Tell me something positive…

One of the realities of living with a chronic illness, is that it never goes away. It’s never far from your thoughts, as its always affecting some part of your body. Much of your day is taken up with making accomodations for your pain and fatigue; gagging back multiple different poisons in the hope that one of them has the tiniest positive effect on your body while pretending the side effects arent potentially worse than the condition it’s meant to treat; visiting numerous different consultants who never seem to communicate with each other; GPs; nurses; physios; OTs; social workers… the list is endless and so are the rounds of appointments. I can sometimes go a whole week with no appointments, and then I’ll have three or four, in the one day if I’m lucky, on different days of the week if I’m not and this often happens every week, not just once every 6 months. Try fitting that in around parenting a 4 year old, caring for my aged grandfather (and taking him to his hospital appointments), studying for a law degree, being a partner, being autistic on top of all that, with no respite for my overwhelmed mind.

And through all this I’m expected to keep quiet about it all. I’m expected to remain cheerful and not talk about my day because it upsets others. I’m supposed to pretend my life isn’t one big pile of shit because other’s are uncomfortable hearing about it. I’m supposed to slap on a fake smile to keep those who aren’t ill happy, because they don’t want to hear about my day when they ask.

Well here’s a word of advice to all those of you who think the hardest part of their life is having to listen to me recount my day which isnt always very positive, don’t fucking ask how i am if you don’t really want to know.

I’m not going to lie to make you feel better or less uncomfortable. I don’t set out to make you feel uncomfortable when you hear about my day and maybe you need to look at yourself and the privileges in your life when you do feel so uncomfortable about hearing about my day that you want to shut me up.

I’m not going to pretend that your arthritic big toe is the same as having every joint and organ on the right side of my body so painful codeine no longer touches it, while still ending up zombified and incapacitated by the sedating effect the medication has. I’m not going to compare that one day you took off work with diarrhoea to my daily 4am crippled-in-pain wake up call hoping i can make the loo in time without shitting myself, and then having to go every 15 minutes for the next 6 hours. I’m not going to think theres any comparison between being tired after a day at work in a cosy wee office is anything like full body fatigue that *never* goes away whether i’m active or not. I’m not going to agree that your smokers cough is anything like the 6 week flooring I get when you splutter your germs all over me because I have a suppressed immune system. I’m not going to contemplate that your vanity about wearing reading glasses is anything like my fear of losing my sight in one of the most prolonged and physically painful experiences I’ve ever had.

I’m not going to say something positive about my day because you don’t want to hear the reality of how my daily life is – mostly because there are huge swathes of my life where there is nothing positive to report.

I’m sorry I cant be the person you want me to be.

I’m *more* sorry I cant be the person *I* want to be, but I often think that doesn’t cross your mind.

I’ve lost count of the number of times people I care about and respect have asked me why I “want” to be like this, as if having a chronic illness is a lifestyle choice I made. I’ve heard this from family and from professionals with alarming test results in front of them. Nobody would choose this as a way of life. Nobody would want to have to justify to society their existence, be that because the medication made them obese, or causes their long thick hair to fall out in clumps. Nobody wants to have to justify why they’re not working, whether or not they are claiming social security. Nobody wants to have to justify the reason they take one parking space over another despite “looking normal”.

I shouldn’t have to justify why I can’t be positive all day every fucking day.

I wont pretend it doesnt cut like a knife every time someone asks why I cant be more positive about my life. It’s as if they just ignore what I’ve said. And the funny thing is, I’m not depressed in the slightest. My mental health is doing surprisingly well. It would be a cruel twist of fate for that to pack in too. Yet it would be more acceptable for the people I know, friends, family and medical professionals, to attribute my negativity to a mental health condition rather than actually admitting that at times, because of a (series of?) chronic physical illnesses my life is shit, and that there is nothing positive to report.

Well I’m not sorry for the way I am. I’m not sorry for being negative about how my life is. You wouldnt get a metre in my shoes let alone a mile without moaning about it. I’m still fucking alive in a society that would rather I was dead. How’s that for positive?

***this was in response to a phone call with my mother and seeing someone post something I connected with on the abledpeoplesay hashtag on twitter

A new romance

As I place your long, slim, stiff, shaft
Deep into my dark, damp canal.
I writhe in blissful pleasure.
My knees go weak.
My legs cannot take the weight of my quivering body
I struggle to maintain composure
I don’t care if our physical love is forbidden,
Nothing can keep us apart…

Oh cotton buds how I love scratching my ears with you.

Modern friendship?

Person 1: You will be my friend if you like green, but I won’t be your friend if you won’t declare you hate purple.

Person 2: Ok, so I like green and I’m a member of the anti-purple league, I’m cool. But you once said something horrible about potatoes and I support potato liberation, so I won’t be your friend.

Person 3: I support potato liberation too but I find green a bit grassy. Can we still be friends? By the way I’m not a fan of Michael Bublé, if you like him we won’t be friends.

Person 4: I don’t like Michael Bublé and I don’t like green but I’m indifferent about potatoes.

Person 1: Then you are my enemy.
Person 2: Then you are my enemy.
Person 3: Then you are my enemy.
Person 4: *returns to real world where life has shades of grey*

No Alarms and No Surprises.

So UKIP have done better in the polls than twitter lefties had hoped. Are we really surprised?

For the past 6 months and more especially in the past 6 weeks, UKIP and their leader Nigel Farage have been the media darlings of the UK. We’ve seen him dancing with…. *shock horror* foreigners! He’s been on BBC Question Time more often than Dimblebot himself and everyone seems to want a piece of him and his xenophobic policies. Even bad publicity surrounding his nazi supporting candidates (pretending to be plants apparently) doesn’t seem to have done them any harm. Indeed it is likely to have gained some BNP supporters who are looking for a party with a less publicly toxic image, even although UKIP claim BNP members are barred.

As has been proven time and time again, the inhabitants of Britain get their political information from the biased mass media. With the Daily Mail being Britain’s most popular newspaper, this does not give us much hope of impartiality with the news the British public are subjected to. So are we really surprised when a party as potentially dangerous as UKIP do better in the English council polls than the Lib Dems or Tories?

Actually, if I’m honest, YES. Yes I am surprised, and saddened. I had hoped that the British public could see through the type of buffoonery and charm that does Boris Johnson no harm at all. It seems this was beyond the mentality of thousands of English voters. I say English because Scotland was not voting yesterday and Wales seems to have avoided similar results. I’ll be curious to see how they do when it’s the turn of the Scots to go to the polls.

I’m saddened because people are so easily fooled into blaming everyone else for the problems of their home country. For many, UKIP are merely an anti-European party. They have won many votes of alleged rational human beings with their promises of getting the UK out of the European Union, without considering the benefits being part of this union has had on the UK. They can blame Europe for all the problems of the UK economy but given the global nature of the economic collapse, I think they’re being somewhat short-sighted. This EU element, of itself does not bother me, UKIP will never get enough votes in Parliament alone, to be able to effect such a policy alone (however in combination with the Conservatives this could be a worry). So those voting UKIP into local council positions based on their European policies have been duped as to the power they can have at a local level.

What does bother me are the growingly accepted UKIP xenophobic attitudes and policies. In the Channel 4 video (linked above) Farage is shown giving the hard sell to Bulgarians of the benefits of life in the UK, and they’re still not interested in coming here. Even in the face of this blatant evidence to the contrary, he still believes millions of Bulgarians and Romanians will descend on Britain taking all 400,000 available jobs from our 2.6million unemployed Brits and stealing all our benefits and homes. Even his facts on this are wrong as it shows he doesn’t understand how the benefits and housing system works in Europe, but don’t let that get in the way of a good lie.

The UKIP are getting more support now because despite all the ‘on-the-face-of-it’ niceties, the British are on the whole, a xenophobic nation. We are racist, self-serving, egocentric and self-important. We still believe we have an important platform on the global political stage. We are stuck in a centuries old colonial mindset. we see ourselves as a bigger player than we actually are. It’s actually quite pathetic. We were big players, we damaged millions of lives and ruled 1/4 of all the land on the earth. For all but the wealthiest of Brits imperialism wasn’t a time of glory and indeed it is now considered by many a time of shame. We are responsible for the state we are in now, by our actions of the past. We are responsible for this false belief in our higher socio-political status based on our destructive actions of the past.

In reality Britain is a tiny wee island, full of tiny minded people. We fear the outside world. It’s a typical island mindset that does not fit with our perceived global political position. When one person dares to speak up about their racism and fear of others or outsiders, it gives the usually silent Smiths and Joneses the opportunity to air their fears too. To believe that UKIP are fooling the population into voting for them is naive. UKIP have just given the many racist fools of the UK, stuck in a historic colonial mindset, a voice they have been too scared to allow be heard. I’m all for freedom of expression but when you fear expressing your racist thoughts you have to consider why that may be.

To me all this suggests our education of the masses on equality has failed. There are hundreds of thousands, likely millions who do not conform to the xenophobic beliefs of UKIP, but as we repeatedly witness, fear sells better than future potential and no one dares stand out from the crowd. People are so scared of losing their material possessions and their perceived public position that they will not let change occur or speak out. They would rather have more of the same bad old ways than take a chance on radical change for the future in case they lose their telly and broadband. Look where that kind of thinking has got us. It has got us radical and damaging changes to state and health that no one in a position of power has confronted because we’ve been led to believe it’s in our best interest. Damaging change by those who believe in a colonial existence, those who believe their historic wealth gives them the power and right to dictate to those who do not have the same aristocratic background. They’re keeping their friends safe, wealthy and healthy while we little people get to suffer, and y’know it’s all in our best interests.

And like the fools we are we swallow it. Inequality grows alongside the fear of the foreigner. We won’t consider what immigrants can put into society or the benefits of multiculturalism or even the benefits to our economy, oh no, we shall fear them, hate them and drive them from “our lands”. We shall accuse them of stealing our women, our jobs, our houses and our money. Hell they probably eat our pets and pee on our roses. We won’t stop to consider what we could be doing wrong, merely what the “foreigners” are doing to us. It’s never our fault. Oh no! Never.

So instead of looking to a new fairer future for all, we are reverting to ancient beliefs of racism, fear of foreigners, blaming others for our own faults and taking the perceived easy route to try to solve the problems of our society. Problems caused by everyone but us. We never seem to learn from history. It’s not invoking Godwin’s Law to make a direct and realistic correlation with a situation resembling that of the rise of fascism in 1930s Germany. We may like to convince ourselves we are not gullible enough to find ourselves in a situation akin to that of Nazi Germany in the 30s, but is that really true? Back then the changes were subtle. Enemies were hiding in every nook and cranny. People didn’t trust their own family let alone their neighbours. It was a slow development that went generally unchallenged and it started with mild xenophobia. We all know what it descended into. All it takes is one charismatic person to reach a position of perceived authority to get the ball rolling. In steps buffoon Farage.

We might like to think we’re different from those nasty Nazi’s but are we really? Are we allowing the media to fool us into fearing the foreigner, when in reality the enemy is within? Is the average Brit really jaded enough to believe that a few thousands Eastern Europeans are doing more damage to our economy than the huge division between our homegrown rich and poor? Can those who are already relying on social security to survive (e.g. low paid on tax credits) really differentiate their brand of poverty from those in different but equally as difficult financial situations (e.g. the disabled)? It seems so. Can ‘ordinary’ people not see the damage being done to the state upon which so many rely, both waged and unwaged, while those wealthy and in power making the changes, profit from it all? And yet we blame thousands of hypothetical foreigners who have already said they’re not interested in coming to this sham of a country. We blame the disabled for faking it, who in reality have no alternative to the existence we allow them. We blame Europe, we blame the left, we blame a government out of power for 3 years. We blame everyone but ourselves and our own stupidity. We didn’t educate ourselves properly at the last election and apathy will drive even fewer to educate themselves properly at the next. Do I think things could get worse in the future? Hell yes!

And now we are finding saviours in ignorance and lies. We as a society are politicising on a wing and a christian only prayer. We find hope in a party on the fringes on right-wing extremism with smiley faces and a pint of ale in hand. Good ole British traditional blokes down t’pub. Someone we know and can rely on. Apparently. Our saviours. Apparently.

We have, aided by the media we pay to indoctrinate us, given a platform to a large swathe of people who honestly believe they are superior to anyone with a different cultural or religious background or skin colour. We have given a platform to those who decide a people’s worth not on what they can give to society but what stereotypes are popular at the time. And in our apathy we have not only allowed this, but celebrated and encouraged it, and it can only get worse.

As Douglas Adams once said, “nothing travels faster than light, with the possible exception of bad news, which follows its own rules” – coupled with Winston Churchill’s, “The British nation is unique in this respect: they are the only people who like to be told how bad things are, who like to be told the worst.” We get a picture of the British nation past and present. We are destined to continue to try to destroy our society. We thrive on the bad news. We want bad news and we want something to moan about. I sincerely hope Britain is happy with UKIP gaining more of a voice locally, it will certainly give us something to moan about when society is completely destroyed when they get a national role and by then it could be too late to stop the demise of decency. That charismatic strange little man and his minions will keep those who think different to them in fear and silence while they do their worst to create a more ‘pure’ society, a more self-serving one. Problem is, where does it end? Who decides purity?

Who is doing the diagnosing Esther McVey?

This is the video of Esther Mcvey on Channel4 News discussing DLA to PIP.

McVey seems somewhat flustered, unable to articulate clearly her point, unaware of the realities of the policy she promotes, obsessed with asking Krishnan Guru Murthy to “hang on a sec” and generally talking rubbish.

Much of the online outrage at her talking rubbish, was at her statement on how the government perceive themselves to be treating disabled people “generously”.

But this isn’t the bit that concerns me, neither does her claim of governmental generosity (although if she’s expecting any kind of thanks or praise she can think again)

No! A small throwaway sentence at 3 minutes 14 seconds in, reveals the truth behind the governments disability assessment processes. DIAGNOSIS.

Yup, that’s right the Minister for Disabled People, Esther McVey actually says on prime time national television (3m 14s in if you want to double check) “If we can actually diagnose individuals through their historic data and their medical data…” Think about that for a moment. Think about the sheer arrogance of that statement.

If WE can ACTUALLY DIAGNOSE INDIVIDUALS through their historic data AND their medical data…

Now what set of well trained professionals do we expect to have the knowledge, skills and experience to be able to undertake such an important, life saving task as diagnosis? Who are “we” that do the diagnosing?

Prior to that statement McVey is discussing face to face ATOS assessments and for those with degenerative conditions, paper only assessments. So could “we” be the ATOS IT system or the DWP decision maker? Are they now responsible for diagnosing conditions? Are we now to send all our medical data to a civil servant for diagnosis? What training will this person have in identifying conditions and appropriate treatments or supports?

There are times I experience exacerbation with the medical professionals I see, where I wonder if an average bloke on the street wouldn’t do as good a job, but would I put my life and future in their hands? Would I hell!

I can imagine any official response to McVey’s statement being along the lines of ‘slip of the tongue’, ‘wrong choice of words under pressure’ but this is a professional woman, employed in her ministerial role to be able to clearly and confidently articulate the governments position and to be able to do so under pressure. With this in mind her choice of words regarding “diagnosis” is telling. I’d place bets on the use of diagnosis being a commonly used term in government corridors and meetings. Through the week McVey had already outraged others by talk of “healing” people and now these ministers and MPs, these jumped up civil servants, pen pushers and office workers, actually believe they are responsible for diagnosing people who ALREADY HAVE MEDICAL DIAGNOSES.

Diagnosis and cure by the government with their policies? HALLELUJAH! Praise the House of Lords! It’s a miracle.

You don’t get DLA based on just filling out a form. You need to provide contact details for ALL the professionals involved in your treatment and care. Your GP, your consultants, any nurses, care workers, support workers, social workers… If you can plan in advance and send in their reports with your application, it makes the process somewhat easier but decision makers are still meant to confirm the accuracy of the reports themselves. Decision makers are not there to diagnose a condition and I doubt their abilities to treat or heal conditions either.

So what exactly are the government planning? We already know what they think of the NHS. We know that in time, treatment and diagnosis will only be for those who can afford it. We know that people unable to work through sickness or disability are already labelled “work shy scroungers” and that society has cruelly turned on them in an attempt to cover their own backs.

Is this the first publicly admitted sign of a government led two tier health system? Those who “strive” get doctors and medical diagnoses at a price but those who cannot get an ATOS/DWP penpusher diagnosis? I know, I know all a bit woooooOOOOh conspiracy theory but what else are we to think when a government minister is on national news saying THEY will diagnose?