L'Ombre de mon Ombre

Scary Monsters Super Creeps

2011-11-12T15:47:00.001Z

In another time, long long ago this song meant everything to me: not just because I was a Bowie fan, not because I adored the freakish costumes and (at that time) state of the art video effects, but because the words meant so much at a time that was difficult and very uncertain.

I never thought that over 30 years on, they would seem so apt again.

Those of you who know me from Facebook will probably know by now that I was found 'fit for work' at my ESA assessment. I wont bore you with the details if you dont already know them but, essentially, this means that I must go and find work (for I am not entitled to any benefits from the State) or make an appeal against the decision in which case I shall be given £30 less per week than I am now until the Appeal panel make their decision. If I win I shall recieve ESA in return for jumping through various hoops that supposedly will enable me ot return to work. In any case the ESA will only last for 12 months and then that's it...no more money, no more support....I'm out of my own, on the scrapheap: a 56 (by then) year old, who has been out of work for 11 years, who has a chronic health condition (according to the GP) yet is fit to work (according to the 'medically trained' assessor at ATOS).

Those are the raw practical facts of the situation. They say nothing about the raw emotional facts of the situation.

After 38 years of living with M.E., CFS,,,call it what you like (I'm sick of the debating and arguments)...I am used to being
disbelieved,
humiliated,
spurned,
blamed,
unheard,
doubted,
ridiculed.

In the past, being a quiet and sensitive soul (yes that's how I really am ) my reaction, in my youth, was to back-off, retreat, roll over and give in. As I got older and bolder my reaction changed to

'F*** You. Watch this !'

However, the latter attitude requires energy...emotional and physical and that it something I lacked and lack still.

In all honesty, the last few years before I had to end work were steeped in the latter response: I was so determined to do what I wanted and needed to do (within work/career) after so many years of being held back by ill health that I moved heaven and earth .........and all the expense of my health.

I've learnt now that nothing is worth doing at the expense of my health and that my health is fragile and easily damaged by anything too demanding. So where does that leave me now ? How to respond to this latest insult, scourge of scorn and ridicule (for that's how it feels) ?

I am at a loss.

There is a huge part of me that really really wants to turn round and say

'Right, if you think I'm fit to work then I'll go back to f***ing work and work as hard as I can just to spite you. I'll go back and do all the stuff I've been wanting to do for the past 11 years whilst you have been looking down you nose at me, playing games with my health, happier to bung me my Incapacit Benefit than really try to find out what it wrong with me and help me recover'

'I'll stick two fingers up to you now that your lack of real interest in me doesn't suit you anymore: now that you want to turn the tables and blame me for being ill, and brand me a scrounger and malingerer and either throw me out with nothing or make me join a 'Work Group' so I can make cup cakes and castles out of shoe boxes'

The other part of me knows this wont work; that I need to stay calm and see what happens.

In the meantime I feel betrayed, exhausted, sacrficed, bewildered, very angry and inept because I am facing a faceless enemy who hides behind spin, statistics, lies and self-interest. As ever, it seems, I'm up against all the things I hate the most: bullying, deceipt, oneupmanship, competition whilst pasty-faced corrupt, ego-centris politcians and financiers snigger behind in their ivory towers.

Scary monsters, super creeps

M. E . Awareness

2011-05-04T11:45:00.001+01:00

To be honest, after so long and after so many posts written for M.E. Awareness Day I've run out of things to say. Life goes on and every now and then there seems to be another glimpse of hope on the horizon.

However, compared to many glimpses of the past, these little rays of hope do look promising but they need all the help they can get in terms of support and finance so I would direct you to The Whittemore Peterson Institute. This private research facility in Reno Nevada has made real breakthroughs recently and you can make a donation by going here.

Alternatively, and if you would like to get something for your money as well as helping to fund research you can go here where you will find a range of greeting cards, prints etc which have been designed by people with M.E. All the profits go to XMRV research at the WPI. The card project was created by LeeLee Ingram who is an artist and performer living with M.E.

Like Clockwork - a response

2011-04-08T16:51:00.001+01:00

Thought it easier to respond to all those comments to my last post by writing another.

Firstly, thank you so much for all the support, advice and suggestions.

Looking back at the post yesterday I felt quite embarassed at writing such a whingey, depressing diatribe. I try to be upbeat and positive and maintain a kind of 'just get on with it' attitude. However, having mentioned this on Facebook I was reminded that actually it's OK to admit to being down once in a while and, actually, if the boot was on the other foot i.e if I was responding to such a post I'd say the same as all of you. I'm just not good at giving myself permission to be negative --- in public anyway.

It was actually an outpouring based upon several days of feeling slightly unwell, with a bad back and everything, everything being so difficult and complicated --- not actually because of my health problems but more down to the fact of other aspects of my life here. Having a disabled child and a very old and disabled dog makes things much more difficult for anyone: even trying to find the right car. I bought a 'new' car just before Xmas and it has been distastrous: we can't get my son's mobility scooter in it as well as all the shopping; the boot is too high for the dog to jump into so I have to lift him in and out (hence the bad back), the seat is all wrong for me and the person who owned it before me saturated everything in Febreeze and despite all my attempts I cannot iradicate the chemical smell. We wanted to book a holiday but everywhere was wrong because of my particular needs or my son's ...too smelly, too hilly, no proper disabled access etc etc etc. It just seemed like nothing was easy earlier in the week.

I know too that my partner working from home will be O.K. We've been together a longgggggg time and adapated to no end of different situations. I felt even better once I'd made a start (if only a small one) on redecorating what will become the office. I just needed to take control, make plans.

I DO make plans, 'to do' lists and keep to them mainly but in the last post I was thinking of the sort of 'blue sky' lists I used to make...the big dreams...the progression of a career, creating new work, paintings, films, moving etc. That's what I miss. Everything now is so diluted and small and minor. Whenever I have tried to go for big things (which take a lot of time and effort) I have been thwarted and left undone. For years I have had to settle for everything being small and piecemeal, fractured instead of the constant moving forward and earlier this week it just really got to me.

I need to pull in my horns and accept my own pace and carve out my own space

Thank you all again for all the support. It's great to have such a wonderful sounding board

Clockworkkkkkkkkkkkkk.........................................................

2011-04-06T11:28:00.001+01:00

It's a big year Chez Cusp...lots of anniversaries and big birthdays. I don't really like big occasions...too much pressure and I believe the stress of that is leading to all the dreams I've been having: bizarre, twisted dreams. Dreams about the past, the future, what I've lost, what might happen in the future. Last week, decent sleep was especially precious as each night I closed my eyes and off I went into another technicolour drama-roller-coaster of old memories all mixed up....like some demon had decided to remind me of all the things I used to do but put it through a blender first.

I feel like there's a lot of reassessing going on under the surface. Landmarks have been reached and its time to move forward but I'm unsure about how or what.

In the normal scheme of things I'd have drawn up a plan with bullet points and worked through it. I was always good at that:..'this is the plan' was a joke in our house because that was how I worked...dreams, goals and plans. But nothing is normal Chez Cusp....especially inside Cusp where I'm never sure how I'll feel physically or, at the moment, emotionally. Its not that I'm sad. I just feel sort of pressured that time is marching on, I've been living with serious M.E. for ten years and not much has changed for me ...and I want it to.

Recently, a very good blogging chum was writing about loss of independence due to ill health and how that can affect self-confidence, relationships, self-image. J is a real fighter....gets knocked down and gets back up. I get knocked down, lie there stewing ad thinking and then get up again. I know that being ill enough to keep me at home for 10 years has knocked my confidence. I get little glimpses of the old me...the confident in-charge me, the gung-ho me...and instead of helping me to think 'oh that part's still there' it undermines me because I know its not sustainable: I can only keep it up for so long.

The threat of being assessed for my ability to return to work terrifies me. I just don't know how I would manage going to work. I know that most days I can put on the face...especially in interview/meetings type scenarios and probably come across as confident, personable and capable (unless its a day where I cant find the words and barely remember my own name) but I have lost so much. The skills I had are still there but the whole art scene and funding scene has changed. The people I networked with have moved on. The contacts are lost...and most of all I can only do all that for a short period of time. I'm like a old clockwork toy that runs out of 'wind up not long after you've set me down on the floor

At home things are in flux. We have had the threat of my partner's job ending for months. Now it seems like it might be OK except there'll be more working at home (because office space is scarce so they'll all be gievn a laptop and work at home). To be honest that feels like another piece of my independence lost: for all the company and help I get I need a few days alone in the house, to move about at my own pace ( i.e slowly, amblingly) to not have to worry about other people because, to be honest, even after all this time, I still don't really go at MY pace when other people are at home with me: I kind of try to keep up with the flow and then cover up my 'failings'. It's because I still feel embarassed, ashamed of the fact that I'm not the person I was and because I hate the feeling of lost independence; I need someone else to do a pick up of kids or drive to the supermarket but if I can do it myself (even if its too much) I will because I dont want to give in, be dependent, be frail.

Some of this stuff comes from habit: I spent so long covering up my illness at work for so many years that it's kind of second nature. Some of it is much much deeper stuff from childhood..from being seen as weak and vulnerable and being determined that I wouldn't be perceived like that anymore. I remember an incident in A&E a few years back when I'd had a nasty fall and ripped out three fingernails. The nurse took one look at me and said 'We must get you in a wheelchair. You look so pale and we dont want you falling over in here.' She was saying it because she was concerned, caring.....and I was livid, furious at being 'put' in a wheelchair. I felt like it was a punishment for being so stupid as to fall over in the first place ....so everyone could look at me and point the finger in the waiting room 'Look at that goon..can't even buy 5 things in Tesco without falling over'

So many losses and such frustration. So much I want to do and so hard to do them. So sick of still being in thrall to that dark shadow and sick of being incapable of drawing up a plan and working through it: 'This is the plan'......what's the point ?

A long drive to nowhere.......

2011-03-24T10:36:00.000Z

I got a real flashback/pang yesterday...first in a long time: waiting for my daughter to come out from after school club.

All the other parents waiting in their cars and a beautiful Spring evening. I'd had a very rough day...a lot of pain, digetsive problems, fatigue..spent an hour on bed in afternoon with TENS machine.

I looked at the other parents and thought...

'they're all normal (actually they may not be !)...they're all normal and have had normal days just getting on with stuff...been to work, been to the shops etc etc...I remember that and it's so long ago'

...and then immediately I got a flashback to when this really started in earnest: a day when I'd had a lieu day or afternoon off work and collected my daughter early from nursery .

I'd decided to take her to the seaside ..about 20 miles ...for an ice cream and a toddle by the sea. We got there, with me feeling jaded, and she didn't want to walk/toddle so I got the buggy from out of the car and pushed her a little way by the sea to her favourite spot where there's a rock garden.

I had to sit down ...winded, exhausted. I remember thinking,

'Oh God I've got to push her back to the car and drive home. I can't do it...I haven't got the energy....there's nothing there.'

Of course I had to...we had to get home.

She was about 18 months and I put on the jolly face as we licked our ice creams. I was terrified that my exhaustion and fear would show in my face. I somehow pushed her back to the car, changed her nappy, loaded the buugy and drove home...I knew something was really wrong. I collapsed washing up later....trying to act as if nothing was wrong, that it would all go away.

...and in the meantime I've been at home a lot, watching my career go down the pan, my life disintegrate, my daughter grow to a teenager, watching the other parents progress, get on with ordinary things that they take for granted....and I'm still in the same spot...watching every move, fearful, wondering if I can make it from my metaphorical seat in a rock garden to a car that could take me away from all this

Veteran

2011-01-26T13:23:00.004Z

Lately I've noticed there's a growing trend amongst the M.E. Community: those who have had the illness for a long time are being called 'veterans'. It's a term I hate.
I know that in terms of dictionary definition 'veteran' means '....a person who has had long service or experience in a particular occupation or field' but in my mind I associate the word with people who have made a great contribution or been brave or done something marvellous...like soldiers in battle. They have something to celebrate.

As someone who was diagnosed 10 years ago and has probably had M.E. for 35 years I could be, have been, referred to as a veteran and yet I don't feel I have anything to celebrate; nor do I feel courageous, valiant or as if I have made any particular contribution in terms of M.E. It's just as it is...I'm me, I have M.E., I've had it a bloody long time and I've tried to make the best of what I have when I can...and everyone else's life, M.E. or not, is the same: we all have our ups and downs, all have our cards dealt and have to deal with that hand.

I'm beginning to think that there must be something in the air because there have been other bloggers posting about having the condition for a long time. Nasim has had M.E./Cocksackie since 1984 and wrote this piece last week. It rings more bells with me than anybody else's writing about long term M.E. because she speaks about the fact that how you feel , physically, becomes the 'default' -- it's just how it is and once you reach a certain stage or level of activity there's little else to do but just get on with things as best you can.

Rachel has also written an interesting piece today about her 4 year M.E. anniversary and the challenge that sets because she was told at diagnosis that most people with M.E. get better after 4 years or remain unwell. Of course, in the meantime, this supposition has been discredited but it still set a precedent that is difficult to ignore.

My (edited) response was this:
...Oh its all so familiar and you put it very well. I reckon I’ve probably had M.E. for 35 years now … and I have managed a life in the periods where ‘it’ was at a point where I could do stuff (with rests) and all the ducking and diving; got married, did a degree, developed a career, had children…all that whilst never really being well in the same sense as other people…just well enough, active enough to manage those things if I was careful, very careful.

I was diagnosed 10 years ago and really feel like I’ve tried everything that I feel is appropriate for me. There are those who would encourage me to still keep trying other stuff, other medication, other treatments but to be honest I’m sick of it all and none of it works very well so as long as I can get by I feel I have to be happy with my lot and grateful its not worse or like it was in relapse two years ago.

Maybe 4 or 5 years ago I remember going to my GP and saying that I seemed to have improved from initial diagnosis (that was an understatement…being bedridden, unable to see or hear or speak properly was hell) and yet I had reached a plateau and what could he suggest to push me forward…and the answer was ‘nothing’ and ‘I don't know’.

I was furious at the time but I guess he was just being honest. Sometimes things are just as they are and we have to try to accept and encourage those around us to accept too....'

and that's how I feel...that, despite all the razzmatazz about XMRV and anti-virals, despite all the hoo-hah about recognition of the illness, despite all the Cheneys, Teitelbaums, Protocols, Myhill, Lightning Process, Reverse Therapy, WPI...despite all that stuff I still have to go on living and I still have to get up in the morning, be grateful that I can (nowadays) , make sure the children are fed, warm, the dog walked and medicated (he's been very poorly), the house clean, the cupboards stocked, the clothes washed, the admin. done, the appointments made and kept....and....and....and.

But what would make a HUGE difference to me is if M.E. was recognised as a tough thing to live with whilst you are trying to live a life. Everyone talks about the symptoms but few people seem to talk about the 'living with'. My life would be easier if people recognised that difficulty and if I could live in a country where I/We were supported and assisted rather than sniped at and undermined by a Government that seems hell bent on making every vulnerable, or ill or disabled person's life increasingly difficult and precarious............

I don't want medals. I don't want a special title. I want recognition of the everyday difficulties of keeping my head above water and some recognition of the fact of how people with an unrecognised, unvalidated illness spend their lives ducking and diving, striving and trying and missing out on opportunities because they have to spend so much energy and time kind of 'going along with the lie' until they can't do it anymore and fall over into true chronic illness

I see changes afoot !

2011-01-09T12:52:00.004Z

Every new year seems to accentuate the focus on the challenges of the year ahead and the changes that may come. Some can be foreseen. Some come as a surprise or shock.

This new year the Cusp household knows that there will be changes on the work front. My partner was told just before Xmas that, come the end of March ,there will be no more job: the charity will run out of money. Pity really, because if they could have just hung on until September the Association would have been 75 years old...75 years of helping and supporting blind and visually impaired people in our district and now, thanks to swingeing cuts and the new Coalition's climate of 'save every penny and to hell with the weak and vulnerable...' it will be no more.

It isn't all doom and gloom. Partner has many strings to bow and there are all sorts of possibilities. In a strange way it is kind of exciting...looking at all the possibilities and opportunities for reinvention.

Yesterday we had a visit from an old friend,R. Partner and R were at Art School together when punk was new, possibilities were boundless and fear of the future was an unknown. R is a gentle and thoughtful chap. Over the past few years he has had his share of troubles and come out the other side. A year ago he lost the job he had been doing for 20 years and has reinvented himself with a complete change of career.

I sat back and listened to these two old chums chatting about the old days and the new days to come; both saying how at this age (nearly 50) they were old enough to be able to draw on experience and maturity yet still young enough to take on new challenges, new careers.

I was sort of included in the conversation as if I was one of them. At one point I was even asked if I would like to join them in a plan to do artwork with older people....which is what I used to do before I HAD to give up work. It hadn't occurred to either of them that, whilst they were talking about losing a job through redundancy ---- with the possibility of retraining or creating a new opportunity, I had lost my job through ill health with no hope of retraining or new exciting possibilities. There was to be no retraining for me, no new challenges on the work front, no exciting reinvention... just the challenge of trying to get by from day to day, to keep breathing. It left me feeling that neither of them really understood how it must be to suddenly have no job and have no idea if you could ever return to work...not because you'd be unable to find another job or create a new opportunity but because just surviving, just breathing would be more than enough to cope with.

In any case I almost certainly already have other people wondering what sort of work I could return to : namely the DWP (Dept of Work & Pensions) who will surely some day send me a letter 'inviting' me to go for my ESA assessment to see if I am capable of returning to work. Based on the experience of other people with M.E. I am pretty sure they will find me capable and so I wait with bated breath and wonder what on earth I could do that would be even vaguely meaningful and productive and yet still leave me capable of functioning at home where I attempt to keep up with the daily grind of necessary duties so that this house and home moves along smoothly.

One idea I came across in a moment of whimsy and fear is to follow this opportunity trail which is currently appearing in local Job Centres. I could work from home, spin a few yarns and 'increase my wedge'. Do you think I'd have to wear a bejewelled scarf round my head and gaze into a crystal ball whilst on the phone. Makes you wonder about the psychic and esoteric industry !

.....she'd probably be happier

2010-12-24T10:22:00.002Z

.......actually she'd probably be happier with a cure for M.E. because she doesn't seem able to stand long enough to operate the wretched thing at the moment !.....oh and a halt to all the back-stabbing and ego building of the scientists and psyches...

but in the short term let's try and put it all behind us for a few days and enjoy Christmas as much as we can.

Merry Christmas to all my blogging chums and here's to a fulfilling, healthier, progressive and healthier New Year xxx

Christmas Rush

2010-12-15T11:56:00.003Z

In the past few days we have had to have a real push to try and get another room finished in this, seemingly, endless saga of decorating...and no I don't mean tinsel and baubles and trees...I mean Polyfilla and rollers, paint and sandpaper, emulsion and vinyl silk ...and wallpaper. I spent two whole days (with minimal rest periods) wallpapering over the weekend and into this week and I am tired.

This tiredness is veering between fatigue that pleads for me to go back to bed and wired/tired where adrenaline whooshes through me like a torrent and I am almost hyper. Well...not almost...I am. Yesterday somebody said something to me that was perfectly mundane and yet somehow I found it amusing and laughed and laughed until I was crying ...happy tears but laughing all the same..at something not funny at all. Yesterday I was so nattery, nattery and so outside my boundaries whilst chatting to someone on Facebook that today I felt duty bound to send a message for being so over-the-top. I wasn't offensive and the recipient of this 'out-of-control-puppyness' was fine about it all (thank God) but I felt mortified. I felt like I had become the legless one at the party who has to go to everyone the next day and apologise for dancing on the table with your knickers on your head !

Jodi Bassett has written about these adrenaline surges here and now I think of it I realise that this has been going on for years. Whenever I'm tired but in a reasonable phase of health (i.e.not at death's door) I become almost manic....rushing about too quickly, talking at nineteen to the dozen, stumbling over words, rushing through to do lists.....until I go 'phut! I seem to have no internal regulator that knows how to pace. Is that because I have had M.E. for so long....over 35 years....or was I always like this anyway and that has led me to become more ill ?

Certainly there does seem to be a common thread running through the lives of people I know who have M.E.: prone to perfectionism, wanting to care for other people, wanting to ensure everyone and everything is 'all right, putting other people before oneself, and pushing on...regardless...always pushing on.

I've started reading Toni Bernhard's book 'How to Be Sick'. Almost everyone I know in the 'M.E. Community is reading it too. Once again there in black and white is the story of another caring, conscientious individual; always trying to do her best by her spouse, children, grandchildren, her students (she was a Law Professor) ...going back to work despite everything, despite it being obvious (in hindsight...always in hindsight !!!) that it would be better to stop working, stop doing and just be. This is not intended as any criticism of Toni...just an observation: an observation of how many of us seem to follow that path. I know I did. Time and again I fell and time and again I got up, dusted myself off and went back into the fray.

What interests me is the lessons that Toni says she has learnt/is learning from being so ill for so long (she first became ill at the about the same time I was diagnose in 2001). It would seem that Toni has always been interested in exploring a spiritual path and in particular Buddhism and so she has used that experience and knowledge to try and make sense of what has happened to her. Interestingly too, I have also felt an affinity with Buddhism and yet not had the same time or 'push' to explore that way of seeing the world to the extent of Toni. Nevertheless I still find myself nodding all the time I read the book and there does seem to be only one way to really deal with being unwell: to somehow yield to it and accept it and understand that somehow, for some reason this is how it is for you and how it is meant to be. No matter how uncomfortable, how gruelling, how miserable...this is how it is. No amount of wriggling and anger and frustration (though God only knows we all feel those things because we are human, because we are imperfect) will 'fix' things. For now, it is as it is and once that acceptance is there, the situation becomes a little easier to bear.

I suppose this post and the last have a common theme...in that acceptance seems to be the way: not giving in but resting back and 'watching the day' as someone once told me and trusting that somehow 'all will be well'

All shall be well

2010-12-09T11:23:00.004Z

Many random thoughts rattling through my head so this will be a stream, (more like a trickle) of consciousness: you have been warned.

Thinking about how people deal with their dilemmas, BIG life events and tragedies.

Recently I've been brought up close to how the rug can just be pulled from under you. I had my wisdom teeth extracted and, as anyone who has followed this blog, that was a HUGE deal for me: the build up was two years with no end of negotiations and 'wriggling' on my part and finally I managed to psyche myself up to going and getting the job done. There is no way to communicate how pleased I was to have it over with or how proud I was of myself for having done it. I was literally ...LITERALLY...jumping for joy.

The pay off is that the anaesthetic and antibiotics that I had afterwards have not suited me at all. I can feel deep slippage in the progress department and it feels mighty scary...especially three weeks (or less) before Xmas and the son's 16th birthday. Just when I need to feel some sense of stability and safety in my energy envelope I feel anything but and I'm treading on thin ice. I know I've been here before and I know I have managed to pull out of it with careful management and pacing but, still, it scares me because before that tooth extraction I was feeling fairly chipper and, at times, ...whisper it....almost normal..or normal for me and the relapse of last year stills haunts me.

Christmas for me is a double-edged sword. On the one hand I love buying and making presents for other people and my loved ones. On the other hand there have been many Christmases which hold horrible memories that I don't want to revisit and yet I feel forced to do so because its Christmas and the sounds, smells and 'jolly festivities' are everywhere now...or if you shop at the Co-Op they've been everywhere since the end of August !

I wish I could be more open, more honest, more forthright in this blog. I so admire other people who blog who have the ability to share so much but, in all honesty, I can't. It's just not in me to be too open about myself and that because of the past. Even writing that is scary to me ...........Its just that if things were going to go wrong they seem to have done so at or very near Christmas so that, as for many people, the older I get, the more ghosts and bad memories fill the Christmas space.

Yesterday I was in town and turned round to see an old work colleague standing just near me. We haven't seen each other for about 7 years. She is a truly amazing person. She has overcome no end of adversity, runs a small charity, has brought up three children of her own, 4 foster children and adopted two and as long as I've known her (about 20 years) she has always had a smile on her face: everything is seen as an opportunity, as a possibility for something new and something good...even when a situation facing her or someone she knows looks so grim.

When our son was born and it turned out that he had all sorts of difficulties ( there had been no warning...it was a perfectly normal pregnancy) she was one of the first people to phone. She was so positive, so 'up', so full of hope and even though I knew she meant well I was furious with her. I couldn't see how she could be like that .....here we were with a totally unexpected outcome, a first, new baby at Xmas in need of all sorts of tests, an operation, a diagnosis and the hospitals all working at 25% strength because it was Christmas and we were told we would have to wait until the New Year...and yet she was hopeful and joyous !

Of course in the end she was right.....that baby is about to be 16 and, though there are difficulties and the thought of him going away from school and launching in to the world is scary ....he is lovely, personable and managing so well academically and socially and it was only after yesterday's meeting that I could see exactly what she meant in that phone call so long ago.

Though it's not in my nature I have to learn to be more like that friend and other people I've met more recently who go ahead with real fortitude and positivity. My trust was shattered years and years ago but I have to have faith in the future and know it will be O.K.: this seems to be my lifelong struggle, the lesson I have to learn ---- to have to constantly remind myself that all will be well and to have more faith in myself and a good outcome

C'est Ma Vie

2010-11-18T14:02:00.001Z

Long time no post but its been impossible to keep everything going with all the building work here and I couldn’t see the point in posting to my blog when I really had little to say except that there was too much going on

Anyroadup, what I wanted to write about now was relationships.

As you know I’ve kind of kept up contact with some of you and other new Interwebby chums through FaceBook. Its been really good to maintain some kind of dialogue and to ‘meet new people and in that time, too, a number of new bloggers with M.E. have also emerged and it has been touching to see how the ‘old guard’ rally round to advise, comfort and advise newer ‘recruits.’

One of the issues that has come up in conversations has been maintaining relationships when you have a chronic condition like M.E. and also the way people deal with living with someone else or living alone.

It seems that the old adage of the other mans grass being greener holds true: those who live alone almost envy those of us who live with a partner. Those of us who live with someone sometimes wish we were alone.

As an only child I grew up being happy with my own company. For a while, many moons ago, I lived entirely alone for about 4 years and was quite content. It was the early 80s and unemployment was rife. I was living in an isolated spot with almost no public transport and few amenities. I had a car but as I was also unemployed I could barely afford to run it so petrol was saved for essentials like going to a shop and library once a fortnight or, even more importantly, being able to drive to interviews. Of course this was also before I was ill. Well, I say that, but I should say, before I was diagnosed. There were periods when I felt very unwell in an M.E. sort of way but I had to persevere. There was no-one else to depend upon and so I rested and paced and metered out my meagre resources in terms of personal energy and finances and somehow kept going until one day I managed to get a job. Sometimes I was lonely (this period followed the break-up of a very important relationship and I was still pining if I am honest) and sometimes I was sad and sometimes I was scared but somehow I got through.

In the past ten years or so, of course, I have been ‘officially ill’ and also living not only with a partner but with two children…and assorted animals in a situation that’s repeated the world over: parents trying to keep heads above water, financially, psychologically etc. and, in our case, with the ever looming spectre of M.E. and one child with disabilities who has many, many hospital appointments and many, many meetings…with doctors, with school, with educational advisors, physiotherapists, psychologists, dieticians, ophthalmologists, surgeons, etc etc etc. and I have been only able to get to some of these wince being unwell and always felt guilt about not being able to share the load as I would have done and as I used to do.

My M.E. chums who live alone seem to almost envy the little tribe I live in: the activity, the continuity, the opportunity for contact with people I care about and who care about me, the hope and future I can see developing in my children. The M.E. chums who live ‘en famille’ would love to have more space in which to almost connect with themselves and to have what they have come to see as a luxury i.e. that is time where one doesn’t have to explain oneself: how one is feeling emotionally or physically, to be further away from all the guilt that goes with having to postpone events, having to say “I’m sorry I can’t do that today…” or “ …You go…I’ll be OK here’ (when really you ache to go too and are sick of being left behind) of not being there at the partners work ‘do’ or the child’s concert or, alternatively, going to such events and feeling absolutely frightful and then having to spend days recovering because you dared to go to a school Carol Concert and have to reality of your condition rubbed in your nose.

In the end I guess neither situation is ideal or easy. I would hate to have been alone at times in the last 10 years. I cannot imagine how I would have managed or what it would be like to have strangers coming in to my home to care for me. On the other hand it is impossible to explain how burdensome it is to feel a burden, to deal with the frustration of not being able to do what you want to do when you want to do it without having to ask someone for help, to not be able to support someone you love in the way you would have done if you were well or to feel like you are holding them back.

Very recently, I was alerted to a piece in a newspaper where a celebrity (for want of a better word) gardener had written about her experience of living with her husband who has M.E. There was the usual description of the illness and how hard it was to watch a previously energetic man stay in bed most days and how difficult it was to come to terms with such a sudden change in his whole way of being. There was also a descripton of how hard it was to manage financially and how the gardener found herself trying to care for the husband, the children and work even harder to make ends meet and feel the isolation of the carer: how few people could understand the difficulties, that few people came round anymore because the whole situation was perplexing.

And then came the crux of the story --- there was the partial solution to the problem. The gardener invited friends and relatives to join her at her allotment where they all cheerily shared the work of growing vegetables and shared the childcare and shared the company. And then there was the accompanying happy picture of the nice gardener lady and the husband with M.E…..standing by the door to the allotment shed…smiling…with the husband with M.E. dressed (probably for the first time in 3 days) and holding onto the open door to stay upright (expect few people would have noticed that last bit).

So it was all OK then: the wife/carer had found a partial way through her dilemma, and there was company and happy children and a worthwhile and productive activity………….and something,…. something really needled me.

It REALLY got to me.

Was it the smugness ?

Was it the lovely ‘Guardian-y’., horticulturally, lovely, fresh veggie, Cath Kidson-y, Marath Stewart-y loveliness of it all…when that image/scenario contrasts with our own dear home ?

Was it the rather uncharitable, nasty envious side of me ?

...or was it that there really wasn’t much in there about the husband ?

about the person with M.E. ?

...yes, I said the PERSON with M.E.

Because he had been reduced to a set of symptoms, and a cause of all the difficulties and the sorrow (however unwittingly and however unintentionally). Nowhere was there any mention of how he might be feeling when his wife and children were out on the allotment and he was at home, alone, trying to be noble and charitable and feel pleased for them.

THAT was what needled me.

THAT was what really got to me and which made me feel guilty AGAIN…because it wasn’t and isn’t noble and I know from Sunday School that Jesus bids me shine with a pure clear light and I couldn’t…couldn’t be nice about it.

Whenever I see stories in newspapers or magazines about M.E. we…the PWME are always reduced to symptoms or ‘brave but tragic’. Either way we are portrayed as a set of symptoms with no other life and when we are spoken about as part of a family there is an emphasis on the carer.

Now, having been a carer (professionally and personally) I know how hard and difficult that role can be. I understand the isolation, frustration and sorrow. On the other hand I also now understand how difficult it can be to be the person who is cared for….particularly when living with a condition that is so misunderstood and perplexing for other people. Is it just me or for those of you who are not living alone, do you find that people rarely ask how you are (because they are so used to you not being OK and don’t really want to know or understand anyway) but often say to your partner ‘Oh it must be so hard for you’ ?

Am I being unkind ? uncharitable ? or do people not understand that actually it’s hard for me too, hard for BOTH of us …to maintain a relationship that’s been skewed by circumstances, where the balance of responsibility, caring, decision-making, financial provision, dependability has been altered beyond recognition ? to try to ensure that we don’t allow the spectre to loom too large and spoil too much ? to come to terms with the fact that dreams and plans…as individuals and as a couple …have been turned on their head?

We must deal with what life throws at us. The life I have is not the one I envisaged. The childhood I have been able to give my children is not the one I envisaged though I have done my best not to let my condition impinge on their development or happiness. The things I thought I would do and the things I thought I would be able to support my partner in doing have gone by the wayside but we have made and do make the best of what we have….and I guess that’s what we all have to do. It’s no good looking at other people and thinking if only. The other man’s grass is green but just as full of moss and weeds as your own……………………….

As the song says

‘This is how life goes ... This is how MY life goes ... I have but only one ... And she is the one who chose me ... It's not hell ... It's not paradise..’

What I did on my holidays

2010-09-09T12:12:00.002+01:00

Well, I suppose for anyone who cares, you may have been wondering where I have been all this time: busy, dear reader, busy....with capitals .......B.U.S.Y.

Unusually the summer holidays have flown by all too quickly and it has been a test of strength and character to get through at times because not only have the children (and their chums) been at home for 6 weeks but also a whole team of builders finishing our extension. The building was supposed to be completed by the first week of the holidays. In the event they completed (more or less) in the last week . Most of the time it has been fine. Only one especially bad day stands out: we were looking after a friend's dog for a week and this coincided with a point in the building works where we needed 'all hands on deck'...namely 2 carpenters, 2 electricians, 3 plumbers, 2 labourers.

Nine builders, one senile dog (ours), one confused 'holiday' dog, two near-teenage children who want to lie in their beds and two rather fraught parents do not make for a good mix. Suffice to say that by 8 a.m. that day one child had risen in a filthy mood and, upon finding the electricity turned off (i.e no computer, no lights, no TV) stomped off to town, the other child was in tears because she wanted a shower and the water had just been turned off (resolved by taking her to kindly neighbour), senile dog had been accidentally trodden on, the plumbers had caused a leak in the header tank in the loft and then holiday dog decided to bite one of the electricians ankle ! Oh how we laughed.

Still, we are here and we have survived and now all (ALL ?!!!!! ..Cusp laughs slightly hysterically) we have to do is decorate the new rooms (bedroom, wet room, utility room, kitchen) and clean up and re-decorate the other rooms...3 bedrooms, living room, dining room and bathroom: so that should keep us out of trouble for a month or three.

The building has affected the whole house and now it is time to clean up and re-organise. Fortunately this phase coincides with the start of autumn...a season I love with gentle sunny days and a feeling of new beginnings and preparation.

When I get the opportunity to post again I shall do so but until then think of me up a ladder, filling in holes with plastic wood, emulsioning walls, cleaning carpets and putting things back where they belong.

Looking back Looking forward

2010-08-01T20:13:00.004+01:00

We spent the afternoon at a local lake. We were there with our two children, their friends, our old dog and another who is staying with us whilst her 'Mum & Dad' are on holiday.

The lake is beautiful with hummocks surrounding it, ducks and swans on it and play areas and a river around it.

Today we arrived to find it was an Activities Day for children. The whole place was overwhelmed by small people and their Mums and Dads, Grandparents, Aunts and Uncles and dogs and ice cream vans and tents and stilt walkers. Amongst this bustling throng were marquees with Arts workshops: tie-dyeing, face painting, raft making, wheelie bin drumming, withie making, giant paintings, sculpture, pendants etc etc.

The quality of the instruction and the enthusiasm of the artists was wonderful and there were so many happy faces: proud children, proud parents, little boats held aloft, clay sculptures carefully carried back to cars.....

I saw all this and at first my heart sank. It always does when I see these sorts of events because its what I used to do, who I used to be. I started by running arts workshops, then organising small events, bigger events, Countywide events and training artists in how to facilitate workshops. I was good at it. I had all the right contacts, good ideas, unusual ideas. I could plan a good day or series of days and enthuse and surprise people.

When I became too ill to work I tried to go back to workshopping once or twice. It was disaster. It takes tremendous energy to organise and deliver a workshop...to galvanise people to tap into their creativity, support them, help them move forward ---quite apart from the logistics of travel, organization, packing up materials, putting them back etc etc. I just couldn't do it anymore.

Gradually my contact with that world evaporated...I was ill at home, 'friends' didn't call anymore, busy with their own lives. If we went to something like a fete or a school fayre I was suddenly brought up close to that world and all I felt was a huge sense of loss and sadness....like staring at a vast hole. I still did bits and pieces when the children were younger even though I felt so rough. I designed and painted all the scenery for the Xmas plays for 5 years, did publicity and posters and flyers, did face painting for school and church fetes in the summer. I enjoyed it too but it wasn't the same..wasn't at the same level and there wasn't the same camaraderie you get between artists who do it regularly and are working the same circuit.

Yesterday was different. At first my heart sank and then something else happened because I realised that world I had pined for was over for me. It was a part of my past : 'been there, done that, got the T shirt' as the saying goes.

The workshops were primarily for little children up to about 8 years of age. Our children are 12 and 15. The parents were right in there with their kids...helping to paint and decorate and embellish, reassuring, instructing explaining and it was suddenly like watching myself long ago. I've already done all that: my children don't need that level of support anymore and although its lovely to watch Ifeel like a bystander ...but in a good way because I've done that bit of my role as a parent in the same way I don't have to walk around with a spare nappie (diaper) and babywipes in my bag anymore in case someone has an 'accident'.

I can move on and be someone else, do something else. We're all moving forward and it feels good

Another year over

2010-07-14T13:36:00.003+01:00

Well it might not be Christmas but to paraphrase Mr Lennon

'...what have you done ?: another year over, and a new one just begun...'

and in a sense it is another year over because I just had another birthday (don't ask which one...let's just say that the candles on the cake set off the smoke alarms !)

I was wondering why it is that I dislike birthdays so much. Every year they roll around and every year as the big day approaches I get more and more gloomy and grumpy and just want to hide so I can re-emerge when it's all over.

Don't get me wrong: I really appreciate the warm wishes etc and the trouble people go to. My birthday was celebrated on Sunday and we had a lovely day by the sea with a splendid picnic and beautiful weather and there was an air show/display ...all my favourite things....but it took so much emotional effort to get myself there and get into it because I woke up with that terrible dragging feeling of not wanting to get out of bed at all or face presents or cards or peoples' smiles. What a misery I am !

I think it's because I can't really see what there is to celebrate. I just feel like I've survived another year. It isn't all to do with being unwell either. I was like this before I got really unwell. I've got more and more like it since I turned 40 and that was a good while ago.

Some of it is midlife stuff: the dreams, expectations, hopes, expectations from youth unfulfilled.

Some of it is about being unwell: am I any better ? what have I achieved ? what can I plan for the future ?
Doesn't feel like I can reply with anything positive to any of those questions.

And some of it is to do with hating to be the centre of attention, being the focus. I'd much rather work behind the scenes, much rather buy other people presents, arrange other peoples' parties etc.

One of the difficulties of having a chronic condition which keeps you away from normal life so much is that you get 'out of the loop', disconnected and days can just drift away. One of the hardest things for me is to try and manage the balance between the things I have to do and the things I want to do. Having children means there are always a whole load of things I have to do: cleaning, washing and ironing clothes, arranging appointments, tidying up, cooking, birthdays, help with homework --- all the usual stuff that parents have to do . I'm happy to do them but it takes time and effort and by the time all that is done there's little time for me and not much energy left. (That's why this blog is important because its for nobody else).

Recently, as I said in my last post, I have been branching out more on the internet and 'meeting' new people...people with M.E. It has interested me that for many of them their difficulties in trying to have some sort of life are quite different to mine. Many are really quite isolated and have no real family, let alone children. It seems that they almost envy me. I can see why...in their heads they see the company and the relationships between us. Of course that is something I value greatly....I love my children with all my heart and longed to have them but in many ways it makes management of my condition much, much harder and there is terrible pressure to try and keep up with all they need and want to do.

So another year over and what have I done? What will I do?

Well, I shall try to maintain some sort of creative practice because the Creative for a Second project really showed me how important that aspect of my life is to me. I shall try to encourage more independence in my children because that's where they need to head and that helps me too and I shall try to maintain a positive outlook and explore more about the HSP side of me and some of the reasons why some emotions drain me more than others.

A Touchy Subject

2010-07-06T13:45:00.006+01:00

Recently I've branched out in terms of exploring the Internet and found even more lovely and interesting people to get to know. Many of them also have M.E./CFS or some other chronic illness.

The Internet can be a wonderful tool through which to meet people, gain support, new knowledge and experiences. What has been interesting and thought provoking for me is to gradually find out more and more about these new acquaintances and to compare notes.

As ever, with relationships of any kind, I have 'clicked' with some people more than others and, again, as in any group of people, there has been more exchange of experiences with some than with others.

Names or situations are not relevant here and I am honoured that people have been willing to share stuff with me: as a virtual 'friend' and, simultaneously a virtual (in the old-fashioned sense) stranger, it may be far easier and less threatening to tell me stuff than to tell a 'real' person but still, I always feel honoured if people share a part of themselves.

Now, it may be that like attracts like but it has to be said (well it doesn't have to but I'm going to anyway) that there does seem to be a common thread running through the lives of many people I have met who have M.E./CFS: that they have had some really bad experiences in their lives and there is real trauma. Without going into any details I cannot exclude myself from such a group and it's interesting that I don't go into details precisely because of the nature of my past.

Suffice to say that I cannot help but wonder if there really is some sort of connection between people who succumb to M.E. and people who do not. Let me make it perfectly clear that I do believe 100% that M.E. is a genuine physical illness. Recently, there has been an awful lot of publicity and conversation about the XMRV virus and the possibility ( may well be more than a possibility) that this is one origin of the condition called M.E. However, it also seems that many people carry the virus and yet are not unwell...so what makes the difference ? Are the people who become unwell predisposed in some physiological way or is their immune system also compromised by the way they handle stresses and trauma or compromised because there has been so much trauma ?

There seems to be a consensus amongst PWME that stress makes our symptoms worse and certainly for me I know that, just before I was diagnosed, I had had a long, long period of stress ( about 7 years of one crisis after another where it was me who was expected to sort everything out and cope and support other people). I also know that last year's relapse was preceded by a series of difficult situations. I held up well and coped with it all until eventually everything became too much, my health failed and it took me almost 9 months to begin to pick up again.

As well as getting to know more PWME recently I have also been exploring other ideas for almost a year and one of these is the notion of the HSP or the Highly Sensitive Person:

' a person having the innate trait of high psychological sensitivity (or innate sensitiveness as Carl Jung originally coined it).' According to Elaine N. Aron highly sensitive people comprise about a fifth of the population and may process sensory data much more deeply and thoroughly due to a biological difference in their nervous systems'

Certainly, as soon as I found out about this theory, I felt an affinity and recognition and I subsequently found that there is a whole community of people who consider themselves to be HSP. There are forums, magazines, groups, retreats etc etc and guess what ?: they are nearly all in America and not in the U.K..

Now, to we stiff upper lipped Britishers, this HSP stuff may well smack of 'typical' West Coast/ Hippy Trippy/ Oprah American 'nonsense' (sorry any U.S. readers but this is how this sort of stuff is viewed here :' Oh that's so American') but, to me, there seems some sense to it. It rings a bell somewhere...not just since I had M.E. (which is forever ..well about 37 years) but since forever: all my childhood memories, all my teenage memories are coloured by being exactly as HSPs are supposed to be. Many of my adult memories are filled with experiences of trying to deal with feeling out of sync, too sensitive and trying to find ways to be like other people and squeeze myself into a tight, tight box.

I have joined some of the HSP Internet news and discussion groups and sometimes I find myself thinking (and sometimes saying aloud) 'Oh for God's sake..get a life, get a grip, just get on with it '. This is very un-HSP, very insensitive very 'un-empathetic' but there is a kind of anger in me I think because I probably feel that that is what I have had to do in order to survive for so long...just get on with it despite 'it' being so difficult so why can't these other people ?: not very charitable of me.

The 'it' might be just life, just relating, just trying to be like everyone else when I just don't feel that way, don't respond that way. Eventually of course one becomes hardened, becomes cut off from one's true self because...well because it's easier in some ways to appear 'normal' but inside it gets ever, ever harder. When the crunch comes and there are too many stressors and if or when one of those stressors is a physical illness, then the body breaks down and the whole house of cards that has been built so carefully, so precariously by the HSP falls to the ground.

So here I am being brave: risking ridicule for allying myself to hippy trippy 'American navel-gazing nonsense', risking wrath for suggesting that maybe stress and sensitivity and innate vulnerability may have something to do with why some people succumb to M.E.

I may have been lucky but virtually all the PWME I have met through the Internet have also seemed to be sensitive, thoughtful, creative, vulnerable, giving: the sort of people I'm glad to know, the sort of people who seem rare in the real world. Perhaps it's easier to appear to be that pleasant on the web. Your personality, your response can be edited by yourself so that you appear in the best or better light. I think I appear to many to be quite jolly. A lot of the time I am but I have another side that's gloomy and brooding and feeling uncomfortable and angry that you rarely see here. However, my sensitivity or my 'antennae' as I have always called them, tell me that the people I know through the Internet are good people and are equally so in the real world. They are people who I would enjoy knowing if they lived up the road instead of the other side of the UK or half way around the world. and the common thread is that they have a particular sensitivity and innate gentleness.

Is there a link ? I don't know but I feel there is.

I'd love to know what you think.

* I apologise if this post is rambling. I'm particularly tired at the moment and trying to write this with a background of drilling and hammering and builders all through the house.

Creative for a Second Project 2010: part 2

2010-06-15T12:43:00.011+01:00

Here is my second piece of work for the C4a 2nd Project. It's a series of seven images called 'Is it All in my Head?' and tries to deal with conflicting emotions around having a chronic illness which some people don't believe in.

#1 Is It All in my Head ?

# 2 What if they're right ? What if I'm Mad ?

#3 Praying for a Miracle: Less Talk, Less Arguing, More Action PLEASE

#4 How Do I Live my Life ?

#5 Put Up or Shut Up

#6 Sometimes I've Just Had Enough

#7 Can I Still See Myself ?

Creative for a Second Project 2010

2010-06-10T18:08:00.006+01:00

At the beginning of the year, Kirrily Anderson, curator and organiser of the 'Creative for a Second' project approached me to see if I would like to be part of her second project.

The project is about and for creativity and people with M.E. Kirrily lives in Australia and this 2010 project consists of journals being sent to participants all over the world. They can write, draw paint, include photographs...put whatever they like in the journal for the two weeks it stays with them. At the end of that period the journal must be sent on to the next participant and finally back to Kirrily so that she can collate the work for an exhibition.

So far there are 6 journals and, I think, about 60 participants. There is a Facebook so we can share what we have been creating and the range of work is amazing.

Last week the journal, which is about 5.5" x 5", dropped onto my mat. It was my turn.

So far , I have been creating a little photographic triptych called 'Dead Rabbit'. The images are photos, layered on top of each other, mounted on card and then stitched...some with rabbit fur.

m.e. m.e.m.e.

I saw this trapped dead rabbit and thought of m.e.

Snared

Medical professionals and communication

2010-05-26T10:16:00.006+01:00

WARNING ! HEAVY RANT AND WHINE ZONE. TOTAL EXASPERATION.

YOU DO NOT NEED TO READ THIS BUT I NEEDED TO WRITE IT AND GET IT OUT OF MY SYSTEM !!!!! ;O)

Is it me or are most people in the dental profession incapable of sympathetic, clear and precise communication ?

Those of you who follow this blog will know that my dental saga re. removal of a lower seventh and a wisdom tooth has been going on for over a year. Suffice to say that the extraction process is complicated by the fact that I am not at all keen on having the blighters removed whilst I am conscious but the sedation option now seems to be too difficult because
a) you need to fast beforehand (and the length of time you need to fast varies according to which dentist or oral surgeon I speak to: it is anything between 1 and 8 hours)
and b) the drug of choice is for CS Midazolam which is part of the same family as diazepam to which I have a very nasty reaction.

My dentist referred me to the hospital for the extraction in Feb 2009, having become exasperated by my inability to cope with certain drugs and me having to cancel twice because of my relapse...even after I had told her I had M.E., and explained my 'unreliability' at being able to attend pre-arranged appointments because of the 'nature of The Beast.'

I have now had three pre-op visits to the hospital: each time meeting someone other than the oral surgeon and each time asking about the exact nature of the procedure and the anaesthetics/fasting time they intend to use. I have done so in order to try and secure the best possible outcome for myself as someone with M.E. and with a dental phobia. I have written letters to the surgeon expressing my concerns and asking for a 5 minute conversation over the phone since he has been trying to direct/deflect my questions w through his (very sweet) secretary who reads out his unhelpful response to my letter so that I then I ask another question and she says 'I don't know. I'll get back to you'. It is like playing ping pong with an opponent hiding behind a screen.

In exasperation, two months ago I went back to another dentist ---- a private dentist who was human and treated me as if I had genuine concerns and spoke to me as one intelligent adult to another. I was almost on tears with relief. Here was someone who did not treat me like a freak, a wimp ,a nuisance: yes I could have conscious sedation, yes the fasting time could be as short as 2 hours (do-able for me...just) and it would be fine. I then spoke to their Oral surgeon and all went well until we discussed my bad reaction to midazolam at which point I got referred back to the hospital having been told by the dentist's Oral Surgeon that it was not unreasonable for me to ask for a face to face consultation with the hospital oral surgeon and anaesthetist about alternatives to Midazolam i.e that I wasn't just being a nuisance and unreasonable.

I wrote another letter an yesterday was the big day...I would finally meet the man himself, spend a quality 5 minutes sorting out how they would perform the extraction and the anaesthetic they would use in order to secure a best possible outcome ......and then get on with it. I just want this over and done with.

This is not how the NHS works. I went for the appointment and was about to be directed down the pre-op 'X ray and more blood tests route' again until I said quite emphatically that I'd already done all that and had just come to talk about etc etc.

I wait in a crowded, hot waiting room amongst a group of tired, irritated people who had had a enough of being shoved around (when I did go for the pre-op blood and X-rays last September it took 4 hours !). There were people with tales of being there since 9 a.m. ( this was at nearly 1 p.m.), tales of an elderly woman whose notes had been lost and was distressed and wanted to get back to bed on the ward, tales of people who had an elderly father in day care across the hospital site and a disabled son at home with a respite carer who had to leave by 1.45 and yet his mother had still not been seen by 1.15 p.m....and the hospital knew her situation.

Eventually I am called. At least we can have a proper adult discussion and sort everything out. I want this over as much as anybody. I walk in the room expecting to see the Oral Surgeon ( I know what he looks like). I am met with a very tired, disgruntled woman about 28.

'What was it you wanted then ? Something about anaesthetics ?' ..she asks as if I she is speaking to a piece of sh*t on her shoe.

I explain, again, about my concerns (for it is obvious she has not really read the correspondence and nobody seems to take a few minutes to read your notes before you enter the room)

'Well, you can't have Midazolam because of your reaction to diazepam, they're part of the same family of drugs' (yes I know that ...I told you)

'The only way is to have a local...be a five minute job.'

' Are you sure ?' (Really incurring wrath now.....questioning the expert !) ' Only my dentist extracted the lower 7th of the other side and it took about 20 minutes (of torture....but I didn't say that last bit).

'No it'll be easy....it's all I do all the time. ( no wonder she looks so bloody grim ) We'll just pop them out.'

(I didn't tell her that the oral surgeon at the private dentist said, when I asked him if I might just as well go for a local and tough it out, 'Oh God know...I wouldn't want it out with a local...there'll be stitches and everything and it'll be nasty.)

I was flummoxed. I didn't know what to say. I was tired and exhausted and thinking about the 30 minute drive home.

'That do you then ?' she says.

'Yes, I suppose so...' I find myself answering.

So that's it...out with a local.

Why is it then in such situations I always come to a point, no matter how much I rehearse my attitude and responses, where I feel like I'm at school and must do as I'm told: that I'm standing the in my nice grammar school uniform waiting to have whatever someone else thinks is good for me, done to or metered out to me ? I hate that feeling and hate myself for having that feeling 36 years after I have left school.

What makes me really angry is that all I've ever asked for from the original dentist and the hospital is a a very little time and a proper reading and addressing of my questions,. When I sent similar letters to the original dentist her response was
'Well, none of my other patients make this much fuss....but then...we've got a receptionist with M.E...she's never here. Always depressed...she's gone down that route' (make you own minds up about her attitude to PWME...anyone hear a little voice saying 'waste of space, wimps, malingerers ???)

Yesterday was hell anyway with builders banging constantly, daughter's birthday coming up, cake to be made, presents to be wrapped, son also at same hospital for another appointment. It took all I had to get to the hospital yesterday and our conversation could have been held over the phone: no journey for me, no waiting, no taking up valuable time of surgeons, secretaries, getting in the way of patients who also had busy lives but who really needed to see a dentist in person.

Why will nobody listen to me ? Is it too much to ask ? and what do I do with this latest fobbing off about having a lower seventh and a wisdom tooth out with only a local ?

Rant over ....well nearly....

* Having said all that I recognise that there is something else going on here and it probably has something to do with my whole attitude to authority and, in particular, to the medical profession.

Don't get me wrong: without the NHS my son would probably not be alive and even if he was he would be in much worse health than he is. In a crisis and where children are involved, the NHS works miracles.

On the other hand, I have seen other relatives go through hell, placed inappropriately, doctors playing God, expecting to be treated like God, being unreasonable (when my mother had terminal cancer she fell and had suspected fractured hip and the A&E doctor wanted to send her home. It was only because my partner and myself physically stood on front of him and told him if he sent her home we'd report him that she stayed in hospital...and even then she ended up on the wrong sort of ward, where all her drugs were messed up , she was not fed or changed and she stayed there until I begged the local hospice to provide a bed.) and at the same time I have worked in the NHS and seen the disorder and waste first hand. I know for a fact that yesterday's oral surgery clinic (every Tuesday 9- about 1.30) had 29 people to see and that is a 'light' day...usually it is around 37. How in God's name can anybody --even the grumpy 28 year old..be expected to process 29, let alone 37 people in about 4+ hours ? The whole system needs an overhaul with patients and staff treated like human beings who need and deserve proper (not begrudged) respect.

Can you tell I'm very angry ? ;o)

Shadows and glimpses Part 2

2010-05-20T11:31:00.001+01:00

Firstly, thank you all so much for your responses. It's amazing to feel I have such a wide range of ideas and opinions to draw on at a rather confusing point. There are so many points to think about and address that I thought it best to pull it all together in a new post rather than another comment: to do justice to the amount of time and thought you have all contributed

You're all right. It is a real stumbling block to compare yourself to other people and ordinarily it's something I don't do --- it's pointless and, in fact, usually I don't very much care how other people live their lives so long as they don't harm or upset anyone else.

This case was different somehow because I'm so close to those people and have known them for so long and been involved with many creative projects with them both long ago. I see that they have somehow managed to walk that tightrope that Dominique refers to: they have maintained their creative practise despite their own difficulties (and they have had their own) and brought up two delightful children who are a real credit to their parenting skills. I just wondered how they did it when, in may ways, the tools they started off with are so similar to mine and my partner's. One of that couple is my partner's brother and the the woman is someone I have known longer than my partner. Her upbringing and the values she grew up with are even closer to those of my upbringing. It's like we all started off from a similar point with similar tools but somehow they utilised theirs more ably so that now their children are older and beginning to move away they don't have the task of desperately trying to retrace steps back to who they were/are because they are already there. I feel like I've completely lost touch with the real creative free spirit I was.

I think some of it is how we view our creativity and for me the tug between being creative (which deep down I see as selfish) and being responsible and caring has always been a huge stumbling block for me: the caring stuff almost always wins. In the case of my relatives, they are very caring and certainly their children have been very well looked after but in a much more pragmatic way than ours. They are much better at saying 'no'.

The other stumbling block has always been the 'shoulds and oughts' as Signs mentions and I guess this stumbling block and the aforementioned one are all part of the same package.

In the end there is no way that I can change my caring nature, the love of my children or my reaction to people in need -- i.e. to run across and help. That applies to anyone I care about really -- my children, partner, neighbours, friends, blogging chums, It's just who I am and at nearly 54 I doubt that it's possible to become a hard-edge creative diva ;O)

What I can change and what many of you mention, my sense of self worth about my creative side and a recognition of the fact that that matters too and I should set time aside for it. I need to get back to me somehow -- no matter that I have children, or a disabled child or that I don't always feel that well. I need to honour that side of myself and I know that if someone came to me with the concerns I have outlined, then this is how I would advise them. Secondly, I need to do it and not just talk about it.

Thank you again for all your thoughts. You're all treasures ;O)

Shadows and glimpses

2010-05-18T17:32:00.002+01:00

We went away this weekend: the first time I’ve managed to travel that far ( a WHOLE 40 miles !!!) since the summer before last. It was great. Not without its difficulties ….because for someone with chemical sensitivities, staying in any accommodation is risky --- and this time the perfumed washing powder used to wash the duvet covers got to me big time, ---- but, nevertheless, it was lovely to go for some peace away from the builders and the everyday grind.

And today there is more peace because we have a 9 hour power cut in the village for ‘essential maintenance work’ so there is no phone, no heat, no internet. No one using their electric mower, no builders with their radio on all the time and no TV. Even in the countryside it is noisy these days and round these parts, my dearios, many people are retired and at home all day and they are hobbyists --- usually men and usually men who like machines: lawnmowers, tractors, , hedge trimmers, lathes, woodturning etc etc and they all make a noise: and you thought that Cusp Villa was situated in an ocean of solitude and quiet in the Suffolk countryside ----Hah !

Our weekend retreat was near to relatives’ homes. We visited this couple on the way back. One is a musician, the other a textile artist. I have known one of them longer than my own partner…nearly 30 years.

They have two children, like us, and a much more bohemian attitude to life than us: they’re not concerned about a tidy(ish) house, not concerned about set mealtimes. They’re concerned about their art and getting stuff done. The house is unconventional, chaotic and happy. They are not without their own health problems.

I wonder how their lives seem so different to ours.

What is it about me that prevents me from staying with my creativity? What is it that makes me put my all into the children, the house and trying to stay above the waterline with my health ? Why is it that this other couple are still relatively close to who they were 25 or even 30 years ago and I have drifted so far away from who I was all that time ago.

Some of it is sense of self and sense of responsibility.

They are both caring parents and caring individuals who will and have been there for other people in the family when needed…..but they still maintained their identity and their practice. I, on the other hand, have a much lesser sense of self, much lesser confidence in my ability to be creative than them…even though I know this is wrong of me. My identity is bound up in being the rescuer, the helper, the aid. Theirs is bound up in being creative. Their own children call them by their Christian names rather than Mum & Dad. Our children only do so as a joke: I am very much the parent. I am not seen as an artist or anything else other than a parent or as someone who’s not very well. That saddens me.

My sense of responsibility is huge, overwhelming. This may be a legacy of being an only child…and the only child of a parent who was often unwell and another parent who worked with disabled people and spent their life giving and encouraging.

If there is a choice between my creativity and the needs of my children --- even if that need is relatively insignificant (‘….will you help me put on my socks…’) I will go to them and put myself aside.

It is true that having a disabled child puts greater stress on one’s need to be there as a parent (the child who needs help with socks is 15….he can’t bend down that far and socks are difficult to put on at the best of times…never mind zips, buttons etc which are an impossibility) but even so, why do I put everything on hold for them ?

Am I too giving, too saintly [NOT !!! ;o) ] or am I just scared to put myself first and take the leap back to being an individual adult whose creativity matters ? Is helping with socks the easy option ?

In my last post I spoke about living on the cusp, on the edge. That holds still. I do live on the cusp because of my health, but, after that visit this weekend I am beginning to feel that there is something else going on that prevents me from being true to myself.

Maybe it is the natural order of things: that you give as much as possible to children when they are little and incapable of so much and then gradually they learn and become independent and begin to fly the nest, fly further, need you less …..and this point is during a period of adjustment: me adjusting to my children’s’ increasing independence and lack of need for me.

And if that is so, what does that mean for me ? Who am I ? What shall I do ?

When I first became so unwell that I could no longer go to work, there was a part of me that thought

‘Right, well, however ill I am, at least I’m here and I shall do whatever I can, when I can, for the children because they are the most important thing (at this point they were only 2 and 5 years old) and the rest (i.e. an career plans, creativity ) can go hang because I can’t do it all now like I used to (and boy did I do it all !!!) and so I must set priorities…and they are number one.’

Now I’m not so sure that holds true any more…even for my son who is more able and independent, despite everything. Maybe it’s time to try again and move out into the world no matter how unwell I might feel at times.

Maybe those shadows I keep sensing, maybe those glimpses of something else are beckoning….but it’s a very scary place to be.

BLOGGING FOR M.E./CFS AWARENESS 2010 :

2010-05-10T11:59:00.009+01:00

M.E., Invisibility and Blogging

So often M.E. is invisible. So often people with M.E. look well.

‘You look so well’

‘To look at you, you’d never think anything was wrong’

The frustration of feeling so ill and looking quite well can be demoralising and infuriating. Recently I read the blog post of someone with M.E. who was so desperate to be understood that she wished she could look more ill so that people would realise how ill she felt: so that the face matched the suffering.

There’s the dilemma for people with an invisible illness:

we want to be free of the illness but that option isn’t available;

we want people to recognise our pain and struggle but that’s not necessarily an option because we often don’t look as ill as we feel so we are lumbered with looking quite well, feeling quite awful and needing some way of straddling the line between what we experience and how we are perceived.

Blogging can be a way of reaching out and communicating and offering a helping hand when living in such a paradox. No one can see you and only the words matter. You can be who you want to be, when you want to be.

There seem to be two sorts of blogs written by people with M.E.: those who use the blog to list symptoms, cry out, vent, share progress (or otherwise), politicise, campaign and those who use their blog as an outlet for the person beyond the illness, the person who was there before the illness and is still there despite the illness. Some blogs manage to share the two approaches but by and large most blogs by people with M.E. lean more one way or the other.

When I started my blog it was an outlet for the person I could still remember had been there before ill health wormed its way in like a parasite.

In the first few months of blogging I vowed never to mention my illness:

here was a space that would be M.E. free,

here was where Cusp met the world on Cusp’s own terms and no one could see or know how long it took to put a post together,

the desperate searching for words and phrases,

the pains in body,

the fluctuating levels of anxiety,

the feelings of nausea,

the headache.

Here was a space where I wouldn’t have to worry about standing up, keeping eye contact, smiling in all the right places, keeping up the pretence that everything was OK whilst communicating with someone else., not letting my guard down…not letting myself down.

Eventually, even that space was deemed less than sacred.

The spectre of M.E. infiltrated my blog and I started to hint, started to mention how I was feeling…..physically.

I couldn’t keep up the pretence even in a virtual world anymore than I had been able to keep up the pretence in the real world at work when I was feeling terribly ill but desperately trying to carry on regardless, not give in, not roll over.

Another plan spoilt.

Another dream stolen.

I lost interest.

I abandoned the blog…

in rage,

in frustration,

in despair.

And then after a few months I began to read other blogs written by people with M.E.: blogs that were witty, humorous, thought-provoking

...and sometimes they mentioned M.E. and sometimes they didn’t.

I tried again.

This time I was honest and attempted to get the balance right…between the person behind the malady and the person who has to face up to being lumbered with obstacles, frustrations, difficulties ..like any and everyone else. I didn’t have to hide myself away or hide from my own difficulties but I could express the me that is still here but often hidden and I could communicate and relate to people as if I was still well.

It is much easier to be what I think of as the real me in a virtual world than the real world.

In real life, it’s much harder to be who I really am: the difficulties of getting from A to B, the constant interruptions by ‘that spectre’, the frustrations of trying to maintain family life and hold to my responsibilities as a parent whilst keeping the worst excesses of M.E. at bay, make it hard to maintain flow, hard to maintain the me beneath the illness.

In the blog, I can drift in and out of communicating when energy and space allow: you can see who I want you to see.

Recently I was challenged to reveal my ‘real’ face, my ‘real’ name.

I was perplexed.

Should I reveal the ‘real’ me ?

What would be the point in doing that ?

What would that mean for me ?

Which is the real me ?

Is there a difference between me in the world and me in a virtual world ?

For my readers -- if I might put it so boldly -- there is no ‘real’ or ‘not-real’ name or face because here, here on the Web, I am Cusp and only Cusp.

It’s the only way you know me and it’s who I have chosen to be in this space.

Cusp is a name I chose to represent myself on the Web

Cusp: the me who is unfettered and unhindered by that ‘bastard illness’ as one dear blogging chum once called it.

Cusp’s home: the blog …. the one place I can come to and get some space and peace away from what is supposedly the ‘real’/ real world me because the body who walks about in space and time is not the real me…it’s a diluted version. If I revealed the ‘real’ me then there would be no joy in blogging because I would have no escape from the constant struggles of every day

Cusp: kind of alter-ego but only a kind ..because essentially the Cusp you read about is the essential me and I chose the name specifically because it exemplifies who I am and where I am because, like a lot of people with M.E. I live between two places…

between ambition and practicality,

between hope and realistic expectation,

always living on the periphery,

the edge,

always on the cusp of being able to get somewhere

On the blog, whilst I still have to live real-life me, I can release the hidden me and be closer to who I was in real life because Cusp is a part-remnant from another life,

a former life,

a life when I met more people,

did more things,

felt relaxed about life and what needed to be done

when it was easy to do the smallest things

even the hardest things

and a life where I felt useful and competent and vibrant

Blogging has been a lifeline. It has helped me to feel part of a community again, to feel appreciated and to find lots of other people to appreciate –-- for their kindness, humour, creativity and given me the opportunity to express a part of myself that could easily become submerged beneath the onslaught of ill health.

Blogging brings awareness, self-awareness, awareness of a bigger world, awareness of possibilities ---- a world away from what can be a very confined existence.

Blogging brings freedom.

The Moon and I

2010-04-29T11:14:00.002+01:00

At times like this I sometimes feel like my only real connection to the universe is the moon...the dear, dear moon. My relationship with the moon goes way, way back. I feel an affinity and I am in awe of her beauty.

Times are stressful Chez Cusp. The novelty of the building work has waned and the constant enquiries and cheery banter from neighbours and other villagers has become an irritation:

'Isn't it marvellous ?'
'You're SO lucky'
'Isn't it big !'
'It'll all be worth it in the end'

This last comment is supposed to be a salve for the 'trauma' but it's not because I know too that it will be worth it in the end but at this point in time -- probably about half way through the actual construction, --- I am sick of having people constantly around me, noise, dust, a kitchen window bricked up so no light penetrates the room, the temporary loss of two other rooms and a lavatory so that everything is squashed into the remaining space, the constant serach for things mislaid, the moving of cars in and out of the drive whilst still in my dressing gown for yet another delivery of bricks, blocks, wood, and above all the sense that my time and space are not my own but shackled to someone, some thing else's agenda. I already live with a parasitic agenda keeper. I don't need another to piggy back the original parasite.

And all the time the world spins and the moon looks on...her beautiful, pale golden cream smile glowing down at me, reminding me that all will be well, that this is just a phase, a passing phase and she, and I, has endured and survived much, much worse.

Dear, dear moon. You make me cry with your compassion and grace

Happy Birthday Dusty

2010-04-16T08:31:00.002+01:00

Today would have been Dusty's 71st birthday. Can't imagine how she would have been at that age. Probably still wearing the huge eyelashes ;O)

Here's a very rare and lovely video of her to celebrate her life and all the beautiful music she left for us.

Claude Francois and The Clodettes: Mais Quand Le Matin

2010-04-06T18:33:00.005+01:00

I found this on YouTube and those of you who follow this blog will know how I love 60s pop; especially Euro pop and in particular French stuff.

So here's a treat for like-minded souls: Claude Francois (who was HUGE in France and the french-speaking world til his death in 1978) doing a 1968 french hit but in Italian ('Si Torni Tu' ) on RAI Uno.

What I love is that it's live and you can really hear the drummer and the backing singer and CloClo (as he was known) is really 'giving it some 'with his dancers, The Clodettes. He really is putting his heart and soul into the performance (but he always did...a real showman). They look so alive and exuberant and as if they are having such fun.

Watch for the splits near the end.

Enjoy ;O)

Happy Easter

2010-04-01T14:12:00.005+01:00

HAPPY EASTER

At last the builders have gone off for their Easter break and all is quiet for a few hours until the children burst through the door for their Easter holidays.

The weather is being unreliable and in some parts quite ghastly but here in East Anglia we have been blessed with real Springtime conditions: blue, blue skies with fluffy colouds, daffodils bobbing their heads in light breeze and the lambs in the meadow down the road gambolling away around their Mums.

I love this time of year

I wish you all a lovely Easter break and, for those of you who are feeling especially poorly, I wish that the Spring weather, the new life, will uplift you sufficiently to get through another day.

Don't eat too much chocolate !!!

Happiness Award

2010-03-24T13:13:00.006Z

Chris over at SickandTired has very kindly nominated me for a Happiness Award.

Thank you Chris. How very, very kind and cheering---- especially considering what a grumpy old cove I can be in RL ;O)

Nothing to do with having M.E. I'm just middle aged and grumpy sometimes.

Anyroadup, apparently the rules of the Award are so:

- When you have received this award you must thank the person that awarded you this in the new post.

- Name 10 things that make you happy.

- Pass this award onto other bloggers and inform the winners

So here goes:

1. Kissing my children goodnight on their lovely little heads. Even though they are now 15 and 11 they are still my babies to me...so I often have to sneak in after they are asleep and do it then

2.Talking daft to the dog in a language only he and I understand

3. Being anywhere by the sea: the sounds, sight and smell of the ocean

4. Watching french films from the 60s

5. Taking a good photograph

6. Making a lovely cake or a nice meal that everyone enjoys

7. Making a toy or clothes or anything for someone that makes them happy

8. Listening to Dusty Springfield CDs

9. Thinking about my parents and my childhood

10. A soft pillow and a nice hot water bottle

I nominate Signsie, Azirca, NMJ, Michael, Rachel , Amanda and Ashy.

I would have nominated Jo and LeeLee too but I believe thay are already standing on their podiums with awrad in hand and I'm not sure if yo can awrad someone twice. All these people deserve the awrad because they are resourceful, cheerful , supportive and contribute so much to the blogging community

Woolton Pie for supper

2010-03-15T15:14:00.005Z

Another long time no post. My apologies. It is a very busy time at Cusp Villas and there is so much to do .

For almost a year now we have been planning to either move house or extend our existing dwelling. This is mainly so that the house is easier in terms of access for our son.

In the end we decided to extend the house and the builders have moved in with avengence. This morning at 7.15 we had four builders, two electricians, three plumbers, a building inspector and our architect on site. I shall hereafter refer to Cusp Villa as The Site since that is what it now resembles --- a building site -----well it would because that it is what it is.

So far the builders have uprooted two very large bushes, a privet hedge, taken all the windows and doors form our utility, downstairs loo and boot room and as I write there is the merry clatter of pneumatic drill on concrete flat roof. All the ornaments on a shelf in one of the bedrooms have ended up on the floor from the vibrations.

Oh happy day !!!

The son is delighted at all the diggers, trucks etc. The daughter is slightly unnerved because she likes things to be in their place and nothing is at the moment. The partner and I are kind of resolved and adopting a Churchillian bulldog spirit, stiff upper lips, gritted teeth, strong corsetry and gallons of strong tea. I imagine this is a bit like it felt in wartime circa 1940. Think we'll have Woolton Pie for supper tonight and powdered eggs for breakfast.

The dog is having what the french refer to as a 'crise de nerfs' --- kind of nervous collapse. He has been sick three times and cannot understand why everything has been moved including his bowls and bed. Poor old boy. I fear the RSPCA may be round to nab us for cruelty to elderly pooches.

Right time to sign off. I shall report when the sirens are silent and it's time to come out of the bunker.

Toodle Pip !!!

Maman je t'aime

2010-03-13T14:03:00.003Z

It really is very naughty of me to post this so near to Mother's Day but it it really highlights the knife edge that a 'mother's love' can be. I love the animation.

I'm sure my mother would have seen the funny side, God bless her.

Thank God for common sense

2010-01-25T17:52:00.003Z

Thank God for common sense and justice. Lynn Gilderdale's mother found not guilty of murder

See here

One of the trials of growing older

2010-01-20T13:34:00.004Z

Today I learnt that Kate McGarrigle has died. She was one half of a duo: singing with her sister Anna. Together they wrote the most beautiful songs and, for me, they filled the mid and late 1970s with lyrics which were pure poetry. They spoke to me and filled my head with sweet and heart-rending images. Nowadays Kate is better known by the younger generation (if she is known at all) as the mother of Rufus and Martha Wainwright. For me Rufus is too affected, too ornate, too hysterical, too arch and too knowing. He is the opposite to his mother and aunt who seemed unaffected, genuine, sincere and humble.

Every time another of my heroes dies I feel the loss deeply.

Heroes have always been important to me. They shine a light on part of myself and influence the way I see the world, They inform and protect me by showing that there are other like-minded people: that I'm not alone, misguided, lost.....and now another is no longer with us.

Some say a heart is just like a wheel
When you bend it, you can't mend it
And my love for you is like a sinking ship
And my heart is like that ship out in mid ocean

They say that death is a tragedy
It comes once and it's over
But my only wish is for that deep dark abyss
'Cause what's the use of living with no true lover

And it's only love, and it's only love
That can wreck a human being and turn him inside out
That can wreck a human being and turn him inside out

When harm is done no love can be won
I know this happens frequently
What I can't understand
Oh please God hold my hand
Is why it should have happened to me

And it's only love and it's only love
And it's only love and it's only love
Only love, only love

Only love, only love

This of course is one of the trials of getting older: the longer we stay, the more people we have to watch leaving and I'm reminded of my elderly grandmother who, at nearly 90, had lived too long. After another bad chest infection and another long spell in hospital she turned to my father and said 'All my friends have gone. There's nobody in the street who I used to know anymore. I've had enough. I'd like to go now'...and she did. I don't want to go yet but I could do without watching the others leave.

*There's a lovely piece here about Kate's death with tributes from her children and sister

Happy New Year...bit late......

2010-01-03T20:39:00.004Z

'JoAnn always has a happy outlook...' and maybe we should try to be more like JoAnn..although there does seem to be a soupcon of mania on her face...or is it just an overdose of 1960s happy tabs ????

Valium anyone ?
Nardil ?
Purple Heart ?
She's a bit like a white Winifred Attwell on speed. No ? (If you're under 45 you probably don't know who Wini is but you can always google)

Anyway, I hope you'll all have a happy and healthier 2010 and, who knows, by next January we may all be as full of vim as JoAnn, God bless her..and you

Merry Christmas

2009-12-22T19:54:00.003Z

Usually I don't like Judy Garland. The voice is to shrill, the sentiment too overbearing and the fragility too real. The Rescuer in me feels I must stand by the speakers with a bucket to catch the tears, an arm to wrap round her shoulder and a soothing balm.

In the case of this song I feel differently. In many ways this is one of the very few Christmas songs I really like --- apart from some ancient and traditional carols. This song speaks of a reality to me: the bitter sweet nature of Christmas with all the fun and festivity against a backdrop of memories, good and bad, happy and sad; the people there and the people missing --- lost from our lives through bad judgement, lack of care, happenstance or death.

There's a terrible poignancy about this song for me and only Judy's version does it justice -- not because of her own pain per se but because of that tremulous timbre and because of the pain and experience that informs it. I also love the images in the video. Judy never looked more like a painting --- a construct of some Director's dream and the artful attention of the studio make-up artists, lighting director and costume designer. The little girl is just the right side of mawkish for me. Now and then even I can do 'mawk'.

So here's wishing you, whoever you are, blogging chum or new arrival --- a Merry Little Christmas. For many of us I know it has been a year of struggle. Here's hoping that 2010 will be better brighter and full of good cheer.

Snow !

2009-12-18T17:04:00.001Z

Christmas has come early to Suffolk. We woke up this morning to find the village transformed into (cliche alert!) a Winter Wonderland. The childrens' schools were closed and so its been a day of snowman making, snow angels and cold, cold hands with intermittent forays indoors for hot drinks and hot food and hot water bottles.

Of course, as usual, U.K. is rubbish at organisation and foresight when it comes to such lovely weather. It's as if the powers-that-be forget each year that in the wintertime it sometimes SNOWS !! Last night saw broken down lorries and cars on 'A' roads hereabouts. There was no gritting beforehand. Some people were stranded on the Orwell Bridge (the River Orwell runs through Ipswich to the sea at Felixstowe and Harwich) from about 9 p.m. last night until they were freed at 6 a.m. this morning.

Still, it's everso Christmassey isn't it and it is the best kind of snow too: really lovely and soft and with a bit of sunshine in clear blue skies. More snow forecast for this evening and tomorrow too I think.

Fund Raiser for severely affected Suffolk woman.

2009-12-15T09:49:00.005Z

I really hate it when people who are suffering, ill or in need have to tout their stories round and almost beg in order to raise sufficient funds for treament or resources which might imporve their life. Only a few doors away we have a young man with Cerebal Palsy whose family must tout his story and arrange gigs in local pubs in order to try and raise funds for a special wheelchair which will improve his life no end.

Yesterday I was alerted to the story of a young woman who lives a few miles away from me and who is very severely affected by M.E. and bedbound. Jenny Rowbory became ill with ME in 2004 at the age of 18 when she contracted a virus during the first term of her course at University where she was studying medicine.

Recently she attended the Breakspear Hospital in Hemel Hempstead where a treatment programme was drawn up for her. The cost of the 12 week treatment plan is £35,000. NHS funding was applied for but rejected. Jenny has written a poetry book 'Rainbows in my Eyes' and is selling it to try and raise the funds needed to pay for her treatment. You can go to her website to read more about her story and buy the book. You can also donate additional funds.

For Ruth: Silver Threads and Golden Needles

2009-12-08T14:12:00.003Z

Here's Dusty again. You'll be getting sick of her if you're not keen but I love her and always have. I'm putting this one up for my new blogging chum Ruth who liked the last video.

Today I'm looking after a recuperating son: small op. yesterday and third visit to hospital since last Friday. The patient is sitting up and taking notice and we are enjoying ;O) all the re-runs of 'Heartbeat' and 'On the Buses' and other daytime telly that I never usually watch. We are also enjoying plenty of Playstation. The boy is incredibly hungry (a good sign) so I am also on frequent snack duty and hot water bottle duty and all the other duties that are part of the convalescent's requirements. We are trying for recovery by Thursday so we can attend the School Carol Concert Dress Rehearsal.

I shall stop here because the bird in the nest has his beak open again and my laptop is playing up yet again --- on its last legs and driving me crazy with all its idiosyncrasies.

* BTW I am being plagued by all sorts of comments from strangers hither and yon offering me no end of strange medicaments for sexual prowess, money making schemes and no end of other stuff I do not want or care to know about. Does anyone know how to deter such miscreants and turn them away ?

Island of Dreams

2009-12-04T13:15:00.002Z

A very young and carefully enunciated Dusty...bless her cotton socks .

'Island of Dreams'....what a beautiful image

Music For A Found Harmonium

2009-09-20T19:55:00.001+01:00

Oooohh I love this

Wot I dun on my 'oleedays

2009-09-14T19:18:00.006+01:00

Here I am again ! Cooeeeeee! Over here..the one with the slightly askew demeanour and slightly careworn appearance. That's what a 7 week school holiday break can do for you. Yes that is correct dear reader: I did say SEVEN weeks. Much as I love my children, seven weeks is a long time to fill and seems longer when you're not particularly chipper. There were ups and there were downs and at times it was a real struggle but I'm still here and ready for another day.

We made cakes, we decorated furniture, we went to fetes, we helped at fetes, we bought a lovely swing seat and we avoided, cursed and annihilated a lot of wasps (what good are they ?? ..hateful beasts). I managed to make it to two of the four wedding receptions to which we were invited and we had friends round for Sunday lunch.

I also cursed this wretched illness, cried and swore because I couldn't do many of the other things I longed to do with the children and never made it to the seaside which is only 15 miles away.

I did manage to get to the doctors to verify that I am not diabetic (though it is borderline), got my eyes tested and had a crown fall off whilst chewing a vitamin --- s*d's law ! These might seem small things to many people but they were on a list of things to do and at least I achieved them. You have to look at the positives.

And now we're back to the old routine with children at school, partner at work some days and me trying hard not to give into feelings of ill health and unsteadiness so that I can do the things that need doing and do some things which bring pleasure.

I've realised that since the relapse at the beginning of the year I have taken quite a downturn and lost confidence. Some of the feelings of ill health are in fact feelings of anxiety: fear of what will happen when I try to do something simple like going to buy a pint of milk at our local store (a five minute drive). These are not panic attacks but simple fear about what will happen based on other real incidents when I've felt genuinely faint or sick or giddy. I have to overcome these feelings or I shall sink further into the mire. I just can't do that.

My doctor is still pushing me to take the anti-depressants. I still hesitate. I have been trying everything I can to avoid taking them: will power, herbal stuff, EFT, positive affirmations, homeopathy. I am doing more and I am winning but it's a real struggle and I sense that I am weaker than I was before the relapse but I will not be beaten.

There have been other aspects of self-discovery but that will have to wait for another post.

For now I battle on and I'm trying to re-establish some kind of routine so I am more involved with the day-to-day e.g I had had to give up collecting my daughter from school but now I go however I feel. I'm hoping that gradually I shall get back to where I was a year ago. That wasn't exactly Olympian athlete standard (ha! ha! ) but I was more out in the world and less fearful of how I'd be from day to day because there was more constancy.

The past few months have been more of a roller coaster; having no idea how I'll be from day to day or even within a day. I have to admit that the uncertainty and extremes have got me down of late...and watching my partner and children being able to go off and do things I cannot this summer has really brought home to me how much I miss.

Maybe that was a good point about the Sertraline: that it 'took the edge off' as my GP said and I didn't realise the reality or severity of what was going on.

I do now.

Do I want to ? I don't know really but having now known it I cannot un-know it and even with Sertraline the knowledge will not evaporate.

I'm stuck and I'm sick of the struggle but I will come out of it....eventually.

In the meantime enjoy this lovely Gigliola Cinquetti song ' I Have Too Tender a Heart'.
Sometimes it feels just like that

Non ho l'eta - Gigliola Cinquetti

2009-08-07T16:03:00.001+01:00

Who said nothing good ever came out of Eurovision ?

Stevie Wonder-Never dreamed you'd leave in summer

2009-07-27T19:34:00.001+01:00

Not much time or energy to post in the summer holidays but I do have time to share some of my favourite songs.

I've loved this Steveie Wonder track for years. I used to have it on an old Stevie compilation album in the 70s and played it repeatedly.

I was reminded of this song because Stevie Wonder sang it at Michael Jackson's Memorial and even though I watched the whole 'circus' of Jackson's funeral with cycnicism, watching Stevie struggling to get through such a poignant song at what was, for him, a very emotional situation, brought a lump to my throat.

Gladys Kinight and the Pips: Walk in my shoes

2009-07-20T12:13:00.001+01:00

Time for a lighter post. Sad sentiments in the song but my oh my what a voice Gladys Knight has and what passion! I can never listen to this just once.

'It's all we've got' he says.

2009-07-10T15:57:00.004+01:00

Why is it that there seem to be so few doctors who will a) look at the whole picture b) enable patients to try treatments other than those which they (the doctors) specifically agree with ?

These questions and others are the result of the first appointment I have had with my GP for eight months.

As I've said before he is a lovely chap: quiet, sensitive, (appears to be) listening, calm and friendly BUT he is not pro-active.

In all honesty I only went to see him because my Pensions Company have sent me the usual 6 monthly 'greeting card' asking how I'm getting on, will I return to work soon ? have I done any trampolining/ sky diving/ pot-holing ? do I intend to make a trip anytime soon to any part of Africa on a mercy mission for a charity and transporting myself there on a unicycle ? The answer to all the above is, of course, 'No.....I have not , cannot and its very unlikely I shall be involved in any such activities for the foreseeable future.' Still they have to ask and then when they have asked they double check that I'm not capable of work etc. etc. by asking my GP and asking him to complete another form --- which, if I ask ever so nicely, I can see before he sends it off....so I do because I want to know what's being said about me. Except that for the past 7 or 8 months I haven't bothered to see him because he's ineffectual and in the past 6 months I've felt like death so haven't been able to get to the surgery: all our conversations have been by phone. Every symptom I've had has been put down to M.E. or fatigue or anxiety.

Four days ago I finally went to see him and the form. I felt like death warmed up but I had to go no matter what (the form was going to be sent off the next day whatever happened). The form was fine(ish) ..he hates them as much as me and puts as little information as possible. The meeting was warm and friendly as usual but nothing ever shifts. We never move beyond the third place on the game's board. That's why I rarely see him. It's like a stale relationship where there's nothing left to say.

I went through the past 6 months -- so he knew what its really been like and can put it on the form --- and told him all the gory details. I asked him about the recommendations of Dr Myhill (B12 injections, more thyroid tests), the hypoglycemia ---which he insists is not hypoglycemia but fatigue and weakness --- the upset stomach and about all the talk about M.E. maybe being related to health of the gut and the place of probiotics.

Everything was met with a negative response: 'No', 'It's not been proven', 'etc. etc..
All I was offered was SSRIs (anti-depressants) - the same ones I weaned myself off last year.
I was offered (and reluctanatly accepted) them eight years ago and I'm being offered them again now because they apparently help with IBS, sleep patterns, anxiety: so not especially because of any depression. Although it has to be said that after the past 6 months I've got a bloody right o be depressed ---well more pissed off really and angry and frustrated. Still the pills are his answer --- to everything.

'It's all we've got' he says.

It's all we've got. Is it ? What about all the other stuff I just mentioned that you've just dismissed ? What about taking a chance to see if any of them might make me a bit better. I can't access any of those treatments without a GP's agreement so I'm stuck ......and I'm sick of it.

The last six months have been a total wash out. I'm nearly as far back as I was eight years ago.
Every day is a struggle and when I try to get out and about it's hell. Every trip, every journey is torture because moving and traveling is so hard for me. My memory is shot. My ability to talk for any length of time, to be creative (even if it's only bloody sock monkeys and fairy cakes) is gone and the blood sugar problems , orthostatic intolerance, fatigue, problems with sight and hearing continue and I'm sick of it. I'm even too unwell to get to my Reiki healer or to the osteopath. I've given up so much these past eight years and spent so much money on vitamins, herbs, consultations and I'm still stuck here ploughing on with no real medical support. It's all hit and miss.

Maybe the slow decline over the past nine months is down to lack of Sertraline. Maybe if I start taking them again it'll all come right (yeah right !!!) or maybe it's coincidence and I'll stay the same as I am until fate decides I should get a bit better and then I'll be on bloody anti-depressants as well.......but what other option do I have when there are no other doctors about who have a more adventurous approach. I've asked around about other GPs in the practice and other surgeries too and nobody knows of anyone better. So it's better the devil.......and I fell I should just roll over and take the tablets like a good patient. Maybe he's right

In the meantime there is talk that there is a specific probiotic which may be very helpful to people with M.E. (see links in last post) : only available in America but, as it's my birthday soon, I have decided to spend $77 on myself and have some shipped over in the hope that it may move things on a tad.

Any port in a storm

2009-07-08T12:13:00.003+01:00

M.E. Haiku

Fly in a glass jar
Always looking at the world
E'er at one remove

I decided not to bother with the test. As it turned out my computer went wrong and then the printer; meaning that first I couldn't receive the email with the order form and then when I could I couldn't print it off. Sometimes these things are meant to be.

In the meantime, other people had ordered, received and taken their tests and many had ordered two so that they could take one and give the other to their 'control' who was healthy. Often the results came out exactly the same e.g. the woman who is severely affected and her husband who is a mad-fit sportsman who can cycle 100 miles in a day. I thought 'I shan't bother' --- mind you that's becoming a running theme at the moment if I'm not careful: too many hills to climb.

On the bright side I've saved myself €15/£13. Also, there is still interesting research and talk about possible connections between M.E. (and other conditions) and the state of the intestinal flora. You might like to have a look at this and this if that's your bag.

I might try to get hold of the recommended probiotics and see if it helps: any port in a storm.

It's all a load of p*ss !...or is it ?

2009-06-01T14:35:00.003+01:00

There's another whiff of (mild) excitement on the M.E. front for a Belgian doctor has developed a urine test for M.E./CFS. It's cheap (£15) and available from today.

Of course there's also much scepticism for we PWME'rs have heard all sorts before but, heh, the theory makes some sense and for £15 and a quick whizz I'll take a chance.

I've heard so much piss in the wind about this condition over 35 years that this can't be any worse and it's not painful.

If you want to know more there's a good article in today's Telegraph.

If you want to order the test go here

Dolls to Nicaragua

2009-05-27T11:40:00.004+01:00

If you've a mind, you might like to mosey on over to CraftHope.com.

It's a site about a web-based project encouraging people to make items for disadvantaged and children. The current project is about making rag dolls for children who live in an orphanage in Nicaragua.

I made this oneAl the dolls had to have brown skin, brown eyes and black or brown hair so that they resemble the children who will 'adopt' them. I didn't have any brown material to hand so I dyed some calico with coffee and vanilla. She's got black wool hair from some boucle wool I had over so I made them into a pony tail which looks kind of dread-locky. She's not perfect but Craft Hope isn't looking for perfection --- just simple items made with love.. In the past they've needed clothes.

I think it's a lovely idea and even though I had to send the doll to the US for shipping off to Nicaragua it only cost £2.50

If you've time and a needle and thread go and take a look.

Life's little trials and tribulations

2009-05-18T10:59:00.015+01:00

It's been an eventful few days and I feel like I am being tested and coached through life's little hurdles.

The first event relates to TDS (The Dental Saga). For a couple of weeks, one of the teeth that needs removing has been grumbling away and giving me real 'gip' with pain not only in that tooth but into my sinuses and jaw. You'll remember that last month I received the news that my dentist said she could not deal with all my medical issues and was going to refer me to hospital...so I was trying to stall the tooth problem with Ibuprofen and homeopathic remedies.

Last Wednesday I could stand it no longer. I had managed to struggle to my son's school to see him in the Summer Term play and in the midst of Act Two my tooth decided to launch into a real attack to the point where I felt physically sick --bastard tooth ! I was pretty wiped out by the whole experience but after a lot more Ibuprofen I got through another day of waiting and hoping the whole thing would go away. Stupid Cusp ! Got worse and I was forced to confront the issue so that late Thursday afternoon I found myself phoning the dentist and asking for an emergency appointment. Friday afternoon was the appointed hour.

I knew that Conscious Sedation was not going to be an option because
a) I am unable to comply with the two hour fasting rule and
b) that treatment option needs to be pre-planned...so I was just going to have to tough it out.

Cue sleepless Thursday night and much resting Friday morning.

Friday afternoon came and off we went --my partner driving us there because I knew I would need to be driven home. This isn't any old tooth ---it's a nice big fat lower 7 (the one before the wisdom). Very scared and brave Cusp enters room and (to spare you the gory details) emerges rather wobbly 30 minutes later 'sans' tooth.

I am now rather sore and a bit bruised but also rather proud of myself. Unfortunately at some point I shall have to go through the same process twice more but at least I have managed to get to the dentist and have the offending item removed. It can only be good for my general health and I am resting as much as possible in order to try and stave off any ill effects.

The second event is more about the flow of life's river really and the trials and test that confront you once you have children. Today my youngest (who is nearly 11) left for 5 days to go on a school trip to the far north-east coast.

She will be hundreds of miles away (further than France ..as one helpful teacher pointed out) and not back until Friday evening. She is nervous but incredibly excited and looking forward to what will be a fantastic break after all the hard work of the past months for the dreaded SATS which she took last week. I have been anticipating and dreading it for weeks. I have not been really able to think about it without tears coming to my eyes.

has been away before...sleep overs and even for 3 days when she was Year 4 (two years ago) but not so far. She is at a point in her little life where she is on the cusp (!) between childhood and teenage years but in many ways she is still a little girl and she is my baby. It breaks my heart to put her in the care of strangers for five days and let her,what seems, so far away --especially when we have been specifically told not to contact the children unless it is an absolute emergency because to do so only increases the risk of them getting homesick. This is sensible stuff and I know this is another step in letting her go into the big wide world. She must go and I must let her spread her wings and face all the joys and tribulations of living her own life. In years to come there will be a trip further away, University, making her own home, finding a partner......and this is part of the process.

I know she'll find it hard at times and I am reminded of myself at almost exactly the same age going on a school trip to Scandinavia on a ship for 10 days. No mobiles, no letters, no phone calls in 1967....we got on the ship at Tilbury and were gone. As a parent now I can see how hard it must have been for my parents and grandmother to let me go. They were going through what I must go through now.

I can still see them waving me off...smiling and then probably getting back for a good old weep in the Austin as it made its way home. I wrote about that trip once before. I remember the hard bits, the homesickness, the homesickness of other children and feeling so, so far way from home bobbing about on the North Sea in April and seeing seals and dolphins and fjords and the lovely Norwegian people.......so warm and friendly. I remember it all in such detail and despite the difficulties I remember all the good bits too and that's how it will be for my daughter...a lesson in how to survive and be alone, being independent, enjoying self-reliance and savouring the good times.

She'd better send me a postcard , God love her !! ;0)

Eurovision: Apres Toi ~ Vicki Leandros

2009-05-15T19:11:00.002+01:00

As it's Eurovision weekend I thought I'd post up a song from 1972 sung by wonderful Vicki Leandros.

Just shows how the the quality of the songs has deteriorated over the years. Last night I was up at 2 a.m. and came across the semi final of this year's spectacle in Moscow. Never have I seen such a load of old codswallop (well I have but only on Eurovision over the past 15 years or so). It seems they now try to make up for the lack of songwriting quality by wearing funny costumes and having acrobats twirling round or skaters skating or strange oversized props.

Blogging for M.E. Awareness Day: Just keeping in Touch

2009-05-12T06:52:00.003+01:00

Hello my dear,

You've been so busy lately. Searching everywhere for something.

I'm not sure what it is you're hoping to find but I doubt you'll find it anyway. Sorry I don't have any clues for your search. Still, I am sorry that all your efforts have kept us apart. I enjoy our little conversations:it's really not the same when you pretend to only pay me scant attention.
After all you know I'm never very far away.

I like to keep in touch and I'm always here

should you find the need to talk

feel my prescence

the touch of my hand.

You and I have been through so much together.

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

Do you remember when we first met ?

You were only 18: your whole life before you.
You thought a few days, even weeks off school might be quite nice: a chance to duck the pressure of 'A' levels and the relentless monotony of school.

Bet you never thought we'd form such a close bond and I'd still be around when you're in your fifties.

Of course, the irony is that whilst you continue to age, I never grow old really.
You grow older and less strong. I remain vigorous and able to maintain my grip.

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

I want you to know that despite what other people might say I really do enjoy watching you go out.
You go ! I'm not stopping you.
I'm only just around the corner anyway and you know I'll be here at home when you get back.
I wouldn't want you to be lonely
Just so long as you tell me where you're going,
how long you think you'll be,
who you'll be with.

I wouldn't want to lose you, now would I ?

We wouldn't want to lose each other.

I'd be lost without you and you wouldn't know where to start without me after so long.

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

Oh, by the way, I noticed that you've been taking those tablets again.

Who sold you those then ? ...................that person in the health shop ?

I don't think we should trust her.

She's very nice...well meaning, but honestly she'll only come between us.

I don't think she likes me. Can't think why.........

__________________
No.
I've decided.
I don't want you to see her anymore.
She's trouble

.........and that doctor who told you to rest up in the day: resting will do you no good.
You should just plough on with whatever it is you want to do.

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

What's that ?

But you get so tired........exhausted ?
Your muscles get all achey and you can't think straight ?
You feel all confused and foggy ?

You're imagining it.

It's all in your head.

You're neurotic.

The trouble with you is you're weak; don't know your own mind

That's what I mean when I tell you to rely on me.
I can be strong when you are weak. I'll be your rock.

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

I do know better, really I do ...for all the right reasons.
I know what you need better than you do yourself.
You know you can rely on me...even when other people have let you down
Haven't I always been there for you ?
I keep my promises.

Look what happens when you've tried to go it alone, when you've listened to all those experts, all those people who say they can help you: you're lost.
You need to pay attention to me.
Even when you think I've done something to you or for you that's bad (as you see it)
it's only because I love you,
because of this strong bond we've developed over all these years.

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

If you'd only stay close by none of this trouble would happen.
You're always trying to give me the slip.

Don't think I don't know, don't see what you're up to. You want to get away from me.
I've told you before we're good for each other. We need to stay close.

I was made for you.
We were made for each other...hand in glove.
Together forever.

Don't disappoint me by trying to escape.
I've given you everything you have.
That's why I feel so hurt when you want to see other people,
do other things,
spend proper time with your family.

It's only because I love you...you do see that don't you ?

Don't go off again looking for something better.
It's not out there anyway.
Those other people are charlatans set on breaking us up.

Better to stay here with me.
We know each other so well.

All that stuff outside....not a patch on what we've got.
Stay here and I'll never leave you.
Nobody knows you like I do.

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

What's that they say ?

'Better the devil you know.'

Well I'm not exactly a devil am I?

You know who I am.....just myself...just ME

If you haven't read the post below please do.
Yet another person with M.E. has been sectioned under the Mental Health Act.
I cannot tell you how much this angers and saddens me.

Brain Nicholson: another person with M.E. sectioned under the Mental Health Act

2009-05-11T15:17:00.004+01:00

As we are about to go into ME Awareness Week you might like to be aware and spare a thought for poor Brian Nicholson who has been sectioned under the mental health act for delusional illness beliefs in relation to ME.

Brian also has POTS and it seems that, having failed to gain proper medical help and treatment, he was effectively abandoned by medical professionals. Brian then tried to help himself by upping his intake of water (which is partly helpful for people with POTS). It was then thought that the amount of water he was drinking was dangerously high and warranted a diagnosis of abnormal illness belief and subsequently sectioning under the Mental Health Act

What an appalling state of affairs. Pray to God he doesn't end up like poor Sophia Mirza

If you want to know more about Brian, support him and let him know you are thinking of him visit the Support group at Facebook

Sometimes the psychiatric profession have a lot to answer for with their imperious manner and delusional belief in complete and infallibele judgement.

Awful or not ?: Tina Charles - I Love To Love (1976)

2009-05-06T12:04:00.001+01:00

Part of me thinks I really should regard this as awful old schlock because it's so repetitive and because of Tina's hard voice but I still love it for all the memories of warm summers and nearly falling off my platforms when I was going out on the town in the 70s.

Happy Times and a happy song

Awful Songs No. ? lost count :Jeane Manson - Roses of Picardy

2009-04-24T15:25:00.004+01:00

Aha....caught you ! Just when you thought it was safe and I'd forgotten my thread about awful songs I decided to reawaken the beast.

I absolutely detest this song. That's probably more to do with memories of it on a school trip (and, no,even though it's a very old song I wasn't at school in 1909 ). There's just something about it that grates.

Now I WAS going to treat you to the Vince Hill version ('Edelweis's is another pet hate...especially his version) but that little gem is now off YouTube: perhaps the nice people at YouTube decided it was kinder to spare their customers such a vile and hideous rendition.

Anyroadup...I then came upon this version which is altogether more awful for not only have they chosen a dreadful tune but they have then given it
a) the whole 70s disco-y treatment and
b) given that treatment a kind of sickly ickly makeover in a way that only the french know how when they do their own version of Variety. One day I'll treat you to a Claude Francois video, if you're very good, and you'll see what I mean

Oh you lucky people ! Wherelse could you find such schlock !

Enjoy !

(Don't you just love those poor herberts prancing about at the back of Ms. Manson: camp as a row of tents)

Properly stuffed now !

2009-04-19T20:08:00.006+01:00

Warning ! This post has been written in a spirit of exasperation, anger and general fed-upness. There may well be words contained therein which could offend the meek and gentle. I don't feel meek or gentle at the moment so if you possess and exude such qualities, please desist from reading the post below as you may be offended by 'language'.

If you have been dropping by for some little while you may remember the ongoing saga with the old gnashers. Bloody Teeth !

Amongst the notsofragrant days of recent past there have been my rather pathetic and inept attempts to have three teeth removed

No, Silly, not removing them myself, though that might be one solution --but to get myself to a dentist who will remove them for me.

Now for anybody else, the removal of teeth may be daunting but not terribly complicated. For the person with M.E. it is not so straightforward. Nothing ever bloody is for the person with M.E.

After much soul-searching and trepidation I did get myself to the dentist in November to ask eversonicely if she could accommodate a poor quaking soul such as I (who doesn't like dentists at the best of times) and remove said offending gnashers -- but gently and nicely. After some discussion it was agreed that the probable best course was to put me in a dreamlike state known as Conscious Sedation and a date was set for February.

December came and went and likewise January.

Cusp was poorly and not well at all -- certainly not well enough to have gnashers ripped out --dreamlike state or not.

A new date was set for March.

By this time Cusp was a little better but having all sorts of complicated symptoms thanks to low blood sugar and having to eat every hour and nothing too sweet or carb-y. The useless doctor refused point blank to bandy words like 'hypoglycemia' or to offer any help so it was up to me to try and sort it on my ownsome.

And then .......it was at this point that the nice dentist let slip that actually you had to fast for two hours before having the nice dreamy drug prior to removal of teeth. She had not mentioned any of this in November.

Cusp was cross and felt led astray with a false promise.

This was a great blow for I had put a lot of faith in this modus operandi for extraction. The new morsel of information which she had forgotten to impart made me think that all was lost:
there was no way I could fast for two hours before she set about me plus fast for another hour or two whilst she extracted and I came round and got home
.....so I cancelled at the last minute and she was everso cross but courteous

(Do you think dentist have a special ability to speak nicely through very white and perfect gritted teeth ?)

I wrote a very apologetic letter and said maybe we could think of another way ---- even including me being everso, everso brave and 'just' having a local anaesthetic and her pulling the nasty buggers: thus no fasting just courage (Mon Brave )

I have waited a month now and yesterday morning I received a letter in reply saying she likes me everso much but really I'm just too bloody complicated and difficult to contend with health-wise so please can she shake me off her books and refer me to the hospital.

I think that may be a caring way (and she is caring) of saying 'Sod off, you're just too much trouble and you keep cancelling and wasting my time and money'. Fair enough really. I'm sure the likes of PWME are a nightmare for the dental and medical profession.

To her way of thinking hospital referral seems my best solution. For me it is all the more terrifying for you see, dear reader, hospital probably means general anaesthetic and PWME don't want to touch GAs with a bargepole as they have the potential for spelling BIG TROUBLE :long, long recovery, relapse and all sorts of nasties; especially if you are already trying to climb the slippery slope up from a relapse already ......like moi.

So....proper stuffed now

....and what do I do ?

....No idea.

I have written to the dentist again asking if she might refer me to the Community Dental Team who deal with all manner of complicated buggers like me on a daily basis.

Will they have any idea about what to do with me ?

Probably not but it's worth a try

What a mess

OH, I WISH I'D LOOKED AFTER MY TEETH
by
Pam Ayres

Oh, I wish I'd looked after me teeth,
And spotted the perils beneath,
All the toffees I chewed,
And the sweet sticky food,
Oh, I wish I'd looked after me teeth.

I wish I'd been that much more willin'
When I had more tooth there than fillin'
To pass up gobstoppers,
From respect to me choppers
And to buy something else with me shillin'.

When I think of the lollies I licked,
And the liquorice allsorts I picked,
Sherbet dabs, big and little,
All that hard peanut brittle,
My conscience gets horribly pricked.

My Mother, she told me no end,
"If you got a tooth, you got a friend"
I was young then, and careless,
My toothbrush was hairless,
I never had much time to spend.

Oh I showed them the toothpaste all right,
I flashed it about late at night,
But up-and-down brushin'
And pokin' and fussin'
Didn't seem worth the time... I could bite!

If I'd known I was paving the way,
To cavities, caps and decay,
The murder of fiIlin's
Injections and drillin's
I'd have thrown all me sherbet away.

So I lay in the old dentist's chair,
And I gaze up his nose in despair,
And his drill it do whine,
In these molars of mine,
"Two amalgum," he'll say, "for in there."

How I laughed at my Mother's false teeth,
As they foamed in the waters beneath,
But now comes the reckonin'
It's me they are beckonin'
Oh, I wish I'd looked after me teeth.

2009-04-10T15:20:00.005+01:00

HAPPY EASTER

I hope you all have a lovely peaceful, warm Easter full of chocolate

Many thanks for all your messages of positive encouragement.

They mean a lot to me

I am getting there but slowly

*********

Little signs of hope in a pinched existence

2009-03-27T09:45:00.005Z

Daffodils courtesy of http://www.freefoto.com

Today my Mum would have been 85. She died five years ago. I wish she was still here to talk to. I miss her and I especially miss her when going through a rough patch such as the one which seems reluctant to let go of me since the New Year.

I'm still here and struggling to get everything done that has to be done and, in the present situation, that means there's little left for 'niceties' like writing the blog and following other blogs. I know this is wrong. I know that I should make time for the little things that cheer in order to take the strain off the rest of the load but it just don't seem possible: I'm either doing what has to be done or in bed.

I hate this pinched existence and I'm trying desperately to make up lost ground. I miss you all and miss the interactivity and random relationships of blog-world but even the computer seems against me --- all sorts of problems and then wretched Blogger/Google decided to lock me out earlier in the week by refusing to accept the password I have had and has been accepted for over a year so that I couldn't even leave comments on others blogs.

Today the sun is shining and the daffodils are coming up --- little signs of hope.

Great Dusty Song

2009-03-05T12:05:00.003Z

I've been listening to quite a lot of Dusty the last few days and rediscovered a great story song she did in the 70s. It's not well known at all but it conjures up all sorts of images and plots for me.To me it's very filmic.

No videos on YouTube but you can hear it on Last FM.

here

Only but not alone

2009-03-04T09:53:00.004Z

It's all anniversaries at the moment. Five years ago today my mother died. All those months of hospital appointments, hospice visits, arrangements for carers, nurses...all the conversations on the phone. All the times I cursed my own ill health for obstructing me from visiting, supporting as much as I wanted and needed to...and the suddenly it was all over. She had gone. I'd done my best and now it was time to tidy up. put things in order, say goodbye and move forward.

I'm not sad today...just recognising a passing. My mother spent much of her life in ill health but she always got back up and moved forward. She was gentle and kind. I give thanks that I was blessed with such loving parents. Being an only child makes you closer still and my mother was an 'only' too. Now she's gone there is no Cusp family from before...only the one here now --- me, my partner and our two children. I see my mother in my daughter...her eyes, her shyness, her sense of humour, her creativity and I know that, whatever the truth about life, death, God that we all live on in our children and our children's children.

Dusty Springfield 16.4.39 - 2.3.99

2009-03-02T14:29:00.002Z

Ten years since Dusty died: my favourite singer and, close to my heart for all sorts of reasons, her songs are part of the soundtrack to my life.

Dusty was a pioneer of white soul, a brilliant interpreter of songs by Bacharach, Randy Newman, Jacques Brel and many of the other best song writers of that era -- Mann & Weil, Goffin & King. She could sing ballads, country, soul, folk and pop and suffuse any song with real emotion and her own individual ‘take’: she always gave her all.

Dusty was often seen as just another 60s girl singer in the line with Lulu, Sandie and Cilla but she fought hard for the integrity of her work and, although she was given no credit at the time, she in fact produced and co-produced many of her songs. She strived to reproduce an authentic soul sound in studios peopled by old fashioned musicians more used to backing Cliff or Adam Faith. Her feistiness and perfectionism often led to accusations of tyrannical behaviour but she knew what worked, wanted the best and wouldn’t be satisfied until she got it.

Dusty lauded and promoted Motown in the UK. After the disastrous Motown UK ‘Ghost Tour’ (so called because hardly anyone came to the concerts) she fought hard to ensure that authentic performances of Motown music were heard by more people in the UK and that Motown artists were properly recognised. Most people in the UK only knew that music through the tepid interpretations of home grown groups like The Beatles and The Stones. With Dusty’s backing and persuasion the Ready Steady Go Motown Special was brought to ITV. Almost certainly, without her backing it would probably never have happened but thanks to her the wonderful joyful sound of acts like Martha and the Vandellas, The Supremes, Four Tops etc became more widely heard and appreciated.

Partly on the back of making her 1969 classic album ‘Dusty in Memphis’, where she worked with the same musicians and producers as Aretha, Dusty moved to the US and more or less stayed there until the mid 80s. Life in the US was tough and she had a hard time emotionally, spiritually and financially. Lack of self confidence and never being able to accept that what she created was good enough led to all sorts of difficulties but gradually she pulled through. In the 80s she found renewed success with the Pet Shop Boys and moved home to the UK.

Finally in the 90s her real talent and achievements were recognised but she became ill with breast cancer and finally succumbed to the disease in 1999. She died on the day she had been due to go to Buckingham Palace to receive her OBE. Officials of St James’s Palace gave permission for the medal to be collected by Springfield's manager, Vicki Wickham, who presented it to Dusty in hospital.

Her death really affected me: not because I am an obsessive fan but because I had followed her from childhood and so many of her songs are connected to key moments in my life. She was creative, talented, rebellious, principled, funny and generous. I never met her. She died ten days after my father. I miss them both.

Here’s a lovely clip from the RSG Motown Special of Dusty singing with Martha and the Vandellas who were already close friends

Some links to other tributes:

Pop Junkie

The Wild Reed

The Music's Over

Dusty Springfield Network

Liza Minelli and Pet Shop Boys: Losing My Mind

2009-02-20T10:24:00.001Z

Glad to see the PSB doing so well at The Brits. I love their witty and rather sour lyrics from the 80s. This is a cover of Stephen Sondheim song. Not always sure about Liza but her 'on the edge' nutiness seesm just right for this song and interpretation

Blossom Dearie - Quiet Nights

2009-02-11T12:59:00.001Z

Judicicial Review of NICE guidelines for M.E.

2009-02-11T12:44:00.003Z

Not well at the moment and it seems that all progress has gone in reverse.

Maybe this will change things ...though I doubt it: too many vested interests and political shenanigans around M.E. to give me much hope.

Short and Fraser are brave men to try and have the NICE guidelines for M.E. overturned.

All power to those souls who can get to London to support them.

Tony Hart R.I.P.

2009-01-19T15:46:00.005Z

For those of us born in the 50s and 60s 'Vision On' was an essential part of teatime telly. I loved 'Vision On' because it was about art, creativity and it seemed very inclusive with warm and gentle presenters who weren't 'gung ho' or trendy but still encouraging. I loved the fact that the programme was signed for deaf children and the feeling that everybody was joining in. Although I loved art I was never brave enough to enter a picture for the hallowed 'Gallery' but I tried out the ideas and had all the annuals.

The mainstay of the programme was Tony Hart -- a quiet and seemingly modest uncle figure. He died yesterday and there are many tributes to him all over the Web. Recently I read an article about him in The Observer which mentioned that he had had two strokes over recent years which affected his ability to use his hands and to draw. On a day when I was regretting my own loss of past abilities, that thought brings me up short and makes me realise how lucky I am to have what I do have. His beloved wife had also died a few years ago and left him lonely and lost so I imagine that, from his point of view, his passing is a relief.

He has left a great legacy in terms of art, creativity and broadcasting. When I compare the programmes he appeared on with supposedly similar programmes for children now I know that something has been lost in the desperate desire to make children's' programming hip, cool and strident. The nearest equivalent we nearly had to Tony was Mark Speight who used to appear on 'SMART'. He too sadly died a few years back.

Children's' programme makers would be wise to look at these two sites (here and here) and reconsider how best to entertain and educate children in the future.

Thanks Tony.

Dreadful songs No. 6: Aneka - Japanese boy 1981

2009-01-18T14:23:00.001Z

Right gang, enough with the old moans and groans: time for something REALLY grim to moan about.

This is one of the most vile, bizarre 80s concoctions I can think of: a scottish woman dressed up like a cross between a tupperware-party-touting housewife and a geisha singing a song about a Japanese Boy in a nasal, vaguely Celtic accent whilst encapsulating almost every cliche about Japan you can think of....eventhe melody seems to have been written on all the blacknotes by a ten year old on one of those Bontempi organs for kiddies.

Can you tell I don't like it ?

You couldn't even dance to it as evidenced by all the nice neat couples SITTING DOWN as she warbles on.

Can't remember if she did another song after this travesty. Maybe she had a string of hits: Japanese Boy, Australasian Boy, Tyrolian Boy, French Boy, Dirty Boy, Naughty Boy...same song wit tweaked arrangement and she changed her costume and put in the odd national cliche on the backing track --- didgereedoo, alpine horn, accordian, damp flannel, sharp slap on the wrist.

Do you think she bought that indoor areial on her head from Argos ?

Snakes & Ladders

2009-01-16T09:42:00.006Z

Well, long time no see/hear/write and I feel like I have been neglecting this blog and you, dear reader.

It’s been nothing personal --- nothing you’ve done. I’m still very fond of you but circumstances have been against me for a while and I have had to concentrate upon those things which have to be done rather than those things which I’d like to do: like attend to my blog.

Before Christmas, partner was first told that hours would be reduced because of financial shortfall at employers :

Cue Famille Cusp shivering in dark corner wondering where the next scheckel will come from.

Shortly afterwards a number of employees cleared off saying they could not survive on reduced hours and had found alternative employ and then others were very poorly with the Christmas lurgy:

Cue partner not having reduced hours but increased hours and trying to fill in for the people who were no longer at work or able to get to work.

Cue Cusp trying to do all usual Cuspish chores-domestique plus many of the other things partner usually does.

Cue Tired Cusp and Failing Cusp and then Christmas.

Christmas passed by in an interesting manner. Baby Jesus hath smiled upon the Cusp Household in that we did not fall low in the face of the dreadful flu bug which seemed to beset all and sundry around and about us but son of Cusp did succumb to funny virus and infection in eye . The latter was very worrying since he is already visually impaired and has glaucoma.

Cue many trips to hospital and checks and drops and unguents.

All better now --- well nearly ----but it made for a quiet-ish Christmas with many trips up and down stairs with trays of food, providing company, watching videos, DVDs, PS2 games and many trips to hospital and calls to NHS Direct; not being sure if an array of symptoms were due to eye drops’ side effects or funny virus or both.

Cue Cusp and partner v.tired after Christmas

….and..breath….ahhhhhhhhhhhhhhhhhhhhhhhhhhhh ;0)

So that’s what I done in my holidays, innit, and now it is taking many a day to try and pull everything together again and feel like I have some control over the domestics and myself for I have not able to rely on my body (not that I EVER feel I can rely on it) for weeks.

When things are poodling along in their usual family-life kind of way it is relatively (and I say RELATIVELY) easy to try and fit my energy management regime around circumstances and stay on an evenish keel. I can more or less tell what I can manage and what I cannot. I can more or less tell how far I can push my limits without disaster. God knows I have had enough practice in managing what’s left of my energy. But when I am beset by unusual, unpredictable circumstances the whole thing goes to pot. I cannot rest when I need to. There are things that have to be done, people that have to be cared for, animals that have to be fed, cleaned out, walked. It’s no good taking on all the sensible advice about ignoring housework and only doing what you have to do because what has to be done in this house when unusual circumstances arise is more than I can really cope with but they have to be done.

And now there is beginning to be some semblance of the day-to-day routine that passes for normality Chez Cusp…and I am at sea: unable to get used to being alone again, occasionally liking the solitude and the next moment hating it, feeling as if I should be doing something productive but not knowing what and having a horrible feeling that life is passing me by, has passed me by.

….and breath…………………

Life is complicated and I am at that point (as is oft the case with PWME or any other chronic illness) where I could shake a fist at the sky and tell the whole damned thing to clear off, leave me alone, I’ve done my time, I’ve made my amends, done all the right things, listened to the advice, listened to the doctor, the healer, the insurance company and none of it has done any good. All that works is time passing and being careful and cautious and biding my time. I feel like I’m in some religious order locked away from the world. Maybe I should buy a habit ?

Rachel (The Creative One) sums up the dilemma very well:

‘Motivation is not an issue with this illness. Desire to do more, be more, is never a problem’

You progress, you want more, you do more, you wait, you wonder, you fall or carry on ….you’ve done more, you progress….but there’s always that hesitancy, that fear, that feeling of being unreliable to your self and to others so that you don’t feel able to jump back into the game.

As one of her commenters (Nina) puts it:

‘………you can’t be successful there unless you can continuously produce! I, too have gotten (what to me seems) much better, but when I’m in the real world, I realize it’s a relatively tiny improvement…’

And there’s the dilemma again for you can do all the right things but it’s never enough. The rest of the world moves too fast and unless you live on an island worldly matters impinge on your progress and you depend on the love and care of others to survive ---as we all do.

This ME life is one of snakes and ladders

Merry Christmas

2008-12-23T18:07:00.001Z

New Sock Monkey litter

2008-11-24T19:45:00.012Z

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

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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'

2008-11-18T20:16:00.001Z

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

2008-11-17T10:49:00.003Z

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

2008-11-12T20:40:00.010Z

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

2008-11-08T16:30:00.001Z

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

2008-11-04T12:32:00.003Z

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

2008-11-02T11:52:00.001Z

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

2008-10-24T16:10:00.001+01:00

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 ?

2008-10-22T19:13:00.006+01:00

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

2008-10-21T09:53:00.005+01:00

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

2008-10-19T16:26:00.001+01:00

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

2008-10-14T10:22:00.004+01:00

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

2008-10-09T11:30:00.001+01:00

Money: my least favourite subject

2008-10-09T11:08:00.004+01:00

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

2008-10-01T13:01:00.006+01:00

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

2008-09-23T10:57:00.005+01:00

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

2008-09-17T11:33:00.001+01:00

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

2008-08-19T19:16:00.001+01:00

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

There will be a short intermission

2008-08-16T21:39:00.001+01:00

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

2008-07-30T15:30:00.011+01:00

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.

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

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

2008-07-20T19:48:00.018+01:00

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

2008-07-11T11:51:00.006+01:00

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

2008-07-04T11:53:00.006+01:00

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

2008-07-01T10:48:00.004+01:00

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 !!!!!

I love to cry at weddings.......and laugh

2008-06-25T10:45:00.025+01:00

Slight change of direction in as much as this is an opportunity to look at other people's creativity
Last weekend our local village church had a 'Scarecrow Wedding' to raise funds. Various parishioners had made scarecrows which filled the church and grounds to enact a wedding.

At the gate a chimney sweep waited to greet visitors and at the porch a photographer was snapping away. The exhibition attendants had dressed appropriately in a lovely 'two piece' as the elderly lady called it and her husband was dressed in his best suit with a rose in his button hole.

The bride and groom waited at the altar

with the Vicar in attendance

and the Best Man to one side

other guests looked on proudly..........

a rather hirsute medallion man

a mother and baby

and her small daughter

Much to everyone's embarrassment Grandma seemed to have already made the most of the champers

The creativity, ingenuity and humour in all this work was lovely. I always enjoy such quintessentially English events. There's a gentleness and civility about the whole thing and they bring together a whole range of ages and aspects of a little community like ours. In addition there was tea and cakes and bric a brac ---- you already know my penchant for a bargain and a little Victorian gold broach, two hardback books and a nearly new Spirograph for daughter all at £1.50 hit the spot and I only had to travel 3 minutes drive away.

What more could you ask for ?

I know the layout of this post is dreadful but Blogger is playing me up endlessly today and I just don't have the enrgy to try and rectify it again: bloody Blogger !!!