Watching Rolf Harris but thinking of Baudelaire…Sounds like it could be a pop trivia question. Which British band sang the line Watching Rolf etc?.But It’s actually what I’ve just been doing. And before that I was watching Martine Mccutcheon but thinking of Keyser Soze. (not quite as pop trivia sounding, that one.) and before that, watching two of the Nolan Sisters but thinking of The Sopranos. And when The Letter arrived a few hours ago, and the snap of the letterbox roused me out of my reverie, tired eyes straying from the telly, I was watching Meera Syal but thinking The Two Ronnies. Now I am about to read The Letter. The letter from the hospital.
Sorry, if this all sounds a bit random and dislocated but I can explain everything. Well I can try to anyway, if my thoughts can fight their way out of the paper bag of illness and daytime telly that I’ve sealed inside for the past few days. But to explain properly, I’ll need to turn back the clock. About four hours should do it.,,,There.
Coming up on today’s show, Micheal Buble
I hear the post arrive. Just one envelope by the sound of it. I have an immediate and strong feeling that it’s my hospital letter. Don’t know why, I just do. And if it is then I am very keen to see what it has to say. But, keen as I am, I will have to wait. I can’t get up just yet. Too ill. I stare at the T.V. Mariah Carey sings I Want To know What Love Is and I think of Michael Gambon. I’ve talked a little about living with CFS/M.E in a previous blog. In Parklight. I mentioned there about differing degrees of severity, the constantly fluctuating symptoms. Well, after a not too bad two or three months, I have crashed spectacularly. Felled. And that’s how you find me this day, folks. Abed, in all my unshaven, sweaty, not eating properly, cracker-nibbling, feeling sorry for myself, railing at the vagaries of the NHS, glory. Hi.
Mariah sings -A little time to think things over, I better read between the lines.
My son’s stopover is cancelled and I lay here unable to do much of anything, propped up against pillows, laptop on my belly, occasionally dipping into the virtual playgrounds of Twitter and Facebook, thinking my thoughts and letting the daytime wash over me. I’ll call some people for a chat later but they’ll be at work now. I scratch my stubble, what me and my boy call my chin pie. I remind me a bit of Michael Gambon at the moment, as Marlow in the Singing Detective. I need a bath, Need to change the sheets. But I just lay, telly on in the background, my stream of consciousness running over the top of it. Sometimes it’s the other way around. I hereby dub myself – The Minging Defective..
Gryff Rhys Jones says he is taking over as Fagin in Oliver and that he’s excited cos he’s grown up with all those great songs.
Daytime T.V tends to polarise folk. There are the Daytime T.V Snobs who wouldn’t watch it with a barge-pole. And then there are the Daytime T.V Slobs who can do Jeremy Kyle to Paul O Grady straight through, soup to nuts. Well I was never the Daytime TV snob. I’ve even written for it in the past. But I was never an avid watcher either. But due to some of the grim states I’ve been in whilst watching DTT.V, I now equate showbiz gossip, bright coloured sofas, antiques, gardening experts and numbered boxes with feeling extremely shit. If you hear the Countdown theme music coming from my flat, you know I’m hurting. Which is a pity, I love wordplay, but to me now, The Countdown Clock Music is the sound of Hell’s Doorbell. Because when I’m really bad, like now, audio alone is not distracting enough, films require too much concentration, so that’s when I give myself over, as a last resort, to the endless loop of book-plugging anecdote-toting slebs introduced by host after anodyne host.
Ben Elton says that he lives in Australia now and that comedy on British TV is more cruel these days.
You have been prescribed a course of Daytime TV. Please read the instructions carefully: It says, Watch first thing in the morning, preferably with food, then repeat every hour or as required. Warning: Side Effects may include Boredom (This Morning) Incredulity (David Dickinson‘s Real Deal) Random Word Shouting (Countdown) Rolling of Eyes (Alan Titchmarsh) Increased Agitation and Thoughts of Self-harming (Deal or No Deal) and Decreased Libido (Loose Women).- It’s not all celebrities though..
Nigel, now Nikki, is worried about her forthcoming gender realignment operation.
Why, I wonder, do the Transgendered of Middle England always seem to keep the first two letters of their Christian names? Was Alec, now Alison, was Peter, now Penny. You’re free! I think loudly at the screen. You can choose any name you like! Be Brunhilda or something. Yay! The distractions have begun…
Alesha Dixon says she is single and quite likes men with stubble..
Right, need to get up. Fetch my letter. Can’t though, not yet. Then I receive a message on Twitter, someone kindly asking how I am. I type in the short answer, Not Good Today. The longer answer would have gone something like this..
Kate Thornton asks if I would like to win £15,000 by answering this simple question.
Actually I’m welded to the bed. My guts, well, it feels like I’ve been eating oily rags. My head is..eh..you could say giddy but that doesn‘t really cover it. How about A Nodding Dog on a Rocking Horse? (I love that the word giddy comes from Gid, a brain disease found in Sheep). Joints ache and buzz. Tendons smoulder. And what the bloody hell is this new thing? These horrible electric surging sensations that seem to emanate from my gut, travel down both legs then gripe and at the soles of my feet. Oh, come on, The soles of my fucking feet? That’s just playing dirty.
Meera Syal, singing in the Asian girl group, Saffron. She says she can’t believe they just showed that clip…
It puts me in mind of the famous Class sketches from -That was the Week That Was. – Remember those? With Ronnies’ Barker and Corbett and John Cleese. But I imagine it with Illness in place of Class. So it’s Upper Ill, Middle ill and Lower Ill. With me as Barker, in the Middle, saying – I’ve got M.E. So I look down on him, cos he only has Athlete’s Foot, but I look up to him, cos he has a rare form of cancer. I look up to him with Motor Neuron Disease but down at him and his Hernia.
David Dickinson says That’s the best ceremonial truncheon I have ever seen..
I think back to my recent hospital appointment and the young consultant that I’d not met before. He was unfortunate enough to catch me on my Not Taking Any More Shit From Hospital Consultants Day. See, I’ve been mightily pissed of for some time with the attitude of some of these quackfucks. They ask you for a complete run down of how you’ve been, so you tell them, leaving nothing out. Then what comes back by way of summary is some watered down, hands off, follow up letter that leaves the nature of the illness wide open to interpretation. Or misinterpretation. It’s unacceptable. Dystopian. It’s bad enough living with this thing without being shafted by those who are supposed to be on your side. Mmm, this thing. Maybe that’s what we shoud call it. Not M.E or CFS, just ‘this thing of ours’. Like they say in the Mafia. I’m not, by nature, a joiner of clubs and societies, so I’ve never gone down the Support Group route. But now I’m imagining turning up to a meeting of the MEfia where they sit around like The Sopranos. -I woulda fuckin whacked the mothafucka. but I was so fuckin whacked out myself. Yeah I know how ya feel. It’s ‘This Thing of Ours’ It’s gonna fuckin kill me one day. Va Fanagool! Bada Bing Bada Boom..and bust.
Two of the Nolan Sisters review the newspapers…
So why do the medics seem so chary of validating us a lot of the time? Well, with no current definitive test to prove you have it, you could say that it’s open to exploitation by malingerers and fakers. But really, how many fit people do you think are walking around with letters in their pockets saying they have severe CFS/M.E having duped a consultant into believing it? Twenty years ago, they are fond of telling me, M.E wasn’t even recognized as a valid condition, at least now you can get a diagnosis. So what? I should go home and be eternally grateful, because it has a name now? Well whoop-de-fucking-doop. Someone (non medical) said to me recently. You just need to motivate your mind – So what I want is a letter that I can show to those people that says quite clearly, in medical terms. Back the fuck off, Jack..I don’t blame people for being cynical, I would be myself. Have been. And I’ve tried not believing in M.E. But that doesn’t do any good. Cos it believes in me..
Right. here’s an idea. How about an CFS/M.E Tsar? Well, we had a Drugs Tsar didn’t we? We even had a Liver Tsar. What next, a Haemorrhoid Tsar? Yes, I might write to the Health Secretary and suggest it. After all, thousands are battling with CFS/M.E. A lot of confusion surrounds it. So we need someone to advise everyone in ‘ways of the malaise‘ There you go Andy Burnham, (had to Google that) have a catchy slogan to start the ball rolling. – Hey, those weird sensations in my feet, maybe they’re soapbox splinters. I’d better get off mine then..
The T.V. Gardener says that it’s the time of the year for planting spring bulbs and that daffodils need to be about 12cm down..
So I said to the young Consultant, who looked more worn out by the end of the session, than me, poor bugger, that it would no longer do to simply reiterate a pre-existing diagnosis of CFS/M.E which I was given whilst still being able to work full time, still travelling up and down the country, not to mention nipping over to Dubai, Saudi Arabia and Hong bloody Kong. Now I have days when I feel quite the social butterfly if I manage to visit both the kitchen and the bathroom. A want a new letter, I asserted, that makes a very clear distinction between the mild symptoms I had for years and what has been going on for the last 18 months. The consultant eventually promised he would write something substantial. Well, we’ll see.
Martine Mcutcheon says that writing a novel is different to acting because with a novel you get to play all the roles.
You see CFS/M.E. is really the Keyser Soze of illnesses. You remember Keyser Soze? The elusive murderous villain of that brilliant 1995 film The Usual Suspects. The big question was, was he real or just a myth? There was plenty of anecdotal evidence of him but no hard proof. Kevin Spacey’s in it playing a character called Verbal Kint who appears throughout but most memorably, in the final pivotal scene, with it’s brilliantly arch twist. If you’ve never seen it then you really ought to. If possible, before you read the end of this blog. Which is an homage to that final scene…
Alan Titchmarsh says don’t go anywhere, we’ll be right back, after the break.
Aha! Now would you believe it? For the first time today, my stream of consciousness is in perfect sync with the TV. For who’s just appeared on screen but Kevin
Spacey. Advertising a camera. He says that with this camera he can make memories that, every time you look at them, it does that hurty thing right here. He rubs his gut.
Mmm, blog photos.I click on the Pictures on my laptop. The heat coming off the base of it is soothing to my own hurty abdomen. Photos..
Some of the pics here give me a hurty feeling for one reason or another. Either cos I find them sad or beautiful. Or both. And simply because they remind me of what I’ve been missing. Getting out. Connecting. They’re mostly from the immediate area around where I live, a few from further afield, taken before I crashed. There’s Wet Cardboard Man (1) Coffee (2). Cashpoint (3) Missing (4). Broken Mirror Man.(5) 1 in 4 (6) Pavescape (7) Kiss (8) Chelsea Chaplin (9) and Lights (10)
If you want to, look them over whilst I finally make the mammoth trek, ten paces each way, to fetch my letter. A full four hours after it arrived. Four hours. I’m ill, you see. Well, in principle, anyway.Well, I was right. It is from the hospital. I can tell from the envelope. And I’ve just remembered a quote by the French poet, Baudelaire. The one that also crops up in The Usual Suspects, when Spacey’s character, uses it in reference to the evil Keyser Soze. It strikes me that the quote is the perfect companion to CFS/ M.E It goes..(I glance up at the telly)
Rolf Harris says that he’s always regretted, when recording Jake The Peg, that he didn’t make the diddle iddle ums,a bit faster.
‘The greatest trick the Devil ever pulled was convincing the world he didn’t exist’….Baudelaire/Verbal Kint
Watching Rolf Harris but thinking of Baudelaire…
I tear open the envelope. Two sides of A4, typed Whilst I read it, I invite you to read my re-imagining of that final scene from The Usual Suspects. I’ve called it, The Usual CFS Specs. I have taken the liberty of substituting The Detective and the Suspect with The Consultant and The Patient.
The Usual CFS Specs
Office Interior: Two Men. The Consultant wears a shirt and tie and sits behind a desk. The other, The Patient, sits in a chair opposite. He is more casually dressed and looks a little dishevelled.
‘Okay, I believe you’ says the Consultant ’I have put it in writing that you have a fluctuating but nonetheless significant and at times severely debilitating illness‘.
‘Exhausted, all the time. I feel like a totally flat battery’
The Consultant blinks then glances to the left of the phone, at an old copy of Reader’s Digest
‘I have a lot of nausea too. And my digestion is terrible’
The Consultant’s eyes widen and he drops his cup to the floor where it shatters. His eyes dart to the wall opposite. An anti-drugs poster, It shows two young men smoking a joint.
‘I have aching joints..’
Next to the poster is a wall calendar. The Thought For the Day is – ’The best plans of mice and men often go awry‘. The Consultant’s eyes widen even further as he recalls the name of the author of the quote. Robert Burns.
‘I get electric nerve pain and my foot often burns’
The Consultant’s eyes flit now to the window sill. A leaflet advertising a Great Deal o Subscriptions to Time Magazine.
‘I’m dizzy a great deal of the time’
The Consultant gasps, as if winded and stares, bug-eyed, out of the window, mind racing, before suddenly coming back to his senses. He rushes out of the room, downstairs, out of the building and into the street. He looks around frantically but he cannot see The Patient. Some distance away, on the opposite side of the road, The Patient shuffles and limps along. He’s is in the middle of a throng of people going about their business, paying him no mind. He turns a corner into a more quiet street where he gradually straightens up. His pace becomes more brisk, then the limping and shuffle are totally gone. He smiles inwardly as he brings up his hand to rest on the letter in his pocket…
Here’s today’s Crucial Countdown Conundrum. TRIPKHLAG. Your thirty seconds starts now..
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