Thursday, December 28, 2006

Island Hogmanay

I am booked to fly to Islay later today (the small Scottish island where I grew up as a teenager). Nice Man is driving down to The Mull of Kintyre (oh, mist rollin' in from the sea, my desire...) with two of our friends on Saturday to get the ferry across. The BBC weather people have already deployed the phrase severe weather warning in association with the word Hogmanay. Hoots man. I could easily figure out a way to make it all my fault if I apply myself. Instead I found this painting of Islay storm clouds by Ian Gray .
When I lived on the island I remember people having bizarre nicknames. There was a guy who used to drive up and down main street in his car with added spotlights. He was referred to as Beyotnay Beans on Toast. I was sometimes called Paddy (my Irish origin) which was marginally better than Ki-Ki, for which there was no excuse.

Wednesday, December 27, 2006

Life's Gambles

My family have a gambling habit at Christmas. I was upset today as I was too ill to visit Nice Man's family gathering in Edinburgh. Most of my day was a write-off until I joined my own family at our dining table for a few rounds of poker. My sister's man brought us a table-top game board complete with green baize and a plastic inset for each person's chips. He kept dealing cards and saying things like Bronski beat (two queens) a side salad of fours, and a pair of bullets.
I went from exhausted apathy to unpoker-faced enthusiasm. Stuart joined in and hustled my brother John out of a big win by doing that don't mind me, unassuming politeness thing and playing dumb, the shark. When we cashed in our chips my £10 became £19.60. John said I'd be logging on to all through the night.

Monday, December 25, 2006


my template issues, I'm having a few hitches with layout, paragraphing and updating. Ho hum.


Doubt, Faith and Dogged Hope

Will I ever cease to be embarrassed at being ill? It's Christmas day and I am grateful for many things - family, friends, food, shelter - but I am also embarrassed, even ashamed (in a way that I don't fully understand) that yet another Christmas sees me confined to bed for most of the day. I still shudder to think that people might think it is just tiredness and I am baby-ing myself. If you could give these symptoms to a 'healthy' for just five minutes, they would understand immediately. It's an overwhelming feeling - like asthma of the cells, or being on the verge of collapse, or even some kind of blood poisoning. I'm sad that my family have to see me like this on a day when everyone wants to be joyful.
I've been reading more of the whole mind/body theories on Reverse therapy/ Mickle therapy and I confess, it is throwing me into great pockets of doubt and guilt. Of course I'd love to believe that a new mental scaffold of psychological or emotional adjustments could suddenly sustain my physical function and lead the way to better health. I long for this to be true - long, long, long!
Yet, my little 3 year old niece was ill this week with a kiddy-cold. Everyone sympathised and supported her, as it should be. When I looked at her limp and sniffling on the sofa, I didn't think, Hmm, is her inner child troubled? Has she got unresolved issues manifesting as sick-role behaviour? No, she was being the only host she could be for any micro pathogens hitching a ride.
If I think that about myself - ie. I am doing the best I can - then the RT/MT/mind-body improvement path self-combusts and I'm back at the cul-de-sac of square one. Square one is reality and today it's winning. Whatever or wherever square two is, I don't know. In my conflicted confusion, I've got to practise giving myself the acceptance that flowed so easily for my niece.
So, on this Christmas day, as every Christmas, I think of you PWME all over the country in all your hidden struggles. May hope and faith remain.

Thursday, December 21, 2006

Lock up your Spammers

I now get about 12 spam e-mails to every real email in my outlook express. I tried to download free anti-spam software but it asks for your e-mail address and I wondered if this just as the scene in a cop thriller when the police chief turns out to be the top baddie.
Every day I spend ages pressing 'block sender' or making up mail preference rules that are supposed to block e-mails with the word viagra or unbeatable and then I get five e-mails offering me unbeatable prices on viagra. My favourite law in Scotland is the No Smoking law. My second favourite law would lock spammers in jail for 90 days, feed them tinned spam and make them delete hottest offer e-mails until they were hallucinating. Come on governments - get it sorted. In the meantime, can anyone recommend any safe free spamware?
PS. I still haven't figured out how to work these beta labels.

Goodwill Hunting

While flicking TV channels I accidentally lingered too long on the HITS channel's Christmas songs. Ricky Tomlinson's Christmas, my arse song made me want to stick kitchen knives in my arm just to relieve the pain of watching it. Consequently, George Michael's hair in the Last Christmas video came as a blessed relief.
I found a disability activist website where the posters wrote Happy Cripmas to each other. Fair do's.
I had a back massage today from my massage girl. I think of her as having the skill of a neuro-surgeon and the artistry of Michelangelo. Perhaps I exaggerate, but she's damn good. I gave her a bouquet of Lillies and some gift tokens for Christmas and she looked all pleased and surprised and gave me a hug. Don't be so soppy, I said. Naw, only kidding - it's the season of goodwill to all masseurs.

Monday, December 18, 2006

What's that, Life?

When I sleep poorly, I wake up feeling as if mice have nibbled away the coating round my nerves and intra-venous Calamine lotion starts to seem like a good idea.
A lot of PWME get very few colds as their immune systems are underactive on some axes and over active on others. Every winter I hope I won't get some cold or flu-bug on top of the ME. Yet each time I foster this hope, I feel as if I am being cheeky to Life in its grand scheme of things. I expect Life to turn round and dish me out a bug, precisely because I am arrogant enough to petition my case for not having one. I'll decide what goes on here, Life might say in a boomy voice, well within his remit. Is posting this a double bluff? You see Life, I understand your, about that cold you mentioned...
I went to see Nice Man do a few songs at a charity gig last night. I was pleased we got the sofa to sit on. Attic Lights were good too - lovely harmonies.
The other day in M&S, I asked Stuart whether I should buy a jumper dress. He said, I don't have jurisdiction on the jumper dress, Ciara. Useless for the shopper as indecisive as me. They didn't have my size anyway.

Thursday, December 14, 2006

Camp in the Campsies

Myself and Stu boy at sunset. Photo taken by Marisa, after I killed the endangered Scottish wild cat and fashioned my hat from its hide. No but, yeah but, no but. Certainly not but.

Wednesday, December 13, 2006

How's about that, Shep?

If I do one thing a day, my life feels hectic. If I'm in an iller phase, I feel overwhelmed, in a better phase I like it. By 'thing' I mean a hair cut, dentist appointment, night class, local supermarket shop, cafe. These are the building bricks of my life. (What about art? You should write more! Shoosh, alter ego, I'm writing this blog, amn't I ?)
I'm a lover of countryside and in winter I'm almost gasping to get out from the greyness of the city. Recently Stuart drove myself and Marisa halfway up the Campsies (our nearest hills) and it was glorious to sit on a wooden bench looking back over the sun-lit fields to Glasgow. You can see half way to Edinburgh too. My body always relaxes slightly when I can look out to a view. I feel it go aahh. We saw sheepdogs herding sheep and Stuart tried to explain to Marisa the conditions under which One man and his dog was prime time viewing on BBC2. It was the seventies. We had 3 channels. They put it on at the weekend. Eight million people watched Shep chasing sheep into a square pen. Rule rural Britannia.
Later we were the only customers in a small country cafe, except for a hand-crafted Santa doll, and classical Christmas tunes coming through speakers. Stuart said they probably had a dj in the kitchen.
I collected some berried branches (with jaggy thorns) and they are still in the boot of my car, days later. My Christmas cactus is in full bloom. I'm holding off on my plastic tree til I really have to.

Monday, December 11, 2006

Elf Yourself

Got precious minutes to squander? Broadband to burn? Make yourself dance like an elf here... I'll go first, shall I? No, I don't feel silly at all.

Thursday, December 07, 2006

The Herald article - Invisible ME

As you know, this blog is meant to be a mixture of observations on living with ME and living in general. It's been a bit ME-heavy recently and I hope to write about other topics soon, but for the record, here is the recent article from The Herald newspaper.
The Herald (Glasgow), December 4

The invisible sufferers of ME by Alison Chiesa
Awakening to the sharp winter sunshine of December 6, 1986, a young university student believed she had a future filled with potential. Apart from a touch of flu, Ciara MacLaverty, at just 18, was confident in her ability to realise her dreams. Perhaps she would become a writer, taking after her father, Bernard, the Irish author who moved to Scotland in 1975 and has since held university posts in Aberdeen and Glasgow. If not a writer, maybe a teacher, a psychologist, or a dancer. She would then marry, she thought, and have three children.
Time passed and the intervening years brought changing governments, scientific discoveries, and medical breakthroughs. But Ciara never recovered from "the flu". Today, at 38, she has yet to make any of her dreams a reality. Although unaware of its grim significance at the time, that date in December marked the start of a war with Myalgic Encephalomyelitis - a continuing struggle that has left Ciara largely bed-bound for two decades. "I'd never even heard of ME before then," she said, as she lay on the sofa of her home in the west end of Glasgow, "But it has robbed me of what I could have been."
As the inauspicious anniversary approaches, the decision to speak out by Ciara and her mother, Madeleine, her primary carer, is political. It is fuelled by fury at the "gross injustice" being done to the ME community. "I am very ambivalent about having my life exposed," said Ciara, "but I feel I must speak out to highlight a situation that hasn't changed in the last 20 years. Biomedical research into our condition is still being ignored by the medical establishment. We are being made to feel invisible."
Her comments coincide, and have been galvanised by, the recent publication of a new independent report, the Gibson inquiry, which calls on the government to "invest massively" into researching a physical cause for ME. Released by a committee of MPs, and led by Dr Ian Gibson, a Scot, the inquiry took nearly a year to complete and found that many of the estimated 250,000 people in the UK with ME are written off as neurotic because a minority have been misdiagnosed. It also concluded that the medical establishment's belief that ME is "all in the mind" has biased research against investigating a physical cause for the condition. Most funded research studies have been directed at psychosocial management strategies, such as pacing energy levels and coping with limitations. "This is a bit like using carrot juice or exercise to treat cancer, or talking therapy to treat Parkinson's disease," believes Ciara, who spent the earlier years of her illness with a constant migraine-type headache, so severe that she would bang her head against the wall above her bed in a futile bid to relieve the pain.
Although currently slipping into a relapse phase of her fluctuating condition, her determination not to be portrayed as a victim is firm. She dressed, washed her hair, and put on make-up before being interviewed, even though this exhausted her to the extent that she had to retreat to bed for the rest of the day. Like many sufferers, who feel their whole system is "poisoned", she finds demeaning the popular term used to describe her condition - Chronic Fatigue Syndrome. Welcoming the inquiry's findings that scientific research into ME may lead to a proper diagnostic test for the condition, she said: "It is as much about extreme tiredness as Alzheimer's is about extreme forgetfulness. ME should be recognised as on a par with end-stage MS or cancer." Having renamed her condition the "Living Death Syndrome" it leaves her, at its worst, in constant severe pain, unable to sit upright because her brain feels like it is "slopping about in a solution" in her skull. She has also gone through periods of being unable to see properly, chat, or hold a knife and fork. Her mother, Madeleine, whom Ciara admits "bears the brunt" of her battle, has had to cut up her food for her, and even wash her hair, while she has lain pained and exhausted.
On better days, however, she can venture out of bed for around three hours. If she feels well enough to step outside, she must travel even short distances by car. She also wears earplugs in public places. Her sensitivity to noise is so extreme, that even the sound of a hand dryer causes "wincing pain" through her skull. No conventional coping treatment has helped. Neither has the £15,000 worth of complementary therapies she has paid for in her desperation to lead some semblance of a "normal" life. "You clutch at anything," she said. "What you're really clutching at is hope. But there must now be definitive scientific research done. I want someone to be paid to look through a microscope."
Her mother could barely contain her frustration when asked to sum up how she felt about seeing her daughter's potential drain away. "I have had to watch Ciara suffer over the years and she's as ill now as she was 20 years ago," said Madeleine. "She has missed out on so much. I've gone beyond being sad about it. Now I'm just so angry because nothing is being done. This does a gross injustice to ME sufferers. I've been so frustrated I've even considered lying outside the doors of the medical research councils in protest." She added: "While not wishing to take away from other causes, I get angry when thinking about how much money is put into researching something like bird flu…Yet, here are all these people with ME being ignored. Some are being drip-fed, others are reaching the age of 20 without ever having gone to secondary school."
Around 25,000 children are thought to have the illness in the UK. According to the ME Association, it is the biggest cause of long-term sickness absence in schools. On the MPs' report, which also finds the UK is falling "way behind" other countries on ME research, Dr Charles Shepherd, medical adviser to the ME Association, said: "Those who have been named and shamed in this report can no longer ignore its very powerful messages."
One of the few charities worldwide that is privately funding biomedical research into its root causes is Perth-based ME Research UK (MERGE) which last year uncovered biochemical abnormalities in the circulation of adult ME patients, suggesting a persistent infection that keeps the immune system working overtime. Dr Neil Abbot, its director of operations, welcomed the report's assertion that "the origins and causes of the whole ME problem will only be found through further scientific research". He added: "This is a vital step. It is marvellous that the inquiry has recognised psychology cannot be the answer to the illness, and that the 'UK precedence [that] has been given to psychological research' should cease." Ciara believes a cure can be found in her lifetime only if policy-makers pay heed to the report. While she waits, she is at pains to achieve "bite-sized" pieces of past dreams. Spending time with her younger sister's children is a great source of joy. She has also published her first collection of poetry. It was written largely while bed-bound, from where she could look into a townhouse used by the medical research department of Glasgow University. Her collection, Seats for Landing, contains a poem called Overlooked, which she hopes best describes her "incarceration". "I try not to think too much about the future," she said. "I live one day at a time, appreciate the smallest things, and take nothing for granted."

Tuesday, December 05, 2006

Not the Spotlight of Malady!

I did an interview for The Herald this week re my 20 year anniversary of ME (the night a virus came to live in my brain!) and the recent Gibson report that calls for more biomedical research into the dastardly causes. I confess I do these articles with a heavy heart, always wishing someone else would do them instead. Get thee away, oh spotlight of malady. But the responses and thanks I've had via e mail have been consoling and heart-warming. A difficult aspect of ME is feeling you can't help others as much as you'd like, so it was good to feel that the article expressed other people's feelings too. If the copyright thingy allows me, I'll post the article later.