HAPPY EASTER

Big Feet

Hasn't this little girl got big feet ?

FOR VALENTINE'S DAY

Oh the things that happen in the name of love............

Time - He's Waiting in the Wings

Time - He's waiting in the Wings: one of my favourite Bowie songs when I was just a little Glam Rocker with my platforms and satin jacket......and now he seems to be lurking and hovering in the wings and afraid to do his part.

Time in my head is kind of linked to energy. As I 've said before, I'm sure I've suffered from the bastard illness almost ever since I was a little Glammer in my own eye. I've had periods with no energy; periods with more energy and some periods when I had strange bursts of energy that seemed short lived and urgent like a sparkler fizzing towards the end of the wire: I had to be busy and get everything done before the energy disappeared up my own Roman Candle in a puff of smoke.

One of the things that seems to have changed in the last seven years since I became an official PWME is that time is all askew. My relationship with and experience of time and space no longer seems in sync with other peoples'. At the start, this was because my sleep patterns were so awry that I slept in the day, woke at night, crawled back at 3a.m. and woke at 11 a.m. or 1 p.m. I still have periods when my sleeping is askew but mainly they are just that --- periods, phases.
However, what I cannot seem to get used to ---- even after all this time ---is that everything takes longer.

My energy levels mean that I'm slower. My confusion and memory lapses mean I often have to do the smallest things several times over before they are right because I forgot where I was, where I put something, what I was thinking. My concentration means that I'm easily distracted or sent off in another direction. And then, even when I seem to have grasped the nettle and I'm finally on track, I get tired again so it's time for bye-byes and a nap.

The 'nap' might be 1 hour, 2 hours, 3 hours and that’s a big chunk of the day when it takes you nearly an hour to wash up the breakfast things and the children are home again by 3.30 or you have to be out at 2.45 to collect them.

I think that, apart from all the other numpty howdedos of the last few weeks, that is why I have become so tired and frustrated since Xmas: I had all sorts of things kind of planned, that I wanted to do and thought 'Yes, by the second week of January, I 'll have done 'x' and then I can do 'y' and that’ll lead to 'z'. That's how it was when I was at work. I was organised, methodical had a plan and stuck to it. There were always plenty of irons on the fire, pots on the stove, plates spinning (probably part of my downfall !) and now the irons stay in the bloody fire til they melt, the pots boil over and scald the hob and the plates wobble and topple and smash and I still cannot get the idea that it is all possible but that it just takes longer.

I will get there in the end but sometimes 'the pretty way' doesn't seem all that picturesque.

As a P.S. to the last post about the Arts Council's failure to support Disability Arts: there is now a Yahoo Group; Disability Arts Defence to campaign about the cuts and the erosion of the Disability Arts Movement

A little something to get off my chest

Now every now and then the Numpty Brain seems to reconnect itself to a long-gone era when I was relatively (you are talking about Cusp here) sensible, had a job with work-related responsibiliteis and cared deeply about the people I worked with and for i.e. disabled and 'excluded people'.

You may remember, if you've been here before, that I used to develop and co-ordinate Arts opportunities. Ironically, of course, I am now disabled myself in many ways and feel just as excluded from opportuntites as any of the people I used to work with, so my views about access to arts opportunties for anyone who is marginalised in society have not only persisted but intensified.

Last week ACE (Arts Council of England) released its decision about who will receive regular funding from 2008-2011[ here ] ...... and who will not[ here]. Who will not seems to include a variety of arts organisations that support and encourage the development of arts opportunities for people who rarely if ever come into conatct with the Arts or are encouarged to connect with their creativity. The organisations who will receive regular funding tend to be the big, showy prestigous organisations and it is part of ACE's strategy '.... to shape and support an arts sector committed to delivering excellent art to the widest range of people, and one empowered to take artistic risk...'

The Arts Council's Chair Christopher Frayling said:


'The arts organisations we’re funding will place the (Eastern) region on the international map for its world-class arts offer, and these include the network of outstanding cultural venues that wil open their doors over the next 18 months at locations throughout the East of England. As well as giving our communities access to high quality art, they will make a significant contribution to the regional economy through increased visitor numbers and additional inward investment.'


Giving communities 'access to high quality art' is all very well but generally that often means access as in
visiting,
watching,
listening,
looking at

rather than

thinking,
doing,
making,
feeling,
making sense of one's own existence in a community, society and culture.

If you look at the organisations which will no longer receive funding they are often those whose very raison d'etre was to encourage participation..... That may have meant being involved with individual Community Artists with wonderful people skills or large Company's who offer workshops but it still meant that young people, disabled people, older people, people in prison, people with mental health probelms and on and on had the chance to actually directly connect with art, professinal artists and their own creative spirit.

Give 'em their due; ACE apppears to recognise the importance of the Arts in people's lives. In a debate that ran through 2006-7 they concluded that:

• The arts are seen as part of our fundamental capacity for life
• The arts enrich our experience of life
• The arts offer powerful applications in other contexts

and yet they have pulled the plug on funding of all sorts of organisation whic directly promote those tenets

The Department for Culture, Media and Sport supposedly supports disability arts too and yet what really seems to have happend here is that ACE have happily dumped their own conclusions and withdrawn funding from Communty Music, Community Writing, Arts and Health etc. and nobody cares because it isn't 'sexy', it isn't 'seen' or sufficiently visible and it doesn't, therefore, apparently matter. What does matter is making it glaringly obvious that the money has been spent in a very obvious and loud way and where there was doubt about withdrawing funds, enough Big Names have enusred that ACE sees the error of its ways. The ordinary people don't have Big Names to speak up for them so they can languish at home.

What really saddens me is that, before I was ill, the stuff that ACE seems to be throwing out and abandoning was my passion. I worked so hard to try and ensure that as many people in this region had the opportuntity to see, feel, touch, smell and taste all sorts of Arts opportunities. Blind children worked with internationally accalimed orchestras; old blind ladies worked with rock musicians; people with mental health problems worked with poets, artists, writers; deaf people worked with textile artists, dancers; the elders in the Carribean community worked with each other and the young people and film makers and Desmond Dekker's backing band (!),; people with dementia foudna way to connect however briefly. We worked and connected as a community. Yes, we did work with big Companies (it wasn't about a narrow very local vision) to make the rpocess work as well as it could the process needed a Community Arts organisiation with local contacts, expertise in community development, passion for bringing national and international focused organisations to a rural and particular Community through people with local knowledge. Even within a County like ours, there are differences in araes of that County and nobody can know that unless they live and work here and their whole business is about accessing, interpreting and enabling those local people.

The organisation that I ran stil exists but in a different form --more narrow, more befitting a 2008 vision, and, as I see it more hobbled (have to be careful here because I still respect the people who run it). The point is that for those Community Arts organisations that DO still exist, their ability to exist will be all the more precarious, their vision more hindered and their standing within the Arts world will be all the more diminished because they aren't showy, aren't 'out there', aren't 'prestigious'. That's not the point of their existence.

In the Community Arts world one of the basic prinicples is that what matters is

'the process not the product'

and that's never going to be good enough for the Arty Charlies in London....damn them.

Slow progress, Sabian and Splod

Well, It's beginning to feel like the storm may be ending. I'm feeling a bit more like myself and I have a new dose of herbal tinctures on their way to promote robust health, vim and vigour (ha, bloody ha).

The scabby chicken is growing back her feathers and the dog, who nearly popped his clogs earlier in the week, is sitting up and taking notice of a lightly boiled egg thanks to medical intervention and over £300 of veterinary fees. The Credit Card company are still bastards and I'm still very muddly but shall never make the petrol/diesel mistake again (hopefully) now that I have taped a huge yellow sticker inside the fuel cap which says (DIESEL NUMPTY !) in big black letters. The insurance company are also still bastards and trying and trying to get me to see some other trick-cyclist but I am not being persuaded to don any trick-cycling-clips for the time being so they can go and rot until I have prepared another diversionary tactic.

NOW, dear Reader, despite the upties and downties of the past few weeks your very own Cusp hath not been idle for I have been busy with needle and thread and sock and crafting more Sockee Monkee. One of them was before Xmas and commissioned by a glamorous young woman in the most select environs of the Scottish capital.

This Sockee monkee is an alien monkee who has beamed down from another sphere. His name is Splod and he comes in peace and is in need of succour and shelter until he can return whence he came.

As he has found a home with two delightful children near Scotland he shall no doubt be introducing his fellow aliens to haggis and a wee dram in the future (it'll be a long, long, long time in Earth years since one Splod year equals one Earth century so the dear children will have him to stay for as long as they want....or longer if Splod likes them: you do all know that Sockee Monkee never know when to leave or shut up, don't you? Honestly, you could put on your 'jamas, switch off all the lights and be half way up the stairs to bed before some Sockee Monkee would even notice you were gone, as they natterchattered away)

More recently another child who lives mid way between here and there was heard to cry

'...and what about me.....Where's my Sockee Monkee ?'

and so, after the Festivities, out I went straightway, hotfoot back into the shed to create another little Sockee chum to join the throng.

His name is Sabian and he's a Skater Dude

--'grind those rails, bro....'

In truth he's a little wayward but basically he's a good kid and needs someone to show him the right way. I knew just the fellow and his Mum. They are very, very nice people and know how to make very nice jam so I feel quite sure that Sabian's new housemates will provide the sort of stability and conserves that he needs and that they'll all complement each other wonderfully.

If you meet these good people, please don't tell them about Sabian's midnight forays into the fruit bowl, will you? When he was here we came down one morning to find banana skins all over the kitchen floor and wheelie marks on the lino. I had to make him promsie he'd never do that again before I sent him off to his new home.

(If there are any spelling misatkes here please forgive me. My brain is still Numpty and Bloggers spellchecker will not work ~~~ that's my excuse anyway ;-))

WARNING: A long and exasperated rant about why 2008 is not turning out as I would hope and why petrol pumps should be Numpty Proof

Here we all are then --- mid January already and I 'm still recuperating from the Christmas holidays and trying to catch up on stuff. I must admit that I had positive thoughts for 2008 but so far life seems to be getting in the way and I am longing for a bit of peace without some demand being made on me.; the kids have been ill, the dog's been sick, one of the chickens has been mauled by the others and taken up residence in the utility room, I've had a tummy bug and everyone wants a piece of me. A part of me longs to move away to the nearby seaside and to a bigger house which we've seen and can afford but everyone elses' life here is settled and happy --- happy at school, happy at work, happy with nearby friends, so we stay and I am sat sitting here (as Hilda Baker would've said) looking at the same scenery.

Quite apart from all this, the old sleeping is not good. Last night I found myself sitting watching a dreadful word quiz on TV at 2.30 a.m. I utterly detest this sort of T.V.but I was so brain dead that all I could do was slob on the sofa with me eyes trained on an idiot, leering and gurning and encouraging me to phone in with an answer which would give me the chance to win £30,000.

To be honest I could do with the money.

Yesterday I was sitting here with daughter (who was also supposedly off school with a tummy bug) and the phone rang. Twas one of my credit card companies.

Now, dear reader, sickening though it is to some, being a Cancerian I am 'careful with money' (no I'm NOT tight, just careful) and so I always pay off the balance on my statements ---except this once on this particular card. I forgot to pay even the minimum balance because it was due on my son's birthday and my mind was numb with Xmas yet desperately trying to cling on to all the things we had to do for 'The Celebration' (which went very, very well actually).

Once the children were back at school I went through the paperwork which accumulates during holiday time and lo and behold discovered my error. I wasn't bothered. I knew I'd incur a late payment charge but it wouldn't be much since the total balance was only just over £65. Apparently the likes of credit card companies do not feel the same about such a paltry sum for as I was sat sitting the telephone rings and the lilting tones of an Indian maiden strive to reach me through a crackle of static and fizz.

Did I know I hadn't paid my minimum payment ? Yes

Why? I forgot.

Was I going to pay it RIGHT NOW ?

Yes O.K.

To cut a long story short I was harangued for the sake of £65 and threatened with all sorts, short of said maiden flying over and giving me a Bombay chinning. Not only that but, having paid up, two hours later a colleague of Miss Bombay Credit Card 2008 phoned and attempted to engage me in the same rigmarole....and then a letter arrived this morning reiterating all the same guff.

Gott in Himmel ! What is the matter with the world? Everything is automated and every computer spews out a nasty missive as soon as the scheckals don't immediately mount up. There's no humanity in all this. What if I 'd just been bereaved ? What if I'd forgotten because I'd just been told I was terminally ill ?

Karma is not on my side. Today, blurry from lack of sleep, struggling with a dodgy tum I determined to go out and buy two items of shopping before returning hot foot to go back to bed. Twas not to be. 'Must fill up the car with petrol' I thought '...don't want to be stranded at home with no petrol' (nearest petrol station is 4 miles away). Filled up, drove to shop, accomplished task and heigh ho, off home we go....except we don't because what has Numpty Head done? Numpty Head has put petrol in the new diesel car and the car won't start and numpty has to sit in the car waiting for an hour and a half for a trailer which takes car and Numpty to a garage 25 miles away to be flushed out and replenished with the right fuel. Numpty Head is £200 down on the old bank account.

Numpty is not pleased with self or world and wishes 2008 would get itself in gear and let me get on with what life I have left.

Not an auspicious start to 2008 or the first proper post of the year, I'm afraid. Maybe I should just go back to bed and wait for the clouds to roll by.....................

Wake up Cat

At least I CAN still rest --- unlike this poor blighter !

Horrid puss !

Resting

Free Chrissy Pressy from dear Dr Speedy. Beat the Rush !

Right my little blogging chums. Here's a very jolly freebie for next year, created and provided by our dear friend Dr Speedy who has given us all a Chrissy pressie by providing a download of a great 2008 ME Calendar with splendid artwork and chuckles.

Go on. You know you want one.

You're worth it................and now for the 'science bit': the calendar also blows all the myths about CBT and GET, so you're amused and educated all in one every month.

Bargain !

Get yourself over there now before they all run out ;-))

Click here for link

Merry Christmas and Happy New Year

Merry Christmas and a Happy New Year:

time for new beginnings and healing of old wounds

Thank you for all the support you have shown

and all the fun and laughter you have brought here

during 2007

Love Cusp xxx

Now it can be told

One of the reasons I've been a little tardy in writing post and responding to comments in that I've been busy making more sockee monkee. They was commissioned !! Yes...other people actually wanted them ! ;-))

Anyway, I do like making them and thinking up all the biogs that go wit them and it's lovely sitting in my everso 'umble abode thinking about the monkeys sitting about in other people's abodes all over the place.

This time it was DJ Kirby who asked me to make two: one for one of her sons and one for her niece. She was specific about colours the children liked but left the rest to me. For all sorts of reasons it seemed best to make cuddly soft monkeys so I used a different kind if sock and, because they are for children I felt I couldn't use buttons for eyes as I usually do so I had to find another way.

The soft towelling socks proved to be a bit tricky to work with but I think it was OK in the end and thus Chutney and Pickles came to life.

Chutney thinks he's really hard and sports a mohican a sparkly earring and is poking his tongue out. In actual fact he's a real softie and needs someone to look out for him. DJ's niece is just the girl for the job . I don't know if she likes 'Hollyoaks' but if she doesn't it'll be tough because it's Chutney's fave and she'll hog the remote when it's on TV

Pickle's a lot smaller and younger. He's pink and green stripes with a sort of mask over his eyes and number 8 on his back: DJ's son's favourite number. They both loves trains and Pickle likes to eat Jammie Dodgers. Mind you he is a bit grubby and doesn't like washing very much ---that's why he has flowers growing out of his tummy button

Best Blogging Buddies Awards

Right. Now I've done a bit more wrapping of presents, written another letter to the Insurance Company and been to another school Xmas concert I can get on with the next important thing --- listing my seven recipients for Best Blogging Buddies

1 Seahorse for her positive and beautiful blog and for the way she never fails to keep in touch

2 Amanda for her informative blog that keeps me going in an arty direction and leads me to arty places I didn't know about and because she also keeps in touch and is very supportive

3 To Maggie, who despite having had a really tough year and her own health problems, maintains and bright and cheery blog and has been supporting my blog since it's earliest days in 2005

4 To Azirca who has beautiful photographs, collages and artworks and is always supportive of my work and ups and downs

5 To NMJ who is a clear thinking, yet quirky literary diva who makes me laugh and brings a strange and enigmatic quality to the world of blog

6 To Pixie who is brave and strong and fallible and never afraid to say so and who always pops over

7 To dear Mr Speedy, who despite being rather poorly manages to maintain a brilliant funny blog about a very serious subject and who is now turning to cartoons to make me roar with laughter about a shared malady

I can't really send you a pressie in real life so this is my virtual yuletide gift to each of you.

Now it's your turn to each make this award to another 7 people

* I would also have made this award to dear Signs who has always supported me in blogdom but she already received one from Kahless and I know she's not greedy so she won't want two

David, Goliath, the bastards and the saviours

Dear NMJ has alerted her readers to a very interesting post by Caroline at INSEARCHOFADAM about bullying.

In all honesty, life at the moment is a real curate's egg --- good in parts. On the one hand I have the children who are all excited about Christmas and the joy of buying their presents and anticipating their faces in a few days time when they open them. I have the luck that two people have ordered sock monkeys which I enjoy making when I have the energy and I feel blessed and rather honoured to think that people who have seen my strange creations on this blog should want to own one for themselves. It's busy as ever at Christmas but it's all good.

On the other hand there is a lot going on in my head about 'the illness' --- the bloody illness from which you can never escape.

Now, at the moment, the way I feel generally is not terrible...it's just my usual state with the odd bit of nausea, headache, tiredness etc. thrown in: the gay abandon and pick 'n mix, selection box symptoms in the day of a life of PWME....but..... what's really getting to me is this bloody insurance business and the constant nagging pressure of being coerced into seeing a psychiatrist when I don't want to, don't agree with all the nonsense that the Insurance people spew out about my need to see him and all the phone calls, emails and letters that go into fighting Goliath. It's there all the time and it's beginning to drain me.

Reading Caroline's post last night signalled to me what this nagging feeling is all about and why it drains me so much: I feel I'm being bullied. I am being bullied. And though it's something I rarely talk about

because I'm 51,

because I have responsibilities,

because I have better things to do,

better things to think and talk about,

because it's in the past,

because I should be OVER IT BY NOW

is that I spent the whole of my secondary education being bullied and the feeling has never really gone away.

I can identify with everything Caroline says about the echoes of the past always ringing in your ears somewhere. There is always a part of me that is on the alert, waiting to be ambushed, waiting to be abused, denigrated, humiliated. I never really think what I've done is good enough, never really believe the good things will last. I do now feel I deserve the good things when they come ---- and it took me years to come round to that, but I still don't trust them just as I have taken years to trust people in RL.

Caroline is pleased she has achieved the goals she reached out for so as to prove her bullies wrong. NMJ, who was not bullied but who witnessed her kid brother being bullied, would like to form a Society for Kicking in the Heads of Bullies.

Me, I'm past wanting to kick in their heads. It's all too long ago. Part of me has given up the fight and just wishes it had all never happened, wish I could still talk to the other person who was bullied with me....the only person who really knew what it was all about. But that's too late too: that person was dead of a heart attack at 39, three weeks before our 40th birthdays --we were born one day apart.

The insurance fiasco is just another reminder of my past; the past I am always trying to escape but never will. I wonder if those bullies have any idea or any memory now of what they did. Do they realise how much their taunts still linger? When I see one of them on TV telling me about whether it will rain tomorrow or the sun will shine does he imagine me watching him and feeling a glimmer of hatred as the old film projects it's frames onto the back of my retina and I feel the fear and anger all over again. Bet not.

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

And then, on the other hand, there is light in this darkness ----- for who should come forth with a candle, bidding it to shine with a pure clear light but my blogging chum Kahless who awards me with a Best Blogging Buddies Award.

Couldn't have come at a better time, my dear. Thank you once again. Gives me real faith that there is still kindness in the world and strength to carry on fighting

David & Goliath

Not many posts of late. Too much going on. On the one hand I'm still being hassled by the Insurance company about my claim. They still insist I see a psychiatrist ---as is usually the case when they want to try and prove that someone with M.E. has mental health problems such as depression so that they can then say the condition is treatable and so it is possible to eventually return to work. I know I'm not depressed (though there's no shame in being so) and my Consultant has said I'm not. Even so the insurance company want to play this game of Cat & Mouse their way in order to win. Ill or not I'm a fighter and even though it's really beginning to get me down I'll not give in without a fight.

On a more positive note, I have had 3 orders to Sockeemunkee for Xmas presents (one is from that eminent 'Vedette Blogeuse' and renowned author NMJ) so at least I have something positive and jolly to bolster me up in the dark winter days and the pressure of being a little David in the face of Goliath.

PAPER CHAINS

We've been making paper chains from old magazines.

Hold on to your hats.............Christmas is nigh !!!!!!!!!!!!!!!!

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