Bowie

This post has been a while coming because the shock of hearing of Bowie’s death has taken time to sink in. He always seemed other-worldly and so it seemed he might be immortal. I suppose, in a way, his mark on popular culture has been so great that he (the artist) / his work will be immortal.

Since Monday morning, a lot has been said about how Bowie offered up something to, in particular, people who were teenagers in the early and mid 70s. Most teenagers feel that they are ‘other’, misunderstood, different. They look for a connection, a reassurance that somebody out there understands.

Ziggy was certainly ‘other’ in the early 70s. I don’t think that people who are now younger than, say, 50 can understand how extraordinary it was to see Bowie/Ziggy in 1972…and yet he seemed to offer a possibility that we might be able to follow. The make-up, costumes, theatricality seemed beyond what we knew in suburbia and the attitudes and imaginings in the lyrics spoke of things we’d never heard of or viewed with wonder or fear or derision – until Bowie offered them as another ‘way to be’ that was legitimate, possible, desirable.

Yes, there were other bands with all the ‘glitter’ but they were mainly like run-of-the-mill 'blokes' dolled up for a laugh or the money. Bowie meant it. There was Roxy too …but they were so otherworldly, esoteric, mannered as to be almost scary and inaccessible: Manzanera’s fly specs, Eno’s strange Dr Strangelove-meets-the alien look and Ferry with his louche sneer. Bowie, by comparison, grinned in a way that said ‘I’ve got you…come to bed…'don’t laugh babe, it’ll be all right’'…and that was just to the boys. You somehow felt that Bowie would show you a world of mystery and wonder and take you to places you’d never imagined but had always longed for and you’d be safe in his amazing hands.

’Oh no love, you're not alone
No matter what or who you've been
No matter when or where you've seen
All the knives seem to lacerate your brain
I've had my share, I'll help you with the pain
You're not alone..’

 David Bowie - Rock 'n' Roll Suicide

I was hooked. He’d shown me the way and made me realise that it was possible to escape suburbia and a grammar school education – even if it took me years to summon up the courage to make good that escape.  I could become a 'Kook' and be proud and unashamed.

Kooks

So what of my memories of Bowie ?

I think the first time I really heard him was when I stayed with my older (and quite glamorous) cousin who had already seen Bowie perform and been asked backstage to meet him. We were driving home in her Daimler at night and she put Hunky Dory into the tape player. There were the opening chords of ‘Changes’ as I floated along in the back seat: stars and inky sky speeding past down dark wooded lanes and those tinkling piano notes ending the song as we pulled on to the motorway. It was like a dream.

At school there was J who had her red hair dyed even more red and cut in an exact Ziggy 'do' and K and M who went to all the concerts and got to the front at The Rainbow and their friend Tommy who was devoted to Bowie and had a red sequin jacket which he wore to gigs. He was so scared his parents would find out about the jacket and the satin trousers he wore (and the eyeliner..and blush) that the jacket and schlapp had to be kept at a friend’s house in case his Mum or Dad found them.  The very idea of boys wearing make-up in the early 70s was outrageous, scary, and the idea of girls teetering along in their smock tops, platforms and ‘bippity boppity hats’ to see an androgynous seducer even more so.

There was the Romford Odeon gig and then later a long relationship which is marked out by Bowie tracks from Hunky Dory all the way through to Lodger with it various sartorial influences – haircuts, jewellery, cigarettes I’d smoke, books I’d read because Bowie had mentioned them…..and the romance of serenading each other with ‘The Prettiest Star’ and the fantasy of having children and our lives being like the words of ‘Kooks’. And now, as I listen to some of the songs of that period being endlessly played on the radio and TV I realise that so many of the lyrics became just part of my everyday vocabulary – and they still are: ‘..satin and tat’,’…tigers on Vaseline’ etc etc.

Later Scary Monsters saw me through a very difficult time. I was holed up in my room dissecting the lyrics for meaning and finding new meanings and new resonances at every turn.  The work that came out of it got me a place at art school.

Then there was the Milton Keynes Bowl gig in 83. I spent a week hand-painting a white boiler suit with images of electronic circuitry and made earrings from bits out of a broken transistor radio. In the event, it was a terribly hot day and the boiler suit, the amount of make-up and the very teased and scrunched hair wasn’t practical --- I was SO hot --- but it was a great day – apart from the two and a half hours it took to get out of the car park and arriving home at 5 in the morning before having to go to work for 8.30. It was such a huge venue that Bowie was a speck in the distance or a blur on a screen – of yellow blond bouncy hair and pale blue suit --- but he was there and so was I.

My hair was a passport to all sorts in those days: hair shows, bits of local modelling work and I remember having to slowly walk down a catwalk to the tune of ‘Goodbye Mr Lawrence’ as I touched other models who were inside black cloth ‘bags’ and emerged as the touch of my hand awakened them.

…and now he’s gone from this earth and left us here to cope....but he's left a huge legacy and a generation of people who are more aware, more open to possibilities

Other people of my age have said the same but Bowie really did point us in all sorts of directions and not just the superficial. I’m glad to know he was also generous, kind, polite and honest. Other heroes have proven to be less noble.

RIP DB


This piece by Kathryn Flett in The Telegraph tells a similar story. There must be millions of people in their late 50s, early 60s who feel like a piece of them his been ripped out

http://www.telegraph.co.uk/music/artists/why-those-who-were-teenagers-in-the-70s-will-feel-the-loss-of-da/

In the Middle of Nowhere

I was going to write a (probably long) piece about how things are at the moment. As I contemplated what I was going to write this came on the radio. 

As usual Dusty puts it much more succinctly than me. Its strange how often she 'appears' when I am floundering. I've loved her music for so long it's as if there's a strange link *

So...nearly 60, M.E., Fibro....so many situations where we are waiting, hanging, floundering and have no real influence upon the outcome and for me the M.E. means I have no job, no money, no real say or influence so I sort of float along fitting round everyone else because they all have proper lives and I have even less influence.

In the Middle of Nowhere.

* ...and no I'm not some deluded weirdo who thinks I really have a psychic link with an old 60s pop star...it's just odd the way she pops up at unexpected moments when I'm floundering. Maybe I should take a leaf out of her book and smash some plates, fling some flans :)

A blast from the past

A long long time since posting anything here. Life has been too busy and my health just doesn't seem to have picked up properly since a slump about a year ago. I have had to stop as much 'screen time' as possible and I am trying a new regime of homeopathic treatment which was recommended by a friend in the USA who I knew from College 40 years ago. She has benefited from this treatment massively and we share a similar medical history in that she also had Epstein Barr Syndrome when she was about 17.

However, in the never ending quest to find that special treatment that will 'fix me', one thing has recently knocked me for six. We are downsizing --- clearing out all sorts of stuff from way, way back. In the past few days I came across my mother's diaries. Some of the entries are indecipherable to me as they are written in shorthand but some are all too clear and what emerges is a record of someone who was probably living with fibromyalgia or M.E.

I have always had a suspicion that M.E. was the cause of my mother's constant ill health but now I have a sort of record in black and white. There are also entries which mention me being ill as far back as the 1970s. One entry from the early 80s, describes how ill I had felt for weeks and how I went to the GP and then felt fobbed off with blood tests which came back with 'normal' results. There are references to the pain I felt in my legs,in my arms, looking tired and thin, having difficulties with perfumes, food, eczema.

I knew all this of course but, whilst living a life with children and the career I once had, details get forgotten. I can't remember any of that last episode with the blood tests.

Reading those diary entries makes me wonder if there's any real hope. Do I have any realistic hope of ever, ever being well -- a state that I cannot remember, a state which is in many ways meaningless to me and not part of my reality. Reading those words makes me doubt the future because it makes me wonder if the story I have been telling myself and others for years --- that I was originally well but had glandular fever when I was 4 and then another bout of the same at 16/17 --- is true. Was I ever really well or is there something in my genetic make-up that means I was bound to become unwell and never have the same energy as other people, always destined to have the aches and pains of fibro, always destined to have more and more sensitivities to chemicals, food and so on and so on and so on ?  Is there any hope at all?

2014...will there be positive changes for people with M.E. ?

Another year begins and, like many others, I start it with good intentions and a collection of aspirations and dreams. In my case, any dreams I might have are hampered by chronic ill health and a lack of energy so that, rather than drawing up a 5 point plan (as I used to do when I was in better health) I haver about what should be a priority and what is realistic in my situation.  This is akin to having a split personality with one side of me encouraging big plans and really 'going for it' and the other side standing to one side,  wagging a disapproving finger and tutting at such foolish notions.

In the back of my mind are all the people I know who also have M.E.,CFS, Lyme and  other misunderstood and poorly diagnosed conditions which take a massive toll on energy and any internal resources to plan, move forward and achieve. In particular I think about those friends who are at the severe end of the spectrum of these kinds of illness and who spend their days simply surviving from one minute to the next; breathing slowly, counting the seconds, minutes, hours and wondering what the next day will bring.  I've been there too....in that unbearable dark place where you never quite know whether you will survive the day or really want to survive the next one.

Still, for me, that is the past and in more recent years I have been able to do more within the carefully managed pocket of energy in which I exist.  All the same I  wish I  could identify what made the difference; what brought me forward from severe to moderate.  I have no idea, really, how I got from being so ill in 2001 ....all day every day in the dark with no stimuli, nauseous, in pain, giddy, terrible headaches etc etc to where I am now.

Time ? Resting ?  Luck ? 

What I do know is that any improvement is terribly fragile and one can never take one's 'eye off the ball'.  It's so easy to be duped by apparently feeling well enough to do stuff and then, too late, realising the damage that's been done --- as I discovered about four years ago when I became over-confident and deluded and soon went sliding back down the 'snake'. It took me nearly two years to climb back up the ladder but, even so, every relapse seems to take its toll and you never quite regain all that you lost.
 

It's easy to be encouraged by people who care about us. They want us to be better because they care and so they encourage us to 'try'. Loving them back we want to please, to respond to their caring and easily fall into the trap of trying just that little bit harder than we should. The thing is, so many of us look reasonably healthy ('..but you look so well ....' !) and so I suppose outsiders can see no reason why we shouldn't/wouldn't accept their encouragement.. In my case, I also have an internal script that constantly doubts how ill I  really am and constantly questions how much I could do if I did try harder, wasn't so flaky, wasn't such a wimp. This comes from years and years of living without a diagnosis and being told my symptoms were psychosomatic and caused by anxiety, depression, or some personality flaw, weakness. It makes my whole situation very precarious..

Within my group of M.E. friends, there has been discussion about support groups and forums --- how supportive they really are and how an air of competitiveness can creep in about who is the most ill, who deserves the most sympathy.  Personally, I don't think there will ever be a really safe place to go until we have proper tests that verify our illness and the particular condition we have. I think we are all in slightly different health situations which have been collected together under the umbrella term of M.E./CFS and so there are bound to be doubts and discrepancies which lead to jostling about who deserves more help, more pity, more understanding and the medical establishment has created a situation which is divisive and unhelpful. Over-stretched NHS services for people with M.E. are based on the premise of CBT, GET and drugs being the best treatment for our conditions. When those treatments don't help, patients feel let down and misunderstood. They begin to try and help themselves and search for more effective treatments when they have no medical knowledge and no real understanding about physiology, how vitamins and minerals and the processes of the body work together,  accepting the 'expertise' of all manner of theorists and (at worse) charlatans.  The whole scenario is a mess.

So where does that leave us at the start of another year ?  Well, for me, I shall hold on to my hopes and aspirations but try to keep them within manageable bounds. I hope that 2014 will be kind to everyone but, in particular, I wish with all my heart that my friends who are 'down there with the snakes' can find a few rungs on a ladder and begin to haul themselves back up towards better health

Look ! I'm in a band

Many many moons ago, my dear chum Lee Lee Ingram and I were saying how much we missed being creative and how much this illness gets in the way.

Ever one to grasp the nettle (!) Lee Lee said 'Why don't you write some lyrics and I'll put a tune to them'......and from that has grown a project which has now culminated in the formation of our band Dropkick and therelease of our first track 'Trapdoor'.  It has been a real labour of love (and many giggles). The track has a sort of electro/disco/post punk/feel: a tale of twisted infatuation and naughty goings-on with a gimlet eye that looks back to disco whilst the other eye looks forward to party and passion.  Lee Lee did two great remixes of the track and then we launched a competition for remixers. From their entries we selected another 5 remixes and so we had 8 tracks for release --all very different.
 
We have been fortunate enough to enlist the support of a Dutch record label called Noisj who will produce CDs and manage the digital download release for us. The label owner's words were something like 'this is just to weird not to be heard' and 'I think there is a huge market out there for you'...so weird in fact that they decided to create a new label for our music- N.R.G.T.C.
The official release date for the CD and digital download is 28th November 2013, but it is available NOW on pre-order. By pre-ordering you will help Noisj to get an idea of how many CD's to manufacture. You can of course just pre order the digital download if you dont want a CD. Oh, also if you pre-order you will immediately get 2 tracks off the EP digitally. The EP will be available through itunes and Amazon etc after the 28th, but for pre-orders you need to go to this link - http://noisj.bandcamp.com/album/trapdoor
The fabulous Miss Mitsi B painted the cover art for us and she also features in the video which she produced for us
http://www.youtube.com/watch?v=fmHUUi1DwNw
 
To see more of Mitsi's great artwork go to her website here - http://www.mitsib.com

If you are on Facebook then please like our Dropkick Band page - https://www.facebook.com/morefordropkicks

Lastly, please share this around because as well as this being a really fun project, any monies we raise from the sale of the CD and downloads will go towards medical expenses for Lee Lee and another vintage Balenciaga Housecoat for moi

x

A toe in the water and a storm in head and heart

In the past few months I have been attempting to move on from all of last year’s Benefits misery: to try and reconnect with things I am good at and which give me some pleasure; to try and be out in the world more and at home or in the virtual world less.

I could foresee some of the problems this might unearth. There are others I could not have foreseen

I was asked if I’d like to help out on a sewing project for people with mental health issues at out local museum.  There were four sessions and I managed to get to two. The group was made up of arts workers, museum staff, volunteers, people with mental health issues and CPNs. I wasn’t sure where I fitted in at first but, after conversation and a relaxed approach, I found that I had a lot of experiences and knowledge in common with the arts and museum workers (we had worked in the same places at different times) and everyone was very friendly.

At first I found it heartening to be part of the world where I used to feel so comfortable: talking about art, making, museum collections, history, and ways to develop projects. I could feel the old Cusp re-emerging and coming to life.
However, over time I realised that old Cusp was just that…old, gone, in the past …and the more I listened to what people were doing, where they were going, had been, had planned, the more I was reminded of what I could do long ago and the more mindful I became of how little I can achieve now. I realised that, by choice or design, I had been living in a narrowly bracketed band of energy which felt like ‘living’ but was in fact existing on the margins of what other people call ‘real life’. 

The whole business has confused and unsettled me.

Overall the project was a success and a large part of me enjoyed contributing in some small way. The facilitator asked me if I would like to help at another group, an art group, at the seaside. It’s a 30 minute drive and something I rarely attempt alone. I was very hesitant about accepting her offer because I hate to let people down: if I say I’ve committed to a project I really commit to it…but I told her that I would attempt to be there and reiterated that, because of the bastard M.E., it might be difficult some weeks. 

Sure enough, I have missed the first two sessions. At the start of the project I would have been lucky to manage a drive to my local shops, two miles away, let alone a 45 mile round trip with a 2 hour art session as well. This week, despite feeling exhausted, I made myself go. I didn’t want to let down the Project Leader and I wanted to be part of that world again.

The group is small and lovely. The other volunteer is warm and friendly and, again, I find myself unsettled and exhausted by the whole process. All the time, there are echoes of how I used to be, what I used to do, what I could achieve. All the time there are echoes of what I cannot do now: echoes and tremors of how I have no real goal now but drift along, buffeted by ill health, family responsibilities and necessities.  What’s more, when I was working, I had two projects running in this seaside town for over 5 years. It was my regular ‘haunt’ and everywhere I go, I see the old me.

In addition to all these echoes, my Pensions Company have, somehow, got wind of the fact that I have done a small amount of volunteering and seem to see this as a glimmer of hope of me returning to work: wanting to know how often I attend, how long for, what I actually do there. They also got wind of an online art project I followed last year and want to know ‘ …what are my plans for a follow up and the work that was produced…’ as if I am going to launch myself at the art world with a major exhibition. The course was online, six sessions and for self-expression: my desperate attempt to find a way of expressing all the turmoil within that had been unearthed by the wretched ESA assessment.

Everywhere I turn it seems I am reminded of how much other people can do, how quickly, how organised they can be and how everything seems to take three times as long for me and drags on and on as I try to complete a task.

If I speak to people about my misgivings, (i.e. people in good health) they say ‘Don’t look back, look forward’….but to what ?  What am I looking at ?

Will I give up volunteering ? No. For all the difficulties and rumblings, I enjoy it too much and there is a glimpse of what it feels like to be useful and recognised as me rather than as a role in someone else’s life but I still have to find a way of resolving all these unsettled rumblings.

Was the ESA assessment that I was ‘fit for work’ correct ? No…not if these experiences are anything to go by. This is hard enough. The idea of being expected to turn up to a place of employment on a regular basis, at a specific time for a specific number of hours is ridiculous when applied to me.

I’m not sure I’m fit for anything

Going Nowhere

The wretched torment of Work Capability Assessments and ESA Tribunals and the fall out has finally reached a peak. I am more than miserable and hopeless.

Everything and everybody either makes me more miserable, more resentful or feel an even greater sense of loss of control.

Everywhere I turn I seem to be smacked in the face by the fact that I no longer really exist.

I am 'fit for work', so I must be well and therefore not eligible for any Benefits.
If I must be well then I must be able to work...but I'm not well enough to work (my doctor says so) so at least I can do some voluntary work. 
I apply for some voluntary work but so far nobody seems to want what I have to offer (and to be honest I don't have much faith in what I have to offer anyway --- transference ?).

I look at Adult Ed. classes. They are far beyond my means (since I no longer have any Benefits or money of my own) but might be affordable if I was claiming ESA or JSA or DLA.  I'm not eligible for any of those so I cannot afford to join a class.
In all honesty, there aren't any classes I want to join.
 
I am useful at home for looking after other people. There are always other people to look after at home....or other people's dogs. I can't have a dog of my own anymore because I can't afford to have a dog.

I am stuck

I am hopeless

I am lost

I am weary

Like many people I have had my share of difficulties and rough times. Usually I have been able to pick myself up, dust myself off and carry on...not 'letting the bastards grind me down'. This time I don't seem able to do that...or not for now.



Congratulations Ian Duncan-Smith and all your grand plans.

Congratulations Coalition government on all your media spin about Strivers and Skivers: an easy way to set one person against another, to make a very complex and difficult situation into a seemingly 'black and white' issue.
I used to be a Striver....then I was a Skiver...now I'm neither (heh !...a rhyme...maybe I'm a poet ??).

I can't skive and I can't strive...so what am I ?


....a little rudderless boat floating round and round and round in circles going nowhere with no name on the hull


(You might think the choice of song and singer is rather 'quaint'...      Lena Zavaroni !!!

Wasn't she that girl with Hughie Green who sang rather over dramatically when she was 9 years old ?

She was. She was also anorexic and she was the friend of a friend of mine who died from anorexia. Lena died too. She was neither one thing or another --- a child star who had grown up and grown up the 'wrong shape' (i.e. 'fat' ...which was NOT what you wanted at Stage School in the 70s) so she tried to control her food, her environment, her relationships so that she would 'fit' and find some role that felt right. It didn't work and she lost the battle.

So, despite the schmaltz and ickiness of the song and delivery...it's all rather apt because, although I'm not anorexic and I have no intention of doing away with myself, I do feel like I am going nowhere and this song and the singer have direct connections to my own life)

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

Scary Monsters Super Creeps

In another time, long long ago this song meant everything to me: not just because I was a Bowie fan, not because I adored the freakish costumes and (at that time) state of the art video effects, but because the words meant so much at a time that was difficult and very uncertain.

I never thought that over 30 years on, they would seem so apt again.

Those of you who know me from Facebook will probably know by now that I was found 'fit for work' at my ESA assessment. I wont bore you with the details if you dont already know them but, essentially, this means that I must go and find work (for I am not entitled to any benefits from the State) or make an appeal against the decision in which case I shall be given £30 less per week than I am now until the Appeal panel make their decision. If I win I shall recieve ESA in return for jumping through various hoops that supposedly will enable me ot return to work. In any case the ESA will only last for 12 months and then that's it...no more money, no more support....I'm out of my own, on the scrapheap: a 56 (by then) year old, who has been out of work for 11 years, who has a chronic health condition (according to the GP) yet is fit to work (according to the 'medically trained' assessor at ATOS).

Those are the raw practical facts of the situation. They say nothing about the raw emotional facts of the situation.

After 38 years of living with M.E., CFS,,,call it what you like (I'm sick of the debating and arguments)...I am used to being
disbelieved,
humiliated,
spurned,
blamed,
unheard,
doubted,
ridiculed.

In the past, being a quiet  and sensitive soul (yes that's how I really am ) my reaction, in my youth, was to back-off, retreat, roll over and give in. As I got older and bolder my reaction changed to

'F*** You. Watch this !'  

However, the latter attitude requires energy...emotional and physical and that it something I lacked and lack still.

In all honesty, the last few years before I had to end work were steeped in the latter response: I was so determined to do what I wanted and needed to do (within work/career) after so many years of being held back by ill health that I moved heaven and earth .........and all the expense of my health.

I've learnt now that nothing is worth doing at the expense of my health and that my health is fragile and easily damaged by anything too demanding. So where does that leave me now ? How to respond to this latest insult, scourge of scorn and ridicule (for that's how it feels) ?

I am at a loss.

There is a huge part of me that really really wants to turn round and say

'Right, if you think I'm fit to work then I'll go back to f***ing work and work as hard as I can just to spite you. I'll go back and do all the stuff I've been wanting to do for the past 11 years whilst you have been looking down you nose at me, playing games with my health, happier to bung me my Incapacit Benefit than really try to find out what it wrong with me and help me recover'

'I'll stick two fingers up to you now that your lack of real interest in me doesn't suit you anymore: now that you want to turn the tables and blame me for being ill, and brand me a scrounger and malingerer and either throw me out with nothing or make me join a 'Work Group' so I can make cup cakes and castles out of shoe boxes' 

The other part of me knows this wont work; that I need to stay calm and see what happens.

In the meantime I feel betrayed, exhausted, sacrficed, bewildered, very angry and inept because I am facing a faceless enemy who hides behind spin, statistics, lies and self-interest.  As ever, it seems, I'm up against all the things I hate the most: bullying, deceipt, oneupmanship, competition whilst pasty-faced corrupt, ego-centris politcians and financiers snigger behind in their ivory towers.

Scary monsters, super creeps

M. E . Awareness

 

To be honest, after so long and after so many posts written for M.E. Awareness Day I've run out of things to say. Life goes on and every now and then there seems to be another glimpse of hope on the horizon.

However, compared to many glimpses of the past, these little rays of hope do look promising but they need all the help they can get in terms of support and finance so I would direct you to The Whittemore Peterson Institute. This private research facility in Reno Nevada has  made real breakthroughs recently and you can make a donation by going here.

Alternatively, and if you would like to get something for your money as well as helping to fund research you can go here where you will find a range of greeting cards, prints etc which have been designed by people with M.E.  All the profits go to XMRV research at the WPI. The card project was created by LeeLee Ingram who is an artist and performer living with M.E.

Like Clockwork - a response

Thought it easier to respond to all those comments to my last post by writing another.

Firstly, thank you so much for all the support, advice and suggestions.

Looking back at the post yesterday I felt quite embarassed at writing such a whingey, depressing diatribe. I try to be upbeat and positive and maintain a kind of 'just get on with it' attitude. However, having mentioned this on Facebook I was reminded that actually it's OK to admit to being down once in a while and, actually, if the boot was on the other foot i.e if I was responding to such a post I'd say the same as all of you.  I'm just not good at giving myself permission to be negative --- in public anyway.

It was actually an outpouring based upon several days of feeling slightly unwell, with a bad back and everything, everything being so difficult and complicated --- not actually because of my health problems but more down to the fact of other aspects of my life here. Having a disabled child and a very old and disabled dog makes things much more difficult for anyone: even trying to find the right car. I bought a 'new' car just before Xmas and it has been distastrous: we can't get my son's mobility scooter in it as well as all the shopping; the boot is too high for the dog to jump into so I have to lift him in and out (hence the bad back), the seat is all wrong for me and the person who owned it before me saturated everything in Febreeze and despite all my attempts I cannot iradicate the chemical smell. We wanted to book a holiday but everywhere was wrong because of my particular needs or my son's ...too smelly, too hilly, no proper disabled access etc etc etc. It just seemed like nothing was easy earlier in the week.

I know too that my partner working from home will be O.K. We've been together a longgggggg time and adapated to no end of different situations. I felt even better once I'd made a start (if only a small one) on redecorating what will become the office. I just needed to take control, make plans.

I DO make plans, 'to do' lists and keep to them mainly but in the last post I was thinking of the sort of 'blue sky' lists I used to make...the big dreams...the progression of a career, creating new work, paintings, films, moving etc. That's what I miss. Everything now is so diluted and small and minor. Whenever I have tried to go for big things (which take a lot of time and effort) I have been thwarted and left undone. For years I have had to settle for everything being small and piecemeal, fractured instead of the constant moving forward and earlier this week it just really got to me.

I need to pull in my horns and accept my own pace and carve out my own space

Thank you all again for all the support. It's great to have such a wonderful sounding board

Clockworkkkkkkkkkkkkk.........................................................

It's a big year Chez Cusp...lots of anniversaries and big birthdays.  I don't really like big occasions...too much pressure and I believe the stress of that is leading to all the dreams I've been having: bizarre, twisted dreams. Dreams about the past, the future, what I've lost, what might happen in the future. Last week, decent sleep was especially precious as each night I closed my eyes and off I went into another technicolour drama-roller-coaster of old memories all mixed up....like some demon had decided to remind me of all the things I used to do but put it through a blender first.

I feel like there's a lot of reassessing going on under the surface. Landmarks have been reached and its time to move forward but I'm unsure about how or what. 

In the normal scheme of things I'd have drawn up a plan with bullet points and worked through it. I was always good at that:..'this is the plan' was a joke in our house because that was how I worked...dreams, goals  and plans. But nothing is normal Chez Cusp....especially inside Cusp where I'm never sure how I'll feel physically or, at the moment, emotionally. Its not that I'm sad. I just feel sort of pressured that time is marching on, I've been living with serious M.E. for ten years and not much has changed for me ...and I want it to.

Recently, a very good blogging chum was writing about loss of independence due to ill health and how that can affect self-confidence, relationships, self-image. J is a real fighter....gets knocked down and gets back up. I get knocked down, lie there stewing ad thinking and then get up again. I know that being ill enough to keep me at home for 10 years has knocked my confidence. I get little glimpses of the old me...the confident in-charge me, the gung-ho me...and instead of helping me to think 'oh that part's still there' it undermines me because I know its not sustainable: I can only keep it up for so long.

The threat of being assessed for my ability to return to work terrifies me. I just don't know how I would manage going to work. I know that most days I can put on the face...especially in interview/meetings type scenarios and probably come across as confident, personable and capable (unless its a day where I cant find the words and barely remember my own name) but I have lost so much. The skills I had are still there but the whole art scene and funding scene has changed. The people I networked with have moved on. The contacts are lost...and most of all I can only do all that for a short period of time. I'm like a old clockwork toy that runs out of 'wind up not long after you've set me down on the floor

At home things are in flux. We have had the threat of my partner's job ending for months. Now it seems like it might be OK except there'll be more working at home (because office space is scarce so they'll all be gievn a laptop and work at home). To be honest that feels like another piece of my independence lost: for all the company and help I get I need a few days alone in the house, to move about at my own pace ( i.e slowly, amblingly) to not have to worry about other people because, to be honest, even after all this time, I still don't really go at MY pace when other people are at home with me: I kind of try to keep up with the flow and then cover up my 'failings'. It's because I still feel embarassed, ashamed of the fact that I'm not the person I was and because I hate the feeling of lost independence; I need someone else to do a pick up of kids or drive to the supermarket but if I can do it myself (even if its too much) I will because I dont want to give in, be dependent, be frail. 

Some of this stuff comes from habit: I spent so long covering up my illness at work for so many years that it's kind of second nature. Some of it is much much deeper stuff from childhood..from being seen as weak and vulnerable and being determined that I wouldn't be perceived like that anymore. I remember an incident in A&E a few years back when I'd had a nasty fall and ripped out three fingernails. The nurse took one look at me and said 'We must get you  in a wheelchair. You look so pale and we dont want you falling over in here.'  She was saying it because she was concerned, caring.....and I was livid, furious at being 'put' in a wheelchair. I felt like it was a punishment for being so stupid as to fall over in the first place ....so everyone could look at me and point the finger in the waiting room 'Look at that goon..can't even buy 5 things in Tesco without falling over'

So many losses and such frustration. So much I want to do and so hard to do them. So sick of still being in thrall to that dark shadow and sick of being incapable of drawing up a plan and working through it: 'This is the plan'......what's the point ?

A long drive to nowhere.......

I got a real flashback/pang yesterday...first in a long time: waiting for my daughter to come out from after school club.

All the other parents waiting in their cars and a beautiful Spring evening. I'd had a very rough day...a lot of pain, digetsive problems, fatigue..spent an hour on bed in afternoon with TENS machine.

I looked at the other parents and thought...

'they're all normal (actually they may not be !)...they're all normal and have had normal days just getting on with stuff...been to work, been to the shops etc etc...I remember that and it's so long ago'

...and then immediately I got a flashback to when this really started in earnest: a day when I'd had a lieu day or afternoon off work and collected my daughter early from nursery .

I'd decided to take her to the seaside ..about 20 miles ...for an ice cream and a toddle by the sea. We got there, with me feeling jaded, and she didn't want to walk/toddle so I got the buggy from out of the car and pushed her a little way by the sea to her favourite spot where there's a rock garden.

I had to sit down ...winded, exhausted. I remember thinking,

'Oh God I've got to push her back to the car and drive home. I can't do it...I haven't got the energy....there's nothing there.'

Of course I had to...we had to get home.

She was about 18 months and I put on the jolly face as we licked our ice creams. I was terrified that my exhaustion and fear would show in my face. I somehow pushed her back to the car, changed her nappy, loaded the buugy and drove home...I knew something was really wrong. I collapsed washing up later....trying to act as if nothing was wrong, that it would all go away.

...and in the meantime I've been at home a lot, watching my career go down the pan, my life disintegrate, my daughter grow to a teenager, watching the other parents progress, get on with ordinary things that they take for granted....and I'm still in the same spot...watching every move, fearful, wondering if I can make it from my metaphorical seat in a rock garden to a car that could take me away from all this

Veteran

Lately I've noticed there's a growing trend amongst the M.E. Community: those who have had the illness for a long time are being called 'veterans'. It's a term I hate.
I know that in terms of dictionary definition 'veteran' means '....a person who has had long service or experience in a particular occupation or field' but in my mind I associate the word with people who have made a great contribution or been brave or done something marvellous...like soldiers in battle. They have something to celebrate.

As someone who was diagnosed 10 years ago and has probably had M.E. for 35 years I could be, have been, referred to as a veteran and yet I don't feel I have anything to celebrate; nor do I feel courageous, valiant or as if I have made any particular contribution in terms of M.E. It's just as it is...I'm me, I have M.E., I've had it a bloody long time and I've tried to make the best of what I have when I can...and everyone else's life, M.E. or not, is the same: we all have our ups and downs, all have our cards dealt and have to deal with that hand.

I'm beginning to think that there must be something in the air because there have been other bloggers posting about having the condition for a long time. Nasim has had M.E./Cocksackie since 1984 and wrote this piece last week. It rings more bells with me than anybody else's writing about long term M.E. because she speaks about the fact that how you feel , physically, becomes the 'default' -- it's just how it is and once you reach a certain stage or level of activity there's little else to do but just get on with things as best you can.

Rachel has also written an interesting piece today about her 4 year M.E. anniversary and the challenge that sets because she was told at diagnosis that most people with M.E. get better after 4 years or remain unwell. Of course, in the meantime, this supposition has been discredited but it still set a precedent that is difficult to ignore.

My (edited) response was this:
...Oh its all so familiar and you put it very well. I reckon I’ve probably had M.E. for 35 years now … and I have managed a life in the periods where ‘it’ was at a point where I could do stuff (with rests) and all the ducking and diving; got married, did a degree, developed a career, had children…all that whilst never really being well in the same sense as other people…just well enough, active enough to manage those things if I was careful, very careful.

I was diagnosed 10 years ago and really feel like I’ve tried everything that I feel is appropriate for me. There are those who would encourage me to still keep trying other stuff, other medication, other treatments but to be honest I’m sick of it all and none of it works very well so as long as I can get by I feel I have to be happy with my lot and grateful its not worse or like it was in relapse two years ago.

Maybe 4 or 5 years ago I remember going to my GP and saying that I seemed to have improved from initial diagnosis (that was an understatement…being bedridden, unable to see or hear or speak properly was hell) and yet I had reached a plateau and what could he suggest to push me forward…and the answer was ‘nothing’ and ‘I don't know’.

I was furious at the time but I guess he was just being honest. Sometimes things are just as they are and we have to try to accept and encourage those around us to accept too....'

and that's how I feel...that, despite all the razzmatazz about XMRV and anti-virals, despite all the hoo-hah about recognition of the illness, despite all the Cheneys, Teitelbaums, Protocols, Myhill, Lightning Process, Reverse Therapy, WPI...despite all that stuff I still have to go on living and I still have to get up in the morning, be grateful that I can (nowadays) , make sure the children are fed, warm, the dog walked and medicated (he's been very poorly), the house clean, the cupboards stocked, the clothes washed, the admin. done, the appointments made and kept....and....and....and.

But what would make a HUGE difference to me is if M.E. was recognised as a tough thing to live with whilst you are trying to live a life. Everyone talks about the symptoms but few people seem to talk about the 'living with'. My life would be easier if people recognised that difficulty and if I could live in a country where I/We were supported and assisted rather than sniped at and undermined by a Government that seems hell bent on making every vulnerable, or ill or disabled person's life increasingly difficult and precarious............

I don't want medals. I don't want a special title. I want recognition of the everyday difficulties of keeping my head above water and some recognition of the fact of how people with an unrecognised, unvalidated illness spend their lives ducking and diving, striving and trying and missing out on opportunities because they have to spend so much energy and time kind of 'going along with the lie' until they can't do it anymore and fall over into true chronic illness

I see changes afoot !

Every new year seems to accentuate the focus on the challenges of the year ahead and the changes that may come. Some can be foreseen. Some come as a surprise or shock.

This new year the Cusp household knows that there will be changes on the work front. My partner was told just before Xmas that, come the end of March ,there will be no more job: the charity will run out of money. Pity really, because if they could have just hung on until September the Association would have been 75 years old...75 years of helping and supporting blind and visually impaired people in our district and now, thanks to swingeing cuts and the new Coalition's climate of 'save every penny and to hell with the weak and vulnerable...' it will be no more.

It isn't all doom and gloom. Partner has many strings to bow and there are all sorts of possibilities. In a strange way it is kind of exciting...looking at all the possibilities and opportunities for reinvention.

Yesterday we had a visit from an old friend,R. Partner and R were at Art School together when punk was new, possibilities were boundless and fear of the future was an unknown. R is a gentle and thoughtful chap. Over the past few years he has had his share of troubles and come out the other side. A year ago he lost the job he had been doing for 20 years and has reinvented himself with a complete change of career.

I sat back and listened to these two old chums chatting about the old days and the new days to come; both saying how at this age (nearly 50) they were old enough to be able to draw on experience and maturity yet still young enough to take on new challenges, new careers.

I was sort of included in the conversation as if I was one of them. At one point I was even asked if I would like to join them in a plan to do artwork with older people....which is what I used to do before I HAD to give up work. It hadn't occurred to either of them that, whilst they were talking about losing a job through redundancy ---- with the possibility of retraining or creating a new opportunity, I had lost my job through ill health with no hope of retraining or new exciting possibilities. There was to be no retraining for me, no new challenges on the work front, no exciting reinvention... just the challenge of trying to get by from day to day, to keep breathing. It left me feeling that neither of them really understood how it must be to suddenly have no job and have no idea if you could ever return to work...not because you'd be unable to find another job or create a new opportunity but because just surviving, just breathing would be more than enough to cope with.

In any case I almost certainly already have other people wondering what sort of work I could return to : namely the DWP (Dept of Work & Pensions) who will surely some day send me a letter 'inviting' me to go for my ESA assessment to see if I am capable of returning to work. Based on the experience of other people with M.E. I am pretty sure they will find me capable and so I wait with bated breath and wonder what on earth I could do that would be even vaguely meaningful and productive and yet still leave me capable of functioning at home where I attempt to keep up with the daily grind of necessary duties so that this house and home moves along smoothly.

One idea I came across in a moment of whimsy and fear is to follow this opportunity trail which is currently appearing in local Job Centres. I could work from home, spin a few yarns and 'increase my wedge'. Do you think I'd have to wear a bejewelled scarf round my head and gaze into a crystal ball whilst on the phone. Makes you wonder about the psychic and esoteric industry !