MERRY CRIMBO

23rd November 2012 : a special day and a special anniversary

Today is the 23rd November.

For some reason, this date has featured more than most in my life.

23rd November was the day my Grandmother was buried

More recently 23rd November was the day my dear dog died last year

23rd November was the day I heard that my Benefits would stop because I had been found fit to work and would have to Appeal or find a way of earning a living.

Probably the most life-changing 23rd November was 40 years ago: it was the day that I caught a virus that would change my life completely

You can read the full story here

I was finally diagnosed with M.E. eleven years ago. Almost immediately I was awarded Incapacity Benefit. That financial safety net gave me some comfort and allowed me to put some of my worries aside so that I could concentrate on my diagnosis and how to deal with the news (one of the reasons I had tried and tried to stay at work was because I was afraid of what would happen to our family if my salary disappeared). If you know me or follow this blog, you'll know that my entitlement to Incapacity Benefit ended last November (23rd). My entitlement to any health/disability related Benefits ended in August. The process of being assessed has been cruel and very damaging. The damage is more to my soul and sense of self than financial.

Before diagnosis I had already lived with M.E for 30 years and been completely disbelieved or ridiculed. After diagnosis I felt somehow validated, justified...despite the huge mess we call  'treatment' for people with M.E. in the U.K. The more recent process of assessment means that the severity of my incapacity has been  disbelieved and questioned once more and I feel my integrity and honesty has been questioned. I cannot begin to describe how hollow that makes me feel.

So, on this special anniversary, what do I see when I look back forty years ? What has changed for people with M.E. ?

For people in the U.K., I would say 'very little' (and this is me being polite). When I first became ill in 1972, my parents (worried to death and wondering how I had changed so dramatically and quickly) were told

'It's just a virus of some sort. We don't know what it is. Just go away and wait for it to burn itself out.' 

It's still smouldering.  

As time went on and I had all the classic symptoms of fevers, sore throats, aching joints, sleep disturbance, inability to concentrate, digestive issues, cognitive issues and later (reactive)depression the last symptom became the ideal candidate on which to focus.

'Depression' is an easy 'get out' for doctors. There are pills. Supposedly, you take them, in the right quantities, and the depression goes away or eases ---- if you are depressed. Except I wasn't: or at any rate depression was my central malady. There are talking therapies. You talk, they listen and help you to understand your situation. I talked. They heard. They didn't listen. Because I wasn't saying whaty they wanted me to say and they weren't hearing want they wanted to hear.

Many people who are diagnosed with M.E. have had symptoms for a long long time (not usually as long as 30 years -- as in my case) but, still, they have suffered and been misdiagnosed for too long. The problem is that diagnosis of M.E. is, in the U.K., still a diagnosis by exclusion: meaning that the GP tests you for everything else that might be wrong with you and when all the tests come back 'normal' they shrug, try to think of an appropriate label, and usually choose Chronic Fatigue Syndrome (CFS).

CFS (if it exists at all) is not the same as M.E. Lots of people feel tired all the time for all sorts of reasons (emotional and physical). They may feel fatigued too (tired and fatigued are not the same) but not the sort of life-sucking fatigue that people with M.E. experience. M.E. is often not a term GPs like to use....and so the medical profession and many patients have sort of colluded in a compromise where the two conditions are conflated, mixed up, and we are told we have 'M.E./CFS'.  In the U.K. the NICE guidelines recommend a combination of CBT (cognitive behavioural therapy) and GET (graded exercise therapy) and this combination of 'treatments' has been created and promoted by what is known as the Wessley School: a group of psychiatrists centred around Simon Wessley who believes that people with M.E. can be helped by a talking therapy and exercise (which has been demonstrated by others to be damaging to people with M.E.)

The crux of the matter is that Wessley and his acolytes have the Government and the insurance industry in their thrall and influence. It suits the Government and the insurance industry to take this view of M.E. for no end of financial and political reasons. So, at least in the U.K., nothing much has changed for the person with M.E. in the past 40 years: there is still no test, no proper, funded bio-medical research, no proper understanding from the general public ('Oh I get ever so tired too, sometimes'), no proper understanding from GPs or training for them and no support for people with M.E. who are terribly ill, disabled and sometimes dying. Scandal after scandal has occurred and nobody seems to really care.

From a more personal perspective, my experience of living with M.E. for forty years has led me to become extremely distrustful of the medical profession. I am sceptical about their intent, their ego, their willingness to listen to alternative points of view, their willingness to really engage with a patient and their ability to look at the whole picture rather than treating each individual as a symptom or collection of symptoms, each contained in its own box. This opinion of the medical profession has been borne out by their treatment of other family members who have had similar experience to myself. Of course, not all doctors are the same and without modern medicine my son's life would be dramatically different and worse but the difficulty for people with M.E. comes about because of all the argument and flimflam around the nature of that condition and all the vested interests surrounding the debate. Once it was finally confirmed in 2006 that I had had M.E. since 1972, all the difficulties I had had, all the struggle, all the doubts about my own ability and strength were explained but I had been misdiagnosed for over 30 years by then and so, in pushing on,  I had done untold damage to my physical health in pushing through and due to the insulting and condescending treatment by doctors and other people in my life suffered all sorts of emotional damage too.

The last 11 years of my life have been wasted (from a purely personal point of view) . I have lost my career, friends, countless opportunities to work, travel, enjoy life. The saving grace is that I have children and they are a shining light in a dull and harnessed, tarnished life.

What of the next 40 years ? I doubt that I shall live that long. If I do I shall be very old and, in all honesty, I don't want to live to a great age.  I hope that there will be a dramatic turnaround in attitudes to M.E.: greater understanding and more proper medical research so that we can have definitive tests which lead to better treatment and less mistreatment of sufferers.  If this does happen in the next 15 years or so, there is the faintest possibility that I might have some useful and productive years ahead of me before I become old and more frail.

This all sounds very dour and negative. So what has the past 40 years, and especially the past 11 years taught me ? 

When I was first diagnosed and terribly ill, scared to death and hopeless, I had a brief telephone conversation with my homeopath: an elderly, caring and very worldly man. He said 'You will never get better if you don't learn to sit and watch the day'. I had no idea what he meant.

Because I had been disbelieved about being unwell for so long I had developed a way of being based upon trying --- harder and harder: trying to push against my feelings of illness and lack of energy, pushing against the feelings of 'I can't', pushing against the feelings and scoldings of  'you're just weak and lazy' towards an attitude of 'I'll show you'.  It took me years to let go of that way of being and relax. And then one day Reg's words made sense: I just had to try and stop trying and relax into what was around me, be in the moment. Reg has gone to a 'better place' now. He helped so many people with his homeopathy during his time here but helped me more with his sage advice. 

I suppose being ill and being disbelieved for so long has also given me a sense of sympathy and empathy with the underdog and the outsider. In truth, that is my way in any case, and one of the regrets and sadnesses I have to sit with every day is being unable to do as much as I used to do in order to help, assist and advocate for people who are vulnerable. Since being really ill, house or bedbound, I feel that I have still not found a way to be useful and it riles me every day.

What would make me feel better about all this ? What would help me to heal emotionally if not physically ? 

I suppose all I want is acknowledgement from the medical profession and from the DWP that I am and have been as unwell as I say I am: that I cannot keep up with people with a normal level of health and that I have tried my damnedest to make the best of what I have. I feel heard and listened to by the people who matter in my life: partner, friends etc. but unheard by the people who hold the power. I feel disenfranchised and disempowered: stuck in an endless loop of having to justify my actions, or lack of them, and justifying my existence. 

As a society we need to acknowledge that disabled and chronically ill people may be more than willing, even desperate to contribute to society ...by paid or voluntary work or others means...but access to that platform, those opportunities, has to be made easier. At the moment all we have is a series of endless barriers, platitudes and spin and a Government who uses all sorts of measures to create a 'Have and Have-Not society' where the Have-Nots (whether that is not having money or a job or good health) are blamed and shamed, pariahs to be looked down upon. Instead of having one society, one supportive community there has been the creation and perpetuation of two tribes pitted against each other whilst the those in power look on and assist the wealthy.


23rd November 2012 is an anniversary but there can be no celebration.

Letter of reply

Dear DWP and Tribunal Service,

Thank you for your letter which tells me that I was awarded 6 points after appealing against the original decision to award me 0 points in my claim for ESA.

I have decided not to appeal again because I know that the stress of doing so will likely kill me or, at best, worsen my health to a point where I may never regain any ability to walk, talk or breathe unaided.

My decision not to appeal again may lead you to believe that I know I don’t have a chronic illness: that for the past 11 years, whilst receiving Incapacity Benefit, I have been a whining, malingering scrounger. Nothing could be further from the truth.

I know I am ill. Even my hapless, hopeless GP knows I am ill (presumably that is why he has been writing me ‘sick notes’ since 2001 and continued to do so whilst I was appealing the WCA’s decision).  

No…I know I am ill and, if that man at the Tribunal was a real doctor, he knows I’m ill too but, then, this whole process isn’t really about finding out about who is too disabled or too unwell to work, is it ?   This process of ESA is really about money and stats. It’s about the dreaded ‘descriptors’: a term that has ‘Orwellian’ written all over it.

The ‘descriptors’ are about a series of ‘tasks’ which we can or cannot do,  judged by a ‘trained medical professional’ who can, apparently, see how I am just by looking at me, know answers to questions about how I feel physically, mentally and emotionally without asking me ..and then enter a tick in a box so that a computer will spew out a ‘decision’ about whether I am fit to work at a job which probably doesn’t exist.

So, please don’t take my decision not to appeal as an admission of guilt.

I know the truth and so do you. It’s just that, sometimes, the truth hurts and gets in the way of what you call justice.

Regards,

Cusp (age 56, ill with M.E. since 1972, diagnosed by the excellent NHS in 2001 and messed about ever since)

Living a Limp Along LIfe: M.E. Awareness Day 2012

After so many M.E. Awareness Days there seems nothing left to say, nothing to add…and yet when so little has really changed for people with M.E. it seems as if there’s everything left to say.

So…after living with M.E. for 40 years in November, where do I begin ?

What seems to have changed since 1972 when I first became unwell is that at that point my symptoms were seen as a curious virus that would pass and resolve itself given time. I wasn’t made to feel foolish or neurotic. I wasn’t blamed or made to feel guilty for being unwell and unable to return to school. My symptoms were not understood and my lack of energy, inability to concentrate and disastrous ‘A’ level results were seen as surprising.

As time went on, and my symptoms persisted and gradually changed I was seen as being someone who was imagining things: hypochondriac, anxious, making the most of an ‘opportunity’ to gain sympathy and attention. There was never any attempt to investigate any of the symptoms I presented and asked about. I was simply brushed aside and left to wonder what was the matter with me. I didn’t know what to do about any of it so I just kept trying to live a normal life: ducking and diving, covering my ‘inadequacies’ and ultimately my shame because after years of the insinuation that my apparent health problems were my own fault, I began to believe it.

Fast forward to eleven years ago when my relapse was so bad that I couldn’t get out of bed, couldn’t wash, see properly, hold a conversation, sleep or eat. I finally got a diagnosis…but no treatment except an anti-depressant: not because I was depressed my GP assured me, but because at a very low dose, the drug would help some of my symptoms.  There was no real understanding from my GP or work colleagues or friends. There was no real Internet support or groups apart from a few political groups which seemed cliquish and full of wrangling and unhappy one-upmanship. I felt very isolated but kind of expected that, in time, this huge relapse would resolve itself as the others had done: that at some point I would manage to return to a ‘limp along life’ where, by means of deception and guile I could fake wellness and achieve some of my goals. That has not happened. 

Since 2001 I have seen the internet change the whole landscape, in terms of peer-support, for PWME. The amount of sharing of knowledge, support and kindness is beyond anything I could have imagined in previous years. What has not really changed (at least for the better) is proper support and understanding from the medical profession or government. There is still no proper research into our condition where it is seen as a physical, neurological illness and there are still no official guidelines which encourage GPs and other ‘Specialists’ to see PWME as people who have integrity, knowledge of their condition and a desperate longing to be well. We are still prey to every charlatan, witch-doctor, chancer and egoist within and outside the allopathic medical profession.

The current economic and political climate makes everything more difficult for anyone who is unwell or disabled --- not just PWME --- and I see more and more people struggling to access appropriate levels of care. In the meantime, there is a huge push from government to find as many disabled and sick people fit for work as possible. The assessments by ATOS are a joke at best and a humiliating and cruel abuse at worst.

What those in government and medicine really do not seem to understand is that PWME are longing to be well, longing to return to a normal life, to work, bring up their children, go back to education, travel, create etc. etc. and that, in many, many cases they still do all those things whenever and however they can because they are so strong and brave and resilient.

However, with the lack of medical assistance and the pressure to return to work and keep up with people who are well, PWME are getting more ill and relapsing, living in debt and poverty…and not just financial poverty but a kind of poverty of the soul because of the lack of compassion and the constant need to fight their corner.

What would really help PWME ?

• Proper medical research and the use of appropriate drugs and therapy
• An understanding by healthy people that we long to DO things and EXPERIENCE a life beyond pacing and eking out a sparse existence and that, when we do have better days, we should not be made to feel guilty or hide our achievements for fear of someone pointing the finger and branding us as malingering and workshy.
• An opportunity (if we are able) to make some return to meaningful work but within very careful boundaries where the precarious nature of our health is acknowledged, understood and respected so that we can contribute to society, pay our own way, have self-respect and find some enjoyment: having to live a life where we have to constantly justify our existence, complete forms, attend assessments, fight political battles, raise funds, raise awareness becomes a job in itself and leaves little energy for more enjoyable, fulfilling pursuits.

I feel that this will probably be the last time I post anything for M.E. Awareness Day. After living with M.E. for 40 years and having written this post I have nothing left to say. I just live in the hope that before I am too old, some research might lead to a drug or therapy that will really help ‘us’ and I might still have the opportunity to achieve my goals and ambitions.

Spider and the Fly

Sometimes I feel as if I am living inside a web; a spider's web with me as the hunted and trapped fly.

This morning I had a phone call from the JobCentre to talk to me about my ESA appeal. The person I spoke to was pleasant, helpful, charming.  He was trying to do his best whilst employed within a system which isn't working and is not 'person-centred' but 'finance-centred'. It doesn't matter that he seemed to genuinely care about what I told him about my condition and my ability, or inability, to work: he was obliged to spout the mantra about how the old system was based around what you couldn't do and the new system is about what you can do: blah blah blah.

I can do quite a lot of things. Even the brain fog and cognitive difficulties associated with M.E. don't mean I'm stupid. The point is, as I keep on saying, is that whatever I can do, I cannot do it for very long and I have to have frequent rests: otherwise I come to a complete standstill and relapse; become bed bound. This way of being isn't conducive to finding or keeping most jobs.

During the conversation, the JobCentre employee went through all the documents I (or DIAL) had sent in support of my appeal. It turns out that DIAL have forgotten to said all the supporting evidence that I worked so hard to get together before Christmas. It's all still in DIAL's filing cabinet.  I was also told, again, that probably the most important document the DWP could receive would be the letter from my GP supporting the reasons for my appeal. There is no such letter. The only document from my GP is a hastily completed, scrappy questionnaire where he has deigned to write five word answers and for which he charged me over £40. So I am trapped between an unsupportive GP, a benefits advice support service which is telling me one thing and doing another and a government body which doesn't see me as a person but as a target figure.

Everybody seems to be having a say in how I am, what I should do, how I should act and what's best for me....except me....and I feel powerless to change it because everybody else is in charge. Ultimately, of course, I am in charge of myself but my health, the 'bastard illness', always has the upper hand and yanks on the lines of sticky thread in the web, preventing me from actioning the feelings of frustration, anger, 'I'll show you' and making me feel miserable as well as ill.

What would it take for someone to listen to what I am saying ? This has been my experience almost my whole adult life. First it took nearly 30 years for someone to listen and believe I was physically ill instead of depressed or anxious or lazy. Now I have a doctor who believes I am ill (even though he will not agree with me on the exact diagnosis) but I have another group who believes I am still well enough to work at least 16 hours a week.

I know that this whole situation is bringing all sorts of old feelings to the surface. I don't know what to do with them. I have tried everything I know, over the past 40 years, to resolve these difficulties with my health and to be 'normal'. At this age, I know that the way I feel physically is just the way I am. I am not able-bodied. 

I am very strong mentally and emotionally so I have to deal with physical weakness and try to make a life for myself but I also feel like I am being made to look a fool when I know I am not a fool. 

I feel like a fly in a very sticky web and I know there are many more people out there like me. If only we could really rise up and make our tormentors see sense.

Dory Previn

So sad to see that Dory Previn died yesterday. Her work and lyrics were/are such an integral part of my life and inner vocabulary. I'm not sure that she was ever really appreciated as much as she should have been as a performer and her lyrics, with their dark humour and cynicism, were too much for popular radio.  So pleased she finally seemed to find peace with her new partner who was with her from the 1980s until her death.

Now she's 'on her way home'.

Seems like watching your heroes die is part of growing older