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