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

Blog software

WWW This blog
Sat, Dec 24 2005
Movie special!

In the last few months, the current owner of pwcf.net has been on TV at least twice to raise the profile of both Cystic Fibrosis and the transplant service. Emily is a star and these interviews are absolutely amazing - I urge you to watch them, if you have not already.

Many thanks to jac and her husband (from the CF forums) who recorded and uploaded these files.

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Recovering my energy for Christmas

Sorry about the long gap since the last update. I started getting really tired, and found I could not kick the late nights (I was too tired to get to bed!). It is incredibly annoying when everything should be going so well to be unable to even write Christmas cards.

This year's theme for the cards was jokes (in previous years I drew penguins in various silly situations, but I was out of new inspiration this year). I eventually managed to compile enough jokes and print them out, and just before my colleague went on her long holiday I got the work ones done. I also managed to get my overseas ones (well, most of them) done in time. Then I ran out of energy.

Luckily I saw the acupuncturist on Tuesday (truth be told, I could have done with an appointment last week, but I did not even have the energy to change the appointment). He diagnosed dryness and fixed me up.

It still amazes me that such a seemingly simple problem can cause such havoc, but in combination with the naturally dehydrated state of CF patients (and diabetics) it can clearly be devastating. With this information, I could turn down the heating in the house, drink more water and, once he had done his work, do physio. Actually, with all the dryness my sputum had built up, and the last couple of days have seen a large amount of coughing and physio. With the aid of no.9, it is becoming thin again and just in time. In 5 hours I will be singing Midnight Mass.

The funniest part about all this is that the hospital would never give a diagnosis like this, and would no doubt prescribe near useless antibiotics (my sputum colour has barely darkened).

Meanwhile, following a suggestion on the CF forums, I suggested taking Oregano oil to my acupuncturist (and herbalist). He did not recommend it, but gave me a photocopy from one of his books on the matter. Among its many effects, it is listed as a remedy for digestive upsets, respiratory problems, colds, flue and inflammations of the throat. These are all major or common problems for CF sufferers. Unfortunately, it is a dermal toxin, skin irritant and mucous membrane irritant. Since the primary ways of taking the oil are by rubbing it on the skin or inhaling it these present significant problems!

And with the update over, that leaves me to say:

M E R R Y       C H R I S T M A S

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Tue, Dec 06 2005
And the gym

My exercise regime is still lax, and I have been having increasingly late nights (going to bed at 2 in the morning, waking up at 11), and both my diabetes and digestion have been getting worse. Some of it I am sure is tied to the weather. I am hoping some decent exercise might sort some of this out.

So to the gym. Some exercise went well, but half of the weights found me worse than before and the cross-train even on level 10 left me feeling weak (although not completely out of breath which was satisfying). Overall? I need more exercise, especially in the gym at the moment. I did feel a surge of energy when I got home, but that soon vanished into the normal drifting routine.


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Thu, Dec 01 2005
Good news on swimming

Despite some weak strokes and swallowing some water on the last length, I managed 11 lengths of the pool - a massive improvement. The fact that my underwater swimming was distinctly shorter than usual I actually put down to a slight loss of muscle tone - time to get back to the gym as well. The swallowing of the water... well, I am still resting, just a 10 seconds, between lengths - but because the pool was closing I headed back a bit too soon on the last length.

(I was meaning to go earlier in the week but kept getting caught up in mini-projects or difficult queries.)

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Posted at:Fri, Jan 13 2006 2 AM