1 in 200

I am still breastfeeding Jamie at 18 months old. First thing in the morning, last thing at night, during the day if he requests it.

This shocks some people, because in the UK it's a very unusual thing to do. Which is odd, because it's exactly the recommended path according to the NHS and the World Health Organisation. Exclusive breastfeeding to 6 months, then breastfeeding alongside other foods and drinks, ideally until at least 2 years, longer if mother and child both want to.

And yet.

The trouble with being 1 in 200 this way is that there's 199 mums who believe you're criticising their choices. So I get all English about it and make sure to validate their choices. I nod and smile and agree that whatever difficulties they faced were insurmountable, to the point where it was barely a choice at all. I imply that in their situation I would have likely made the same choice. I make cracks about how I'm only breastfeeding because I'm too lazy to sterilise bottles.

But a bit of me rages inside. I, too, had some difficulty getting started (I recommend the NCT Breastfeeding Helpline 0300 330 0771, and remember to use a phone that you can put on loudspeaker). I, too, would like to have a day off. I'd like my partner to be able to do the bedtime routine once in a while. I've made medication choices based on breastfeeding compatibility to the detriment of my own health. I've ridden out two bouts of mastitis during which, obviously, I had to look after Jamie even while hallucinating with fever. I've been bitten, basically once per tooth. Breastfeeding might be natural but it's not the soft option. I've worked hard at it and committed to sustaining it because every resource not sponsored by a formula company says it's the best and right and correct and most beneficial thing to do for my child.

It really upsets me that I then end up having to defend that choice, that effort. I've had people suggest that I do it because I want to delay Jamie's development. Or because I'm too possessive of him and don't want to let anyone else care for him. Or because it makes me feel important. Or because I don't know any other way to calm him down. Or because I'm an exhibitionist. Then we have the people who aren't so explicit about it, the double-takes, the "you're still breastfeeding him?!?" remarks, the queries about when I'm going to stop. It all grinds me down.

I'm not expecting a cookie - the cookie is knowing I'm doing my best for Jamie, and Steve gives me a lot of encouragement too - but less criticism and incredulity would be so nice.

An Update

In my last few posts, I talked about three major obstacles to the baby preparations.

One was the difficulties of getting assessed for a suitable wheelchair. After my last post, a number of people gave me details of companies and charities who had been useful to them. Sadly when I followed up these leads, some weren't able to help, and others were unhelpful by choice, showing me the chairs they wanted to sell rather than the chairs that would meet my needs, and calling it an assessment.

Thankfully, this turned out to be the easiest situation to resolve. The experiences with the "assessors" convinced me that I might as well ditch my fear that going into a mobility showroom would leave me prey to unscrupulous salespeople. I called a local showroom, explained my needs, and arranged an appointment. When I arrived, the salesman had several chairs lined up that did meet my specifications. After a bit more discussion and measuring, I was having a test ride, which included seeing if my favourite one would fit in the car. It did. The salesman then encouraged us to take our time, go home, have a think, and phone him on Monday if we wanted to buy it... and a brand-new one was delivered by him to our house at the end of that week.

I'm gradually getting used to it and I think it's going to meet my needs well.

There was Social Services, where "my" social worker had gone off sick less than three months into my pregnancy. The refusal of Warwickshire Social Services to transfer my case to a different social worker "because she'll be back soon" meant that I had no support at all until my pregnancy was past the half-way point, at which stage it was conceded that the Duty Social Worker team could help out with my case if they had time. I saw a Duty Social Worker at 26 weeks pregnant, but at the time of my last post, I wasn't confident that it had gone well.

At 32 weeks and with my assessment still waiting to be seen by the decision makers, my Health Visitor decided to see if she could intervene in any way. She was told that "my" original social worker was due back in the office any day and would definitely call her back as a matter of urgency. Except of course that this was every bit as much a lie as it had been every time I'd been fobbed off with it during the Spring.

Then at 33 weeks pregnant, for reasons it's probably best not to speculate on, I was officially reassigned to the proper caseload of the social worker who had been the Duty Social Worker who had seen me almost two months earlier. A few days later, I was given a date for my caesarean section which will be at about 39 weeks. I'm not sure if this deadline helped - at 35 weeks pregnant, with four weeks of pregnancy remaining, I think my assessment for additional support during pregnancy was very nearly ready to be submitted to the panel...

On the bright side, the Health Visitor and the no-longer-duty Social Worker are liaising directly now, and I think the midwife might be as well.

Which means I'm free to worry about the stairlift. At the time of my last post, after the delays caused by the absent social worker situation, we had sped through the assessment process thanks to a helpful and super-efficient OT and were awaiting a quote, which arrived, as it was supposed to, just before 28 weeks of pregnancy.

We signed, wrote a cheque for a deposit of over £2,000, and got it back to them next-day. According to the contract, this meant installation would happen within 6-8 weeks - so at the very latest, before 36 weeks of pregnancy (or "well before the end of September" for those of you who prefer a traditional calendar). It was cutting it fine, but it would be okay.

We were quite surprised to then be offered an installation date in the middle of October, or 39 weeks of pregnancy.

There were two problems with that.

One was that it was 3 weeks over the maximum 8 weeks promised in the contract, which really is not good enough when you are forking over five thousand pounds for essential equipment. I signed that contract on the understanding that my stairlift would be installed within the timeframe specified in the contract.

The other was that the date they were suggesting was the actual date for which my caesarean is booked.

After a lot of phone calls (which is always me phoning them, because their inability to stick to their own suggested timescales extends to calling back when they say they will), they have managed to rearrange for installation to happen in the first week of October. This is still breaching the contract - but I don't have the choice to make a big deal about that, because I need a stairlift in place before the baby gets here, and it is too late to get one from a different provider.

I am in my final month of pregnancy. I am supposed to be thinking nice, nurturing thoughts, and doing gentle exercises, and nesting. If I was at work and experiencing this kind of stress, I would be advised to start my maternity leave now. But there's no maternity leave from this situation.

Bad Sexual Etiquette

Warning: this post is about rape issues.

If you are affected by rape issues you may wish to visit the Rape Crisis website (England and Wales).




It doesn't really matter who he is. Maybe he's your boyfriend, of weeks or months or years. Perhaps he's the old schoolfriend who you met again a few hours ago downstairs at the party. Perhaps he's a "friend-with-benefits" who you've known for years. Maybe he's your husband. Maybe he's the man you don't want your husband to find out about. Maybe you've had sex with him before, maybe not.

It doesn't matter. He's a nice guy. You have no reason to think badly of him. Your taste in men is surely not that bad. You've dumped plenty of idiots and refused to even consider dating plenty more. This one has passed the filters, and you want to have sex with him.

That said, you want to use a condom. Again, it really doesn't matter what your reasons are. Maybe you want to avoid disease. Probably, you don't want to risk getting pregnant. Perhaps you're feeling aware that it would, for whatever reason, be awkward for you to try and get hold of the morning-after pill. Maybe you're on the everyday pill but you missed one, or are just wanting that extra layer of reassurance.

So you're kissing him, and both of you are enjoying it, and you want to have sex, but you slam on the brakes and one way or another you raise The Condom Question. And despite the hormones and desires and excitement, you refuse to go any further until he's agreed and there's a reassuring square foil packet sitting ready on the bedside table (or the dashboard, or the refreshments trolley in the company boardroom, hey, whatever works for you).

Then, with gleeful abandon, the brakes, and the rest of your clothes, can start coming off. You're excited. You're aroused. You are spread out, relaxed, enjoying all sorts of foreplay and eager to have wonderful, enthusiastically consensual, penetrative sex.

And he's between your legs
Oh!
kissing his way up your body
amazing kisses
making you feel fantastic
and suddenly
no, he can't be
he's pushing into you
he wouldn't
and the little foil packet is still sitting there, unopened.

"No!" you say, and your voice sounds like it's coming from a long way away, so you try again, "no, we need to use a condom..."

"It's okay," he says, his familiar, nice-guy face smiling over you.

"No, it's not okay!" you shout? whisper? not even sure any more and you try to push him away but your muscles won't work properly even as he caresses your useless spaghetti arms and gently, almost lovingly, but quite firmly enough, holds them down over your head, and tells you to relax I would relax if you would just put the bloody condom on because he's not going to come in you.

As if that makes much difference. You were awake in sex-ed class, you had it drilled into you that pregnancy and disease are possible from pre-ejaculate. You're certain that at this point in your life you don't want to deal with the mental and physical strain of a pregnancy, or an abortion, or childbirth, or raising a child, or giving a child up for adoption. This is not a risk you wanted to take.

But "no" hasn't worked and I can't move and my mind is whirling too much to give a lecture on sexual health issues...

His face is still over yours. He's still smiling, still kissing you, mistaking your panic for pleasure. He tells you that he wants to feel you orgasm like this orgasm? I'm not even turned on any more and with a shiver you realise that if you can't physically force him off you then the only remaining option is to fake it, get it over with, quickly as possible, minimise the risk, get him off me.

So you breathe, and you try to ignore the little voice that's screaming getoffme getoffme getoffme and you say oh, mmm, yes, NO! and flex your Kegel muscles as best you can until oh thank god he's convinced, and he withdraws, and the smile on his face tells you that your faked orgasm has reassured him that you actually really enjoyed that experience when in fact you're lying there still and boneless and in shock, trying to process what's happened.

He didn't come. Do I still need the morning after pill? Would I even be able to get hold of it without admitting what's just happened? Am I prepared to take the risk? How do I arrange a sexual health screening without anyone finding out? What's an abortion actually like? First things first, what's the date, how long until my next- WHAT THE FUCK IS HAPPENING NOW?

What is happening now is that he's pushing into you again, and this time he's wearing the condom, and you are expected to be grateful for this can't be happening, can't be happening, can't be happening you feel sick and your stomach muscles clench and you gasp for breath and this is also interpreted as excitement and finally he comes and he withdraws and this time you practically leap off the bed and get your clothes back on and you're out of the room in ten seconds flat even though your arms and legs still aren't quite doing what they're told.

He follows you. He's the clothed, smiling man who not half an hour previously was an entirely nice chap, talking to you and making you smile and showering you with affection.

He doesn't think he's a rapist.

Do you?

Disabled, not dead

Yesterday, my Twitter feed was alight with people being gobsmacked by the content of Panorama's so-called "investigation" into benefit fraud. Interestingly, I understand that neither of the major culprits "investigated" and plastered across the BBC's prime viewing have actually been charged with benefit fraud. More worryingly, it appears that several of the activities the "investigator" took umbrage with weren't actually activities that would preclude a benefit claim...

I didn't watch the programme, in the end. Being, y'know, disabled and all, watching lengthy TV programmes late in the evening isn't something I'm very good at. I was going to catch it on iPlayer but have since decided that it will only upset me. So I want to make clear that this post is not a complaint about the Panorama programme because complaining about a programme I didn't watch and don't intend to watch seems rather ridiculous.

But I am qualified to comment on some of the urban myths surrounding disability, because they do impact me and my friends on a pretty regular basis. Facts and figures unless stated otherwise are drawn from HM Govt's Office for Disability Issues overview of official disability statistics, which can be found here.

Myth #1: Disabled people claiming benefits do not work.
In fact, about 48% of disabled people are employed (although this is compared to 78% of non-disabled people). Disability Living Allowance (DLA) is not means-tested and is awarded based on the impact a person's impairments have on certain aspects of their day to day life, such as washing, dressing, cooking, communicating and moving around. Disabled people often incur unavoidable expenses in trying to meet these essential needs, and DLA recognises that it is unfair to attempt to force working families and individuals to try and meet these non-negotiable and unasked-for additional costs out of their earned wages. Some disabled people work and claim Tax Credits, which is another legitimate form of benefit available to working people. And ESA has provision for Permitted Work for people who can only work very limited hours or in a very supported environment.*

Myth #2: Disabled people are obliged to be poor, and may not own assets.
While "a substantially higher proportion of individuals who live in families with disabled members live in poverty, compared to individuals who live in families where no one is disabled," wealth does not make a family immune to disabling illnesses or injuries. If you own your own home and live in it, then in the long run it's cheaper to let you carry on living there as long as possible than to attempt to rehouse you and have to pay Housing Benefit to you once the capital has evaporated.

Myth #3: Disabled people should not engage in physical activities.
Show me any person with an ongoing long-term physical or mental health condition, and I'll show you a person who has been advised by their medical professionals to take up swimming and/or gardening and/or going to a gym in the hope of staying active and healthy in so far as that's possible. It's always recommended, even if it doesn't get formally funded by the NHS under the guise of physiotherapy. Also: Paralympics, anybody?

Myth #4: Disabled people should not have a good time.
This is the most ridiculous of all - the idea that if a disabled person attends a party, or goes to the pub, or goes shopping, or is seen outdoors laughing with their friends, it's an affront to all right-thinking taxpayers and incontrovertible proof that "there's nothing wrong with him".

We live with our conditions. It's not like being sick and miserable for three days, but it's also not like being sick and miserable for three decades. It's more like being sick and miserable for three months, getting an idea of what's happening, spending three months in a horrible chaotic whirl as you realise your life is changing forever, taking anything from a few months to a few years to grieve and come to terms with what is happening to you, and then... you live. Which means you grab every opportunity you can to have a good time and laugh with your friends, just like any other person. You abandon the "miserable" by the side of the road.** We laugh. So sue us. We're not locked in a box out of sight. We're disabled, not dead.


* This is a gross over-simplification because to properly and fully explain would take another ten blogposts.
** At least until the next time you find yourself and your community under attack in the media.

Deserving

A lot of hoo-ha in the UK press at the moment about disability benefits. The essence of the story is that the government reckon 80,000 claimants who have what they consider "immoral" illnesses like drug/alcohol dependency or obesity are a justification for their plans to chuck about 570,000 genuine claimants off the disability benefits on which they depend.

According to the BBC article, the Prime Minister's position is thus:

The prime minister denied the government was stigmatising people who were genuinely ill but said the public believed recipients should be "people who are incapacitated through no fault of their own".

No fault of their own, what a strange concept. Does the man intend to start assessing not only the practical limitations of a person's condition, but also the degree of fault involved?

He continues:

"But there are some who are on these benefits who do not deserve them and frankly we are not doing our job looking after taxpayers' money if we do not try and make sure these people go to work."

Benefits are not given based on being deserving. They are given based on need. Going to work or not isn't based on being deserving. It's based on ability. An idiot who drove while high/drunk/ill/tired and smashed up his car and his head so badly that neither will ever function again is probably not considered very "deserving", but his needs will be pretty high and he's unlikely to work again. A young fireman who lost a leg while saving a helpless baby from a burning building is about as deserving as they come, but his needs, while substantial, will be easier to adapt for, and with a relatively small amount of equipment and support the chances are he will be able to do some work.

I wonder... if someone were declared Fit For Work despite a serious health condition, and in the course of making the effort to keep up with the Mandatory Work Related Activity requirement of JSA, their condition permanently worsened to the point where even the DWP and ATOS accept that they are too ill to work - would it be their fault for not saying "I can't do this," and risking having their JSA stopped?

Even taking the sort of example that I think the government mean, it's worrying. Let's imagine, for a moment, that we have a claimant, an alcoholic, and that his alcohol dependency didn't evolve as self-medication for a pre-existing but untreated mental health condition. Let's accept the government assumption that he really did skip gleefully out of the careers office at school saying "I've got a better idea, I'll get pished and the taxpayer will take care of me, bwahahahahaha!" Fixed this in your head? Good.

Now we're twenty years down the line, he has no friends and family left apart from other alcoholics, no work history, very few self-care skills, and all the physical and mental effects of long term alcohol abuse, which if you're not too squeamish you can look up for yourself. There are very few jobs that such a person could do, and even fewer employers who would take such a person on. Then what happens?

Cameron's despicable lie is that his ideal outcome involves people with dependency issues being treated and then helped to find jobs. That will never happen. It is far too expensive, and without wishing to sound defeatist, in many cases it's an impossible outcome.

We could put him into a treatment programme - one that isn't dependent on turning up sober (unlikely), and that won't send him back to his bedsit and alcoholic pals to undo all the work that has been done (so we're looking at an open-ended residential placement - unlikely, and extremely expensive). Then once he's sober, he'll be allowed to access NHS treatment for the underlying mental health conditions that will have developed (unlikely and expensive) and the physical damage as well (amazingly expensive). We'll have to hope that during those years - yes, years - the DWP don't choose him as an easy target and put him under so much pressure that he cracks and starts drinking again. Eventually, after many years of intensive treatment, a lot of money, even more hard work, and a dollop of luck on the side, he might be able to re-enter some sort of employment for a few years until he (a) retires, (b) dies of the irreversible physical damage, or (c) falls off the wagon again.

Cynically speaking, and please don't think I'm advocating this, it is in fact cheaper to allow him to quietly drink himself into an early grave without intervention.

Cameron might talk up "treatment" and "employment" but until we see actions to that effect - boosting rather than cutting the support projects* - what he really means by "getting people off disability benefits," is saving money by consigning them to the lower unemployment benefits.

The benefits system is supposed to be the last safety net. It does not provide a luxury lifestyle, it doesn't try to improve matters, it merely attempts to go towards providing what has been defined as the minimum amount of support necessary for that person to live in conditions that can be considered acceptable for a human being. Reducing that support does not propel people into sustainable jobs, it just makes their lives more difficult and in many cases perpetuates their problems, or in a few very sad cases, hastens their deaths.

*Yes, the article speaks of a £580m investment. However, this is from "private and voluntary organisations", eg not the government, and frankly it's a drop in the ocean compared to the cost of effective long-term treatment and support for that many addicts.

slow progress

I was hoping to be able to bounce in here with a post saying that, after all the things which went wrong on Wednesday, everything was back on track and totally fluffy.

Perhaps unsurprisingly, that's not the case. But things are slowly and steadily turning back to positive.

On Thursday morning I got a lift to Shopmobility, who are the nearest vendors trained and approved to carry out work on e-motion wheels. They took the tyre off and showed me the state of the inner-tube (I felt quite embarrassed) and they've ordered in new ones for me. Several friends encouraged me to try bike shops, or order online and do my own inner-tube replacements, but I'm not that keen to invalidate the warranty and insurance just to see if I can save £2 or get it done a day sooner - besides, Shopmobility schemes are worth supporting. I should be whizzing around again some time next week.

A big thing that went well is that I managed to get some affordable coloured envelopes online (from Ideal Envelopes, if anyone's wondering). I ordered them late Wednesday night, they arrived on Friday morning. I spent much of Friday writing out addresses in my Very Best Good Handwriting, and by the time Steve and I went to bed, all but one of them (waiting on a new address) was stamped, sealed, and ready to go. There was a little pang of frustration when I remembered I couldn't just trundle out to the post office with Steve (he's hurt his back and can't push the manual wheelchair either) but instead we drove around to several different post offices until we found one with wobbling-distance parking outside. UK envelopes in the box, overseas envelopes weighed and stamped for airmail by the post office clerk, and then as we went back to the car, a Royal Mail van pulled up to collect. So hopefully soon we'll start getting RSVPs!

Meanwhile, friends on Twitter and on other forums have provided a number of balloon company recommendations, so I've been phoning and emailing to try and get more quotes, and have booked an appointment to see one company next week. Hopefully I'll get something sorted out fairly soon and then everything weddingy will be right back on schedule.

Unfortunately I'm having the sort of day where being a passenger on a drive to a post office this morning wore me right out for the day - I spent most of the afternoon asleep and I'm still in bed typing this. It is therefore with a slight feeling of shame and a huge amount of gratitude that I say thank you to the protesters who marched in London today, including several of the Where's The Benefit posse. I only hope that a difference can still be made. As DavidG put it:

It’s quite simple, Mr. Milliband, we want an alternative strategy. If cuts must be made, we don’t want them to be targeted at those least able to bear them. And that is where the Labour Party is failing us. It was a Labour government that introduced ESA and ATOS screening, it was the Labour government that stood hand in hand with the Heil, the Scum and the Vexpress in demonising those of us on IB and ESA as fraudulent scroungers and under your leadership it is the Labour Party in opposition that is still supporting those policies.

People who voted for the Conservatives knew exactly what kind of ideology they were voting for and are probably very pleased about the cuts that are being made to services for poor people, disabled people, disadvantaged people, young people, and People Who Simply Aren't Our Sort Of People, but let's not pretend that Labour were or would be any better. Our political system is supposed to provide a formal means of opposition within the political system and I think the biggest motivating factor in all these protests is that meaningful opposition, carried out on our behalf by those who are supposed to represent us, is failing to take place as MPs scramble for a slice of the power pie and focus on relaxing the rules and increasing the spend on their own benefits.

Brave vs Stupid

IF you have a painful injury or condition which manifests itself by way of inflammation...

... and IF you see a doctor and the doctor refers you to physiotherapy and advises you to take ibuprofen (a well-used anti-inflammatory medication) while waiting for the physiotherapy appointment.

Take the freaking ibuprofen already.

It is not brave to struggle along without medication.
You will not get a Brave Little Soldier prize for enduring unnecessary pain.
Pain =/= moral superiority.

If you are worried that taking ibuprofen will "mask the pain" and that this will mean you do more than you should and cause yourself more damage... stop when you think it's sensible, rather than waiting until you are experiencing "oh gosh I'm damaging myself further" levels of pain.
It's a bit like how in order to wake up and function at 7am, you go to bed at 11pm, even though you could stay up longer. You don't insist on waiting until you physically cannot keep your eyes open any more or on going without sleep altogether because you think sleep will "mask" your tiredness.

Yes, pain is the body's alarm system to tell you something's not right.
You've acted on that warning by seeing the doctor and getting the physio referral. Enduring further pain is like leaving a burglar alarm blaring even after the thieves have left the scene and the police are on their way - upsetting and pointless.

It is not clever to refuse to even try your doctor's suggestion.
If you really feel you must not and will not take the medication the doctor tells you to, it is ridiculous to neglect to tell your doctor that you are ignoring his/her advice.

Yes, the over-the-counter box says that if symptoms persist you should consult your doctor for proper medical advice.
You already consulted your doctor and were advised to take ibuprofen - that IS proper medical advice.

Yes, long-term use of NSAIDs including ibuprofen can lead to stomach problems.
No, a few weeks until your physiotherapy appointment does not count as "long term".

And finally, if you must be this much of an idiot, don't expect me to be impressed when you tell me!

I'm pretty certain that the person this refers to doesn't read this blog. But I really needed to get it off my chest, and it wasn't possible at the time.

To err is human...

... but if you do it on DWP forms, you can expect a fine.

A £50 fine, to be precise, although that's just a starting figure. It could be as much as £300.

Apparently the point of this fine is to get claimants to take "responsibility" for their claims, because "I have to fill in this form right or I won't have any money for rent, bills or food" doesn't have enough impact on your life to make you take it seriously. Or something.

Leaving aside the class war bit where a bunch of millionaires (who make plenty of "mistakes" in their own benefit claims and consider £50 to be the cost of lunch) are imposing these fines on DWP claimants who are, for obvious reasons, some of the poorest people in the country for whom £50 is two weeks' groceries or more...

I'm reasonably bright. Not exceptionally so, but I have my selection of higher-tier grade GCSEs including English and Maths, I've been able to read and write since before I started primary school, most of the jobs I've held have had some sort of administrative element. I should be as well-equipped as anyone to fill out those forms correctly, and I have a distinct advantage over many claimants who are less academically inclined.

And I have made errors on my claims.

The first one, was when I first got sick and lost my job. Let's set the scene. I'm in my early twenties. I'm sick, so sick I cannot work, and more or less confined to bed so that I can manage the big bursts of effort needed to go out (I haven't yet been taught about pacing). I don't yet know what's wrong with me, so I'm scared. I have no income and the Jobcentre have given me three forms. The biggest one is for Incapacity Benefit. The next biggest is for Housing and Council Tax Benefit. The smallest - which is still some thirty or forty pages - is for Income Support, which I am told is a "safety net" in case my Incapacity claim is rejected.

Bear in mind the reason for my claim was that I was too sick to work in my mostly office-based job. I had something symptomatically akin to 'flu. I was not in a top form-filling state.

I worked on the forms as best I could. By the time I got to the IS one, time was running out, but I did my best and felt quite proud of myself for finishing it all within the deadline.

My mistake? In the Pensions section. Having ticked that no, I was not in receipt of any pensions, I was told to go to the next section of the form. So I skipped over all the questions about what type of pension do you have to the next section of the form, About Other Benefits. What I missed, was that "War Pensions", although tacked onto the end of "Pensions", was in fact a section in its own right - a one-inch strip with the single question are you in receipt of a War Pension and Yes/No tickboxes. The form was sent back to me, red-penned and with a stern letter of admonishment.

I've also made errors on my DLA forms before now, again usually at the level of missing a tickbox, although thankfully I've always caught them before sending.

The BBC article says:

The proposals also reveal that the government assumes there will be very few appeals against these fines.

Well, yes. If my incorrectly completed form and nasty letter had also included a £50 fine, I certainly wouldn't have had it in me to argue the toss, because I was too sick to do so, and THAT was the reason why I was filling in the forms in the first place.

That's the thing about benefits. You claim them when your life gets to a desperate stage. You're sick, perhaps terminally so. Your spouse has emptied the joint account and run off with So-and-so from Marketing, leaving you with a broken heart, no money and two kids who want to know where Mummy/Daddy's gone. You've finally managed to get up the courage to get out of a violent and abusive relationship even though you took nothing with you other than the clothes you stand up in. At the very least, you've lost your job. You're stressed. You're upset. You're running around trying to improve your situation and get back something which is recognisable as Your Life, whether that means you're attending countless hospital appointments or applying for countless jobs, and on top of this, the Jobcentre have presented you with over a hundred pages of forms to fill in?

And while we're at it, let's not forget the cuts to legal aid and the closures of Citizens' Advice Bureau offices which will make it even harder for people to get help filling in forms or conducting appeals. Nice one, George. Withdraw the support, thereby increasing the rate of mistakes, then charge people for those mistakes on the basis that they'll be unable to argue. It would make a wonderful Dilbert cartoon, if only it weren't targeted at real and vulnerable people at their time of need.

Minor mistakes are inevitable when people in these circumstances are filling in these forms. Fining people who can't afford to pay but aren't in a position to defend themselves, is appalling.

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.

Doctors

I had to go and see my GP today. Nothing's wrong - it's just that every so often there will be a note on my repeat prescription asking me to make an appointment for a "medication review" and then I have to attend.

Since I got all the diagnostic tests and the medication-juggling and so on dealt with while I was still living in Lowestoft, by the GP who'd known me since childhood, the doctor who has been "my" GP for the three years I've been living here doesn't actually know me - so it made no difference that she's ill today and I ended up seeing a different doctor. Today's appointment was much the same as every other and pretty much went as follows:

Good morning, how are you?
Fine thanks, yourself?
Yes, fine, thank you. Please take a seat. So, what can we do for you today?
Well, I had a note on my repeat prescription telling me it was time for a review.
Ah, okay. *taps at computer* You're on X, Y, and Z, yes?
That's right.
Any problems with any of those?
Nope.
How are you generally?
Same as usual, nothing new to report.
Nothing you need to raise?
Nope.
*taps at computer some more* okay, that's done. Do you need me to do you another prescription today?
I don't mind, I've got a couple of weeks' worth at home still.
In that case shall we leave it and you can just pick up your repeat as usual when you need it?
Sounds good to me. Are we all done?
Yes, unless there was anything else?
Nope, all good. Thank you for your time.

The trouble is that, as a patient with an ME/CFS diagnosis, there are no other answers I'd dare give. I'm too scared of being labelled a malingerer. So I get defensive and clam up.

A plethora of medical blogs teaches me that patients like myself, with chronic illnesses that don't seem to get much better or much worse, are despised. "Heartsink patients" is apparently what we are called - we walk in the room and the doctor's heart sinks because he knows that all he can do is dole out the drugs, which is not the role he slogged through medical school to attain.

The heartsink patient presents vague symptoms that the doctor can do nothing about. They bother the doctor with pointless questions and ideas and they seem to have no idea about what sort of thing actually warrants bothering a GP and taking up his valuable time. The caricature is of a patient holding a sheaf of newspaper clippings and internet printouts about quack therapies, because it is wrong to be concerned about your health if you don't have a critical scientific background. You should leave that to the expert who sees you for eight minutes a year.

And then there's the whole ME/CFS physical/psychological debate. What is the difference between a headache that exists and a headache that the sufferer only thinks exists? Personally I'm not sure there is a difference. Both patients are experiencing pain. Speaking for myself, I underwent psychological assessment in the earliest phases of my illness and was considered to have all screws firmly affixed. But that's buried many years back in my notes. Many doctors still consider ME/CFS to be a manifestation of depression, or attention-seeking, or even painkiller-addiction, and nothing says 'mental health problems' like the statement "the shrink said I was sane!" so I keep my mouth shut and hope beyond hope that the doctor will take me at face value.

So thanks to the medical bloggers letting me know how they view me, I feel resented as a patient, and obliged to take up as little of the doctor's time as possible. I do not dare mention to any medical professional the links and patterns that I've noticed since my condition and medication settled, lest I be categorised as 'obsessed' with my health. I have a normal human desire for people to not think badly of me and that includes doctors.

Paradoxically, there are things I probably should be mentioning. I mean, earlier today when the doctor asked me - actually asked me - if there were any difficulties with my medications, that was probably the right time to mention that for the last eighteen months or so I've been feeling really quite queasy about thirty minutes after taking ibuprofen in the afternoon or evening (but weirdly not in the morning). But I don't know! If I say that, is it going to be a case of "right, we'd better try you on something different for a while," or is it going to be more "FFS, stop wasting my time and clogging up my surgery with your hypochondria!"

To be absolutely clear, this has nothing to do with any of the GPs I've ever seen at my local surgery. They have never been anything less than courteous, professional and efficient. It's the ones who dropped the professional veneer, albeit with anonymity, to come online and let the patients know just how contemptible we are.

So, GP bloggers, off we go. Complain about those bloody heartsink patients who don't know how to behave. Because frankly, I have no idea how to behave and if you could give me some constructive pointers I'd be grateful.

The Wedding Of The Year

Please don't hate me for bringing up the Prince William/Kate Middleton/engagement thing. Yes, I know, it's already hideously overexposed. Yes, I know, you're sick of hearing about it. I'm sorry.

If it helps, this post isn't about them as such. If I wasn't in the middle of wedding planning myself, then the entirety of my response to the news of their engagement would consist of "oh, that's nice for them," and wouldn't warrant a tweet let alone a blog post.

However I have been nurturing a Bridal Brain since February, so my initial response was "oh, that's nice for them... hang on! Spring or Summer 2011?!? AIEEAAAAGH!!!" Ever since the drive home from Wales back in February, Steve and I have been planning for Spring/Summer 2011 (we've settled on a date in May) and now I am having irrational fears of our wedding being upstaged, sidelined, downplayed, faded out and all sorts of other directional diminishment.

A couple of times I very nearly tweeted "if they steal our date, I'll bloody well kill them," but recent events mean that even though I would only mean this in the figurative sense, and even though it should be apparent that someone with my physical attributes poses very little threat to a healthy Forces-trained male even without a constant bodyguard presence, it would still be a bloody stupid thing to say. So instead I went with "If they pick our wedding date, I'll... I'll... I'll be quite annoyed #IAmNotBraveEnoughToBeSpartacus" and felt like an enormous coward.

I mean, it's bad enough to end up sharing your wedding day with a major sporting event (Wimbledon, World Cup, Test Match Cricket, whatever) that your guests are going to be sneakily trying to keep track of. To clash with the hype of a major royal wedding... it doesn't bear thinking about!

The biggest problem is that, for obvious reasons, I have to spend a lot of time resting, and if I can't sleep, I tend to daydream, and my daydreams aren't always kind to me. This opened my brain to the horrific possibility that if they get married in, say, March, and they have, for the sake of argument, a pirate theme to entertain the kids who are attending, then when people come to our wedding in May and see all the pirate party bags and whatnot, then even though we bought that stuff in summer 2010, it'll look like we're trying to emulate them. Same goes for music, readings, colour schemes, dress style... it's unlikely they're going to have anything like what we've chosen, as they'll be restrained by a lot of protocol, but what if? What if our carefully planned and very personal wedding just looks like a poor imitation of the most highly publicised marriage so far this century?

I know this is irrational! I know that even if they want pirates, they won't be allowed pirates! I know none of our guests will be making comparisons! But Bridal Brain is not conducive to sane, rational thought!

.

..

...

I'll understand if anyone wants to just come back in June.

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.

The Wibble

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

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

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

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

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

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

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

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

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

Detangling

Another bit of benefit tangle is a step closer to being untangled.

Long-time readers will recall how, back in November last year, I got a job. A month later, I found that despite having formally and officially told everyone and their dog, as soon as I found out, that I was starting paid employment, I was still being paid Incapacity Benefit. Eventually I got them to stop it, but no one could tell me what would happen to the erroneously-paid money sitting in my bank account.

Well, today - several months on - I finally got a letter about it. The letter stops short of actually accusing me of wilful fraud, but I was less than amused by the weasel phrase "too much Incapacity Benefit has been paid. This is because of your work."

No. My entitlement to Incapacity Benefit stopped because of my work. The issue of too much Incapacity Benefit being paid was because of the failure of the DWP to act on the information about my change in circumstances, which I had gone to all reasonable lengths to convey to several of their departments, both over the phone and in writing.

I am reminded that I must pay it back because it is THE LAW. Gosh.

I'm perfectly happy to pay it back, as it's not money that I was entitled to receive in the first place. But would it kill them to apologise for their mistake? Or for taking four months after I spotted and told them about their mistake to decide what to do about it?

Anyway, I have to phone up and arrange to set up a method of repayment. Annoyingly, I can't do this today as their phone number is Monday-Friday only, which I wouldn't mind, except for some reason DWP postal communications via Business Post UK Mail only ever arrive on a Saturday when the helplines are all shut. I am sure this isn't just to spoil people's weekend with news of a stressful issue they can't take action or advice about for 48 hours, but I have to admit, I do wonder why.


And Now For Something Completely Different...

...a quick reminder about Blogging Against Disablism Day 2008.

Witty Title Goes Here

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

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

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

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

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

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

One hassle after another

The world and his dog is conspiring against me and my hopes for a smooth transition from benefit sponge to Usefully Employed Member Of Society.

You've already heard about the woe of the Interview Trousers, and how by the time they are the right length for me, I will already have been working for two days.

Steve isn't feeling well, so I'm worrying about him on top of everything else.

I'm less than optimistic about my ability to do effective grocery shopping in my first week of work, and have similar reservations about my ability to cook. So, I wanted to get a decent amount of shopping dealt with and out of the way, including a load of easy meals in that if necessary Steve can cook (if it was up to Steve he would live off chilli, pot noodle and biscuits, which on the one hand he enjoys, but on the other hand is not a balanced diet or one that I want to live on). Couldn't go shopping on Friday because Steve wasn't feeling well. Which meant dealing with a Saturday Supermarket Shop.

It would not be outrageous of me to suggest that most people find supermarkets on a Saturday at least a little bit stressful. Imagine, then, that you walk into the supermarket clutching your trolley and realise that the shelves are looking a bit... sparse. In some cases, one might even go so far as to say, "empty".

It seems that the local Sainsburys depot has unexpectedly closed, and that therefore the usual stock replenishment has not been able to take place. So there was precious little food to be had, particularly the fresh stuff. What there was, was hovering on the sell-by date, and not even priced down because it was that or nothing.

It wasn't quite a case of fighting scrums of desperate shoppers for the last pack of bacon, but there was a definite air of frazzlement as people tried to re-plan their week's meals, hunted for alternatives, put the goods they had gathered back on the shelves so that they could go try tescos instead... I confess to feeling a little burst of joy as I picked up the last steak pie, in contrast with the realisation that ALL the pre-prepared potato products were gone and that I would have to do my potatoes the old-fashioned, time and energy-consuming way, starting with peeling the damn things.

Still, got a £5 voucher by way of "sorry we didn't have everything you wanted".

And finally... the Muppet Show that is Jobcentre Plus. Ever since I found out I have a job on Friday, I have been trying to sort things out with them.

First, I contacted the Disability Employment Adviser (DEA) to tell her that I had a job. Her response was:
1) To give me the phone number for Access to Work - along with a warning that AtW's phone lines were down and that I would get a "this number doesn't exist" type message but that it definitely was the right number.
2) To give me an 0845 number for the Incapacity Benefit section so that I could call them and let them know about my job. When I told her that I only have a mobile phone and that as such, 0845 numbers are very expensive for me to call (they're only local rate from regular landlines), her response was "well, that's their number, you'll just have to phone them."
3) To make unsolicited excuses about Remploy and how busy they are and how that is why I got a job before they got back to me, then telling me that I should get in touch with them, and to give me their phone number as well. My experience in the field tells me that this is less for MY benefit and more for THEIR Key Performance Indicators. I suspect reporting a positive number of disabled people getting jobs is central to certain bits of funding for them.

By this point I was wondering if I'd called a DEA or if I'd got confused and dialled some sort of spontaneously number-spewing Directory Enquiries. I have no interest in spending my time and money on phone-chases in order to make other people who I've never met look good on their KPIs.

Which is probably why I came out with something along the lines of "I'm quite impressed that I managed to get myself a suitable job so quickly. It's reassuring to know that I've still got the skills to negotiate disability issues with an employer properly."

To which she responded with something along the lines of "You're nowhere near as disabled as my other clients. It was hardly difficult for you to get a job."

If it had been "you have a better set of skills and experience", or "you're a very motivated person" or even "you have a lot more confidence" I wouldn't have minded so much, but this woman knows absolute jack about 'how disabled' I may or may not be, apart from that I have a diagnosis of ME/CFS and an IB award until 2010 - which you don't exactly get for no reason. That's leaving aside the whole discussion about how disability isn't on a sliding scale anyway. Gaa.

The woman on the other end of the IB helpline told me that I would have to write a letter with the details of my job and send it to them. Well, eventually she said that. First, she said that my details were still being held by the Bury office and that she would have to pull them across to Cannock. I wouldn't mind if I hadn't already asked for that to happen no less than four times in the last two months and each time been told "yep, no problem".

Access to Work's phone lines are indeed down and were still down on Saturday. It's a good thing I told my new boss I needed Monday to deal with the benefits people. It's also a good thing that Steve isn't at work again yet and can give me lifts to and from work. Hopefully I will be able to get hold of them on Monday, and then make a doctor's appointment if necessary and prepare for whatever other hoops they tell me to jump through.

The actual job is rather secondary in all this faff and stress.

Yet more moving faff

...but first, a knitting update. I have embarked on my first adult-sized jumper. The yarn (Colinette "Cadenza" 100% merino wool in "slate") is gorgeous, the colours are beautiful. It's mostly blue tones, but with patches of rainbows. Meanwhile, Left Mitt v1.0 has been tried on, the only adjustment needed is for the fingers-bit to be a little longer. So I've done that, and have nearly completed the matching Right Mitt too. After that, will be another identical pair for when this pair are in the wash (or lost), and a similar but smaller pair for my mum. Basically I'm reckoning that at any given time for the rest of the year I will have one project on regular needles (the jumper) and one on DPNs (the mitts).

Now. Today being the first working day after my Official Move Date, a certain number of things had to be done. I had to go to my bank and my building society to update my details (understandably enough, these institutions won't let you do that over the phone), and I wanted to go to the Jobcentre in order to check that everything was as it should be with my benefit (I still get the same amount of Incapacity Benefit but it has to come from a different regional pot) and find out about help available for disabled jobseekers in the area.

The mission started off quite well, really. Steve drove us into town, and then, fortified with tea/coffee and scones, we went to my Building Society, which I would be naming here to praise their good customer service to all and sundry, except I'm not sure how sensible it would be to put any of my financial details on the internet, so let's just call them my Building Society and I promise to email them direct.

Stepped up to the reception desk, queued for about a minute while the person ahead of us was dealt with, then was greeted by a friendly, smiling member of staff, the conversation went thus:

HER: Can I help you?
ME: Yes, I've just moved house and I'd like to update my address details for my account.
HER: (fishing sheet of paper on a clipboard out of a drawer) No problem, have you filled in one of these change of address forms yet?
ME: Um, no.
HER: Is the account a joint one, or just yours?
ME: Just me.
HER: Then you only need this one form. Would you like to fill it in now, or take it away and come back another time?
ME: (taking form and noting it is a single side of A4) Um, now is fine, we're not in a rush.
HER: Okay, here's a pen, there's seats round here, oh, or there's a desk over there if you'd like to use it, just bring me the form once you're done, and I'll be here if you need anything.
ME: Marvellous, thank you.

Sat at the desk, filled out the not-too-complicated form, queued again for a minute or so, gave form and pen back to smiling lady who thanked me, assured me it would get sorted out today, and we left.

At that point I felt wonderfully positive. So I kissed Steve and sent him off to the local park to take photos of ducks while I attended to my Bank and dropped in at the Jobcentre.

Ha.

At my Bank, I was waiting for what seemed like ages (by the clock, probably not much over five minutes, but when standing is agony, your sense of time gets skewed) while a woman about my age grumpily dealt with the two or three customers ahead of me in the queue for reception, including going and having a rather unprofessional argument with one of the tellers behind the cashier windows. Eventually it was my turn, and she glanced up at me and opened proceedings with an abrupt "Yes?"

ME: Um, hi, yes, I've just moved house and I need to update my address details.
HER: Have you got ID?
ME: Yes, (opens foolscap folder) I wasn't sure what you'd need so I've brought all the ID I've got.
HER: Driver's licence or passport.
ME: I don't have either of those. (leafing through folder) I've got a full birth certificate, and my marriage and divorce certificates, several recent utility bills in my name, a bank statement, National Insurance card, P60...
HER: We only take driver's licence or passport.
ME: I can't drive and I haven't travelled abroad in years. To the best of my knowledge, neither of these things preclude me from having a bank account, or an address.

At this point she made a noise I'm more accustomed to hearing from Sister Dearest when she's in a moodypants. However, she finally deigned to poke my assorted paperwork and put my details into her computer.

Don't get me wrong, I'm hardly sweetness and light 24/7, but then, I don't work in customer service.

Onwards to the Jobcentre, where no less than three advisors were standing about by reception - fair enough as there was no queue. I started with "I've just moved to the area and I want to double-check my incapacity benefit has moved with me," but before I'd finished, one of the advisors had moved to a phone kiosk on the wall, picked up the phone, and was impatiently holding it out to me. Confused, I took it. It was the all too familiar sound of the standard Jobcentre helpline, inviting me to press 1 for income support, or 2 for Jobseekers Allowance... I pressed 3 for Incapacity Benefit and a couple of minutes later, a friendly voice at the end of the phone was making sure that the "push", as they term it, was happening. I checked and re-checked that this meant there is nothing else I need to do and the friendly voice confirmed that yes, everything is fine, there is nothing else I need to do. Grand. I thanked her and hung up.

Back to the Three Stooges Advisors, interrupting their chat to ask about local provision for helping disabled people to access work, training, services, etc. The person who wordlessly shoved the phone at me before, stomped to the wall of leaflets and wordlessly shoved the generic national leaflet for Access To Work at me. By now I was quite cheesed off, so I flipped open the leaflet and said "you see here where it suggests that I contact my nearest Jobcentre? That is what I am doing. I have come here, to my nearest Jobcentre, to ask about what specific help there is available in this specific town, yes? I've already read this leaflet, it's in every other Jobcentre in the country and online too."

I immediately felt bad about being so snappy, but Wordless Guy didn't seem to give a monkeys and one of his colleagues had decided to join us. As Wordless Guy wandered off, Colleague asked if I'd like to speak to the Incapacity Benefit advisor, C, who might know more about the sort of services I was after. He ushered me to a seat and said he'd find out if C was available now or if I needed an appointment. A moment later he was back to tell me that C would be with me shortly, but that's another blogpost.

As regular readers know, I have a neighbour, S, who has a drug problem. I'm calling it a problem because things like this happen. That's a problem. I don't consider telling you this to be a breach of confidentiality as she herself tells most people within thirty seconds of meeting them.

The thing is, S is a nice girl. I'm calling her a nice girl because of things like this. We have cups of tea and chats and occasionally go to the seafront for an ice cream together or something. I would go so far as to call her a friend, albeit not a friend I would lend £20.

S's habit and attendant mental health problems mean that she is classed as a disabled person by the benefits system and social services and as such she has help coming out of her ears - not just family and friends, but also plenty of money and more home-visiting social workers and community health workers and 24/7 helplines than you could shake a stick at. Then there's a plethora of voluntary and religious groups such as the Salvation Army offering her cooked meals, secondhand furnishings for her flat, company and friendship, and the salvation of her eternal soul. So the last thing she needs is me trying to "help" her, because really? Drop, meet ocean. Everyone she meets wants to "help" her.

But. She's my neighbour, she's a friend, and as such, I do worry about her sometimes. I want to make sure that I'm not saying stupid things or being counter-productive to her therapy. There's also been a couple of times when I've seen her and she's scared me - semi-conscious and white as a sheet, unable to open her eyes properly or speak in complete sentences. Is that what people usually look like when they've been using heroin, or is there a major problem? I don't so much want to know how to "help", as how to avert potential disaster and Not Cock Things Up. You understand where I'm coming from? It's sort of a case of, do I want to save her, get her back on her feet, look after her? No. But do I want to make her problems worse? No. Do I want her to die in front of me because I didn't know what to do or when to do it? Really not.

How would one find these things out? Well, I have the whole internet at my fingertips and I figured a good place to start would be NORCAS, the main drugs and alcohol charity in East Anglia. From the front page of their website (my emphasis):

"Our mission statement is 'To reduce the harm to individuals, and thereby to society at large, from the misuse of drugs and alcohol'. We are here to work with anyone experiencing problems with alcohol, drugs, tranquillisers or solvents, including families and carers."

Marvellous. I was a little disappointed that the website contained not much apart from a list of websites and the disclaimer "These websites may contain views which are not supported by NORCAS", but it did have contact details so I emailed asking for specific help. I outlined the situation and asked:

"I need to know at which point I should get worried or call for help, and who I should call; I need to know if I should be talking about it with her, or trying to keep conversations completely off it; I need to know how to make sure I'm not being counter-productive to [the rehab/therapy bunch]'s approach."

Today I finally got a reply.

"For your own information and to further support your friend, there are various organisations offering advice and information that can be found on the web and via telephone..."

So not you lot, then? And if I email them, will they just give me addresses for other people I can email? Talk about buck-passing. Your mission statement says you'll help, not just "signpost". So far you've given me no more help than Google.

"It would do no harm to encourage your friend to seek support from an agency such as NORCAS and if she is already doing so, supporting her in this. It may also be supportive for her to know that she can talk to you."

No. I don't want to be yet another counsellor. I want to know what tack I should take in order to not put my foot in it.

"If you are concerned about your friend at any time and believe that there is a need for medical intervention, I can only advise that you contact the ambulance service immediately."

Right. I'll also get the kettle on for Tom's colleagues so that they won't get too frustrated having been hauled out to tell me "this is what heroin users always look like, there's nothing wrong with her and nothing we can do, you are wasting our time."

Paul Allum of NORCAS, you are as much use as a chocolate teapot. I'm not sure why you get paid and I can only hope that the help your organisation offers the addicts themselves far exceeds the so-called help you've offered me.

Okay, so I'm not actually going to send that as a reply. But I'm tempted (and I kind of hope he googles himself and finds this). Any suggestions on a more polite response, or should I just leave it?

Oh, and a quick knitting update - I'm on the home stretch of the second sock and hope to have a finished pair within the week.

Cooking

I got myself a new cookery book the other day. It's called Just like mother used to make and it's by a guy called Tom Norrington-Davies. On the back are a couple of quotes from reviews, and the one from The Times says that "the recipes are simple to follow and comfortingly delicious to eat." Marvellous, thunked Mary. This is the book I need.

Oh dear. Oh dear oh dear.

I should have looked at the name, really. This book is written by a man, who has access to many varied London shops, and above all, can afford a dishwasher. This is speculation, of course, but if he washes all his own dishes I will be very surprised.

I'm on page 82 now and I am stunned with the amount of faffery this guy suggests. It's the sort of cooking that's probably fun a couple of times a week if you're the sort of person who enjoys cooking and gets a kick out of accomplishing a meal (and you have a dishwasher).

A particular area where Tom and I have fallen out is over the issue of soup. He describes several "comfort soups" which according to him are "low maintenance" and "great food for those times when we are under the weather." Under the weather, that's me, let's take a look. Tomato soup, great.

First, he wants me to peel and chop onions, garlic (actually this should be "bruised" whatever the hell that means), a leek, and some carrots. Washing-up count so far, at least one sharp knife and chopping board, and a bowl to put the chopped veg in, plus it's taken me four hours due to keeping needing to sit down, the odds are I've cut my fingers, and we've not even got to the recipe instructions yet. You're then meant to stand at the cooker for ten minutes "keeping an eye on" the veg while they sweat in a little oil in a covered saucepan (washing-up count: saucepan, lid, wooden spoon). Next, we add some sugar and some tinned tomatoes (tinned? Tom, I'm shocked, you mean I don't have to grow them myself?), whack the heat up, and stand at the cooker for at least five minutes, "stirring constantly". Add some water (he prefers stock but he can stick that up his jumper) and allow to simmer, uncovered, for about an hour, because I always wanted to turn my flat into a tomato-scented sauna. Finally, we chuck it through the blender (washing up count: one blender which he doesn't tell you must be washed before the soup sets on the blades - handwashing blenders is Not Good) and add milk, salt and faff to taste. Serve (washing up count: bowl, spoon, and he also wants nice fresh bread but we're just not going to go there).

Total washing-up: two bowls, one spoon, one wooden spoon, blender, saucepan and lid, sharp knife(s), chopping board(s), and I bet the work surfaces and cooker hob got splattered too.

Tom. Mate. If you ever feel really under the weather, here's what you do.

Get the bowl you intend to eat from, the spoon you intend to eat with, a tin-opener (I know you have one because of those tinned tomatoes) and a can of Heinz Cream of Tomato soup. Open the can and empty it into the bowl. Put the bowl into the microwave and nuke it for one minute. During this minute, assuming you recycle, peel the label off the can and rinse the can under the tap before chucking it in the appropriate bin. Rinse the tin-opener too and leave it on the draining board to air-dry. Get the soup from the microwave, stir it with the spoon, and then put it back in for another minute. Have a little sit-down. The microwave will beep but don't get excited, just in your own time get up and get the soup. The bowl will be hot, be careful. Give it another stir and eat. If it makes you feel better you can put a sprig of freshly plucked basil on top, or an artistic little swirl of cream.

Total washing-up: one bowl, one spoon.

I'm not even going to talk about what he expects me to do about mashed potatoes. Still, I have another 106 pages to read and hopefully there will be some genuinely simple and easy thing that I can serve up with microwave mash and instant gravy.

I don't want to be a domestic goddess, I just want simple easy food!

DLA503a, "Written Statement of Reasons"

It arrived in the post this morning, four sides of A4 that it took them 14 days to print out and put in an envelope for me. This supports my theory that the Department of Work and Pensions only ever send letters like this out to people to arrive on a Saturday, when the helpline is closed. They would have sent it sooner, but then it would have arrived at a time when the helpline was available and that would just be too sporting.

One side is just the usual "If English is not your first language..." and "we would welcome any comments, good or bad..." and about two sides were this information which is pretty general knowledge, it's the simple list of what they ask you to think about when you are considering whether you should apply for DLA or not.

And four paragraphs pretended to explain why I was not awarded DLA. It's not really very helpful stuff though. It says things like "you can cope with all tasks for preparing a cooked main meal for one person if you have the ingredients", but it doesn't say why they think this, you know, like "your response to section X indicates that..." or "your GP tells us...". This statement, and others like it, lead me to suspect that they didn't even read my answers on the form. In fact at the moment I'm feeling rather hard pushed to create a response beyond simply repeating the stuff that's already on my forms that they just obviously haven't paid attention to.

There's also a sentence that doesn't really make sense - I can only imagine that while copy/pasting standard responses, someone made a mistake, because it reads:
"You may require help at time with bathing but your conditions are considered to be reasonable well controlled with your levels of medication taken." (all spellings and punctuation reproduced exactly). I'm not sure why having a bath has any connection to the effect my medication has on my condition. I have No Idea how to respond to this statement. Ideas welcome.

The reason I'm blogging when I should be working on my response, is because after a couple of sensible, thought-out responses, referencing evidence on my forms and the report from the specialist clinic and so on, I got to a point where all I could think of to type was "read my goddam forms, you morons". I doubt this would go down well with the reconsideration lot.