Chickens in a row

Such a lovely picture presented itself to me this morning

I just had to 'snap' it

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.