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. :-)

Another Monkey

I made this monkey for one of my oldest, dearest friends. She's been a cook for neary 30 years. The monkey is called Suzette and she comes from Canada --funnily enough that's where my friend comes from too -- hence the maple leaf on Suzette's hat and pinny.

Suzette likes to make biscuits

Suzette likes to bake cakes

..and after all that work she likes to rest in trees........

Suzette was sent to my friend with her own little introductory booklet, so my pal has a bit of background on her new foster monkey

Coming to terms with Disability

Now this is a bit naughty because, in a way, I'm cutting and pasting from someone else's blog (naughty, naughty....slapped wrist !...no, not slapped wrist, ....sorry everyone, very un-PC...too physical...I meant 'serious verbal admonishment).

Anyway up...

Seahorse over at The Beauty Offensive has been discussing her journey in coming to accept her disability, her new status as 'a disabled person' and the acceptance (or otherwise) of this status by those around her.

Reading her post I was moved to post my own comment and this, dear reader, is the power of blogging, because it was only in the writing of the comment that my own rather muddled and convoluted thoughts on the subject presented themselves to me on the screen.

I must admit I was rather pleased to have my ideas and thoughts presented so clearly to me and, having read Seahorse's response I felt I wanted to re-present them on my own blog.
So here they are, with apologies to Seahorse ( who is a very perceptive and lyrical personage).

You open up a really important issue.

Having worked with people with a disability for years, then having a son with a disability and now having become unwell and starting to realise that I am disabled, my life has been(thus far) an unfurling of understanding.

I’ve known about the social model (of disability) for years but it’s a different bucket of eels when you begin to think it might apply to you. I think we all have a degree of misunderstanding about others’ conditions and issues. What counts is acknowledging that and being prepared to listen to others and hear our own prejudices too.

My own difficulties are hidden. No one would know the difficulties I have from day to day, moment to moment and how hard I try and have tried to ‘pass’ as ‘OK’. (Now I have reached a stage where I don’t know why I tried to hide it ). I even did that when I worked for a charity that was all about promoting the rights of disabled people. Many other employees used wheelchairs or were deaf or visually impaired. Somehow, I felt that because I didn’t need those things I wasn’t really ill, wasn’t really disabled --- didn’t have enough points to join the Club (as one quite well known disabled artist said to me only partially in jest ‘I can call myself a crip because I am one. You can’t call me that because you’re not’!). It’s all about perception --- by yourself about how and who you are and by others about what they regard as
‘disabled’.

One more little story told to me by a friend who has a son who is autistic:

She went to a party with her three children, one of whom is autistic. He has only just reached the stage where he can tolerate such social occasions and where his mother feels secure enough to take him.

Shortly after they arrived she noticed a young woman staring and staring at her autistic son. (He has quite unusual mannerisms which can bring unwarranted attention.) My friend tried to ignore the stares and brush it off as the woman’s ignorance or her own paranoia. The young woman still stared and stared.

Finally my friend could bare it no longer and addressed the young woman directly:

‘Will you please stop staring at my son. He has a disability. He is autistic.’

Over her shoulder an older woman’s (the girl’s mother’s) voice said,

‘So is she’

Yesterday, another friend was asking me about this whole subject and where I thought I was with it all now --- after 7 years at home. If it wasn't for Seahorse I would never have been able to explain myself so succinctly, so thank you Seahorse for bringing the whole business to mind.

The Who - My Generation (Marquee Club 1967)

Been another busy few days with me trying to keep up: finishing another project and helping at a Fete.

Last night I stayed up too late and watched The Who at Glastonbury. I'm always hesitant to watch older bands like this because I fear now that they are increasing in years their powers will have diminished. I should not have been so sceptical in this case. The energy and passion is still there and they were fantastic.

Even though I was only 9 or 10 when this came out, I still identified with the lyrics and loved The Who.

You gotta hand it to them --- they've still got it and thank God two of them haven't 'died before they get old'. Fab ! Gear !

Painting

With judicious and careful pacing (see the need for same in the video link below !) I have managed to finally finish the painting commissioned by my brother-in-law. It's the first painting I've finished in a long time. I'm afraid it's not a very good photograph.

I was left to paint whatever I liked so I had to come up with something that summed them up as a couple and a family(this painting is to celebrate their 20th Wedding Anniversary). For all sorts of reasons I have based it on medieval and early Tudor paintings.

In case you're wondering, I do not have a screw loose and nor am I colour blind. My bro-in-law's wife's hair is green and has been for as long as I can remember and the bird on his shoulder is his parrot --except it is based on an image of a parrot in a medieval Bestiary --- so it looks rather extraordinary.

Have a look at this.........

Greenwords has posted a link to an excellent video made by an Australian TV show about ME.

Take a look. If only UK television would make such an unbiased and thorough piece

Go here

Loneliness of the long distance 'only'

Yesterday I received a letter from the wife of my father's work partner . My Dad died nearly 8 years ago although it seems like last week. I haven't seen his partner since my mother's funeral 3 years ago and yet the letter brought a sudden rush of unexpected sadness.

In many ways this feeling is inexplicable. I wasn't especially close to L (Dad's colleague) though I do have happy memories of big Xmas parties at his house with a big family gathering and being made to feel as if I was a part of it. As an only child, this annual celebration was a lovely thing for me and I really enjoyed seeing my parents enjoying themselves at such an occasion. We were a small, tight family unit (as families of only children often are) and such a crowd of people having fun in a domestic setting was a rare experience for me. My mother was also an only child too, with few other relatives, so our extended family was small anyway.

I suppose the sadness is about being an only child really. After the initial feeling, my next thought was 'I can't tell Mum & Dad'. It felt weird that they weren't there to share the news. Apart from working together for maybe 10 years, my father and L had been in the same 'work circles' for years, so my parents would have been sad to know of his death and there could have been some kind of conversation about L. and the parties and the holidays and the work etc.

As it is there's no one to talk to about it. (Well no-one who really knows about those experiences. As an only child with no cousins (no relatives apart from my partner and children) there's no one to talk to about it. When you're an only you really are alone for life. You can marry, have children, get on with and love your in-laws ( and I have and I do), have close friends, but you cannot share the memories of childhood, the funny family rituals in the same way because once your parents have gone, there's no one else who has quite the same connection.

This isn't meant to be maudlin but it can be a lonely road at poignant times like this and is a reminder of how much you miss the closeness of your own parents.

I thank the Lord that we were blessed and have two children who can share and support each other.

AN ONLY CHILD'S TEA-PARTY

When I go to tea with the little Smiths, there are eight of them there, but there's only one of me,

Which makes it not so easy to have a fancy tea-party as if there were two or three.

I had a tea-party on my birthday, but Joe Smith says it can't have been a regular one,

Because as to a tea-party with only one teacup and no teapot, sugar-basin, cream-jug, or slop-basin, he never heard of such a thing under the sun.

But it was a very big teacup, and quite full of milk and water, and, you see,

There wasn't anybody there who could really drink milk and water except Towser and me.

The dolls can only pretend, and then it washes the paint off their lips,

And what Charles the canary drinks isn't worth speaking of, for he takes such very small sips.

Joe says a kitchen-chair isn't a table; but it has got four legs and a top, so it would be if the back wasn't there;

And that does for Charles to perch on, and I have to put the Prince of Wales to lean against it, because his legs have no joints to sit on a chair.
That's the small doll. I call him the Prince of Wales because he's the eldest son, you see;

For I've taken him for my brother, and he was Mother's doll before I was born, so of course he is older than me.

Towser is my real live brother, but I don't think he's as old as the Prince of Wales;

He's a perfect darling, though he whisks everything over he comes near, and I tell him I don't know what we should do if we all had tails.

His hair curls like mine in front, and grows short like a lion behind, but no one need be frightened, for he's as good as good;

And as to roaring like a real menagerie lion, or eating people up, I don't believe he would if he could.

He has his tea out of the saucer after I've had mine out of the cup;

You see I am sure to leave some for him, but if I let him begin first he would drink it all up.

The big doll Godmamma gave me this birthday, and the chair she gave me the year before.

(I haven't many toys, but I take great care of them, and every birthday I shall have more and more.)

You've no idea what a beautiful doll she is, and when I pinch her in the middle, she can squeak;

It quite frightened Towser, for he didn't know that any of us but he and I and Charles were able to speak.

I've taken her for my only sister, for of course I may take anybody I choose;

I've called her Cinderella, because I'm so fond of the story, and because she's got real shoes.

don't feel so only now there are so many of us; for, counting Cinderella there are five,—She, and I, and Towser, and Charles, and the Prince of Wales—and three of us are really alive;

And four of us can speak, and I'm sure the Prince of Wales is wonderful for his size;

For his things (at least he's only got one thing) take off and on, and, though he's nothing but wood, he's got real glass eyes.

And perhaps in three birthdays more there may be as many of us as the Smiths, for five and three make eight;

I shall be seven years old then (as old as Joe), but I don't like to think too much of it, it's so long to wait.

And after all I don't know that I want any more of us: I think I'd rather my sister had a chairLike mine; and the next year I should like a collar for Towser if it wouldn't rub off his hair.

And it would be very nice if the Prince of Wales could be dressed like a Field-marshal, for he's got nothing on his legs;

And Cinderella's beautifully dressed, and Towser looks quite as if he'd got a fur coat on when he begs.

Joe says it's perfectly absurd, and that I can't take a Pomeranian in earnest for my brother;

But I don't think he really and truly knows how much Towser and I love each other.

I didn't like his saying, "Well, there's one thing about your lot,—you can always have your own way."

And then he says, "You can't possibly have fun with four people when you have to pretend what they say.

"But, whatever he says, I don't believe I shall ever enjoy a tea-party more than the one that we had on that day.

Fear, foreboding, loathing and courage

After my last post I received an interesting post from the splendid Ana who paints the most beautiful images and also has an interest in dreams and myth.

I was thinking about the recurrent dreams of my life and, in particular the one I had as a child which, amongst other things, involved large machines. Ever since I have had a kind of fear, dread, almost phobia about large machinery. I can deal with it but I have to really steal myself to be near ships, diggers, planes, the sorts of machinery they exhibit in museums etc etc. They really unsettle me and fill me with a kind of foreboding.

A few weeks ago I was involved in quite a long discussion at Seats for Landing about the pros and cons of various, apparently miraculous cures for ME/CFS which involve retraining the way one views the possibility for recovery, action etc. This led to a discussion in my head about the extent to which fear and foreboding prevents PWME from moving on.

For my part I honesty believe that the mind and body are inextricably linked and that, whilst the symptoms of ME/CFS are biologically/physiologically/neuroligically based, there is a point at which the mind can enable one to move forward a little further. This is not always easy or possible, but there are times when I have believed, in all sincerity, that I feel too ill and too weak to do something and then, for one reason or another, have had to try and found it was possible after all.

I cannot believe that my mind alone will enable me to overcome my physical symptoms to the extent where I could once again work a 50 hour week, travelling the length and breadth of East Anglia, runnning workshops, leading training sessions, making new artwork but I am coming to a point where I think I have to challenge my own preconceptions about what is possible for me and look towards activities and challenges more positively.

I have no real conclusions to offer but just wanted to share my thoughts. When I look at other people with M.E. (or other disabled friends) who have achieved their dreams despite their condition, I look forward with hope. One such friend is the Dutch artist Corina Duyn. Another is Amanda and then there's Michael and Azirca, Signs and NMJ . They all hold fast to their creativity and hang on in.

I'll see you in my dreams.......maybe

Poor Signs has an attack of shingles --- as if she doesn't have enough to put up with at the moment. She's bearing up well though and keeping her sense of humour which is admirable since shingles can make you feel horrid. I should know because I've had it too and it's not nice.

What is also admirable is that she has continued to read her usual blogs and that includes this one where she viewed the last post of the Sgt. Pepper video: gave her strange dreams which combined the Blue Meanies with all sorts of other flotsam and jetsam in her memory ocean.

I have to say that my dreams are always like that and always have been: a mish mash of bits of my own reality all reassembled into a new dream world with no acknowledgement of actual space and time. I also always dream in colour and have three dreams which I have never forgotten --- one because it recurred and recurred when I was about 3 until I was about 6 and two others which were one-offs in my teenage years but which really shaped how I look at some things in the world.

Not once have I dreamt I was flying, having tea with the Queen (though I once made an installation about that subject), forgotten all known facts as I walked into an exam or run for a train just realizing that I am naked. Does that make me boring or odd ? My children often tell me I am odd so I must conclude that it is the latter. Mind you I often tell them they are little gargoyles and they never believe me so maybe I shouldn't believe them.

I'm off for my midday nap now. I'll let you know if I have any good dreams

Sgt. Pepper's Lonely Hearts Club Band

Two posts today!

Happy Birthday Sgt. Pepper: 40 years ago today.

I have loved this since it came out when I was 10. At school it became really cool to like it again in the 70s and now 'Yellow Submarine' is my daughter's favourite film.

It's really evocative to me of a child's view of the Summer of Love. Even at 10, I had flowery clothes, a little leather pouch purse round my neck and insisted on walking round barefoot. It was a magical time for me before the responsibilities of adulthood hit home.

Chickens

Another lighter post about creation --- well, chickens anyway. As I've said before, we keep chickens and every year the population boom comes round. We always seem to have very 'busy' cockerels so there are lots of chicks

Here's the Maternity Block a few week ago

Snowbell keeping things warm



































Cinnamon too

Soon the chicks are born and it's all hands on deck for the annual nursery fest: keeping the little perishers in check, teaching them how to peck at everything in sight in case it's edible, maintain the pecking order, dodging the guinea pigs and the dog and watching out for the rooks and the magpies and the cat from next door. Last year we lost three chicks to the rooks.

Mum and the kids having High Tea

Dad and the other girls have tea outside

Take the chicks out for a quick walk before it's back inside for a quick story and bedtime. They usually like a quick read of Chicken Licken or something more cultural like 'A Tale of Two Chickies' by Charles Chickens.

'ONE MILLION FOR DISABILITY' CAMPAIGN

‘One Million for Disability’ Campaign

The ‘One Million for Disability’ Signature campaign aims to collect at least 1 million European citizens' signatures to combat discrimination in all aspects of the lives of disabled people in Europe. The European Union must respond to the call of at least 1 million. The campaign ‘One million for Disability’ runs to 3 October 2007 and on 4 October 2007 the signatures will be handed over to the European Commission and the European Parliament. At the same time, a gathering of disabled persons, their families, friends and allies will take place in Brussels. To show your support visit www.1million4disability.eu or look at link on my sidebar.

le cinema sheila

I love French 60s ye-ye pop. I think this video is so funny. Watch the chap on the left behind Sheila. He's so full of 'showtime' he looks as if his head will fall off. Talk about enthusiastic !

The Party's Over --- thank the Lord !

Well the birthday's done and the party's over. It was a really good 'bash' in the village hall with lots and lots of girlie stuff and now we're all shattered, but the presents were enjoyed --including the monkey who has yet to be finally named but it's a toss up between ToeJam, Derek, Custard or Measles at the moment.



Now I must retire to a quiet corner under a table with jelly and cake matted in my hair like everyone else here. Yaaaaaaaaaaawn zzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz.............................................

A little levity today

This is the sock monkey I made for my daughter's birthday. It's the first one I've ever made and I'm quite pleased with it

Mourning a bygone age

Yesterday we went with the kids to a Wood Fair --- set in a big Country Park with lots of stalls selling wood-related stuff and jugglers, sculpture, painting etc etc.

In this part of Suffolk and Essex there was always a tradition of real hippy fairs in the 70s and 80s. There was Rougham Tree Fair, the Rainbow Fair in Deham Vale and others too and we always went. There was still the essence of 60s hippydom around with lots of little children running naked, long hair, the smell of dope in the air, wierd dancing, funky old vans and coaches painted in lurid colours and patterns, dogs running about and food stalls where everything seemed to contain beans and onions, soya or dates.

What was interesting yesterday was that this event was based on that model. Indeed the organiser, who is well known in these-here parts, has been a part of this Fair tradition for nearly as long as the Green Man himself has been about. Except, except it's all been tidied up and cleaned up and commercialised and refined. Now, there are still caravans in bright colours but they're professionally restored gypsy 'caras' and the people 'living' in them seem to be playing a role rather than being who they are. (They actually just stay in them while you're there and go in their Motor Homes for the night and then return to a proper house when the event is over). There are still stalls but instead of freely creative, unusual stuff there's 'nice' garden furniture at incredible prices. There were wonderful scupltures for anyone to enjoy but only two and the rest were for sale from £250 up.

Even the food caters more for the 'new' visitors who come now. They arrived in 4x4s, Land Rovers, Audis and some came with lovely Cath Kidson picnic sets and Lakeland accessories. Instead of mung bean stew, alfalfa on rye , there's a selection of 'scrummy' cakes made from organic ingredients that look like something from a Delia or Jane Asher shoot and each slice is £3 or more.

I'm probably old and grumpy, cynical and jaded but the refining of the original events seems sad to me. The air of freedom and spontaneity has gone. The feeling of sharing and companionship and people being themselves has gone. Instead we're left with a dumbed down version of the past where the sole reason is to make money and to tailor the whole thing so it cannot be offensive to anyone. Although it was a lovely day, lovely weather, lovely setting it was all homogenised and I could have been at any other lovely event: rather like the way that every town centre now looks the same and any originality or flair has been ironed out.

Children

GOD’S SOUL

They are children playing
They are pretty celestial flowers,
They are life, they are enchantment,
They are the light that illuminates the terrestrials,
They are the peace, they are the joy,
They are the world that nobody stole,
They are the soul of a King,
Whom all human beings love.


I found these words on the blog of David Santos who is portugese. I believe they are translated from his own language.

The words convey what I feel about my children much better than any words I could write. I'm not sure if David wrote them or not.

Poignantly they are directly below a picture of Madeliene who is lost in Portugal.

Turning a corner

I've mentioned before that our eldest child is disabled. He has a variety of disabilities that affect his sight, mobility and he has learning disabilities too. All in all he is a lovely boy (and this opinion is not just my own bias) who has amazed us with his tenacity and positive outlook.

Yesterday I had a real peek through a new window. When he was born the outlook was very gloomy. Apart from the acute shock of our first born being disabled, there was a great deal of mystery about what exactly was wrong with him and why this had happened. There had been absolutely no warning during the pregnancy. The first few months were a blur of travel to this hospital, that consultant, this clinic, that 'Team'. Though we were both strong for him and for each other, for nearly three years I couldn't talk about the actual birth without breaking down in tears. The fact that both partner and I had worked with people with learning disabilities somehow made it all worse and better; worse because we knew (or thought we did) the reality of raising a disabled child and all the difficulties that brings and better because we knew the system and knew the ropes and, boy, does that make a difference. I cannot imagine what it must be like to suddenly deliver a disabled child and have no experience of that world at all.

Occasionally we would receive comments from well-meaning nurses and doctors about how our professional experience meant we'd be OK but this was different. This wasn't work. We couldn't pack up and walk away at 5.pm. and go home. This was our life and our baby's life. Our professional experience, in that sense made no difference at all

The details of all the ins and outs of bringing up our son may be for another time, but last night I collected him from his regular Monday Youth Club and suddenly I saw we had turned a corner. There he was, spinning the decks in the 'disco room' and coming out the booth to dance round with his friends, having a sneaky kiss from his current girlfriend. He was happy. He was healthy, accepted, had friends and was confident. He was contributing to that circle of people and part of a community. He was wanted and appreciated. Suddenly, for a moment, all the hard work came together and all the concerns for his future evaporated and he was just a young boy enjoying himself with no self-conscious dilemmas or fears.

I'll treasure that moment as I treasure all the others in his sweet life. Despite all the cliches he really is a gift to us and is very precious.

Another Chapter

Time moves so quickly sometimes. It only seems yesterday that our daughter was born. She'll actually be 9 in two weeks time.

This morning heralded the momentous occasion of her very first time away from home: her class are off for a three day adventure trip and she's so excited she could almost burst. Saying goodbye was hard. She was fine but some of the other children and parents were very shaky. The shakiest was the little 'roughty toughty' boy of the class who clung onto his teddy and onto his Mum and who was desperate not to leave.The other quaking wreck was a very tough looking Dad who was in tears as his daughter got on the coach. We've watched all these children grow together since some of them were at nursery together so there was a real feeling of solidarity in the face of loss --and it was a kind of loss: the start of cutting the ties, the beginning of a loss of innocence, dependence. All good stuff but difficult --- as change often is.

This trip marks the next stage in our daughter's life: first time away from home; new school in September (we have a three tier system here). Gradually you can feel her slipping away and you know you have to let her go and encourage her to fly. I hope when the reality dawns that we aren't there tonight to tuck her in and kiss her goodnight that she copes with any yearning ache for her Mum and Dad.

All this reminds me of my first time away. I was not much older than she is now and our school invited children to go on an 'educational cruise' to Norway and Sweden for 10 days. No opportunity for Mum and Dad to come and retrieve you if it all went badly wrong and you couldn't cope. No mobiles in 1967 ---- just an old troop ship that had been converted into a sort of floating school, manned by cooks from Ceylon who spoke no English and made lemonade from yellow powder and jugs of water. Always there was a strange smell of oranges and boiling potatoes from the kitchen. In the 'ballroom' there was a beaten up old upright piano with some child hammering away at 'Chopsticks' or a boy with a withered arm whose party piece was 'Roses of Picardie' sung in a piercing nasal tone. Even now I can't hear that song without a longing for home.

The cruise was fine. I can still remember the boy who used to howl every night for his Mum, his 'sissa' and banana sandwiches; the two girls from another school who always came to the disco ( Monkees, Beatles, Procul Harem, Spencer Davis, Lulu) in identical outfits --- different every occasion; the Force 8 gale on the last day and on the way home. It was terrifying and exhilarating at the same time and the smell of oranges and potatoes mixed with the whiff of 100 children vomiting into the salty air. ('Have this glass of water and a Carr's biscuit,dear. You'll feel much better')

But I also remember the warm

welcome the people of Bergen and

Oslo gave us --these little 10 year olds invading their shops. Even then, 20 years after, they still mentioned the war and seemed to have soft spot for the English. I remember the amazing sculpture park in Oslo and the church in Bergen.

I hope my little girl copes with this important stage in her life and, 40 years on,remembers what fun she had.

Sorry !

Oh dear, I feel almost ashamed of my last post: what a rant ! The frustration was bubbling over but I'm calmer now. Finally I got to make some work and immediately I felt better. Sometimes I forget how good it feels and how much good it does me to just escape to my studio and be creative again. In the early years of this blessed illness I used to try and then feel so ill I'd have to give up.....and eventually I did give up and the studio became a dusty dumping ground for all the junk we didn't want in the house.


Somehow I have slipped again into the role of keeping the many home-based things going and forgetting myself. It was ever thus........my whole life has been a struggle between doing what I want and feeling a terrible need to look after other people first: to put their needs before my own. Even the decision to go into Disability Arts was partly because I could assuage the guilt I felt at being so indulgent as to 'just make art'. The decision was financial too but was still grounded in guilt. Now I am in a position where I can't work anyway and have more time to 'just make art' and still don't because it feels easier to do the house stuff.


Amanda has some wry observations on the discussions that have been going on here and elsewhere (RTS) about managing creativity and a chronic condition and in the end it is all balance. It's no good turning into a professional sufferer (how insufferable) but about making time to go out and enjoy whatever and whenever we can. Amanda gets out and about and maintains her place on her course, RTS goes gallivanting at the Brighton Festival. I even went gallivanting myself this weekend and braved the repercussions by taking my daughter to her arts workshop in the gallery at the nearby Big Town. Usually I avoid it because it's so tiring but Saturday was a 's** it' day so I went anyway and thoroughly enjoyed the pottering round and people-watching I could achieve whilst daughter was making collages based around the new exhibition.


Some of the courage to do this ( and the courage to resurrect the blog) is down to the examples of other PWME who get on and do. Thank you to all of you for inspiring me to have more courage and more self assertion. I must go now and continue with my painting.................

Caught in a web

I do believe there's something in the air about PWME, creativity and frustration. First 'Reading the Signs' regrets all the time she can't get out of her head: as in ~~~ being consumed by that delicious companion 'the new idea', the project, the things you're really excited about so that it lives with you, inside you beside you. Then Amanda bemoans the fact that '..... being low on energy .....I find myself flitting from one project to the next, doing easy things, trying different techniques instead of concentrating and making real decisions that need to be made.' And then there's little me sitting here in a rage, wasting energy on being cross, wasting time by bloody writing about being cross but only able to sit here because I'm so damned tired today.

Weeks ago I was asked to make somethinng to celebrate a relative's wedding anniversary. I'm happy to do it, Want to do it. It has taken weeks to form the ideas ( in dribs and drabs) and weeks to acquire the necessary materials ( I'm into assemblage at the moment and I have had to trail about looking here and there and everywhere for the objects I see in my imagination).

I have less than two weeks to get this piece finished and now I'm so tired I can hardly muster the energy to sit and drink a cup of tea. And why am I so tired you ask ? Well, because there was a constant stream of people here all Friday and all over the weekend ---friends of ours, friends of the kids and they wanted feeding and amusing and good conversation. They expect me to be witty and jolly and somehow, virtually however I'm feeling, I turn it on as best I can --- so that I don't have to show how I really am. The aftermath is that everyone goes back to work, back to school and I'm left with the clearing up: not because partner doesn't share the burden, not because I cannot or do not delegate but just because they have other stuff to do --- earning money, learning, playing, socialising, making decisions and I am here. Here. Always here.

I know I should ignore it. I know I should postpone it. BUT I cannot work on anything unless the place is reasonably (and yes I do mean reasonably) clean and tidy ---- the kids are fed and have clean clothes, the dog is happy (he's not well at the moment), and the place is straight.

It's a fault, a stupidity but I just cannot help it. I have to know that everyone is looked after before I can indulge my creativity. I once said to my GP that I know I'm daft because I am always giving my energy away to other people. He looked completely mystified. He hadn't the faintest idea what I meant. Of course he does it every day in helping people to get well but he's paid --- so maybe it's different. He doesn't have the lack of energy and his work is IMPORTANT, whereas mine is domestic.

This is one of the reasons that my creative endeavours are awry. It's all dribs and drabs and no conserted effort and in part it's my fault. I'm so cross I could burst, but anger is negative energy --well it can be -- can also be a spur to getting on but, of course, I don't have the physical 'go' to get on.

Caught in a web..........................................

Missing You Already.....again

Last week I wrote a piece about the losses that are encountered by someone who acquires a disability. Today I received a comment on that post from my 'cyber chum' Amanda which I found very moving. This has encouraged me to return to the topic.

Here is part of what Amanda said:
'.........when I visited your blog and read this post, it stirred up so many feelings.................
Sometimes I think I live in denial. It is great to create art, but when I lose touch with the fact that I have cfs and what it has done to my life, I do find I can mislay my sense of wonder at what I do have. .........'

I think it is terribly difficult to be a creative person and have a chronic illness or acquired disability which holds you back and changes your whole way of being and working. When I first became ill again, 7 years ago, it was impossible to even think about creative endeavours. I simply existed on a moment to moment basis and prayed that I could get through another day without too much pain or suffering and without being too much trouble to anyone else. As things subsided I'd have vaguely creative ideas but no possibility of actually carrying them out. Over the years my condition has come to a point where I am 'up and down' but generally I manage in a limited way.

Creatively, having a chronic illness like ME feels to me like driving a car with a limiter attached. Before I was ill the ideas came thick and fast and I would have difficulty in getting them down fast enough. Being creative was about a rush of ideas and activity and then the honing of that initial exubernace so that something new could be formed and delivered.

The ongoing recovery from the worst days of illness have heralded the odd spark of inspiration, but now there is no rush and when I try to write down ideas the process is hindered by loss of memory, blurred perception, 'foggy' thinking; never mind trying to get ideas down before a new one comes up -- I can barely retain the one idea long enough. The energy to execute the idea is different too. My old way of working was very focused, very quick. There was a spontaneity, a freedom like flying. Now I'm more earth bound, more shackled.

In the end I suppose it's about trying to find new ways of working, new ways of being in the world. I think about other artists (famous or otherwise) who have had to contend with disability: Monet with his ensuing blindness, de Kooning with Alzheimer's or even people I know such as Corina Duyn or Michael Nobbs who have found ways round their ME to move forward.

It's an ongoing struggle to maintain balance between energy, reasonable health ( such as it is), domestic and relationship responsibilties and the creative urge that won't go away and needs to be fulfilled: the need to express something about how it is to be me, living this life.

As Amanda says:'.............my happiest times are when I manage to strike a balance and not go off the deep end, it seems I need to keep returning to it over and over.'

St Theresa's Prayer

I was recently sent a Round Robin email which contained St Theresa's prayer with a list of instructions about how to send it on and good things will befall me. You know the usual stuff.

It was curious because in this house, through the trials and tribulations of births, illnesses and deaths old Theresa has made herself quite felt as a presence. I've no idea how it started. I did go through a phase of buying religious statuary just because I love the imagery and because there was a funny shop that imported stuff from French and Belgian flea markets and somehow, in the darkest days, these things spoke to me. One I bought was, I thought, of Our Lady and it was only when I got home I realised that the bottom of the statue/buts was covered in roses. It was a bust of St Theresa of the Roses from France. She lived at the end of the 19th century and was quite a tough cookie in her way.

I cannot stand organised religion but I am quietly spiritual and whatever the beliefs I find a certain stillness and something to admire in this woman.

I sent off the email to 6 people as instructed. Not one has responded. Either they don't care, they don't like anything religious or the Subject line 'St Theresa's Prayer' has sent the message straight into the spam tray.

For myself I am pleased that my friend sent me the message and I have been reminded of the prayer.

St. Theresa's Prayer

May today there be peace within.

May you trust that you are exactly where you are meant to be.

May you not forget the infinite possibilities that are born of faith.

May you use those gifts that you have received, and pass on the love that has been given to you.

May you be content.

Let this presence settle into your bones,

and allow your soul the freedom to sing, dance, praise and love.

It is there for each and every one of you.

Pretty pictures from Suffolk

I often take the camera when I walk Tiffin.

He's slow.

I'm slow.

We fit like hand in glove.

Missing you already

Partner and children have gone to big annual arts day. It's for all ages and all abilities. Involves about 500 people and lasts all day -- 10a.m. til 10p.m. This feels strange because I used to organise it ....before I was ill. I cannot fathom how I did it now, in terms of energy: the whole long run up from 10 months before, the organisation, publicity, catering, entertainment, the contracts, budgets, fundraising, volunteer drive. Then on the day I'd be there from 8a.m.to organise, rally the troops, meet and greet, jolly along etc.

One of our friends who has also gone with her child, asked if I would be going today. No. For one I couldn't possibly last more than half the morning and then wouldn't have the energy to drive back. Usually my partner would drive us there and back so I could be with the kids for at least the morning. Apart from that it's still too raw to be faced so directly with what I cannot do anymore. I know if I went I'd meet lots of people I haven't seen for, maybe, 6 or 7 years. They've moved on and so have I but in completely different spheres.

Most of the time I can block it all out. I can listen to my own and others' good advice about moving forward and not looking back. Sometimes the past catches up and I can't help but feel sad and miss the energetic person who was full of ideas and, yes, quite dynamic in my own small way.

I have learnt to appreciate the small things; learnt to love the same small patch of land I pace with the dog because I can't drive to the sea anymore; learnt to 'smell the roses'; learnt to appreciate the extra time my illness gives me with the children ('I bet they love having you at home so much') but sometimes, just sometimes, I yearn to be a grown up participating out in the world. It's all part of the shifting bereavement of acquired disability

Fashionable names, fashionable attitudes and the reality behind them

Reading some more of the Griff R-J book and struck by the ordinariness of all the boys names. When did things change ?

Back in my days of school we all had solid traditional names: Janet, John, Michael, Brian, Melanie, Guy, Linda. Julie, Sarah. Now at my childrens' school there's hardly a name we would have recognised in 1964. Who had ever heard of a child called India, Tiffany, Saffron, Harmony, Darla or Sabian. Who would have given their child such an old fashioned name as Edward, Harry, Cecily, as Henry in 1964. It would have seemed absurd and pompous.

What was it like in the 60s to have an unusual name or a 'foreign' name ? I remember one girl called Mignon (great name, I think) who was teased relentlessly. So was one of my friends who had a Finnish Mum and ate 'strange' soup and rye bread at home. Personally I loved it. I loved going to his house and speaking to his Mum and I loved the glamorous Italian woman who lived 3 doors up and whose house had shiny marble or wood floors instead of carpet. Her kitchen always had different smells to ours and her daughters were dressed immaculately.

Now everyone seems to be more tolerant and ready to experiment with different names, cuisine etc. but I wonder if underneath, that much has changed. I talk to our Polish window cleaner and hear how his grandchildren (who go to my daughter's school) are apparently accepted and yet he himself is exploited and ripped off by his employer. I think of the Portugese people who were attacked in Thetford last year (not a million miles from here). I think of walking down Woodbridge Thoroughfare a few years back. We were with my brother-in-law's then-girlfriend and her two little boys. All three are black -- not pale 'acceptable' honey colour, but black black. She was very fashionable, very elegant and very beautiful with a serene way about her. Her boys were well behaved handsome chaps. I asked my partner who is born and bred Woodbridge if people were looking at us. I had this uncanny feeling we were being gawped at. Was I paranoid or was it real ? 'They're looking at her and the boys' said my partner. We were a spectacle in that sleepy Suffolk market town --- even though for years there had been a US base not 5 miles away with GIs of every hue. We went to a little pub and ate lunch and still the stares remained. It was that day that I got an tiny inkling of how it must be to be apparently different.

Why is it that people can't just see people as people, good bad and in between, regardless of colour or race or religion. I just don't get it and never have.

Surburban heritage

When I was at Art School I did a whole tranche of work about growing up in suburbia. I didn't get to Art School until I was nearly 30 and in my younger days there was a kind of shame or embarassment about growing up in such bland surroundings. I felt I should either come from a more sophisticated background or something more feral and grungy. In other words I should have the cache of being posh or the cache of being working class and down with the kids. I wanted to be cool and where I came from wasn't cool. I grew up in quite a nice semi and was brought up with the same nice middle class aspirations as many of my neighbours and friends but that didn't cut the mustard when I was 17. My heroes were David Bowie and Warhol and the Velvet Underground, Alice Cooper, Nico. Surley they hadn't come from 'nice' houses and held their knife and fork properly, said please and thank you and watched variety shows on TV with their Mum and Dad on a Saturday night. Surely their parents hadn't had a slight distain for programmes on the 'commercial channel' ----there was only one then !

At Art School I began to reassess. Then I realised that many of the people I revered came from similar backgrounds to myself and the idea of coming from such an ordinary place seemed OK.

At the moment I am really enjoying reading Griff Rhys Jones biography 'Semi-Deatched'. With a surname like his I had assumed that he was from Wales and, indeed, he is of Welsh stock, but it turns out he actually came not a million miles from where I lived. He is three years older than me but many of his memories are mine: places, people, music, parties and he has a wonderful way of providig a space in your head where you could almost be really sitting enjoying a strawberry Mivvi whilst you read. Even his father reminds me of my father. His was a doctor. Mine was a Headmaster: the same clubbability of the professions; the same formal attire for small children of the 50s and 60s; the same lessons in how to attend grown ups' parties and hold a sensible conversation with an adult when you were 8 years old whilst trying hard not to drop the sausgae roll and vol au vent off your plate.

The best bit was always later when you had shown you were there, spoken politely to the grown ups and then they'd lost interest in you and were swapping stories and gossip with each other. One of my fondest memories is of sitting under the grand piano at my parents' posh friend's house, with a plate of nibbles and all the other kids: little girls in sticky out party frocks with bunny wool boleros and little boys in tailored short trousers and collar and ties with tartan patterns or cowboys.

Time to try again

I've been following four blogs ( readingthesigns/and velo-gubbed-legs and confessionsofapsychotherapistand michaelnobbs ) for the past six months and decided it's time to try and go back to blogging for myself again.

I feel frustrated and sad that I didn't manage to maintain it before. This was meant to be a space for me to be me without all the baggage of my condition (M.E.) but, inevitably, the illness got in the way and life became hectic and I just couldn't keep it up. I realise now (in part thanks to reading those blogs) that it's OK to be someone with M.E. and still write about other stuff: that one doesn't necessarily exclude the other. I can't escape the illness, even in a virtual world, so I may as well get on with it and be more honest with myself and about myself. All sorts of stuff has happened with regard to a diagnosis and many of my fears and intuitions have been confirmed in the last two years. This initially led me to a place of graet anger and frustration but I'm gradually coming to terms with things again.

Recently 'Reading the Signs' has been trying to find a way to express in words, through a poem, how it is to have M.E. Her recent comments inspired me ---- well they didn't actively inspire, they kind of seeped into my unconscious so that I woke this morning with this verse in my head.
I'm not usually taken to words like this - my head works more visually, but I know how I feel about the illness. Many people, paricularly women, seem to envisage the illness as some kind of seedy man who preys and stalks. I've been stalked in real life and it isn't that feeling for me. It's much more parasitical....................



Blessed curse,
No dripping blood for me.

Insidious lover
Attendant on my misery.
Hands that grab and prey and pull me down,
thrusting, clawing, pawing.

Drown.

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New life blossoms and nourishes

Partner and children have gone away for a few days. I was to have gone too but the holiday was booked before we had Tiffin and none of us had the heart to leave him in kennels or with someone else whilst we all went away. It’s only 5 weeks since his original owner died and the poor old dog would’ve wondered what on earth was happening if we all disappeared.

As it is, it has been quite nice to be alone with Tiffin. At first it was hard to let the children and partner go; especially when my daughter howled as the train left and wanted me to come too, but Tiffin and I have gotten along really well and I’ve discovered that he likes a cup of tea (one sugar).

Yesterday I was weeding a bit of the back garden and then went to do something with the chickens. Normally I am only with the chickens for a few minutes --- with Tiffin on the other side of the fence ---but yesterday I was longer. Tiffin got rather cross and seemed to feel left out – like when a child feels you’ve spent too much time and attention on a sibling. He let go one of his lovely barks –it’s not yappy but a sort of questioning, throaty ‘wrooafff !’ He looked through the slats of the fence so pleadingly.

Later I was sitting on the bench under the apple trees with Tiffin having a cup of tea. I noticed that the rose bush we planted above the grave of our first dog, Dory, had come into bloom.

As one life ends another begins.

Dory nourishes the rose and Tiffin nourishes me.

Hector

Hector

On Sunday my daughter found this tiny bird……..there was no nest nearby we could pop him back into and so we took him inside and tried to keep him alive.

Sadly he died yesterday (Monday afternoon) despite out best efforts. We called him Hector and I’ve buried him in the garden.

Watching this poor little mite fighting for life really made me aware again of the fragility of existence. The past ten years have seen me witness the birth of two children, countless animals and the deaths of many people I love and care about.

Watching this little fella on his cotton wool in a plastic berry box reminded me of watching one of our children in the intensive care baby unit after birth…..lying on some stuff similar to cotton wool and inside a clear plastic crib.

For me its been a too busy period and I have caught a virus which is making feel decidely shaky. The slightest bug can make my keel very uneven with the wretched CFS always running in the background. However, seeing Hector struggle to survive and trying to help him reminds me how I have to keep on trying even when I feel like giving up.

Tiffin snoozing

Another picture of Tiffin

Tiffin is turning out to be such a sweetheart: gentle, forgiving, restful.

What a lovely picture of peace

Tiffin in his new home

Time for Tiffin

We had a Jack Russell cross called Dory (after Dory Previn) for many years and she was a darling. . Two and a half years ago she died aged 16 years Though we loved her dearly she was a typical JRT --- in that she was naughty, always ‘on’ and never really rested. She was a real comedian and always up to mischief.

In my present state of health there is no way I can cope with the JRT temperament. Its too busy and boisterous, but for many years I have hankered after a whippet.

The first whippet I ever met was whilst taking Dory out. That whippet was called Suzy and ever since then I’ve been in love with their shape, elegance and quiet demeanour.

For the last year I have been looking for an old whippet –one that’s as tired and old as me ! At last we’ve found each other and it’s time for Tiffin !

He’s an almost nine year old dog whose owner dies about 3 weeks ago. He had another name but it just seemed wrong so we’ve rechristened him and he doesn’t seem to mind at all. He came here with us two days ago and it’s like he’s always been here.

I really hope we can do him justice and that his last owner is looking down and approving.

Glodene in all her glory

Campers had a makeover

.........and the van has been resprayed.

She’s no longer Ruby Tuesday but a sort of glowing yellow --- now renamed Glodene (Any Barry White aficionados will appreciate this name change thoughI ‘m not sure Bazza Lurvegod ever had a camper van He was too butch to be camp if you get my drift.)

Glodene’s two tone yellow with a white roof and now has orange seats with green patterns on and the interior has been painted pale green too. She feels very filthy/gorgeous to use the modern vernacular.

Spike, Goldie, Jimmy and the kids

Jimmy & Blackie

Snowbell surveying her new home

Suzy & Percy

Wildlife

Having mentioned the chickens I thought it might be apt to actually upload some pictures of them. We just had a new chicken house delivered. You can see Snowbell surveying her new residence. She must approve because she laid an egg in there shortly after this was taken.

There are also our two rabbits: Suzy and Percy. Suzy is a Desperate Housewife. She’s the Edie of the animal run: desperate for a bit of the other but nothing doing. Percy had been ‘done’ and simply cannot understand her advances. He’s more interested in grass, sunshine and any lettuce that might come his way.

Having promised myself I wont let this turn into an ME CFS blog what happens ? I only seem to get here when some crisis in health or something else has appeared.

So much has been happening and I should have been documenting it here but alas and alack the whole thing has slidden down the mountain as usual. I just cannot keep up with it all.

The Easter hols were just over the last time I got here and now half term is upon the horizon.

Much of my time has been taken up with dentistry. Actually I’m very proud of myself because I have found a new dentist much better than the last and had five fillings without incident or panic or anything BUT the anaesthetic seems to do me in – must be the chemicals and my CFS not reacting very well together. It takes 2 or 3 days to begin to feel OK again and by then the weekend is here and the time is filled up with ferrying children to swimming, parties, friends houses or sorting out domestic stuff.

There have been births and deaths. Our brood of chickens declined by one two weeks ago. I went down to the run and found poor Honey lying there with her little tootsies in the air ---- completely out of the blue. The next day having been in mourning for the poor old bird, I went down and Honey’s sister, Goldie and her chum Spike have produced 9 chicks and the next day Blackie and Coaltar have produced another six so we’re down one and up 15 ----25 chickens in all now. When I found the first chicks I was having a miserable day and the birth of those little things completely lifted me; made me think of the birth of our children. New life is always such a joy and a blessing.

For months I have been trying to find a new dog for us. Three years ago our dear old mutt, Dorothy, passed over after 16 years. She’s buried under the apple trees supplying the nutrients for a beautiful pink rose bush just above her little form. Last week I was having a cheerful but tired day and when I woke up my partner had ’borrowed’ a friend’s dog for the afternoon. This little tike is so naughty but so lovely. It was a joy to throw balls again and take her for a short walk in the fields behind our house and to have that nice doggy smell around again. I went to the Oldies dog site to see if there was a dog we might rescue http://www.oldies.org.uk and there was but sadly she has had to go to another home. She hated other dogs, cats, small animals. With our collection there’s no way we could have met her needs. I am determined to have another dog and if possible to have an old whippet. One will come to me when the time is right.

The most recent event is the death of my mother in law. She only passed three days ago. She had been ill for many years but even so the end was swift and a shock. She had Alzheimer’s like my father. She had been such a vital force: kind, funny, naughty, warm and welcoming and like a second mother to me. Though we hadn’t seen the ‘real her’ for many years it seems strange that she has really gone now and even stranger because now, neither my partner nor I have our parents ---all gone and we’re left here to be the grown ups and carry on the baton. It feels lonely and quite frightening. At least my partner has siblings to share time with and, whilst I have no blood relatives left at all, I do have her family to connect with and share memories.

A good old moan to get it all off my chest

Well, I promised myself that this wouldn’t become a blog about chronic fatigue, but sometimes, it just so gets in the way that it’s impossible to ignore and impossible to mention.

The Easter holidays are over, the children are back at school and now I’m left to pick up the pieces. There is still all the clearing up to do after the bathroom was extended – I did some painting (of walls, doors, drainpipes) in the holidays but there’s still stuff to do and lots to catch up on.

None of this has been helped by the fact that my herbalist sent my tincture just before I ran out of this vital stuff and it was lost in the post. I had no tincture for two weeks and, if I ever had any doubts that this stuff was only working on a placebo/psychological level, they’ve all gone now: the combination of looking after the needs of two young children and no tincture has left me on my knees.

In addition to this my teeth have been playing up and I have to go to the dentist. I hate going – not because of the pain/discomfort but because it’s impossible to find a dentist who understands this condition and the way it ebbs and floes; the way it’s so difficult to cope with that level of dental/personal invasion when you feel tired and weak. I can’t cope with more than 15/20 minutes of treatment and yet when I say this, the dentist gets really shirty and uppity with me. What can I do ? What can I say ? If I could be ‘put out’ I would but the NHS dentists want to work as cheaply and quickly as possible and there’s no time to discuss or understand what’s going on for people as individuals ---not their fault but very frustrating for them and their patients.

It’s strange how quickly the body and mind forgets symptoms once they begin to diminish. Recently all sorts of stuff has re-emerged that I haven’t had for months: the feeling that my blood isn’t reaching my extremities, the dizziness, the tinnitus, the tiredness, the lack of focus, the IBS, the sickness. I’m so sick of all this and so sick of losing my energies to other people and having none left for myself. I will pick up and I will get better than this but it’s so frustrating. I love my children and partner dearly –they all mean the world to me and they cope with this wretched condition very well ----its does affect them too, after all, but I still feel so cross sometimes that my energies go on looking after them to the point where I’m really struggling. I could leave a lot more up to my partner, but I don’t want to become ‘the sick one’; I don’t want to become ‘a condition’. I want to contribute, to give, to care for and not to be cared for. It’s a real conundrum, though I have to say it’s nothing new. Whether I’ve been ill or well, I’ve spent my life trying to figure out the problem of how much of me to give to other people and how much to keep for myself. Sometimes I think I’ll never get it right.

I shouldn’t really be rabbiting on about all this, but this blog’s a space for me to let off steam so……………………………

Moan over………………………………………………………………