Picks-at-Flies's Cystic Fibrosis Blog

I suffer from the genetic condition Cystic Fibrosis. I generally keep myself comparatively well with Western antibiotics (and steroids, and vitamins and...), Osteopathy (generally to tackle tightness on the lungs) and Acupuncture. Unfortunately I tend to lose track of how I was behaving this time last year so I have started this blog to help me keep track of things. You are also welcome to look. For more on Cystic Fibrosis see the CF Trust website http://www.cftrust.org.uk.

Articles: Chinese medicine, CF and Me :=: Another year on :=: Top ten ways of staying healthy
Reference: Description of herbs :=: List of herbs :=: About this blog


August 2006
July 2006
June 2006
May 2006
April 2006
March 2006
February 2006
January 2006

December 2005
November 2005
October 2005
September 2005
August 2005
July 2005
June 2005
May 2005
April 2005
March 2005
February 2005
January 2005

December 2004
November 2004
October 2004
September 2004
August 2004
July 2004
June 2004
May 2004
April 2004
March 2004


> pwcf.com
A "fan" site created by People With CF. Highly recommended.

> CF Trust
Official site for this excellent British charity. Includes extremely well populated forums - highly recommended.

> What is Cystic Fibrosis?
A pictorial guide to the key parts of CF and to living with it.

> Cystic Fibrosis Medicine
A somewhat thin internation site for CF patients and specialists.

Other blogs

> Breath of Life
Another CF blog, rather more complete than mine!

> Cystic Fibrosis and Me: A Personal Journey
(Clockwatcher sadly passed away 2006; the site seemed to follow him)

I seem to have lost my links to other CF blogs. If you want yours added, give me an email.

Visit the CF Trust

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WWW This blog
Tue, Jul 20 2004
Acupuncture - good news

Yes, I am well! Despite almost missing the appointment (quick phone calls between 4 people and a quick getaway from work) it turns out I am doing well. So well that we discuss the future. My acupuncturist described the current state of my lungs - dry but irritable - as similar to treating redeemed smokers. Consequently we will look into taking herbs to cool the lungs.

Noticeably he said that he could never have considered that concept when he first saw me almost three years ago.

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Shuttle test!

The physiotherapist wanted to fulfill their aspect of the annual review. This basically includes stretching the truth about how regularly I do physio then doing the shuttle test - moving between two cones as the pace gets faster until you give up.

Last time I finished the test. This time there were IIRC 3 more minutes, but obviously these were a lot faster. I was within 7 beeps of the end (halfway through the final minute) when I realised I could not move my legs any faster. The conclusion was that I was merely unfit. Sad since I have been fitter but much better news than having bad lungs.

I might have had extra leeway had I been wearing trainers not bare feet - that extra speed turning can make all the difference at the end. I mean, at school we had kick boards to turn on!

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Mon, Jul 12 2004
End of antibiotics

Actually not the end because I started taking the antibiotics too late. Lung function was sufficient - 3.3/5.7 or something.

I was meant to be writing an essay for my Masters over the last two weeks. After the antibiotics stopped I realised why I had been writing at a snail's pace. Normally you don't notice how tired antibiotics make you feel because you are ill anyway (or suffering lack of sleep due to the short space between IVs). I wasn't very ill and suffered.

I did need them though.

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Fri, Jul 02 2004
Walking in the rain

I was feeling good, I walked to work. It started to rain, but I declared that it was so gentle that it wouldn't harm me, despite just wearing a shirt. Remember, ladies and gentlefolk, waking in just shirt sleeves in the rain is a Bad Idea. I had a 3-4 day period where my lungs filled up again and it was only through liberal use of physio and herbs that I bounced back rather than circling down.

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Thu, Jul 01 2004

Damp Heat. While I joke that this is like rising damp, what it really seems to give is a strange lethargy (similar in fact to what you can feel on a muggy day, but continuous). It felt like a cop-out explanation until I took tincture no.8. I had been taking no.3 with no.7, so my acupuncurist added an expectorant to no.7 to make 8.

No. 8 make me feel alive again, gave me the energy that had slowly seeped away. Back to swimming, back to essay writing. Too bad the antibiotics I am taking drain so much of it away again.

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Posted at:Mon, Jul 04 2005 11 PM