Tuesday, October 16, 2007
Lubbly Jubbly
Lucky Cusp
Thanks Signs
Monday, October 15, 2007
Fraulien Poesie poses for pictures


............................with embellished cummerbund
Waiting for the muse to come upon her

Must quickly write this down
Sunday, October 14, 2007
Sock Monkey travels to new home
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.'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.'
Wednesday, October 10, 2007
Another foray into the world and what it's really like for me
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


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.
Saturday, October 06, 2007
Any gain with the pain ?
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
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.
Tuesday, October 02, 2007
Fifty of my favourite things
- Windy days
- Lemons
- Fried onions
- Whippets
- 2cvs
- anemones
- chick peas
- ultramarine
- Payne’s grey
- seaside
- purple
- turquoise
- Istanbul
- Paris
- Amsterdam
- French Yeye
- mayonnaise
- 1960s kitchen sink drama films
- Saabs
- Beach huts
- Donkeys
- Round the Horne
- Tony Hancock’s ‘The Rebel’
- Vermont
- Wallabies
- Hessian
- Smell of shoe shops
- Kingfishers
- Barn owls
- Cornish coast
- Old Disney
- harpsichords
- smell of coffee
- ‘Roadrunner’ cartoons
- pistachios
- Toblerone
- De La Warr pavillion
- International Style architecture
- Gard du Nore
- Harbours
- Eau Sauvage
- Groucho Marx singing ‘Lydia the Tatooed Lady’
- Singing (but away from other people !!)
- Gooseberry & Elderflower Alder Carr Ice cream
- Collecting sea shells
- Charity shop ‘finds’
- Old cameras
- Old photographs
- Hot water bottles
- Builders Tea
Sunday, September 23, 2007
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....' 

Ça ne fait rien.Friday, September 21, 2007
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/
Friday, September 14, 2007
Luuuuuuurve GOD Sock Monkey


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
Tuesday, September 11, 2007
Nest of vipers
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
Sunday, September 09, 2007
The party's over.......
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,
Wednesday, September 05, 2007
Monday, September 03, 2007
Just to get a bit of perspective on my own trials and tribulations:Respect, sympathy and stigma
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
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.
Saturday, September 01, 2007
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
Friday, August 31, 2007
Your children, my children and responsibilities
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 ?
Monday, August 27, 2007
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
Tuesday, August 14, 2007
The Co-Op is a World of it's Own
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.
- 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.
Sunday, August 12, 2007
New Sock Monkey clears away the blues
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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


