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
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March 2006
February 2006
January 2006

December 2005
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December 2004
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> 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
Thu, Jan 26 2006
Soo... an answer?

As I wait for various bugs with my computer to fix themselves, I feel I finally have the energy (and the motivation - boredom) to update!

I saw the osteopath last Tuesday after I wrote the blog. This was not my usual osteopath or even my usual stand in (they were both fully booked or on holiday) but a woman I have seen once before. She does not have the physical strength to push, pull and squeeze my muscles, so she relies totally on very subtle manipulations - yet it is almost as good as the more vigorous routines. In fact, I think it only really falls short on tackling the diaphragm. She is definitely one to to return to.

All last week I continued to have problems with my lungs. The osteopath and the anti-heat herbs helped a lot, but by the weekend I had to wonder whether the herbs were starting to do more harm than good. My lung function is severely down, although my diabetes, as long as I stayed on the herbs, was slowly creeping down (currently on 17 units needed). By Wednesday this week my sputum, although still a reasonable colour, was getting thicker and tasting of heat again, and my energy was dropping once more. From experimentation (and sleepness nights) I concluded that taking no herbs was worse than taking the anti-heat, but I could not find anything more suitable. In the end I went for a teaspoon each of no.11, anti-heat and the heat-less replacement of no.9. This seemed to have some benefit.

I went to the gym last Wednesday, and struggled through a short routine... my strength is still down. On Friday I went swimming and amazingly did seven lengths - although they weren't amazing lengths, I managed a few without stopping at the deep end. On Monday I actually managed 10 minutes on the cross trainer, although I was struggling near the end of the weights. My real worry is when I get out of breath just moving from one building at work to the next...

There is a small amount of hope on the horizon though. Last week I resumed the trial I started and had to put on hold in October. That was just a matter of using the flutter last week, and sitting in a bath this week. My lung functions last week were terrible - 1.6 / 3.5. On Wednesday, they were not much better - in fact after the bath they were distinctly worse; the trial is hampered by the fact that lung functions seem consistently worse after just sitting in some water, regardless of any effect the sound waves through the water may have on my sputum; I had semi-confirmation from the man running the tests that it was not just me! However, changing the herbs (and having a good nights sleep) seemed to make some difference since I made 1.89 / 3.9. I still have a long way to go - and I think the gym will help a lot here - but it *is* an improvement. My goal is to push the figures up a litre each before I go to my clinic appointment in just under two weeks. Eeep! Some hope...

As a side bonus to doing these tests, they will pay me a little money ("expenses", honestly Mr Taxman), and I get something that seems to be called an iPod Shuffle. The cheapest of the iPods, it might still fetch £60 or more on Ebay for the CF Trust. If I ever get around to it. The actual cash I will keep, since it will pay for half of one of this year's holidays or half my dad's Christmas present... yeah, some expensive things this year.

Finally, I saw the acupuncturist today who solved my diagnosis difficulties. Heat, but not much phlegm. My slightly unclear theory is that the phlegm-herbs within the anti-heat tincture were drying the lungs, which as I learned previously then starts generating its own heat. It was also inappropriate, apparently, because it targeted the liver. What he has now given me, no.13, is a tincture version of no.10 less the phlegm herbs - a lung targeted anti-heat formula. We will have to see what happens!

by Picks-at-Flies  Comments

Tue, Jan 17 2006

I woke up on Saturday after a bad night of coughing up thick, dark sputum with the realisation that the symptoms were those of heat. Since then I have taken large quantities of the anti-heat tincture with good results. My sputum is thinner and lighter, and my lungs are getting clearer. But they are not clear yet. I went swimming last night and, although I could have swum a lot more, I stopped after four lengths because I could not swim and cough at the same time. However, it did its job of moving muscles which are not used to being used. Things -are- progressing.

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Fri, Jan 13 2006
2006, and I am already late

This is my first blog entry for 3 weeks. Not good, but I just have not had the concentration. No. 9 which did me such wonders before Christmas caused problems afterwards. My sputum was becoming thick and sluggish, and so was I. My diabetes started going back up again. Work started and I staggered through emails and problems, but could only summon enough concentration to read webcomics in the gaps (don't worry about my job - I am not paid to be pro active).

I saw the acupuncturist last week, and he went along with my suggestion that I was dry, and he mixed up a new tincture based on no.9, but less dry. Unfortunately this, if anything, made the problem worse. Sitting down with my family, they helped me realise that my symptoms were that of static chi, and a search through my blog showed me that the last time this happened I was also on no.9 - and that stopping it helped me.

So I stopped the herbs and went to the gym (this was Monday). Ug, I am unfit! I have also lost a bit of muscle strength, but nothing that won't be recovered. It was good though, it stretched out some muscles that seriously need stretching. I then came home and fell asleep about 8.30ish. It was an unsettled night, waking up for 5 hours in the middle, but it did start me going to bed earlier, which helped a lot. The late nights and excessive lie-ins were not healthy, although I think they were more a symptom than a cause.

Wednesday I did some training in the morning. I was still not up to a whole day's work, as I have sometimes after morning training, so I went home, planning to splash around in the swimming pool in the afternoon. But true to form, I got distracted and did not go - whether this was laziness or actual lack of energy I cannot say.

Anyway, Wednesday ended up a late night. This morning I woke up doing a lot of coughing, so much so that my late start ended up an even later breakfast. Anyway, I ate three bowls, albeit not quite as full as normal - my appetite -is- returning. After breakfast, I did my first nebuliser in a while (Colomycin, not DNAse), and took some antiheat - my sputum, yellow with little green through the whole static chi business was now getting dark as well as thick.

Then by lunch time, sputum was starting to move, always upwards. No sooner had I coughed one lot up than I could feel some more creeping through my bronchii, impairing my breathing. One of them got stuck in my throat, forcing me to work hard to move it before I choked and I threw up. Yeah, pleasant - mostly water, ADEKS (vitamins) and odd bits of swallowed sputum. I did not feel up to lunch after that, and the sputum did not seem to be stopping so I called off work - I did not want to accidentally do the same in the middle of the library.

The only remaining question - for tonight at least - is why I am up at 2am when I am trying to get better? Well, for the first time in a while I have been able to concentrate. I played an online game which took longer than I expected, had a late supper which I ate faster than expected, and have been doing a few odd jobs. Including this long overdue blog entry. Happy 2006!

by Picks-at-Flies  Comments

Posted at:Tue, Apr 18 2006 8 AM