you work less than 16 hours a week."
"oh yes... well, your partner can claim Tax Credits on the basis that he has a low income and a dependent with a long-term health problem."
"My partner's a contractor, we'd have to fill in a new set of forms every week. Besides, it's not that we're poor as a household. It's that I want to pay my own way. I want independence, not to have to rely on him for handouts."
"Benefits isn't independence. Work is independence."
"But I'll be better off on Incapacity Benefit."
"I never said that..."

The CAB told me to contact the doctor, the IB helpline and the DEA at the local Jobcentre. When I said "done that" they were pretty much out of ideas and that I probably had no option but to give up work entirely. I told them I was waiting for a call back from Remploy. They said that was my best bet, then. Oh good.

The bloke from Remploy suggested that if I got back onto Incapacity Benefit, then I would be allowed to do Permitted Work. People doing Permitted Work keep their IB, and can work up to 16 hours and keep up to £88 of their earnings each week. But except in special cases, this is only for six months (after which you either go to full-time, or stop work completely).

I asked if there was a route that was more 'sustaining employment' than 'starting employment'. He told me that New Deal for Disabled People (NDDP) is being phased out and replaced by something called Pathways to Work. Pathways to Work have been active in my local area for about a month via a private company called Working Links. According to my Remploy chap, the staff at Working Links are fairly new to the game (obviously, since they've only been here for a month) and they took over a week to get an answer to him regarding my situation. The answer was that eligibility for help from Pathways to Work is dependent on having been on Incapacity Benefit for the previous 13 weeks. Which I haven't been. I've been working. So I can't have any help, unless I'm prepared to spend a quarter of a year being completely unemployed again and then hope that I can get my job back.

That's not helpful.

The biggest help so far has come from my boss and the company accountant. We've worked out the minimum number of hours I need to work to retain my NI contributions and that is how many hours I will be working as of this week. We've had to tweak a bit, basically from now on I will only be going in four days a week (giving me Wednesdays to recuperate as well as Saturdays and Sundays), but working an extra half-hour on those days. We'll have to see how well it goes. It's still more hours than my doctor and I think I really should be doing but at this stage it's better than completely giving up work.

Here's my options.

Option one: work 17.5 hours a week. National Insurance contributions paid. Take-home pay of about £88 a week, after tax, NI, transport costs etc. Working more hours than my doctor thinks I should. Precious few 'spoons' left.

Option two: work 12 hours a week. Take-home pay of about £57 a week after voluntary NI and transport costs. About the right number of hours work for my current state of health, and enough spoons left over to attend to basic daily needs (eg mountain-climbing: no, grocery shopping: yes).
Edit: I have been informed in the comments that voluntary NI counts towards one's pension, but is not counted for an Incapacity Benefit claim.

Option three: stop work and go back on IB. National Insurance contributions paid. Take-home pay of about £85 a week. All of my time and spoons to myself. However, no colleagues to chat to, no work goals to accomplish, no acceptable answer to the question "so, what do you do for a living?" and precious little self-respect.

What would you do?

A green thing

Georgette the Courgette
Originally uploaded by girl_of_bats

Ladies and gentlemen, meet Georgette the Courgette. Georgette has been given to me by my lovely friend Mandy of the Tuesday knitters. As you will see from this post, Mandy is quite the gardener.

I am not.

I wasn't sure how to respond last night when I was offered a courgette plant. In retrospect, I should have come out with something slightly less blunt than my chosen "what am I supposed to do with this, apart from kill it?" Apparently it's really easy, all I have to do is "pot it on" (wtf?) and "feed it" (bbq?) and when it produces edible fruit, cook it and eat it (lol). The offer turned into insistence and next thing I knew, Steve was driving me home with this plant on my lap.

I really am more Margo than Barbara. Even if I had the physical capacity to dig a garden, I'd still be lacking the inclination. I will do my best with Georgette (the internet has already indicated that courgettes are also known as Zucchini, and that they are amongst the easiest vegetables to cultivate, which is promising) but I suggest that no one holds their breath for an invite to share home-grown dinner with me any time soon.

Love is...

I had a tough time getting to sleep last night and went a bit feverish for a while, but eventually it wore off. Steve was fussing a bit, and the following conversation happened...

STEVE: Are you warm enough? Do you want more duvet? Do you want all the duvet?
ME: I'm fine, I only want half the duvet. *evil grin* well, maybe 60%.
STEVE: Ah, a marital half, I see.
Steve pushes aside the duvet and places a pillow over his arm and shoulder.
ME: What on earth are you doing?
STEVE: Shed.

Settling In

So, I've been here at Steve's house for about a week now. Technically it is also my home too now, but I'm still having trouble getting my head around that. My clothes are all hung and folded in my designated wardrobe, my makeup and toiletries are on the dressing table, a couple of my family photos are stuck to the fridge, my shoes are lined up by the door, I've even had one or two bits of post arrive addressed to me here. But it still feels very much like Steve's House. If all of my stuff was removed from it, the difference would not be noticeable.

Next week, Steve and his friend should be going in a van to get the rest of my stuff from the flat, like my bed, my sofa, my boxes of books and so on. I'm hoping that having my things here might make Steve's House feel more like My Home too, but at the moment there's nowhere to put any of it. Hopefully by next week we'll have cleared enough space at one end of the lounge so that we can stack up my stuff indoors where at least it won't get rained on... but to me there doesn't seem much difference between having my bits and pieces packed up in a load of boxes at one end of one room in the same house I sleep in, and having my bits and pieces packed up in a load of boxes a couple of hundred miles away. I want books on shelves and ornaments on windowsills, you know?

Sorry this post sounds so negative. I am happy, I am glad I've moved, and I am sure everything will get sorted out. I'm just also intensely tired and sore, which in turn is making me irritable. I'm at that point that most readers will probably identify with from their own long or short-term spells of illness: the bit where there's SO much that needs to be done, but you have to push and push and push yourself just to cover the minimum activities, and pushing yourself becomes an exhausting activity in itself. But there's so much that's important so you keep pushing just as long as you can stand on two legs and when you fall, you rest on the floor, as you are, trying to figure out what things you can usefully do while crawling... On top of which, the "minimum" here and now is very different to the minimum, say, a month ago at the flat. There are a number of things that have to be sorted out ASAP, some mountainous things which need to be chipped away at steadily if any sort of dent is to be made, and other things which aren't that urgent or daunting but are accumulating at an alarming rate.

Happily, one of the things which I have classified as "important" is an attempt at a social life. I went to see my friend Carie on Sunday, and I went to the knitting group at Web of Wool on Tuesday. I had a great time on both these occasions. I have finally finished giving myself blue fingers with Littlun's Jumper (just waiting for that to dry so that I can finish sewing it together) and I've made a start on my next project, which is this lovely pair of mitts, slightly modified for my stepdad. Everyone was very helpful as usual - especially Carie, for suggesting and discussing how to modify the particular pattern, and the ever-patient Anna (who owns Web of Wool) who rescued me when I had a brain-blank and gazed at my cast-on stitches for the mitt for several minutes before saying in a small voice "I've forgotten how to knit in the round." Not a laugh, not a snigger, just a gentle reminder and then my brain clicked in again and everything was fine.

Okay. Not a dazzling social calendar there. But it's still Getting Out and Seeing People and Doing Things, and in my own right rather than as Steve's hanger-on.

Also on the plus side, I am enjoying Cuddles On Tap, as well as copious provision of tea and chocolate. It's also really nice having all of my clothes in one place, rather than opening the wardrobe and realising that the top I want to wear is in a different county.

I'm sure things will get a lot more normal soon enough.

That explains a lot

I had a doctor's appointment the other day, and happily, it was Dr W, my GP of many years, just back from her maternity leave. The whole DLA, GP on leave, locum doctor who wouldn't listen to me thing has finally become much, much more clear.

(Brief recap for any new readers: earlier this year I got turned down for half my disability benefit largely on the basis of a report by Dr M, a locum who was covering the maternity leave of Dr W. This baffled and upset me as Dr W has always supported my benefit claim - it was her who insisted I stop work. Dr M reported that I suffer from depression, and that I have no difficulty doing many everyday tasks. This is inaccurate.)

It boils down to: Dr W is an extremely good GP. However, she would be a rubbish data entry clerk.

If you were to read the actual notes that Dr W has written about me over the last couple of years, they are covered in terms like "ME", "Chronic Fatigue Syndrome", "Post-Viral Fatigue Syndrome" and so on. They describe problems I have and how I overcome them, medications that have been tried and the effects they had, how I got on at the specialist ME/CFS clinic, everything you could want to know. You would see copies of the sicknotes with "Chronic Fatigue Syndrome" written large and clear, right up to the date when the DWP decided I didn't need to submit sicknotes any more.

If, however, you were only to glance at the front page of my computerised medical notes, you would have seen:

"Current ongoing conditions: none"

You would also see a note from the late 1990s suggesting I should be monitored for symptoms of depression and anxiety. The significantly more recent psychiatrist's letter giving me a mental health all-clear, is jumbled up with the reports from every other investigation into the possible causes of my illness that I underwent at that time - psychiatrist, neurologist, physiotherapist, and probably the butcher, baker and candlestick maker for good measure. You wouldn't see it unless you hunted for it.

Add to this, that I am not one of "those" patients, who marches off to the doctor every couple of weeks clutching an article about some revolutionary new cure or treatment or research. Since the Incapacity Benefit people decided I didn't have to provide sicknotes any more, I haven't actually been to see my GP about the whole ME thing, I've just turned up when I start oozing. Okay, so my tendency to get the sort of tonsillitis or ear infection that makes a practised GP recoil in horror and begin writing the scrip for antibiotics before they've even sat back down is because of the ME, but that's beside the point. If you look at the summaries of my recent visits on the notes, they're nothing to do with the ME.

So, let's look at my encounters with Dr M from a more sympathetic point of view.

A patient wobbles slowly into the consulting room, leaning on a walking stick and pulling faces. She gasps as she sits down, and explains she has come to see you about an ear infection. You look in her ear and sure enough, it's gunky. You look at her throat and that doesn't look too healthy either. You ask about other symptoms and she says that although she's having a bit more difficulty with certain things, it's just like an extra helping of her normal symptoms.

You quickly look at the notes on the screen. No ongoing conditions, the last thing she was here for was a throat infection, what's going on? What "normal symptoms"? What's with the stick? You ask what she means and she looks at you a bit funny before saying "the ME, or CFS, or whatever you want to call it." You spot a flag telling you to monitor her for mental health problems. Gently you ask a couple more questions. The patient says she's been like this for a couple of years, and no longer has a job. You can't quite make up your mind whether she's actually ill, or if she's a benefit scrounger, or if she's under some kind of delusion that she suffers a physical illness - she seems quite certain that it should be on her notes somewhere - but right now it's not terribly important. She has come here with an ear infection, she very obviously HAS an ear infection, so let's treat that and leave the rest for another day. Then, when you think you're home free, she tells you her benefit is being reviewed and that you may get a letter through asking for a GP's report. Great.


This also explains why Dr M was kind of obstructive when I asked to see my medical records. It could be psychologically damaging for a delusional person to read that their family GP thinks that they are delusional...

Dr W has of course apologised and corrected the front page. She's also made sure to put in plenty of information in the notes for our recent consultation a couple of days ago that might be important for whatever new doctor I get in Leamington - basically making sure the relevant details are at the top for a new GP. Yes, I realise there is a possibility that I am delusional and she is humouring me, or that I hallucinated the whole thing. But that just gets too metaphysical. I shall stick with the logic that, if the psychiatrists don't want to try and treat me, or even put me on a waiting list, and I'm not on psychiatric medication, and I'm not crying all the time, then I'm okay in that respect.


In other news... Stage One of the move has gone well. I will write more about it another time. For now, suffice to say that I am in one piece, partially unpacked, and very happy.

No worries

With the DLA crud dealt with, I've been just taking it easy, relaxing, trying to recoup some energy, that sort of thing. You remember I said it's been like dealing with an exam? Well, this is that big knackered empty feeling afterwards except the knackered part is multiplied by "I have long-term lurgy and have been overdoing it".

So there's been lots of blank time, just lying still and not thinking about anything at all. And there's been a lot of gently vegetating in front of the computer. Well, in the vicinity of the computer. In fact I've spent a good deal of time gazing at the patterns of light on a can of furniture polish that's on my desk. And watching my Sunshine Buddy - very soothing.

I've been particularly enjoying watching a lot of stuff on youtube by Tripod, a trio of comedy musicians from Australia. Particular favourites include Gonna Make You Happy for all the other Girlfriends of Geeks out there (you have to listen at least until 1:08, the whole thing is 3:52), Ghost Ship which is just very silly indeed, or this relaxing little bit of politics.

Those who know me will not be surprised to hear that my favourite is Scod, the one with the dark hair and glasses. Me and geeks with dark hair and glasses, it's just this thing and there seems to be very little I can do about it. Don't worry though Steve, you don't need to learn guitar.

Knittingwise, I've got my next project lined up - a hat for Sister Dearest - and she has picked a pattern and told me what colour she wants. I've got the needles and I'm just waiting on the wool. For some crazy reason, charcoal-coloured 100% merino wool yarn is tricky to get hold of in June. She wants black flowers embroidered on it. So if anyone has a handy end-of-a-ball of black yarn in their stash that they want rid of, I have a use for it. Also, I would like to flag my utter amazement at the knitting dedication of Dominocat.

Finally, it just wouldn't be a Saturday if I hadn't recieved some rubbish from the Department of Work and Pensions that requires action or query but that I won't be able to do anything about until Monday morning.

Luckily it's not a "worry" thing. There's a letter from the DLA department reminding me that I had said I had additional information to submit for my reconsideration and that if this is the case, I must post it to them ASAP (hurrah!) and one from I'm not sure what department, but not DLA, that starts with "thank you for informing us of your recent change in circumstance" which, ???!?!? because I haven't actually informed them of any changes, being as how nothing has, you know, CHANGED as yet. I hope it's just a pre-emptive thing because my original award of DLA expires on August 8th. If it is, that's a relief, because it means there was actually a department that were on the ball and I don't have to go see them on August 7th and say "ummmm...", but it is always as well to check these things, and write down the name of the person who explains it to you.

Internet Addiction?

On May 9th I mentioned a number of half-written posts I had and asked which ones I should make into full posts. The answer seemed to be "all of them, why not?" so here's the first. I'm not entirely happy with it, but it's the most complete one of the lot, and I'm not having a great time for concentration at the moment so bah, it'll do.


While aimlessly reading through the BBC Magazine Monitor's "100 things we didn't know last year", I came across this article.

Apparently more than one in eight adults in the (US) study were internet addicts. Signs of addiction include:
- Finding it hard to stay away from the Internet for several days at a time
- Often staying online longer than intended
- Having seen a need "at some point" to cut down on Internet use
- Attempting to conceal Internet use
- Using the Internet to escape problems or "relieve negative mood"
- Relationships suffering from excessive Internet use

Lists like this cover most forms of addiction. Just read the list above substituting "alcohol" or "heroin" or "gambling" or "bingeing on chocolate" for "Internet".

For the record, I freely admit to finding it hard to stay away from the internet for more than a day or two, and I come online to "relieve negative mood" - it's something I enjoy doing, in the same way as I enjoy a nice bath, or a cuppa with a friend. I'm "online" most of the time, most days, but while the computer and msn and so on are "online" I'm quite probably curled up on the sofa snoozing, or filling out a form, or tidying up around the flat. I do my computer-stuff in many short bursts rather than one long stint. I've never tried to conceal my usage, and I'm pretty certain my relationships haven't suffered - quite the opposite! I'm hazy on the idea of "non-essential use". If I order groceries online because it's easier for me than going to a shop, is that essential or not? If Steve plays an online game for half an hour to relax after a crappy day at work, is his relaxation essential? Is reading the news essential? Is contact with long-distance relatives essential?

Even if we get an idea of what is essential use and what is non-essential, but reasonable use, we then still end up on the same old cycle of trying to figure out at which point the use is defined as an addiction. Where's the line that makes it a problem, or possibly even a pathology?

It may partly depend on what the activity is. I know many people who like to read books. They wouldn't want to spend several days without reading a book. They become immersed in a book at bedtime and then realise it's 4am and they've been reading much longer than intended. They have realised they have more books than shelf-space and decided to get rid of a few. They read books to "escape from reality" or because it relaxes them, or cheers them up. But no one would dream of telling them they are addicts, or that they have a problem, or that they must empty their houses of books and from now on they can only read road signs. You just don't do that with Reading Books. Is it reasonable to do it with Using the Internet? Writing diaries is another one. If Samuel Pepys was alive today and writing his memoirs in daily blog form, would he be castigated as an internet addict with "compulsive behaviour issues" as these researchers put it?

It also depends to what extent the activity is taken. For instance, it is normal, even desirable behaviour to keep one's home clean. I also know people who like to take pride in keeping their houses neat and clean. Rather than "oh no, housework, it's got to be done but I wish I didn't have to do it," they actually quite enjoy tidying a room, putting things in the proper places, polishing the surfaces, fluffing the cushions and looking at the results with a sense of deep satisfaction. Then there are those who feel distinctly uncomfortable in an untidy room - people who come to your house for a cup of tea and can't help themselves from lining up your remote controls in order of size on the coffee table, or even say "I'll just rinse my cup out," and then start washing up your breakfast things from that morning. And then there are those who compulsively and constantly deep-clean everything. A friend of mine got burns on her legs at someone's house because she hadn't been warned to wipe the bleach off the toilet seat before sitting down - the householder in question reapplied the bleach several times a day. Few people would argue a statement that this last example shows signs of a problem. But at which point along the spectrum does the "problem" status apply?

I think perhaps the line between a hobby or interest, and an addiction, is when it has a real impact on other people. I'm having trouble imagining someone shoplifting their food and mugging people so that they can pay their line rental or get another couple of gig of bandwidth... but I can, for instance, imagine a child with a full nappy and an empty bottle sticking their fingers in sockets while their parent is at the other end of the house having "just one more f5", so maybe internet addiction isn't such an outlandish concept.

Hopefully someone will prod me before I get too sucked in.

A very short post

This made me very, very, very happy.

The weather seems to have given me a bit of a knock so I haven't been about too much. I've been spending far more time than is healthy lying down, wide awake, feverish and full of painkillers, with my mind wandering.

The chain of thought started with Terry Pratchett's Hogfather, which was dramatised on SkyOne last Christmas and which I recently bought on DVD. From there we went to the Coca-Cola Christmas adverts.

I also started thinking about the type of adverts that take a well-known song, and then put their own lyrics on it, like this Weetabix advert.

The next stage was how in school, up until I was about 13, we had to sing hymns in assembly each day, as well as any amount of carol concerts. Lots of songs we sang had "alternative" lyrics. "While sheperds washed their socks by night", and "we three kings of orient are trying to light a rubber cigar", "good king Wenceslas looked out, on the Feast of Stephen, a snowball hit him on the snout and made it all uneven" and hundreds of others I'm sure you can remember.

And from THERE, final leap, I fell into a sort of half-sleep full of people in a church. A priest at the front burbling a sermon, congregation variously dozing, or fidgeting, or looking disapprovingly at those who were dozing or fidgeting. The bit where the priest says something and the congregation answer in a zombie monotone.
"May the Lord be with you"
"A n d a l s o w i t h y o u"
"Let us lift up our hearts"
"w e l i f t t h e m u p t o t h e L o r d"
(Catholic primary school, this crud is etched on my brain)
The organ plays a chord, people cough and shuffle to their feet. Upon which they launch into This Bloody Frosties Advert. Complete with jumping up and down.

My mind scares me sometimes.


Oh, and as this post has far too many YouTube links in it already, I may as well stick in another one. Ladies and gentlemen, I give you... Nintendo Opera.

Walking Stick?

There's a restaurant here that I like to go to. It's quiet, they do lovely food, have generally good service, aren't stupidly expensive, and manage to be family-friendly while not being a kiddie restaurant. The layout is of lots of different "rooms", up and down various flights of stairs, but they've made the effort with accessibility - the main entrance and bar (and the toilets) are ground-floor and totally accessible, and a combination of Stannah stairlifts and ramps/level access fire escapes mean that while a wheelchair user can't access every table in the place, they can use most of them. Usually they ask if I can manage the stairs and make an effort to seat us at a table with as few stairs to contend with as possible. Yesterday, Pip had a few hours without the Littlun, so we decided to go there for a spot of lunch.

Mary and Pip enter the restaurant, and approach the reception desk.

PIP: Good afternoon, could we have a table for two, please?

The waitress stands in silence for a few seconds, staring at Mary and Pip in utter shock or possibly disbelief, before turning and running off up the stairs.

PIP: Was it something I said?
MARY: Maybe "table for two" has become a slang term for something unspeakable.
PIP: (peeking up the stairs) I hope she's okay.

Enter the waitress, slowly making her way down the stairs with much trepidation. She stares at Mary and Pip in silence.

PIP: Is everything alright?

The waitress continues to stand silently. Mary and Pip start looking about for another staff member, to alert them that their colleague may be unwell.

WAITRESS: (slowly, pointing) Walking stick!
(pause)
MARY: (baffled) Yes, yes it is.
WAITRESS: (pointing) Out there. Fire door.
MARY: Excuse me?
WAITRESS: Stairs!
PIP: You want us to go in the fire door out there?
The waitress nods and without waiting for a response, runs off up the stairs. Mary and Pip exchange a glance, shrug, and make their way back outside, round to the fire door, which is open, and into the restaurant, where the waitress is beaming proudly by a table with two menus on it.

Strangely - or perhaps not - once we were seated, the waitress had a full and complete grasp of conversational English, albeit with a lifelong Suffolk accent.