A short poem about Gaia being angry.

Since I decided to try to get off of the diazepam at the end of 2017 I have not been up to writing much.

I have not been up to concentrating to write very much of anything for years and, however hard I tried, I simply couldn’t concentrate long enough while lying down to finish anything of any worth.
I have dozens of notebooks full of ideas that will remain unwritten. It makes me sad.

In 2016 I wrote a few short poems and last week I managed one extra.

April 2020:

On Hold

Today the sun shines

And the roads are quiet.

The planes sit heavy on the ground,

The air is clear and sweet.

Except...

There are no children playing in the street.

And dogs are growing wild at windows.

The shop girl’s hands are weapons.

I watch the apple pass from hers to mine

And place it in my bag like a grenade.

As nature goes about her work.

The world is holding its breath.

I will post the others separately.

Beauty in the Grime Part 1: Reflections

A good few years ago when I was having a good day I would sometimes be able to get the bus back from seeing my physio and any chance to be outside in the world was, for me, a chance to try to find something beautiful or odd in the world to take pictures of. I had several themes at the time that I would try to expand up on and one of them was reflections. There was something interesting to me about looking at things ‘askew’ reflected in windows and glass.

Waiting for the bus, for me, was an odd experience because I didn’t get out much let alone have the chance to see ‘normal’ people going about their work and talk to someone other than my ill friends on the phone or my love, the only person O regularly saw in the flesh. You get very strange looks when you take out a camera and start taking pictures of the bus shelter on an industrial estate. People are unable to see what you see with your eyes so long unaccustomed to the outside world. They, of course, take it all for granted and see only the functionality. They don’t see what is right in front  of their eyes and most of the time their eyes are looking at their phones anyway.

My eyes saw the reflections in the dirty glass of the bus shelter, the bright light of the beacon at the level crossing, the tree in the concrete and, when holding up my camera the reflection of it in the glass like a low incongruous moon or the sun behind clouds.

All it took was a little colour adjustment and some cropping for the ordinary world to become fantastical.

And, once on the bus the reflection of the inside of the bus in it’s own grimey window was just as beautiful to my eyes so sick of looking at the walls of the flat I was normally trapped in and in which I will most probably die in quite soon.

That is why I am trying to post these here now. So that something of the world I saw still exists after I am gone. So that there is a record of my mind before it was destroyed by trying to come off of the Benzodiazepine diazepam that I was prescribed for 20 years for spasm following spinal surgery without any warning that it could damage my brain and cause a physical dependence that can literally destroy every part of your body and brain once you try to withdraw from it (and sometimes while you are still on it in tolerence withdrawal aspects of which I now realise I have lived with for years) and that that destruction can take years and years to repair if it can at all. 

There is no beauty for me in anything now because the withdrawal has caused ever perception to become terrifying. The whole of material reality and every sense impression from all of my senses is now a torture. Even typing this on my tablet is terrifying, the feel of it against my fingertips is wrong, the feel of the whole world including my own body is wrong and frightening, the flat keyboard looks ultra 3D and as I press each key it jumps out at me a a thousand miles an hour causing my heart to thump as if I will explode. My garden is terrifying and repulsive to me, everything is chaos and death, everything is gothic horror. Trees seem too alive and too dead, simply looking at the complexity of their branches causes my brain the kind of terror you might feel if you walked into you house and there was a large man with a massive knife waiting there to hack you into tiny pieces. The whole world is like that to me. I am literally terrified of the feel and sound and thought of my own pillow.

While the loss of beauty and the terror of the whole world is almost unbearable I do believe those things are from the withdrawal and, given a few years, might resolve but that is probably not the case for the muscles now crushing my body. That is why I was seeing the physio in the first place all those years ago and he nor anybody else has ever been able to work out why the middle of my back went rigid after a disc herniation and surgery at L5/S1. Nobody has ever been able to work out why that makes my head heavy and why it has prevented me from being able to sit without great effort since then. Now, without the diazepam or any other medication I can also not find a position to lie in that is bearable. 

It is a desperate place to be but once I saw beauty where nobody else did. That was who I was. Someone who tried to find beauty in the grime and hope in each useless day. Right up until 2018 when I tried to reinstate the diazepam and it no longer worked but, instead, caused new horrific paradoxical symptoms I thought I would find a way to be well and have more of a life.

Look for the beauty wherever you are. It is right in front of you if you look hard enough.

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

'How many fingers am I holding up?' or call me Gregor Samsa part 2

The month long 'news' story that a few very pissed off people with a diagnosis of ME/CFS are issuing death-threats to scientists continues.

I have tried to ignore it but have finally given in and responded.

Response to : http://theness.com/neurologicablog/index.php/science-by-intimidation/

With regard to ME/CFS there is a lot of ‘lying’ going on at the moment.

The story about a handful of the estimated 17 million people world wide with this as a diagnostic label has been doing the news rounds for about a month now and has become more and more flamboyant the longer it runs.

The argument is made that some people with ME/CFS don’t want to believe that the illness they have is ‘psychological’ because they find it stigmatising. This is a complete misnomer and has been spread by the very people that want to classify ME/CFS as a ‘purely’ psychological disorder that should be treated ‘purely’ using psycho-social treatments such CBT and graded exercise.

The truth is much more complex: there are a great many scientists around the world who, contrary to what you will read in the British Press, do, in fact, believe that ME/CFS is a ‘physiological’ disorder, that it on the whole doesn’t respond to ‘purely’ psycho-social treatment, and that much more bio-medical research is needed.

Of course the dichotomy between these positions makes no sense in the first place – I have yet to work out what is meant by an illness that does not have any ‘physiology/biology’ attached to it.

The group that are loosely called the ‘Wessely School’, after Prof. Simon Wessely, claim constantly that the split between physiology and psychology makes no sense and that there needs to be an ‘end to Cartesian Dualism’.  I happen to agree to a great extent although I have not made the leap in to complete reductionism when it comes to the mind/brain problem which is a complex and ongoing debate involving arguments around exactly what mind might be, how it arises from ‘brain’, what ‘thoughts’ are and if there are such things as ‘epiphenomenon’..

The problem I have is that if the ‘Wessely School’ want psychiatry and neurology to be the same thing then they cannot also argue that ME is not a ‘physiological’ problem – it simply makes no sense. They can’t have it both ways.

Many people with a diagnosis of ME or CFS or ME/CFS did have a viral start to their illness that has simply not resolved – when this happens they fall into a nightmare situation where they are told that the problem is lack of activity and a belief that they are ill when they are not. They are then told that the only thing that might  help is CBT and graded exercise – some refuse, but a great many do try this approach and a great many of those find it of no help at all and some find it positively harmful both to their physical and ‘mental’ health.

Being constantly told that you are not to believe your own perceptions of your own body is, I can personally attest, quite head-fucking.

There have been two large medical trails in the UK looking in to psycho-social help for patients with ME; The FINE trial, the results of which were so bad that they have been largely buried and the PACE trail which showed very modest improvements in a small section of patients that were selected using the broadest criteria possible for ME/CFS patient selection. The PACE results were then spun out of all proportion via the Science Media Centre and the resulting headlines said things like ‘Got ME? Just exercise!’ (The Independent).

These two studies were allocated ALL of the Medical research Funds for ME/CFS in the UK and NO public money has been given for any bio-medical research.

Meanwhile bio-medical research has continued to be done; quite a lot has been discovered about the illness and proposed International Consensus Criteria have recently been published in the Journal of Internal Medicine supported by 25 clinicians and researchers from around the world:

Full text: http://niceguidelines.files.wordpress.com/2011/07/myalgic-encephalomyelitis-international-consensus-criteria.pdf

Journal: http://onlinelibrary.wiley.com/doi/10.1111/j.1365-796.2011.02428.x/abstract

The general perception of those with ME is NOT a concern that being called ‘mentally ill’ is stigmatising – it is that the mental health treatments they have been offered simply do not help and yet in the UK nothing else is even being looked at and clinics offering CBT and Graded exercise have been rolled out across the NHS, at great cost, with very little evidence for their efficacy and are the ONLY ‘treatment’ available to people.

The clinic I attend for CBT and Graded exercise has for instance told me:

‘try and picture a blue bubble around myself so it is easier to deal with stressful people’

‘try reading the book of Job to help with sleep’

‘ME is classified as a mental health problem’ this is untrue it is not anywhere classified in this way.

‘Do as much on a bad day as you do on a good – try to level out your activities’ – to me this simply stresses the complete lack of understanding there is for what it is to live with this illness for years on end.

I won’t go on – it makes me depressed thinking about it…..

I will just point out that Wessely is British liason psychiatrist who works in conjunction with government bodies that deal with benefits claims (he is cited on the DWP guidance for claims assessors) and with defence departments in the UK and the USA and also denies a ‘physiological’ explanation for gulf war illness, and also is quite happy to work for disability insurance companies that have been prosecuted for denying disability claims.

If Simon Wessely really cared about patients, as he claims, then he would not be shamelessy and constantly self-promoting in a way that damages their interests by giving the impression that  there are more than a handful of people who feel they have been so maligned that they have ‘lost it’. You would think as a psychiatrist he might, in fact, understand that constantly being told that you are not experiencing what you are experiencing might lead someone to such action.

Call Me Gregor Samsa

Where to start? It’s difficult when one is already in the middle of it all – so I will start with a piece I sent to the Guardian today in response to their request for people with chronic illness to tell them about it due to a report showing that 10% of suicides are related to chronic or terminal illness http://www.guardian.co.uk/society/2011/aug/23/suicide-chronic-illness-study

***

Living with chronic illness and pain everyday makes me, I admit, feel suicidal on a fairly regular basis. It is not so much the illness itself (in my case ME and spinal arthritis) but, instead the social attitude to illness that makes me consider taking my life.

Of course constant pain and feeling very unwell and unable to do much of any use takes its toll,and people, even those who are close, easily forget what the ill person cannot – that suffering is ongoing even when there is no outward sign.  But for now I can live with the physical pain and illness.

No – it is the fear caused by the relentless haranguing for being unable to work that will kill me in the end. That and the loneliness of it all.  

The government constantly reminds me, through its willing mouth piece, the media, that I am worthless. I can’t work and I claim benefits and am therefore to be mistrusted to the point where I am told that my very perceptions of my own body are not reliable and, that I will, at some point, have to, again, prove my inner physical truth to a  privately employed bureaucrat working for a flawed system in order to be allowed to continue to live.

Last week I called the Samaritans – the man was nice but he can’t change the fact that society as a whole has decided that chronic illness doesn’t really exist and that all those suffering it must be lying, workshy scum. We are all young and fit until we die now – didn’t you hear? Wasn’t it people like you who told us all that in the first place?

I live in a Kafka novel and my self esteem is being eroded just a little more everyday – soon there will be none left. 



Much to my astonishment the Guardian decided to use an edited version of this on their Comment is Free reader's panel: 

http://www.guardian.co.uk/commentisfree/2011/aug/26/chronic-illness-peoples-panel?commentpage=last#end-of-comments