Little signs of hope in a pinched existence

Daffodils courtesy of http://www.freefoto.com

Today my Mum would have been 85. She died five years ago. I wish she was still here to talk to. I miss her and I especially miss her when going through a rough patch such as the one which seems reluctant to let go of me since the New Year.

I'm still here and struggling to get everything done that has to be done and, in the present situation, that means there's little left for 'niceties' like writing the blog and following other blogs. I know this is wrong. I know that I should make time for the little things that cheer in order to take the strain off the rest of the load but it just don't seem possible: I'm either doing what has to be done or in bed.

I hate this pinched existence and I'm trying desperately to make up lost ground. I miss you all and miss the interactivity and random relationships of blog-world but even the computer seems against me --- all sorts of problems and then wretched Blogger/Google decided to lock me out earlier in the week by refusing to accept the password I have had and has been accepted for over a year so that I couldn't even leave comments on others blogs.

Today the sun is shining and the daffodils are coming up --- little signs of hope.

Great Dusty Song

I've been listening to quite a lot of Dusty the last few days and rediscovered a great story song she did in the 70s. It's not well known at all but it conjures up all sorts of images and plots for me.To me it's very filmic.

No videos on YouTube but you can hear it on Last FM.


here

Only but not alone

It's all anniversaries at the moment. Five years ago today my mother died. All those months of hospital appointments, hospice visits, arrangements for carers, nurses...all the conversations on the phone. All the times I cursed my own ill health for obstructing me from visiting, supporting as much as I wanted and needed to...and the suddenly it was all over. She had gone. I'd done my best and now it was time to tidy up. put things in order, say goodbye and move forward.

I'm not sad today...just recognising a passing. My mother spent much of her life in ill health but she always got back up and moved forward. She was gentle and kind. I give thanks that I was blessed with such loving parents. Being an only child makes you closer still and my mother was an 'only' too. Now she's gone there is no Cusp family from before...only the one here now --- me, my partner and our two children. I see my mother in my daughter...her eyes, her shyness, her sense of humour, her creativity and I know that, whatever the truth about life, death, God that we all live on in our children and our children's children.

Dusty Springfield 16.4.39 - 2.3.99

Ten years since Dusty died: my favourite singer and, close to my heart for all sorts of reasons, her songs are part of the soundtrack to my life.

Dusty was a pioneer of white soul, a brilliant interpreter of songs by Bacharach, Randy Newman, Jacques Brel and many of the other best song writers of that era -- Mann & Weil, Goffin & King. She could sing ballads, country, soul, folk and pop and suffuse any song with real emotion and her own individual ‘take’: she always gave her all.

Dusty was often seen as just another 60s girl singer in the line with Lulu, Sandie and Cilla but she fought hard for the integrity of her work and, although she was given no credit at the time, she in fact produced and co-produced many of her songs. She strived to reproduce an authentic soul sound in studios peopled by old fashioned musicians more used to backing Cliff or Adam Faith. Her feistiness and perfectionism often led to accusations of tyrannical behaviour but she knew what worked, wanted the best and wouldn’t be satisfied until she got it.

Dusty lauded and promoted Motown in the UK. After the disastrous Motown UK ‘Ghost Tour’ (so called because hardly anyone came to the concerts) she fought hard to ensure that authentic performances of Motown music were heard by more people in the UK and that Motown artists were properly recognised. Most people in the UK only knew that music through the tepid interpretations of home grown groups like The Beatles and The Stones. With Dusty’s backing and persuasion the Ready Steady Go Motown Special was brought to ITV. Almost certainly, without her backing it would probably never have happened but thanks to her the wonderful joyful sound of acts like Martha and the Vandellas, The Supremes, Four Tops etc became more widely heard and appreciated.

Partly on the back of making her 1969 classic album ‘Dusty in Memphis’, where she worked with the same musicians and producers as Aretha, Dusty moved to the US and more or less stayed there until the mid 80s. Life in the US was tough and she had a hard time emotionally, spiritually and financially. Lack of self confidence and never being able to accept that what she created was good enough led to all sorts of difficulties but gradually she pulled through. In the 80s she found renewed success with the Pet Shop Boys and moved home to the UK.

Finally in the 90s her real talent and achievements were recognised but she became ill with breast cancer and finally succumbed to the disease in 1999. She died on the day she had been due to go to Buckingham Palace to receive her OBE. Officials of St James’s Palace gave permission for the medal to be collected by Springfield's manager, Vicki Wickham, who presented it to Dusty in hospital.

Her death really affected me: not because I am an obsessive fan but because I had followed her from childhood and so many of her songs are connected to key moments in my life. She was creative, talented, rebellious, principled, funny and generous. I never met her. She died ten days after my father. I miss them both.

Here’s a lovely clip from the RSG Motown Special of Dusty singing with Martha and the Vandellas who were already close friends

Some links to other tributes:

Pop Junkie

The Wild Reed

The Music's Over

Dusty Springfield Network

Liza Minelli and Pet Shop Boys: Losing My Mind

Glad to see the PSB doing so well at The Brits. I love their witty and rather sour lyrics from the 80s. This is a cover of Stephen Sondheim song. Not always sure about Liza but her 'on the edge' nutiness seesm just right for this song and interpretation

Blossom Dearie - Quiet Nights

Judicicial Review of NICE guidelines for M.E.

Not well at the moment and it seems that all progress has gone in reverse.

Maybe this will change things ...though I doubt it: too many vested interests and political shenanigans around M.E. to give me much hope.

Short and Fraser are brave men to try and have the NICE guidelines for M.E. overturned.

All power to those souls who can get to London to support them.

Tony Hart R.I.P.

For those of us born in the 50s and 60s 'Vision On' was an essential part of teatime telly. I loved 'Vision On' because it was about art, creativity and it seemed very inclusive with warm and gentle presenters who weren't 'gung ho' or trendy but still encouraging. I loved the fact that the programme was signed for deaf children and the feeling that everybody was joining in. Although I loved art I was never brave enough to enter a picture for the hallowed 'Gallery' but I tried out the ideas and had all the annuals.

The mainstay of the programme was Tony Hart -- a quiet and seemingly modest uncle figure. He died yesterday and there are many tributes to him all over the Web. Recently I read an article about him in The Observer which mentioned that he had had two strokes over recent years which affected his ability to use his hands and to draw. On a day when I was regretting my own loss of past abilities, that thought brings me up short and makes me realise how lucky I am to have what I do have. His beloved wife had also died a few years ago and left him lonely and lost so I imagine that, from his point of view, his passing is a relief.

He has left a great legacy in terms of art, creativity and broadcasting. When I compare the programmes he appeared on with supposedly similar programmes for children now I know that something has been lost in the desperate desire to make children's' programming hip, cool and strident. The nearest equivalent we nearly had to Tony was Mark Speight who used to appear on 'SMART'. He too sadly died a few years back.

Children's' programme makers would be wise to look at these two sites (here and here) and reconsider how best to entertain and educate children in the future.

Thanks Tony.

Dreadful songs No. 6: Aneka - Japanese boy 1981

Right gang, enough with the old moans and groans: time for something REALLY grim to moan about.

This is one of the most vile, bizarre 80s concoctions I can think of: a scottish woman dressed up like a cross between a tupperware-party-touting housewife and a geisha singing a song about a Japanese Boy in a nasal, vaguely Celtic accent whilst encapsulating almost every cliche about Japan you can think of....eventhe melody seems to have been written on all the blacknotes by a ten year old on one of those Bontempi organs for kiddies.

Can you tell I don't like it ?

You couldn't even dance to it as evidenced by all the nice neat couples SITTING DOWN as she warbles on.

Can't remember if she did another song after this travesty. Maybe she had a string of hits: Japanese Boy, Australasian Boy, Tyrolian Boy, French Boy, Dirty Boy, Naughty Boy...same song wit tweaked arrangement and she changed her costume and put in the odd national cliche on the backing track --- didgereedoo, alpine horn, accordian, damp flannel, sharp slap on the wrist.

Do you think she bought that indoor areial on her head from Argos ?

Snakes & Ladders

Well, long time no see/hear/write and I feel like I have been neglecting this blog and you, dear reader.

It’s been nothing personal --- nothing you’ve done. I’m still very fond of you but circumstances have been against me for a while and I have had to concentrate upon those things which have to be done rather than those things which I’d like to do: like attend to my blog.

Before Christmas, partner was first told that hours would be reduced because of financial shortfall at employers :

Cue Famille Cusp shivering in dark corner wondering where the next scheckel will come from.

Shortly afterwards a number of employees cleared off saying they could not survive on reduced hours and had found alternative employ and then others were very poorly with the Christmas lurgy:

Cue partner not having reduced hours but increased hours and trying to fill in for the people who were no longer at work or able to get to work.

Cue Cusp trying to do all usual Cuspish chores-domestique plus many of the other things partner usually does.

Cue Tired Cusp and Failing Cusp and then Christmas.

Christmas passed by in an interesting manner. Baby Jesus hath smiled upon the Cusp Household in that we did not fall low in the face of the dreadful flu bug which seemed to beset all and sundry around and about us but son of Cusp did succumb to funny virus and infection in eye . The latter was very worrying since he is already visually impaired and has glaucoma.

Cue many trips to hospital and checks and drops and unguents.

All better now --- well nearly ----but it made for a quiet-ish Christmas with many trips up and down stairs with trays of food, providing company, watching videos, DVDs, PS2 games and many trips to hospital and calls to NHS Direct; not being sure if an array of symptoms were due to eye drops’ side effects or funny virus or both.

Cue Cusp and partner v.tired after Christmas

….and..breath….ahhhhhhhhhhhhhhhhhhhhhhhhhhhh ;0)

So that’s what I done in my holidays, innit, and now it is taking many a day to try and pull everything together again and feel like I have some control over the domestics and myself for I have not able to rely on my body (not that I EVER feel I can rely on it) for weeks.

When things are poodling along in their usual family-life kind of way it is relatively (and I say RELATIVELY) easy to try and fit my energy management regime around circumstances and stay on an evenish keel. I can more or less tell what I can manage and what I cannot. I can more or less tell how far I can push my limits without disaster. God knows I have had enough practice in managing what’s left of my energy. But when I am beset by unusual, unpredictable circumstances the whole thing goes to pot. I cannot rest when I need to. There are things that have to be done, people that have to be cared for, animals that have to be fed, cleaned out, walked. It’s no good taking on all the sensible advice about ignoring housework and only doing what you have to do because what has to be done in this house when unusual circumstances arise is more than I can really cope with but they have to be done.

And now there is beginning to be some semblance of the day-to-day routine that passes for normality Chez Cusp…and I am at sea: unable to get used to being alone again, occasionally liking the solitude and the next moment hating it, feeling as if I should be doing something productive but not knowing what and having a horrible feeling that life is passing me by, has passed me by.

….and breath…………………

Life is complicated and I am at that point (as is oft the case with PWME or any other chronic illness) where I could shake a fist at the sky and tell the whole damned thing to clear off, leave me alone, I’ve done my time, I’ve made my amends, done all the right things, listened to the advice, listened to the doctor, the healer, the insurance company and none of it has done any good. All that works is time passing and being careful and cautious and biding my time. I feel like I’m in some religious order locked away from the world. Maybe I should buy a habit ?

Rachel (The Creative One) sums up the dilemma very well:

‘Motivation is not an issue with this illness. Desire to do more, be more, is never a problem’

You progress, you want more, you do more, you wait, you wonder, you fall or carry on ….you’ve done more, you progress….but there’s always that hesitancy, that fear, that feeling of being unreliable to your self and to others so that you don’t feel able to jump back into the game.

As one of her commenters (Nina) puts it:

‘………you can’t be successful there unless you can continuously produce! I, too have gotten (what to me seems) much better, but when I’m in the real world, I realize it’s a relatively tiny improvement…’

And there’s the dilemma again for you can do all the right things but it’s never enough. The rest of the world moves too fast and unless you live on an island worldly matters impinge on your progress and you depend on the love and care of others to survive ---as we all do.

This ME life is one of snakes and ladders

Merry Christmas

New Sock Monkey litter

Been very busy making this latest litter of sockee monkey for a Xmas Bazaar. There are four monkeys and one sock 'critter'. Actually he started off as a monkey too but his legs turned out too short and he looked very peculiar so he had to be re-worked and turned into something else. That's strictly 'hush-hush', so please don't tell anyone

*******************

This one has an embroidered mouth and a starry body

Here's the critter. I think he's probably called Ronnie (don't know why but I thought I heard him whisper his name to me ).. He's quite funky....got a little goatee and a fringed tongue

This one's very surprised. Think I might have accidentally jabbed him with a needle in a sensitive spot

Aaaaargh ! This one's my favourite really. I've been saving this sock for ages. He's a sort of nice pale green with an embroidered mouth, a felted heart and a curious expression

Aha. A punky rebellious monkey. The black stripes are shiny and have little tufty bits and the pink mouth is sort of tasselled

Rant Over !!!! On with the Motley. Dreadful Songs No. 5: Lena Zavaroni Sings 'Swinging on a Star'

Well I got that lot off my chest yesterday didn't I ?.... and now it's back to 'normal' so I thought I should give you all a treat....of sorts.

Now, strictly speaking dear reader, I don't think this is, per se, a dreadful song. I adore the 60s version by Big Dee Irwin and Little Eva BUT ...and it is a big BUT..this version by Lena Zavaroni is the absolute pits...and it also epitomises everything I detest about child perfomers. Poor little devils. They may love to sing but I always wish that for their own sake and ours they would keep their love of singing to the family fireside and taunt their grannies and aunts rather than us, the public. I particularly detest children who sing like Big Mama Thornton or George Melly.

This clip that I found is doubly nauseous since it will also remind the more 'mature' U.K. reader of a nightmare in their televisual childhood: 'Junior Showtime'.

I had forgotten quite how queasy that show was but I DO rememeber that even at a tender age, if I even caught a glimpse I was ready to heave.

Poor Lena. I may joke but that 'Big Time' in Showbiz, helped by Uncle Hughie did for her. Wrenched from a small Scottish village and a home near or above a chippie, she was thrust into the limelight, staying with a chaperone/manager Up the Smoke, packed off to Stage School with all the other shreakers and perished by the mighty sword that is anorexia. A horrible way to go and a waste. I genuinely feel for the poor little soul. She was so lost.....

Despair and anger

Sometimes I despair of humankind and how we deal with each other and look out for each other. It's always been the same. I've always felt like this --- even as a child. Now I'm a 'grown up' my despair has broadened when I see how we attempt to care for each other through the various services that we have set up as a society --- the NHS, Social Services, Education, Mental Health, Crime and Policing. I despair, not because I think the people 'on the ground' --- who do the actual face-to-face work, are inept but because all the well meaning procedures, paperwork and planning gets in the way of proper, responsive, person-to-person caring.

In the last few days there have been incredible, painful, stories about the attempts of local and national services to provide care for vulnerable children. They have been found severely lacking (an understatement). If common sense had been allowed to prevail a child might be alive today and being cared for by people who are capable of such love and nurturing

In the last few days I have met a friend who's mother has terminal cancer. My friend is beside herself because she is bringing up two children alone and lives 40 miles from her mother. She has tried and tried to access services to support her mother as she dies and found no help at all -- not from Social Services, not from the GP, not from Macmillan. No one seems interested in offering this dying woman the support she needs just in terms of personal care and help with the domestic routine. Apparently her mother doesn't fit into the right boxes. She slips between the 'safety net' of Services. Last week my friend and her brother were so desperate that they resorted to taking their mother to Casualty and begging for help. None was forthcoming.

When my own father was declining into that troubled ocean called Alzheimer's he only got some of the help he needed because I had worked within such Services and knew where to go, who to ask. He only got other help because my partner works in a similar area of work and knows how to use the system. When my mother was dying of cancer she only got what she needed because my partner and I worked tirelessly and doggedly to get her the help she needed. We begged and harassed and became a bloody nuisance until people responded. It shouldn't have to be like that.

In the last few days, the parent of a child in one of my children's class has been convicted. That child's family live on the 'wrong side of town'. They are a loving family but vulnerable -- very vulnerable. They were always vulnerable ---- even before this latest event. They are not bad people. They are troubled, unwell, uneducated, lost. The parent who is now left alone is incapable of managing alone for a whole variety of reasons. The Court made it clear that imprisonment would make things worse for the family but they convicted anyway and now they have moved that convicted parent to an Institution 60 miles away to a place where access via public transport is very difficult. There appears to be no support from Social Services and none from the mental health team. If appropriate support had been put in place before the 'incident' occurred that parent may never have reached a point where they would be involved in a criminal action. The family and the extended family is in disarray. They are falling apart and everyone knows about the whole sorry business because it was reported in detail with addresses and names in the local paper.

In the last few days our elderly neighbour fell and broke his pelvis. He had been having terrible pains in his spine and other joints but our doctor (for we share the same GP) had decided these were just to do with 'old age' and declined to do any tests. It now turns out our neighbour has osteoporosis which explains his pain prior to the fall and also explains, in part, why the break was so severe. Our GP could have investigated the neighbour's pain more conscientiously. He could have prescribed medication to prevent further deterioration (this has been going on for 3 years) but he declined to do so. There wasn't time and it's easier to put everything down to old age. If the GP had known about the osteoporosis he could have put in various aids about the house so my neighbour was less prone to falling...but he didn't. Now the neighbour's in hospital and the nursing staff are regularly forgetting to give him/help him with his hearing aid and so have resorted to shouting at him or getting cross when he doesn't seem to respond to their questions or requests. They've been telling him he'll have to wait when he needs the lavatory. They are overworked and understaffed. So far he has had two 'accidents' and is ashamed and embarrassed. It's nothing new. When I worked in a hospital for people with learning disabilities over 25 years ago it was well known that a certain member of staff would deliberately leave one old lady in her wheelchair right near the entrance to the lavatory but pretend to not hear her cries for help in getting to the loo.....so she would wet herself and he could come over and shout at her. He could have the power and enjoy her humiliation. Everyone knew. We just needed him to be caught....and he was......just desserts. But where does that kind of cruelty come from ?

I have no answers for all this. I only feel despair and anger: despair and anger at individuals within these Services who seem either to work without compassion and should never have been employed or are made to work to strict guidelines and procedures which don't allow for or recognize common sense and gut feeling.

Procedures, procedures....always the paperwork, the forms, the meetings and the middle management --- never the common sense. There are people at the 'coalface' who see the families, see the children, see the old people and their despair and pain and needs and KNOW how to respond because the relationship is based upon one human being to another without the wall of bureaucracy and the constant reflection back to budgets, timescales, productivity, certificates and more bits of bloody paper. Most people in the 'caring professions' are there because, by nature, they care. They are blessed with an innate ability to respond to others' needs and know what they have to do. If their voice was heard and they were allowed to act upon their common sense, I am convinced that lives would be happier, that lives could even be saved.

Autumn Walk

Dreadful Songs No. 4: All Kinds of Everything, Dana. Eurovision 1970 Ireland

Well....continuing a certain theme, here's another wimpy Irish warbler.

Now don't get me wrong. There are plenty of Irish people and aspects of Irish culture that I like BUT I cannot stand simpering, mawkish niceness from any race or culture and this has simpering mawkish sentimentality by the bucketful.

When this delightful ditty surfaced I was but a strippling...and even then I could have vomited on the spot every time I heard it or saw Dana's nicey, nicey smile and that viciously 'nice' hair slide. Don't you just long for her to break out into a sort of Heavy Metal version and tear off that dreadful frock to reveal ripped jeans and a lack T shirt with a Death's Head on it ? For God's sake woman, chill out !

What's amazing is that beneath the sugary exterior there must have been more mettle than first appeared because in later life she ran for President of Ireland [mind you there have been far greater dolts who've stood for Presidency in 'other countries' and won...even if their time is drawing to a close ;0) } Later she was an MEP.

Anyway I nominate this beautiful song as Dreadful Song No.4 and invite you to partake of a strong anti-emetic before listening or, if you are in a frail state at the moment, do feel free to postpone this life changing experience until you are feeling a little stronger.

Sláinte !

What I did on my holidays

Well the half term hols are over and I'm sitting here trying to re-group my thoughts and faculties

It was a good week

We went en famille for a brief sojourn by the seaside. I rather overstretched myself and had a little 'dip' midweek but it was good to be somewhere else, involved in everything and pretend, for just a little while, that I was like other parents.
The weather was bright, sparkling and bitter cold but that didn't matter because we were having new experiences

Later in the week it was Halloween of course and the children and their friends spent the whole day making a revolting feely box as part of their trick or treat. We dressed up and 'hit the village', gleaning a ton of sweeties.

I made a lovely topical dessert --- Bloody Eye Pie.

Here's the recipe should you wish to replicate:

Take 8 digestive biscuits and crush with all the force that a PWME, mid half term holiday can muster (you may need help)

Combine crushed biccies with a large tablespoon of butter and as much brown sugar as children will tolerate in a pan over a low flame, until the butter has melted and combined with bics and sugar

Press the mixture into a shallow bowl and leave to cool. Meanwhile, search out your eyeballs. At this point in the school break you may feel they have already been burned out but persevere dear reader and attempt to wend your way to the local sweetie shop where you might purchase a good facsimile hand crafted from a ton of sugar, pigs gelatine and a shed load of additives and colouring. Once home place an eyeball at bottom of bowl

Make up a pineapple jelly with a little too much water so it will set all sloppy. Don't forget to add green food colouring in order to reach the required amount of unnatural ingredients in whole (you could use lime jelly but this would be cheating).

Retire to bed for a sleep of at least 2 hours. Upon rising, make a cup of tea and drink whilst watching trash TV. You need all your faculties and skills for the last lap of culinary delight.

Mash jelly and place over eye in bowl and all over rest of biscuit case. Decorate eye with black icing so that it has lashes, styes and spiders on edge of bowl.

Take a bottle of strawberry syrup and squeeze liberally all over dish so that it resembles oozing blood. Serve with a side dish of Phlegm and worm sauce (cream cheese with icing sugar, lime green colouring and cold cooked spaghetti)

Nigella...eat your heart (or eyes) out

DREADFUL SONG No.3: Enya - Orinoco Flow

Well, back from a short break. More of that later.... but for now I wanted to continue with my Dreadful Songs list.

Now, I know that for many people Enya can do no wrong but for me she can do no right with her dreadful, wimpy, pseudo-celtic drivvle...wibbling on lie a bad cold.

In the 80s this old tripe was everywhere. There seemed to be a taste for 'romantic' soft and especially celtic stuff. Maybe it was as a kind of antidote to all the desperate greed and consumption of the other 80s music: something calm and soothing -- except I never found this woman's work either of those things. I wanted to run around an Irish bog until I found herand apply gaffer tape to her mouth to shut her up.

At that point in time, you could bet your bottom dollar that if you went into a gift shop or some other emporium selling 'natural' stuff -- any natural stuff -- that this would be droning on in the background against the chinkedy chink of wind chimes and little models of dragons and wizards. Urghhhh!

All it ever was and is to me is some talentless woman dressed up in a bit of crushed velour looking miserable in a damp castle and warbling on about imagined fairytales and nature against a backing of synthesisers and multi tracking.

Can you tell I don't like her ;0) ?

DREADFUL SONG No. 2: Black Lace - Agadoo

Well, feeling a bit lonely over here.

Where have you all gone ;0(

Perhaps I've scared everyone away with my 'torture music'

Anyways, we're off on hols for a short break now so I thought I'd leave you with No.2 in my series of Dreadful Songs. It's 'Agadoo', you lucky folk -- the stalwart of all dreadful parties, cheap holidays and a towsled remnant of the 80s: all that lovely spikey gelled hair and leather trousers. It looked naff then and it looks naff now. Personally I've never heard this ditty all the way through because as soon as it begins I'm off --- to the loo, to another channel, to Venezuela --- anywhere that's not in listening distance but you may enjoy it ....or not.

See you all soon

Disabled or sick ?

Yesterday my attention was been drawn to an excellent article in the Guardian about one person's attempt to return to work after having made a partial recovery from the depths of M.E. In the article, Melissa Viney sets out the difficulties of trying to move back into the working world when one has a fluctuating chronic illness like M.E.

For a long time now, people who receive Incapacity Benefit were in a sticky position if they began to think about a gradual return to work because, as Melissa says

'....IB has been a rigid, all-or-nothing system; you can work, or you can't. It takes no notice of the many chronic and fluctuating conditions .....'

From next week (October 27th) a new system, ESA (Employment and Support Allowance), will begin. This will divide claimants into those who are deemed able to do some work and a much smaller group who are deemed unable to work and are therefore excused and given a higher rate of benefit. Since the Government aims to cut the number of claimants by 20,000 p.a. you can imagine that there will be an onus on DWP Assessors (who are woefully misinformed about conditions like M.E) to take heed of the new, more stringent criteria by which people are judged to be capable of work and try to get as many people as possible in the 'able to work' category. It will remain an all or nothing system: a system which fails to address the needs of people with fluctuating conditions and which makes it almost impossible for such people to return to work with any confidence or feeling of security. If their health begins to falter and they have to give up work and have a lot of time off work, how quickly will their benefits kick in and provide a much needed safety net in terms of finance and confidence ?

Apart from clearly setting out her story and imminent changes in the benefits system, Melissa's article strikes a chord because she discusses the issue of the difference between disability and sickness. It is something I have struggled with ever since diagnosis. I have spent my life around disabled people and have always appeared to be able bodied, healthy, resilient. In fact I have been living with M.E. for over 30 years and have often felt so unwell that I have not known how to get through a working day. I have had blocks of time off work (two weeks here, one month there, three months here, three days there). I've ducked and dived my way through College, University, career because I felt there was nothing really wrong with me that a few days rest wouldn't cure --- even when a different reality was staring me in the face: it isn't normal to spend every day feeling ill and struggling to get through ordinary routines at work and home but I was always told by doctors that I was 'just unwell.'

In my last job I worked for a charity which was developed and run, in part, by disabled people: people who used wheelchairs, people who had had strokes, were deaf, blind and so on. How could I compare myself to them ? They were disabled. I just felt poorly. Some of those people would be judged unable to work by the DWP --- though they did work jolly hard. Some were paid and some worked voluntarily. Even so there was a recognition that their lives were impaired by their disability and they were supported through additional benefits, support in terms of better access to buildings and information.

I felt then, before diagnosis, and even now, that none of that kind of support or understanding was available to me. I still have the sense that I am 'just unwell 'and with that an implication that there is a possibility that I can get better, back to normal. I have the sense that, somehow, in the pecking order, I am perceived by many to be more fortunate than someone who is seen as disabled. In some ways I am.

I can walk unaided mainly.

I can hear, see, speak.

I have a normal level of understanding and intellectual ability.

But all these aspects of my self are impaired in some way and every day, every moment is a struggle.

Nobody seems to really understand that there are days when, if I can get out at all,

I too need to go up the ramp instead of the steps,

I too need noise levels reduced so I can concentrate,

I too need the understanding that I have difficulties in terms of concentration and memory,

I too need a special diet and reduced chemical levels so I don't feel dizzy, sick , confused.

I too need reduced and flexible hours because I cannot work a full day and I also need a situation where I can phone in and say,'I just can't get into work today. I don't feel up to it and if I force myself today it will have repercussions and you probably won't see me for the next week because I'll need even longer to recover.'

I'm sick of feeling apologetic and always having to explain or excuse myself.

So who has a life that is more 'unfortunate', more limited ? Who is more able, who should have more determination to get out there and contribute instead of taking advantage of State handouts ? It's certainly not a competition and there's no point in trying to determine who is worst off and who deserves a sympathy vote. In fact it's impossible and pointless to judge because any kind of impairment, illness or disability will be subject to permutation, variability and by the character of the person it inhabits. There is no black and white.

What there is, as in so many aspects of life, are many shades of grey and a desperate need for recognition of the fact that most people who receive a State Benefit because of illness or disability, do so reluctantly and with a degree of apology and embarrassment. They would dearly love to earn that money and offer something in return when they can ...and that is the point ---when they can.

However, in order for them to do so, there has to be a much deeper level of understanding of people's fallibility in the face of chronic illness, a knowledge that life with e.g. M.E. can feel very fragile and insecure and that, if there is any hope for the likes of us (PWME) returning to the working world and contributing our undoubted skills, employers and their other employees have to understand that chronic illness deserves as much respect as disability.