The Aword

CV Updated for 2011 in About Us

Spinal Cord Injury Treatment New Article

Updated Website

Sorry the update and improvement to the website has taken so long but I think it has been worth it.
However I have managed to post the last three weekly blogs from DocSarah so nothing has been lost in the way of contact and information. They are just in BLOGS at the moment but I will move them to the Front Page shortly.

You can still email DocSarah from the website to get an individual, private reply but please remember that she cannot diagnose you (that would be unethical) but she can give you advice on how to talk with your own medical professionals.

Also DocSarah does not have a private practice so you cannot be referred to for a consultation.Because of this, DocSarah cannot advocate or endorse any type of treatments which might become available. However she does investigate any and all those that have been proposed. In fact I asked her to investigate a trial ongoing in the UK for people with CRPS (Complex Regional Pain Syndrome). She has already been in touch with the trial team and although they do not accept people with arachnoiditis, I know she will keep an eye on the results for us.

I should also be able to post next week, an unedited version of an article she wrote which was quoted in a chapter for Dr Aldretes' last book.

I have at last had a transcript of the lecture she gave at the Chamberry meeting. There is a slide show as well but not sure about how best to present that yet.

Lastly but certainly not least, I hope to be able to post the results of the first survey and they sound very good. Although, I would like more of you to complete it for us. It is an open survey, which will never close, so it is never too late. This may be the only legitimate voice we get - whether diagnosed or not - you all count!

Thank you for time, best wishes

Kim

Chronic illness and pain in the media


Horizon’s recent programme ‘Secret World of Pain’ was an interesting combination of different facets of our understanding of pain: from genetic aspects to psychological. Some new treatments were explored, such as transcranial magnetic stimulation, which shows some positive results although it is extremely early days to say whether it will be beneficial to many people with chronic pain. You can find the programme to download at

http://www.bbc.co.uk/iplayer/episode/b00ybvz6/Horizon_20102011_The_Secret_World_of_Pain/

Style magazine yesterday (Sunday 6th Feb) carried an article about Sarah Manguso (“What it feels like to lose your youth to chronic illness”), who was struck down with an autoimmune condition in her twenties. She has written a book “The Two Kinds of Decay” (published by Granta) on her experiences.  Some parts of the article struck a chord:

“There’s this idea of the sick person being brave or heroic, and it’s not always true. You’re the same person, just sick. I was susceptible to all those beliefs, though. “This is going to make me wise and more patient,” I thought, but in fact it only made me angry.” “I have a close family and my parents were my greatest support. It was only afterwards that I saw how they’d suffered. ..But you can’t predict which of your friends will be able to go with you to this new reality. Some of my closest friends had the hardest time.”

“Slowly though, my perception shifted. I realized that I wasn’t taking time off from some parallel normal life. Instead, I began to see that my years of ill health were my real life, and I could still learn and grow.”

After many years of depression and difficulty in dealing with an unpredictable disease that tended to wax and wane without warning,

Manguso has since married but after 11 years of remission, her condition has returned.  She remarks, “It was deeply frustrating and upsetting, but my new-found stability helped me to weather the storm.”

Think small?


I have just been reading ‘Saturday’ by Ian McEwan (he also wrote Atonement, adapted into the eponymous film starring Keira Knightley).

It’s a really good read, with an interesting plot and engaging characters. There’s a passage in it where the main character, in his late 40s, is talking about his teenage son’s philosophy on life. It struck me when I read it as quite a good way to look at life…

‘When we go on about the big things, the political situation, global warming, world poverty, it all looks really terrible, with nothing getting better, nothing to look forward to. But when I think small, closer in – you know, a girl I’ve just met, or this song we’re going to do with Chas, or snowboarding next month, then it looks great. So this is going to be my motto – think small.’

That got me thinking about my ‘small stuff’, which is somewhat different (being a middle-aged woman, it centres more around a cuddle with my hubby, a soppy film, a glass of wine, chocolate…in combination if possible!).

Now I read the McEwan quote again, I realize what he’s really talking about is countering big bad stuff with small good stuff.

There’s plenty of bad small stuff around too…research suggests that lots of small stresses actually have more impact than one big stressful event.  I guess that’s where the American motto, “Don’t sweat the petty stuff, and don’t pet the sweaty stuff” might be useful.

Perhaps thinking of the bigger picture and retaining a sense of how irrelevant small stuff is in the scheme of things mightn’t be such a bad idea after all…