New Sock Monkey litter

Been very busy making this latest litter of sockee monkey for a Xmas Bazaar. There are four monkeys and one sock 'critter'. Actually he started off as a monkey too but his legs turned out too short and he looked very peculiar so he had to be re-worked and turned into something else. That's strictly 'hush-hush', so please don't tell anyone

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

This one has an embroidered mouth and a starry body

Here's the critter. I think he's probably called Ronnie (don't know why but I thought I heard him whisper his name to me ).. He's quite funky....got a little goatee and a fringed tongue

This one's very surprised. Think I might have accidentally jabbed him with a needle in a sensitive spot

Aaaaargh ! This one's my favourite really. I've been saving this sock for ages. He's a sort of nice pale green with an embroidered mouth, a felted heart and a curious expression

Aha. A punky rebellious monkey. The black stripes are shiny and have little tufty bits and the pink mouth is sort of tasselled

Rant Over !!!! On with the Motley. Dreadful Songs No. 5: Lena Zavaroni Sings 'Swinging on a Star'

Well I got that lot off my chest yesterday didn't I ?.... and now it's back to 'normal' so I thought I should give you all a treat....of sorts.

Now, strictly speaking dear reader, I don't think this is, per se, a dreadful song. I adore the 60s version by Big Dee Irwin and Little Eva BUT ...and it is a big BUT..this version by Lena Zavaroni is the absolute pits...and it also epitomises everything I detest about child perfomers. Poor little devils. They may love to sing but I always wish that for their own sake and ours they would keep their love of singing to the family fireside and taunt their grannies and aunts rather than us, the public. I particularly detest children who sing like Big Mama Thornton or George Melly.

This clip that I found is doubly nauseous since it will also remind the more 'mature' U.K. reader of a nightmare in their televisual childhood: 'Junior Showtime'.

I had forgotten quite how queasy that show was but I DO rememeber that even at a tender age, if I even caught a glimpse I was ready to heave.

Poor Lena. I may joke but that 'Big Time' in Showbiz, helped by Uncle Hughie did for her. Wrenched from a small Scottish village and a home near or above a chippie, she was thrust into the limelight, staying with a chaperone/manager Up the Smoke, packed off to Stage School with all the other shreakers and perished by the mighty sword that is anorexia. A horrible way to go and a waste. I genuinely feel for the poor little soul. She was so lost.....

Despair and anger

Sometimes I despair of humankind and how we deal with each other and look out for each other. It's always been the same. I've always felt like this --- even as a child. Now I'm a 'grown up' my despair has broadened when I see how we attempt to care for each other through the various services that we have set up as a society --- the NHS, Social Services, Education, Mental Health, Crime and Policing. I despair, not because I think the people 'on the ground' --- who do the actual face-to-face work, are inept but because all the well meaning procedures, paperwork and planning gets in the way of proper, responsive, person-to-person caring.

In the last few days there have been incredible, painful, stories about the attempts of local and national services to provide care for vulnerable children. They have been found severely lacking (an understatement). If common sense had been allowed to prevail a child might be alive today and being cared for by people who are capable of such love and nurturing

In the last few days I have met a friend who's mother has terminal cancer. My friend is beside herself because she is bringing up two children alone and lives 40 miles from her mother. She has tried and tried to access services to support her mother as she dies and found no help at all -- not from Social Services, not from the GP, not from Macmillan. No one seems interested in offering this dying woman the support she needs just in terms of personal care and help with the domestic routine. Apparently her mother doesn't fit into the right boxes. She slips between the 'safety net' of Services. Last week my friend and her brother were so desperate that they resorted to taking their mother to Casualty and begging for help. None was forthcoming.

When my own father was declining into that troubled ocean called Alzheimer's he only got some of the help he needed because I had worked within such Services and knew where to go, who to ask. He only got other help because my partner works in a similar area of work and knows how to use the system. When my mother was dying of cancer she only got what she needed because my partner and I worked tirelessly and doggedly to get her the help she needed. We begged and harassed and became a bloody nuisance until people responded. It shouldn't have to be like that.

In the last few days, the parent of a child in one of my children's class has been convicted. That child's family live on the 'wrong side of town'. They are a loving family but vulnerable -- very vulnerable. They were always vulnerable ---- even before this latest event. They are not bad people. They are troubled, unwell, uneducated, lost. The parent who is now left alone is incapable of managing alone for a whole variety of reasons. The Court made it clear that imprisonment would make things worse for the family but they convicted anyway and now they have moved that convicted parent to an Institution 60 miles away to a place where access via public transport is very difficult. There appears to be no support from Social Services and none from the mental health team. If appropriate support had been put in place before the 'incident' occurred that parent may never have reached a point where they would be involved in a criminal action. The family and the extended family is in disarray. They are falling apart and everyone knows about the whole sorry business because it was reported in detail with addresses and names in the local paper.

In the last few days our elderly neighbour fell and broke his pelvis. He had been having terrible pains in his spine and other joints but our doctor (for we share the same GP) had decided these were just to do with 'old age' and declined to do any tests. It now turns out our neighbour has osteoporosis which explains his pain prior to the fall and also explains, in part, why the break was so severe. Our GP could have investigated the neighbour's pain more conscientiously. He could have prescribed medication to prevent further deterioration (this has been going on for 3 years) but he declined to do so. There wasn't time and it's easier to put everything down to old age. If the GP had known about the osteoporosis he could have put in various aids about the house so my neighbour was less prone to falling...but he didn't. Now the neighbour's in hospital and the nursing staff are regularly forgetting to give him/help him with his hearing aid and so have resorted to shouting at him or getting cross when he doesn't seem to respond to their questions or requests. They've been telling him he'll have to wait when he needs the lavatory. They are overworked and understaffed. So far he has had two 'accidents' and is ashamed and embarrassed. It's nothing new. When I worked in a hospital for people with learning disabilities over 25 years ago it was well known that a certain member of staff would deliberately leave one old lady in her wheelchair right near the entrance to the lavatory but pretend to not hear her cries for help in getting to the loo.....so she would wet herself and he could come over and shout at her. He could have the power and enjoy her humiliation. Everyone knew. We just needed him to be caught....and he was......just desserts. But where does that kind of cruelty come from ?

I have no answers for all this. I only feel despair and anger: despair and anger at individuals within these Services who seem either to work without compassion and should never have been employed or are made to work to strict guidelines and procedures which don't allow for or recognize common sense and gut feeling.

Procedures, procedures....always the paperwork, the forms, the meetings and the middle management --- never the common sense. There are people at the 'coalface' who see the families, see the children, see the old people and their despair and pain and needs and KNOW how to respond because the relationship is based upon one human being to another without the wall of bureaucracy and the constant reflection back to budgets, timescales, productivity, certificates and more bits of bloody paper. Most people in the 'caring professions' are there because, by nature, they care. They are blessed with an innate ability to respond to others' needs and know what they have to do. If their voice was heard and they were allowed to act upon their common sense, I am convinced that lives would be happier, that lives could even be saved.

Autumn Walk

Dreadful Songs No. 4: All Kinds of Everything, Dana. Eurovision 1970 Ireland

Well....continuing a certain theme, here's another wimpy Irish warbler.

Now don't get me wrong. There are plenty of Irish people and aspects of Irish culture that I like BUT I cannot stand simpering, mawkish niceness from any race or culture and this has simpering mawkish sentimentality by the bucketful.

When this delightful ditty surfaced I was but a strippling...and even then I could have vomited on the spot every time I heard it or saw Dana's nicey, nicey smile and that viciously 'nice' hair slide. Don't you just long for her to break out into a sort of Heavy Metal version and tear off that dreadful frock to reveal ripped jeans and a lack T shirt with a Death's Head on it ? For God's sake woman, chill out !

What's amazing is that beneath the sugary exterior there must have been more mettle than first appeared because in later life she ran for President of Ireland [mind you there have been far greater dolts who've stood for Presidency in 'other countries' and won...even if their time is drawing to a close ;0) } Later she was an MEP.

Anyway I nominate this beautiful song as Dreadful Song No.4 and invite you to partake of a strong anti-emetic before listening or, if you are in a frail state at the moment, do feel free to postpone this life changing experience until you are feeling a little stronger.

Sláinte !

What I did on my holidays

Well the half term hols are over and I'm sitting here trying to re-group my thoughts and faculties

It was a good week

We went en famille for a brief sojourn by the seaside. I rather overstretched myself and had a little 'dip' midweek but it was good to be somewhere else, involved in everything and pretend, for just a little while, that I was like other parents.
The weather was bright, sparkling and bitter cold but that didn't matter because we were having new experiences

Later in the week it was Halloween of course and the children and their friends spent the whole day making a revolting feely box as part of their trick or treat. We dressed up and 'hit the village', gleaning a ton of sweeties.

I made a lovely topical dessert --- Bloody Eye Pie.

Here's the recipe should you wish to replicate:

Take 8 digestive biscuits and crush with all the force that a PWME, mid half term holiday can muster (you may need help)

Combine crushed biccies with a large tablespoon of butter and as much brown sugar as children will tolerate in a pan over a low flame, until the butter has melted and combined with bics and sugar

Press the mixture into a shallow bowl and leave to cool. Meanwhile, search out your eyeballs. At this point in the school break you may feel they have already been burned out but persevere dear reader and attempt to wend your way to the local sweetie shop where you might purchase a good facsimile hand crafted from a ton of sugar, pigs gelatine and a shed load of additives and colouring. Once home place an eyeball at bottom of bowl

Make up a pineapple jelly with a little too much water so it will set all sloppy. Don't forget to add green food colouring in order to reach the required amount of unnatural ingredients in whole (you could use lime jelly but this would be cheating).

Retire to bed for a sleep of at least 2 hours. Upon rising, make a cup of tea and drink whilst watching trash TV. You need all your faculties and skills for the last lap of culinary delight.

Mash jelly and place over eye in bowl and all over rest of biscuit case. Decorate eye with black icing so that it has lashes, styes and spiders on edge of bowl.

Take a bottle of strawberry syrup and squeeze liberally all over dish so that it resembles oozing blood. Serve with a side dish of Phlegm and worm sauce (cream cheese with icing sugar, lime green colouring and cold cooked spaghetti)

Nigella...eat your heart (or eyes) out

DREADFUL SONG No.3: Enya - Orinoco Flow

Well, back from a short break. More of that later.... but for now I wanted to continue with my Dreadful Songs list.

Now, I know that for many people Enya can do no wrong but for me she can do no right with her dreadful, wimpy, pseudo-celtic drivvle...wibbling on lie a bad cold.

In the 80s this old tripe was everywhere. There seemed to be a taste for 'romantic' soft and especially celtic stuff. Maybe it was as a kind of antidote to all the desperate greed and consumption of the other 80s music: something calm and soothing -- except I never found this woman's work either of those things. I wanted to run around an Irish bog until I found herand apply gaffer tape to her mouth to shut her up.

At that point in time, you could bet your bottom dollar that if you went into a gift shop or some other emporium selling 'natural' stuff -- any natural stuff -- that this would be droning on in the background against the chinkedy chink of wind chimes and little models of dragons and wizards. Urghhhh!

All it ever was and is to me is some talentless woman dressed up in a bit of crushed velour looking miserable in a damp castle and warbling on about imagined fairytales and nature against a backing of synthesisers and multi tracking.

Can you tell I don't like her ;0) ?

DREADFUL SONG No. 2: Black Lace - Agadoo

Well, feeling a bit lonely over here.

Where have you all gone ;0(

Perhaps I've scared everyone away with my 'torture music'

Anyways, we're off on hols for a short break now so I thought I'd leave you with No.2 in my series of Dreadful Songs. It's 'Agadoo', you lucky folk -- the stalwart of all dreadful parties, cheap holidays and a towsled remnant of the 80s: all that lovely spikey gelled hair and leather trousers. It looked naff then and it looks naff now. Personally I've never heard this ditty all the way through because as soon as it begins I'm off --- to the loo, to another channel, to Venezuela --- anywhere that's not in listening distance but you may enjoy it ....or not.

See you all soon

Disabled or sick ?

Yesterday my attention was been drawn to an excellent article in the Guardian about one person's attempt to return to work after having made a partial recovery from the depths of M.E. In the article, Melissa Viney sets out the difficulties of trying to move back into the working world when one has a fluctuating chronic illness like M.E.

For a long time now, people who receive Incapacity Benefit were in a sticky position if they began to think about a gradual return to work because, as Melissa says

'....IB has been a rigid, all-or-nothing system; you can work, or you can't. It takes no notice of the many chronic and fluctuating conditions .....'

From next week (October 27th) a new system, ESA (Employment and Support Allowance), will begin. This will divide claimants into those who are deemed able to do some work and a much smaller group who are deemed unable to work and are therefore excused and given a higher rate of benefit. Since the Government aims to cut the number of claimants by 20,000 p.a. you can imagine that there will be an onus on DWP Assessors (who are woefully misinformed about conditions like M.E) to take heed of the new, more stringent criteria by which people are judged to be capable of work and try to get as many people as possible in the 'able to work' category. It will remain an all or nothing system: a system which fails to address the needs of people with fluctuating conditions and which makes it almost impossible for such people to return to work with any confidence or feeling of security. If their health begins to falter and they have to give up work and have a lot of time off work, how quickly will their benefits kick in and provide a much needed safety net in terms of finance and confidence ?

Apart from clearly setting out her story and imminent changes in the benefits system, Melissa's article strikes a chord because she discusses the issue of the difference between disability and sickness. It is something I have struggled with ever since diagnosis. I have spent my life around disabled people and have always appeared to be able bodied, healthy, resilient. In fact I have been living with M.E. for over 30 years and have often felt so unwell that I have not known how to get through a working day. I have had blocks of time off work (two weeks here, one month there, three months here, three days there). I've ducked and dived my way through College, University, career because I felt there was nothing really wrong with me that a few days rest wouldn't cure --- even when a different reality was staring me in the face: it isn't normal to spend every day feeling ill and struggling to get through ordinary routines at work and home but I was always told by doctors that I was 'just unwell.'

In my last job I worked for a charity which was developed and run, in part, by disabled people: people who used wheelchairs, people who had had strokes, were deaf, blind and so on. How could I compare myself to them ? They were disabled. I just felt poorly. Some of those people would be judged unable to work by the DWP --- though they did work jolly hard. Some were paid and some worked voluntarily. Even so there was a recognition that their lives were impaired by their disability and they were supported through additional benefits, support in terms of better access to buildings and information.

I felt then, before diagnosis, and even now, that none of that kind of support or understanding was available to me. I still have the sense that I am 'just unwell 'and with that an implication that there is a possibility that I can get better, back to normal. I have the sense that, somehow, in the pecking order, I am perceived by many to be more fortunate than someone who is seen as disabled. In some ways I am.

I can walk unaided mainly.

I can hear, see, speak.

I have a normal level of understanding and intellectual ability.

But all these aspects of my self are impaired in some way and every day, every moment is a struggle.

Nobody seems to really understand that there are days when, if I can get out at all,

I too need to go up the ramp instead of the steps,

I too need noise levels reduced so I can concentrate,

I too need the understanding that I have difficulties in terms of concentration and memory,

I too need a special diet and reduced chemical levels so I don't feel dizzy, sick , confused.

I too need reduced and flexible hours because I cannot work a full day and I also need a situation where I can phone in and say,'I just can't get into work today. I don't feel up to it and if I force myself today it will have repercussions and you probably won't see me for the next week because I'll need even longer to recover.'

I'm sick of feeling apologetic and always having to explain or excuse myself.

So who has a life that is more 'unfortunate', more limited ? Who is more able, who should have more determination to get out there and contribute instead of taking advantage of State handouts ? It's certainly not a competition and there's no point in trying to determine who is worst off and who deserves a sympathy vote. In fact it's impossible and pointless to judge because any kind of impairment, illness or disability will be subject to permutation, variability and by the character of the person it inhabits. There is no black and white.

What there is, as in so many aspects of life, are many shades of grey and a desperate need for recognition of the fact that most people who receive a State Benefit because of illness or disability, do so reluctantly and with a degree of apology and embarrassment. They would dearly love to earn that money and offer something in return when they can ...and that is the point ---when they can.

However, in order for them to do so, there has to be a much deeper level of understanding of people's fallibility in the face of chronic illness, a knowledge that life with e.g. M.E. can feel very fragile and insecure and that, if there is any hope for the likes of us (PWME) returning to the working world and contributing our undoubted skills, employers and their other employees have to understand that chronic illness deserves as much respect as disability.

Bella's Adventure

Been experimenting lately with trying to make other animals with socks. This is the first successful creature --- a pussy cat called Bella. She's quite posh with her flowery nose, gold whiskers, necklace and little hearts all round her middle.

She's a cuddly old thing and needs lots of comfort but also has a lot of love to give too. Sadly she's lost her owner and needs to find a new one but I know just the person who'll be right for Bella: they'll be right for each other I hope. So, later this morning I'm going down to the Post Office with a big brown parcel and I'm going to send Bella to pastures new.

Wish Bella and her new owner luck. I hope they're going to be very happy together.

DREADFUL SONGS: Number One:Chirpy Chirpy Cheep Cheep Middle of the Road 1971

Listening to the radio this morning, I heard a song I hadn't heard for years and thought how absolutely frightful it was.

It wasn't this one (I'll save that for another day) but it has set me on a journey of trying to discover all my least favourite (AKA dreadful) songs.

I love to share --- so here is the first song in my selection for your delectation and delight.

These gems are presented for you at random and not in any particular order of de-merit.

Cat and Mouse

Still no word from Icesave so we bumble on and let Gordon do the work and pray.

In the meantime life geos on and it's Parents' Evening again and time to make soemthing for the cake stall to raise funds for the new library.

Out shopping for cake ingredients I spotted a bag of white chocolate mice and was inspired to make thsi Cat and Mouse Cake.

The Flying Lizards - Money

Money: my least favourite subject

Originally this was going to be a much longer post about MONEY, being something we all need but which is the root of all evil.

Originally this was going to be about how the consumption and greed and ideology of the Thatcher Years and the Thatcher Generation has come home to roost ....... how

'I want it and I want it now'

just doesn't work....

Originally this was going to be a post about how we had some savings in two different banks who have both now been taken over or gone bust. Whatever made us think of depositing akkers with a bank based in a country more used to dealing with cod ?!

Originally this was going to be a post about how the rich STILL stay rich or get richer and the poor are kept in their place

but then YouTube threw a wobbly and I have had to make it brief.

So here's to us all...the little people, who work and toil, scrimp and save and try to get by. As I see it (and remember I am a child of the 60s) people and caring and nurturing will never be seen as more important than money


Originally the video above was going to be tied in with these words but YouTube and Blogger just won't play nicely this morning so watch the video and listen to the words, remove the irony from the Flying Lizards' 1979, postmodern, deconstructionist presentation and you'll pick up the ring of cash registers, the hollers of the traders, the weeping of the small investor and the shrill and hollow laughter of all the 'men at the top' who have managed to build a nice fat raft of gold whilst the rest of us try to hang onto a stray banknote as it floats past on a stormy sea.

Blog of Integrity Award

Not many new words up here of late. Still sorting through and sorting out after last week --- the sorting is going through the spaces in my head and in the spaces of where I live.

In the meantime I have continued to peruse and comment upon other people's blogs and there's some really interesting stuff about at the moment. Seahorse has a really interesting post about how important music is in our lives. Michelle and Donimo both have posts about continuing to try even when you feel like giving up. Dear Signs appears to be obsessed with her birthday and food at the moment ;0) --- if it isn't delectable gluten free orange cake, it's salty liquorice ! and Rachel , Nasim, Amanda and Azirca, show PWME how to be persistent and dogged, cling to their creativity and embrace those opportunities that present themselves. Kahless, as ever, presents all her struggles with amazing honesty. Never have I known someone as able in telling about life as it really can be, in all its messiness, and yet still stand proud and have so much respect from other people because of such naked honesty and truth.

Now to me there's a real common thread to all these blogs and their creators because as well as being creative, informative and interesting they have all demonstrated real integrity. They all deal with their lives and their various difficulties with honesty and a kind of sound dependability...SO I have created a new Blog Award: The Blog of Integrity. There have been doubts about whether this should be called the Blog with Integrity and I expect Nasim and Signs coudld put me right about that, but, in the meantime, just know that the award is made in a spirit of real appreciation to all the above .

Done and dusted. Onward and upward

Well Mohammed has been to the mountain and returned from whence he came. Two and a half hours of going through every tiny detail of my life from when I was 3.....50 odd years; scraping about under my carapace until I feel like a crab shell in the dustbin of seafood store. Hope he got what he wanted and, no doubt, though he was a very nice fellow he will now go back and write what he would have written even if he'd never met me face to face i.e. that if I just have the right sort of CBT and the right sort of GET then I can be reinvigorated ready to resume my career and pay my own bloody pension premiums. We shall see. Thankfully there are some trick-cyclists who recognise that M.E. is not a psychiatric disorder, or depression or all about fatigue and I thank Dr Speedy and good old Nasim for pointing me in the direction of this psychiatric sage. Trouble is she (the sage trickie) is in Canada and that's a bl**dy long way for someone with M.E. who finds it mega hard to even get to Ipswich U.K. Never mind. All part Of life's rich tapestry....cliche, cliche, cliche.............

On a much lighter and more positive note I would also direct your esteemed attention to a very uplifting project. The lovely Kirrily Anderson in (I think,) Australia has brought together a whole bunch of creative types who also happen to have M.E. and gathered their work into a very well-produced online magazine/book. Take a look at Creativeforasecond and you can download a free copy for browsing or buy a hard copy. Great positive stuff and more of what we PWME need.

Past Present Future

Well what can I say ? It's been a long time and, in the small way of a life with M.E., quite a lot has happened.
There were trips out and visits from relatives during the school hols and at the end a lovely short break right by the seaside. I know how much the seaside means to me but it wasn't until we were finally there that I realised just how much I'd missed the sounds and smells and sights of the shoreline.
Now we're back to the routine of school and work and domestic duties and the holiday is a lovely memory. I feel slightly different and more in tune because during my break away from you all I was also coming off the low dose of SSRI I have been taking for the last 7 years. Such drugs are often presctribed for PWME and, initially, during the shock of becoming so ill and losing so much they were useful. Over the last 3 years I've pleaded with my GP to support me in coming off --- but to no avai. Finally I asserted myself and spent the summer holidays gradually tapering the dose. Now I'm finally free of the chemicals and life is more real -- the good, the bad, the ups and downs but I feel more connected.
Next week I have the visit from the Insurance psychiatrist to assess whether or not I am geniuinely physically unwell and unable to work or whether I have a condition that could be turned around by CBT and Graded Exercise so I can return to work and pay my own pension premiuims. Mmmmmm.....wonder what he'll decide ? Answers on a postcard please.
I bet I know already. Sadly I have to go through this charade or they've threatened to leave me with no pension at all and cut me off.
Lastly, the summer was made more enjoyable by the publication of Nasim Jaffry's book 'The State of Me' A brilliant read that can only do good in terms of letting to worold know how it os to live with M.E. but in the most charming, involving and humorous way possible.

There will be a short intermission

...and lets hope this video IS still available. Like I said, can't get the staff !

There will be a short intermission

Normal broadcasts will resume in September

*If you visited here recntly and saw 8 similar posts it is because YouTube and Blogger have had some serious issues for the past week: no transfer at all and then they transfer eight videos all at once. Can't get the staff !!!!!

Keeping up

So what have I been up to since last we met, you ask ? Lazing in the sun, sipping juleps and Pimms ? No actually. I've been keeping up. In actual fact I have been keeping a secret from you because I have been part of a study made by the MUS (Medically Unexplained Symptoms) Dept. of my local hospital. I shouldn't really tell you more and certainly not show you some of the Report but as it is between us and some of the report is about me, well, .....why not.....just between friends

'Keeping up' is a distinct behavioural mode in the subculture of MEwhirled. This sub strata of Western society and culture is composed of a small and ill defined group of women, men and children who suffer with a condition whereby they can see a world (what we usually call 'normal life' or the 'primary world') moving in front of them and have a desperate desire to join in but who also feel that they are moving within a different time frame with a different set of rules. They feel that they are moving at a slower pace than the primary aworld and are unusually plagued with guilt, mood swings and a need to placate and please those in the primary world.

The behaviour known as 'keeping up' shows them enmeshed within a particular set of fine and gross motor movements which induce aches, muscle weakness and, occasionally a very nasty headache. They are, in effect, making feeble attempts to match the pace of those movements and tasks seen in the primary world (a futile exercise ). In doing so, they feel that they are being whirled round on an ever-faster carousel --- the primary world --- which rushes past as they try to keep up. This whirling effect has given rise to the aforementioned term 'MEWhirled'.

Such intense behaviour can lead to subjects exhibiting a certain irritability as their futile behaviour continues and frustrates them. Their large intestine and bowels may manifest this general irritable demeanour through constipation, diarrhoea, vomiting, flatulence and an intolerance to certain foods --especially the really nice foods such as bread, cakes, chocolate and alcohol.

In recent studies it has been shown that 'keeping up' is particularly common in people with ME who are parents and carers of young children. It also seems to reach a peak at particular times of year -- especially within the hottest summer months and the Xmas period. These two peaks may overlap and this has led experts to posit the theory that 'keeping up' is linked to full-time parental responsibility during school holidays. In particular, the full time responsibility is also linked to a phenomenon experienced by many parents in the general population. This phenomenon is called 'keepingthelittledearsamusedandoutoftroublewiththeminimumoffussandargumanets.'

So you see I have been 'keeping up' and rather than being smething I just do or feel I do it's all legit because now the local MUS Dept has made a study and written a report about it so it must be kosher.

It's not all bad. A lot of it as been enjoyable and fun, if a little tiring.

Since the beginning of last week we have taken part in:

• Sports Day


• Achievement Day: this was 'made' for me by my son playing the recorder for the first time and a little boy in Year 5 who looks a lot younger than his age. He just about managed to sing 'Whistle a Happy Tune' through floods of tears and snot induced by terror at the thougt of singing in front of an audience. 'Whenever gasp I feel sniff afraid, slllurrrrp, gag, snot, I keep my head erect, sniff sniff.... etc)


• End of term school (s) disco (s)


• End of term Youth Club disco


• Buying new sandals


• The local 'French Market'; a jolly and colourful experience but one which leads to a certain sense of disillusionment since many of the articles for sale are wildly overpriced, not french and are served by people who have never crossed La Manche from this side. Still it is tres amusant to see saucisson sec being flogged from a stall in Stowmarket High Street and to hear some of the real french stall holders with their lovely sing-song english. 'Mercimadame'
  
• Making a new skirt for daughter


• Helping son paint old bike and get new saddle so he can flog the old bike and get money for a NOW 70 CD from which he wishes to play Dizzee Rascal at full pelt on the car stereo
  
• Helping daughter make cake


• Going on train to nearest big town (only the second time in 7 years) and then sitting on station platform at nearest big town, spending exorbitant amount on National Express fare (all part of the experience --home made sarnies just don't 'do it'), and watching son drawing trains, taking photos of trains and noting down times of arrival and departure before returning to home town (15 minutes down the line)

• Village fete with dog show where our neighbours' dog won' Dog with the Biggest Grin'. We didn't take Tiffin as it was too hot and he's really struggling in the heat. I also bought 5 foxgloves and 3 heliotropes for £1.40

• Calling ambulance and helping elderly neighbour and who had fallen and broken his hip and whose wife was in real shock. Process took so long and happened at time of day when I would usually be asleep so that, at one point, I thought I might 'flake' and the ambulance would have to accommodate both of us ;0)

Now to you other mortals in the 'primary world', this little list mapping out some of the activites with which we have been involved over 9 days, might not seem a lot. It is just ordinary fodder for the parents of children on school hols .....but for PWME it takes a lot of juggling and patience and organisation and love to get through. It also takes the children a lot of patience, maturity and understanding to have a parent who cannot keep on going ad infinitum without having a 1-2 hour sleep in the middle of the day. My children are such children and I love them all the more for it.

So far we're doing OK and I'm trying my best to rest when I can and grab little bits of 'me time' --- like now.

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I wish all peoples with children who are on holiday a calm and pleasant few weeks.

May you never argue, lose your list of possible activities and outings (you have got such a list haven't you...Woman's Own has been recommending it since about 1959 I believe), run out of easy recipes for amusement or tea.

May you never be bothered by thunder flies which tickle and irritate and get inside next door's burglar alarm and set it off so that it alarms all and sundry and rings for what seems like eternity.

May you never lose your patience with CBBC's endless, endless, endless repeats of Tracey Beaker, Stupid, Best of Friends or Big Kids.

'It's too nice outside to be sitting in here watching that stuff. It isn't as if you haven't seen it a million times already. Go outside or go and find something more constructive to do please'

Can you tell I used to teach ?

I'd never 'keep up' now