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

Sunday prayers

Sunday saw us all at the local Smallholders show; a lovely few hours where we could see everyone else's chickens and produce and all manner of other livestock. There were sheep, llamas, turkeys, ducks, big dogs, little dogs, old dogs, puppy dogs and several other whippets for Tiff to sniff.

Owen the big pig sleeping in the sun

The show gets bigger and bigger each year. There were tents with eggs, honey, fruit, vegetables, flowers;

tents with crafts, woodturning, spinning, weaving, leather work, photography, old tools, old machinery.
The highlight for us was, and usually is, the agility show with the dogs. I'm always amazed at how much owners really do come to resemble their dogs ( no exception here either !) and how much the dogs seem to enjoy the fun and games and the tender humiliation of their owners ---- often a very enthusiastic middle aged, middling weighted person lumbering after a lightning speed Collie.

Even the other dogs enjoyed watching the dogs

Now I'm shattered, having been to our village church yesterday for the flower festival. More village life with lovely displays, the organist playing Sati and lots of old ladies shakily pouring milk into rows and rows of teacups, cutting sponges into wedges with the old urn steaming away in the background ---- bliss ! Tea and cake eaten within the shade of a church porch on a sunny afternoon with an old dog waiting for crumbs: he had his own tea on a paper plate too and a good finger full of coffee cake.

Today I shall bake a cake for Tuesday's Achievement Day at son's school and then rest up in the hope that I can make it through that event, Sports Day and then the next six weeks of school holidays

How does that old 60s Aretha song go ?.....'I say a little prayer.....'

Pretty shed

You may remember that my son recently had a shed delivered and assembled by Team Cusp Famille. Now, the shed has been put up alongside the hedge which borders our neighbour and means that, in part of their garden at least, they now see the back of a shed rather than a beautiful vista across the Cusp Estate ;0).

Our neighbours are an older couple. The wife is a wheelchair user so she can only just see across the top of the hedge and rarely gets to go out since her husband had to give up his driving license. We asked them about putting up the shed in case they didn't want to feel more hemmed in (though their garden is enormous and reaches another 100 metres past ours which is also quite big.) There were no objections but I promised that I would paint something on the back of the shed so that when O. comes out to her pond to feed her fish, at least she isn't just looking at 5 feet of black ship lap.

This week the couple have gone on holiday so whilst they've been away I've been nipping out in between the downpours and painting a lovely 'muriel' on the reverse of the shed.

I've always loved all the myths of the Green Man and the shed is situated under the apples trees where there is a blackbird's nest. This has been my inspiration.

I hope our neighbours like what I've painted. We'll have to wait and see

Why I hate pigeons by Cusp aged 51 and 11 months and why crazy people may not be as crazy as you think

For as long as I can remember I have hated pigeons. To me they are worse than rats and the very idea of walking across, e.g. Trafalgar Square, with the nasty disease-ridden vermin flapping about near me, or, worse still, feeding from my hand, fills me with revulsion.

Two days ago, as is the Cuspish way, I retired to the boudoir for the midday nap and left Tiffin snoozing peacefully on the sofa ---as is his way. After some 15 minutes there was an almighty crashing and banging. As I am still in Post-Shed recovery, I roused only a little and passed off the commotion as our slightly unhinged neighbour who is wont to paint his gutters all too frequently (neighbour's obsession # 302) which entails the leaning of ladders and much grunting and huffing.

Amongst his many other obsessions are:

rats;

birds fouling his car;

people who walk too close to the end of his garden;

all cats;

the milkman not leaving his bottles in the 'right place';

pressure-washing his patio;

our chickens;

our children;

next doors children;

hoovering loudly at 7 p.m. on a Sunday

...the list goes on and, funnily enough, one thing on the list as yet unmetioned, is his obsession with wood pigeons which roost in his trees and which he constantly scares away.

Often in the summer, one can be resting or chatting quietly in the garden only to be rudely awakened or wrested from intense conversation by the loudest clapping of hands and shouting from said neighbour in his attempts to scare away said pigeons -- away from his pond, from his patio, from his lawn, from the air and all surrounding space above and beyond his premises.

Anyway......I dismissed the noises which had roused me from my slumbers as yet another neighbourly prank and I drifted back to sleep.

Bangcrashbang ......like the sound of someone rattling a large stick around a box.

'What's that silly old s*d doing now ?'

'Let me go to SLEEP.... don't you KNOW there are people trying to sleep at 1 p.m. here. '

'Surely wanting to sleep in the middle of the day is normal. It is to me you daft old bu**er. Surely a midday nap is not too much to askkkkkkkkkkk......' zzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz...........

Bangcrashbang

There's that noise again

'Shut UP !!!!!!!'

zzzzzzzzzzzz....................

Tiffin comes thumpty-thump up the stairs and leaps on the bed, his nose in my face

.......this is serious...

I stagger downstairs, half awake and very, very grumpy. The living room door is ajar and I peer through the gap. All I can see is little bits of black stuff on the carpet

....there's nothing there,

'Daft dog......what's this all about ?'

and as I turn to go back upstairs my eye catches sight of something unusual ..... an eye looking back at me from the far end of the room. Not a human eye, not a canine eye but the blinky, winky, gimlet, glassy eye of a ghastly filthy wood pigeon who is dazed and confused and ......horrid.

The daft bird has fallen down the chimney and has brought with it a fine shower of soot and smuts and has been battering itself against the windows trying to escape. There are sooty wing prints all over the window frames, on the ceiling, against the glass. There is poop up the curtains, on the floor, on the sofa and I am parlayed with disgust. I cannot bear to enter the room and I pray that the bird will not fly through the other end of the living room into the kitchen.

The only way to reach the blessed bird is to walk past it (which I absolutely cannot do) or go out through the front door, round to the back of the house and enter through the back door, right through the kitchen and then into the living room and gingerly open the french doors so he can escape without me having to get too near to him

This is plan A.

Plan A fails. I had locked the back and front doors when I went for my nap and though I can get out of the front door with the key which is still inside, the back door key is also insidethe back door (so I can only reach it by going through the living room and past the offensive creature )and I do not have the spare with me so I cannot unlock it from outside (are you following this ?) viz I'm locked out of the back and have no shoes either.

Plan B must be put into operation:

Plan B: close the living room door, retreat to bed with dog (who is terrified) and wait an hour for partner to return with all keys and no fear of pigeons

Plan B is successful and pigeon is released by partner though even that is acheived with a certain griamce of horror.

We survey the damage ....which is considerable but not nearly as bad as it could have been.

We phone the insurance company who promise to come out the next day (which they did and the whole room is being cleaned ad restored on Monday, thank God)

Moral of the story: Pigeons are vile. Do not assume that all the apparent crazinesses of your crazy neighbour are as crazy as you first thought.

Next time I see a pigeon in MY garden or near my chimney pot I shall be clapping and shouting with my neighbour and louder than him !

Cakes, Fetes, Parents Evening and Sports Day

Here at Maison Cusp we are in the throes of end-of-term/end-of-year school 'jollies': Parents' evening, Achievement evening, Sports Day, End of term Disco, End of Youth Club Disco, Proms, Summer Residentials ....oh the list goes on and on. And you can double all those events because both children have all of them (near as damn it) and their schools are 15 miles apart so that makes for extra fun --- sitting at Sports Day all afternoon and then daughter quickly changing in car so we can drive to son's Achievement Evening for another two hours.

Now, don't get me wrong. I am genuinely interested in what our children have been doing and I love the fact that they are both doing well and are happy at school and their teachers say they have been a pleasure to teach. I'm proud of them and want them to have memories of their parents supporting them and being there and being involved with their schools and I want to know their teachers as much as I can BUT I do so wish that all this didn't have to come all at once. Every year the run up to the summer holidays is a head long rush of activity and later nights with children that are growing increasingly tired too. This is nothing to do with M.E. --well it is too --- but it's the same for all parents of kids at school.

In the meantime, Cusp has been silly. Son was desperate for a shed that he could use as a studio/den/refuge. Finally we relented on the proviso that he helped to assemble it and guess what we were all doing this past weekend ? : erecting a shed..... and it was l hands on deck so I joined in too. I am truly knackered with the screwing, painting etc. etc. and I have woken up feeling as if every bone and muscle is crushed but it was worth it to see his face and see how well he manages to get round his various disabilities to achieve what he wants. We both struggle in our own ways but both soldier on. Of course, being 13 and a half, there are the usual adolescent bumps -- storming off when it won't go right, waking up really late so Parents have done some work on the shed before he's even up but that goes with the territory and it just shows that, learning disability or not, he's the same as any other 13 year old which is great.

Now we have a few weeks grace whilst everything winds down and preparations must begin for the long 6 week break. Will we go away ? Will the M.E. be allowed to get in the way of travel plans and prevent escape ? Is the energy required to go on holiday worth the effort when often I spend a holiday in bed because the journey there has tired me so much ?

Watch this space !!!!!