Another year over

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

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

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

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

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

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

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 :

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

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

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

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

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

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

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

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

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

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......

'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

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 !

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.