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
Tue, Apr 18 2006
Finally, an update!

I know I do have a few readers out there, so if you have been waiting for an update, my apologies. I have felt under the weather, it seems, for the last six months. After my huge bout of bugs in February (along with, it seems, my ABPA playing up) I had no energy to write, and was finding it hard to read. Luckily I sent some emails to work about what was happening and I started a series of postdated entries with one of those.

My current state is nervous anticipation - perhaps why I feel able to write a bit more - but also, now both my diabetes and ABPA are better controlled, I feel a small rise in my bounce factor. But just a small one.

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The last three weeks

It has been two and a half weeks since I came back from Holland. The trip itself mostly went smoothly, although there were a couple of amusing blood sugar incidents: I forgot my blood sugar kit at the concert, preferred to go high rather than low and ended up being very high as I sang very loudly throughout the coach journey back to the hotel; and on the final evening I went the opposite way and wandered around the bowling alley shaking with low sugars as I tried to record the evening on a camcorder (with only a single packet of fruit pastilles to keep me safe!).

I started dropping my steroids half way through the trip (going to alternate days) and dropped down to 15 a couple of days later. It -was- a bit rushed, but I was desperate to get my blood sugars under control. Although I got through it fine, the erratic and varied meals in Holland combined with the steroids had left them fluctuating wildly and it took until the Monday (having returned Thursday) to get straight.

Before I went, I had asked my acupuncturist if he could help and he gave me something which should theoretically prevent the reaction (therefore mimicking the steroids). I started taking some of that (no.15) and the current anti-heat tincture (no.14), the latter because I am still having hypers which cause heat. It is definitely having an effect because when I forgot/was too tired to take it for a few days I started getting short of breath and producing dark sputum again. Solving the problem has also meant that I no longer need to see the cranial osteopath every week as I did for a short spell.

My health had an effect on my social activities - I almost missed the choir trip (and sang quite badly due to tiredness and chocolate); I missed a rugby international, although we gave the ticket to my godson who was ecstatic; I have missed most gaming nights; and a few projects slipped behind. The biggest worry has been, and still is to an extent, my Masters degree, which I have barely touched for a year. Luckily, the staff at Aberystwyth are very understanding and have allowed me to postdate a claim for an extra six months of time out. Still, getting back down to academic work is tough.

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Posted at:Fri, May 05 2006 11 AM