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.

Thursday, November 30, 2006

Best Scottish Poems 2006

I am honoured to be picked along side these great poets (names, sweetie, names!) as part of the Best Scottish Poems 2006 selection, as chosen by Janice Galloway. Janice The Trick is to Keep Breathing Galloway! I thank you kindly.
PS. For those, like my parents, who know not where to click and say, but we couldn't find your poem, click here .

Wednesday, November 29, 2006

Late at night, mystery bike

I'm definitely batting below average. I find myself avoiding phoning people when I have no news to report other than being horizontal for days. Reading is a struggle to concentrate after ten minutes. I feel like I've been accidentally doped - until 3am and then I'm ready to chat about the existential dilemmas of life and the world is asleep. Can I just be a tormented bohemian who is above the conventions of night and day?

I went to visit Nice Man last night. We watched Mighty Boosh episodes on DVD with Nice Man flatmate, Eugene Eugenius. We all lie on separate sofas with the lights off. It is cosy.

When I left to drive 3 streets home again, I found a mountain bike abandoned on the pavement. The back brakes had locked (or broken?) so I couldn't push it far. I couldn't fit it into my wee car. I left it propped against a lamp post, oh mystery bike.

I need more photos in my blog. Here is one of Nice Man on his recent trip to Japan. He doesn't always read my blog so I might get away with it before he says, Aww, no, don't..... I like it though.


Sunday, November 26, 2006

Summary of Cheney Lecture

Hmm. After another stuck-in-bed weekend, I will try to summarize the Cheney lecture. Okay, bear with me.
Dr Cheney believes that part of ME / CFIDS is actually a heart disorder. His data shows that our hearts are anatomically intact but the left chamber is slow to fill and we are pumping as little as 60% of what we should be. The blood pressure and volume is not up to the job. Not even close. This has a huge negative cascading effect on the body - cells get hypoxic (starved of oxygen) and we feel as weak as someone with heart failure. When we try to over-ride our severe limitations, the body floods us with adrenalin to try and compensate. The effect is like trying to live on speed and the inevitable and frequent crashes are...well, inevitable. It's no wonder we have to stop - the system requires more fuel than we have to give it. The fall-into-bed factor is not 'fatigue'. It's the body's way of protecting itself for what is essentially an acute crisis of physiology.
The knock on effects of 'running on empty' are too many to mention. The blood chemistry is a mess with chemical alarm signals fighting it out with the body's attempts at compensation -which are counterproductive- eg inflammation, vasoconstriction, down regulation of hormones, etc...
And if we go to a cardiologist? Cheney says we'll most likely meet with ignorance and be sent home because our hearts are anatomically (although not functionally) normal. What caused this dysfunction in the first place? Place your money on a virus.
Treatments? None that work. That old chestnut. Cheney recommends always getting your feet up when possible (to increase blood flow to the upper body) and isotonic drinks (ie water with salt in). In the long term, he'd love to see if injecting stem cells into heart muscle could help. Jeeze. Who's going to be a guinea pig for that one? Another approach is a tablet with pig heart extracts in it. Ditto.
So there you have it. I've taken my blood pressure every morning this week and it's usually 94 over 50. Normal is 120 over 80. I feel like a semi-deflated balloon at a kids' party. Hell's bells. Hold on while I treat myself to another glass of salty water...
PS. Sometimmes I wish I didn't know things so I could just kid myself that I was a bit tired. Ah well, we need people like Cheney. All power to him.

Friday, November 24, 2006

Dr Cheney Lecture

Hello again, excuse me for neglecting the blog. I'm still catching up with the everyday. In the meantime, here's a link to a lecture on CFIDS / ME by Dr Cheney. I believe it's 3 hours long! I'm starting to watch it in stages...

Friday, November 17, 2006

Niece work...

Greetings friends and thanks for all the valuable comments. My blog debate is just hotting up and I'm away for a few days to visit my nieces, so I'll get back to you when I can...


Tuesday, November 14, 2006

Experimental Treatments - 2

Okay, I feel the need for a follow-up post. Thank you to everybody reading or getting involved in the debate - either via comments or email. Debate is welcome.
First thing -I don't ever want to deride anyone else's experience of how ill they are (or were) and how much or little they improved. I am humbled when people write to me to try and help me, by spreading the word about whatever path helped them.
I just wish science would help us get to the bottom of this disparity. Is that the right word? This lack of consistency. There are obviously different forms of ME and CFS. My dear friend, Stuart was very ill for several years with crushing fatigue and he recovered to 99%. He never had the neurological / head symptoms that I have, but I don't doubt he had some sort of profound, immune-related illness. Many people suffer terribly and do get better, but a significant number remain ill for life. What is going on?
I would love if any of the mind-body therapies could help me. And I believe applying some of these techniques can help us adjust to life as-is and promote peace of mind, lessen stress etc. But they have never helped my physical and neurological symptoms. (Even beginning a sentence with a 'but' makes me feel like a but-but-but naysayer). And yet... and yet! This is my honest experience and that of thousands of PWME.
When people get cancers there are multi-faceted reasons why some will die and others will live and all the mind-body mysteries are some part of that. One would assume that positive thinking could only help. I read a study a few years back that said it wasn't as big a factor in recovery as expected.
I do advocate being positive as much as possible - whatever that means. Being positive can mean wholly accepting life as is. Making the best of life's randomness.
We really need a definitive diagnostic test for ME/CFS. Will it separate the ME from the CFS? We need answers to these confusions as to why many remain stuck at such low levels of function. And to those who improve: celebrate. There's no reason not to.

Monday, November 13, 2006

Experimental Treatments

Every so often I get emails from PWME on the subject of the controversial methods (treatments?) that go by the names Reverse Therapy, Mickle Therapy and Lightning Process. These talking mind/body therapies have only recently appeared in the world of ME/CFS. Now, if I myself were helped by something, I too would spread the word like a tambourine-shaking evangelist, so I am not offended by these stories. I am, however, baffled by them. Completely baffled. I don't understand how rearranging the mental furniture could cure ME, any more than it could cure MS or Epilepsy or Parkinson's. Yet I cannot deny that some people seem to benefit. Do they have the same illness?
I always try to keep an open mind and when I heard about a local hypnotherapist working with PWME, I gave it a try. Long story short - it did not work. Perhaps I did not try long enough but in the end the hypnotist implored that if I didn't believe in him, the outcome would be 'hopeless' and if I did believe in his treatment, then 'it would work'. God, I tried so hard to make that quantum leap in my head. Yet it seemed an ingenious unfairness to pin it all on my beliefs and not his.
I had watched TV hypnotist, Paul McKenna work intensively on a woman with MS to help her get to a family wedding. There were short term, short-lived improvements but McKenna was adamant that he could not cure this woman; he could only give a brief lift to her mind and spirit. She made it to the wedding and the cameras departed after that. I can only guess at the payback.
The other thing about these treatments is the cost. For a full course, you are talking £500 - £1000 for starters. If the therapy was free, I'd try it all. I'd give it hours of effort. Ditto if the therapists gave money-back guarantees. If you paid £49 at the hairdressers and your hair wasn't a millimeter shorter, you'd ask for your money back - why is this different? Therapists have always rejected my request for no improvement / no fee deal. Come on, therapists. Anyone want to prove themselves? If you have real faith in your methods, I'm here. If I get a sustainable improvement, (say, 50% improvement) I'll pay twice or three times as much, and I'll recommend twenty friends. I'm open.

Thursday, November 09, 2006

Not Nothing?

I have just 'upgraded' to Internet Explorer 7 and it's taking a while to get used to it. My blog settings look different and IE6 knew all my passwords and now I'm back to guessing. How did you live without this interesting information?
Somedays my eyes feel very tired and vanity starts me wondering about the potential benefits of those wee tubs of eye cream that cost about £57. But I don't believe the hype. Have you noticed how they always claim to 'smooth the appearance of fine lines' as opposed to just smoothing wrinkles - which of course they can't do.
I have stopped reading my horoscope for the first time in my life. It feels quite liberating. I never believed in it, but I'd have a compulsion to read the Capricorn paragraph anyway. Then I'd read Virgo and decide it suited me more.
I am waiting in for a TV aerial man to climb into my attic and rig up my new neighbour's TV. Such is the way that quiet hours are passed. I am not doing nothing. I am being a good neighbour and a cog in the wheel of public service broadcasting.

Sunday, November 05, 2006

Small salvage

Occasionally I manage to salvage more quality out of a day that I expect to. In general, my 'battery' feels acutely drained, but it was soothing to get out this afternoon with Francis to the new Tinderbox cafe where our friend, Krista, has opened a small shop at the back of the cafe. It sells artsy things and has sofas and halogen lighting and a piano. The air smells of ground coffee and new things. It was good to sip tea, eat cake and gaze at stuff. Gazing at stuff is a useful analgesic for me, with a half life of about hour.
I'm happy to be home now to the autumny smells of fireworks outside and warm radiators inside. And David Attenborough's Planet Earth will be on TV later with world class polar bear footage. Cheers Dave.
PS. I got borderline weepy when the male polar bear died due to lack of food. I'd be happy to sacrifice an aesthetically-challenged walrus without tears. Shame on me and my animal cuteness hierarchy.

Saturday, November 04, 2006

Go on, treat me...

As I wake up this morning feeling like a wrung-out dish cloth, it's time for another ME-related, where do we go from here post. 'Normals' can look away now if they don't want to know the score.

My favourite writer/researcher on ME is Dr David Bell. Click here for his excellent website. He focuses on the issue of low blood volume and orthostatic intolerance, which I believe is key. He has discovered that many PWME have reduced blood volume, some as low as half of what we are supposed to have. If you lost 40% of your blood in a car crash, you'd die. If you lose that slowly over time (in ME) you feel like the living dead.

Dr Bell has treated some patients with saline injections (water plus salt to increase blood volume) with a degree of success. There are risks of getting additional infections but for some people, the benefits of increased function outweigh the risks. I tried taking oral salts in the form of a product called Recuperation. A lot of PWME online claim it helps them (over time) but it irritated my stomach and I found no benefit. I've got sachets of it stuffed in a drawer unused.

I'd love to have access to more specialised assessment and possible treatments. I wish there was some kind of Europe-wide scheme where I could go to Kenny DeMeirleir's clinic in Belgium and get tested for all sorts of sub modalities that may be influencing the bigger picture. These tests do exist but only at a high cost. Can't the NHS fund us? If we go along to our GP's they can offer us virtually nothing.

All treatment is trial and error. It's another bright Saturday and I'm feeling trapped by my body again. I want to go to the healthcare casino and put my chips on the table. There must be something else I could bet on?


Thursday, November 02, 2006

Make-over programmes

How do I get sucked into these house make-over programmes? It's amazing how I can watch 50 minutes of footage made from shots of cement mixers, men in hard hats, and close ups of skips (dumpsters to you in the US); just to get to ten minutes of the camera panning around the inside of the finished house to mellow chimey music and me thinking, wooow, great conversion, fantastic bathroom, but I would never have picked those curtains....

It's the same with You are what you eat and What not to wear. I'd be happy to have the whole programme edited down to four and a half minutes. I could then use the other thirty-five-and-a-half minutes to surf aimlessly around the internet.


Tuesday, October 31, 2006

A Serry Story

Excuse the lull in posting, dear readers. I was about to say sorry for the lull, but we need more clarification on the word sorry in our language. There is sorry as in, it's all my fault and I messed up. If you want to go the whole hog, you can think, sorry, it's all my fault and I'm generally rubbish. (Not recommended)
Or there is sorry as in, I regret that...The two meanings get blurred all the time. We should have different variations on the word, like I'm serry (regret but no guilt).
My weeks have settled into a decent enough pattern. If I get sufficient sleep and rest I can get out for an hour or two, most days. I love my creative writing class on Tuesday nights. I love talking and having opinions. At times I feel quite cheerful. For this, I am not at all serry.

Wednesday, October 25, 2006

Wur selfs

Sometimes I wonder if it's a bit cheesy to put here we are photos on my blog, but I had a request so here are myself and the Frankster at the recent wedding.

Competitive Spirit

Years ago I went through a phase of entering competitions. I'd read that it was easy to win, once you'd learned the formula for writing winning slogans. I tried to win a Valentine's weekend in Amsterdam with Cross pens. My slogan was something desperate like...When our tulips cross I'll have something to write home about. I got third prize which was a Cross pen worth £30. The pen didn't write very smoothly, so I'm ashamed to say, I took it to a pawn shop. They offered me a tenner and I declined. I think it's still hiding in a presentation box in a bottom drawer, beside old passport photos, an empty deodorant bottle and a tartan hair scrunchy.


Thursday, October 19, 2006

Glasgow popster weddings

These are some photos of the guest house where I have booked a room for this weekend. I applaud a good website that makes the place look inviting. Francis and I are invited to a wedding nearby which will have a high percentage of guitar strummin' C86 Glasgow indie popsters. I didn't even know what C86 was. I still don't. You don't either, huh? Apparently it's a tag for some of the lo-fi Glasgow indie bands of the '8o's. Now most of them are Glasgow lo-fi popsters in their 40's.

It's just a weird coincidence that my close pals are musicians. My friend Stuart took me to some of these gigs before his band Belle and Sebastian had their break. If I wasn't tone deaf I'm sure I would have ended up playing or singing with him somewhere along the line. I draw the line at shaking a tambourine in a desperate manner.

I was once offered to fly to New York with B&S to take photos but I wasn't well enough. When their American label boss flew from NY to sign them, I made him a cup of tea at my tiny flat and offered him some maltesers. His stretch limo was parked in the back lane and I offered to bring out a cup of tea for the chauffeur too. The chauffeur politely declined. I think he felt he had to.


Wednesday, October 18, 2006

Cons and Pros and Never Knows

When babies are born in soap operas or TV dramas you can always tell it's a month old baby with a bit of make-up gunk on its head. When I see real births on TV, my eyes usually water with tears. Before I got ME, I always presumed I would have children one day. I never questioned it. With ME it is a very difficult, almost impossible decision. I am nearly 39 so timing is not on my side.
I am more philosophical about everything in life though. My aim is to look for the positive in whatever life does or doesn't throw at me. Perhaps people underestimate the value of freedoms that come from not being a parent, and for others parenthood is hailed as the best thing ever. It should be possible to make the best of either path. Surely? I'm enjoying reading a blog by a new mother with ME called Sofamum . I haven't figured out how to post permanent links on the side of my blog yet, so I'll flag this up here.


Sunday, October 15, 2006

The tilt of October

Well, I am always heartened to receive I like your blog emails, so thank you amigos. You've spurned me on to another miscellaneous posting.
I'm enjoying the unaturally mild October weather. I said today that October was a tilt month and Francis looked at me quizzically. You know...that pleasing tilt into autumn? A sense of planetary motion absent in other months. February doesn't tilt so flagrantly. Or July.
I found a great site where you can listen to poems in bite-sized chunks, as if choosing sweets from a tray of Milk Tray. (It's been years since I ate those '70's chocolates - but I remember relishing the variety of the plastic tray before narrowing the choice down to Coffee Cream or Caramel Keg). Anyway, this link is to a Billy Collin's poem and you can browse the selection by theme or by poet.

Friday, October 13, 2006

Tell me this...

My late granny used to prefix her questions with the phrase, tell me this and tell me no more... She would ask the same questions over and over again. You're not one of them oul' vegetarians, are you? Are those shoes comfortable? (with an expression that suggested the answer couldn't possibly be yes). If she didn't like a new food she was offered, she'd say, I wouldn't die if I never saw it again or, them to their fancy and me to my Nancy. If she forgot your name in a moment of confusion, she'd refer to you as Fanny Bluehole, or occasionally Fanny by Gaslight. She was a gay icon without realising it.


Monday, October 09, 2006

ET Phone Home?

Just a quick post to say I woke up to find my landline kaput, which means I can't get online at home and/or chat to friends. What an uncanny vacuum. Lord have mercy! They are trying to fix it and warned me it could take up to a week. I refuse to entertain that timespan. Oh speed ye digital engineers. I am trying to read more, inbetween the usual 'comatosing'.


Sunday, October 08, 2006

That Weird Head Thing

Thank you to those of you who have written to say you recognised aspects of yourselves in my posts. Today, I'm living the delayed response to The Springer Spaniel Hyper Phase, otherwise known as That Weird Head Thing. It approaches slowly but surely like a rumbling storm - the hot and cold shivers, the dizziness followed by an acute 'sea sickness' and finally a steady inflammo-head for a day or two. Oh, it knows what it's doing alright. It's a master of stealth. One could almost applaud it's Machiavellian ways. I felt bad at having to cancel an invitation to dinner with friends.

Still, Francis cooked us a mean prawn and chilli stir fry. And he does look good with that new haircut. Blessings be counted.

Friday, October 06, 2006

This is Planet Earth

I'm the kind of person who loves poring over maps so I enjoyed my first spin on Google earth. If your PC has a high enough spec, you can download satellite images of the roof of your house - or anywhere else in the world you want to nosey at. Amazing technology.

I had a lovely evening with two great girlfriends. We have so much to talk about. Sometimes I get a bit hyper and am the conversational equivalent of a Springer Spaniel: excitable yet lacking direction, in need of benign discipline.

After yesterday's house-swap desires, my wish has been speedily granted. A kind and generous friend has offered to lend me his house on Islay for a few days at New Year. I feel much Springer Spaniel type gratitude.


Wednesday, October 04, 2006

House Swap Ideas?

I have a policy that if a neighbour knocks at my door to ask about some communal matter, I'll invite them in to sit down, as opposed to discussing it in the doorway. I've noticed that this isn't the norm and usually people do not invite you in. Scottish people seem to be more guarded about their homes. Another friend agreed with me, that as a child and a teenager he'd be left waiting on a doorstep for his friend to come out. Perhaps he'd be invited to stand in the kitchen, but never in the living room.
I don't want to be this guarded. In fact I was wishing that there could be more scope for informal house swapping. For example, I could swap friends of friends, and they could have a few days in Glasgow at the shops and city attractions and I could have a few days in the countryside. Yin and Yang.
There are many official House Swap sites, but I think most of the people who register travel widely and lavishly. Who wants to swap a 10 bedroom mansion on Long Island for a one bedroom flat in Glasgow? I'm thinking on a more accessible scale. I can cat or dog-sit as well. Log fire and a sea view? Now we're talking...

Monday, October 02, 2006

If you say so

Regular dialogue inside my head -

C: You haven't written poems or stories for ages. You really should apply yourself...

C: I feel wiped-out right now. I barely have the concentration to read, so why should I be expected to write?

C: Well, given the choice, you occasionally get out to meet friends and drink herbal tea in cafes. You should have written a novel by now.

C: But I'm alone most of the day and I like my friends...

C: (Folds arms, sighs). Okay, I'll let you off for today. Call me tomorrow.

I sometimes try to use a method called The Work, which challenges every stressful 'should' thought. 'I should write more'. Is that actually true? It doesn't have to be. For an Irish Catholic, I carry a lot of Calvinism.

At least I'm not suffering from the delusion of X factor contestants with their wholesale hysteria that their mental health hinges on just getting through to the next round because fame means everything to them and they 'eat, sleep and breathe singing.' How did fame come to be valued as the panacea?
I'm going to cook corn on the cob. I was afraid of it as a child - it was too unwieldy and yellow-tasting. Now that's the good part.

Wednesday, September 27, 2006

Physician, steel thyself

I went to see my doctor today and he had just returned to work after being off sick for three months. Years after I got Coxsackie B virus, he caught it (from elsewhere!) and he told me he would go home from work at 6pm, fall straight into bed and then sleep through till the next morning. He said he felt, 'like he was dying.' So, he was (is?) still struggling and he said that they wouldn't give him all the tests he wanted. I said, there's a policy of 'not encouraging us' with high-filootin, 'extra' tests. It almost felt like we were pals more than doctor and patient. I hope he's one of the luckier ones.
One of my poems was chosen by The Scottish Poetry library for their web page of Best Scottish Poems 2006. A lovely surprise. I'll post a link when it comes online.

Sunday, September 24, 2006

Cats and Yoomans

Sometimes I miss not having a cat. But it has to be the right cat - you can't have one with ADHD that wakes you up in the middle of the night. I read today that some (most?) cat litter has carcinogenic dust in it and that cat asthma has increased since its introduction. Blimey. My brain seems to have an almost limitless capacity for collecting 'health risk' facts. I'm turning into Woody Allen.
My 2 year old niece was given a story tape about caterpillars. She eagerly reported to her parents how the story tells of yoomans living up the up-pipe and according to her new caterpillar perspective, yoomans were scarey creatures. Her dad explained that she is, in fact, a human, as we all are and there is nothing to fear in this respect. She replied, 'but I don't want to be a yooman.' Ya gotta love that existential angst. See? Woody Allen, I tell you.

Tuesday, September 19, 2006

Island Life

Oh, the joys of the countryside; the recharging powers of nature. I'm back from 3 days in a cottage on the Isle of Arran, courtesy of kind friends (the same couple who invited me there in Spring). Echoes of my previous island life came back to me - the sense of small community, the philosophical acceptance of weather like this one day, and lightning storms the next day. It was just so relaxing.
I went horse trekking along the beach. I was the only person in the trek (bar the instructor woman) who wasn't 8 years old and wearing pink. (My never being allowed horse lessons as a child may have some bearing on this fact). They all had wee comedy ponys with pot bellies and I had a docile mare, who showed a touching patience to my amateur rein pulls. I rode past a lolloping hare the size of a small kangaroo and several excitable collies.
We went to tea rooms and ate great homebaking in bad Kagoules. There were Motorhead and Iron Maiden T-shirts in the local bar, just like 1982. Alert the Scottish Heritage Trust: wearers might be eligible for funding.
At night the stars were amazing - I'd forgotten about the wonder of stars in the countryside - and the cows would give an occasional low moo, scared of nothing at all in the thick blackness.

Thursday, September 14, 2006

Are you what you eat?

I got 88% on this How Healthy is your Diet quiz? Go on kids, give it a try. You know you don't want to...

'I'll just have to....'

I realise that there are so many times in my life when I tell myself, I'll just have to manage... I just woke up from a dream where I had gone to visit friends in England and I felt deathly after the long train journey. I had to lie down while the friends starting socialising and drinking. I wondered how long it would take for me to 'recover' enough to join them. Then F-boy came to tell me that we had to go back to Glasgow the next day on bicycles. He said it would take about 4 hours. I remember thinking that the train took 4 hours, so wouldn't bicycles take much longer? Even for a trained cyclist, this was quite far. And all I could think was, I'll just have to manage. C'est la vie. Don't throw a spoke in the wheel or a spanner in the works. Bonkers. Sado-masochism! (That should get me a few more hits on google).

Tuesday, September 12, 2006


I was amazed to read this article that tells of patients in brain damage states who experienced miracle recoveries or remissions after they were given a sleeping pill; and it turns out to be the same sleeping pill that I take 2 or 3 nights a week if I can't sleep. Wow.
Years ago, I remember taking a different sleeping pill and once I mistook the tablet for a vitamin pill and took it in the afternoon. After I realised my mistake, I didn't feel sleepy which surprised me.
I'd love to see a TV documentary about this. The tablet helps an estimated 60% of cases so far. I'm happy for the people who get to see their loved-ones wake up.

Sunday, September 10, 2006

The Weekend Syndrome

Sunday night and once more I have used what I call the weekend syndrome for and against myself. That is, I know I'm not fit enough to do X or Y, but I tell myself, it's the weekend! and I protest inwardly that everyone treats themselves at the weekend so why shouldn't I have the treat of attempting to disregard or short-circuit the awful debility? The trick is to ride rough-shod over what my body is telling me and pledge to pay my dues on weekdays. Even writing this makes me feel semi-ashamed. Clearly this is not sensible planning or wise pacing. To quote Dr Charles Lapp,
'I can assure you from experience that pushing and crashing, denial, depression and a negative attitude are all formulas for disaster, and I have never seen a patient who practiced them and yet recovered.'
I know, I know, yes, we know. But often I feel that pushing it (in short bursts anyway) is the only way I can have some semblance of a life, which in turn keeps my spirit fed.
Anyway, the weekend goody bag included being driven to the country to pick blackberries; and a trip to the cinema to see Little Miss Sunshine, which was kooky and amusing but hardly all-out-hilarious. The blackberries tasted great in a smoothie, whizzed with avocado and apple juice. Check the anti-oxidants on that. And I saw a farm cat greeting a dairy cow - whiskered cat nose sniffing up at wet cow nose, bending down, as if they were the same species.

Tuesday, September 05, 2006

Forget the Tiara Thing

This is a photo of an American pop singer called Ciara. Only she pronounces her name, See-aaa-raa. Oh horror of horrors. As if I don't get enough confusion surrounding my name already. For any new readers, my version is pronounced Keera and all my life people have mispronounced it - as in diamond tiara. I can hardly blame anyone though. Anyway, now that I've got my new stats info, I realise that I get a few random hits from people looking for the gorgeous pop Ciara (See-aaa-raa! 'Comin' at cha!') as opposed to 'Her offy that Belle and Seb cover that writes they poy-ems and doesn'y keep too well, although she looks well enough to me...' (that's a Scottish accent for all ye others). Meanwhile See-aaa-raa fans shake their heads in bewilderment and click on the back arrow.
I got out for a just couple of hours on Sunday to a local park to see some friends play in a band (Camera Obscura). The girls took me back stage afterwards where they made me chamomile tea, which I drank with a coleslaw sandwich and a banana. The rain was splattering on the roof of the small marquee and it was not unlike my memories of camping. I felt sheltered and randomly yet agreeably fed .

Thursday, August 31, 2006

A Piano in the Dressing Room

I just received my first 'wrong number' text. It read There is a piano in the dressing room. Fantastic.

The Paradox of Hope

'You want me where?'

Recently I have been considering my use of the word hope. 1. hope, noun - the feeling that what is wanted can be had. I have often found myself saying or writing well-meant things to ME pals, like, 'Hope you feel better soon.' Consider this: would anyone say to an amputee, 'I hope your legs grow back,' or even 'I hope to God stem cell research will find a way to create new legs'? Not likely. Tactless, me?! Granted, there are fluctuations in ME, but likewise, there is also a constant point of function at which the majority of us have never been able to get beyond.
So there are days when I am striving for the mental equivalent of the amputee's prosthetic legs; the adaptation to a situation I cannot change. There's always a dip in my stomach as I set denial aside for a while and stop wishing for major improvement or healing. This may feel like defeat on many levels yet I know that it takes strength. It does. It goes against all our conditioning. It's the camel passing through the eye of the needle. I know I go on about this in my blog but there really is the biggest battle, or the biggest shift, contained in that one small word, accept.
Well, the sun is shining here and I'll be able to get out for an hour to meet Stuart for tea/coffee soon. Phew - I will be sure to appreciate it while it lasts.

Wednesday, August 30, 2006

Footprints and Film tastes

When I wake up each morning I pull my laptop into bed and surf round my usual sites. Before breakfast, I check out a few newspapers online and, as this tragi-comic article explains, I (like the rest of the world) leave trails of internet footprints. Next I'll click on friend's blogs, various pop sites or messageboards, health news etc. I like to check out the day's TV and radio listings and watch the BBC weather. Deleting spam is almost a reflex action. Be gone ye offers of Viagra or ten grand loans and don't return!
Saw Almodovar's latest film Volver recently. It looked lush but I thought the plot was just plain daft. I prefer realism in a film. Realism can often mean grim, but realistic and uplifting - now that's a winning combination. I'll need to find me some of that.
PS. a wee photo of Penelope since she's not particularly ugly.

Monday, August 28, 2006

Angel cake, Starsk?

I finally figured out how to install a stat counter on this here blog. It doesn't tell you who is viewing but it gives numbers and displays them as wee red dots on a map of the world. Since I am the first to try it, there was only one dot - on Britain (London actually, so only 500 miles out) but I hope there'll be some new dots from continents aplenty. Is aplenty one word?
I didn't make it to Edinburgh where my muso pals were playing a gig in Princes St Gardens. My Aunty Mary used to take us to the gardens when we were kids to see the flowering clock and wave at passing trains, while my mum rushed to M&S to buy angel cake. Angel cake was the nirvana of childhood cake-ery. It was 3 layers of pastle coloured sponge: white, yellow and pink, stuck together with gooey cream. It's probably illegal by now....
Anyway, on Saturday nights we'd drink hot chocolate and nibble Angel cake, while watching Starsky and Hutch on a black and white TV, and frankly, in that moment, the universe could not have held more satisfaction.

Wednesday, August 23, 2006

Toast sized holiday

Ah well, I didn't get to the country lodge. Can you believe I went to Spain a few weeks back and now I can't get a wee hop in my own fair land? Such is the fluctuation. No point in railing against it. (That doesn't stop me railing against it!). I read some writer describing a childhood illness that left her feeling cut off from the world, watching life from the sidelines. She used the word 'transcendental' which I thought was apt. You have to aim for Buddha-like acceptance of a situation you can't change. You have to try and bring something to it.
I keep forgetting. Even tonight I was flicking through the paper and I see holidays advertised and I think, yes, I could go there! I have to remind myself that it's an effort to make a slice of toast today.
I have spotted the first autumn leaves from my window.

Tuesday, August 22, 2006

I Remember Me

Last night I watched the documentary I Remember Me. It mixes personal and political stories in the history of ME - or CFS, as it is called State side. (I can barely even bring myself to use that feeble and futile term, Chronic Fatigue Syndrome. It's like describing the Titanic as a paper boat). The film was powerful and sometimes tragic. Thirteen million dollars earmarked for CFS research was diverted into other illnesses because ours was not deemed serious enough. One researcher physician (Dr Nancy Klimas) said her HIV clinics were more uplifting than her CFS clinics - as at least HIV was respected and there were good treatments available. I bought the film from Amazon here, although UK readers please note it is a region 1 DVD and may not play on UK machines (I switched settings on my laptop to watch it). The only consolation from watching the film is that researchers believe that the truth will finally out and the pieces of the jigsaw are slowly coming together.

Sunday, August 20, 2006

Holy Freebies Batman!

I have an unlikely invitation to a Scottish holiday lodge this week - a surprise from a roundabout route. Friends of friends couldn't use the lodge due to a last minute cancellation (there was a Catholic priest involved somewhere in this chain of regrettable refusal but that's a by the way). So the friends who got second refusal kindly offered it up to myself, Frankster and another couple. I really hope I can scrape together enough stamina to get there for a few nights without wrecking myself too much (there is always some degree of wrecking). But a country lodge by the sea...

Friday, August 18, 2006

If you just...

If there was a pill that made you immune to caring what others think of you, would you swallow it? Technically, of course, this should be possible without medication. I don't like admitting this, but I spend too much time in relapse feeling ashamed that I had become a bit smug (albeit inadvertently) while being slightly more active.
Physical improvement feels like the most natural and progressive thing in the world. The body says, ''s the key at last; this is the right path, keep on like this and you'll be fine.' It's hugely seductive. There is an instinct to look at others, wishing they could feel it too. Yet this can involve a questioning of their situation, of wondering why they are still stuck and the thought, 'Maybe if you just....XYZ'; where XYZ can mean - get up a bit more, sleep earlier, stress less, leave no stone unturned.
People often ask me, 'Is there nothing they can do for you? (ie doctors)'. The question is well-meant but they are probably thinking what I constantly think myself - 'Have I tried everything I can? Am I doing everything I can?' The answer, I think - as far as we know the answer to anything- is YES, YES, YES. It's only in relapse that I feel this in every cell. I feel awful that I (as a PWME!) wondered if other PWME couldn't try something different or do better. I'm convinced that if PWME's can think this way of each other, then God knows what prescriptive thoughts Joe Public has about us. Even the most well meaning Joe Public...
And, of course, we cannot stress ourselves by worrying about it. Send us off to work in the mines, I say! Give us jobs in holiday camps! Don't let us blog about it for goodness' sake.

Thursday, August 17, 2006

PC plod

Sorry, this post may have to carry a bore warning. The key information I wish to impart is that my e mail address book has been wiped yet again. Remember I got a new laptop 2 months ago? Well, it still continued to have niggly problems so technical support talked me through a resetting process that took the computer back to how it was on day one. Hence I have no e mail addresses unless people e mail me. (Bizarrely, I was able to import addresses on a previous laptop but can't find how to do it here). Anyway, if there are any benevolent techies reading, the error code is 1024 and it arises after I link my modem up. But this code never occurred when I liked the same modem to the old laptop. God, how eye-wateringly dull this all is to me. I wilt at the thought of it all. Maybe I should have bought a Mac...
I'm still at a much lower baseline of activity. I'd say 10% of normal. I had friends visiting last night which was enjoyable. I'm popping out for a massage today but that'll be my heady limit.
PS My ISP will phone me next week with tech help. End of yawny computer talk.

Saturday, August 12, 2006

Placebo Blanket

My 2 year old niece, Maddy, lost her blanket recently. She was distraught and would not be fobbed off with any other tea towel or imposter scrap of material. It turned up a few days later and she was so excited to get it back. Like many kids, Maddy likes to hear stories where she is the main protagonist so my mum recited the tale of a wee girl called Maddy who left her blanket behind, and Maddy started to cry at the mere retelling of it. And I thought: the power of placebo; the soothing that is wholly projected! Where can I get one?
Seamus Heaney doesn't care if words are in the dictionary or not. He'll put them in his poems anyway. I like - 'plashy', 'workadayness', and 'Night after nightness.' He loses me on 'quid-spurt fulgent,' but I won't hold it against him.
Health-wise, I've had a corker of a rubbish week, so I let myself put a few crying tunes on the hi-fi to help the melancholy along. You've got to, on occasion. Nothing like a sad country song.
Well, good night far and wide, my friends of the blogosphere.

Thursday, August 10, 2006

Speak no evil

I've been watching the news about the foiled terror plots. I don't like it when politicians describe people as 'evil.' There are evil acts but once you describe people as intrinsically evil, there is only outright war and condemnation and no way back. Of course these acts are monstrous but we've got to ask what makes someone want to get on a plane and blow themselves up in the name of a god? How can you solve a problem without trying to understand its causes?

I'm still marooned on the raft of relapse, floating about without oars. I know I shouldn't speculate, but I guess at timescales for improvement. On previous occasions it's taken a few months. I can recall past summers when I've been a house prisoner reduced to watching Big Brother while my closest pals go to pop festivals in Europe. I am tired of Big Brother. I feel wilted and worn after watching it.
I'm reading poetry by Seamus Heaney and Philip Larkin. Also nearing the end of We need to talk about Kevin , a novel that explores how and why a teenage boy would shoot his fellow classmates. Fairly relevant...
Stuart took me out to Pollock House this afternoon. The gingerbread was the highlight of my day so far.

Sunday, August 06, 2006

Never the bridesmaid

Thanks for a few of the kind comments. Sadly no wedding trip to report back from. I was swithering for ages but swithering is usually a sign that the cost/benefit ratio will be too high and I'm just too unwell. Francis phoned to say the band had fun doing covers. I could hear James Brown in the background. Get up, get on a sex machine. Aye, right.
PS I should explain to international readers that, 'Aye right' said in a very flat tone is Scottish sarcasm that translates as, 'You've got to be kidding.'

Friday, August 04, 2006

That'll teach me...

Or will it? In my last post I'm talking about possible volunteer work and now I want to rant (yes, rant!) about the cruel unpredictabilty of symptoms in ME. I'm still getting days of feeling absolutely awful with that classic sensation of being 'poisoned'. It might not be poisoning as in swallowing weedkiller, but I do feel as if I've run a marathon while glugging a bottle of whisky, slept for an hour and then woken up to start a new day. And throw in a wee bit of self-blame as I wonder if I've brought it on myself for doing too much in previous weeks. Lovely! Here's a link for fellow ME peeps where researcher Kenny De Meirleir explains why he thinks we feel this yucked.

I'm just grumping because I'm invited to a wedding reception tommorrow night in a Scottish country castle where the wedding band is made up of
B&S members doing covers. Nice Man is on drums. I hate missing the fun but at this rate, I might not make it. I've got that deja vu feeling of the days when I used to miss most things. So, yes, why don't I get a volunteer job as person who can hardly get out of bed...?
I'll see my nieces later today. That should console me somewhat.


Wednesday, August 02, 2006

What to do?

One of the reasons that ME is often misunderstood, is that there are many levels and phases of the illness. As some of you know, there were years when I was bedbound in constant pain, barely able to move, speak, read, watch TV or do any of the things that make life bearable. Daily I am grateful that I am no longer suffering this acutely, yet at the same time each phase or stage presents different challenges. Currently I can get out for a couple of hours most days with the use of my dad's car. I'll meet friends, go to a cafe or the library. It breaks up my day and it's such a relief to get out. Now I'm beginning to feel I should be doing more with the time I have - ie being creative or helping others. I'm looking into the possibilities of volunteer work. In a previous phase of illness I did short shifts on a telephone helpline for people who wanted to find out more about volunteering. We referred them on to their local volunteer 'bureau' (as it was called). We'd get the odd call from a confused old woman who just wanted 'a wee lad to paint her fence.' In the end, I had to leave the job when I relapsed - but it was good while it lasted. There were comfortable swing chairs and work colleagues to joke with. That would do for starters.