I don't want your stupid medical adivce

Often people who think that expressing empathy is equivalent to solving problems will try to give me unsolicited medical advice - usually of the 'alternative' kind. I hate this. I'm chronically ill - which means I'm ill all the time and have been for years - and just about everyone has a (usually uninformed) opinion about the nature of my malaise and what I should be doing about it. They are often upset when I say I don't need or want medical advice. It's not helpful to try to fix my problems when you are not qualified or informed. What I need, what all chronically ill people need, is empathy - a human connection. I don't particularly want to relate to everyone on the basis of my illnesses.

Of course it feels unpleasant to empathise with someone who is suffering, especially when there's more or less nothing that you cannot do about it. So what tends to happen is that people act (unconsciously) to remove the source of their discomfort, which is my discomfort. They look for something to 'do' that will make me happy, so they can be happy. It's not helpful. In fact people often seem to be saying that I am somehow remiss in doing something about my illness. What is worse is that by not relating from their true feelings the interaction is just more isolating for me - all you care about is fixing me, you don't care about how it feels to be me. That's the message that 'fixing' sends. And after so many clumsy fixing attempts over the years it makes it far more difficult for me to be open about my experience - I don't want to be treated like a problem, so I don't say anything.

Basically if you start any sentence with "Have you tried..." I'm doing really well not to smack you in the mouth. I've had people do this time and again with absolutely no insight into my difficulties. People I hardly know send me emails starting with 'I heard you're sick. Have you tried..." I've taken the best professional advice I can get over three decades, thanks, and something you read about in some shitty little alternative health magazine is not likely to result in a miracle cure.

And you know what? I don't work so I don't have much income. I can't afford to go trotting off to the latest fad in alternative medicine because I don't live a middle class lifestyle with wads of uncommitted cash. I'm fucking broke! How the fuck am I supposed to afford those treatments at £30 and £40 or more a shot? Don't give me advice, give me money!

It's not that hard actually. If you feel uncomfortable - just fucking say so. That I can understand. Of course my being in constant pain (and in a bad mood today) is difficult, it sucks, it is a nightmare that I can't wake up from. If you aren't in pain, then you could pause to consider how lucky you are. You could express how you feel about that. Feel helpless? Well I do, so why shouldn't you?! So just say so, straight up. You don't have to try to fix the unfixable. I don't hold you personally responsible!

This isn't just me being a grumpy bastard by the way, other friends with long term problems know what I'm talking about. See this poem by Julia Darling: How to Behave with the Ill.

Antidepressants may change your personality

paxil aka paroxetine aka aropax aka seroxat

Tweeted by CognitiveTherap

Same story in the LA Times; in the Guardian.

No one talks about the way that depression changes your personality. No one asks how relevant personality tests are, nor what they measure, nor how seriously we should take them. This is a one off study of just 240 people which has not, as far as I can tell, been repeated. No one seems to measure personality before as well as after the onset of depression and treatment with drugs. This story should not be in the news at all. Medical journalism is a crock of shit. The Guardian article is slightly better written, the LA Times article is reprehensible and irresponsible.

Did you know that the information on Anti-depressant medications all say something like: "the action of this drug is presumed to be due to its effect on the levels of serotonin." [my italics] Actually they don't know, they certainly don't know why the side-effects come on within 30 minutes, and the mood effects take 2-4 weeks. They just don't know.

Blog posts of note:

Angry Mob: More Lies about the NHS. Critiquing a Daily Mail article. Daily Mail seem to get a lot of stick from more liberal middle-class commentators. Ben Goldacre reckons they characterise things into 1. those that cause cancer, 2. those that cure cancer - with no neutral ground. They are also accused of having a Princess Diana fixation. I wouldn't know as I don't read the papers much. But this seems like an important blog post because it highlights some bad reporting of medical facts generally, and some unsporting digs at the NHS.

Benefits Culture: Welfare Reform: penalizing claimants and carers. A round up of news on reforms especially of the law as regards mental health. It seems as though the general mood of the government is to take out their mismanagement of the banks and economy on the least fortunate while allowing bankers to claim bonuses for running banks into the ground. They also want to punish all sick people because a few people rip the system off. Could we focus on the cheats and frauds (at all levels including the government!) and leave the sick people alone do you think?

Look at how lightly the MPs get off for their frauds: no jail terms for instance, no one got sacked, some of those (gracefully) leaving parliament next year will still get their fat pensions! Listen how loudly and plaintively those who were honest complain about being tarred with the same brush - not so much fun when the boot is on the other foot, is it!

Red Tape II

I was a bit nervous about filling in the BF85A form and getting it wrong so I rang the DWP to ask about it. (twice!). They reminded me of another layer of red-tape. In 2005 I was out of the country for 4 months and did not pay National Insurance. As a result I do not, and apparently cannot ever qualify for Incapacity Benefit or Disability Living Allowance because my claim dates from a period when I did not have two years of consecutive NI contributions. (Note that I can and have topped up my NI contributions for the purposes of State Pension, but it cannot alter my situation vis-a-vis IB or DLA.)

So all I get is Income Support on the basis of incapacity. Trouble is I'm sure I recall getting a letter saying that I was now in receipt of the lower level of DLA at some point. I haven't found it yet. Should I be trawling through my files to make sure, or just accept that they are giving me accurate information over the phone (when we know that the point of the form is to check their records because they do not trust them)?

My instinct in dealing with Government departments is never to volunteer information; always wait to be asked directly for it, and then supply it with alacrity. This is because volunteering information usually causes problems. (Though keep in mind "Changes that you must tell us about"!). In which case the BF85A becomes a relatively straight-forward exercise - I don't get any of the benefits they ask about and have no "changes you must tell us about" to tell them about.

Red Tape!

The Department of Work and Pensions, the government department which pays me Incapacity Benefit and Disability Living Allowance has just asked me to fill in a BF85A form. The front of the form is filled out with my details, BY HAND. The first question requires me to tell them what benefits they pay to me and how often they pay it to me. One of the questions is "who is getting or waiting to hear about this benefit?" Could they make it any less personal I wonder?

This is so mega-fucking-stupid! It's so inefficient! If they don't know what they pay me, how often, and for what reason, then they are fucking incompetent. How hard would have been for them to tell me what they are paying me and ask if it's right? Tick yes, over and done with.

This is why I have to keep good records - because the only way I know what they pay me and why is to check the letter that they themselves send me, usually once per year. Sure, I get an amount in my bank account regularly, but it has no details about why I'm getting it. I have three weeks to fill in the form and return it - with Christmas post that's more like one week.

They also sent me an IB40 which is a 24 page brochure about the Incapacity Benefit. This in fact clears up the mystery of the "CHANGES YOU MUST TELL US ABOUT" in the letter (from the DWP) telling me I qualified for Incapacity Benefit as pages 14-17 explain "Changes you must tell us about". Actually in rummaging through my files I also found an INF4(IS) which is infact this same information on a separate sheet.

I take drugs!

In my youth I used to take illicit drugs. But in 1992 I gave all that up as a dead-loss. Drugs never made me happier, and if anything made me more unhappy by causing me to take poor decisions and covering up the underlying unhappiness. However over about three decades now I have taken a variety of prescriptions drugs (or meds as we veterans of the mental health system tend to call them), not all of which I can remember. Drugs are the first and often the only line of treatment for my several ailments: depression, anxiety, pain, migraine.

Depression

Anti-depressants form by far the largest category of drugs I've taken. These drugs all affect different people differently - sometimes oppositely for instance you might lose/gain weight or feel drowsy/hyper-alert (I get fat and dopey). I'm hyper-sensitive to dose changes and could be badly affected by such things as when the chemist changed brands.

amitriptyline. This is one of the earliest ADs and still a front line drug in many places. It is soporific to some extent (a large extent for me) and so goes well with insomnia. In lower doses it is widely prescribed for pain (which how I first started on it). I would not go so far as to say this drug ruined my life, but I do think it cost me my marriage, and about ten years of my life lived in a daze. As I overdosed on it 10 years ago it did nearly cost me my life in that sense. It is still offered to me whenever I see someone new.

Various tri-cyclics with much the same effect: imipramine, prothioden (aka dosulepin), trazodone, plus a couple I don't recall the names of.

paroxetine. Took this for several years. Quite useful. Main side effect was delayed orgasm which the Mrs enjoyed (before she left me). However getting off this shit is tough. The withdrawal effects are savage! Massive headaches and nausea - it goes on and on! Smallest pill is 20mg, but you really need 1 mg steps to easy off it. 20 > 0 would be unthinkable, and I was cutting these bastard oval pills into 4ths and 8ths!

fluoxetine (aka Prozac). Sent me to sleep - supposed to be stimulant! Was dozy for a few weeks before deciding I'd rather be depressed.

citalopram. snooze...

I've never been able to afford St John's Wort, as it is fucking expensive. Currently I don't take depression meds, though with the English winter coming on I'm thinking about it again. I was often on two ADs such as Paroxetine and Amitriptyline.

Anxiety

stellazine - used as an antipsychotic, but in smaller doses for anxiety. To be honest I have no recall of how effective this was, but I did overdose around that time, so perhaps not very.

thioridazine. Also sometimes used as an anti-psychotic, but given to me for anxiety. I remember that it dried out my mucus membranes, made me constipated and caused me to suffer because I had haemorrhoids at the time! But it also made me dopey. The psychiatrist lied about the side-effects and then got indignant when I told her she was a fucking bitch (she got her own back in my records by saying I had "unrealistic expectations" - fucking bitch).

(These more serious anti-X drugs come with powerful side-effects that make them extremely unpleasant for me to take. Really not worth it for anything short of psychosis - which I don't suffer from, despite what people think!)

diazapam (aka Valium) one of the benzo-diazapines which are bit like opiates. This is wonderful for anxiety, but hideously addictive. Hard to get Drs to prescribe this stuff - much harder than temazapam (see below). Usually take this for going to the Dentist to stave off panic attacks. Love this stuff, and thank goodness I never got access to it in my recreational days!

Insomnia

temazapam - gets me off to sleep when nothing else works, although not always. Sometimes I'm just too wound up to sleep and even these don't work. Quite addictive so I try to keep the dose low and spread them out. Also a bad hangover. Some time back had another benzo called clonazepam (aka klonopin) - much the same (though I was taking more than prescribed so the Psychiatrist stopped them - probably just as well!)

Herbs. Things like hops, passion-flower, and valerian root do actually work as soporifics, though in my experience all cause a hangover if I take enough to get a noticeable effect. Kava kava used to work quite well and was freely available in NZ, but has been banned in the UK because one person in Europe had a bad reaction.

Pain

Various over-the-counter combinations of ibuprofen, paracetamol and codeine. These are helpful on minor pain days.

NSAIDs (Non-Steroidal Anti-Inflammatory Drugs).

diclofenac being my current poison. Long term kidney damage a bit of a downside. One per day max or bad stomach problems.

naproxine and similar drugs depending on what the NHS are buying at the time.

brufen - basically slow release ibuprofen. Haven't used it for a while.

Nerve-agents (aka anti-seizure drugs) These are prescribed on the basis that my pain nerves are over active (fucking A). They work by reducing the electric potential of nerve cells and dampening nerve activity.

gabbapentin. Specific to pain nerves so less likely to cause overall drowsiness etc. For me caused unpleasant hallucinations a bit like a bad trip on magic mushrooms. Not good, not something I enjoyed even in the bad old days.

carbamazepine. Good pain relief but completely fucked me up - could barely remember my name! Three months in the twilight zone. For a long time after I stopped I did not need painkillers - my longest stint in years. If only I could adjust to having 50% of my present IQ and no particular ambitions this would be the thing for me!

The weirdest pain treatment I had was injections of local anaesthetic into the affect area (i.e. the back of my neck) I nearly passed out - there's something very un-natural about being injected in the neck! Didn't do much else though.

In conclusion

I also take migraine medication (maxalt) occasionally. And of course I eat a shit load of dark chocolate (containing anandamide, theobromine, phenylethylamine and tryptophan) - fortunately my migraines are not food related! Had one today - take a pill, head to bed, and when I wake up it's all over. Grateful for this stuff.

On the whole I've found that most drugs just fuck me up, and I'm better off without them - I try to take the minimum, and I'm better at handling the pain now anyway. The alternatives are all expensive and although I'm grateful to the NHS they don't pay for the things I find most useful like ongoing psychotherapy. I could do with some physio as well, but I can't get the Docs to agree to it. Don't even fucking talk to me about alternative medicine - I've never felt the slightest effect from homeopathy, or any other 'alternative'. The best I could say is that they seem to be harmless - if pointless and expensive.

One of the best things for all of the above is laughing. So now I try to see and hear as much comedy as I can. This means that the BBC is as important to me as the NHS. I love the News Quiz, I'm sorry I haven't a clue, the Unbelievable Truth, Mitchell and Webb; and Have I Got News for You, Never Mind the Buzzcocks, Mock the Week. The BBC fosters so much comedic talent. Jeremy Hardy is my laughter physician. He'll most likely never read this, but I salute you Jeremy. Laughter helps with pain, it helps with anxiety and depression. It just helps.

Panacea

Sometimes all the cognitive therapy techniques and affirmations in the world don't help. Mindfulness is the next big thing in 'treating' depression and anxiety - and people I know are heavily involved in this new industry. It does help, but it's not a panacea. (Beyond Blue)

There's that old saying: when the only tool you have is a hammer, then everything starts to look like a nail. The mindfulness brigade are a bit like this at times.

Normality

The first year after stopping work was the worst. The paper work is incredible - and I could barely hold a pen! Not only was I getting and sending letters to my employer, but there were doctors, specialists (based in hospitals which create their own red-tape), the Job Centre (which is the front desk of welfare here), the Department of Work and Pensions, Her Majesty's Revenue and Customs, and The City Council. In each case a have a file an inch thick or more. I had to invent a filing system and be very careful to keep everything. I'm not a natural home filing person!

While all this was happening I was in incredible pain - often unable to hold a tooth-brush to brush my teeth for instance. As my Aussie friend remarked: "must making having a wank difficult!" [urm, yes...] I was also very anxious and swung into depression on a regular basis. I think I'd need a book to write about the various medications I've taken. I was quite lost in the UK system, though I'm not sure I'd have been better off anywhere else and I'm glad I don't live in the USA or India! Dealing with the pain, the disturbed mental states, the massive grief, and the bureaucracy nearly did me in at times. Though of course there are also positive memories of helpful and friendly doctors, and council staff; and of friends who rallied round.

But the over-all effect, looking back, was to create a full-time job managing my health and my connections with the system that was supposed to support me. This aspect of the situation absorbed almost 100% of my energy for the first year or so. Then there were periodic flare-ups.

When you are chronically ill there is a tendency to over do things on good days. It requires pacing, but when you've been at 25% for a while, and suddenly you feel as good as maybe 50%, you tend to forget the new limitations imposed and go for 75% which causes a crash. There are boom and bust cycles. For me the other route into pain is when I'm stressed and physically tense - fibromyalgia means that holding tension, even involuntarily, is painful! And I'm often anxious - any kind of conflict however minor seems to send me into flight or fight without my having much say in the matter! The pain flare ups used to really freak me out. I thought I'm never going to be any better than this. I'm more used to the ups and downs now. I have some long term impairment, some constant pain, but if I manage myself better, then it's all manageable. If I pace myself then my quality of life is OK. I have days when I don't take pain-killers, and I don't take other drugs. I also have days when I take a lot of pain killers, a little valium, and a lot of chocolate!

So this is normality for me. I've gone from being very active in many fields, to dicking about with some writing and doing reception 3 hours a week for a Buddhist Centre. My identify has undergone radical surgery - I'm not longer a musician, or a composer, or an artist, or a photographer, or even a worker: now and probably for the rest of my life I subsist on benefits.

Benefits Culture

Interesting, well written, informative and sensitive blog on the experience of living on a benefit in the UK.

http://benefitsculture.wordpress.com/

IB50 and Incapacity Benefit

IB50

My last blog was on applying for the IB. So finally after five months my reply came. What a relief! I had been quietly stressing that it wouldn't come through. You have to see one of these letters to believe it though. It's four pages of typed information in a non-proportional font (ie probably printed on a very old fashioned line printer) with headings in block capitals, and very little in the way of helpful formatting. All you want to know is approved or denied!! So you do a quick scan of the four pages but nothing stands out - it's just blah blah blah.

So you have to start reading from the beginning and it starts be describing the process which you've just sweated blood completing in case you could possibly forget it! It tells you who gets this kind of benefit. It tells you that you recently (strange definition of recent, but let's not lose focus) filled in an IB50 form and that they have also potentially looked at other kinds of information and what that information is. Then they tell you how they assess your claim, about the points system and how they work out the points system. Then they spell out all the criteria under which you might have met the threshold (physical, mental, both) and then halfway down page two come the blessed words:

THIS MEANS YOUR AWARD OF BENEFIT WILL CONTINUE.

I see now why I missed it the first time - it looks identical to a heading. However there are a further two pages of type to read through. At this point it seems important to at least glance through them because there might be some time bomb in there. Looks like I'm clear of further entanglements till April 2011 which is a relief.

Part of the reason for the extra verbiage is that this is a standard letter for everyone whether or not you've had the benefit before - a lot of the info is only relevant to first timers. Such as several paragraphs on not needing to send medical certificates (I stopped over a year ago) and contacting people about needing to confirm incapacity with employers, unions or insurance companies.

Most of page three is about if you start to feel better you must tell them. Then this, which is classic:

CHANGES YOU MUST TELL US ABOUT

There are certain changes that you must tell us about because they might affect the amount of money you get.

Then it moves right on to the next section. So just 'certain' changes, nothing that needs to be spelled out ;-). Page four is only half used by the MORE INFORMATION section which is about how to contact them (the information is that the information is on the front page), and then how to get general information on this benefit.

Incidentally I notice something on this form which makes me think that my housing benefit got all mucked up because they weren't taking into account my being ill - people on IB and DLA qualify for a higher level of support than others.

For me the benefits rigmarole becomes a full-time job and I can't seem to cope with anything else while that is up in the air. I think it's because I'm totally reliant on it to live and I'm a fucking long way from home or any kind of non-governmental support. When that is uncertain my whole life seems to go to pieces. So I can now focus on rebuilding my shattered life and thinking about how I can participate in society and my community in a positive way. I'm doing some volunteer work - just three hours a week at present - and enjoying it. Perhaps I'll be able to build up to doing more. We'll see.

Applying for Incapacity Benefit

After I had to stop working was a lean period because I did not immediately qualify for Incapacity Benefit (IB). What happened was this. As an acolyte to a religious order I was invited to be ordained on a four month retreat in the mountains in Spain. Yes! The business is run by members of the order and in return for a certain number of years service, and some other minor conditions they not only gave me leave but paid the cost of the retreat. So far so good. I should say that for the five years I worked for them I did so as a volunteer receiving board and lodging and a small stipend – so the retreat was the big payoff. But while I was away they did not pay National Insurance contributions for me and though I could top them up for the purposes of my pension, there was nothing I could do about the IB, and just had to wait until I qualified – about 6 months it was.

Applying for the IB is a nightmare. One fills in an IB50 form in which they want to know every little detail of one’s illness and disability – no detail of your affliction is too small. When one is “mentally ill” (how I hate that term, but that is my designation) one must supply details just as though it were a physical illness. “How does your mental illness affect your life?” they ask. With mental health issues you have to divulge your deepest fears, your darkest moments, your black heart on command to complete strangers in clinical detail in order to be taken seriously – it is grotesque. If I wasn’t suicidal at the start I was by the end. What they don’t tell you, but the Citizen’s Advice Bureau do, is that some drone goes through with a marker and gives you points on the tick boxes – they probably only look at the narrative answers as a last resort and in any case they won’t take your word for it, you have to be examined.

When one is sick it is expected that one will talk openly and frankly about one’s illness to any stranger that the state says one must – they’re paying the bill after all. So I duly showed up for my appointment with the state doctor and the anonymous seventies office block which looked like it had been going cheap. I was anxious to the point of nausea, but I knew that my life depended on this meeting.

When said doctor appeared to call me from the mercifully empty waiting room I was gob-smacked. He was late 50’s and hugely fat. Perspiration ran down a forehead pocked with pimples old and new, and his hair hung limp and oily down the side of his head like a dead fern. This man was going to judge my state of mind and body? Actually this fat and spotty man was very kind and I realised that he had a shitty job that he did with the grace that (older ) English people still often have under difficult circumstances. Don’t get me started on the youth of today.

Anyway he was kind and I am grateful to him. Then after eight months you get a letter with a new IB50 to fill in. Same ordeal all over again. Except that I got my form in by the due date of 27 June, and now it’s October. I’m too terrified to ring them and ask about it because they may well judge me fit to work – this means £25 less per week (which means not being able to afford my psychotherapist) and having to take seriously the idea of finding a job. Who in their right mind, in this performance and youth obsessed world, would employ me? It’s terrifying.

Other perceptions of the IB50 experience

• benefitscroungingscum.blogspot.com

Tips for filling in the IB50.

Disability Living Allowance

Ah shit. Now the UK Govt is looking to save all the money they wasted on the banks by cutting the DLA! Read this

"A government green paper has revealed plans to stop paying disability benefits and hand the cash over to social services instead. The consultation period for the green paper ends on 13 November. If there has been no significant outcry against the plans by then, it seems very likely that whichever party is in power after the next election will seize this opportunity to cut public spending by over a billion pounds a year. Although the actual changes may take years to be brought in, it is what happens between now and November 13th that is likely to seal the fate of attendance allowance (AA) and disability living allowance (DLA)."

Now - join the campaign against it! here >>> Benefits and Work.

Also look at the Social Care Experts blog.

Sign the Downing St petition

Chronic Illness Leading to Being Fired

I don’t work because I'm in constant pain, and suffer from terrible anxiety and recurrent, often suicidal, depression. I used to cope OK but things just piled up. In 2006 I had 8 weeks off with fibromyaligia. I got back, but after 6 months I was in poor shape again and at the same time feeling anxious and depressed. In May 2007 I just had to stop. The first six weeks were sick leave. After that I was on statutory sick pay for six months.

'Work' were anxious not to offend me but completely inept when it came to this sort of thing. They had swung from a laissez-faire approach which resulted in several successful (and expensive) claims for wrongful dismissal, over to an officious and doing it by the book approach. They were of course reading the book for the first time, but were doggedly determined to do the right thing – i.e. make sure that I could not sue them.

After a year it was apparent that I was not recovering. My doctors could offer nothing except pain killers at the time - I was offered opiates at one point but turned them down! Like I need to add addiction to my problems! Antidepressants can help with pain as well, but the side-effects generally make life unbearable - they all send me to sleep. 10 years of amitryptaline nearly ruined my life and certainly cost me my marriage.

So I was called into a meeting. In an hour-long meeting they patiently went through the options explaining the details and the consequences of each. Then they told me that they’d already decided to sack me. Actually it was completely fair as I could not work. But the pretence of having options was a bit surreal, and it was an hour of bullshit I could have done without.

There was still some fall out from this as I rent my room in a communal house from the same charity. But that's another story.

So now I survive on benefits and feel embarrassed about it. I've become quite isolated over the last two years - certainly having chronic illness sorts out who is a friend and who is merely being friendly. Lately I've been doing some volunteering which is good - it gets me out of the house and meeting people. It was almost panic-attack stressful to start with, but I'm learning the ropes now and getting the hang of it. Three hours a week so far. Ironically the guy who trained me on the money side of my job has just been arrested by the police for stealing money and tools from the place. Everyone is struggling with being very angry and remembering that they are supposed to be compassionate :-)

The Council Pay My Rent II

Just received two - two! - BENEFIT DECISION NOTICES, dated one day apart, in the post after having submitted a new letter from my landlord. Got the review I asked for and the result is I'm back to the council paying my whole rent with the amount for bills included. This leaves me with a dilemma. My understanding is that utility bills etc should not be included in calculating my benefit (which is fair enough I suppose). The whole point of my recent decrease in benefit was that they'd been over paying me.

So what to do? I don't have direct contact with the person making the calculation and neither does anyone that I talk to at the council - theoretically the rules are iron clad and just applied by the anonymous drone who makes the calculation. I have very little say in their decisions as I found out a month ago. Then it meant losing £15 a week, this month it means getting that back. I rang up the council to clarify what I'm getting now - it took 30 mins on hold (only the unemployed could possibly have the time to be able to get through to them). I wonder if it was something to do with being on both Income Support and Disability Living Allowance - I think that entitles me to a higher level of support.

A recent appeal court ruling says that Councils cannot reclaim any over-payments that result from a council mistake. See the Daily Mail report: Taxpayer foots £1bn benefits blunder bill as claimants told they don't have to return overpayments (they are not the most sympathetic paper to our plight, but came up first on Google).

My inclination is to keep my head down. I can't say I understand how they operate and every time I have any contact with them I both learn something new and find I was misinformed the last time I contacted them. It's incredibly stressful getting mucked about like this. I have resigned myself to being poorer, and I'm loath to kick off the whole process again if I don't have to.

It's not entirely ethical I suppose, but on balance I think I'm not going to ask them to consider paying me less. It's not a huge amount, and I do not live an extravagant life. It means I can put a little aside for those new winter boots I'll be needing before long.

Immigration Antipathy

Some insights into why the Brits hate immigrants: see I'm not paranoid, they are out to get me. Well some of them are. Some of them are very polite and being quite super about the whole thing.

The Council Pay My Rent

The Council pay my rent – else I’d be living on the street I suppose. But recently they thought up a new way to cut their benefit budget. Rightly, they assess what a reasonable amount of rent is in this fair city, and limit what they pay out so that no one is treated to a better class of accommodation than a bludger should be able to afford. Though I have lived in the same house for seven years and become accustomed to it.

Recently in a daring of sleight of accounting they redefined the assessment area to include vast tracks of farm land and small villages up to an hour’s train ride away. The median rent across this area is, surprise, quite a lot lower than the city itself, so if you pay rent in the city and claim for housing benefit your are 100% unlikely to be fully covered.

So when I informed them – as the large red lettering on their written communications with me tell me I must – that my modest rent had gone up by a modest £3 or 4% I got a letter saying that my benefit was going down by £12!

'You have the right to appeal' said the lovely Ms G when I called the council to ask 'what the fuck is going on?” but she made it clear that there is no leeway they have to pay you what it says on the scale. And then explained the new system. I called my MP, who, worst luck is a Liberal Democrat – although I gather he doesn’t claim for commuting to London and therefore still has a modicum of credibility. I wrote to my City Councillor, I wrote to the newspapers... I did not sleep.

As it happens I was given the wrong information. The Council have been over-paying me for a year. At hearing this I wept uncontrollably on the desk of my advisor at the Council. But we're not going to ask for it back, she said. (I didn't know until a day or two later about a recent court ruling which says that they cannot ask for money back if the overpayment was their incompetence). So I'm still down about £15 a week. Ouch.

None of this was helped by the poorly set out and ambiguously worded letter from my landlord - actually from the property department of the trust which administers the place. It took quite a lot of jumping up and down to get them to understand that a table of figures would make my life a lot easier than hiding them away in a novella.

The good news is that hidden away in the jumble and garble were some claimables that the council, as there was an ambiguity, had simply ignored when calculating my entitlement. So I may well be better off than I feared. Taking the new information in today - but of course a decision takes 4 - 6 weeks!

I've been really stressed this past couple of months - not sleeping much. Hopefully this will put the matter to rest for another year. Now all I have to worry about is the fact that I submitted my IB50 in June and haven't heard back from the Govt.

Can't Listen to the News Anymore

Some of you may have noticed that there's a bit of a fracas recently over some bad investments – when you have no money it’s hard to keep paying attention while the news is about millions,billions and even trillions. I’m hazy on the details but the greed of a few has certainly had an unintended consequence. It seems that we poor people, especially we invalids (i.e. not valids) are somehow right at the top of the list of targets for those people seeking revenge. Somewhat surprisingly it is politicians - also in the news recently for stealing from the public purse and nowbeing unwilling to pay back what they stole – who're amongst those who are gunning for us.* How dare I take £8k a year in benefits (including housing, income support, and incapacity) just because I can't work? Somehow I seem to have lost perspective... so sorry... is it true that it costs £20k per year to keep someone in prison?

Absolutely dependent on the state as I am at present I find I can no longer listen to BBC Radio 4 news because of the anxiety I feel when everyday some rich and powerful bastard says he or she is dreaming up some new way to get back at me for getting ill. It’s frankly terrifying to think that I’m hanging by a thread and someone who earns more in a week than I receive in a year wants to cut that thread. They only do it to attract the popular appeal that comes from being a cunt to people who are less fortunate - which tells you a lot about the shadow of the British.

Foreigners, ever unpopular in Britain, are another popular target on the news - the BNP are only the ugly face of British racism. Lots of less extreme people hate the fact that Britain is part of Europe, hate the fact that many foreigners come here to live, and would love to send them all packing. (But by the same token a jocular slightly racist apostrophe by a member of the Royal family causes outrage for weeks on end in the same papers that decry Europe and immigration... I think they just like being outraged). Being both a foreigner (albeit a white one and therefore not beyond the pale) and a beneficiary I find it all a bit distressing. So now I wait until the News Quiz is on because Sandi and the gang are the only thing that makes it bearable. Gawd bless the New Quiz and Radio 4.

While I'm on this theme I wish they'd leave the bloody BBC alone, and that the bloody BBC would stop tempting fate by using the license fee to compete in the commercial arena. The BBC is one of the great institutions of the world - let's not over-egg the pudding shall we? Stick to our knitting, what? Make sure there's knickers on under the fur coat, if you catch my drift! Don't fuck it up! Life would be immeasurably worse without the BBC doing what it does best.



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*Did anyone else catch out Leader of the House, Harriet Harmon, last night talking about the "problems caused by the expenses system?" The expenses system did not cause the problem, it was greedy dishonest politicians who caused the problem. It was the subversion and exploitation of the expenses system by the unscrupulous! No wonder Christians pray "lead us not into temptation" - they find it so bloody hard to resist. If there were loopholes why did they not own up and close them? Now these people want to force me out of my legitimate minimal life-support because of mistakes that they made? Let them get by on what I get for a year and see how they cope.

Introduction

I came to the UK in 2002 having sold most of my meagre worldly possession and resigned my job at the Polytech library. I was still optimistic and idealistic – I was coming to study Buddhism with my teachers and immerse myself in the burgeoning Buddhist culture which you will be surprised to know flourishes here in the UK. I ended up in a small UK town where I worked in various capacities for a not-for-profit business that gives the bulk of its profits to a charity whose aim is the promotion of the Buddhist religion (or something like that). It buys property with the rest of the profits.

Two years ago my health collapsed. I have struggled (successfully) with depression and anxiety all my life, but now my arms and back were in agony – I have a syndrome… fibromyalgia, or non-specific upper-limb pain (as one specialist referred to it). Bless the NHS and the generous benefits in this country – I’d be lost without them. But. Here I am a ‘bloody foreigner’ living on benefits with no savings and no prospects of ever being able to go home or be cured. I could die from embarrassment, if I don’t kill myself first.