between life and death

Turn off radio 4 after hearing Esther Crawley. A serious life threatening illness reduced to treatment via skype. The woman needs help......

Sit in the dark a while until I can be sure she’s gone.

Log onto the BBC website......’’Chronic Fatigue Syndrome cured by Graded Exercise Therapy.....’’
Fortunately the monitor survives.


Turn off the light again.......
Feeling fxxking furious.


Sneak a look at my elderly neighbour cutting the grass through the safety of my blinds - but he sees me and waves just as I duck.

Want to talk to someone, anyone. How can they get away with crap like this ? Think about ringing my friends and telling them how I feel before realising I don’t have any. Not real ones anyway, and the imaginary ones are busy washing their hair. Even the rubber doll doesn't want to know. Everytime I blow her up she's got a headache.....

Ring a random phone number instead.
First caller doesn’t last long. Urdu not my strong point.
Thought about ringing the Samaritans, but thought I heard laughing last time.....
One call makes it to the kebab house, and another to GCHQ.
Beginning to believe that randomness does not really exist and that the person taking the piss is on the floor wetting himself.


Finally :-

‘’Hello ?’’

Have you seen the news ?! It says that Chronic Fatigue Syndrome can be cured by talking on Skype

‘’Who ?’’

Exactly. Five million pounds wasted !

‘’Is that you Malcolm’’

No It’s Quilp. If I told you cancer could be cured through your television screen you would tell me I was lying. You would report me to the Advertising Standards Authority. You would threaten me with legal action.


‘’I don’t know who you are, but whatever you’re selling i’m not buying’’

That’s exactly what I said to that lady on the street corner.

‘’I’m afraid I have to go now, there’s somebody at the door’’

Probably ATOS. Unless the ambulance is on its way, your claim is probably dead. Anyway I have to go too.

‘’Why ?’’

Because i’m not well. I need to lie down.

‘’Why what’s wrong with you’’

Ive got M.E.

‘’Oh yes it’s on the news’’

Right, well I’m off then....

‘’Graded exercise that’s what you need, not talking to old ladies like me. Let me put my other half on. He’s nearly finished cutting the grass’’

Sorry must go, somebody at the door.

‘’No please stay, you need to let it all out’’

I’ve had no accidents in the last six years and my windows are fine.

Turn lights out for good. There are some dodgy characters out there.....

Close my eyes and think of life after death. I should be dead by now. I wonder what it’s like. I wonder if this illness dies too. I remember a funeral that took place recently. Everyone saying that ’’he’s gone to a better place’’.

‘’How do you know ?’’ I ask

That look on their faces that said, ‘’well, ok maybe he hasn’t but it’s a funeral ffs, that’s what we are all supposed to say – and agree on...’’

Well if there is life after death I want to be the psychiatrist this time. I’ll give then GET - up and down the north face of the Eiger wearing only their socks.

Lights out again.

Postman comes, and though I never receive anything of interest, the thought that I might makes it the highlight of my day. A letter ! My student loan is updated. I now owe over three thousand pounds.

‘’If you would like to make out a cheque for three thousand five hundred and eight pounds please send to......’’

Lol that was funny


Can’t be bothered turning the lights out.

Back onto Phoenix Rising. Maybe this time it will be different. That reminds me I need to get some light bulbs.

A thread is busy. Thirty three replies in just an hour. Must be something interesting.

‘’Dutch scientists....’’
scrolls down; scrolls down some more. Ah conclusions :-


‘’...... CBT.... GET.... Nothing wrong with you....get a life.....false illness beliefs.....some just want benefits....all mad....some English...some dogs....lying Ba***ds, just want attention. Case closed we are right, that’s how science works. Merry Xmas’’

Light explodes. Decide to call the police.

Decide to take a break, and do so. I stay off Phoenix Rising for over eight minutes.

Log back on. This time it will be different. Decide to read the threads from behind the sofa.

David Tuller – wow that guy is amazing. If I ever get better, I’m going to thank him every day of my life......
Fluge and Mella – never met them, but would love to.
Ron Davis, what a guy. I would have been blessed to have had a father like that.


Come from behind the sofa and put a new bulb in the socket.

Read that Esther Crawley says that ‘’Pace was a great, great trial........’’


After all those brilliant minds said it was an object lesson in how not to do a trial. That the results were meaningless.
Why are these people at war with us ? Crawley says she wants a truce but she launches a hand grenade, and then accuses us of releasing the pin.

Decide to ring Simon Wessely and let him know how i'm getting on whereupon for a few minutes I breathe heavily down the phone.
He claims harassment, but i tell the judge i was just doing what he told me to do. I was ringing him to tell him how the exercises were going....
Judge dismisses the case and tells me I am a warrior. A great leader among men, and a fine example to society.
Instigate legal proceedings against Wessely for harassment.


I deserve a holiday ! I get hold of a world map, close my eyes and point. I change my clothes and pack my bags and move into the cellar.

Thought about all the things I will do when I get better. Only I know what I have endured. In a strange way, what an amazing achievement. I am still alive, when I could have been forgiven for being dead. But it all feels so hollow when there’s no-one there that understands. I mean one doesn’t hold out for a gold medal like the one Wessely’s got; afterall, he’s suffered immensely over the last thirty years. Imagine having to go to Afghanistan to feel safe and secure. No, I dare not hope for that, and I know a knighthood is out of the question. I haven’t done half the things Wessely has done. All those research papers, all those cures, all that black magic, voodoo, sorcery, and stuff. No no, I dare not hope for any of that. But a small line in The Times would be nice, probably in the Obituaries.

Feeling happier. Lights on all afternoon.

Another day over. Standing at my window and thinking about what has been and what is yet to come. I know the truth is coming, but the question is, will it get here before I have to leave. Imagine being there when it comes. Wow. That light might have to stay on a little while longer yet.

Comments

I am so sorry that you are living in the UK and having to go through this. It is awful for all of us with this dreadful disease no matter where we live in the world but England is just nuts. I don't think it will be too much longer until Esther Crawley and Wessely end up looking really stupid so hang in there and KEEP THE LIGHTS ON!
 

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