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

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 buried

More recently 23rd November was the day my dear dog died last year

23rd 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 completely

You can read the full story here

I 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 of colluded in a compromise where the two conditions are conflated, mixed up, and we are told we have 'M.E./CFS'.  In the U.K. the NICE guidelines recommend a combination of CBT (cognitive behavioural therapy) and GET (graded exercise therapy) and this combination of 'treatments' has been created and promoted by what is known as the Wessley School: a group of psychiatrists centred around Simon Wessley who believes that people with M.E. can be helped by a talking therapy and exercise (which has been demonstrated by others to be damaging to people with M.E.)

The crux of the matter is that Wessley and his acolytes have the Government and the insurance industry in their thrall and influence. It suits the Government and the insurance industry to take this view of M.E. for no end of financial and political reasons. So, at least in the U.K., nothing much has changed for the person with M.E. in the past 40 years: there is still no test, no proper, funded bio-medical research, no proper understanding from the general public ('Oh I get ever so tired too, sometimes'), no proper understanding from GPs or training for them and no support for people with M.E. who are terribly ill, disabled and sometimes dying. Scandal after scandal has occurred and nobody seems to really care.

From a more personal perspective, my experience of living with M.E. for forty years has led me to become extremely distrustful of the medical profession. I am sceptical about their intent, their ego, their willingness to listen to alternative points of view, their willingness to really engage with a patient and their ability to look at the whole picture rather than treating each individual as a symptom or collection of symptoms, each contained in its own box. This opinion of the medical profession has been borne out by their treatment of other family members who have had similar experience to myself. Of course, not all doctors are the same and without modern medicine my son's life would be dramatically different and worse but the difficulty for people with M.E. comes about because of all the argument and flimflam around the nature of that condition and all the vested interests surrounding the debate. Once it was finally confirmed in 2006 that I had had M.E. since 1972, all the difficulties I had had, all the struggle, all the doubts about my own ability and strength were explained but I had been misdiagnosed for over 30 years by then and so, in pushing on,  I had done untold damage to my physical health in pushing through and due to the insulting and condescending treatment by doctors and other people in my life suffered all sorts of emotional damage too.

The last 11 years of my life have been wasted (from a purely personal point of view) . I have lost my career, friends, countless opportunities to work, travel, enjoy life. The saving grace is that I have children and they are a shining light in a dull and harnessed, tarnished life.

What of the next 40 years ? I doubt that I shall live that long. If I do I shall be very old and, in all honesty, I don't want to live to a great age.  I hope that there will be a dramatic turnaround in attitudes to M.E.: greater understanding and more proper medical research so that we can have definitive tests which lead to better treatment and less mistreatment of sufferers.  If this does happen in the next 15 years or so, there is the faintest possibility that I might have some useful and productive years ahead of me before I become old and more frail.

This all sounds very dour and negative. So what has the past 40 years, and especially the past 11 years taught me ? 

When I was first diagnosed and terribly ill, scared to death and hopeless, I had a brief telephone conversation with my homeopath: an elderly, caring and very worldly man. He said 'You will never get better if you don't learn to sit and watch the day'. I had no idea what he meant.

Because I had been disbelieved about being unwell for so long I had developed a way of being based upon trying --- harder and harder: trying to push against my feelings of illness and lack of energy, pushing against the feelings of 'I can't', pushing against the feelings and scoldings of  'you're just weak and lazy' towards an attitude of 'I'll show you'.  It took me years to let go of that way of being and relax. And then one day Reg's words made sense: I just had to try and stop trying and relax into what was around me, be in the moment. Reg has gone to a 'better place' now. He helped so many people with his homeopathy during his time here but helped me more with his sage advice. 

I suppose being ill and being disbelieved for so long has also given me a sense of sympathy and empathy with the underdog and the outsider. In truth, that is my way in any case, and one of the regrets and sadnesses I have to sit with every day is being unable to do as much as I used to do in order to help, assist and advocate for people who are vulnerable. Since being really ill, house or bedbound, I feel that I have still not found a way to be useful and it riles me every day.

What would make me feel better about all this ? What would help me to heal emotionally if not physically ? 

I suppose all I want is acknowledgement from the medical profession and from the DWP that I am and have been as unwell as I say I am: that I cannot keep up with people with a normal level of health and that I have tried my damnedest to make the best of what I have. I feel heard and listened to by the people who matter in my life: partner, friends etc. but unheard by the people who hold the power. I feel disenfranchised and disempowered: stuck in an endless loop of having to justify my actions, or lack of them, and justifying my existence. 

As a society we need to acknowledge that disabled and chronically ill people may be more than willing, even desperate to contribute to society ...by paid or voluntary work or others means...but access to that platform, those opportunities, has to be made easier. At the moment all we have is a series of endless barriers, platitudes and spin and a Government who uses all sorts of measures to create a 'Have and Have-Not society' where the Have-Nots (whether that is not having money or a job or good health) are blamed and shamed, pariahs to be looked down upon. Instead of having one society, one supportive community there has been the creation and perpetuation of two tribes pitted against each other whilst the those in power look on and assist the wealthy.


23rd November 2012 is an anniversary but there can be no celebration.

Veteran

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

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

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

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

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

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

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

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

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

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

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

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.

Wot I dun on my 'oleedays

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

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

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

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

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

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

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

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

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

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

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

I do now.

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

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


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

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

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

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

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

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

If you want to order the test go here

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

Hello my dear,

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

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

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

should you find the need to talk

feel my prescence

the touch of my hand.


You and I have been through so much together.

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

Do you remember when we first met ?

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

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

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

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

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

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

We wouldn't want to lose each other.

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

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


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

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

I don't think we should trust her.

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

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


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

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

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

What's that ?

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

You're imagining it.

It's all in your head.

You're neurotic.

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

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


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


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

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

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

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

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

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

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


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


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

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

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

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


What's that they say ?

'Better the devil you know.'

Well I'm not exactly a devil am I?


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

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

Snakes & Ladders

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

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

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

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

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

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

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

Cue Tired Cusp and Failing Cusp and then Christmas.

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

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

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

Cue Cusp and partner v.tired after Christmas

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

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

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

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

….and breath…………………

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

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

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

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

As one of her commenters (Nina) puts it:

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

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

This ME life is one of snakes and ladders

Disabled or sick ?

Yesterday my attention was been drawn to an excellent article in the Guardian about one person's attempt to return to work after having made a partial recovery from the depths of M.E. In the article, Melissa Viney sets out the difficulties of trying to move back into the working world when one has a fluctuating chronic illness like M.E.

For a long time now, people who receive Incapacity Benefit were in a sticky position if they began to think about a gradual return to work because, as Melissa says

'....IB has been a rigid, all-or-nothing system; you can work, or you can't. It takes no notice of the many chronic and fluctuating conditions .....'

From next week (October 27th) a new system, ESA (Employment and Support Allowance), will begin. This will divide claimants into those who are deemed able to do some work and a much smaller group who are deemed unable to work and are therefore excused and given a higher rate of benefit. Since the Government aims to cut the number of claimants by 20,000 p.a. you can imagine that there will be an onus on DWP Assessors (who are woefully misinformed about conditions like M.E) to take heed of the new, more stringent criteria by which people are judged to be capable of work and try to get as many people as possible in the 'able to work' category. It will remain an all or nothing system: a system which fails to address the needs of people with fluctuating conditions and which makes it almost impossible for such people to return to work with any confidence or feeling of security. If their health begins to falter and they have to give up work and have a lot of time off work, how quickly will their benefits kick in and provide a much needed safety net in terms of finance and confidence ?

Apart from clearly setting out her story and imminent changes in the benefits system, Melissa's article strikes a chord because she discusses the issue of the difference between disability and sickness. It is something I have struggled with ever since diagnosis. I have spent my life around disabled people and have always appeared to be able bodied, healthy, resilient. In fact I have been living with M.E. for over 30 years and have often felt so unwell that I have not known how to get through a working day. I have had blocks of time off work (two weeks here, one month there, three months here, three days there). I've ducked and dived my way through College, University, career because I felt there was nothing really wrong with me that a few days rest wouldn't cure --- even when a different reality was staring me in the face: it isn't normal to spend every day feeling ill and struggling to get through ordinary routines at work and home but I was always told by doctors that I was 'just unwell.'

In my last job I worked for a charity which was developed and run, in part, by disabled people: people who used wheelchairs, people who had had strokes, were deaf, blind and so on. How could I compare myself to them ? They were disabled. I just felt poorly. Some of those people would be judged unable to work by the DWP --- though they did work jolly hard. Some were paid and some worked voluntarily. Even so there was a recognition that their lives were impaired by their disability and they were supported through additional benefits, support in terms of better access to buildings and information.

I felt then, before diagnosis, and even now, that none of that kind of support or understanding was available to me. I still have the sense that I am 'just unwell 'and with that an implication that there is a possibility that I can get better, back to normal. I have the sense that, somehow, in the pecking order, I am perceived by many to be more fortunate than someone who is seen as disabled. In some ways I am.

I can walk unaided mainly.

I can hear, see, speak.

I have a normal level of understanding and intellectual ability.

But all these aspects of my self are impaired in some way and every day, every moment is a struggle.

Nobody seems to really understand that there are days when, if I can get out at all,

I too need to go up the ramp instead of the steps,

I too need noise levels reduced so I can concentrate,

I too need the understanding that I have difficulties in terms of concentration and memory,

I too need a special diet and reduced chemical levels so I don't feel dizzy, sick , confused.

I too need reduced and flexible hours because I cannot work a full day and I also need a situation where I can phone in and say,'I just can't get into work today. I don't feel up to it and if I force myself today it will have repercussions and you probably won't see me for the next week because I'll need even longer to recover.'

I'm sick of feeling apologetic and always having to explain or excuse myself.

So who has a life that is more 'unfortunate', more limited ? Who is more able, who should have more determination to get out there and contribute instead of taking advantage of State handouts ? It's certainly not a competition and there's no point in trying to determine who is worst off and who deserves a sympathy vote. In fact it's impossible and pointless to judge because any kind of impairment, illness or disability will be subject to permutation, variability and by the character of the person it inhabits. There is no black and white.

What there is, as in so many aspects of life, are many shades of grey and a desperate need for recognition of the fact that most people who receive a State Benefit because of illness or disability, do so reluctantly and with a degree of apology and embarrassment. They would dearly love to earn that money and offer something in return when they can ...and that is the point ---when they can.

However, in order for them to do so, there has to be a much deeper level of understanding of people's fallibility in the face of chronic illness, a knowledge that life with e.g. M.E. can feel very fragile and insecure and that, if there is any hope for the likes of us (PWME) returning to the working world and contributing our undoubted skills, employers and their other employees have to understand that chronic illness deserves as much respect as disability.

Substitute

Today is Blogging Against Disablement Day: an idea dreamed up by dear Goldfish a few years back. This will be the first time I have contributed a piece. Let me say before you read it that all I wanted to explore was my attitude to disablement as it applies to me and my experience. I have been blunt and have used terms which I would usually never use. I am using terms others might use to describe disability or their ideas about it and their prejudices. In the end disabled people are often seen as 'other' --- in 'another room', belonging almost to another species. We are in fact all people with our own gifts, prejudices, insights and humour. What I have learned and know in my heart after 51 years here is that everyone has something to offer someone esle. I have worked with old and young, sighted and visually impaired, intellectually gifted and intellectually challenged, hearing and deaf, supposedly sane and supposedly unsane, able-bodied and disabled-bodied people --- and the most important word in that line is PEOPLE.

Speech over......on with the motley


The person who stands (well ---usually sits or lies) before you today is hewn from a rich mine of disablement experience. As a child my father was Head of a Special school and I would often go to school with him; playing happily with all the children and never really noticing or questioning any disability they may have.

Once I started school myself I was volunteering to work on projects with disabled people and after I left school I went on to work in Special schools, Day Centres, clubs and projects for people with mental health problems, dementia, older people, arts projects with a whole range of people. I worked in those dreadful ‘hospitals’ where the ‘mental defectives’ had been dumped all through the 20th century and before. I witnessed first hand the last vestiges of that cruel and despicable system and then witnessed the birth of the new system --- supposedly better and more enlightened but, in fact, just as blinkered and lacking in individual response to individual needs, without jargon or policies, as the old system.

Still, I loved the work.

I loved the people and the stories and the difficulties that I tried to help others overcome.
I tried to keep away from the upper echelons of the system for it seemed the higher up the ladder the ‘professionals’ climbed the more remote they became from the people they were working for.

And then the disabled world drew a little closer.

My father developed Alzheimer’s.
My partner’s dear mother developed the same disease and I watched her scramble down the same slippery slope.

The work I had been doing with older people with dementia became more personal.

My partner developed, for a time, an eye condition which led to partial sight and then our son was born and he was disabled ….. and with no warning I felt that now I really could claim to know about disability: the shock, the grief of having a disabled child with a syndrome which no one had heard about; a child who had all sorts of problems with sight and mental and physical development and who, it was supposed, would ‘never amount to much’.

The work I had been doing with visually impaired people became more personal.

The work I had been doing with people with learning disabilities became more personal.

At the same time I worked for a charity providing and securing services to disabled people and many of the staff had a variety of physical disabilities and sensory impairments.

I thought I had a fairly good handle on disability: the social model, the medical model, the perspective of the parent of a child who was disabled, the perspective of the child of a parent who was disabled, the carer. All day I worked with disabled people and came home to a disabled son and disabled parents.

I thought I knew disability. In fact I lived all around the edges of disability.

Knowing something and living it are two different experiences.

Seven years ago I became disabled and wasn’t prepared for the personal challenges ahead.
This was no dreadful sudden accident; no sudden disease. This was a slow insidious crawl towards being able to do less and less until my senses, my thought patterns, my sleep patterns, my muscles, my memory, my fine motor skills, my perception, all left me and I was left in bed all day for months barely able to sit up or eat, wash or dress, beae the light or bear the sound of my own children playing.

This was the world of M.E.

And no one took it seriously.
I was’tired’
I was ‘poorly’
I was ‘depressed’
Burnt out

If I complained about certain foods or smells or chemicals making feel worse
I was imagining it,
being hysterical
awkward

Gradually I made some progress.
I could make it downstairs and sit on a sofa for maybe 15 minutes

Now I was on the mend

My former workplace felt justified in phoning to ask questions about projects which had begun to falter without me at the helm. People began to ask how long it would be before I was back. I tried to describe how debilitated I was: that even a conversation on the phone of a few minutes could exhaust me; that I had no idea when I could return to work. Sometimes they called round

‘Oooh you look much better than we expected…’

That was when the penny dropped --- even in my addled brain; even these people I’d worked with for years, who were disabled themselves, could not see that I was as disabled as them. My disability was invisible. There was no sign round my neck that began to tell how little I could do, how impaired my functioning was. I had no badge, blue, orange or otherwise. I had no wheelchair, no cane, no obvious form of assistance or support and I had no obvious difficulty in communicating or understanding.

At best I looked like a ‘normal person’
At worst I seemed tired.
My disability was invisible

My disability was invisible to
My work colleagues
My friends
My relatives
My neighbours
My GP (who smiled politely and made nice noises but offered nothing but anti-depressants and graded exercise ‘til your heart begins to pump’)
and then it turned out it was invisible to the DWP, the NHS, the insurance companies, my pharmacist and almost anyone I came across unless they had M.E. themselves or a close relative with the condition.

And gradually the friends and work colleague lost interest.
I couldn’t join in the work-based debate
I couldn’t join in the gossip
I couldn’t go out and join in

Most painful to me was the fact that, as an artist-at-heart, I could no longer practice my profession. Not only was I unable to physically handle the materials but all ideas had evaporated, all intellectual inner-banter had faded and if I did get a glimpse of an idea as soon as I thought I had sufficient energy to put it into practice the idea and thought processes slipped away.

For this invisible condition there is little assistance.
My GP is next to useless
It seems it is almost impossible to qualify disability related benefits because I have a condition which fluctuates and which doesn’t fit into nice clear boxes on forms. So, 7 years from the onset I remain only ‘incapacitated.’

I cannot qualify for a blue badge though I often struggle to walk even a few yards and waste precious energy driving round to find a parking space near to where I have to go.

Over the last 7 years all I have been offered is a packet of anti-depressants every month
…….. and a grab handle for the bath from a sympathetic OT.

With all my experience of disability, professional and personal I struggled to understand where I came in terms of self-definition.

Was I able-bodied ?

Was I normal but ‘just ill’ ?

Surely if you’re ill you get better or die ?

I have done neither ---- just remained.

Am I disabled ?

Do I have what are seen as the common accoutrements of disability?: a wheelchair, a cane, a hearing aid, a guide dog ?

Do I have obvious communication difficulties ?: slur my words, make ‘inappropriate noises’, self harm ?

Do I need feeding, help with personal care ?

Do I ‘look funny’ ? ‘sound funny’ ?

Do I need a ramp to allow me access to a building ?

A loop system to hear a performance ?

The answer to most of these questions is ‘no’ or ‘sometimes’. Yet it seems that unless I can answer 'yes' to most of them I can never be seen to be disabled and yet I am.

I cannot take my old place in the world. I cannot take a part in normal society (whatever that is). I’m left on the margins because of lack of stamina, lack of an ability to fit into conventional timetables, because you don’t see my brain switch off, my head spin, my gasping reaction to your perfume, the polish on your table, the feeling that my legs will buckle, the sense that I have to lie down NOW.

I look normal. I look able bodied but, in the words of the song, what you see before you is a substitute for who I was.

I am invisible and shut away behind a mask of chronic ill health and closed doors.

I am a person with M.E.

Time - He's Waiting in the Wings

Time - He's waiting in the Wings: one of my favourite Bowie songs when I was just a little Glam Rocker with my platforms and satin jacket......and now he seems to be lurking and hovering in the wings and afraid to do his part.

Time in my head is kind of linked to energy. As I 've said before, I'm sure I've suffered from the bastard illness almost ever since I was a little Glammer in my own eye. I've had periods with no energy; periods with more energy and some periods when I had strange bursts of energy that seemed short lived and urgent like a sparkler fizzing towards the end of the wire: I had to be busy and get everything done before the energy disappeared up my own Roman Candle in a puff of smoke.

One of the things that seems to have changed in the last seven years since I became an official PWME is that time is all askew. My relationship with and experience of time and space no longer seems in sync with other peoples'. At the start, this was because my sleep patterns were so awry that I slept in the day, woke at night, crawled back at 3a.m. and woke at 11 a.m. or 1 p.m. I still have periods when my sleeping is askew but mainly they are just that --- periods, phases.
However, what I cannot seem to get used to ---- even after all this time ---is that everything takes longer.

My energy levels mean that I'm slower. My confusion and memory lapses mean I often have to do the smallest things several times over before they are right because I forgot where I was, where I put something, what I was thinking. My concentration means that I'm easily distracted or sent off in another direction. And then, even when I seem to have grasped the nettle and I'm finally on track, I get tired again so it's time for bye-byes and a nap.

The 'nap' might be 1 hour, 2 hours, 3 hours and that’s a big chunk of the day when it takes you nearly an hour to wash up the breakfast things and the children are home again by 3.30 or you have to be out at 2.45 to collect them.

I think that, apart from all the other numpty howdedos of the last few weeks, that is why I have become so tired and frustrated since Xmas: I had all sorts of things kind of planned, that I wanted to do and thought 'Yes, by the second week of January, I 'll have done 'x' and then I can do 'y' and that’ll lead to 'z'. That's how it was when I was at work. I was organised, methodical had a plan and stuck to it. There were always plenty of irons on the fire, pots on the stove, plates spinning (probably part of my downfall !) and now the irons stay in the bloody fire til they melt, the pots boil over and scald the hob and the plates wobble and topple and smash and I still cannot get the idea that it is all possible but that it just takes longer.

I will get there in the end but sometimes 'the pretty way' doesn't seem all that picturesque.

As a P.S. to the last post about the Arts Council's failure to support Disability Arts: there is now a Yahoo Group; Disability Arts Defence to campaign about the cuts and the erosion of the Disability Arts Movement

David, Goliath, the bastards and the saviours

Dear NMJ has alerted her readers to a very interesting post by Caroline at INSEARCHOFADAM about bullying.

In all honesty, life at the moment is a real curate's egg --- good in parts. On the one hand I have the children who are all excited about Christmas and the joy of buying their presents and anticipating their faces in a few days time when they open them. I have the luck that two people have ordered sock monkeys which I enjoy making when I have the energy and I feel blessed and rather honoured to think that people who have seen my strange creations on this blog should want to own one for themselves. It's busy as ever at Christmas but it's all good.

On the other hand there is a lot going on in my head about 'the illness' --- the bloody illness from which you can never escape.

Now, at the moment, the way I feel generally is not terrible...it's just my usual state with the odd bit of nausea, headache, tiredness etc. thrown in: the gay abandon and pick 'n mix, selection box symptoms in the day of a life of PWME....but..... what's really getting to me is this bloody insurance business and the constant nagging pressure of being coerced into seeing a psychiatrist when I don't want to, don't agree with all the nonsense that the Insurance people spew out about my need to see him and all the phone calls, emails and letters that go into fighting Goliath. It's there all the time and it's beginning to drain me.

Reading Caroline's post last night signalled to me what this nagging feeling is all about and why it drains me so much: I feel I'm being bullied. I am being bullied. And though it's something I rarely talk about

because I'm 51,

because I have responsibilities,

because I have better things to do,

better things to think and talk about,

because it's in the past,

because I should be OVER IT BY NOW

is that I spent the whole of my secondary education being bullied and the feeling has never really gone away.

I can identify with everything Caroline says about the echoes of the past always ringing in your ears somewhere. There is always a part of me that is on the alert, waiting to be ambushed, waiting to be abused, denigrated, humiliated. I never really think what I've done is good enough, never really believe the good things will last. I do now feel I deserve the good things when they come ---- and it took me years to come round to that, but I still don't trust them just as I have taken years to trust people in RL.

Caroline is pleased she has achieved the goals she reached out for so as to prove her bullies wrong. NMJ, who was not bullied but who witnessed her kid brother being bullied, would like to form a Society for Kicking in the Heads of Bullies.

Me, I'm past wanting to kick in their heads. It's all too long ago. Part of me has given up the fight and just wishes it had all never happened, wish I could still talk to the other person who was bullied with me....the only person who really knew what it was all about. But that's too late too: that person was dead of a heart attack at 39, three weeks before our 40th birthdays --we were born one day apart.

The insurance fiasco is just another reminder of my past; the past I am always trying to escape but never will. I wonder if those bullies have any idea or any memory now of what they did. Do they realise how much their taunts still linger? When I see one of them on TV telling me about whether it will rain tomorrow or the sun will shine does he imagine me watching him and feeling a glimmer of hatred as the old film projects it's frames onto the back of my retina and I feel the fear and anger all over again. Bet not.

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

And then, on the other hand, there is light in this darkness ----- for who should come forth with a candle, bidding it to shine with a pure clear light but my blogging chum Kahless who awards me with a Best Blogging Buddies Award.

Couldn't have come at a better time, my dear. Thank you once again. Gives me real faith that there is still kindness in the world and strength to carry on fighting

David & Goliath

Not many posts of late. Too much going on. On the one hand I'm still being hassled by the Insurance company about my claim. They still insist I see a psychiatrist ---as is usually the case when they want to try and prove that someone with M.E. has mental health problems such as depression so that they can then say the condition is treatable and so it is possible to eventually return to work. I know I'm not depressed (though there's no shame in being so) and my Consultant has said I'm not. Even so the insurance company want to play this game of Cat & Mouse their way in order to win. Ill or not I'm a fighter and even though it's really beginning to get me down I'll not give in without a fight.

On a more positive note, I have had 3 orders to Sockeemunkee for Xmas presents (one is from that eminent 'Vedette Blogeuse' and renowned author NMJ) so at least I have something positive and jolly to bolster me up in the dark winter days and the pressure of being a little David in the face of Goliath.

That's NICE

Some of you M.E. Peeps may have heard that the One Click Group is taking NICE to court over the latest guidelines about M.E./CFS.

Recently, Ann Robinson (no, not that one with the ginger hair and curled lip) wrote an article in The Guardian: Sick, mad or bad? saying that she cannot she what is wrong with the guidelines which suggest that CBT and GET (Graded Exercise Therapy) will be beneficial to PWME.

What's wrong with that idea is that CBT is a method through which one is supposed to be able to retrain the thought processes behind certain activity. It is used in a variety of contexts and with people with a variety of conditions.

Now, CBT may be useful in the sense that, for those who are having difficulty in adjusting to a restricted existence, they may gain insight into ways in which they might adjust to their plight. However, having been offered and accepted my GP's kind offer of CBT 5 years ago, I found that the therapist put great emphasis on ways in which she thought I could retrain my thinking processes to overcome my fatigue, pain, disorientation and muddled thinking. Now, if those aspects of myself had been psychologically based ---e.g. if I was clinically depressed and, as a result, the body was willing but the spirit weak, and I therefore found everything just too much effort, this may have worked. What she failed to understand was that I was not depressed and that the spirit was all too willing to get up and get on with whatever I desired but my body was weak and unwilling to let me. That's why PWME are so cross and agitated and frustrated about the idea that CBT can help them.

Similarly, the notion of GET is based around the fact that one is kind of 'out of condition' and if one can only motivate oneself (which again implies the idea that the problem is in the mind) to get up and get out, incrementally increasing the amount of activity, then one will eventually reach a state of nirvana where the idea of doing the London Marathon is all tickety boo.

Once again, when muggins was very, very poorly 6 years ago, muggins was persuaded to try this 'therapy' by my GP. Silly really ---I should have known better and my body was telling me to listen to it but no, I thought the GP must know better. He's such a nice man and so quietly spoken. He means well. He means well but he so deluded. I'm sure that my months of trying to walk further, walk faster made matters worse. This outcome is not unusual and GET has been shown to make people with M.E. worse --- not just in the short term but in the long term and sometimes permanently.

So, Ann Robinson, that is what is wrong with the Guidelines --- they are balderdash and not only that but they perpetuate the notion that
a) if only PWME would get up off their fat arses and TRY and
b) get over the prejudice about 'therapies' and the nuanced implication that they (PWME) are, in some way, mentally ill,
then they would get better and could go back to work.

This doesn’t help anybody and if you look at the Ann Robinson article via the link above and the message board that links to it you will read the most astonishing tripe and bigoted nonsense about PWME from all sorts of people. Thankfully, dear NMJ has put the point of view of PWME forcefully and told these twits a few home truths.

And another thing whilst talking of bigots and being misunderstood......

The proposed reform of Incapacity Benefits will most likely make people like me feel even more judged, intimidated and harassed than we do already. Only last year I was repeatedly asked to go for a Personal Capability Assessment at my local DWP office. I can only reach this town (11 miles away) on my very best day (few and far between and what any normal person would judge to be a 'sofa day')and this request was during the summer holidays when things are at their most hectic and I struggle every day.

I refused and refused until, in the end, my GP sent a letter and miraculously I received a phone call from the DWP telling me that I need not go and they would not contact me again for 3 years. They had not understood my condition or contacted the GP first and they had not understood the strain their type of persistence puts upon people who are already struggling to exist.

Last week, my friend who lives opposite was asked to attend the same office for a PCA. He is the same age as me, ( not that old) ,has a chronic heart condition, has recently become profoundly deaf and cannot walk further than abut 10 metres (with the aid of a stick) without being breathless and having to sit down. In all honesty he probably has about 5 years of life left if he's lucky. His own GP and Consultant have told him so and whilst he tries to adjust to this fact he is harassed to go for the PCA. In fact when he got there, the assessing doctor spent no more than 3 minutes with him and said it was ridiculous to even think about him working.... Yet still the pen pushers at DWP made him go.

The new assessment that comes with the reforms next October will, apparently, assess you for what you can do rather than what you cannot do. For example:
Can I use a keyboard and answer the phone and take a message ?
Yes I can do both.
Can I walk more than 30 metres?
Yes sometimes.

What none of these assessments ever seem to assess is how often, how regularly and consistently you can do any of these things ---particularly when you have a condition like ME/CFS, which fluctuates, day to day, minute to minute. They never take into account that inorder to do quite ordinary things like go to the Co-Op in the car two miles away, buy a loaf of bread and come back might entail a slow and steady preparation and a over an hour's rest afterwards. They also never seem to think about the notion of returning to work within the context of a life rather than as an activity in itself.

For example, on a good day I might manage to work for a morning (desk bound/sitting down sort of job) but which morning that is can vary. Presumably an employer would wish me to specify which morning I would show up for work but I never know from one day to the next how ill I'll feel ---so who will want someone who can be so unreliable /

If I was assessed as being able to return to work (even on a part-time basis) on the basis of my ability to use a keyboard and answer the phone, and that was all I had to do then I might be able to return to work but that doesn't take into account the actaul businees of working within the context of my life. There is still a house to run, children to care for, shopping to be done etc etc. It's the everyday existence stuff that takes whatever energy and wit I have. Holding that together is more than enough without adding to it by going out to ork as well. I cannot do it all. And what’s the betting that if I did return to work and into a job supplied by the DWP (so that they could tick a box and make their figures look good) that it would be a dead end job completely alien to my experience and expertise?


In the end, my suspicion is that a lot of this is down to money, politics and big business. It suits both the Government and the Insurance industry, who are in sway to each other, to uphold the Psychiatric Lobby who insist that M.E/ CFS is psychological rather than neurological. If it's psychological it's fixable by drugs or therapy, wizardry and mind bending and then we can all go back to work and save the Government and the Insurance the bother of paying out for what is due to us: us, who paid our taxes and contributions, who set up insurance plans and paid our premiums, who often went on working trying to pretend everything was all right when it wasn't and wanted and want desperately to be well and get back to a normal fulfilling life where we're not dependent and spending our time defending ourselves. The savings the Government and Insurance Industry think they might make would be better spent of proper Biomedical research and care instead of money making and ego building

M.E. on 'You and Yours', BBC Radio 4

Just to let any PWMEs out there know, Radio 4's 'You & Yours' is having a week long feature on M.E. starting on Monday. Well actually it started today but I didn't know until after the broadcast. However, there is a Listen Again feature.

There's also a very interesting debate going on on the BBC Discussion Board

However, don't get you hopes up too high because today they had an interview with David Puttnam who reckons he has M.E. He has given similar interviews in the past, including one for The Guardian last year. If you listen to his description of symptoms you'll soon realize that he almost certainly does not have M.E.

All the same at least the thread of features in next week's programmes will highlight the condition and may get people thinking

Apologies

O.K. so now you all think I'm nuts because I keep posting up these YouTube videos of the most bizarre acts I can find from the 1960s. I can't help it. I love that sort of thing and always have....maybe I shouldn't impose my strange tastes on other people ?

Changing the subject I am perplexed by a dilemna.

How does someone with a chronic health condition attempt to move on when progress is impeded by bureaucracy and the need for profit over welfare ? (There, told you it was a change of subject)

The matter in hand: last week I saw a job advertisement for a vacancy as a display assistant in a local High School. Having nearly fallen off my bed to think the County now pays people solely to put up displays, I thought....

'I could do that'
'It's only 6 hours a week'
'I might be able to manage that'
'I should at least try'
'I might begin to be perceived as a real person out on the world'
'There could be face to face contact with adults other than my partner and a few Mums at the school gates.'

I sent off for the application form and job description. Upon receiving it I nearly faltered at the first hurdle: one of the listed requirements for the job was

'Must be able to maintain and use staple gun'. (I kid you not)

After 5 years at Art School I wasn't sure about this but I screwed up my courage and thought 'No, I may be just a chronically fatigued numpty to some people but I know inside me there's a real professional staple gunner just dying to get out.'

So dear reader, I applied myself to the application in hand. This was a daunting task for a job of only 6 hours a week for, being a County Council post, I was required to set down my entire personal, education and employment history with two references and a police check if I was successful.

After over an hour of form filling I was 'done in' --as is the common parlance hereabouts.
I thought, do I really want all this hassle? But, I decided to climb that mountain and forge that stream.

Having completed said form I began to worry, as is my way, and I thought I'd better just double check this job will not affect my benefits.
No. It was OK.
Then I thought ' ..but what about the nice people at the Insurance and Pension companies who have agreed to waive my premiums because I am/have been/ can be so poorly and who regularly hassle me with long forms asking me, my GP and the hospital consultant the same questions about whether I'm better and whether I can/when I shall return to work ---and pay my own bloody premiums?'

There is the rub, dear reader. I thought I cannot ask the companies themselves about a maybe, possible toe-in-the water attempt at being a 'real person' again for 6 hours a week, for they will be suspicious. They have been known to employ covert beady-eyedness.
No, I shall ask my financial/insurance-y chum who knowsaboutthesethings.

He said he did know .....and any sign that I was perhaps and maybe able to do any voluntary work or limited paid work would be seen as the perfect excuse to make me pay my own bloody premiums (at this point nearly £100 per month) so I was best to screw up the job application and forget the whole thing unless I wanted to put our family budget in jeopardy.

So beware my PWME (or other chronic health conditiony) chums. In the eyes of insurance companies etc. you are apparently ill or well, black or white, working or not working and there are no areas of grey

I shall go back to being a numpty who feeds chickens, makes sock monkeys and seeks out obscure 1969s German girl groups who look like Dick Emery in drag. To be honest I wa snever sur ein the first place. Despite judicious pacing, Reiki, herbs, vitamins, prayers to all the Saints and a few daily blasphemies, my energy is still not 'tip top' or 'band box' and all activities must be approached with great care, cunning and forward planning, BUT I was prepared to try and give it a go.

N.B. For years I did pay own premiums because my ex-employer was too stingy to provide a pension. I also forked out for critical illness cover so it's not like I feel I'm sponging off said companies --- just getting what's due, ---- but I would like the opportunity to try to be in the world again without the risk of messing everything up --- health and budget

Time to try again

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

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

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



Blessed curse,
No dripping blood for me.

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

Drown.