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.