That's NICE

Some of you M.E. Peeps may have heard that the One Click Group is taking NICE to court over the latest guidelines about M.E./CFS.

Recently, Ann Robinson (no, not that one with the ginger hair and curled lip) wrote an article in The Guardian: Sick, mad or bad? saying that she cannot she what is wrong with the guidelines which suggest that CBT and GET (Graded Exercise Therapy) will be beneficial to PWME.

What's wrong with that idea is that CBT is a method through which one is supposed to be able to retrain the thought processes behind certain activity. It is used in a variety of contexts and with people with a variety of conditions.

Now, CBT may be useful in the sense that, for those who are having difficulty in adjusting to a restricted existence, they may gain insight into ways in which they might adjust to their plight. However, having been offered and accepted my GP's kind offer of CBT 5 years ago, I found that the therapist put great emphasis on ways in which she thought I could retrain my thinking processes to overcome my fatigue, pain, disorientation and muddled thinking. Now, if those aspects of myself had been psychologically based ---e.g. if I was clinically depressed and, as a result, the body was willing but the spirit weak, and I therefore found everything just too much effort, this may have worked. What she failed to understand was that I was not depressed and that the spirit was all too willing to get up and get on with whatever I desired but my body was weak and unwilling to let me. That's why PWME are so cross and agitated and frustrated about the idea that CBT can help them.

Similarly, the notion of GET is based around the fact that one is kind of 'out of condition' and if one can only motivate oneself (which again implies the idea that the problem is in the mind) to get up and get out, incrementally increasing the amount of activity, then one will eventually reach a state of nirvana where the idea of doing the London Marathon is all tickety boo.

Once again, when muggins was very, very poorly 6 years ago, muggins was persuaded to try this 'therapy' by my GP. Silly really ---I should have known better and my body was telling me to listen to it but no, I thought the GP must know better. He's such a nice man and so quietly spoken. He means well. He means well but he so deluded. I'm sure that my months of trying to walk further, walk faster made matters worse. This outcome is not unusual and GET has been shown to make people with M.E. worse --- not just in the short term but in the long term and sometimes permanently.

So, Ann Robinson, that is what is wrong with the Guidelines --- they are balderdash and not only that but they perpetuate the notion that
a) if only PWME would get up off their fat arses and TRY and
b) get over the prejudice about 'therapies' and the nuanced implication that they (PWME) are, in some way, mentally ill,
then they would get better and could go back to work.

This doesn’t help anybody and if you look at the Ann Robinson article via the link above and the message board that links to it you will read the most astonishing tripe and bigoted nonsense about PWME from all sorts of people. Thankfully, dear NMJ has put the point of view of PWME forcefully and told these twits a few home truths.

And another thing whilst talking of bigots and being misunderstood......

The proposed reform of Incapacity Benefits will most likely make people like me feel even more judged, intimidated and harassed than we do already. Only last year I was repeatedly asked to go for a Personal Capability Assessment at my local DWP office. I can only reach this town (11 miles away) on my very best day (few and far between and what any normal person would judge to be a 'sofa day')and this request was during the summer holidays when things are at their most hectic and I struggle every day.

I refused and refused until, in the end, my GP sent a letter and miraculously I received a phone call from the DWP telling me that I need not go and they would not contact me again for 3 years. They had not understood my condition or contacted the GP first and they had not understood the strain their type of persistence puts upon people who are already struggling to exist.

Last week, my friend who lives opposite was asked to attend the same office for a PCA. He is the same age as me, ( not that old) ,has a chronic heart condition, has recently become profoundly deaf and cannot walk further than abut 10 metres (with the aid of a stick) without being breathless and having to sit down. In all honesty he probably has about 5 years of life left if he's lucky. His own GP and Consultant have told him so and whilst he tries to adjust to this fact he is harassed to go for the PCA. In fact when he got there, the assessing doctor spent no more than 3 minutes with him and said it was ridiculous to even think about him working.... Yet still the pen pushers at DWP made him go.

The new assessment that comes with the reforms next October will, apparently, assess you for what you can do rather than what you cannot do. For example:
Can I use a keyboard and answer the phone and take a message ?
Yes I can do both.
Can I walk more than 30 metres?
Yes sometimes.

What none of these assessments ever seem to assess is how often, how regularly and consistently you can do any of these things ---particularly when you have a condition like ME/CFS, which fluctuates, day to day, minute to minute. They never take into account that inorder to do quite ordinary things like go to the Co-Op in the car two miles away, buy a loaf of bread and come back might entail a slow and steady preparation and a over an hour's rest afterwards. They also never seem to think about the notion of returning to work within the context of a life rather than as an activity in itself.

For example, on a good day I might manage to work for a morning (desk bound/sitting down sort of job) but which morning that is can vary. Presumably an employer would wish me to specify which morning I would show up for work but I never know from one day to the next how ill I'll feel ---so who will want someone who can be so unreliable /

If I was assessed as being able to return to work (even on a part-time basis) on the basis of my ability to use a keyboard and answer the phone, and that was all I had to do then I might be able to return to work but that doesn't take into account the actaul businees of working within the context of my life. There is still a house to run, children to care for, shopping to be done etc etc. It's the everyday existence stuff that takes whatever energy and wit I have. Holding that together is more than enough without adding to it by going out to ork as well. I cannot do it all. And what’s the betting that if I did return to work and into a job supplied by the DWP (so that they could tick a box and make their figures look good) that it would be a dead end job completely alien to my experience and expertise?


In the end, my suspicion is that a lot of this is down to money, politics and big business. It suits both the Government and the Insurance industry, who are in sway to each other, to uphold the Psychiatric Lobby who insist that M.E/ CFS is psychological rather than neurological. If it's psychological it's fixable by drugs or therapy, wizardry and mind bending and then we can all go back to work and save the Government and the Insurance the bother of paying out for what is due to us: us, who paid our taxes and contributions, who set up insurance plans and paid our premiums, who often went on working trying to pretend everything was all right when it wasn't and wanted and want desperately to be well and get back to a normal fulfilling life where we're not dependent and spending our time defending ourselves. The savings the Government and Insurance Industry think they might make would be better spent of proper Biomedical research and care instead of money making and ego building

Walking back to Happiness

Recently, I was browsing the Web and came across the site for an arts organisation in Essex. As I looked through the various posts and articles I was intrigued to notice that they were running a project at the school where my father was Headmaster when I was a child. The school holds many happy memories for me, partly because I loved my Dad and partly because when I went to work with him I was always spoilt by all the pupils.


In those days the school was set in a great big Victorian Mansion. In the late 60s this was demolished in favour of a flat-roofed structure which was supposed to have all the latest mod cons but it was never the same because it lacked any character. The old house had a huge staircase that descended into the main hall and all the classrooms had once been grand living rooms or bedrooms and had huge doors with big brass handles. The entrance had a lovely door with stained glass and coloured tiles on the floor. As soon as you walked in the whole place smelt of polish and paper and lovely cooking coming from the kitchens. The old caretaker's dog, Rusty, would come to greet you; the only dog I wasn't afraid of as a child.

Outside, the old stables had been turned into more classrooms and there was a diminutive and intimidating old spinster teacher who had somehow managed to persuade the LEA to let her continue to teach past her retirement age. She was very eccentric and lived with her father who was very, very old. At dinner time she would be in the kitchens asking if the leftovers were needed -- which of course they weren't. Quick as a flash, she'd produce a carrier bag and sweep anything she thought looked tasty straight into the bag.

'That'll do for Pa's tea.....'

The school, a Special school for children with moderate learning disabilities, was in a very poor and deprived part of Essex. Many of the children and their families were well known to Social Services and many would come to school in winter with worn out shoes and no coat. There weren't many opportunities for them at home though there was often good deal of love.

My father always thought that all children, but especially children with learning disabilities, learnt best through experience rather than just through books and pictures. There were lots of trips to places of interest: galleries, factories, the nearby docks, London, an annual week at the seaside in Dovercourt and lots of opportunities for acquiring practical skills at school. There were vegetable patches and rabbits and chickens in the grounds and an old car that the boys (only the boys....this was the early 60s !) could take apart and put together again. There was a meadow in the grounds and they'd tear round, learning to drive. There was a lovely old walled garden with the fig trees. One summer holiday staff and builders dug away and installed a swimming pool for the children and every time I hear Helen Shapiro singing 'Walking Back to Happiness' I'm transported to my 4 year old self sitting on the edge of things, watching and munching on sponge cake, gazing at the bumble bees and hanging round Rusty the dog's neck.

In the 1960s there were generally far more opportunities for work and most pupils were able to get a job: working in a factory, driving a van, working in a shop, hairdressers, manual work. None of these 'career options' may sound very exciting but they were bona fide jobs with some prospects, rather than some form of activity created as part of a scheme. The pupils had the possibility of being accepted as part of the work force and part of society.

Nowadays there seems to be a kind of tokenesque feel to the opportunities available to similar young people. They can go on to a Resource Centre or go to College and then to work experience but, in the end, many of these 'jobs' are just part of some scheme that only lasts for a finite period and never leads to a lifetime of work. The world has moved on and the sorts of jobs that those pupils could do either don't exist or are more technical and need greater expertise. Standards for even the simplest tasks can be ridiculously high and so the sort of folk who attend Special schools don't have an opportunity to take their place in real society --- their days consisting of Centres, sessions, projects, collecting trolleys round Asda's car park to make Walmart feel better about itself and show it's caring, socially aware face. Many of my father's pupils just went on to be part of the crowd --earning a crust like anyone else.

In later years, it was not unheard of for us to be walking together as a family and a cry to be heard from behind us

' Mr D !!!!.............'

and there would be an ex-pupil, gaggle of children and spouse wanting to chat to my Dad about the 'good old days'. We never lived anywhere near the school --about 15 miles away -- but these impromptu meeting could happen anywhere from Essex to Wales and even, once, on a day trip to France in the middle of Boulogne.

...'Mr. D.!!!!!!'

As often happens, life turns in strange ways. Our first child was born with an array of disabilities and has moderate learning disabilities himself. Happily, he's doing well and attends a Special School not unlike my father's. Whenever we attend my son's Xmas concert there's always a lump in my throat as I remember the Xmas concerts at my Dad's school with all the littlest children dressed as angels; tinsel halos, holding candles and standing on those grand stairs in the Hall with my Dad playing the piano.

In my eyes, and in those of many pupils who knew him, my Dad was a funny, kind and concerned man. He died nearly 9 years ago and I still miss him dearly. He had Alzheimer's and one of the last proper conversations we were ever able to have was 4 weeks after my son was born. The irony of our son having disabilities didn't escape us and I looked forward to having Dad's advice as we raised our first child. It was not to be as he rapidly sank into decline. Eventually he was more disabled than my son.

Now my son is nearly a teenager and strong and healthy; doing all the things that other boys his age do. He has a disability and he goes to a good school but I know that his upbringing at home has also been touched by everything I learnt through my father; watching and taking in all the concern and warmth with which he tended those children so long ago

New Sock Monkeys

Two new sockie monkie: this time created for my daughters' friends who are identical twins and lively as a barrel load of said creatures.

Voila..............................Wokkit and Phizz

Wokkit and Phizz are (nearly) identikal twinz. Wokkit is a bit more taller and Phizz iz a bit more smaller and they arent very good at speling yet.

They luv eech other very much and luv cuddlees on teh big chare
Wokkit is the moor dominent of the two and like to be protektiv. He is older by 3 secunds. He also like to giv kisses to peeple that he like. He hav longerer arm sso he kan reech hier up in the trees for nutz. Wokkit and Phizz luv nutz.

Phizz is smaller and lik to be cuddled by his twin. He pretend to be braive but reely he his two liitl and yunger by 3 secs so he needs more reassoranz. He like cuddlz too. He lik hunny and becoz he hav smaller armz it iz eesier for him to get his arm inside the hole in the tree to reech.

Wokkit and Phizz are lukky becoz they hav found two girlz to look arfter them and those girlz know they like nutz and hunny and must bee in the bed beforr 7.30 or they can be propper litll munkiees

Deelite

Enough of all this M.E. misery already.

A soupcon of deelite for all you groovers.

Yowzah !!!!!!!!!!!!!

M.E. on 'You and Yours', BBC Radio 4

Just to let any PWMEs out there know, Radio 4's 'You & Yours' is having a week long feature on M.E. starting on Monday. Well actually it started today but I didn't know until after the broadcast. However, there is a Listen Again feature.

There's also a very interesting debate going on on the BBC Discussion Board

However, don't get you hopes up too high because today they had an interview with David Puttnam who reckons he has M.E. He has given similar interviews in the past, including one for The Guardian last year. If you listen to his description of symptoms you'll soon realize that he almost certainly does not have M.E.

All the same at least the thread of features in next week's programmes will highlight the condition and may get people thinking

Poison and ghouls

The last few days have been miserable thanks to my sensitivity to chemicals and perfumes which never ceases to amaze and infuriate me. On Friday we ran out of our usual Eco washing up liquid and bought some Fairy. Within a few hours, my breathing was laboured, my eyes watering and my tongue sore. I can actually taste the perfume of the liquid in my mouth.......and this is all from someone else washing up and me just inhaling the smell --- not from using it myself or using crockery washed in it. The worst thing is that this reaction also includes an overwhelming desire to sleep.

It was only last week that I ventured into Tesco in order to buy some binbags which are in the same aisle as cleaning materials and air fresheners and marvelled and raged against all the 'stuff'. There they all were: row upon row upon row of harsh chemical cleaning products, of air fresheners and anti-bacterial wotnots.

What in heavens name is wrong with people ? Why do we have to have so many products that all do the same thing and which, in any case, are matched by home made natural products like lemon juice, bicarb etc etc. Why can't we have just a few simple things that do simple jobs instead of this kind of ersatz, paranoid, germ free home-iness with plug in thingies that exude synthetic smells of fresh bread, Tahitian evening strolls, freshly laundered linen. In a few weeks we'll be encouraged to buy some other gizmo that replicates Christmas smells. The amount of waste in terms of packaging, research, promotion must be phenomenal and yet people still buy this toxic junk. If I want my washing to smell of 'clean water' why not wash it in clean water and hang it on the line rather than wash it in a 'clean water' perfumed powder and dry in a tumble dryer ? Why do I need to have my clothes wreaking of jasmine and orange blossom ?

Anyway, having been poisoned by some toxic washing up liquid I forced myself to go with my daughter to our annual Halloween pilgrimage at the local Market Garden Farm Shop (which is also where we buy all our Eco products and organic veg). Each year they put on a fantastic Halloween event with costume competitions, face painting, scary walks, good food, pumpkin carving and so on. This year's was one of the best.

There were loads of children -- tiny, tiny pumpkin people with legs, tiny tiny red devils with forks, little 3 year old witches with broomsticks and great big hairy teenagers with white faces and blank eyes ---they weren't in costume ;-)

There was mulled wine and the burger stand ( organic and proper bread) with, apparently a big steel saucepan from which you could get soup; except when you tried, there was a boy under the table who shot his head through the hole in the bottom of said pan and let forth a blood curdling scream.

The scary walk led us through a corn field with dried out maize way above our heads. There was a red devil over 6' tall with a real goat on a lead, a Hannibal Lecter lookalike mooching about in the corn at the side of the path --there one minute, gone the next,-- a snake charmer in the field, a huge glowing skeleton in a far off tree and all the screaming you could wish for.

Our last few minutes offered up a little gem.

All evening we'd noticed a very plump little ghoul, about 7 years old: hair gelled back, face painted blood red with spiders' webs across it in black, black one-piece costume with a forked tail. She looked like a chubby, sweet goblin really though she tried her best to look scary.

On our way out we saw her standing alone, holding the vegetable man she'd made earlier and looking this way and that.

Maybe she'd lost her Mum ?

She looked quite calm, but maybe we should go and ask if she was OK.

As we approached we realised that she was not in distress at all but,rather, extremely put out by the fact that her mother was elsewhere

" Oh for Christ's sake, where is that ruddy woman ?' " she muttered to herself.

With her mild expletives and sour, exasperated expression, it was the scariest she'd looked all evening.

Henri Salvador - Juanita Banana

This is totally infantile humour but there's just something about it that I love: particularly the quivery feathers at the end

A gruesome little Suffolk tale

During a little tete-a tete with the lovely NMJ and Anna MR the topic of death masks arose (no, dears, don't ask). Anyroadup, I mentioned that in the local museum at Bury St Edmunds there is the death mask of the man who murdered Maria Marten of the Red Barn. Lo and behold, Anna MR, who is a 'thesp' amongst other delights, says she has played said rogue on the stage.

However, she has never seen the 'face' of the scoundrel whose persona she inhabited so, my dear Anna, this is just for you:

On May 18 1827 Maria Marten, 26 year old daughter of mole catcher Thomas Marten, left her father's cottage at Polstead for the last time. She said a tearful farewell to her young son, her sister and her stepmother, then set out to meet William Corder, her 24 year old lover, in the Red Barn. At his request she went dressed as a man. Her family never saw or heard from her again.

In April the following year Thomas Marten was prompted by his wife to search the Red Barn. He discovered a shallow grave which contained a body, recognisable from the clothing as that of Maria. Shortly afterwards, William Corder was arrested in London. He was taken to Polstead for the inquest and sent to Bury St Edmunds to stand trial.

Corder's trial took place on Thursday 7 and Friday 8 of August 1828. Throughout the trial he claimed his innocence. Nevertheless he was found guilty and sentenced to death by hanging. His body was to be anatomised (dissected).

Shortly before the sentence was carried out, Corder confessed. He was executed on the Monday August 11, at the county gaol in Bury St Edmunds. Despite heavy rain

thousands of spectators attended. The body was taken to the Shire Hall, where it was

cut open and laid out on show.

Thousands of people filed past to view it before it was removed for dissection at the West Suffolk Hospital.

The skeleton was kept, and the scalp and part of the skin were preserved.

The surgeon, George Creed, later had an account of the trial bound in leather made from Corder's skin.

If you want to know even more you can go to here and follow the links

Lubbly Jubbly

Dear Signs has bestowed two (!) awards upon me at the same time: a Nice Matters and a Creative Blogger Award.

Lucky Cusp

Thanks Signs

Fraulien Poesie poses for pictures

And lo (no, don't ask me why everything has a biblical slant at the moment) the black hole spat out the many things it had been holding for many a day. Amongst them was the cable for transferring images from camera to computer and so now I can show you some pictures of Fraulein Poesie when she briefly stopped over before going over to The Great Forest.

As you can see,Fraulein Poesie is very particular about her appearance. She always wears jewellery -- earrings, necklace etc. and her famous purple trousers

............................with embellished cummerbund

She always carries her quill and notebook for jotting down ideas

Waiting for the muse to come upon her

Must quickly write this down

Now, of course, Fraulien Poesie is very happily settled near The Great Forest with Signs and Mr Signs. She must be very happy. She has a bohemian past and really relishes the exquisite company she now keeps.

Lucky Poesie !!

Sock Monkey travels to new home

And Lo...it came to pass that a Sock Monkey appeared in the night sky over Suffolk. She had been travelling for many a long day and night to reach her benefactor Cusp. Yeah, for she had toiled and yearned to move from her native Dusseldorf to Suffolk.

And Cusp looked upon the monkey and said,

'Truly Fraulien Poesie...' ,for that was her name,' .... thou
shalt be better off in the home of a great and true writer.

There's not much here to nurture your creative writing spirit for we are a house of visual artists and people-helpers, old chickens, old dogs, old rabbits and cavies....'

'Thou shalt be transported through the magic of the postal system (when it
is working) to a better place; a place where only great writers live....to a
forest on the edge of Publication Land.'

And so it was that little Fraulein Poesie took up her quill and her little purple notebook, dressed up in her finest purple pants and jewellery and winged her way to The Great Forest to meet Signs.

I believe that Signs has agreed to foster, but if you really want to see what happened next you must pop over to dear Signs' blog.

I would show you myself but my camera cable is lost in a big hole in this house which seems to be swallowing all manner of stuff at the moment: my cable, daughter's Nintendo, partner's spare mobile, set of keys.....all disappeared without trace!

No matter. Do hop over to Signs and help her to welcome Fraulien Poesie to her new abode

Another foray into the world and what it's really like for me

Yesterday I had to gird my loins again and 'just get on with it.'

E, my son, had to go to the dentists and the dentist only works the same days as my partner so I had to take him and then drive him on to school 15 miles away. I really wasn't up to it but 'needs must' as they say and it did give me some extra time with E. who's a jolly old soul and a pleasure to be with (unless it's sleep time and he really wants to watch 'Casualty' !)

Having done the deed I sat in the school car park and got my breath back. Here I was faced with the usual dilemna : it's pouring with rain, I'm tired out and I've spent the mornig so far chasing a child round to hurry up and get ready for the dentists, driven 15 miles to school and seen he's OK for tuck, completed homework and clean clothes and has been soothed after the dentist. Shall I take out some time for me and if I do, do I have the energy ?

There has been a show I've wanted to see at the Gallery in Bury St. Edmunds for weeks. I'm actually very tired. My head aches, my muscles are burning, I have a sugar-low coming on and I really should turn around and go straight back home and sleep BUT I'm sick of being beholden to 'this bastard illness', as Signs calls it, so I decide to say 'Sod it' and drive in to town anyway.

I find a space and walk slowly up the hill to the gallery. I always have mixed feelings about going there as it's a place where I had many meetings when I was working and I was very involved with all sorts of changes. It reminds me of how I used to be and what I could do. I don't like to be reminded. It makes me feel inept and a failure if I'm honest. I know 'this bastard illness' isn't in my head. I know it isn't something I can get over with a bit more will power (I'd have been better years ago if that were possible ---I'm good at will power) but being reminded of what I used to do, be able to do is not a comfortable feeling. And it reminds me that I have done and am doing all I can to combat the ME bogeyman and that awful feeling that no matter what I do I seem beholden to him or it.

Nevertheless....onward and upward....up the hill as well...and into the gallery. Up a steep flight of stairs. I should use the lift which was installed for disabled access. I was part of the committee that campaigned for the lift. I can't use it. I'm too proud so I walk up.

I get my breath again and try to switch my head into positivity and smile at the reception lady. I'm here. At last. I sit in the 'coffee and arty books section' for 5 minutes to adjust to the new altitude (it's a long way up here).

Eventually I have enough 'go' to actually look at the work on display. I'm really glad I made the effort. The show is called 'Traditional Skills, New Thinking Stitching and knitting for the 21st century. It features some great artists including Michael Brennand-Wood

Consequences of Proximities: All Night Flight. Mixed media on board.100 x 100 cm.

and a Dutch woman, Felieke Van Der Leest who crochets the most exquisite outfits for little plastic animals

Now I'm back in a world I understand. Now I'm back where I'm supposed to be. I find inpsiration in these strange objects and images woven with real hair, fancy knitted cushions with lace and ruffs surmounted by a lamb's skull. I can't be a part of this world in the way I used to be. I can't be this energetic person doing 3 jobs at once. I cannot even volunteer to be a Gallery guide because by the time I've driven here (even on my very best day) I'd need a guide for myself. That world has gone. I need to move on. I can make a new world.

I look at my watch and the parking ticket is nearly up. I have to get back. I need to hurry but my legs won't let me. I'm frightened going down the stairs of the gallery to street level in case I fall. My pride gets in the way. If I do hurry, is the Insurance Company using 'covert surveillance' on me to see if I'm more able than I say? ( This is no paranoid joke, dear reader, for it is well known in the ME community, and well proven, that these Companies will use such tactics to try and wriggle out of paying out on a policy).

Eventually I get back inside the car. I just sit and close my eyes. I've done it. Seen the show. I'm 'finished' now and still have to drive back the 15 miles home down the A14 in, what is now, torrential rain. Driving in this state is a challenge at the best of times. I have the radio on quite loud, the window open as much as I dare (with the rain), the air vents full open and the blower on full too to try to keep me alert.

Pulling in the drive I know I've been out of the house for 2 and a half hours. I go straight to bed and sleep like the dead for another 2 and a half hours.

Today I'm sore again, fit for nothing...other than lying on the sofa and typing this three times to get it right with no mistakes and no slip ups.

It's been worth it.

Any gain with the pain ?

Recently Signs was commenting on one of Flutter's posts and said how PWME (peeps wid M.E.) are part of the 'All Pain But No Gain' Club.

Funnily enough I was kind of spouting this phrase yesterday when my dear friend S. (the one who lives in the Commune) ventured out to visit us for lunch. This journey is no mean feat for her. She is a wheel chair user, has recently spent 15 months in bed and has only just begun to sally forth into the big wide world again. Her energy and pain levels are as fluctuating and precarious as mine.

Our meetings are arranged via innumerable e mails which gauge our respective energy levels, levels of near-suicidal boredom with our own surroundings, the amount of circular conversations we are having with the same people who happen to be around, or chickens, or cats or dogs and trying to come to a final decision about how to meet, our medical conditions and the World in general.

Anyway, yesterday we finally got it together and met here, had lunch and chatted away til the cows felt so at home that they came walking into the living room and settled in on the sofa

I have always had much respect for S. We have known each other for over 15 years and worked together for ten; hatching up many ludicrous and very amusing arts projects over that time. She has been a wheelchair user for over 30 years and been through many of the emotions I have experienced more recently whilst coming to terms with a new life thrust upon me. Before recently taking enforced early-retirement she kept up a relentless pace at work with good humour, grace, integrity and a real passion to do well by the people she worked for (people with learning disabilities).

We'd made arrangements for her to arrive here by about 10.30 --- giving us plenty of time to natter, have lunch and still leave time for me to have my daily sleep at 1.30. No matter how hard I try, I cannot get beyond the need for a long sleep mid-day. My energy levels are such that after few hours I sink into a sort of comatose dopedom --- like a sleepy bumble bee on a too-cold day, droning away in a kind of stumbling stupour.

Inevitably, things didn't work out the way we planned. I have been feeling pretty grim, of late, and even nearly called off our lunch date. I was feeling particularly dopey and untogether yesterday. However, I was aware that S was really looking forward to venturing out of her place and I didn't want to disappoint so went ahead. With so much to catch up on, and us being us, we nattered away, oblivious of time: me resting on the sofa and mumbling away like a kind of opiated Barbara Cartland dictating yet another novella.

Lunch wasn't started until 2.00 and by the time we finished it was 3.15. My chum had said several times that it was my nap time but I wasn't going to miss lunch and more 'catch-up' so I kind of (mis)quoted Signs

'.....I hardly ever get to see you now and there's no gain without pain'

After lunch I fell into bed and slept like the dead -- happy-dead because I'd just had a bowl of apple cake and whipped cream and enjoyed a lovely conversation, but near-dead all the same.


Today I'm really paying for it: dragged myself to the library with my daughter, still feeling near dead and very giddy and putting on the brave face, so there is 'pain' --- but the gain of not disappointing a close friend and the lingering pleasure of a few hours together after so long apart is gain enough for me.

Lydia the Tattooed Lady

Number 42 on my list of Fifty Favourite Things !

Fifty of my favourite things

1. Windy days
2. Lemons
3. Fried onions
4. Whippets
5. 2cvs
6. anemones
7. chick peas
8. ultramarine
9. Payne’s grey
10. seaside
11. purple
12. turquoise
13. Istanbul
14. Paris
15. Amsterdam
16. French Yeye
17. mayonnaise
18. 1960s kitchen sink drama films
19. Saabs
20. Beach huts
21. Donkeys
22. Round the Horne
23. Tony Hancock’s ‘The Rebel’
24. Vermont
25. Wallabies
26. Hessian
27. Smell of shoe shops
28. Kingfishers
29. Barn owls
30. Cornish coast
31. Old Disney
32. harpsichords
33. smell of coffee
34. ‘Roadrunner’ cartoons
35. pistachios
36. Toblerone
37. De La Warr pavillion
38. International Style architecture
39. Gard du Nore
40. Harbours
41. Eau Sauvage
42. Groucho Marx singing ‘Lydia the Tatooed Lady’
43. Singing (but away from other people !!)
44. Gooseberry & Elderflower Alder Carr Ice cream
45. Collecting sea shells
46. Charity shop ‘finds’
47. Old cameras
48. Old photographs
49. Hot water bottles
50. Builders Tea

Sock Monkey with a twist: Mlle. La Raie

The latest sock monkey in the 'range' is, in fact, not a monkey at all. She was made at the behest of a friend of my daughter who said 'Can you make me a Sock Monkey like hers, but not a monkey....more of a doll sort of thing....'

This is the result: Mlle. La Raie who is a kind of hybrid since she has no muzzle, different ears, no tail and also has hair. She is very stylish. Stripes are very 'in' this season in Paris (she says) and so she is 'a la mode' as always. As you can see she has had a lock of her hair dyed 'pistache' and tied it with a little violet ribbon. She's quite the coquette, je pense.

Any'rue'up, this is the result of playing around with stuff and I'm actually quite pleased with her, though it has to be said that someone said recently that my sock monkeys are beginning to look more and more like JuJu dolls and, taking an objective look at Mlle. La Raie, I am tempted to agree.

Ça ne fait rien.

Tommy Roe - Dizzy

I've been feeling a bit dizzy the last few days: dizzy and a bit weak. S'what happens with ME.

Incidentally, for those of you who are fellow PWME do have a look at Dr Speedy's excellent blog re. the dread disease. He's a GP with ME and comes at all the bunkum about how to treat it with a fresh eye

http://niceguidelines.blogspot.com/

Luuuuuuurve GOD Sock Monkey

Time for a bit of jolliness I think so I've decided to show you my latest sock monkey.

He is very saucy and is a Luuuuurve God.

His name is The Very Rev. Aluicious Lordy Lordy Amoreuse

He's keen on religion as you can see from the crucifix given to him by The Pope

and he is generally partial to a bit of 'bling' hence the gaudiness of said crucifix, piano brooch and golden earring

However, he's also not averse to the occasional slurp of Communion vino

the old vino doesn't always have that beneficial effect however and he is inclined to get a bit amorous with the ladies.

He's very proud of all his 'jewels'

but, what with the flash image, the drinking and his favourite party trick.......

(lighting his own farts.......shhhhhhhhh!)

Things don't always work out so well in the Lurve Stakes

Nest of vipers

Feeling frightened and angry today.

The more I look into this whole insurance business the more I realise what a nest of vipers I am being pushed towards. The more I read about this cohort of psychiatrists who use words like 'deceit', 'malingerer', 'fantasy', 'deluded', 'controlling', 'devious' the more I realise that I shall be perceived as a manipulative scoundrel with dubious mental health who has brought this whole condition on myself and who is determined to influence and sway everyone around me to believe what I believe so that I can sponge off the State, grab handouts and payouts from the Insurance companies and waste the valuable time of my GP.

There really does seem to be a sort of conspiracy about the whole business --- collusion between the State, governmental department, health care, insurance and big business and a game of sparring, reputation and ego boosting amongst the medical profession.

I'm trying hard not to let this get me down and not to back out of my claim. I will not be beaten and I will not be insulted by such patronising and insulting attitudes to someone with a genuine neurological condition

The party's over.......

Well, the good news is that I'm back on a more even keel. The dip has passed. With a lot of rest and a visit to my loyal Reiki healer, I got to the party yesterday and it was a real treat. The party was a joint 'do' between 4 friends to celebrate their 50th and 60th birthdays. They were able to share the event easily because they all live at Old Hall in East Bergholt which is one of the longest running, if not the longest running Communes in England. The Hall used to be a monastery --- indeed I remember when it was a monastery in the 60s. I have been 'around' the place most of my life and have several friends who live there. It's an interesting way to live which requires commitment, patience and an ability to give and receive easily.

The party (which flowed on all day) was a joy and, as well as meeting up with my friend who lives there, I met lots of old colleagues from work. That was a mixed blessing: it was really lovely to see them and great to feel part of something again...to kind of regain my place in our little gang again and talk about mutual interests. We are all involved, or have been involved in the Arts and some form of social work (to us the phrase loosely). It's an easy flow of interests and conversation . The blessing was only mixed because it reminded me of what I have missed so much whilst being stuck at home for 7 years.....the banter, the in-jokes, the putting to rights of the woes of the world, ....just the length of time we've all known each other and the interwoven nature of our lives.

We got there about 2 and left about 5. I couldn't do any more. Today, I'm left with some lovely new memories and a kind of sad winsomeness for more of the same. However,the renewed contact with old friends has led to invitations to more get-togethers and lunch and private views, so if I can pace myself and make the effort I hope to to lose touch again.

The bad news is that I am in a battle with my pension plan company who want me to meet with a doctor who is the devil incarnate when it comes to attitudes to and treatment of people with M.E. If I refuse I'm afraid they'll refuse to go on paying my premiums. If I accept their cordial 'invitation' I'm afraid the stress and upset will make me more ill for a while. This is a man who, amongst other things, lists one of his expertise as 'malingering at work' and has interests in an organisation involved with the Insurance business which says they belive that 'M.E. is the new banner word for neurosis'.....nice !

Anyway, as ever, life's a mixed bag but for now I had a lovely time yesterday and the sun is shining so I shall forget Doctor Evil and enjoy the day,

Edith Piaf - Mon Dieu - 1961

A bit of class for you to enjoy while I relocate my mojo

Just to get a bit of perspective on my own trials and tribulations:Respect, sympathy and stigma

Just to put things in perspective vis a vis my recent glums...here's something to consider which brings to mind people who are far worse off than me:


Goldfish has written such an eloquent piece about how 'impairment is a morally neutral aspect of the human condition' and hence anti-stigma campaigns about disability/impairment are virtually bankrupt because the only place they lead to is pity and sympathy when what people with disability want and need is respect and acceptance.



She's right, of course. The anti-stigma stuff doesn't work at all and the sympathy and pity is no help to someone with a chronic illness or a mental illness (which Goldfish goes on to discuss) but it's hard not to feel sympathy, distress when you see someone with mental illness in a pitiable state.



I say this because in our little country town there was a thriving drop-in centre for people with mental health issues. When I was still at work I developed some projects with them too, so I saw the place from the inside. It was warm, welcoming and had well trained and experienced staff who offered a wide range of formal, informal and creative opportunities. Best of all the people who used the centre loved it, appreciated it and for many it was the centre (pardon the pun) of their lives. It had a warm inclusive feeling and was like a family.



A year ago, the funding was pulled. Nobody understood why and nobody but the people in charge of the finances at the Health Authority wanted the service pulled. There were petitions, demonstrations, articles in the local paper...all to no avail. The place closed and the worst fears of the community and the people who had used the Centre were realised: people in the town who had mental health issues had almost nowhere else to go; at least nowhere that was open six days a week, 9-6 with an open-door policy. So what do we find ? We find what I witnessed yesterday.....



There are two men, in particular, who wander about our town and the surrounding countryside all day and some of the night. They have mental health issues and probably problems with alcohol and drugs. To me, they are not scary or frightening. I feel genuine concern for their welfare and worry whenever I see them, but then I've 'worked in mental health' (as the saying goes). In the old days these fellows would have almost certainly found a welcome at the Centre and they would likely as not have used it. Many similar people were regular users in the old days. No doubt they are attached to some residential facility even now but as they are deemed to be no danger to anyone and deserve autonomy they are free to wander where and when they will. This is right and proper but when you see these same men filthy dirty, talking to voices, gesticulating and, yesterday, spending much of the day under the bushes by the petrol station looking lost and terrified like frightened, wounded animals you wonder what has happened to the world and who on earth really cares for these guys.



They do deserve respect but they deserve dignity too and there's no dignity for them as they are. They are shunned and ridiculed, pitied and feared. Left to their own devices how can they ever hope not to be stigmatised or understood. You can spend all the money you like on anti-stigma campaigns but until you work on the core care needs of people like these men it's all a waste of effort and money.

If life's a race, I'm a straggler

Over the past few weeks I keep being brought up against my past. It's a past I don't like to dwell on; a past I've learnt to brush aside because it's too painful now. It's a past where I had a job, money, work colleagues, respect, loyalty, appreciation and felt a part of the world. It's a past doing a job I loved (most of the time), that I'd worked very hard to get and worked very hard to stay in.

First there was the job in the local paper --- a Development Worker for a project that I initiated seven years ago and working with someone who used to phone me for ideas and inspiration (this sounds big-headed but it's true). It was a project very close to my heart for personal as well as professional reasons. I'd love to do that job, love to apply. I even fantasised that I would. 'It's only 18 hours a week....I could manage that....'

Who am I kidding ? The last few weeks with the kids at home 24/7 has been a nightmare in terms of energy. I love my kids more than my own life. I fought hard to have them too but this bloody condition makes even enjoying time with them hard sometimes. Going back to work would be a breeze in comparison except that where I write 'breeze' I should write 'Force 3 hurricane' because the holidays have been Force 5 and you can't stand up in one of those and I can barely stand up now.

The second jog was going to the seaside at the weekend. We drove down and past where I had a beach hut ---given up 6 months after I got ill because I could no longer afford the ground rent and anyway at that point I couldn't even get out of bed, let alone go to the bloody beach. Even now it's nigh on impossible to get there because it crackers me. We drove past where I used to work every Monday afternoon (sessional work) and to a cafe we went to all the time and past a place where I made a film for TV in 1999. I could see myself...blundering through my peaks and troughs of energy even then, never letting on and determined not to be beaten by my health. Even then I was more ill then I realised or anyone else knew. All of that is gone. I cannot fight the bloody illness anymore in that way. I can't pull out reserves because there are none -- only the meagre wisps of energy that float about in my body like mare tail clouds on a sunny day; except none of this is sunny.

Jogs and bad luck always come in threes and the third came today. On Saturday, we're all meant to go to a big party for an old friend who I used to work with. God knows she has had her own health problems for the last year and I haven't actually seen her face to face for 6 years. I'm praying I can get there and I can't stand the idea of disappointing her because she's told me several times how much she's looking forward to us being together. When we both worked (she's taken early retirement now on health grounds) we cooked up all sorts of jolly things and made each other laugh and laugh. It wasn't like work but like a jolly day out. That's gone too. Then this afternoon after the friend had send a round-robin e mail with directions for Saturday I got a surprise e mail from another old work colleague who I haven't heard from since I first left work nearly 7 years ago. It was a really sweet message asking how I was and saying she is looking forward to seeing me too. She had moved miles away so that is why I have not heard from her but it also reminded me of all the other work colleagues who were, apparently so close to me and with whom I worked so closely (and socialised) and who seemed to vapourise about 2 months after I got ill. Suddenly they were too busy and I wasn't even able to talk properly at that point.

You can see I'm in a dip. I've had to work hard, over the past 4 years especially, to forget the hurt of 'friends' disappearing, the pain of having to leave a job I loved, of starting and then having to abandon things I'd started, to try to ignore avenueswhich call to me because I know I have the mental and emotional capacity to achieve them but not the physical strength or stamina. This condition can be like being in a straightjacket. I've had to learn to appreciate what I do have , appreciate the small things and find new ways of being. I've had to learn to try and forget things I would love to do, places I'd love to go, people I'd love to see, big ambitions because it's too difficult to achieve or would compromise my ability to attend to everyday duties and responsibilities.

What I also realise now is that, for years, undiagnosed and being told I was neurotic, mistaken, deluded, lazy, not trying hard enough, I tried all the harder to be like other people. It feels and always did feel like everyone else could go faster than me and I was lagging behind. I either couldn't keep up or kept up and suffered inside.

Now, some days, most days actually, I believe I've come to terms with how things are, how I am, and what is possible and what is not and where patience and pragmatism are better options than delusion and relapse.

Some days, the reminders are too strong and I can't keep up the pretence that this compromised life is bearable. Today is one of those days and I'm straggling behind everyone else.

Beggin' - Frankie Valli video re-mix

I love this video at the moment. Always loved Frankie Valli and the original mix of this has all sorts of lovely memories

Your children, my children and responsibilities

Well the school hols are nearly over and in the air I can feel mixed emotions: some kind of relief that I won't have the pressure of trying to manage all the extra activity on my meagre levels of energy --which are almost at rock bottom now ; some kind of guilt that I feel some relief; some kind of ache that the little monkeys wont be around all the time; some kind of fear and trepidation from the little monkeys because they are going back to school ...and in the case of girl monkey to a new and bigger school.

Having children is such a mixture of instinct, love, your own upbringing, the social pressures of the time you live in, your own childhood. It's like a trifle made with fruit cocktail: it looks lovely and is in layers but there are also bits of fruit which are difficult to stomach and digest (in my case that would be those ghastly little grapes that you only ever find in fruit cocktail).

You may remember the dear soul who asked if my partner was my carer in the most toe curling manner some weeks back. For much of this holiday she has been about and around and so have her children. She doesn't actually live here but her mother does and so she is often nearby with her children. Quiet often her children are here with her mother and without her. Her mother is elderly and disabled. Her mother has her own problems. The woman herself has her own issues. She will also do anything to find other people to keep an eye on her children because she has her own 'issues' and simply cannot cope. We feel a certain sympathy for her...and a certain anger that she will sometimes find all sorts of ways to offload her children. They have spent a lot of time here this week: their grandmother has been away and so their mother has been house sitting and hence her children have been with us more than her.

There are two children: a girl who is diligent and quiet and a good friend to my daughter. She is also already at the school my daughter is about the attend and will help her to settle in. There is also a little boy who is a tiny little ruffian with the naughtiest smile who is a little gem but can be very irritating as he knows no boundaries ! (though often, even when he's been naughty, you have to put on your best stern face because you really just want to laugh and/or give him a cuddle!)

Last night an example of his mother's concern and care came to light.

All the children had cycled up the road to play. They all cycled back at tea time and our two stayed here because their tea was ready. The little scrap wanted to stay for tea too but we have been feeling that we must occasionally put our foot down and encourage his Mum to give him his tea herself, so we phoned her and said W. is here and is his tea ready ? No she said. W. says he wants to go back up the road then ..but he will be alone because our two are staying here to eat. That's OK she says...he'll be all right. We think...will he ?....how much responsibility do we/ should we have to take ? No, on balance, he probably will be OK. He's not our kid and it's not for us to judge.

Five minutes later the clouds gather and it looks like it will pour with rain. We phone 'Mum' and say W is still up there and it looks like rain. You really should go and get him. I can't leave the dogs on their own she says. We raise our eyes to heaven and debate what to do. We're sick of taking responsibility for her kids and shepherding her but we like the kids and feel sorry for her and them. We know the only way to get people to take responsibility is to hand it back to them so we decide to let her get on with it and start to eat tea.

Two mouthfuls in, the phone rings. It's 'Mum'...she is almost hysterical. W. has fallen off his bike and cracked his head open. Someone has seen what happened and brought him and his bike home in their car ... His head is bleeding and she doesn't know what to do. We down tools and utensils and partner ( a trained First Aid-er) goes up and takes a look. It's a tiny cut, but as is the way with scalp wounds there's loads of blood. Partner cleans the wound and advises Calpol, lying down and a close eye for the next half hour. Mum was going to phone for an ambulance and is puffing Lambert and Butler all over him.

Half an hour later Mum phones and W is OK. Drama over.

Should we have let him stay here when they came back for tea. Should we have gone to get him when Mum said she couldn't leave the dogs. How much responsibility do you take for other people's children, for other people's mistakes, for your own ?

What would you do ?

Classic Sesame Street - Edith Ann's sandwich

Ah......my dear Cuspians.

I fear I have been neglecting you; not through spite, malice or lack of love but because I am caught in the mire of 24hourchildcareandin thefourthweekofthesummerholidaystoo. Last week was tops because the rain (oh God the rain !!!!) meant the little dears could not hurl themsleves hith and thith on biciculars et al.

Ne'er mind.....here is a child-centred video for you to enjoy

Assuring you of my best intentions at all times, dearest reader.........

Love Cusp

The Co-Op is a World of it's Own

From the last but one post, you may be thinking that I am in a grump. I am. I have tried to shake it off with sock monkeys, chocolate, my favourite toons and silly YouTube videos but all to no avail. I am grumpy...not nasty aggressive but grumpy.

Now, dear reader, when Cusp is grumpy there is nothing that works up the grump into a passionately felt MAJOR GRUMP than a 'BAD EXPERIENCE IN THE CO-OP'

I should explain that, despite the fact that the Co-Op has the most laudable purchasing policies, a, no doubt, almost invisible carbon footprint, ethical banking, organic produce and has even improved the standard of their TV advertising, usually the shopping experience in that company's stores is abysmal.

I therefore have to admit that, were it not for the fact that we live in the country and the Co-Op is the nearest store, I would never dream of entering those hallowed portals....but it is convenient and when one has a very M.E. day it is invaluable...sometimes. At least better than schlepping over horrid Tesco or even more horrid and tacky Asda.

I have had the misfortune to live in four places where the Co-Op was my nearest convenience (and you can take that term 'convenience' in any way you like)

1. When I was a child our nearest 'mini-mart' was said establishment

2. When I lived in a small Essex seaside town the store was just opposite to where I lived

3. and 4. Since we came back to Suffolk 20 years ago, wherever we have lived, which ever village, the Co-Op has always, unfortunately, been our local grocery shopping opportunity.

And now, my dears, I shall tell you why, in my humble opinion all Co-Ops are the very nadir of a celebratory and uplifting shopping experience:

1. All Co-Ops seem to smell of a garlanded combination of Persil, wet cardboard and string

2. All Co-Op employees seem to have been especially selected to be either

a. very stupid

b. completely lacking in any common sense

c. completely untrained in any knowledge of stock, how the till works, how the chip and pin machine works, opening hours, how to lock the doors, how to unlock the doors, how to locate the Manager, how to locate the cards where you can post an advert, how to locate the key to open the door to locate the cards you need to post an advert, how to serve anyone with any glimmer of interest or a smile or without talking over your shoulder to the person working in the till beside or behind you

d. be afflicted in some way with a personal hygiene problem, bad breath, a nervous tic and sort of glazing over of the eyes ----- as if the lights that may be on in the house are probably from a 10 watt bulb but nobody's home anyway

3. Anything you need will not be where you expected it but you will often find things where and when you didn't expect it e.g.

• the kitchen roll towels will not necessarily be near other paper products but they may be near dog food.
• You may be looking for baking goods but you would not expect to find just above them a range of hairslides/dog chews/batteries. This is a very special trick of the Co-Op where they hope to shock you into a surprise purchase so ......those items about which they are unsure get dotted hither and yon about the store...usually on little hangy things just above items which have no relation to those below. I presume the Co-Op premise/logic is that you are so shocked to see an item in so incongruus a location that you will be forced to purchase it.

Another example:

• you may also find a range of mops in cardboard boxes in the middle of the aisle (where you can trip over them or swerve your trolley) right next to fruit or you will be browsing the beverage shelves but also be 'surprised' by a lovely and bizarrely displayed range of bargain deep fat fryers, tatty last season Xmas goods (in August) or discount water pistols.

4. The other trick is especially designed for people with chronic illness who cannot walk too far, stand too long, have giddy spells, panic attacks or breathing problems or any combintaion thereof. Having spent three times as long locating what you need compared to shopping elsewhere, you then come to the checkout with the aforementioned problems of staff and technology. Not only this but, because of those problems, you have to wait much much longer than elsewhere since, in general the Co-Op virus tends to spread and mutate so that the customers are also infected and become ditherers and wibblers. Not only that but the Co-Op have a special trick where they can keep you standing longer than you'd expect.

• One trick is to allow you to wait until you get to the till and then say in a loud voice, 'Sorry, I'm on me break now..' and disappear (in other stores this person would be replaced by another employee...but not ion Co Op world).
• Another trick is to say 'Oh no, sorry....I only started today/yesterday/last week/month/year.....don't know about this...get the Manager.....' and then leave the attending throng to wait for 20 hours whilst s/he is located.
• The last trick is the best .......'Sorry....till's stuck...oh dear....'.at which time one long queue moves over, like a sequence dance, to join the other long queue in the hope that they will soon be served and out of the place.

The best trick the Co-Op played was one which befell a friend who also had M.E.

Twas the night before Christmas (well two days before actually) and he thought that even though he felt like death, he must get himself across town and redeem the vouchers he had been saving for a big cuddly dog which his niece had longed for. He has little money and so this was the only way he was going to get the toy. He dressed and struggled over to the larger store where they were available. As he neared that palace of consumerism his only thought was 'Thank God...nearly there and then I can get the dog and go home to bed.'

He turned the corner and approached the store. A notice: 'Sorry this store is now closed for refurbishment....please redeem any vouchers at our 'x' branch'...which was the one nearer to his home

Right.....all off chest, 'nuff said....................................

*Apologies to any dear reader who has worked at the Co-Op or has relatives who do etc I don't mean to offend ...but I still think the stores are *****

New Sock Monkey clears away the blues

Right....I was a right misery yesterday:grouchy at every thing and everybody (though in RL I managed to hide it all very well) so I've decided that today, though I still feel much the same I shall attempt to shake off the grumps and delight (?) you with a new sock monkey

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

This chap was made for another friend's birthday (all my poor old mates are getting these dratted things !). He (the monkey) is called Mikael and is a Polish immigrant who is looking for work in the gardening-line.

He's a bit of an old hippy and has grown a beard to go with his Lennon glasses

Gardening is his first love and his profession -- hence the daisy on his paw

After a hard day's gardening he likes nothing better than a natter in the kitchen with a cuppa at his side