Suction Please

I like my Irish female dentist but today when I was head-down in the chair and she was drilling a filling, she and her dental nurse gave a little, 'oh,' followed by an embarrassed laugh and it made me wondered if suction please nurse was up to the job, or had I just swallowed a chip of mercury? Nice. When they were finished, I asked if I had filling on my face. Oh no. Outside in the street, I took out my hand mirror and there was grey dust on my lips and cheek. Pass the plastic sheeting and I can be Laura Palmer from Twin Peaks.

-C

Are you a NANE?

Do you remember that saying, 'Never Apologise, Never Explain'? (NANE). I am not good at being a NANE. I feel like I should toughen up into being a NANE. I am one of these people who will explain that I am going to the kitchen or the bathroom, rather than just walking out of the room or saying 'back in a minute.'

I have been posting less on the blog - and here comes another explanation - as I am caught up in trying the highly controversial Mickle Therapy. I don't wish to dismantle it here on the blog. It is still very early days and there is heavy crossfire of opinion - both in my own head and on the web. I almost feel like a traitor to the cause for trying it. Sssh, stand tall, be a NANE! Dinny flatter yerself; the world can take it.

It is good to see a slight stretch in daylight hours: that extra hem of the day at 4.30pm.

-C

Random Blog Fame - what are the chances?

I have never before met a complete stranger, talked to them for about 20 minutes and then see a light bulb come on over their heads and have them say, you've got ME and you write a blog, don't you? Cool! I was at the ever wonderful Celtic Connections Club and I was sitting, by chance, next to a man called Liam who said he'd found my blog after reading the Herald article. One of his close friends had ME so he read quite a lot of the blog. I told him that although I was out late, I had been in bed for most of the afternoon and he said a lovely thing. He said, you don't have to justify yourself to me - it's just good that you're out living a little bit of life. What a great thing to hear.

-C

Rabbits in Hats

Hello again friends. I have been taking a break from frequent posts so I can try and get myself out more. I am still in the throws of that universal existential dilemma - Hope verses Doubt. Hope v's Doubt (with it's variant Hope/Denial v's Doubt) is particularly apt in ME.

Today I find two articles that exemplify this split: Click here for a study that finds 'cynical distrust' is highly correlated with inflammatory blood markers and can lead to increased risk of heart attack. Ah ha, I think...it's not just us who are being scrutinised by the mind/body school of health. Ah ha..., perhaps practising having a trustful, open mind will decrease inflammatory markers in most illness?

This cautious reasoning lasts until I read this comprehensive article from The Times about the state of knowledge on ME today.

Quote- (On CFS), Dr Klimas says that even its name belittles the extent to which it debilitates patients' lives. "If it were called chronic neuroinflammatory disease, then people would understand it," she says. "Until today nobody's been willing to change the name, but now there's proof that inflammation occurs in the brain and there's evidence that patients with this illness experience a level of disability that's equal to that of patients with late-stage Aids, patients undergoing chemotherapy, or patients with multiple sclerosis."

Yikes. Yet I know, as I was that severely affected aged 18-22 and in relapses since. And yet, I really want to believe that (in the absence of IL6 blockers or anti-viral drugs) some kind of mind/body jiggery-pokery could help me. If it could even help with outlook and management and make me more content? Call me car-azy, but I'm looking for rabbits in hats.

-C

Hey Ricky, you're so fine...?

Here is a link to Nice Man's blog where he prints Ricky Gervais's email with permission. They have exchanged a few emails and I think that Ricky may play the ME routine a bit differently in future shows, stating that ME is real, and perhaps using the clear irony that he gives other routines.

I think it's laudable of Ricky Gervais to enter into a one to one correspondence with someone who was offended by the routine. It is also a testament to Nice Man's diplomacy skills. I would not have expected Ricky (or anyone) to respond to a 'you are horrible and unfunny' type email. To arrive at this position feels like a kind of comedy Darwinism - various events coming together to morph the comedy into a more adaptable and viable creature. If it's truer, it'll be funnier.

I really wanted to give Ricky the benefit of the doubt. I said I might never feel warm to him again. And now I do. I can't help myself.

-C

Ricky Gervais writes to Nice Man

I don't know what to think! Initially I am pleased. Readers will know from a previous post about Ricky's jokes on ME. Nice Man had written him an email saying the routine perpetuated a degree of misinformation and denigration that could only harm the ME cause, and that unlike Ricky's other illness comedy, it didn't come across as being ironic. I won't quote Ricky's email directly (nettiquette and all that) but generally he writes that it is never his intention to cause offence and his routines depend on the audience seeing him in 'ignorant bigot' persona (ie. exactly how I see him in the other routines).

Anyway, I know others may still be angry at him and I too will still be frustrated if the DVD of his gig fails to convey his intended irony and still gives the impression that ME is a any kind of choice. But....I do think the email he sent was personal and sincere. I always want to see the best in people. I'm glad he wrote. Maybe he'll try and approach the routine differently (?) maybe not, but he has obviously given it thought and taken the time to write a personal email. I never feel comfortable holding grudges. I was looking for a way to feel better about it all and his email has helped.

-C

Celtic Connections and 3am Haggis

My regular sleep times are roughly 3am to 10 or 11am (midday if I'm relapsey) and usually I'm okay this. My friends who have kids and careers all fall asleep about 10pm and get up at 6am or 7am. People ask, but what do you do at 2am?

In January, if I'm well enough, I love to go to the Celtic Connections club. It runs from midnight to 4 or 5am and it feels like an exotic secret. There may be three or four hundred people there, but they are mostly friendly people who can play fiddles, accordions and flutes, people who defy the conventions of sleep and eat haggis and chips at 3am and whoop along to an eightsome reel. For a few shiny hours, I am one of those people. I have no instrument, of course, but I am a valuable audience clapper. Nice Man introduces me to his folky friends. The atmosphere reminds me of the old days on Islay, when everyone knew each other. I feel Celticky at heart. I am glad to be out at 2am, even if I spend a couple of days recovering.

-C

Ricky Gervais and ignorance

Dear Readers, I need you tonight, to vent my frustrations to. I am just back from the Ricky Gervais stand up show where he has a routine that suggests having ME is a work-shy indulgence as opposed to a serious illness. We will come to that shortly. First I shall say that I had read a preview of the show (briefly mentioning ME as one of his controversial topics) and I was in a two day long dilemma as to whether to go or not. In that time I wrote Ricky Gervais a letter telling of the severities of ME. Nice Man also wrote and thought we should sell the tickets. However, some of my family members and pals said it was hard to judge from a review and I might as well go and then defend or criticise. I considered it might be defeatist to avoid going. I reasoned I should face the supposed attack and then be in a position to give a report or opinion. So report I shall...

Firstly can I say that Gervais chose to be risky about illness and disability in general. There is a sketch about taking a neighbour's autistic kid to the casino instead of the zoo (a la Rain Man). Controversial, yes, but we all know that autism is 100% real and can be life-wrecking. Next Gervais was making gags about how he believed all obesity was self inflicted and not an illness. Then - my stomach tightened - he said how he'd seen someone collecting for ME recently. Quote -ME? Not MS - not the crippling wasting disease. No, the thing that makes you say 'I dont wanna go to work today' (here he adopted a self-pitying tone and mock lethargy). The audience guffawed and broke into spontaneous applause. He said that Africans wouldn't get ME because they have more serious concerns like getting food and water. Cue his sketch about one African asking another weakling ME African to go and get water from the well. More huge laughter. At one point Gervais did conceed that it was a 'cheap gag' but that a person with ME couldn't run after him and fight him.

I usually pride myself on being able to take a joke in any circumstances, but the horribleness of this is that Gervais is perpetuating the myth that ME is a choice. This man has sold five million DVDs worldwide. He will do this routine to thousands of people every night. He may sell another million of the follow-up DVD. I call on the ME charities to do something drastic, something effective. This disbelief has been going on for decades. There is hard scientific evidence out there that ME can be every bit as severe as MS. Where is the missing link? How can Ricky Gervais get an audience to support him in implying we're molly-coddled fakes?

I came out feeling like I'd been bullied in the playground. I loved The Office but I don't feel I can ever warm to Gervais again. Maybe Nice Man was right and we shouldn't have gone. Maybe it is important I was there to highlight how misinformed and harmful to the cause the routine was. I welcome anyone who wishes to write to Gervais c/o his company. I don't think there is any point in writing viscious and critical letters - just a short letter telling how your life has been affected by ME would do. If you were the African with ME and couldn't walk to get water from the well, you'd die, let's face it. Oh what a cheery night of comedy!

-C

PS. Permission to repost this anywhere.

PPS. I am told Ricky's agent is D Hayes , dhayes@pfd.co.uk. I don't want to harrass anyone - that would be counter productive, but there it is, if you feel strongly and want to send a short and civil email.

Lucky Break

Happy New Year to all. I'm still enjoying the after-glow of the fantastic time on Islay with friends. I got lucky and managed to sustain enough health to have a few great days. The winds reached 85 mph and we watched spectacular waves crashing on Machir bay and uninterrupted rainbows arching over miles of peat lands. We played poker and listened to Willie Nelson. We had a candlelit power cut, brief enough to be exciting, conveniently ended by dinner time. Our garden backed on to a sandy beach - thank you Tom for generously lending us your great home. I was happy and brimming with gratitude. I can't really say more than that. I'll post photos when I get them.