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

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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.

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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

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......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............

My Top Ten things not to say to a PWME

Having read the new CDC’s CFS toolkit she developed a new kind of fundamental resistance against analytic psychotherapy. Any ideas, Dr. Simon?

Cartoon by Michael Sobetzko. See http://sacfs.asn.au/download/calendar_2007_english.pdf

At the Ouch website there is currently a new TopTen related to M.E.
http://www.bbc.co.uk/ouch/play/topten/

Having read it I was trying to think up ten things of my own not to say to a PWME(with response --- spoken or otherwise --- in blue )

1. I bet you enjoy having more time at home: all that time to catch up on things
Yes I love being stuck in the same place, day in day out when I used to have a life and some freedom. I've caught up with all I want to thank you

2.You need to build up your stamina.
You need to s*d off

3.Try walking a little further each day
I've tried that. There's actually a medical term for it called GET. It nearly killed me. Why don't YOU 'GET' off your behind and do the same if it's so good for you

4.What did you used to do ?
I used to do a job that was useful, brought in money, gave me a sense of fulfilment and usefulness. Thanks for reminding me: just the boost I needed

5.What did you used to be ?
Well the last time I looked I used to be an adult human being like you but maybe I'm not human anymore since you're speaking to me like a 5 year old alien

6.It's your own fault. If you hadn't.......
Well, that's as maybe (though doubtful) but maybe it's your own fault that you're drunk/ignorant/cruel/a busybody

7.If I were you........
Similar response to No.2

8.You're depressed........
You're 'sad' within the confines of contemporary lingo

9.You need to find an interest........
I've got one and it's not you, so please go away

10.Have you tried ..........?
If its been recommended by a Doctor, Health magazine, self-help book, alternative practitioner, well-meaning stranger and has cost me money, further decline of health, pain, frustration I probably have tried it. Kind though it is of you to suggest 'x' I have to decline your suggestion. Thank you and goodnight.

I have to point out that I have never uttered any of these responses, being a well brung child of the 50s but I have certainly thought them when feeling bitter and twisted

Oh B****er, I've messed up the tagging lark

I've messed up: tagged Sally when she'd already been tagged by Goldfish. Silly me.

I tag Kahless instead.

OMG I've been tagged: 8 random facts about Cusp

OMG I've been tagged. First time. A Tag Virgin. Don't quite understand it but I'll give it a go.

First the rules:
1. Let others know who tagged you.
2. Players start with 8 random facts about themselves.
3. Those who are tagged should post these rules and their 8 random facts.
4. Players should tag 8 other people and notify them they have been tagged.


I have been tagged by Goldfish

8 Random facts about Cusp:

1. When I was little I nearly drowned in the sea. I came out saying I had seen all the fishes down there and they were all wearing little coats. Strange child. Everyone knows the only coat a fish can wear is a coating of batter
2. I hate strawberries and anything with a strawberry flavour
3. When I was about 10 I saw Valerie Singleton in the street and asked her for her autograph. She was less than gracious (to put it mildly) and I have never forgotten it.
Bitter ? Moi ?
4. I wish Moira Stewart still read the news on TV because I think she has grace and elegance
5. I just don't get Ricky Gervais' popularity
6. I can still cry with laughter at Road Runner cartoons
7. I love too be near water ---- that's why I'm typing this in the bath (ha ha)
8. Even though I went to art school for 5 years I think my best act of creation was my part in the creation of our children (all together now......ahhhhh !)


I now tag
Amanda,
Behind the Surface,
Signs,
Sally,
Seahorse,
Singing Hawk,
Maggie,
Anne-Laure

Birthday Trip

Well as Ana has kind of let the cat out of the bag (see comments on last post) I shall own up to having celebrated my birth last week.

I'm funny about birthdays: not the ageing process. I'm just happy if I can get through a day feeling unscathed and enjoy what's offered by the Great Beyond., but I do feel funny about telling people about my birthday in case they feel obliged to say nice things or give me things when they don't really want to.

Anyroadup, this birthday was jolly good and lasted two days because my lovely partner had arranged a secret trip for me. I was driven to Ipswich with my two children (who had permission to stay off school for the afternoon) and at the new Marina we were met by my bro-in-law and his wife (she of the green hair ! --- though it now has purple, pink and turquoise mixed in too) and two old friends.

We boarded a little boat and had a cruise down the Orwell River past all the little villages and under the Orwell Bridge (a real Suffolk landmark) and down into the Felixstowe and Harwich Docks. It was really lovely --- lovely surprise, lovely weather, lovely company and, for a few short hours, I could pretend that I could do this sort of thing anytime. I love to be near the water ---rivers, sea, lakes --- and it's something I miss most of all since I was ill so this was a real treat

These two old hulks have been resting near the bridge for 7 years. I teased my friend who was with us: we're exactly the same age (birthdays two days apart) and he's not always in the best of health. I said these boats were the two of us waiting for rescue.




Passing under the Orwell Bridge

......................and seeing it from a distance



For some reason I love lightships and lighthouses but this one is really special.

It served time as one of the Radio Carolines moored off the Essex Coast.

Happy memories of listening to the Pirate Radio stations when I was a child.

Sometimes don't you just wish you could sail away ?

I'd choose this to sail away on

Roxy Music - All I Want Is You - TOTP

Woke up this morning to hear this playing on the radio. I'd forgotten how brilliant early Roxy is. They were the coolest thing when I was in the 6th Form.

Enjoy !

Sports B****y Day

For the whole of my time at school, sport and P.E. were the bane of my life ---- because I was absolutely dreadful at it. I was unco-ordinated, self-conscious, uninterested and, much 0f the time, terrified: terrified of the humiliation, shame, teasing.

One of the most terrifying days in the school sports calendar was Sports Day. Here was the chance for all my inadequacies to be highlighted in front of all my peers, teachers and colleagues' parents. Here was the opportunity to turn up the heat of competition and thrusting need to be first when I hated all competition (even in the areas of schooling where I was good).

35 years later and nothing has changed. I still hate sport, hate competition and dread the time when I might be asked to perform any sort of physical task infront of others; though the M.E. is now the perfect excuse to decline any such invitation ---hurrah ! I've found a positive attribute of having M.E.. I claim my £5 (ha, bloody ha)

35 years later my daughter is also 'rubbish' (as is the current vernacular) at sports and apporoaches it with the same dread and fear. Unfortunately, since a change of Headteacher at her school, sport has become very important since 'Mrs K.' loves all sport and especially hockey. She has adopted the modern approach of making everyone feel included, shuns and abhors teasing and comparisons of physical ability, but lets slip her true colours when it comes to Sports Day which must take place at all costs.

This cheery annual event was to have taken place last Friday. There have been many hours of placating, soothing and empathy in this house for nearly 3 weeks as we have tried to comfort our daughter. Secretly she must have been doing rain dances and chanting special rain magic in her bedroom because by the fateful day it had rained so much that the school playing field was water logged and ducks were actually swimming on its surface.

We thought we were saved. No such luck. A dry weekend has increased the possibility that the 'alternative day' may make Sports Day (Plan B) a viable option: ' Unless there is Heavy Rain this afternoon Sports Day will take place staring at 1 p.m. ' declares a notice outside the gates this morning ..........and so my poor daughter has to dawdle into school, the very picture of reluctance and fear, trailing her yellow outfit behind her.

I appreciate that it must be lovely to be good at sport. In my next life I'd appreciate it if The Divine One could spill even a little soupcon of physical co-ordination and ability in my mixing bowl, but why oh why do sporty people have to be so bloody passionate and why do those of us who are no good at it have to feel so ashamed and made to parade our lack of ability to a crowd. After all if I was dysliexic would it not be seen as unkind to force me to take part in a public spelling bee ? If I was completely tone deaf, would it not be seen as cruel to make me take part in the school's performance of Carmen ? If I could not draw a straight line, would you make me take part in a public display of 'Works by Cusp' ? ---- I think not. So why make me and my daughter and all the other unfortunate little souls who cannot run fast, cannot kick a ball, cannot swim etc etc display their lack of ability in front of everyone who knows them once every year, come hell or high water ?!

Answers on a postcard to Cusp please. Your prize of a signed football by all the team members of Ipswich Football Club, plus life membership to the gym of your choice will be posted to the lucky winner asap. :-)