Paralympics showcases new government proposal for ill and disabled homeless.

So now we know – it was clear from the very opening of the Paralympics ceremony that the ill and disabled of Britain are to be given free umbrellas to shelter from the hard rain of Welfare Cuts and the resulting homelessness of having their benefits withdrawn.

I for one will be jolly grateful to get such a bumbershoot under which to shelter when my current ESA claim fails to provide me with money to eat and pay for the part of my rent not covered by housing benefit which I will also lose because I am not well enough to comply with the rules of JSA.

I would like the BIG UMBRELLA so I can fit a few other people in as well. If anyone can tell me how to claim one of those it would be very helpful indeed. I’m a little worried that the smaller samples of single-unit umbrella living spaces might not afford me the coverage necessary for my continual need to remain horizontal without feeling too unwell and, thus, passing out. And as you know from the 80’s the rich and powerful get quite annoyed if they have to step over passed-out homeless people on the way to the opera.

Not Being-in-the-World

When you have been ill for a long time; I mean really ill and in pain – not being able to go and visit friends in years kind of ill - it is hard when you do finally see one of those elusive friends.

If they are a good friend, even one you only see every 6 months or every year or not for years on end, it is exciting to hear of their news but it is also hard. It is painful. It reminds you that there is a big and wonderful world out there that you are no longer part of.

Today I spoke on the phone with a good friend of many years and she was full of exciting news about all the marvellous things she is doing and they do sound fabulous! It is not that she has not been through very hard times herself or know what it is like to be caged for a while and that she still doesn’t have a lot of hideous things to deal with but, whilst she has a lot of painful things to deal with, she is also in the world. She has fantastic adventures to pursue.  She isn’t trapped in a crummy rented flat for months and years on end unable to go out and enjoy all of the wonderful and exciting things the world has to offer.

This is not a ‘woe is me’ situation, it is just that there is a vast gulf between our lives now when once there was synchrony and fun and the real connection of shared activities.

I sometimes think that if all of my old friends made a list of what they have managed to achieve over the last 16 years that I have been ill and I did the same the gulf would be startling.  

This is what long-term chronic illness does. This is what being largely housebound does. It robs you of that connection to the everyday world of just being able to do 'stuff'. It prevents you being an free agent in the world and making plans that you can follow. Nobody plans to be ill for most of their adult life. Nobody chooses it and only a fool would stay caged if they had the chance of freedom. 

Over the years peoplevanish. Most entirely but a few turn up once in a while and when they do reappear it is like a splash of colour so bright that it is painful to look at.

When you do see them they tell you tales of the world outside illness and you, in return, say what? What is there to say apart from ‘it is hard’, ’I am still ill’, ‘I am trying to sort out my benefit claim’,’ I have done nothing exciting or interesting at all’, ‘my life is just survival’... and over time this, I imagine, begins to be very tedious to people who once found your friendship interesting and enjoyable. Maybe they wonder where you have gone. Maybe they think that if you only tried harder you could be that person again – that time can somehow be reversed or that there is a way for you to move forward that would give you more stimulating topics of conversation. 

For a long time I didn’t really tell my friends how my illness affected me. When I talked to them I talked about their lives and about the world in general and about politics and music and books but not about my actual life and the difficulties of having such a contentious and difficult to explain illness. While I did that, they seemed to stick around. Once I decided that this was not okay and that I had a right to really tell them what it was like, just as they are able to talk about their lives, something shifted. Maybe it is too uncomfortable to hear the truth. That is often true whether people are ill or not. The truth is often painful and difficult.

This is why people with severe and chronic illness that goes on for years or decades without relief tend to, in my experience, stick together. They tell each other the truth and are willing to hear it however hard it is.

I never expected to make a strong new friendship at 39 but that is what happened when I met someone online who happened to live just down the river. Like with my other friends we see each other very rarely – it is even harder to meet up when you are both largely housebound. I can count on one hand the number of times we have met over the last 5 years. The difference is that she ‘gets it’ because she too lives it. We speak on the phone and swap books and films and ideas in the way I used to with my ‘out-in-the-world’ friends. There are a few others who are also afflicted with the dreaded malaise that I talk to – they are also my new friends. 

(Nb. Never tell an ME shrink that – they think talking to other people who understand is bad for your health – under what other condition would that apply?) 

I am lucky that I can do this. Many people are too ill to have any contact with the outside world at all. One USA M.E. clinician said the severe cases are as ill as end stage AIDS and cancer patients but this goes on for years or decades - and ME like other serious illness does, eventually, kill people. I still remember what that was like - to be in a dark room, vomitting,  too weak to turn over my own pillow, my partner having to help me to piss in a bowl in the bedroom. To misquote Bette Davis ‘being severely ill is not for sissies.’ 

For those who want other more cheerful topics of conversation, this week I have:

• ·         Thought up wild and fantastic art projects and fantasised about being well enough to make them  real
• ·         Read a generic crime novel
• ·         Taken more pictures of corners and walls
• ·         Picked this month’s topic for a photography theme on the only online forum I can cope with
• ·         Tried to learn to use Twitter
• ·         Wiped up a lot of cat sick
• ·         Decided that, given the PACE trial already has a Prof. White, that I should name all of those involved after Cluedo characters – see it’s hard not to mention it at all.

Yours truely,

Gregor Samsa

Remember, It could be You!

Today has been, let’s call it, interesting.

I have my ESA form to fill in. Most people are blissfully unaware what this involves.

What it involves is thinking about every crappy symptom you have and how it affects your every waking moment and your inability to do the things you would like to be doing, and then writing it all down in immense detail to be scrutinised by a faceless bureaucrat  who then decides your fate.

If they believe what you say you have a roof over your head and can eat for a little while longer – if not you are homeless and starving. And remember you are still very ill while being homeless. 

You can’t even claim JSA if you are really ill because if you need to be well enough to attend the Job Centre and apply for jobs. And well enough to take one if offered. And of course if you could do that you wouldn’t already be submitting yourself to the hell of Disability Assessment in the first place. You would have to very masochistic to want to do that if you are capable of work and should probably seek urgent psychological help.

‘So’ the healthy ones are inclined to state ‘people in other countries don’t get state aid’ – ‘well’, I reply‘, ‘they either have a family who helps them or they die’. And why the race to the bottom all the time?  – bear in mind every time you say such a thing that it could be you!’

‘So’, they declare ‘surely if you really are that ill there will be much medical evidence that proves it’ – well, I respond, ‘that depends on what your problems is and aren’t you naive about the current status of medical science – lucky you! You haven’t had to discover that it isn’t as perfect or sophisticated as you like to believe. And remember – it could be you!’

Today, I have cried and screamed and been in despair and deep dread about what will happen to me if I can’t work out the right way to fill out the form – the magical way that puts me straight in the Support Group without having to effectively enter a legal battle with me on one side and the State on the other.  I am simply not well enough to engage with that and I will, thus, be homeless and still ill.

Today was also the day that journalist Sonia Poulton https://twitter.com/SoniaPoulton  wrote a letter to Ed Miliband about the way the government are treating the sick and disabled and asked him to man-up. Come on Ed – take a fucking stand. You can sign the letter is here: http://ramblingsofafibrofoggedmind.wordpress.com/2012/08/01/open-letter-to-ed-miliband-please-add-name-and-postcode-if-you-agree-with-contents/#comment-523

 

The Google site it was originally on crashed within hours and there is currently speculation that it has been hacked and taken down – hopefully there will be non-speculative news on that later.

It is something that every person in Britain, who has ever been ill, knows somebody who is ill or thinks that they could get ill at some point in their life should be signing. Remember – it could be you. Actually – at some point it almost certainly will be you.

Employment Minister, Chris Grayling, tried to have a Ministry of Justice video explaining how to deal with ESA appeals taken down – it kept moving around and disappearing over several days – of course everyone had made a copy – that is the power of the internet Chris! Finally even the Daily Mail picked up on it: http://www.dailymail.co.uk/news/article-2181978/Chris-Grayling-accused-trying-censor-disability-benefits-self-help-video.html

Yes it could be you who becomes chronically unwell or disabled and needs to be assessed for benefits. If you are one of the lucky ones who doesn’t know what this means I suggest you take one hour out of your lucky non- ill, non-disabled life and watch Panorama ‘Disabled or Faking it’ : http://www.bbc.co.uk/programmes/b01lldrc and Dispatches ‘Britain on the Sick’ ; http://www.channel4.com/programmes/dispatches/4od  both of which, I believe, are available for the next year.

And finally some late breaking news specifically for those lucky people with a diagnosis of ME or Chronic Fatigue Syndrome (CFS), or ME/CFS or CFS/ME or CFIDS or whatever they decide it, or the many illnesses rag-bagged within it, should be called next.

Last year the results of the ONLY medical trail ever funded by the Department of Work and Pensions (DWP) claimed that Graded Exercise Therapy (GET) combined with Cognitive Behavioural Therapy (CBT) were effective for CFS/ME (actually, Prof. Peter White later claimed they weren’t studying ME- but as CFS is a synonym for it and indexed to it in the World Health Organisation International Classification of Diseases that must, logically, mean he wasn’t studying CFS either – so what was he studying at a cost of 5 million pounds, almost the entire research budget for the disease(s)).

Just after 10pm the ME Association told it’s Facebook followers there was going to be ‘NEWS’ – I was forewarned it was bad – most weren’t – they were ultra hopeful as almost everyone with ME is every time there is ‘NEWS’. They were badly let down. The news was that the absurdist government hench-people that run the PACE Trail have now done a cost-benefit analysis and declared it to be the most ‘cost-effective’ treatment for CFS. This is hilarious/horrifying to anyone who has read the original findings and understood the nefarious fudging of statistics involved.

For example – the people declared better were still unwell enough to be readmitted to the trail at the end of it. In the original research protocols we were to be told about ‘return to work’ and ‘actometer’ improvements. They were left out of the results because the results were so poor that nobody with a brain would think this is a ‘treatment’ for CFS let alone ME or ME/CFS etc.... The mind truly boggles.

More information here: http://evaluatingpace.phoenixrising.me/homepageanim.html

When the results were published the press had its usual idiots parade of dumb headlines like ‘ME – just go out and exercise’ – all handled beautifully by the ever spinning institution that is the Science Media Centre which is partly funded by the institutions involved the study and aligned to it. Lets hope we don’t get the same idiocy this time round.

Several CFS clinics run the PACE protocol and help to feed more fudged data in to the ongoing results. I, unfortunately, have been attending one and have seen the slight of hand with my own eyes. That is a whole other story.

So, yes, today has been interesting, and misery-inducing and anger-making and tomorrow I have to get up and deal with continuing to try to fill out my ESA form.

May everyone get what they deserve,

Gregor Samsa