Within An Hour Of Getting A DWP Personal Capability Assessment I Was Self Harming-Welfare Reform

Three days ago I received an Incapacity Benefit PERSONAL CAPABILITY ASSESSMENT (re assessment form), within an hour I had started self-harming again, something I had managed to not do for over a year. I cried solidly for 4hours, got one hour sleep despite being exhausted. The next day I was frequently bursting into tears, could hardly eat and was self harming again, that night I got 3hrs sleep, tonight I have had none….coincidence ? I think not.

I have ME/CFS in the ten years since I have been ill with it, my general health & fitness is worse, thanks largely to a dismissive GP(he fully accepted I have ME but always dismissed any alternative approaches(diet, supplements, very low dose anti depressants), any US research, and passed me off as a ‘psychiatric case’ this lack of support is mentally damaging & tantamount to abuse. Though I expect it is just a lack of understanding that even when a GP can’t ‘fix’ it, they can go a long way by being caring & supportive). Along with government & media vilification of those who are long term sick, especially those like me with ‘invisible’ changeable conditions, life is becoming so stressful that I am very frightened about how far they will push me. I am currently seeking legal advice to help me through the DWP PCA re-assessment. But not being able to cope with phone calls is making it very hard to start even trying to find a Welfare Rights Adviser. I get so distressed on the phone, trying to be ‘heard’ that over the years, I have found writing the safer option.

The friend who came with me last time, has said she will come again if I am called for interview, but can’t get into her head that the new computerised test has no place for anything other than yes/ no answers, and that I desperately need her to be fully informed & proactive. With ME/CFS every day, every hour, every week, can vary hugely. As it does between different people. Over the years, you just about learn to cope by ‘living within it’. Living within it means identifying what helps, when and what does not. For me, it means eating well, and even, on the very few days a month when I can(many can’t) it means doing a bit of gentle exercise(though government policy seems to be full of mixed messages, ignoring MY NEEDS, & condemning me to a life of further preventable illness, through the fear of being branded a cheat.) It means listening to my body & letting it sleep when it needs to sleep & wake when it needs to wake. Sod everybody else’s timetable.

That way I can have some, miniscule quality of life. It often means learning to say no. So, if you are careful, it is more manageable. But still, even a relatively easy few hours out on a special occasion or just to get some sunlight takes a disproportionate amount of energy & you know you will have to make sure you rest adequately afterwards. Do that for a few days, you know, living by a ‘normal person’s timetable, and you are brought to your knees & left mentally very fragile.

That’s why for the last FOUR YEARS, I have spent Christmas alone mostly in bed ‘resting’, seeing no one. My family don’t live that far away, but to get there, due to lack of public transport I would have to be away at least three nights. In a noisy house, unable to properly ‘rest’ running on empty bursting into tears all the time. The stress in the weeks prior & the verging on suicidal ‘crash’ that would follow(leaving me very vulnerable & unable to cope with the slightest stresses when I got home, just makes it not worth the price)I’d rather be at home, unstressed, looking after me. It feels like shit to be so exhausted that, you are bursting into tears all the time. It feels like shit, knowing when you push yourself, to use more than you’ve got at the time without resting as & when you need to even slightly, you will end up with a low grade sore throat, possibly a sore mouth full of ulcers plus all the other day to day stuff.

In the last four months I have missed my grandmother’s funeral, & will miss my brother’s wedding next week. Do I sound like someone who can hold down a job ? The brutal truth is, I actually struggle to look after myself day to day, in the way I would want to & people would be shocked to realise just how it is behind closed doors. You cut corners everywhere, not because you don’t care but because you need to.
The problem is that, on the surface I ‘look’ healthy. When I walk down the street to the shop, you just see that, you don’t realise that, it may be 6pm in the evening and I’ve been trying to find the energy, to get washed or dressed since 6am. Or that I’ve had many false starts. Getting up to get showered, then realising it’s better to delay it for another hour or so, or just managing little bits of it. You don’t see that my muscles are burning, standing in the queue, or that trying to cross the road, the extra time it takes to process the visual info, between looking left & right, makes me hesitate as I can’t be sure if I saw it was safe to step out. You don’t realise my trip to the local shop is because, I don’t want to burst into tears in a supermarket at a busy time, overwhelmed by the noise, lights, people walking across me while I am trying to process the simple information on my list & work out where the item has moved to.

Simple things like Sainsbury putting all sorts of different apples in different places, & the loose stuff away from the scales, so it’s much harder for me to, retain the price info in my head, between products in order to make my choice. This is how cognitive dysfunction affects you. You take these things for granted as I used to. When you are running on empty (effectively on a day that is an ‘ok’ day) these are the things that make it so much more stressful. Do you know what it’s like to walk into a cold food section or passed a bread shop & suddenly gag because of the smell? It is ridiculous, most of the time there isn’t really much of a smell, or usually it’s pleasant but sometimes it just gets you.

I am NOT mentally ill, I have ME/CFS, a physical illness, but living with it in such a hostile, arrogant, dismissive, unsupportive environment, is having a serious impact on my mental health, let alone allowing me to use the little energy I have, when I have it to improve my quality of life.

The policy seems to be….that of , you say you’re ill, so we will make your life so full of stress that you will be certainly sicker than you were at the start of the process. In fact , let’s call it kill or cure. If you don’t get cured , we will incite you to kill yourself.

Why I love the 2012 "swastika" Olympic logo....

Why I love the 2012 Olympic “swastika” logo !

What brilliant subversion. It wasn’t lost on me and I should imagine in a few decades some art degree or other will be citing it as ‘political subversion’.

The second I saw the static logo, oh my god it’s a swastika, was my reaction. A wry smile emerged. Horrified but well, I’m English and appreciate irony. I’m quite well aware the original meaning is as a symbol of wellbeing…..before , well, you know who hijacked it. Much like the Labour party has stolen the red rose that used to be a symbol of love. Now, in that context it mostly inflames hate.

So why do I love the 2012 logo ?…………….I live in a country where uncontrolled immigration of Eastern Europeans has personally made my life hell, and continues to do so on a daily basis with my housing issues. The bitch upstairs, can say “fuck off” when I shout up that there is water pouring through my collapsed ceiling and down the LIVE ELECTRIC CABLE THAT SUPPLIES HER SHOWER……..but can’t say “sorry” or anything civil. (incidentally I shout up as it has been several years now of this torture and abuse- my first approach was a clear note & diagram…for someone to translate-that met with a very late night threatening visit from her followed by a being surrounded by five screaming Russians as I tried to talk to the landlord(who does fuck-all). Since seeing the violent attacks on gay people in Russia recently, I have to wonder…

Her friends park with impunity on the zigzags for over 24hours…play music so loud that I cannot hear my tv at the foot of my bed. Piss in the communal areas. Smoke & drink on the stairs and generally behave in a threatening manner. Her and her countrymen have done nothing to give a good account of ‘Russians’.

My own freedom is being eroded day by day by the weird Communisation of Britain with a hint of Fascism- stasi bin men, council spies-to whom , if you complain about anything you are likely to find yourself homeless as they fail to protect you from the very slum landlords they are supposed to police. Very corrupt. Four million cctv cameras, one for every 14 people. Yet try and report something to the police & the civilian staff just treat you with aggression. Ridiculously I may even have to get a cctv camera for myself to spy on the sita bin men….well if you can’t beat them, turn on them !

Day after day the Government, set one section of society against another, only since their Welfare Reform media frenzy attacks against long-term sick & disabled people have I been so desperately worried I’ve contacted the Samaritans.

I’m a big Olympic fan, in fact I insisted on being in London for the announcement.


Britain a true Olympian…………….
Faster to invade foreign countries- Longer detention for “guilty until proven innocent” prisoners, - Higher utility bills and cost of living for the poorest than ever before-

So, as soon as I can lay my hands on a few logo badges I shall wear them with pride- as they really capture how persecuted I am feeling in my own country.

Tesco Pharmacy Fluconazole and ME/CFS Ignorance

TESCO Pharmacy- FLUCONAZOLE-
Guaranteed Discrimination if you have ME/CFS are gay or disabled-Tesco Policy ‘Steals’ Benefit By Refusal To Sell More Than One Pack At A Time.
No Wonder People Buy Medicines Off The Net If They Can.

Why does the British government bother to put medications ‘off prescription’ such as FLUCONAZOLE (DIFLUCAN). If the pharmacists like the Tesco one on 28th Feb 2007 act like ignorant little Hitlers, and actually make them harder to obtain. We are doing them & ourselves a bloody favour by NOT going to a GP for a ‘free’ prescription.

At the best of times, venturing into a supermarket is very stressful if like me , you have ME/CFS. The noise, the lights, the illogical layouts, the relocation of items, and the chaos of people moving in all directions when you are trying to cope with it.

My TESCO is too far with no transport, too expensive on the bus £1.50 one way to justify one shopping basket full. (The small town Sainsbury is even worse) So about once or if I’m lucky twice a year I get a friend or a family member to take me in a car allowing me to do a big ‘emergency stock’ type of shop. In case the banking system or the DWP fuck up my money. Or I get ‘flu & can’t get out to shop.

So I asked my family member, while I fought the aisles, to go to the pharmacy for me….and buy me a supply of their own brand (1/3rd price of DIFLUCAN) FLUCONAZOLE- one to take before I restart natural supplements, a spare and two to put in the medicine cabinet-after all you never know when I may have a woman over for vigorous sex- a known hazard for gay women !!

So I wrote down the ‘speech’ for her to deliver to the TESCO Pharmacist. “ ….People with ME/CFS…..low immune system…..candida in the gut controversy that GP’s dismiss……if you take natural supplements, if you can’t afford the £17 for YEAST RAIDERS every month without fail, it works best to completely blitz your body first before you go back to supplements……….” THE TESCO PHARMACIST FLATLY REFUSED TO SELL MORE THAN ONE CAPSULE. Was is ignorance of ME/CFS ? If so then that is disgusting. Was it a God complex….you know, bit of power for someone too thick to do medicine…Was it the assumption that the sick or ‘disabled’ don’t /mustn’t have sex…Was it blatant discrimination……I THINK YES, YES, YES & YES….what else have I to go on ?

In fact the one GP -on This Morning- that I have heard accept the Candida thing…..recommends that the best dose to treat it in the gut is in fact ONE CAPSULE OF FLUCONAZOLE EACH WEEK FOR FOUR WEEKS, THEN CONTINUE WITH HERBAL SUPPLEMENTS/ PROBIOTICS……..

Stolen benefit ? How do I justify that statement…..well, if we can’t get a proper supply from a supermarket at under £5 a capsule, compared with the cost of branded DIFLUCAN at over £12. Then I’ll have to either struggle each time on the bus, putting it up to £8 each…a huge effort when you have ME/CFS….I want to use my energy to give me some quality of life - not waste it on that. Or traipse around a few Independents at £12 each.

Funny really that they are only too happy to sell you dozens of bags of crisps, no questions asked….that are sure to shorten your life, but get very precious if you want to improve it ! About time ME Association, Action for ME & Patricia Hewitt at the Department of ‘Health’ started kicking a few doors down with ignorant, discriminatory pharmacists.

People with diabetes, HIV/AIDS, cancer get repeat prescriptions for fluconazole avoiding the hassle, humiliation & inquisition……..but yet again, having ME/CFS we are treated like shit…..just another day in paradise !

Royal Mail To Scrap Street Collections ?

Royal Mail- Secret Plans To Scrap Street Post Boxes ?

If you have a Post Box near you, keep a close eye on it. My nearest pillar box clearly has a label professing that the 6.30pm collection is the latest in this area. All well and good. That is, unless you pop down at say 5.50pm to post your letter in good time for the 6.30pm last collection, and you will see the collection tag has been changed to say the next collection is the NEXT DAY. Now I’ve been keeping lookout and I know the tag on my post box is changed about an hour BEFORE THE LAST COLLECTION ACTUALLY HAPPENS…….result……..you may panic, assume you’ve missed today’s collection and start driving around or walking to the sorting office. Totally unnecessarily. You are being manipulated to destroy your own street postal collection.

You lose confidence in the ADVERTISED collection time, because every time you get there in good time you are lead to believe by the EARLY TAG CHANGE, you’ve missed it……….Result, your lack of trust means you go straight to the sorting office or you post your letter much earlier in the day……but guess what……that’s the idea. Less and less people trusting a collection will actually be made at 6.30pm –fewer use it. Justifying the Royal Mail plans to ditch the Post Box altogether.

If you notice this devious manipulation on your Post Box, get evidence, -digital photos are ideal as they have dates & times. Send them to POSTWATCH.

HSBC premier accounts-Alliance & Leicester beat you to it

HSBC “premier service” for Rich Only- No Alliance & Leicester beat you to it …A& L Basic Bank account holders are not permitted to use counter services unless a transaction is at least £250

Alliance & Leicester jumped on the Government Basic Bank Account bandwagon a couple of years ago when people like me were FORCED to have benefits paid into a bank account.

Alliance & Leicester were one of the few boasting you could make withdrawals at branches and Post Offices, and a local branch was near to me….., I opened two (the Government falsely implied different benefits can be paid to different accounts –mine’s made up of IS plus another bit as I’m long-term sick, written as if it is two different items, but apparently as it’s paid by the same office it’s only one)-the idea was to have part paid to one account and the much smaller amount paid separately as a little bit of savings/safety net in case of theft/mugging -)within months of the Government deadline for all benefits to be paid to banks, I had a letter from A&L saying that only customers PAYING IN OR WITHDRAWING £250 IN A SINGLE TRANSACTION WERE ABLE TO USE THE BRANCH COUNTER.

So being on benefit my only way to ‘save’ now is to collect my coins in bags & pay them in at a post office ….for which I now have to either walk 15mins to a small branch or stand in a queue(no seats) of about thirty people….and have the displeasure of being incompetently ‘served’ Post Office Counter Clerk Eddie the eejit ..who shows the Disability Awareness of a Dalek …more about him soon! Having ME/CFS, for me personally, if I can get out of bed and leave my home & face the stress of a Post Office visit, generally it is easier to walk further & have a shorter queue than have to be stood in a ten minute queue with smells & noises & people coughing all over me, then I have the lottery of staff who WILL NOT FOLLOW A CLEAR LIST that I’ve pre written as ME/CFS brain fog makes even asking for simple things very stressful. So much for Disability Awareness Training….Incidentally, that Post Office branch when I asked for the name & address of their Disability Awareness Training Officer looked at me blankly, and handed me a Guide To Postal Services.

Frankly, with Alliance & Leicester their service has been appalling. I wrote about the security registration saying I didn’t want internet or telephone banking as I don’t have a landline & I can’t cope with using phone calls but I was still forced to set up both. I tried to use a call box as it is more secure than a mobile (I was so stressed about having to do it I was self harming in the months and days before) but they refused. So I went into the branch and they told me I could sit in the foyer & set up my passwords etc over their phone. I complained to the branch employee that there was no privacy & customers all around. So the employee said…”well, when they answer the phone don’t tell them.” Obviously I did…so I was put in an office.

If I wasn’t so frightened about the mental distress of the hassle of trying to get my benefit paid by DWP into a different bank, I would do it tomorrow.

As luck would have it, a few months after this bombshell & appalling A&L ‘customer service’ someone from a market research Polling company knocked on my door to do a financial survey……oh how I enjoyed telling him where I bank, and that yes I would change in a heartbeat if I could cope with it and no, I would NEVER recommend them as a bank to anyone else.

NHS Dentist- 2007- Health Decay in the UK

NHS Dentistry- 2007- Health Decay in the UK
It shouldn’t be like this- Patients endure pain & have to resort to treating themselves. Try getting proper access with the language barrier. Try having an ‘invisible disability’.

I know I should feel very lucky that I, unlike many others, actually do have a dentist. I’ve been with this one (thanks to a social worker friend) for about 18months. One of the imported ones. Fine if you are healthy & never have to try and make yourself understood. A broken tooth is visible…an underlying health condition or an ‘historic’ problem is another issue entirely.

The plus….well it’s the first time a dentist has bothered to shake my hand. Nice. Aside from the fact I was then punched in the face three times because of faulty equipment-the gun thing that squeezes the plastic filler-it kept collapsing & the nurse urged him to stop but he carried on twice more slamming his fist against my top lip each time.

The minus…..the language barrier is a nightmare. How do you explain in words with the complexities of English “ I have ME/CFS …….it is advised that I should NOT have local anaesthetic with added adrenaline (apparently some of us collapse & die)”

Well, you try, but sitting in the waiting room for a check up not knowing if you’ll need a filling….you sit there shaking, feeling sick, I’m not afraid of dentists but when I have to face the stark choice….get drilled with NO PAIN RELIEF WHATSOEVER…..or play Russian roulette it’s stressful. No- it’s terrifying. It is possible, but you have to be in the right frame of mind. There’s no advocate there to sit in and look after me. You fill out the bloody questionnaire in detail yet after something like four appointments, yet again I stressed I have ME/CFS……..getting here is exhausting, the slightest abrasion in my mouth and my glands come up. etc etc “ oh I didn’t know” he says. I’m not quite sure what he suddenly understood, because you cannot have a flowing conversation. Yet every visit….two check ups and two broken tooth repairs- I always remind them.

The Government, supposedly said from 2006, only white fillings will be used. No amalgam. I asked in advance, summer 2005….the nurse(she’s gone now) said ”we haven’t been told.” Understandably I was very keen to insist if I needed a filling before then, that instead I’d try and wait until it came in. I don’t need any more mercury in my body.

It’s that time again-the dreaded routine 6mth check up……yet this time just as I had to do with my optician last year(Specsavers rush you & frankly have no Disability Discrimination awareness, let alone data protection awareness-but they are another story for another day), I have felt it necessary to write in advance, prior to my appointment, in the hope that someone, will listen to my concerns, so I feel understood and can access proper treatment.

A month ago, a wisdom tooth started coming through some more, but in the process the surrounding gums became, unbelievably inflamed and sore. Painkillers wouldn’t touch the pain. Nothing would relieve it enough to get any sleep for several days. I could neither open nor close my mouth more than 1cm.

After four days, maximum dose of paracetamol,(2 every 4hrs max 8 in 24hrs) would just give, after about an hour a slight reduction in pain enough to get a short period of sleep. Then I realised massaging along the gums firmly released firstly pus then small clots of blood. But it started to give some relief and I figured better out than in. Well this twice daily routine I have continued, and it is still producing some blood but it feels as if it is keeping it more clear than if I let it pool.

So it’s almost a month later from the original agony, and the major soreness has gone BUT I know from the weird taste & smell that it is still infected. I know I need antibiotics to help my body fight it off. I don’t know if like our Police Community Support Officers who can’t arrest anyone, these imported dentists can do the whole job or just part of the job……imported doctors and nurses often have restrictions-and rightly so- but where the hell does that leave me ? There’s never anyone to protect us. There are never any leaflets telling me my rights, telling who to complain to or get reassurance from. To tell me what the protocol is in varied situations.

I know that I cannot in the short time available, even without the language barrier (technical language accomplishment does not translate to understanding the nuances of the history a patient is trying to impart)be sure I have been understood. The absence of a reflective reply, leaves you unsure how much if ANY of what you have said has been received and understood. It is added stress I don’t need.

I’ve resorted to writing the history, and posting it ahead of my appointment…….in the hope that someone who can fully understand what I’ve written and who can write a prescription will make sure the dentist who sees me will be fully informed on all issues. I shouldn’t have to do this in order to get treatment.

I suspect I’ll find nothing has been done……despite the fact I’ve put the onus on the receptionist to make sure the letter reaches a senior dentist(or at least that the person I’m seeing has sufficient time to fully grasp what I’m saying)
prior to my appointment.

I may find by the end of the week I’ve been struck off the list ! If that is the case I WILL USE THE DISABILITY DISCRIMINATION ACT.

You know what, I’m just starting to think that perhaps the DDA means just that ?....oh what an idiot I am……it means they can/and are encouraged to discriminate against us. Oh well that explains it.

I am sick of having to fight at every step for the basic equal access to services. Now we know why ……..

BLAIRSTAPO BRITAIN X-ray Lampposts CCTV

BLAIR-STAPO BRITAIN -X-RAY CCTV IN STREETLIGHTS…pro BNP ?

My Great Grandfathers did not spend years in the trenches in France to put up with this shit. For those of you unfamiliar with Blair-stapo Britain….

We are the third most spied upon citizens in the world. CCTV s everywhere, yet is there a police officer to call in an emergency…? DNA database….oops hundreds of thousands of innocent people now will not get their details removed as was promised. Children are being fingerprinted in school. Child database. Eavesdropping street microphones are to be added to the ordinary CCTV cameras. Voice sensors. ID cards. Compulsory computerised Medical Records.(only those who can PROVE the system will cause them substantial mental distress will be exempt…catch 22) Forced treatment of those with untreatable mental health conditions…just in case they commit an offence (in Australia this legislation has been widely misused to section mildly depressed people.)And now x-ray cameras are to be hidden in lampposts….Oh and some bright spark invented a blood test called proBNP…..imagine the horrendous crimes committed by the state, yet to be perpetrated against the innocents with this blood protein indicative of heart disease risk. The mass linking of databases will label those with this blood test result proBNP as being racist Nationalist supporters of the British National Party ! No doubt the forcible photographing of everyone’s bedroom , living room by Council Tax Valuers will lead to digital enhancement for the purpose of seeing what books are on your shelves and what pictures on your walls.

There’s only one thing more scary than more years of Bush and that would be the thought of Blair as President (the Yanks who want that are more deluded than he is… thank the Lord for some rules- though he is under pressure from the ongoing criminal investigation into secret loans & the awarding of Peerages-Purer than Pure he said on taking office in 1997)…. ….He mouthes off about ‘green issues’ but along with continuing decimation of the rain forests, it seems certain other areas of more urban greenery seem to have disappeared….I think we may know why !!

Is it any wonder we are eating ourselves into an early grave ? In just one Primary Care Trust in the South we hear TWO Chief Executive whatevers have been paid off HALF A MILLION POUNDS (one did about 2 weeks work for it). You have to wonder if the PCT personnel dept are incompetent at hiring or are the Executives incompetent ? or…as I suspect are there certain people, in that PCT that make it impossible for others to work alongside ?

The prospect of a quick, final massive heart attack is certainly a more attractive prospect than being given a gamut of tests to determine the finer points of a cancer then being refused the appropriate drugs on cost.

I’m not religious, but God Help Us All.
For me Hillary Clinton is a glimmer of hope for the future, glistening on the horizon….roll on 2008.

America….this time when you vote, think of THE WORLD and how it sees you. You owe us big time. Fulfil your potential for GOOD NOT EVIL. You have bridges to build; for once recognise that the hand of kindness, a woman’s touch is what’s needed now.