Subscribe: L'Ombre de mon Ombre
http://lombredemonombre.blogspot.com/feeds/posts/default
Added By: Feedage Forager Feedage Grade B rated
Language: English
Tags:
ago  back  day  feel  health  home  ill  life  living  long  make  much  new  past  people  things  time  work  years 
Rate this Feed
Rate this feedRate this feedRate this feedRate this feedRate this feed
Rate this feed 1 starRate this feed 2 starRate this feed 3 starRate this feed 4 starRate this feed 5 star

Comments (0)

Feed Details and Statistics Feed Statistics
Preview: L'Ombre de mon Ombre

L'Ombre de mon Ombre



Living on the cusp



Updated: 2017-11-17T19:30:49.133+00:00

 



Bowie

2017-02-14T16:17:29.772+00:00

This post has been a while coming because the shock of hearing of Bowie’s death has taken time to sink in. He always seemed other-worldly and so it seemed he might be immortal. I suppose, in a way, his mark on popular culture has been so great that he (the artist) / his work will be immortal.Since Monday morning, a lot has been said about how Bowie offered up something to, in particular, people who were teenagers in the early and mid 70s. Most teenagers feel that they are ‘other’, misunderstood, different. They look for a connection, a reassurance that somebody out there understands.Ziggy was certainly ‘other’ in the early 70s. I don’t think that people who are now younger than, say, 50 can understand how extraordinary it was to see Bowie/Ziggy in 1972…and yet he seemed to offer a possibility that we might be able to follow. The make-up, costumes, theatricality seemed beyond what we knew in suburbia and the attitudes and imaginings in the lyrics spoke of things we’d never heard of or viewed with wonder or fear or derision – until Bowie offered them as another ‘way to be’ that was legitimate, possible, desirable. Yes, there were other bands with all the ‘glitter’ but they were mainly like run-of-the-mill 'blokes' dolled up for a laugh or the money. Bowie meant it. There was Roxy too …but they were so otherworldly, esoteric, mannered as to be almost scary and inaccessible: Manzanera’s fly specs, Eno’s strange Dr Strangelove-meets-the alien look and Ferry with his louche sneer. Bowie, by comparison, grinned in a way that said ‘I’ve got you…come to bed…'don’t laugh babe, it’ll be all right’'…and that was just to the boys. You somehow felt that Bowie would show you a world of mystery and wonder and take you to places you’d never imagined but had always longed for and you’d be safe in his amazing hands.’Oh no love, you're not aloneNo matter what or who you've beenNo matter when or where you've seenAll the knives seem to lacerate your brainI've had my share, I'll help you with the painYou're not alone..’ David Bowie - Rock 'n' Roll Suicide I was hooked. He’d shown me the way and made me realise that it was possible to escape suburbia and a grammar school education – even if it took me years to summon up the courage to make good that escape.  I could become a 'Kook' and be proud and unashamed.KooksSo what of my memories of Bowie ?I think the first time I really heard him was when I stayed with my older (and quite glamorous) cousin who had already seen Bowie perform and been asked backstage to meet him. We were driving home in her Daimler at night and she put Hunky Dory into the tape player. There were the opening chords of ‘Changes’ as I floated along in the back seat: stars and inky sky speeding past down dark wooded lanes and those tinkling piano notes ending the song as we pulled on to the motorway. It was like a dream.At school there was J who had her red hair dyed even more red and cut in an exact Ziggy 'do' and K and M who went to all the concerts and got to the front at The Rainbow and their friend Tommy who was devoted to Bowie and had a red sequin jacket which he wore to gigs. He was so scared his parents would find out about the jacket and the satin trousers he wore (and the eyeliner..and blush) that the jacket and schlapp had to be kept at a friend’s house in case his Mum or Dad found them.  The very idea of boys wearing make-up in the early 70s was outrageous, scary, and the idea of girls teetering along in their smock tops, platforms and ‘bippity boppity hats’ to see an androgynous seducer even more so. There was the Romford Odeon gig and then later a long relationship which is marked out by Bowie tracks from Hunky Dory all the way through to Lodger with it various sartorial influences – haircuts, jewellery, cigarettes I’d smoke, books I’d read because Bowie had mentioned them…..and the romance of serenading each other with ‘The Prettiest Star’ and the fantasy of having children and our lives being like the words of ‘[...]



In the Middle of Nowhere

2015-08-15T14:09:48.973+01:00

allowfullscreen="" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/X5xovVHU16I/0.jpg" frameborder="0" height="266" src="https://www.youtube.com/embed/X5xovVHU16I?feature=player_embedded" width="320">


I was going to write a (probably long) piece about how things are at the moment. As I contemplated what I was going to write this came on the radio. 
As usual Dusty puts it much more succinctly than me. Its strange how often she 'appears' when I am floundering. I've loved her music for so long it's as if there's a strange link *

So...nearly 60, M.E., Fibro....so many situations where we are waiting, hanging, floundering and have no real influence upon the outcome and for me the M.E. means I have no job, no money, no real say or influence so I sort of float along fitting round everyone else because they all have proper lives and I have even less influence.

In the Middle of Nowhere.

* ...and no I'm not some deluded weirdo who thinks I really have a psychic link with an old 60s pop star...it's just odd the way she pops up at unexpected moments when I'm floundering. Maybe I should take a leaf out of her book and smash some plates, fling some flans :)



A blast from the past

2015-06-19T07:47:12.036+01:00

A long long time since posting anything here. Life has been too busy and my health just doesn't seem to have picked up properly since a slump about a year ago. I have had to stop as much 'screen time' as possible and I am trying a new regime of homeopathic treatment which was recommended by a friend in the USA who I knew from College 40 years ago. She has benefited from this treatment massively and we share a similar medical history in that she also had Epstein Barr Syndrome when she was about 17.

However, in the never ending quest to find that special treatment that will 'fix me', one thing has recently knocked me for six. We are downsizing --- clearing out all sorts of stuff from way, way back. In the past few days I came across my mother's diaries. Some of the entries are indecipherable to me as they are written in shorthand but some are all too clear and what emerges is a record of someone who was probably living with fibromyalgia or M.E.

I have always had a suspicion that M.E. was the cause of my mother's constant ill health but now I have a sort of record in black and white. There are also entries which mention me being ill as far back as the 1970s. One entry from the early 80s, describes how ill I had felt for weeks and how I went to the GP and then felt fobbed off with blood tests which came back with 'normal' results. There are references to the pain I felt in my legs,in my arms, looking tired and thin, having difficulties with perfumes, food, eczema.

I knew all this of course but, whilst living a life with children and the career I once had, details get forgotten. I can't remember any of that last episode with the blood tests.

Reading those diary entries makes me wonder if there's any real hope. Do I have any realistic hope of ever, ever being well -- a state that I cannot remember, a state which is in many ways meaningless to me and not part of my reality. Reading those words makes me doubt the future because it makes me wonder if the story I have been telling myself and others for years --- that I was originally well but had glandular fever when I was 4 and then another bout of the same at 16/17 --- is true. Was I ever really well or is there something in my genetic make-up that means I was bound to become unwell and never have the same energy as other people, always destined to have the aches and pains of fibro, always destined to have more and more sensitivities to chemicals, food and so on and so on and so on ?  Is there any hope at all?




2014...will there be positive changes for people with M.E. ?

2014-01-07T10:54:24.686+00:00

Another year begins and, like many others, I start it with good intentions and a collection of aspirations and dreams. In my case, any dreams I might have are hampered by chronic ill health and a lack of energy so that, rather than drawing up a 5 point plan (as I used to do when I was in better health) I haver about what should be a priority and what is realistic in my situation.  This is akin to having a split personality with one side of me encouraging big plans and really 'going for it' and the other side standing to one side,  wagging a disapproving finger and tutting at such foolish notions.In the back of my mind are all the people I know who also have M.E.,CFS, Lyme and  other misunderstood and poorly diagnosed conditions which take a massive toll on energy and any internal resources to plan, move forward and achieve. In particular I think about those friends who are at the severe end of the spectrum of these kinds of illness and who spend their days simply surviving from one minute to the next; breathing slowly, counting the seconds, minutes, hours and wondering what the next day will bring.  I've been there too....in that unbearable dark place where you never quite know whether you will survive the day or really want to survive the next one.Still, for me, that is the past and in more recent years I have been able to do more within the carefully managed pocket of energy in which I exist.  All the same I  wish I  could identify what made the difference; what brought me forward from severe to moderate.  I have no idea, really, how I got from being so ill in 2001 ....all day every day in the dark with no stimuli, nauseous, in pain, giddy, terrible headaches etc etc to where I am now.Time ? Resting ?  Luck ?  What I do know is that any improvement is terribly fragile and one can never take one's 'eye off the ball'.  It's so easy to be duped by apparently feeling well enough to do stuff and then, too late, realising the damage that's been done --- as I discovered about four years ago when I became over-confident and deluded and soon went sliding back down the 'snake'. It took me nearly two years to climb back up the ladder but, even so, every relapse seems to take its toll and you never quite regain all that you lost. It's easy to be encouraged by people who care about us. They want us to be better because they care and so they encourage us to 'try'. Loving them back we want to please, to respond to their caring and easily fall into the trap of trying just that little bit harder than we should. The thing is, so many of us look reasonably healthy ('..but you look so well ....' !) and so I suppose outsiders can see no reason why we shouldn't/wouldn't accept their encouragement.. In my case, I also have an internal script that constantly doubts how ill I  really am and constantly questions how much I could do if I did try harder, wasn't so flaky, wasn't such a wimp. This comes from years and years of living without a diagnosis and being told my symptoms were psychosomatic and caused by anxiety, depression, or some personality flaw, weakness. It makes my whole situation very precarious..Within my group of M.E. friends, there has been discussion about support groups and forums --- how supportive they really are and how an air of competitiveness can creep in about who is the most ill, who deserves the most sympathy.  Personally, I don't think there will ever be a really safe place to go until we have proper tests that verify our illness and the particular condition we have. I think we are all in slightly different health situations which have been collected together under the umbrella term of M.E./CFS and so there are bound to be doubts and discrepancies which lead to jostling about who deserves more help, more pity, more understanding and the medical establishment has created a situation which is divisive and unhelpful. Over-stretched NHS services for people with M.E. are ba[...]



Look ! I'm in a band

2013-11-02T08:21:01.632+00:00

Many many moons ago, my dear chum Lee Lee Ingram and I were saying how much we missed being creative and how much this illness gets in the way.

Ever one to grasp the nettle (!) Lee Lee said 'Why don't you write some lyrics and I'll put a tune to them'......and from that has grown a project which has now culminated in the formation of our band Dropkick and therelease of our first track 'Trapdoor'.  It has been a real labour of love (and many giggles). The track has a sort of electro/disco/post punk/feel: a tale of twisted infatuation and naughty goings-on with a gimlet eye that looks back to disco whilst the other eye looks forward to party and passion.  Lee Lee did two great remixes of the track and then we launched a competition for remixers. From their entries we selected another 5 remixes and so we had 8 tracks for release --all very different.
 
We have been fortunate enough to enlist the support of a Dutch record label called Noisj who will produce CDs and manage the digital download release for us. The label owner's words were something like 'this is just to weird not to be heard' and 'I think there is a huge market out there for you'...so weird in fact that they decided to create a new label for our music- N.R.G.T.C.

The official release date for the CD and digital download is 28th November 2013, but it is available NOW on pre-order. By pre-ordering you will help Noisj to get an idea of how many CD's to manufacture. You can of course just pre order the digital download if you dont want a CD. Oh, also if you pre-order you will immediately get 2 tracks off the EP digitally. The EP will be available through itunes and Amazon etc after the 28th, but for pre-orders you need to go to this link - http://noisj.bandcamp.com/album/trapdoor

The fabulous Miss Mitsi B painted the cover art for us and she also features in the video which she produced for us

http://www.youtube.com/watch?v=fmHUUi1DwNw
 

To see more of Mitsi's great artwork go to her website here - http://www.mitsib.com

If you are on Facebook then please like our Dropkick Band page - https://www.facebook.com/morefordropkicks

Lastly, please share this around because as well as this being a really fun project, any monies we raise from the sale of the CD and downloads will go towards medical expenses for Lee Lee and another vintage Balenciaga Housecoat for moi


x



A toe in the water and a storm in head and heart

2013-06-23T18:54:25.569+01:00

In the past few months I have been attempting to move on from all of last year’s Benefits misery: to try and reconnect with things I am good at and which give me some pleasure; to try and be out in the world more and at home or in the virtual world less.I could foresee some of the problems this might unearth. There are others I could not have foreseenI was asked if I’d like to help out on a sewing project for people with mental health issues at out local museum.  There were four sessions and I managed to get to two. The group was made up of arts workers, museum staff, volunteers, people with mental health issues and CPNs. I wasn’t sure where I fitted in at first but, after conversation and a relaxed approach, I found that I had a lot of experiences and knowledge in common with the arts and museum workers (we had worked in the same places at different times) and everyone was very friendly.At first I found it heartening to be part of the world where I used to feel so comfortable: talking about art, making, museum collections, history, and ways to develop projects. I could feel the old Cusp re-emerging and coming to life.However, over time I realised that old Cusp was just that…old, gone, in the past …and the more I listened to what people were doing, where they were going, had been, had planned, the more I was reminded of what I could do long ago and the more mindful I became of how little I can achieve now. I realised that, by choice or design, I had been living in a narrowly bracketed band of energy which felt like ‘living’ but was in fact existing on the margins of what other people call ‘real life’.  The whole business has confused and unsettled me.Overall the project was a success and a large part of me enjoyed contributing in some small way. The facilitator asked me if I would like to help at another group, an art group, at the seaside. It’s a 30 minute drive and something I rarely attempt alone. I was very hesitant about accepting her offer because I hate to let people down: if I say I’ve committed to a project I really commit to it…but I told her that I would attempt to be there and reiterated that, because of the bastard M.E., it might be difficult some weeks.  Sure enough, I have missed the first two sessions. At the start of the project I would have been lucky to manage a drive to my local shops, two miles away, let alone a 45 mile round trip with a 2 hour art session as well. This week, despite feeling exhausted, I made myself go. I didn’t want to let down the Project Leader and I wanted to be part of that world again.The group is small and lovely. The other volunteer is warm and friendly and, again, I find myself unsettled and exhausted by the whole process. All the time, there are echoes of how I used to be, what I used to do, what I could achieve. All the time there are echoes of what I cannot do now: echoes and tremors of how I have no real goal now but drift along, buffeted by ill health, family responsibilities and necessities.  What’s more, when I was working, I had two projects running in this seaside town for over 5 years. It was my regular ‘haunt’ and everywhere I go, I see the old me.In addition to all these echoes, my Pensions Company have, somehow, got wind of the fact that I have done a small amount of volunteering and seem to see this as a glimmer of hope of me returning to work: wanting to know how often I attend, how long for, what I actually do there. They also got wind of an online art project I followed last year and want to know ‘ …what are my plans for a follow up and the work that was produced…’ as if I am going to launch myself at the art world with a major exhibition. The course was online, six sessions and for self-expression: my desperate attempt to find a way of expressing all the turmoil within that had been unearthed by the wretched ESA assessment.Everywhere I turn it seems I am reminded[...]



Going Nowhere

2013-01-31T18:03:14.180+00:00

allowfullscreen="" frameborder="0" height="315" src="http://www.youtube.com/embed/R8sewohu2qI" width="420">The wretched torment of Work Capability Assessments and ESA Tribunals and the fall out has finally reached a peak. I am more than miserable and hopeless. Everything and everybody either makes me more miserable, more resentful or feel an even greater sense of loss of control. Everywhere I turn I seem to be smacked in the face by the fact that I no longer really exist.I am 'fit for work', so I must be well and therefore not eligible for any Benefits. If I must be well then I must be able to work...but I'm not well enough to work (my doctor says so) so at least I can do some voluntary work. I apply for some voluntary work but so far nobody seems to want what I have to offer (and to be honest I don't have much faith in what I have to offer anyway --- transference ?).I look at Adult Ed. classes. They are far beyond my means (since I no longer have any Benefits or money of my own) but might be affordable if I was claiming ESA or JSA or DLA.  I'm not eligible for any of those so I cannot afford to join a class. In all honesty, there aren't any classes I want to join.  I am useful at home for looking after other people. There are always other people to look after at home....or other people's dogs. I can't have a dog of my own anymore because I can't afford to have a dog.I am stuckI am hopelessI am lostI am weary Like many people I have had my share of difficulties and rough times. Usually I have been able to pick myself up, dust myself off and carry on...not 'letting the bastards grind me down'. This time I don't seem able to do that...or not for now.Congratulations Ian Duncan-Smith and all your grand plans. Congratulations Coalition government on all your media spin about Strivers and Skivers: an easy way to set one person against another, to make a very complex and difficult situation into a seemingly 'black and white' issue. I used to be a Striver....then I was a Skiver...now I'm neither (heh !...a rhyme...maybe I'm a poet ??). I can't skive and I can't strive...so what am I ?....a little rudderless boat floating round and round and round in circles going nowhere with no name on the hull(You might think the choice of song and singer is rather 'quaint'...      Lena Zavaroni !!!Wasn't she that girl with Hughie Green who sang rather over dramatically when she was 9 years old ?She was. She was also anorexic and she was the friend of a friend of mine who died from anorexia. Lena died too. She was neither one thing or another --- a child star who had grown up and grown up the 'wrong shape' (i.e. 'fat' ...which was NOT what you wanted at Stage School in the 70s) so she tried to control her food, her environment, her relationships so that she would 'fit' and find some role that felt right. It didn't work and she lost the battle. So, despite the schmaltz and ickiness of the song and delivery...it's all rather apt because, although I'm not anorexic and I have no intention of doing away with myself, I do feel like I am going nowhere and this song and the singer have direct connections to my own life)[...]



2 Comments

2012-12-23T08:50:58.778+00:00

MERRY CRIMBO





23rd November 2012 : a special day and a special anniversary

2012-11-23T13:11:54.996+00:00

Today is the 23rd November.For some reason, this date has featured more than most in my life.23rd November was the day my Grandmother was buriedMore recently 23rd November was the day my dear dog died last year23rd November was the day I heard that my Benefits would stop because I had been found fit to work and would have to Appeal or find a way of earning a living.Probably the most life-changing 23rd November was 40 years ago: it was the day that I caught a virus that would change my life completelyYou can read the full story hereI was finally diagnosed with M.E. eleven years ago. Almost immediately I was awarded Incapacity Benefit. That financial safety net gave me some comfort and allowed me to put some of my worries aside so that I could concentrate on my diagnosis and how to deal with the news (one of the reasons I had tried and tried to stay at work was because I was afraid of what would happen to our family if my salary disappeared). If you know me or follow this blog, you'll know that my entitlement to Incapacity Benefit ended last November (23rd). My entitlement to any health/disability related Benefits ended in August. The process of being assessed has been cruel and very damaging. The damage is more to my soul and sense of self than financial.Before diagnosis I had already lived with M.E for 30 years and been completely disbelieved or ridiculed. After diagnosis I felt somehow validated, justified...despite the huge mess we call  'treatment' for people with M.E. in the U.K. The more recent process of assessment means that the severity of my incapacity has been  disbelieved and questioned once more and I feel my integrity and honesty has been questioned. I cannot begin to describe how hollow that makes me feel.So, on this special anniversary, what do I see when I look back forty years ? What has changed for people with M.E. ? For people in the U.K., I would say 'very little' (and this is me being polite). When I first became ill in 1972, my parents (worried to death and wondering how I had changed so dramatically and quickly) were told'It's just a virus of some sort. We don't know what it is. Just go away and wait for it to burn itself out.' It's still smouldering.  As time went on and I had all the classic symptoms of fevers, sore throats, aching joints, sleep disturbance, inability to concentrate, digestive issues, cognitive issues and later (reactive)depression the last symptom became the ideal candidate on which to focus. 'Depression' is an easy 'get out' for doctors. There are pills. Supposedly, you take them, in the right quantities, and the depression goes away or eases ---- if you are depressed. Except I wasn't: or at any rate depression was my central malady. There are talking therapies. You talk, they listen and help you to understand your situation. I talked. They heard. They didn't listen. Because I wasn't saying whaty they wanted me to say and they weren't hearing want they wanted to hear. Many people who are diagnosed with M.E. have had symptoms for a long long time (not usually as long as 30 years -- as in my case) but, still, they have suffered and been misdiagnosed for too long. The problem is that diagnosis of M.E. is, in the U.K., still a diagnosis by exclusion: meaning that the GP tests you for everything else that might be wrong with you and when all the tests come back 'normal' they shrug, try to think of an appropriate label, and usually choose Chronic Fatigue Syndrome (CFS). CFS (if it exists at all) is not the same as M.E. Lots of people feel tired all the time for all sorts of reasons (emotional and physical). They may feel fatigued too (tired and fatigued are not the same) but not the sort of life-sucking fatigue that people with M.E. experience. M.E. is often not a term GPs like to use....and so the medical profession and many patients have sort[...]



Letter of reply

2012-08-12T07:44:37.902+01:00


Dear DWP and Tribunal Service,

Thank you for your letter which tells me that I was awarded 6 points after appealing against the original decision to award me 0 points in my claim for ESA.

I have decided not to appeal again because I know that the stress of doing so will likely kill me or, at best, worsen my health to a point where I may never regain any ability to walk, talk or breathe unaided.

My decision not to appeal again may lead you to believe that I know I don’t have a chronic illness: that for the past 11 years, whilst receiving Incapacity Benefit, I have been a whining, malingering scrounger. Nothing could be further from the truth.

I know I am ill. Even my hapless, hopeless GP knows I am ill (presumably that is why he has been writing me ‘sick notes’ since 2001 and continued to do so whilst I was appealing the WCA’s decision).  

No…I know I am ill and, if that man at the Tribunal was a real doctor, he knows I’m ill too but, then, this whole process isn’t really about finding out about who is too disabled or too unwell to work, is it ?   This process of ESA is really about money and stats. It’s about the dreaded ‘descriptors’: a term that has ‘Orwellian’ written all over it.

The ‘descriptors’ are about a series of ‘tasks’ which we can or cannot do,  judged by a ‘trained medical professional’ who can, apparently, see how I am just by looking at me, know answers to questions about how I feel physically, mentally and emotionally without asking me ..and then enter a tick in a box so that a computer will spew out a ‘decision’ about whether I am fit to work at a job which probably doesn’t exist.

So, please don’t take my decision not to appeal as an admission of guilt.

I know the truth and so do you. It’s just that, sometimes, the truth hurts and gets in the way of what you call justice.

Regards,

Cusp (age 56, ill with M.E. since 1972, diagnosed by the excellent NHS in 2001 and messed about ever since)



Living a Limp Along LIfe: M.E. Awareness Day 2012

2012-05-08T13:22:38.355+01:00

After so many M.E. Awareness Days there seems nothing left to say, nothing to add…and yet when so little has really changed for people with M.E. it seems as if there’s everything left to say.So…after living with M.E. for 40 years in November, where do I begin ? What seems to have changed since 1972 when I first became unwell is that at that point my symptoms were seen as a curious virus that would pass and resolve itself given time. I wasn’t made to feel foolish or neurotic. I wasn’t blamed or made to feel guilty for being unwell and unable to return to school. My symptoms were not understood and my lack of energy, inability to concentrate and disastrous ‘A’ level results were seen as surprising.As time went on, and my symptoms persisted and gradually changed I was seen as being someone who was imagining things: hypochondriac, anxious, making the most of an ‘opportunity’ to gain sympathy and attention. There was never any attempt to investigate any of the symptoms I presented and asked about. I was simply brushed aside and left to wonder what was the matter with me. I didn’t know what to do about any of it so I just kept trying to live a normal life: ducking and diving, covering my ‘inadequacies’ and ultimately my shame because after years of the insinuation that my apparent health problems were my own fault, I began to believe it.Fast forward to eleven years ago when my relapse was so bad that I couldn’t get out of bed, couldn’t wash, see properly, hold a conversation, sleep or eat. I finally got a diagnosis…but no treatment except an anti-depressant: not because I was depressed my GP assured me, but because at a very low dose, the drug would help some of my symptoms.  There was no real understanding from my GP or work colleagues or friends. There was no real Internet support or groups apart from a few political groups which seemed cliquish and full of wrangling and unhappy one-upmanship. I felt very isolated but kind of expected that, in time, this huge relapse would resolve itself as the others had done: that at some point I would manage to return to a ‘limp along life’ where, by means of deception and guile I could fake wellness and achieve some of my goals. That has not happened.  Since 2001 I have seen the internet change the whole landscape, in terms of peer-support, for PWME. The amount of sharing of knowledge, support and kindness is beyond anything I could have imagined in previous years. What has not really changed (at least for the better) is proper support and understanding from the medical profession or government. There is still no proper research into our condition where it is seen as a physical, neurological illness and there are still no official guidelines which encourage GPs and other ‘Specialists’ to see PWME as people who have integrity, knowledge of their condition and a desperate longing to be well. We are still prey to every charlatan, witch-doctor, chancer and egoist within and outside the allopathic medical profession.The current economic and political climate makes everything more difficult for anyone who is unwell or disabled --- not just PWME --- and I see more and more people struggling to access appropriate levels of care. In the meantime, there is a huge push from government to find as many disabled and sick people fit for work as possible. The assessments by ATOS are a joke at best and a humiliating and cruel abuse at worst.What those in government and medicine really do not seem to understand is that PWME are longing to be well, longing to return to a normal life, to work, bring up their children, go back to education, travel, create etc. etc. and that, in many, many cases they still do all those things whenever and however they can because they are so strong and brave[...]



Spider and the Fly

2012-02-18T07:34:51.537+00:00

Sometimes I feel as if I am living inside a web; a spider's web with me as the hunted and trapped fly.This morning I had a phone call from the JobCentre to talk to me about my ESA appeal. The person I spoke to was pleasant, helpful, charming.  He was trying to do his best whilst employed within a system which isn't working and is not 'person-centred' but 'finance-centred'. It doesn't matter that he seemed to genuinely care about what I told him about my condition and my ability, or inability, to work: he was obliged to spout the mantra about how the old system was based around what you couldn't do and the new system is about what you can do: blah blah blah.I can do quite a lot of things. Even the brain fog and cognitive difficulties associated with M.E. don't mean I'm stupid. The point is, as I keep on saying, is that whatever I can do, I cannot do it for very long and I have to have frequent rests: otherwise I come to a complete standstill and relapse; become bed bound. This way of being isn't conducive to finding or keeping most jobs. During the conversation, the JobCentre employee went through all the documents I (or DIAL) had sent in support of my appeal. It turns out that DIAL have forgotten to said all the supporting evidence that I worked so hard to get together before Christmas. It's all still in DIAL's filing cabinet.  I was also told, again, that probably the most important document the DWP could receive would be the letter from my GP supporting the reasons for my appeal. There is no such letter. The only document from my GP is a hastily completed, scrappy questionnaire where he has deigned to write five word answers and for which he charged me over £40. So I am trapped between an unsupportive GP, a benefits advice support service which is telling me one thing and doing another and a government body which doesn't see me as a person but as a target figure.Everybody seems to be having a say in how I am, what I should do, how I should act and what's best for me....except me....and I feel powerless to change it because everybody else is in charge. Ultimately, of course, I am in charge of myself but my health, the 'bastard illness', always has the upper hand and yanks on the lines of sticky thread in the web, preventing me from actioning the feelings of frustration, anger, 'I'll show you' and making me feel miserable as well as ill.What would it take for someone to listen to what I am saying ? This has been my experience almost my whole adult life. First it took nearly 30 years for someone to listen and believe I was physically ill instead of depressed or anxious or lazy. Now I have a doctor who believes I am ill (even though he will not agree with me on the exact diagnosis) but I have another group who believes I am still well enough to work at least 16 hours a week.I know that this whole situation is bringing all sorts of old feelings to the surface. I don't know what to do with them. I have tried everything I know, over the past 40 years, to resolve these difficulties with my health and to be 'normal'. At this age, I know that the way I feel physically is just the way I am. I am not able-bodied. I am very strong mentally and emotionally so I have to deal with physical weakness and try to make a life for myself but I also feel like I am being made to look a fool when I know I am not a fool. I feel like a fly in a very sticky web and I know there are many more people out there like me. If only we could really rise up and make our tormentors see sense.[...]



Dory Previn

2012-02-15T18:48:34.275+00:00

allowfullscreen="" frameborder="0" height="315" src="http://www.youtube.com/embed/YL0g0Ef4iKY" width="420">

So sad to see that Dory Previn died yesterday. Her work and lyrics were/are such an integral part of my life and inner vocabulary. I'm not sure that she was ever really appreciated as much as she should have been as a performer and her lyrics, with their dark humour and cynicism, were too much for popular radio.  So pleased she finally seemed to find peace with her new partner who was with her from the 1980s until her death.

Now she's 'on her way home'.

Seems like watching your heroes die is part of growing older



Scary Monsters Super Creeps

2012-09-23T15:33:14.431+01:00

allowfullscreen="" frameborder="0" height="315" src="http://www.youtube.com/embed/CMThz7eQ6K0" width="420">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 beingdisbelieved,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 [...]



M. E . Awareness

2011-05-04T11:47:08.631+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

2011-04-08T16:52:41.102+01:00

allowFullScreen='true' webkitallowfullscreen='true' mozallowfullscreen='true' width='320' height='266' src='https://www.youtube.com/embed/3seTVyHVfVU?feature=player_embedded' FRAMEBORDER='0' />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 spaceThank you all again for all the support. It's great to have such a wonderful sounding board[...]



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

2011-04-06T11:28:46.817+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 floorAt 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 st[...]



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

2011-03-24T10:36:05.250+00:00

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

2011-01-26T14:04:59.758+00:00

title="YouTube video player" class="youtube-player" type="text/html" src="http://www.youtube.com/embed/cliJ4noAsjQ" allowfullscreen="" frameborder="0" height="390" width="640">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 a[...]



I see changes afoot !

2011-01-15T18:08:06.398+00:00

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[...]



.....she'd probably be happier

2010-12-24T10:27:33.736+00:00

(image) .......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

2010-12-15T12:28:41.004+00:00

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[...]



All shall be well

2010-12-09T12:09:30.046+00:00

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[...]



C'est Ma Vie

2010-11-18T14:04:42.915+00:00

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[...]



What I did on my holidays

2010-09-09T12:30:44.053+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.