Are we there yet?

Some friends have kindly invited me to stay at their cottage on the isle of Arran for a few days. I've packed my tartan rug and will report back later.

-C

Older but only slightly less sinister

Cover stars ten years older feeling slightly less sinsister. I made Stuart do it. We had a nice sandwich in the cafe afterwards, although I felt slightly queasy after that rice krispie cake.

-C

Double Kisses, Single Goodbyes.

Will someone please issue standard guidelines about social kissing? We have gone all European and lots of folks now aim for a kiss on both cheeks..but not everyone. I can get traumatised by one side alone; now we have to do that awkward head jiggle, trying to guess if two kisses are required.

It's almost as embarrassing as 'The Double Goodbye' as cited in 'Curb your Enthusiasm'; when you say a big flurry of goodbyes to someone and then meet them again two minutes later - eg. at the till in Somerfield. (Don't get me started on the shortcomings of Somerfield).

So last night, I enjoyed the miscellaneous social collision in the pub, that was Alasdair Gray , Stuart, Marisa, Francis, and The Tourettes. You can see I've just learned to do links. We talked philosophy and life after death. Or not.

Okay, bye for now. That'll be a single goodbye.

-C

PS Picture is by Francesco Hayez.

Every day is like Sunday?

When I was a kid, Sunday was my least favourite day - homework, church, roast beef and classical music; all of which I thought I could do without (oh, the ingratitude!). I love Sundays now as it usually Country Drive Day. Francis and I drove out to our nearest patch of countryside -the Campsie hills. This old graveyard lies behind the cafe we sometimes visit. By chance we banged into my mum and dad, making use of their free Scotland-wide bus passes for the over-60's. What a great idea to let pensioners go free on the buses.

I'm frustrated by all this political debate about trying to save money on the NHS by cutting back on specialist nurses etc. Why can't we just stop bombing other countries to save cash? Too simple? Surely not.

I did a poetry reading on Saturday night with Liz Lochhead and a few performance poets. I was the only poet who didn't have rhyming poems. Rhyme-less and penny-less. My mum was trying to sell a couple of my books afterwards but a student thought they were free and just nabbed one. Fine. I wasn't going to run after her, shouting, 'emmm, excuse me...'

I went to bed happy last night and you can't ask for more than that.

-C

Calamity Genes

Happy Easter Sunday. The photo uploader isn't working today hence no photos of cute chicks or something vaguely topical to delay you before I move on to my layman's appraisal of gene research in the ME/CFS field.

From my naive and limited knowledge of school biology, I had thought that genes were fixed - eg. genes for hair/eye/skin colour. But I've learned that there are genes for functions in the body -genes for hormones and immunity etc, that can be switched ON or switched OFF by infection.

Gene research in ME is in its infancy but early results suggest that 11 or 12 genes are malfunctioning, causing us to feel very ill (or feeling 'one chromosome off a potato' as someone once described it). The list of suspects include genes for,

"immune response, apoptosis (cell death), ion channel activity, signal transduction, cell-cell signaling, regulation of cell growth and neuronal activity."

When I read that, I felt as if someone had just read out a recipe for the limping chaos in my body. Furthermore, the study added, "Importantly, most of the 11 common pathways are interrelated, suggesting complex biological mechanisms associated with CFS." Bingo. We told you it was complex and deep. We told you it was more profound than we could express.

I was trying to think of a metaphor for the above and, crudely put, I imagine it's like the functions in your house going wrong and living amid the catastrophic cascading consequences. Imagine if the gas supply came out the kitchen taps, the toilet water leaked from your radiators, the rubbish ended up in the fridge and your television channels were all scrambled. Not that you'd be watching TV in that state. But that's no more inappropriate than the psychiatrists telling PWME to exercise and improve their attitude while some are being tube fed and have brain inflammation.

That's the down-side. The up-side is that (after 30 years) this research is finally heading us in the right direction. Certainly a new beginning fitting for Easter.

-C

Gene expression profile exploration of a large dataset on chronic fatigue syndrome.Journal: Pharmacogenomics. 2006 Apr;7(3):429-440.Related Articles,Hong Fang [1], Qian Xie [1], Roumiana Boneva [2], Jennifer Fostel [3], Roger Perkins [1] & Weida Tong [4.*]

Munching Cliches

So this is Loch Lomond by Balmaha (in summer by the look of it). Today the daffodils were out and the lambs were prancing about the fields. I was there with Stuart and Marisa and we lay down in the heather and looked across the loch. It was glorious. Windy and bright with snow on the distant hilltops. I was nibbling my way through oatcakes from a tartan coloured packet, which Stuart said was like 'swigging a bottle of Bucky in Easterhouse.' Sorry, I realise this joke will not translate outside Scotland. It was like buying clogs in Holland or rollerblading down Venice Beach in a bikini top. I was a munching cliche. I try to carry an emergency oatcake about my person, for times of need.

-C

You Tube?

Have you discovered You Tube yet? You can watch or even broadcast your own short videos for free. What a clever idea. I still can't do snappy 'click here' links but try this longer link, to watch the video for Karine Polwart's I'm gonna do it all some day; a song that captures longing for life in a way I can relate to.

http://www.youtube.com/watch?v=6YYRXrW-XKA&search=karine%20polwart

What are you going to do that you haven't done yet?

-C

Here's One I Tried Earlier

Since I started this blog, I've had a good few people with ME (known as PWME in the jargon) write to me and say they like to read it; and of course I have healthy friends who read it too. Sometimes I make the mistake of wondering what the readers want and I don't know where to pitch the blog, in case, a) the Healthies get bored of reading about ME and b) the PWME think I belittle the daily struggle of life with ME.

And yet, I live this dilemma myself. I just got back from a friend's wedding where I pushed myself through the day on adrenalin. I had great fun - the best fun I've had in ages. I was wearing smart clothes and talking to people who didn't know I was ill. I was pretending to be well. ME was the last thing I wanted to think about. Being just well enough to escape reality for a few hours was...intoxicating. Ha. Funny how that word just came up. Today, I'm back to the average 'hangover' and normal collapse of ME. But those rare moments of borrowed escape are what I live for. Would some scientist please just find out why they don't last?

PWME are often maligned by the misconception that they are not trying hard enough to get well. Ouch. Here's a summarised list of 'Things I tried earlier...' I'm guessing I've spent about £10 000 over 20 years.

anti biotics

anti virals

hormone therapy - cortisol, thyroid etc (limited help but not sustained)

various drugs that they use in Parkison's etc - amantadine

vitamin injections

just about every supplement you can buy in a health food shop or online

diet - wheat free, dairy free etc

acupuncture and all those £30 - £40 an hour therapies

I've done the embarrassing things like sending a lock of my hair to a homeopath who promised his potions would get me 'on my feet in 4 weeks.' I've had a faith healer tell me that my muscle twitches were the devil inside me. Each time, some doctor or therapist tries to convince me that their path really is the right one.

One of the only things that does seem to help my energy levels is warmer weather. It's not fool-proof as I've had relapses in the summer too, but in general I love Mediterranean weather. That's why I live in Scotland.

-C

Foolish Hand Gestures

Thanks to Jen for pointing out www.stuffonmycat.com Why is a sleeping cat with a remote control on his head funny? It just is.

On Friday I got invited to a primary school to read some of my poems to P6 and P7. It was great to see their enthusiastic faces. They asked questions like, 'Do you know any famous poets?' Were they hoping I was a descendent of Rabbie Burns? Love child of Pam Ayers and Seamus Heaney? I read a poem about a first kiss and they all started giggling and whispering. I didn't know where to look...

I still feel behind on all the things I want to do. I want to read more, write more, talk more. I've decided the frustrations of ME can be similar to those of learning a language. If I go to Spain, I think it's great that I've learned to say 'Where is the station?' and it is; it's better than nothing. But if I actually want to have a conversation that doesn't grind to a brain-gasping halt, ending in foolish hand gestures and the repetition of 'no se' (don't know) and phrases that might translate as, 'me no good Spanish speak'; well, I've no chance. The words just aren't there. Similarly, I can and do want to do SO much in my day to day life, but my cellular batteries conk out after an hour or two.

Anyway, thank God it was milder today. Daffodil mild. I'm relieved to get past the 'shiver-every-time-you-go-out' phase of our Scottish winter. Phew phew Barney McGrew.

-C