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

Where do these people come from?

Dear Reader,

You may notice that this post has no line breaks. This is not because I am a numpty but because, despite numerous attempts, Blogger is a numpty and will not put them in.....bl**dy Blogger !!!!!

As you'll see from below, We are in no mood for piddling about with Blogger today so We have posted the damned thing anyway.

My apologies if you feel that you need new eyes having scrabbled to the end of this post.

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

A quick post and a fierce change of recent tone:

Someone came round today (mother of daughter's friend) and in conversation asked what I did i.e. job. I said that I no longer worked as I wasn't very well most of the time...my stock reply which tells the truth but doesn't go into the details.

Many people are either satisfied with this answer (they don't really care about my employment situation and they were just making conversation) or are too embarrassed to ask for further details in case I say I have something they can't cope with ---- like leprosy or syphilis etc. etc.

Anyroadup this lady really did want to know and asked for specific details so I told her:

'M.E.'

'That like M.S. then ?

'Well no not really.... a bit..'

'What is it then ?'

'Well, I get really tired very easily and have all sorts of aches and pains and catch infections very easily and have troubles with balance and memory and allergies and things ?'

'Like that neurone thing ?'

'Motor Neurone disease ?

'Yeah'

'No not like that either'

At this point she turned to my partner in such a way that her body language said she had shut me out completely. In the past she has always treated me as an equal (though given this incident I'm not sure that is a compliment !)

'Ah....you the carer then ?'

Partner: 'no...not exactly........'Cusp' looks after this place and the children and I go to work....'

I had been ignored and brushed aside as a 'cared for'. I could have flattened her.

As my anger was beginning to subside a friend of my son's came through the garden gate. As you may remember he has learning disabilities and this friend (K) goes to the same school.

'She his little friend then ?

'Yes'

'Goes to the same school does she'

'Yes'

'Ah....got a touch of Downs has she... ?' (this within easy hearing reach of K.)

'No she doesn't have Downs Syndrome'

'What's wrong with her then ?'

'Well I think she was born with brain damage'

'Ah....poor little thing....all the same though aren't they ...not well (in the sense of ill health)

...if I had one I've always said I'd still look after it just the same...can't help it can they..'

'Go on W. (her other child) go and say hello to her...you can watch her if you like.....'

(As if K is some kind of exhibit..........)

At this point I had to go indoors in case I picked up her lighter and set light to her as a metaphor for the fire raging within !!

Dear reader, my indignation is not because I now have a chronic illness which some would consider makes me disabled, nor is it because I have a son with various disabilities. I spent many years working with disabled people long before my son was born and long before I became ill enough to give up work. My indignation is at the ignorance and insensitivity of this woman.

Where do these people come from ?

Where have they been in the last 25 years? On Mars ?

Have they not noticed attitudes changing ?

Have they not seen or understood that we are all people who deserve respect and consideration regardless of disability, colour, age, religion etc. etc.

I am now in a very difficult situation since my daughter is very fond of her friend and she is, in fact, a very sweet and well-behaved child (so to give her her due, this wretched woman must do something right........oh Christ why do I always have to be so FAIR !!!!!).

On the other hand I'm not at all sure that I want my daughter around people with these sorts of attitudes.

Here is the thorny predicament of the parent not being able to choose the child's friends and letting them go out into the world and discover the dangers and dodgy attitudes for themselves.

I want to protect her...........................

Chickens and Awards

We have had some stunning weather of late with the apple tree heavy with fruit and the hens producing more offspring.

Here are the latest two, Blackbum and Bumble with their Mum Snowbell

They've been having very educational morning activities; learning how to forage for seeds and scraps, learning how to move across treacherous lumpy ground, learning how to keep up with Mum and each other and not to lose one another in this great big place the big NoFeathers call a run

But occasionally it all goes wrong and they are left high and dry

There are other chicks too. This little chap belongs to Speckle

...and his sibling

'You looking at me...are ya ?'

In the end of course this flourishing of chicks is all down to these chaps

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

......and on a completely different tack I am amazed and delighted to tell you that the lovely Prada Pixie has selected me for an award. It really does mean a lot because some of you
might remember that this is in fact a revived blog, in as much as after a 6 month run in 2005 I gave up and decided it was a waste of time. Now second time round it is much more fun thanks to the blogging chums I have encountered.

Dear old Pixie hath bestowed the

to me because she says I '...bring (sic) endless bad taste music to my (sic) site and deals with ME with amazing fortitude......' Well I'm not sure about the latter but I do try my best with the former :-)) .

The Awards come via the Writers Review and according to the rules I must now nominate five other people for an award so here goes:

I nominate Feltbug for the Inspirational Bloggers Award for all the work she puts in to scouring the Internet and finding the most artwork which inspires and informs

I nominate Azirca at Speak without my Voice for the Creative Bloggers Award for her persistence in maintaining her creative spirit against the odds

I nominate Maggie at Liverpool Leftovers for the Courageous Bloggers Award for the way she has managed to keep blogging despite her own illness and caring for others at home and in the M.E. community (most people, I think, do not realise that she also does an awful lot for PWME behind the scenes)

I nominate Ana at Singing Hawk for the Creative Bloggers Award because of her inspirational and beautiful images but also because she questions the warring ways of the world continually but is also never afraid to have a fun with her blog and blogging chums. The sublime and the ridiculous co-exist in Ana World

I nominate Abide and Watermark (same blogger) for the Inspirational Bloggers Award for her beautifully crafted blog full of inspiration, creativity and courage in the face of M.E.

See I can be quite sensible when I want to be !! x

They're back !!!!

Now some of you have only yourselves to blame because you've been encouraging me....

Yes these are the same Schwester and obviously the old alternative HRT of yodel berries and Alpendufdler has strange side effects.

I do wonder if, when they remove the costumes (if they can!) they are the same shape underneath ? Too much kartoffeln und kuchen mit
schalg ?? Yum

Apologies

O.K. so now you all think I'm nuts because I keep posting up these YouTube videos of the most bizarre acts I can find from the 1960s. I can't help it. I love that sort of thing and always have....maybe I shouldn't impose my strange tastes on other people ?

Changing the subject I am perplexed by a dilemna.

How does someone with a chronic health condition attempt to move on when progress is impeded by bureaucracy and the need for profit over welfare ? (There, told you it was a change of subject)

The matter in hand: last week I saw a job advertisement for a vacancy as a display assistant in a local High School. Having nearly fallen off my bed to think the County now pays people solely to put up displays, I thought....

'I could do that'
'It's only 6 hours a week'
'I might be able to manage that'
'I should at least try'
'I might begin to be perceived as a real person out on the world'
'There could be face to face contact with adults other than my partner and a few Mums at the school gates.'

I sent off for the application form and job description. Upon receiving it I nearly faltered at the first hurdle: one of the listed requirements for the job was

'Must be able to maintain and use staple gun'. (I kid you not)

After 5 years at Art School I wasn't sure about this but I screwed up my courage and thought 'No, I may be just a chronically fatigued numpty to some people but I know inside me there's a real professional staple gunner just dying to get out.'

So dear reader, I applied myself to the application in hand. This was a daunting task for a job of only 6 hours a week for, being a County Council post, I was required to set down my entire personal, education and employment history with two references and a police check if I was successful.

After over an hour of form filling I was 'done in' --as is the common parlance hereabouts.
I thought, do I really want all this hassle? But, I decided to climb that mountain and forge that stream.

Having completed said form I began to worry, as is my way, and I thought I'd better just double check this job will not affect my benefits.
No. It was OK.
Then I thought ' ..but what about the nice people at the Insurance and Pension companies who have agreed to waive my premiums because I am/have been/ can be so poorly and who regularly hassle me with long forms asking me, my GP and the hospital consultant the same questions about whether I'm better and whether I can/when I shall return to work ---and pay my own bloody premiums?'

There is the rub, dear reader. I thought I cannot ask the companies themselves about a maybe, possible toe-in-the water attempt at being a 'real person' again for 6 hours a week, for they will be suspicious. They have been known to employ covert beady-eyedness.
No, I shall ask my financial/insurance-y chum who knowsaboutthesethings.

He said he did know .....and any sign that I was perhaps and maybe able to do any voluntary work or limited paid work would be seen as the perfect excuse to make me pay my own bloody premiums (at this point nearly £100 per month) so I was best to screw up the job application and forget the whole thing unless I wanted to put our family budget in jeopardy.

So beware my PWME (or other chronic health conditiony) chums. In the eyes of insurance companies etc. you are apparently ill or well, black or white, working or not working and there are no areas of grey

I shall go back to being a numpty who feeds chickens, makes sock monkeys and seeks out obscure 1969s German girl groups who look like Dick Emery in drag. To be honest I wa snever sur ein the first place. Despite judicious pacing, Reiki, herbs, vitamins, prayers to all the Saints and a few daily blasphemies, my energy is still not 'tip top' or 'band box' and all activities must be approached with great care, cunning and forward planning, BUT I was prepared to try and give it a go.

N.B. For years I did pay own premiums because my ex-employer was too stingy to provide a pension. I also forked out for critical illness cover so it's not like I feel I'm sponging off said companies --- just getting what's due, ---- but I would like the opportunity to try to be in the world again without the risk of messing everything up --- health and budget

Horrible or what ?

Just to put things in perspective.......not everything from the 60s was so good.

I'm sure the one second from the left is Dick Emery.

Ohhhh you are awful !

Thoughts on Optimism: Childhood and The Sixties

Strange confluence of two ideas or thoughts today.......

As anyone who comes here more than once or twice will know I love all sorts of things from the 1960s.

Lately I keep reading about a relatively obscure girl group from that era called The Cake. I had heard of them before and ocassionally heard them on radio but never seen them. Now, thanks to the brilliant offerings on You Tube, there are two short videos to watch and what a revelation !: the most extreme, maybe druggy NY girl group you could wish for with weird staging, a singer who looks like Penelope Tree and stands catatonically still and two other girls who dance round her like a couple of eels on Vaseline

I cannot imagine anything so extreme yet so strangely 'entertainment' as this today. One of the clips is from an old 'Smothers Brothers' show --- real family viewing and yet here are these three cool chicks grooving away. That incongruous meeting epitomises everything I love about the Sixties.

Later in the day I was walking the dog through the corn fields nearby. The sun was beginning to hide for the night. Fat startled pigeons were flying out from the corn as we passed, greenfinches were chirruping, there was a quiet munching from the horses in the next field. A hum and tinkle of a party in the Big House rang across the meadow. I looked up into the sky and was suddenly in a more innocent time .... I felt a brief surge of that feeling you have as a child when you realise what an amazing and beautiful world you live in and feel full of a kind of wonder and feeling of optimism. It lasted seconds. In my childhood it could go on all day.

I know that I am seeing that era through rose coloured glasses and through the glasses of a happy childhood but where does that optimsim, that freedom go ? Where has it gone? Did life in the 1960s seem full of possibility to me because I was a child ( and do my own children feel it now ?) or because I grew up in a time when it felt like we were in a time of plenty.... full of ideas and ideals and possibility.

I know that, in reality, beyond my cosy, happy suburban childhood every kind of cruelty, evil, cynicism took place just as it does now. I know that there were wars, assassinations, homelessness, poverty and disease..... but somehow there seemed to be a kind of hope that it was possible for humnanity to improve itself and those situations.

That optimisim doesn't seem to be there now.

Is it me ? Is it because I am getting old or is the world actually a sadder, harsher, grimmer place?


~~~~~~~~~~~


Reflective Cusp today.

Watch the video and laugh if you like (it is quite funny in its way) but enjoy the innocence and the freedom to look and move, think like those three cool chicks

It's the start of the summer holidays .......

Yesterday was the first proper day of the summer holidays and with two young children to keep amused for six weeks I was beginning to feel a little wobbly. This was not helped by a friend coming round with her two children who are good kids but lively.

One allowed the guinea pig to escape and we haven't seen her since.

In all honesty I think we all wanted a bit of peace and a chance to 'bed into' the new routine before we had visitors.

Anyway, today's a better day and things feel a bit more normal and relaxed. The sun is shining and I have two happy kids and a happy dog(the friend brought her dog too: it's on medication which makes it desperately hungry so she steals all the food out of our dog's bowl and drives him insane)

Yesterday I was feeling like this song. Today I'm more chilled............